The blog world knows Carol Blymire for her cooking her way through The French Laundry Cookbook (how I became acquainted with her).  She’s now documenting her adventures in avant-garde home cooking in her new blog, Alinea at Home.  By day, she’s a communications and public policy consultant in D.C.  Day and night, she lives with celiac, a disease that prevents the body from digesting gluten, diagnosed after years of tests for ALS and MS and the like when her dermatologist noticed some rashes and said she probably had celiac.  Celiac sources say 3 million suffer from it.  One in 4 is genetically predisposed to the disease. No one knows what engages the gear that activates it. Millions are likely undiagnosed. Until Carol went on a rant about what she goes through (I was likely being insensitive)—I had no idea what … well, more people, chefs especially, ought to know.

Carol, let’s make sure everyone’s clear on this.  Having celiac disease, the inability to digest gluten, isn’t like being lactose intolerant.  Or is it?  I mean really, how serious is it?

Oh jeez… I hope you weren’t hoping to win a Pulitzer for this, because I’m going to have to talk pretty explicitly about “digestive issues.”  Can we do that on a food blog?

I take that to mean there’s some rectal enthusiasm involved here?

Here’s what happens when I’m accidentally “glutened”: uncontrollable, painful, explosive diarrhea that comes on quickly with next-to-no warning within 30 minutes of ingesting gluten.  So, if I’m glutened in a restaurant, it might hit while I’m still sitting there finishing up my lunch.  If I’m lucky enough to make it to the bathroom on time, then I have to hope there’s enough time in between “episodes” to drive home where this lovely symptom will continue for another 24-36 hours.

Is that it?

Not even close.  Over the next 48 to 72 hours, we celiacs also get to experience joint pain, stomach cramps, migraines, dehydration, numbness and tingling in the extremities, insomnia (despite being exhausted from all the butt explosions), and toward the end of it, a foggy-headed serotonin crash where it’s difficult to get out of bed, think clearly, or accomplish even the most basic life skills.  Oh, and bumpy skin rashes.  Let’s not forget those.  So pretty.

Sounds like the hangover I had after my friend Blake left last weekend, something I hope not to repeat.

Getting glutened is really debilitating.  If I have a big event, vacation, or important meeting, I have to plan to not eat food other than my own cooking the three days before because I can’t risk being stuck at home, sick from gluten, and miss out whatever it was I needed or wanted to do.  And, whenever I eat out (whether at a restaurant or a friend’s house), I make sure I know all the possible places I could stop on the way home in case I get sick.

Why can’t you eat at restaurants and just tell them that you’ve got celiac and can’t eat gluten?

Cross-contamination is probably the biggest risk: you can’t plate someone’s spaghetti a la nero and then plate my food without washing your hands in between.  You can’t put a burger on a bun, re-check the ticket and see that I’m no-gluten, and just take the burger off the bun and serve it to me.  I can’t eat fries that have been cooked in the same oil as anything battered.  If an expediter wipes the rim of a plate with bread on it before serving it, then uses the same towel edge to wipe my plate, then they’ve essentially just wiped my plate with a piece of bread, and I’ll be sick.

So many people lie about having food allergies (“I’m allergic to dairy, so no butter” but they order ice cream for dessert) that some chefs have confessed to me that they don’t take gluten directives seriously.  I get it: I used to make fun of people who said they were allergic to wheat because I thought they were being dramatic and annoying.

What can chefs do to improve?

Trust that when someone says “no gluten” they have celiac and they’re not just trying the latest fad diet.  Learn about gluten because it’s everywhere.  And, be extra-careful about cross-contamination — that’s the biggest risk, actually, in restaurant kitchens.  You can’t touch bread or something with gluten in it and then touch our food without washing your hands in between.  You can’t just do a whoopsie and take the burger off the bun and serve it to us.

Having celiac can be really isolating, because it’s safest and healthiest to just cook for yourself.  But, I’m a social creature and I love restaurants, so I had to (and still have to) muster the courage to leave the confines of my kitchen and let others cook for me.

What should I do if I’m having someone for dinner who has celiac?

Be patient when the person with celiac asks you about every single ingredient and its origin. Be willing to read the labels of every single thing you put into a dish.  Know that we understand how stressful and frustrating it can be to cook for someone with celiac; believe me, we get it, and we love you for making the effort to cook for us.

All of this comes with the gentle reminder to fellow celiacs that it’s in our best interests to call a restaurant a day or two ahead to let them know we can’t eat gluten.  It’s kind of dickish to just show up somewhere and expect a restaurant to deal with a major dietary restriction.  And, always send a thank-you note or personally thank the manager and chef.  It’s not always easy to accommodate people with celiac, so a little thanks goes a long way.

One last question: what’s been your experience when you do find a restaurant that truly understands your condition?

More than once, I’ve actually cried during a meal because it was so good and wasn’t making me sick.  A pastry chef here in town sent out a round of all his desserts that he’d made gluten-free.  There are a lot of chefs who have gone above and beyond to make sure I’ve been safe — and that there’s nothing in the world that has made me feel more cared for … really and truly.

Pizza and photo by Blymire

I asked for a recipe to accompany this post, and Carol asked if she could post Shauna and Daniel Ahern’s pizza dough for their new (excellent) book, Gluten-Free Girl and the Chef (it also makes a great cracker or flatbread dough):


Gluten-Free Pizza Dough

Carol loves this recipe because it is not only pizza dough but also doubles as a cracker dough. She topped this one with olive oil, fresh mozzarella, some Woodlands pork ham, and wine-steeped figs.  She did another last night for the neighbors with tomato sauce, fresh mozzarella, ricotta, and purple basil.

Makes two 10-inch crusts if you like them thick, 12-inch if you like them thin

  • 125 grams (1 cup) cornstarch
  • 125 grams (3/4 cup plus 2 tablespoons) corn flour
  • 125 grams (3/4 cup) potato starch
  • 125 grams (3/4 cup) sweet rice flour
  • 1 tablespoon xanthan gum
  • 1 teaspoon guar gum
  • 1 ½ teaspoons kosher salt
  • 375 grams (1 ¾ cup) warm water, heated to about 110°
  • 50 grams (1/4 cup) extra-virgin olive oil
  • 15 grams (4 teaspoons) active dry yeast
  • gluten-free cornmeal for sprinkling on pan (not all are gluten-free due to manufacturing practices)
  • olive oil, for brushing
  1. Combining the dry ingredients. Sift cornstarch, corn flour, potato starch, and sweet rice flours into large bowl. Add xanthan gum, guar gum, and salt. Sift mixture into bowl of stand mixer
  2. Activating the yeast. Combine warm water, olive oil, and yeast in small bowl. Stir gently. Let rest for a minute.
  3. Making the dough. Pour yeasty water into dry ingredients. Mix at medium speed (using the dough hook attachment) for 2 minutes, until dough comes together and feels soft and pliable. Set dough aside in a warm place and let rise for 1 hour.
  4. Preparing to bake. Preheat the oven to 550° (or as hot as your oven will allow it). If you have a pizza stone, put it in the oven now. Sprinkle a pizza tray or baking sheet with cornmeal.
  5. Rolling out the dough. Cut the dough ball in half. Put one of the balls of dough between 2 pieces of parchment paper. Through the paper, roll out the dough as thin as you can make it.
  6. Pre-baking the crust. Carefully transfer dough onto the pizza pan. Brush dough with olive oil. Bake until the dough feels firm and you can lift it off the pan and will hold its shape, about 7 minutes.
  7. Take the crust out of the oven and top it as you wish.
  8. You can make the second crust immediately (and really, you probably will). Or, you can put it in the refrigerator and have pizza again the next day.

A few other gluten-free sites, besides Shauna’s:

Gluten-Free Easily, by Shirley Braden

Wasabimon, by Stephani Stiavetti

And by a teenager, Lauren McMillan, diagnosed with celiac, Celiac Teen.

Share

113 Wonderful responses to “What I Didn’t Know About Celiac
(plus Glutenfreegirl’s Pizza Dough Recipe)”

  • luis

    On the glutten symptoms she describes I say the are remarkably similar to food poisoning. Hence the real need for her book is obvious to me.

    I associate gluten with flour…but Carolyn are there other ingredients that have glutten besides flour…??? anyone??
    I’d like to know.

    • Karen

      Hi Luis, Many people mix up gluten, gliadin, lectins and WGA (wheat germ agglutinin). Well, gluten is derived from the Latin word for glue. It is the composite of the plant storage proteins prolamin and a glutelin. In wheat the prolamin is gliadin and the glutelin is glutenin. In other cereal grains you’ll find other prolamins and glutelins. So the variety of gluten and its components as found in various cereal grains is diverse. There is more to explain which you can find in our post, you can read it here http://bit.ly/cyKHre Maybe it can help you further. VBR Karen

    • Chandra

      The ingredients that have gluten, other than flour and wheat products (pasta, gravies, sauces, etc.) are mainly barley (including anything with the word “malt” in it unless it specifies “corn malt” or “rice malt”), rye, and most commercial soy sauces. Believe it or not, Kikkoman soy sauce, which is the most widely used in restaurants, has four ingredients: Water, wheat, soybeans, salt. Yes, more wheat than soy in soy sauce! Scary!!!

    • Jackie

      Other ingredients that contain gluten are: malt, barley, rye, wheat, and contaminated oats. (There are gluten free oats).

    • Shauna

      For Luis’s question.
      Whatever a grain can be used in, that can have gluten, not just flour, sadly. And while some of the gluten is in products other than flour, more of the problem is that modern processing and farming can contaminate pretty much anything WITH gluten, even if it was originally gluten free.

      Many grains and beans are grown on fields with gluten containing grains, transported in the same trucks (that aren’t always cleaned between grains), milled on the same mills, and processed on the same equipment – they get contaminated. Nuts and seeds are often processed with wheat. Many medications uses gluten as a binding agent. Household cleaning agents and soaps often have gluten as an ingredient (so cleaning your plate could actually cover it in gluten, if it’s not rinsed well enough).

      It’s even harder for celiacs who are significantly more sensitive to gluten than the regular population. Pesticides, fertilizers, and coatings to keep fruit from rotting can use gluten as a binding agent. Mulch and straw from wheat, rye, or barley can be used. Most celiacs don’t react to these small amounts, but a very small percentage do.

      It’s a real mine field.

  • ginger

    it’s so nice to hear someone else speak frankly of the symptoms of celiac, I share the same symptoms as well as the same zest for life, cooking and dining out. thanks for posting this interview! (and the pizza dough recipe)

  • ginger

    to answer luis’s question gluten is found in wheat, rye and barley, barley malt ( so all beers), soy sauce, most store bought broths and soup bases
    most folks can’t have spelt either, spelt is a grain similar to wheat sometimes called farro

    • Ann

      My dietician suggested I try soy sauce, the amount of gluten being absorbed by the production process. It works, although I am sure that this is different in any given person.
      I live in Europe and after travelling extensively in the US, I can honestly say that it is somewhat easier having celiac in Europe than in the US. Note: Somewhat!
      I have a nut allergy as well and it infuriates me when people use the word allergy to excuse themselves from any kind of foods. Just say that you don’t like it for pete’s sake. Saying you have an allergy when you don’t just mixes stuff up.

    • Gordon

      Certainly not all beers. There are a number of gluten-free beers in a variety of styles on the commercial market (American and European versions may have a minimal gluten content, while Australian versions have “no detectable gluten”). Buckwheat and sorghum are commonly used, and chestnut occasionally. There is also a substantial community of GF homebrewers.

  • Nancy@acommunaltable

    Re: the question about whether celiac is similar to lactose intolerance. Celiac is an autoimmune response to gluten and presently we don’t know what causes it but it seems to be genetic in origin. Lactose intolerance is a condition where the individual lacks an enzyme used to digest lactose. Unlike lactose intolerance, Celiac disease is permanent – there is no cure and the disease does not change over time (i.e. people become able to ingest gluten). Lactose intolerance, on the other hand can change – some children who are born lactose intolerant can tolerate lactose when they are older.Complicating matters, there are some people who are allergic to wheat – which is not the same as celiac disease. Thus, its very important for people with celiac symptoms to have those symptoms evaluated to see if they have celiac disease. Aside from the nasty side affects, those with celiac can damage the lining of their stomach by ingesting gluten and such damage can interfere with their ability to absorb nutrients. Medical tests are needed to definitively diagnose celiac which is why it’s so important for anyone with symptoms to have them evaluated by a doctor and not self diagnose.

    • Richard Stevens

      Nancy, my Dr. just shrugged his shoulders at my symptoms, and I had a blood test done that came back negative for celiac. Turns out I am gluten intolerant and there is no test to diagnose GI. After a lot of online research and going on a gluten free diet my symptoms (much the same as Carol’s) subsided. My Dr. still just shrugged his shoulders! Some times you have to “self diagnose”! Check out The Gluten Intolerance Group at http://www.gluten.net for more info.

  • Victoria

    Thank you, Carol, for speaking up on this. And speaking frankly. It’s one thing for chefs to think people are being “picky” – another when you really tell them exactly what happens.

    I was recently diagnosed with a wheat allergy (not as bad as celiac, but not very fun either) and even though I am knowledgeable about food and cooking, I’m amazed the amount of times I have managed to screw myself by not realizing what contains wheat or cross contamination (trying to teach my husband about cross-contamination has been an adventure – Guess what sweetie, now that you stirred the sauce & your wheat pasta together with the spoon and put it back in the sauce, I can’t eat any!).

    The un-obvious stuff that you need to avoid beside wheat flour products and breads and cakes? Soy sauce (most brands contain wheat). Any “loaf” or “ball” or formed meat product that contains breadcrumbs as a binder. Most commercial rice mixes, because they usually contain wheat. Check your BBQ sauce label – some contain wheat or gluten products. Oats that have been manufactured in the same facilities as wheat. Any cereals that are made in facilities that also process wheat usually aren’t safe. Any sauce thickened with wheat flour (FYI – two parts rice flour to one part cornstarch to equal the amount of wheat flour for thickening has worked well for me and kept me fairly sane and able to cook most of my “old recipes”). Commercial soups that use flour as a thickener (and a lot of them do). Celiacs have it even worse – nothing with barley, malt, etc. That includes most beers. Yes, french fries that are cooked in oil with anything battered or breaded will cause a reaction. The majority of fast-food chicken – even the plain or grilled stuff – has a wheat or gluten additive.

    This is very little I’ve experienced in my life that is worse than dealing with this and being a food-lover. It can easily make you very, very scared of food.

  • Pat

    There is a bakery here in NE OH that specializes in gluten-free treats. I want to say the name of it is “Miss P’s Gluten Free Cupcakes” or something like that. If you are interested, I can find more info for you. And thank you for shedding light on a condition that many of us (I, for one) had not realized was so serious.

  • Terry

    Thank you for posting this. It will go a long way to helping those of us who can’t eat gluten! I have been really lucky – my friends go out of their way to accommodate me, and I’ve found a number of restaurants in SF that understand this issue and have treated me very well.

    More awareness can only help!

  • MessyONE

    Celiac disease is a scary, scary thing. It’s a horrible thing to have to deal with, and I can fully understand why you’d be afraid to eat out.

    There’s hope, though. My gastroenterologist (who tested me for celiac because I was anemic – I don’t have it) told me that a couple of biochemist friends of his are part of a team working on a supplement that can neutralize gluten. It’s four to five years out, sadly. The idea is that if you take this stuff with food, you won’t get sick.

    It’s to work sort of like Lactaid, which breaks down the sugars in milk so that we lactose-intolerant types can have the ice cream without having the same kind of lower-bowel explosions that celiac sufferers do. I used to be sick to my stomach (and nothing else, thank goodness) for up to 36 hours after being fed hidden dairy.

  • Jeanne

    Great post! I’m so glad Carol got down and dirty with her descriptions of the results of being glutened–they are really that bad. I have the same situation she does: I am best if I eat my own cooking at home, but I am an incredibly social person. It’s tough to be social when every social function (especially for someone in the food business) revolves around food.

    I think her advice to chefs/servers is right on the money: don’t double guess people who say they need a gf meal or doubt that they are telling the “truth.” Just assume that they are telling the truth and go from there. Recently I had an experience where I declined to eat a gluten-filled food at an event and someone near me said, “Ah, come on. Live a little. Just a little won’t hurt kill.” I had to explain that yes, a little will hurt me–in fact, because I am wheat allergic (on top of being celiac), I could go into anaphylactic shock and die from eating gluten. It’s a bit scary to go out and be dependent on chefs and servers who might not take me seriously.

    Thank you for this post!
    PS: Celiac disease, the autoimmune version of gluten-intolerance, is way more than just the “inability to digest gluten.” Since it’s autoimmune, it’s like diabetes or multiple sclerosis–the body starts attacking itself. In this case, gluten triggers the body into attacking the intestines. Not only uncomfortable, but incredibly dangerous to the sufferer as well.

  • Victoria

    In regards to the recipe (a “whoot!” on the fact it doesn’t involve sorghum flour which so many gluten-free recipes seem to use and I have not been able to find in the NW Chicago burbs) – is there any place you can buy xanthan gum in small quantities? I’ve only seen it in a large (and expensive) package at Whole Foods.

    • Irvin

      I purchase xanthan gum from the bulk food section of my local food co-op. That said, you have to be pretty careful about bulk foods as there can be cross contamination with the scoops and such.

      Your best bet, if you really want to start baking gluten free is to bite the bullet and buy a bag of it (bob’s red mill has a bag for about $12). It will last you FOREVER since you usually only use a tablespoon (at the most) at a time for a recipes. However, if you really don’t wan to to spend the money, try getting some guar gum. Often you can substitute 1:1 and guar gum is usually significantly cheaper.

      That said, this recipe uses both guar and xanthan and they work synergistically together (eg. combined they bind much more than alone), so I’m not sure how it’ll turn out if you just use guar.

    • SWoody

      The power of the Internet may be the salvation for you. Google (or whatever other power tool is your choice) and order on-line. I live in a fairly rural area, and anyone mentioning xanthan gum or guar is, frankly, out of luck trying to find them around here. And yes, there are people who live with celiac in these parts – one of my customers at the supermarket is raising two children with celiac. She would be lost without the Internet.

    • Jenn Sutherland

      Victoria – All the Whole Foods shops I’ve been to in Chicago carry Bob’s Red Mill GF Sorghum flour – it’s labeled as “sweet white sorghum,” I think. As for Xanthan gum, it really only comes in the large bag, but if you keep it in a tupperware in the freezer, it will keep for a very long time!

      • Kathleen

        If you have an Asian market nearby you can usually find sorghum flour (also known as Jowar flour), sweet rice flour, tapioca starch, fine ground white rice flour and possibly others as well…and you will undoubtedly pay less than you would in other retail markets. Xanthan gum is expensive, but usually you use very little in gluten free recipes so it last quite a long time. You can also grind your own flours, and create nut-flours as well using a designated “coffee grinder” just for that purpose. I do it all the time and it works beautifully. I would also like to recommend Jeanne Sauvage’s site http://www.theartofglutenfreebaking.com ….I’m using her gluten-free all purpose mix exclusively…converting all my favorite recipes that I formerly made prior to my diagnosis. It works and I’m as happy as a clam!

  • Erin Swing

    Thank you so much for this posting: Michael, Carol, Shauna.

    Food professionals should take their customers’ needs seriously. Period. There has gotten to be this mentality in the foodie world to challenge people for what they do not or cannot eat. It has become more antagonistic than anything. Please, respect peoples needs, take it seriously, and leave it at that.

    There’s nothing that is more mood-bursting and loss of appetite when I’m out eating w/ friends, etc & they (or the server) want to know what happens to me when I eat gluten. Look, it’s frigging disgusting. I don’t want to talk about it when I want to enjoy others’ company. Just acknowledge, respect, enjoy each other, safe food, with good wine/drinks and conversation.

  • Tony

    Thanks so very much for the blog. Carol is my wife’s cousin and we have enjoyed her for many many years and so glad that they finally figured out what was making her so very sick. Amazing that she still cooks all the wonderful things that she does and we follow each post with great interest and admiration.

  • Kathy

    I had a houseguest visiting from France recently who had celiac. She explained that most common pills are covered in a substance containing gluten. So it isn’t just food. The use of gluten in ingestible products is very widespread. Whole Foods has a section which offers gluten free products which appears helpful.

    • Leesa

      I have celiac and you’re right. Many prescriptions and OTC meds contain gluten. The same goes for shampoo and skin products. I had to give away hundreds of dollars of really good stuff and replace it with other products. Carol is right: gluten IS everywhere.

      Thank you for this blog post. For years, I felt like the leadership in the food world didn’t get it, or thought celiac was people just being picky. It’s an autoimmune disorder that forces our body to destroy itself. The more we talk about it, honestly and in real language, the better it will be for all of us.

  • Richard Stevens

    Michael, thanks for helping raise awareness about Celiac and Gluten intolerance! For some of us It’s not a fad diet!

  • Johnny K

    Wow, I had no idea how serious celiac disease is. Thankfully none of my family or friends has this, so I’ve never really encountered it. I’m amazed at all the different foods that can contain gluten. The cross-contamination issue is fascinating, in a bad way. Knowing how I cook at home, a spoon can go from pot to pot without me even thinking.

    Thanks for all of the really good information. Frank discussions like this is what can get the word out so people understand the severity of this issue.

  • Emma C.

    Now we know.
    This is very informative, and it’s good to hear it this way.
    That’s why when ‘they’ take your order, make it crystal clear that your note is delivered to the chef.
    Thank you.

  • Jason Sandeman

    Thank you so much for this article. I am going to post something pointing to this article, because I think it is that important. As a chef, I realized the impact Gluten had on people, as one of the cooks I used to work with was Celiac AND had Crone’s disease. (Trust me, a BAD combination.) What I didn’t realize was the extent of the danger of cross-contamination. I will be extra vigilant now. Thank you for opening my eyes. I will treat Gluten as if it was a seafood allergy.

  • Louise

    For those with celiac disease, Tamari is a great alternative to soy sauce and I think it actually tastes better – richer, deeper flavor.

    • Crystal

      Please make sure your tamari is wheat free. There are wheat-free tamari’s (San-J makes a regular one and a low sodium one that’s available at Whole Foods and orderable online), but not all tamari’s are wheat free.

      No one has mentioned pasta — regular pasta is made from semolina, which is wheat. There are lots of GF substitutes — my favorite is 100% corn pasta. It’s indistinguishable from wheat pasta (whereas rice pasta is super slippery and flavorless). Veneziane is the brand I typically buy, but there are a couple out there, all from Italy.

      I’ll also mention that Chex makes all their cereals (except Wheat Chex) gluten-free.

  • Kenneth Salstrom

    My friends Aunt has celiac disease and every once in a while I’ll make her a Potato Starch Sponge Cake. It’s sort of like an Angel Food cake except for Potato Starch instead of flour and whole eggs instead of just whites. Potato Starch can usually be found in the kosher section of the supermarket. The cake is good plain, with whipped cream and fruit, or even toasted.

  • Ann

    It’s an auto-immune disease. Gluten triggers the destruction of the lining of the small intestine. So even if symptoms aren’t immediately obvious, gluten must be avoided.

    And people don’t understand. At a potluck I asked if there was wheat in a dish and she said “no”. Upon further questioning she said “oh, there is white flour, but not “wheat” flour”. Good thing I pursued the discussion.

  • Rebecca

    I had a friend with celiac visit and stay with me for about a week, and we mostly ate what I cooked. I had to do some research ahead of time, and I washed every utensil and pot and plate again before I used it just in case, but I saw the whole gluten-free cooking thing as an interesting challenge. I found my childhood experience keeping strict kosher to be very helpful in reading labels, since keeping kosher requires massive attention to ingredients and prevention of meat-dairy cross-contamination. I still use the coconut flour I got for her visit- makes awesome blueberry pancakes, great in cobblers and muffins. And chickpea flour makes a really nice addition to soups and sauces.

  • Britt

    For those of us with this issue, gluten can cause a lot of larger issues outside of the gastrointestinal discomfort (and by discomfort, I mean excruciating pain). Before I removed gluten from my diet, I had randomly become anemic, hypoglycemic, calcium deficient, and was prone to frequent, debilitating dizzy spells and fainting. My body was unable to absorb the nutrients I was putting in it. I was a regular blood donor who’d always had excellent iron counts and all of a sudden, even after eating ridiculous amounts of legumes and taking multivitamins, I was unable to get my iron high enough to donate. Within a week of removing gluten from my diet I felt incredible, and I haven’t experienced any of the above issues since.

    It’s not like lactose intolerance where if you eat a little, you’ll be uncomfortable for a few hours, but fine overall. In addition to the pain and other after-effects, ingesting gluten can cause nutritional deficiencies like the ones I experienced and can also increase your risk of other autoimmune diseases and various cancers. This is why it is so important that people with this condition not “cheat” and that it be taken very seriously by friends, family, and culinary professionals.

  • My Kitchen in the Rockies

    Unbelievable to me was, after a visit to a highly recommended internal specialist, being told, that celiac is not a “taught illness” in med school. She didn’t even take me seriously after suggesting to look into this possible cause. I have several friends that are diagnosed with this disease. Do they all make it up? I know they don’t. I am glad that the public awareness is growing. Thanks for this post.

  • Lori @ RecipeGirl

    I’m happy to see posts like this- sharing w/ the world exactly what it means to have to be gluten-free. My Mom was just diagnosed over the summer, and our whole family is having to learn about something we never thought we’d have to pay attention to. I can only imagine how frightening it is to go out to dinner and have to trust that the kitchen is educated enough on the matter to serve up things that will not get gluten-intolerant folks sick. Sounds like this is something they should definitely be covering in culinary school nowadays, as well as training in restaurants too.

  • nicola stockmann-tannerfors

    So amazing for someone to come out and just say it how it is. My son is gluten intolerant and so I have had to adjust to gluten free life and blog about it, in part because it’s therapeutic and in part because it might help someone else who faces the same hurdle. We eat out a lot less than we used to – and that’s with gluten intolerance, not full blown celiac disease. I think it’s amazing that you encourage people to keep living their life! Where there is a will there is always a way. Thank you.

  • Hajo

    Thank you so much for sharing this info and explaining to all non-experts what exactly celiac disease is. This is superb because well written and easy to understand for everyone. Being a positive person, the bight side is: celiacs don’t have to take any drugs but “only” change to a gluten-free diet. It’s definitely a change in life-style and a daily challenge but manageable.
    @Britt, a great source of Iron are Pumpkin seeds. They make a wonderful snack and are also very fitting for the Fall/Halloween season!

  • Ann

    It should also be mentioned, unless it already has, that reactions to gluten is not something acute to then go away. The very thin lining of the intestine is destroyed and can no longer absorb nutrients. Many with celiac are deficient in important nutritious components when they’re diagnosed. I was severly anemic (among other things).
    When I got on a gluten free diet my blood counts, etc., returned to normal. Yet, even when accidently, you eat something with gluten it WILL effect the lining and have a short-term impact AND a long term one. Of course it is less prominent (the long-term) if you are on a diet. Not carrying a serious adherence to your diet can also increase the risk of intenstinal/colon cancer. Don’t underestimate the condition.
    I adore restaurants (and chefs!) that get it right. Once we’ve been to one that does, we stick to it like glue (no pun intended). We do call ahead though. One pastry chef, like mentioned in the post), made gorgeous desert, and one chef personally came out to see that all was well. I adore how these chefs pay tribute to their craft, wanting all to have a good time!

  • Ann

    And on the topic of baking.
    I make a swiss roll, it uses potato starch, then you add you gluten free filling. Cut up, swirl some whipped cream on each slice and eat.

  • Selena Cate

    I’m one of those Celiacs that don’t have immediate symptoms. I actually find my form of celiac disease to be so frustrating because I really don’t know when I truly accidentally take in gluten. Sometimes it’s a headache, sometimes I know the next day but still am unsure and sometimes it may be a few days later when I feel like I’ve hit a wall and am trying to climb out of my cloud of depression. My only obvious symptom pre-celiac was that I was severely anemic. Thanks for raising more awareness to life gluten-free.

  • Victoria

    I have a good friend with celiac disease so I know how awful it is. Carol is really amazing in the way she handles it! Oh, well. She’s just plain amazing.

  • Susan

    Thanks for this post. This is such a serious disease and too many people just blow it off as an idea people make up to get attention or to make life difficult for others. I cooked for my late Mother in Law who also had dementia along with Celiac and it was no picnic (no pun intended!). Well meaning friends who had known her when she could eat anything, would innocently bring by goodies when they heard she was ill, as was custom among her set.. To complicated matters, MIL would forget she had Celiac and attempt to eat the goodies with her visitors, and at other times, whatever was available when she was feeling like a snack. Very difficult for caregivers to keep two sets of food in a house. Nursing homes and hospitals were a nightmare as well. The crossover contamination was the main problem, as the kitchen staff (with alot of turnover because of low wages) either weren’t trained thoroughly about the diseases potential problems with cross contamination or they just didn’t take it seriously. It’s difficult for those that are furiously busy and/or don’t have the disease to really wrap their head around how serious this is to the patient! In some places, the kitchens just weren’t equiped to handle special needs of Celiac disease and you are lucky if they say so, and don’t take you just to fill an empty bed.. Large institutional kitchens, even in health care facilities, sometimes, just aren’t a place that can accommodate the intricacies of this disease easily. I completely respect the chefs and cooks who take the time and effort to do so.

  • Susan

    Thanks for this post. This is such a serious disease and too many people just blow it off as an idea people make up to get attention or to make life difficult for others. I cooked for my late Mother in Law who also had dementia along with Celiac and it was no picnic (no pun intended!). Well meaning friends who had known her when she could eat anything, would innocently bring by goodies when they heard she was ill, as was custom among her set.. To complicate matters, MIL would forget she had Celiac and attempt to eat the goodies with her visitors, and at other times, whatever was available when she was feeling like a snack. Very difficult for caregivers to keep two sets of food in a house. Nursing homes and hospitals were a nightmare as well. The crossover contamination was the main problem, as the kitchen staff (with alot of turnover because of low wages) either weren’t trained thoroughly about the diseases potential problems with cross contamination or they just didn’t take it seriously. It’s difficult for those that are furiously busy and/or don’t have the disease to really wrap their head around how serious this is to the patient! In some places, the kitchens just weren’t equiped to handle special needs of Celiac disease and you are lucky if they say so, and don’t take you just to fill an empty bed.. Large institutional kitchens, even in health care facilities, sometimes, just aren’t a place that can accommodate the intricacies of this disease easily. I completely respect the chefs and cooks who take the time and effort to do so.

  • Stephanie - Wasabimon

    Like Selena, I have very different symptoms from Carol. I also can’t tell right away when I’ve been glutened – I’ll just start to feel tired, fatigued, airheaded and headachey anywhere from 3 hours to two days after I’ve eaten out. If I get enough in my system, my skin breaks out and I become exhausted and terribly depressed. I’ll also start to develop random sinus allergies, like I won’t be able to pet my cat and then touch my face without getting an obnoxiously runny nose.

    If I eat a loaf of bread, I feel like my IQ has temporarily dropped 10 points – I find myself getting lost easily and forgetting things. And while my digestion gets sluggish, it’s not nearly as acute as Carol’s.

  • Dr. Doug

    I am A physician and treat people with celiac disease. There are certainly variations in symptoms between people but this woman makes statement that simply are not true. Placing a burger on a bun and then serving it to her would not transfer gluten in any significant way. Wiping a plate with a towel that touched bread would also not cause a reaction. I would love to do a blinded test on this person to prove her wrong. This is the problem with people making blanket statements about thing they don’t really understand. Just because she believes it doesn’t make it true. Celiac disease is not an allergy, which can be severe with minimal contact to a given allergen. The most common of which may be latex allergy. Be careful what you believe when reported by people with an axe to grind.

    • Michael Goldberg

      Interesting that you should write this because, as a gastroenterologist, I thought this post was spot on and I’m thankful to have read it. Diagnosing celiac and gluten intolerance (vs. IBS) has been a challenge in my practice, but it’s something we’re seeing more and more often. I’m not sure why you would say that gluten isn’t transferred in the ways she’s experienced, because it most certainly is. Cross-contamination can happen on such a molecular level, I think most people would be surprised. In fact, one of my patients had to ask her husband to stop drinking beer when they went out so she could kiss him safely. Lucky for her (and their marriage), he agreed.

    • Kathleen

      “Dr.” Doug? Your link is a dead end. ahem….your “expertise” is suspect from my point of view.

    • Rebecca

      Dr. Doug, have a look at this study, where one patient showed a clinical relapse (symptoms) in a double-blind study with an ingestion of just 10mg of gluten daily:

      The safe threshold for gluten contamination in gluten-free products. Can trace amounts be accepted in the treatment of coeliac disease? Collin P, Thorell L, Kaukinen K, Mäki M. Aliment Pharmacol Ther. 2004 Jun 15;19(12):1277-83.

      That’s the equivalent of taking one roasted peanut (which weighs about 1 gram), dividing it into 100 equal pieces, and then eating just one piece.

      (In that study, they recommend keeping all foods below 20ppm of gluten, and even at that level (<50mg per day) some patients will still have internal damage and/or relapse of symptoms. To date, no study has found a minimum gluten level that is safe for every celiac.)

      There have been other studies that vary greatly, but this one stands out because it was double-blind.

      Anecdotally speaking, I can tell you that I once saw my 3 year old celiac son eat a few gluten-free pretzels out of a cup that had contained his sister's gluten-crackers and hadn't been washed out. (I didn't realize until after he had eaten them, but didn't say anything because I wanted to see if he would react if he wasn't aware of it.)

      45 minutes later, he was dead asleep on the couch (this was at 9 in the morning!) and he stayed asleep there for 4 hours, whereupon he woke up and ran to the bathroom. He had diarrhea for two days, and on the second day his typical gluten rash appeared faintly on his stomach and sides. In essence he had a "mini" reaction, with the same symptoms as usual but on a smaller scale. (A typical reaction for him if he ate a piece of bread, for example, would be diarrhea for about a week and a half, a rash all over his torso and arms and legs, and extreme drowsiness and lethargy, sometimes narcolepsy.)

      In addition, playing with regular playdough (which contains wheat) means diarrhea and the other symptoms, and he does not eat it. Whatever is under his fingernails is enough to make him very ill by the end of the day.

      Incidentally, he also has a life-threatening allergy to milk (casein), yet he has never had a reaction to a trace amount like he has to gluten.

      Believe what you want, but if it was your son, I can't imagine you'd be handing him a towel with breadcrumbs on it.

    • Misty

      Have to agree with the GI – This article is spot on, and you clearly have no idea what it is to actually live with celiac disease, nor how debilitating a simple crumb can be! Go spend a few weeks with patients, living their lives, walking in their shoes! Then get back to the subject!

  • Alice

    It’s true a lot of people misuse the term “allergy” in order to avoid eating things they don’t like. But there’s also a huge issue with this as well: I work in food service, and there is an attitude that if someone doesn’t like them, the waitstaff and cook staff don’t really “have” to care. But if someone is allergic, that’s lawsuit territory.
    It’s a general lack of respect, fora llergies or preferences.

    • Kendra

      I worked in restaurants for a few years, and I hear what you’re saying. It’s a slippery slope.

  • Dr. Doug

    Show me the study that molecular transfer of a gluten molecule can cause symptoms. Do you also still tell your patients with diverticulosis that they can’t eat popcorn,nuts’
    ,and seeds?

    • luis

      Easy doc. At my local upscale store and my local megamarket I see more and more glutten free stuff on the shelves. Where there is smoke there is fire. Explain yourself and what you know in a way that helps us understand this condition. In the end we may agree or disagree and that is ok. However all the glutten free foodstuffs I see at the markets indicate there is an issue. Wether it is a marketing issue or a health issue. It is big..BIG! and the symptoms Carolyn describes are unmistakable food poisoning issues.
      Very consistent and very scary stuff boss…..

    • Rebecca

      Dr. Doug, have a look at this study, where one patient showed a clinical relapse (symptoms) in a double-blind study with an ingestion of just 10mg of gluten daily:
      http://www.ajcn.org/cgi/content/abstract/85/1/160

      That’s the equivalent of taking one roasted peanut (which weighs about 1 gram), dividing it into 100 equal pieces, and then eating just one piece.

      (In that study, they recommend keeping all foods below 20ppm of gluten, and even at that level (<50mg per day) some patients will still have internal damage and/or relapse of symptoms. To date, no study has found a minimum gluten level that is safe for every celiac.)

      There have been other studies that vary greatly, but this one stands out because it was double-blind.

      Anecdotally speaking, I can tell you that I once saw my 3 year old celiac son eat a few gluten-free pretzels out of a cup that had contained his sister's gluten-crackers and hadn't been washed out. (I didn't realize until after he had eaten them, but didn't say anything because I wanted to see if he would react if he wasn't aware of it.)

      45 minutes later, he was dead asleep on the couch (this was at 9 in the morning!) and he stayed asleep there for 4 hours, whereupon he woke up and ran to the bathroom. He had diarrhea for two days, and on the second day his typical gluten rash appeared faintly on his stomach and sides. In essence he had a "mini" reaction, with the same symptoms as usual but on a smaller scale. (A typical reaction for him if he ate a piece of bread, for example, would be diarrhea for about a week and a half, a rash all over his torso and arms and legs, and extreme drowsiness and lethargy, sometimes narcolepsy.)

      In addition, playing with regular playdough (which contains wheat) means diarrhea and the other symptoms, and he does not eat it. Whatever is under his fingernails is enough to make him very ill by the end of the day.

      Believe what you want, but if it was your son, I can't imagine you'd be handing him a towel with breadcrumbs on it.

    • Rebecca

      Dr. Doug, have a look at this study, where one patient showed a clinical relapse (symptoms) in a double-blind study with an ingestion of just 10mg of gluten daily:

      The safe threshold for gluten contamination in gluten-free products. Can trace amounts be accepted in the treatment of coeliac disease? Collin P, Thorell L, Kaukinen K, Mäki M. Aliment Pharmacol Ther. 2004 Jun 15;19(12):1277-83.

      That’s the equivalent of taking one roasted peanut (which weighs about 1 gram), dividing it into 100 equal pieces, and then eating just one piece.

      (In that study, they recommend keeping all foods below 20ppm of gluten, and even at that level (<50mg per day) some patients will still have internal damage and/or relapse of symptoms. To date, no study has found a minimum gluten level that is safe for every celiac.)

      There have been other studies that vary greatly, but this one stands out because it was double-blind.

      Anecdotally speaking, I can tell you that I once saw my 3 year old celiac son eat a few gluten-free pretzels out of a cup that had contained his sister's gluten-crackers and hadn't been washed out. (I didn't realize until after he had eaten them, but didn't say anything because I wanted to see if he would react if he wasn't aware of it.)

      45 minutes later, he was dead asleep on the couch (this was at 9 in the morning!) and he stayed asleep there for 4 hours, whereupon he woke up and ran to the bathroom. He had diarrhea for two days, and on the second day his typical gluten rash appeared faintly on his stomach and sides. In essence he had a "mini" reaction, with the same symptoms as usual but on a smaller scale. (A typical reaction for him if he ate a piece of bread, for example, would be diarrhea for about a week and a half, a rash all over his torso and arms and legs, and extreme drowsiness and lethargy, sometimes narcolepsy.)

      In addition, playing with regular playdough (which contains wheat) means diarrhea and the other symptoms, and he does not eat it. Whatever is under his fingernails is enough to make him very ill by the end of the day.

      Incidentally, he also has a life-threatening allergy to milk (casein), yet he has never had a reaction to a trace amount like he has to gluten.

      Believe what you want, but if it was your son, I can't imagine you'd be handing him a towel with breadcrumbs on it.

  • Kevin

    With the holidays coming up, maybe this will be helpful to people with celiac and gluten problems (and they even address cross-contamination concerns — your tax dollars hard at work!). I found it helpful when trying to help make Thanksgiving dinner for our son’s wife last year:

    http://www.celiac.nih.gov/GlutenFreeHoliday.aspx

  • Joanna V

    Interesting the lack of agreement between medical experts as seen here – no wonder the average person is uncertain. I have a coworker with celiac who had it for many years before it was diagnosed – although she had many of the symptoms mentioned, including the intestinal distress, anemia, skin rashes, etc. She spent a week in the hospital having extensive tests and saw several specialists, including a doctor specializing in autoimmune diseases, who didn’t figure it out until she saw another doctor for a colonoscopy over a year later.

  • michelle gordon

    Nice article. I am gluten intolerant…so I just get sick for a few days, not all the other symptoms. However the stomach craps and trying to make it to the bathroom is sooooo much fun! If you ever visit Grand Rapids Michigan we have a bakery that is totally gluten free. She bakes nothing else but gluten free bakery items. Then on Friday’s she makes pizza for take out! The name of this wonderful place is Coco Charlotte. Since she has opened I have gained a few pounds, but that is okay, as I have not had cookies, muffins or cakes for the last 12 years till she opened, so I am good with the extra pounds!

  • Whineaux

    Thanks for this — I’m gluten intolerant, but not Celiac. I had no idea of the difference. I am uncomfortable but nothing like this. I now know to treat Celiac friends like my husband’s shellfish allergy. As always, I love your writing!

  • Ellendra

    I think too many stomach problems are misunderstood.

    I’ve been tested 18 times for gluten sensitivity, most of those by the same doctor who refused to believe that anyone could NOT be gluten intolerant. Even though the tests came out negative, I went a month with no gluten whatsoever just because she insisted that was it. Didn’t make any difference.

    I had another doctor who insisted that any digestive problem was “just stress”, I nearly died of blood loss and malnutrition before a different doctor found the problem. It seems I’m missing a couple of enzymes needed to digest plant-based foods, so the “healthier” I tried to eat, the worse I got. Yes, I am biologically a carnivore!

    Fortunately, the same doctor who tested me for gluten sensitivity every which way from sunday, also pointed me toward some OTC digestive aids that included the missing enzymes, so I can now enjoy my berries again :)

    I have a friend who could eat tin cans and raw asbestos and not suffer in the least for it. I’m so jealous.

  • Gabriella

    And Milk does the same thing to my son. He has leaky gut bc of his Autism and we are casein, gluten, soy and egg free.

  • B

    Great post, good to see this issue getting some attention.

    I was aware of celiac but never knew any details until a friend moved in for a few months this year. We have regular “family dinner night” in the house and label-checking for wheat/gluten was a shock — sort of like the first time you become conscious of HFCS and then realize it’s in almost everything. I actually enjoyed the challenge of cooking gluten-free, and it opened my eyes to a few ingredients I never would have stocked otherwise, and still do even though she’s moved out.

    Great read.

  • Victoria

    Dr. Doug
    I am A physician and treat people with celiac disease. There are certainly variations in symptoms between people but this woman makes statement that simply are not true. Placing a burger on a bun and then serving it to her would not transfer gluten in any significant way. Wiping a plate with a towel that touched bread would also not cause a reaction. I would love to do a blinded test on this person to prove her wrong. This is the problem with people making blanket statements about thing they don’t really understand. Just because she believes it doesn’t make it true. Celiac disease is not an allergy, which can be severe with minimal contact to a given allergen. The most common of which may be latex allergy. Be careful what you believe when reported by people with an axe to grind.

    Really?? I think it is a “it may not. but it COULD” is supposed to be what this is trying to tell people.

    • Rhonda

      DR. DOUG et al…

      I intend this statement with the utmost DISRESPECT to the hacks in the medical community who can pass tests in school yet cannot seem to listen to their patients who come in and say they are sick.

      You obviously missed something when you took the Hippocratic Oath (perhaps you were in the same graduating class as my physician).

      I will not go into what happened to me this last month due to NOT FUCKING LISTENING TO WHAT YOUR PATIENT IS TELLING YOU.

      My lawyers will do that…

      It had nothing to do with gluten but throwing around prescription drugs that young 20 something year old blonde female salesman in short skirts sell you and pay you for passing on to your patients.

      How, in this day and age can you be so fucking clueless is not only astounding but astonishingly frightening.

      Get your head out of your fucking asses. Stop pushing prescription drugs. Listen to your patients. They are not making this up. I don’t give a fuck if your Biochemistry 101 class says these symptoms are impossible. They are. They are real.

      Make Daddy’s money count. Do something more with your Medical Degree other than learning how to push Drugs.

      For us, who know better; Michael, I am convinced Gluten allergies are due to “Franken Wheat” that was developed that doesn’t die when doused with pesticides. Our bodies can’t process this. They weren’t made to do so and now there is Celiac. This disease wasn’t prominent 20 years ago, In fact, it really didn’t exist. It blossomed with genetic engineering of wheat (total coincidence -FM!)

      I made initial contact with Marion Nestle. Got busy, couldn’t follow up.

      You are now famous and have Street Cred. She would definitely return your calls.

      As for Doctors who do not listen to their patients… Well, buckle down and lawyer up.

      Bon Chance.

      - R

  • Mantonat

    The genetic link is obvious in my wife’s family. Her mother, grandfather, and all of her uncles and aunts on that side were diagnosed with Celiac disease years ago and have dealt with it since the early 1990s, when GF products were rare and most restaurants were completely unfamiliar with the disease. My wife was diagnosed this year after suffering for quite some time; she just didn’t want to hear the news and so avoided getting tested. Now that she is on a GF diet, she can’t believe she ever put up with the symptoms for so long. She is much happier, healthier, and at peace even though she misses foods that just can’t be replicated – like beer, croissants, and a good flaky pie crust.
    I do alot of the cooking in our house and I am pretty surprised at how easy it is to cook gluten-free. We don’t buy much processed food and I have been experimenting with GF baking, and we have also been tremendously inspired by Carol’s creativity and expertise on the Alinea at Home blog.
    Our friends are very understanding and go out of their way to test GF recipes when we come over for dinner. It can be very difficult avoiding gluten, especially in a world where she is considered merely a “picky eater” and where there is no medicine for the disease, but the positive news about Celiac disease is that those diagnosed can lead a healthy, symptom-free life by remaining vigilant.

  • Kris

    I’m diabetic, and eating gluten-free is a necessity for many of us with diabetes (glycemic control). My sister has celiac, and can’t eat gluten. And I’ve noticed how much easier it is for me to be accommodated in restaurants when I explain that the reason I don’t eat gluten is because I have diabetes. Whereas my sister is treated much differently because people don’t really know what celiac is or understand it. It’s not fair.

  • Kathy

    One reason there may not be a study showing cross contamination is a problem is that no one with celiac is willing to be part of the study because they know what even a little gluten will do to them. I tend to believe those that suffer from the disease. Just because a study does not exist does not mean it isn’t true for extremely sensitive celiacs who are the ones who would never intentionally gluten themselves.

  • Jessica

    I love that she wrote the things about Celiac others are afraid to say. It really is not a pretty situation when one of us gets glutened. Each of us might react in a different way; no matter if it is migraines within 30 minutes of being glutened, or the run to the bathroom “I might go in my pants” glutened. Either way, it is not fun. Thank you for posting this interview so others out there can take cross contamination seriously!

  • Sharon

    Dr. Doug – if you are so certain that crumbs are not dangerous, can you explain why other countries have established a guideline of less than 20 ppm (that’s right – parts per million) for labeling something gluten free in the store? And your blind test is exactly what every person with Celiac endures each time they eat at a restaurant. They are always gambling – hoping that the chef, servers, etc. got it right. And sometimes it becomes abundantly clear through the not-at-all-subjective appearance of symptoms that someone messed up…. My family (myself, plus 3 celiacs) does venture out to a restaurant now & then, but we’ve found it to be risky – none of them enjoy the aftermath of being glutened.

  • tartare

    Celiac is a very serious condition, but there is some argument to be made that most of the population is gluten intolerant to some extent. Many professional athletes avoid it as it is known to cause inflammation in the most people. Chronic inflammation can lead to more serious future auto immune diseases. Interestingly enough, some of the old fashioned cooking techniques naturally minimize gluten in certain otherwise gluten rich foods, such as bread. Sourdough rye made from real sourdough starter and not with yeast, is a much better alternative for your digestive system than regular bread. Nowadays gluten is used as an inexpensive binder in so many foods, often with confusing labels.

    Still, personally, I have found that I have done much better avoiding grains in general, including refined carbohydrate “substitute” foods that may be gluten free but still arguably take a serious toll on your system with heavy doses of refined carbohydrates.
    Animal fat has been demonized for so long in our society and whole grains promoted as uber healthy, but I’m personally not sure that holds much water. Seems like the food pyramid is upside down and my blood tests would have to agree. How can eating a diet high in animal fats, proteins and glorious butter and almost no grains work so well?

    Don’t get me wrong, brioche and a good chocolate croissant are some of my favorite foods, but I have started to see these things as a twice a year treat as opposed to something I can eat regularly. Having worked in restaurants for years, I hope Celiac patients know that many of us do take your issues seriously and personally. Best wishes to those battling celiac disease, diabetes and other serious auto immune issues.

    • Alain

      Hello Tartare

      You say: “Sourdough rye made from real sourdough starter and not with yeast, is a much better alternative for your digestive system than regular bread. ”

      For your information, rye also contains gluten so it’s a no go for Celiac disease sufferers.

      Alain

  • Adriana

    Interesting article and very interesting comments. Coeliac Disease is never straightforward. So much is still unknown. My own daughter was diagnosed at 17 months, Her journey inspired me to write a cookbook, full of family friendly foods. She’s now 7, very healthy, tall and incredibly robust. Eating out (in the UK) is still difficult and a nerve wracking experience most of the time. When we do find a restaurant that goes the extra mile and is knowledgeable and informed about the condition, we go back again and again. And much to my family’s embarrasment, I do ask to speak to the chef and the kitchen staff and thank them personally. I think this is the best way of motivating them to 1) cater for gluten free diets 2) eyeball the person with the condition….if they really have not taken it seriously, they will be haunted by that bright little face, smiling and shaking their hand!

    On the recipe, I have a question which I hope someone can answer. It lists cornflour and cornstarch as separate ingredients. I always thought these were one and the same and the name interchangeable. Please can someone clarify? I know there is a difference between Potato flour and Potato Starch, but I didn’t know this was also the case with corn.

  • Shauna

    Thank you so much for the interview and putting this up!

    It’s so very frustrating when people don’t realize just how much damage eating gluten can do to those of us who have Celiac Disease. And Carol was just discussing the short term difficulties, not even the long term difficulties.

    Because Celiac Disease is an auto-immune disease, that means when gluten triggers it, this leaves a celiac auto-immune compromised for a short period. We are more vulnerable to serious diseases, which means if we ingest gluten and then, say, catch the flu, we are likely to have more serious complications because our immune system can’t cope like it should.

    • Adriana

      Hi Shauna, would you mind clarifying my query on your recipe….what’s the difference between cornflour and cornstarch….I thought they were one and the same. thanks. Adriana

  • luis

    Erin… Looking at this in a personal way I/others can totally understand how you feel placed in that unconfortable position.

    As a customer a waiter should never place you in that embarrasing position.

    But you know all Carol\you need’s to say to a nosy waiter is gluttened food can give her/you food poisoning and most folks would immediatelly get it!. Specially profesionals in food biz… Enough said.

  • Shirley @ gfe

    First, thanks so much, Michael & Carol, for sharing this excellent interview. I’m convinced that it’s the personal stories that are being shared that are getting the numbers of those diagnosed to increase. Folks are recognizing themselves in others’ stories, doing some research, and going to their doctors armed with info and requesting (sometimes demanding) celiac testing. This turn of events is crucial because medical textbooks still contain false info on celiac and doctors (even gastroenterologists) still think celiac is a rarity and/or only look for one set of symptoms. As a result of the increased awareness through blogs, forums, and more articles in publications (even bad articles in some cases), more and more folks are getting diagnosed.

    There’s more to gluten issues than just celiac though as some comments have mentioned, but that’s too big a topic to discuss here. I will just say that one doesn’t have to have celiac to have gluten-caused anemia, depression, osteopenia/osteoporosis, fatigue, and much more.

    With celiac/gluten intolerance, the symptoms of being glutened can change over time. My first symptoms used to be the bathroom issues. Now my first symptom could be a headache, brain fog, body aches like flu, joint pain, etc. One celiac spokesman from the U of Chicago Celiac Center said that continued diarrhea as a gluten reaction means the individual is still getting gluten in one’s diet. I’m not sure, but I know that after 7 years of being gluten free, diarrhea is no longer my typical reaction. One of the most amazing things about going gluten free is finding out exactly how many of the symptoms/issues that one has experienced have actually been driven by celiac/gluten intolerance. The healing and resolution of these symptoms/issues can take time, but one can feel like one has a whole new body in the end! Often this transformation comes after living so unwell each day that one can’t even remember how it feels to actually feel well. And, it all comes from just eating real food that does not contain gluten–beautiful!

    Thanks again, Michael, and thanks so much for the kind mention, too.

    Shirley

  • shauna

    Thank you so much, Carol and Michael. Carol, your candor has opened the eyes of many people here and will continue to do so. You know I love your language and your bravery.

    And Michael, thanks for tackling this when so many folks in the food world and mainstream media want to wave away the idea that gluten could make so many of us this sick. It’s easier to think that this is a celebrity fad than deal with the systemic changes we need to make.

    For those who doubt, I can confirm (as can many others) that what Carol wrote is no exaggeration. Who would want these symptoms and thus make them up? If my husband drinks a beer and kisses me passionately, I’ll get sick for three days. It doesn’t take much to make the celiac sick.

    (And it’s my understanding that the damage on the intestinal level is the same for those who suffer from it outwardly and those whose outward symptoms are more silent.)

    Adriana, you asked about cornflour. I gather from the “coeliac” spelling that you are from Great Britain or Ireland. There, I know, what we call cornstarch is called cornflour. Here, they are different beings. Cornstarch is the starch extracted from corn. Cornflour is dehydrated corn that has been ground into a flour. (And in fact, the potato starch and potato flour difference is very similar.) Cornflour is a great ingredient in many gluten-free baked goods.

    We hope that everyone enjoys the pizza!

    • Adriana

      Hi Shauna, would you mind clarifying my query on your recipe….what’s the difference between cornflour and cornstarch….I thought they were one and the same. thanks. Adriana

      Just saw your post, so sorry for repeating, But still not sure what to do. I do live in England and the stuff in the box in my pantry is called ‘cornflour’….so this is actually cornstarch? Could I substitute something else for the cornflour element or should I just use the stated amount of starch and flour combined. The same problem occurs with potato starch and potato flour….even the manufacturer can’t tell me which is which….

  • Bakingbarb

    Thank you Michael for taking this serious and giving Carol the place to explain in detail what really happens. So many people just don’t get it, I will be reposting this everywhere. Carol says what needed to be said and people do need to be made aware. I am on day 3 of my accidental consumption of wheat, what Carol says is a fact that so many of us have to deal with too often.

    I applaud you for spelling it out.

  • Roshni

    I stubbled across this blog in search of a Celiac Organization in my area. I don’t have Celiac, but I do own a pizzeria in (North) Fontana, California (US). In addition to our healthier choice pizzas, we just started to carry gluten free pizza crust and are now offering a wide variety of gluten free options with our salads, gelato, sorbets and beer.
    Carol – your description of being “glutened” is perfect – it’s exactly how it should be put to get your point across. I actually will be printing your post for my staff to read – people do tend to underestimate how serious cross-contamination is. Thanks for putting it out there.

  • Fran

    This post was so informative. Now I “get” it! I hope more people read this and understand. Thanks for getting this posted.

  • Ann Flaherty

    Thanks for the great article. I will be sure to share it! I’ve made Shauna’s pizza crust and it is wonderful…it’s so nice when we are offered alternative recipes to the old standby comfort foods. Also, whenever I head up to Massachusetts, I am sure to go to Burton’s Grill. They have an extensive mouth watering gluten free menu. My understanding is that one of the owners has Celiac disease, hence they pay great attention to caring us!

  • Chris James

    Fantastic post Michael. This is a must read for any person working in the restaurant business and anybody who doubts the seriousness of celiac disease. A huge thank you for your willingness to post the graphic descriptions of what happens to celiacs when they get sick.

  • Trish W

    To the supposed “DR DOUG”
    If you are truly a physician as you claim to be you should be taking notes on what ppl are saying regarding this post instead of trying to dismiss the symptoms as physicians tend to do. I can tell you that my 12yr old who was diagnosed with Celiac 11 months ago has SEVERE reactions when her food is cross-contaminated. If she has a salad that is made in a bowl where croutons were mixed in previous salads she has stomach & headaches for 2-3 days. This is not a fabrication of any means. When you remove the gluten completely from the diet even the most insignificant amount causes the body to react. Why do you feel the need to combat what a patient tells you? If you don’t have the disease you have NO FIRST HAND KNOWLEDGE how dare you dismiss those that experience living with it on a daily basis!!! I personally was diagnosed 7yrs ago and my symptoms (muscle fatigue/tingling in extremeties/depression/mood swings/loss of hair/fatigue) are completely different than those of either of my children (1 has stomach issues and Asthma, the other ADHD & muscle fatigue) or my mother (dental, sinus & stomach problems) who also has it. Just because the body reactions are not what you’d consider ‘textbook’ does not give you the right to state that the are not a reaction! Too bad your patients aren’t aware of your views as I’m sure they’d quickly be looking for another Doctor!

  • Rebecca

    Dr. Doug, have a look at this study, where one patient showed a clinical relapse (symptoms) in a double-blind study with an ingestion of just 10mg of gluten daily:
    link

    That’s the equivalent of taking one roasted peanut (which weighs about 1 gram), dividing it into 100 equal pieces, and then eating just one piece.

    (In that study, they recommend keeping all foods below 20ppm of gluten, and even at that level (<50mg per day) some patients will still have internal damage and/or relapse of symptoms. To date, no study has found a minimum gluten level that is safe for every celiac.)

    There have been other studies that vary greatly, but this one stands out because it was double-blind.

    Anecdotally speaking, I can tell you that I once saw my 3 year old celiac son eat a few gluten-free pretzels out of a cup that had contained his sister's gluten-crackers and hadn't been washed out. (I didn't realize until after he had eaten them, but didn't say anything because I wanted to see if he would react if he wasn't aware of it.)

    45 minutes later, he was dead asleep on the couch (this was at 9 in the morning!) and he stayed asleep there for 4 hours, whereupon he woke up and ran to the bathroom. He had diarrhea for two days, and on the second day his typical gluten rash appeared faintly on his stomach and sides. In essence he had a "mini" reaction, with the same symptoms as usual but on a smaller scale. (A typical reaction for him if he ate a piece of bread, for example, would be diarrhea for about a week and a half, a rash all over his torso and arms and legs, and extreme drowsiness and lethargy, sometimes narcolepsy.)

    In addition, playing with regular playdough (which contains wheat) means diarrhea and the other symptoms, and he does not eat it. Whatever is under his fingernails is enough to make him very ill by the end of the day.

    Believe what you want, but if it was your son, I can't imagine you'd be handing him a towel with breadcrumbs on it.

  • Rebecca

    Dr. Doug, have a look at this study, where one patient showed a clinical relapse (symptoms) in a double-blind study with an ingestion of just 10mg of gluten daily:
    http : // http://www.ajcn.org/cgi/content/abstract/85/1/160

    [remove the spaces - the URL seemed to break the comment system.]

    That’s the equivalent of taking one roasted peanut (which weighs about 1 gram), dividing it into 100 equal pieces, and then eating just one piece.

    (In that study, they recommend keeping all foods below 20ppm of gluten, and even at that level (<50mg per day) some patients will still have internal damage and/or relapse of symptoms. To date, no study has found a minimum gluten level that is safe for every celiac.)

    There have been other studies that vary greatly, but this one stands out because it was double-blind.

    Anecdotally speaking, I can tell you that I once saw my 3 year old celiac son eat a few gluten-free pretzels out of a cup that had contained his sister's gluten-crackers and hadn't been washed out. (I didn't realize until after he had eaten them, but didn't say anything because I wanted to see if he would react if he wasn't aware of it.)

    45 minutes later, he was dead asleep on the couch (this was at 9 in the morning!) and he stayed asleep there for 4 hours, whereupon he woke up and ran to the bathroom. He had diarrhea for two days, and on the second day his typical gluten rash appeared faintly on his stomach and sides. In essence he had a "mini" reaction, with the same symptoms as usual but on a smaller scale. (A typical reaction for him if he ate a piece of bread, for example, would be diarrhea for about a week and a half, a rash all over his torso and arms and legs, and extreme drowsiness and lethargy, sometimes narcolepsy.)

    In addition, playing with regular playdough (which contains wheat) means diarrhea and the other symptoms, and he does not eat it. Whatever is under his fingernails is enough to make him very ill by the end of the day.

    Believe what you want, but if it was your son, I can't imagine you'd be handing him a towel with breadcrumbs on it.

  • Rebecca

    Dr. Doug, have a look at this study, where one patient showed a clinical relapse (symptoms) in a double-blind study with an ingestion of just 10mg of gluten daily:
    http://www.ajcn.org/cgi/content/abstract/85/1/160

    That’s the equivalent of taking one roasted peanut (which weighs about 1 gram), dividing it into 100 equal pieces, and then eating just one piece.

    (In that study, they recommend keeping all foods below 20ppm of gluten, and even at that level (<50mg per day) some patients will still have internal damage and/or relapse of symptoms. To date, no study has found a minimum gluten level that is safe for every celiac.)

    There have been other studies that vary greatly, but this one stands out because it was double-blind.

    Anecdotally speaking, I can tell you that I once saw my 3 year old celiac son eat a few gluten-free pretzels out of a cup that had contained his sister's gluten-crackers and hadn't been washed out. (I didn't realize until after he had eaten them, but didn't say anything because I wanted to see if he would react if he wasn't aware of it.)

    45 minutes later, he was dead asleep on the couch (this was at 9 in the morning!) and he stayed asleep there for 4 hours, whereupon he woke up and ran to the bathroom. He had diarrhea for two days, and on the second day his typical gluten rash appeared faintly on his stomach and sides. In essence he had a "mini" reaction, with the same symptoms as usual but on a smaller scale. (A typical reaction for him if he ate a piece of bread, for example, would be diarrhea for about a week and a half, a rash all over his torso and arms and legs, and extreme drowsiness and lethargy, sometimes narcolepsy.)

    In addition, playing with regular playdough (which contains wheat) means diarrhea and the other symptoms, and he does not eat it. Whatever is under his fingernails is enough to make him very ill by the end of the day.

    Believe what you want, but if it was your son, I can't imagine you'd be handing him a towel with breadcrumbs on it.

  • Rebecca

    Dr. Doug, have a look at this study, where one patient showed a clinical relapse (symptoms) in a double-blind study with an ingestion of just 10mg of gluten daily [remove spaces]:
    www . ajcn . org / cgi / content / abstract / 85 / 1 / 160

    That’s the equivalent of taking one roasted peanut (which weighs about 1 gram), dividing it into 100 equal pieces, and then eating just one piece.

    (In that study, they recommend keeping all foods below 20ppm of gluten, and even at that level (<50mg per day) some patients will still have internal damage and/or relapse of symptoms. To date, no study has found a minimum gluten level that is safe for every celiac.)

    There have been other studies that vary greatly, but this one stands out because it was double-blind.

    Anecdotally speaking, I can tell you that I once saw my 3 year old celiac son eat a few gluten-free pretzels out of a cup that had contained his sister's gluten-crackers and hadn't been washed out. (I didn't realize until after he had eaten them, but didn't say anything because I wanted to see if he would react if he wasn't aware of it.)

    45 minutes later, he was dead asleep on the couch (this was at 9 in the morning!) and he stayed asleep there for 4 hours, whereupon he woke up and ran to the bathroom. He had diarrhea for two days, and on the second day his typical gluten rash appeared faintly on his stomach and sides. In essence he had a "mini" reaction, with the same symptoms as usual but on a smaller scale. (A typical reaction for him if he ate a piece of bread, for example, would be diarrhea for about a week and a half, a rash all over his torso and arms and legs, and extreme drowsiness and lethargy, sometimes narcolepsy.)

    In addition, playing with regular playdough (which contains wheat) means diarrhea and the other symptoms, and he does not eat it. Whatever is under his fingernails is enough to make him very ill by the end of the day.

    Believe what you want, but if it was your son, I can't imagine you'd be handing him a towel with breadcrumbs on it.

  • Rebecca

    Dr. Doug, have a look at this study, where one patient showed a clinical relapse (symptoms) in a double-blind study with an ingestion of just 10mg of gluten daily:

    The safe threshold for gluten contamination in gluten-free products. Can trace amounts be accepted in the treatment of coeliac disease? Collin P, Thorell L, Kaukinen K, Mäki M. Aliment Pharmacol Ther. 2004 Jun 15;19(12):1277-83.

    That’s the equivalent of taking one roasted peanut (which weighs about 1 gram), dividing it into 100 equal pieces, and then eating just one piece.

    (In that study, they recommend keeping all foods below 20ppm of gluten, and even at that level (<50mg per day) some patients will still have internal damage and/or relapse of symptoms. To date, no study has found a minimum gluten level that is safe for every celiac.)

    There have been other studies that vary greatly, but this one stands out because it was double-blind.

    Anecdotally speaking, I can tell you that I once saw my 3 year old celiac son eat a few gluten-free pretzels out of a cup that had contained his sister's gluten-crackers and hadn't been washed out. (I didn't realize until after he had eaten them, but didn't say anything because I wanted to see if he would react if he wasn't aware of it.)

    45 minutes later, he was dead asleep on the couch (this was at 9 in the morning!) and he stayed asleep there for 4 hours, whereupon he woke up and ran to the bathroom. He had diarrhea for two days, and on the second day his typical gluten rash appeared faintly on his stomach and sides. In essence he had a "mini" reaction, with the same symptoms as usual but on a smaller scale. (A typical reaction for him if he ate a piece of bread, for example, would be diarrhea for about a week and a half, a rash all over his torso and arms and legs, and extreme drowsiness and lethargy, sometimes narcolepsy.)

    In addition, playing with regular playdough (which contains wheat) means diarrhea and the other symptoms, and he does not eat it. Whatever is under his fingernails is enough to make him very ill by the end of the day.

    Believe what you want, but if it was your son, I can't imagine you'd be handing him a towel with breadcrumbs on it.

  • Rebecca

    Sorry for the quadruple post. Kept getting an error message that looked like it was bouncing my comments back!

  • Michelle Kazukaitis

    Great Article. If you have food allergies or intolerances, including IBS & Fructose Malabsorption, check out http://www.theallergymenu.com. We live to serve foodies with allergies and intolerances, providing tasty and delicious recipes, the latest research and resources to make living with allergies a breeze! Take a look! :)) Michelle

  • Lauren

    Such an important post. My reactions are much different, but that just illustrates how essential it is for chefs to be aware, as they don’t know what distress they could be causing with carelessness. I’ve found restaurants have gotten better and better in the past few years, which makes it more fun on the occasions when we go out. At the same time we’re quite loyal to those that always take care of me. It’s always such a joy to have a truly great meal out, under the hand of those who care deeply, regardless of your restrictions.

  • Misty

    Have to agree with the GI re Dr Doug’s comment! – This article is spot on, and you clearly have no idea what it is to actually live with celiac disease, nor how debilitating a simple crumb can be! Go spend a few weeks with patients, living their lives, walking in their shoes! Then get back to the subject!

  • Misty

    Michael & Carol
    Thank you so much for this blog!
    Yes, Celiac disease is serious! Not only does it cause intestinal difficulties as Carol described, and immediate flu like symptoms that others have mentioned, it has many other symptoms that can be associated with it, thanks to malnutrition. In addition, I know several loved ones, who within a short time of consuming even small “cross-contamination amounts” of gluten become very angry and short tempered, then depressed & suicidal, and finally exhausted & fatigued, in addition to the physical symptoms of diarrhea, cramping, etc. My husband happens to be one such Celiac sufferer. Let me tell you – it is VITAL to our family’s emotional safety & sanity for him to not be cross contaminated!!!

    In addition to “short term” effects of gluten on a person with Celiac disease – there are also huge increase of risk for other, more debilitating, long lasting and even deadly diseases. These include: various Neurological Manifestations – including neuropathy, Ataxia, Epilepsy, Migraines, etc.; CANCER! ; Osteoporosis; Depression; Diabetes; Infertility; and many other Autoimmune diseases, including Lupus, RA, MS; as well as other disorders and syndromes – ADHD, Raynaud’s, Thyroid disease, Dental Enamal Defects and Genetic disorders…. (Celiac Disease – A Hidden Epidemic by Peter R.H. Green M.D., Director of the Celiac Disease Center at Columbia University, and by Rory Jones)

    Again, thank you for raising awareness! My husband’s entire family of 4 siblings, as well as my children have Celiac disease. Going out to eat is like playing Russian roulette. Thank you for making that just a little less risky!!

  • Rebecca

    One more interesting link for Dr. Doug:
    “It appears the extent to which gluten must be excluded from the diet varies between CD individuals with highly sensitive individuals difficult to study. They do not tolerate, and are possibly deterred by, an extended gluten challenge.”
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2582232/

  • Misty

    Adriana,
    Corn flour is basically cornmeal ground to flour consistency.
    Here’s a link to Amazon entry for Bob’s Red Mill GF Corn Flour:
    http://www.amazon.com/Bobs-Red-Mill-Gluten-Packages/dp/B002NM1S1I/ref=sr_1_2?ie=UTF8&qid=1287979325&sr=8-2
    I purchase all of my GF flours in 25 lb bags from Bob’s Red Mill – Here is their direct website: http://www.bobsredmill.com/

    Corn Flour is also known as Masa Harina corn flour or just Masa, which is traditionally used to make corn tortillas, and is usually treated with lime in a process called nixtamalization, which makes the corn more easily digestible. (in fact, in areas where corn is a staple, the absence of nixtamalization of the corn products can cause severe malnutrition.) For a brief overview, see wikipedia’s entry – http://en.wikipedia.org/wiki/Nixtamalization
    Here’s a link to Amazon Mesaca brand corn flour which has been treated with lime:
    http://www.amazon.com/Maseca-Corn-Flour-4-4-lbs/dp/B0000IJYK4/ref=sr_1_1?ie=UTF8&qid=1287979325&sr=8-1
    and Masa for Tamales which is slightly more course
    http://www.amazon.com/Maseca-Corn-Masa-Tamales-pounds/dp/B0000IJYKE/ref=pd_sbs_gro_1
    These are the two I use, because they have been nixtamalized, and because they are very inexpensive, and readily available in the “international” areas of all local grocery stores in the US, particularly in the Mexican/Hispanic sections.

    I hope this gives you a good place to start in your search for local corn flour!

  • Catherine N.

    Thank you for a wonderful post. To “Dr Doug”, I have been made very very ill by just a few breadcrumbs. You cannot be ‘too careful’ when it comes to celiac disease. Even though she was never diagnosed with celiac, I believe it contributed to my paternal grandmother’s death from intestinal cancer. And I second the chorus that greatly appreciates restaurants that take care and don’t gluten you. Its wonderful to go out to eat, to date, and know you are in a place that will serve you safe food.

  • Marian

    This is a great post and as the mom of a celiac child, I appreciate the frankness. We’re terrified to eat out, and while my son is little, I almost always just bring him his meals when we eat out, visit family, to school, on road trips, etc. When that is no longer acceptable to him, I hope to find restaurants to be better informed and better equipped to isolate food prep and be aware of cross contamination. Celiac is a great market for food establishments to corner, if they do it right. Eating close to the earth is key, shop on the outer edges of the supermarket (produce, meats, yogurts/cheeses, and nature’s market). I educate everyone around us by emailing my “info packet” on my son to them, and then staying in touch with classmates’ parents, teachers, friends, etc. about his needs. Thanks for raising more awareness!

  • Deborah Lindsay

    FYI, Chef Richard Coppege, CMB, CIA instructor and baker extraordinaire (chocolate cherry sour dough bread!) has a book out on gluten free baking which features several formulas for gluten free flours for different applications. Have not tried it but his reputation is first rate.

  • mary

    ginger
    it’s so nice to hear someone else speak frankly of the symptoms of celiac, I share the same symptoms as well as the same zest for life, cooking and dining out. thanks for posting this interview! (and the pizza dough recipe)

    You can also be asymptomatic and still have celiac. My Celiac is mainly silent unless I eat bread and haven’t in six years. I experienced pain in my stomach, bloating and nausea. I once mixed up my pasta with regular pasta and became very nauseated.

  • bill bush

    Thanks for teaching me so much about this. I’ve dealt with my son’s latex allergy (fatal shock/no breathing/throat swollen shut if not treated immediately) and my wife’s recently developed shellfish allergy, so I appreciate the increased awareness for the public about the real seriousness of allergies. I have had people tell me that “there is no such thing as being allergic to balloons” as if they were some sort of judges of probably hysterical precautions. We still ask to see the box of gloves the servers are using before eating at a restaurant. Thanks again.

  • Victoria

    Oh my word…. I made the pizza crust recipe tonight, and even minus the guar gum and with what I think was some half-dead yeast…. it has made this Chicago (wheat allergic) girl very, very happy.

  • Leslie

    Thanks for this post. I literally smacked my hand to my head when I read your symptoms! I have all the same symptoms! I couldn’t figure out why I felt so sick all the time. I saw a gastroenterologist a few months ago who told me that I had IBS and to eat more fiber…so I went on a whole wheat diet thinking that would fix the issue…well, that didn’t work and I was feeling worse. I went for some other tests, (I was having pain in my legs and feet) and the podiatrist sent me to a neurologist who ran some blood tests and found out that I have a severe B12 deficiency. Well with some research on my end, found out one of the reasons is Celiac disease. So I did more research and found out that I have almost all the symptoms and when I just read your post, I literally couldn’t believe it. Since I found out that I was low on B12, I decided to do my own test and have been living gluton-free for about 10 days. WOW what a difference and I noticed it right away. Its scary how even my gastroenterologist didn’t think to ask about symptoms or try to test for it..I know it is hard to diagnose. But its scary b/c I was eating more wheat…when I should have been eating none. I don’t have a “official” diagnoses but I know how I feel and by eliminating gluton, has made a world of difference. And knowing what others have been going through and their symptoms have been the same helps me to know that I am not crazy and that my foggy head is curable. And the rash with the tiny bumps, makes so much more sense. So thanks again for the post and telling it like it is. It so much more helpful knowing and sharing with others who are going through the same thing.

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