For years, medical students were taught that celiac disease was extremely rare. In this condition, the protein in wheat, barley and rye (gluten) triggers an autoimmune response that destroys the intestinal lining.

People with celiac disease develop a range of symptoms when they eat foods made with flour such as bread, pancakes, pretzels, pizza or pasta. Drinking beer can also trigger problems.

Some individuals experience digestive upset. Gas, bloating, heartburn, cramping and diarrhea are not uncommon. Fatigue and anemia are also complications of this disorder. Migraine headaches, osteoporosis, neuropathy, cognitive impairment and even cancer can be long-term consequences of celiac disease.

Now physicians are recognizing that celiac disease should not be considered rare. Blood tests reveal that as many as one American in 130 or so may have it, although many are undiagnosed (American Journal of Gastroenterology, online March 1, 2011).

Some patients have become frustrated in trying to find the source of their symptoms, however. Despite difficulties that would suggest celiac disease, blood tests may come up negative. Here is how one reader describes her experience:

“I am 33 years old and for years I have suffered from irritable bowel syndrome (IBS) with diarrhea, chronic fatigue, hair loss, Raynaud’s phenomenon, fibromyalgia, peripheral neuropathy, iron deficiency anemia, polycystic ovaries and arthritis pain in my back. I was diagnosed with all of those things separately.

“Doctors were puzzled about these ailments because I was so young. They looked for lupus, rheumatoid arthritis, multiple sclerosis and other diseases but all the tests were negative.

“Recently, I learned about celiac disease and gluten-free (GF) diet. I had the blood test for celiac and it was negative, but I went ahead and started following the GF diet.

“In the two weeks since I began GF, my IBS symptoms have disappeared! My fatigue is lessened. My hair loss is decreasing. I am taking fewer anti-inflammatory medications.

“I have told my sister about it since celiac disease is hereditary. She is 37 and was diagnosed with thyroid disease and early-onset osteoporosis as well as severe migraines. All of those could be symptoms of celiac. Our mother has terminal adenocarcinoma and most of her life she struggled with fibromyalgia and IBS.

“I return to my doctor in a few weeks and plan to tell her that the GF diet is working for me despite the blood tests being negative, because I understand that the instance of false negatives is high. I am so surprised that doctors have missed this possibility with my family for so many years. All the damage that could have been prevented if we had only known!”

Even people who test negative for celiac disease may react badly to gluten, as two recent studies confirm (BMC Medicine, March 9, 2011; International Archives of Allergy and Immunology, online Feb. 22, 2011). These individuals also benefit from a gluten-free diet.

Foods containing gluten are very widespread in the American diet. Choosing a gluten-free approach requires vigilance, but for those with serious sensitivities, it is worth the effort.

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  1. Jewell
    Reply

    Most of the gluten-free breads are made with tapioca. You may be sensitive to that. I can’t tolerate Quinoa either. I soak it and wash it in several waters and it still makes me sick. I have given up ALL grains, including corn and rice, because the starches are hard to digest. I also gave up potatoes and sweet potatoes because of the starches. My doctor told me to get aloe mucilaginous polysaccharaide supplement–very expensive. It poisoned me.
    Don’t eat anything with polysaccharides–like aloe and okra. Nothing with added inulin. Inulin is most often made from chicory and is added to EVERTHING. Go very easy on onions because they contain some inulin. It’s the complex carbohydrates and complex sugars that are hard to digest and leave you wide open to Candida. Google the GAPS diet and the Specific Carbohydrate Diet. I keep a crockpot with bone broth cooking 24/7. When I have a setback I add pureed carrot or beet or squash to the broth to make a nourishing, soothing soup.
    During a set back, stay away from fibrous foods–they irritate your insides. After you’ve healed, you can add them back in. Cabbage, collards, and kale are scary to me right now. I don’t know if I’ll ever be able to eat them again. I take sauerkraut JUICE but not the cabbage part. Nourishing Traditions by Sally Fallon has recipe for creating sauerkraut juice tonic which is more juice than solid. Wheat Belly by William Davis goes into detail about GMO wheat and starches in general. Good Luck.

  2. Adrienne P.
    Reply

    @Cate: This is extremely interesting. I’ve already noticed that potatoes, tomatoes and corn are horrible for my joints; lentils and black beans are terrible for my digestion. This may be an angle for me to pursue, as I have intestinal damage but my biopsy for celiac was supposedly negative. Thank you.

  3. Cate
    Reply

    If getting rid of gluten and dairy don’t relieve your symptoms, you might want to research lectins (high in grains, legumes, nightshade vegetables). Reactions to lectins aren’t nearly as well-known or publicized, but they can cause a multitude of symptoms in some people. It would be great if People’s Pharmacy would provide more information on lectins.

  4. Karen
    Reply

    Adrienne, there’s debate in the gluten-free community about whether the “gluten free” grains are really any better for you. IMO, the gluten-free breads I tested were essentially cake, and too sweet, and not worth the money. Sometimes, abandoning the (dietary) field is simply easier than trying to find substitutes for something my body doesn’t want any more.
    I didn’t read any books; I simply gave up anything that has wheat in it that I can recognize. I still allow myself, on occasion, to pretend that onion rings don’t have wheat in the batter, and I am always disabused quickly.
    I don’t believe there’s any “treatment” for gluten sensitivity besides giving it up completely. However, I am not a MD, so follow your own inclinations in building a health / treatment regimen that works for you.
    You might try an Atkins diet, if you’re looking for something to follow. IT could help you figure out which of the carbs don’t work well in your body.

  5. cpmt
    Reply

    it is strange that quinoa gives you pain… since it doesn’t have gluten. how did you cook it? Do YOU KNOW YOU SHOULD WASH WELL THE QUINOA BEFORE COOKING IT??? IT has some kind of toxic component on its skin. You should always wash ALL grains just in case.

  6. Adrienne
    Reply

    I just tested positive for two of the gliadin antibodies, but the doctor cannot tell me what that means. After nearly two years of pain, joint problems anemia, osteopenia, fatigue and insomnia and no answers, I am looking at gluten. Do gastroenterologists treat celiac? Does anyone know of a good book to start with?
    BTW the gluten-free breads have given me the worst stomachache of my life…why is that? Does anyone have a sensitivity to potatoes as well? Quinoa also hurts.
    Sorry…I have too many questions. Any thoughts on good sources will be helpful. Thanks

  7. cpmt
    Reply

    I was told that eating local honey from where you live will help with allergies.

  8. cpmt
    Reply

    Can you explain how to detox? is just stopping eating any grains?

  9. ML
    Reply

    I went gluten free 2 months ago not due to celiac though. All of my constant aches & pain went away in days. The other day I forgot I should not have oatmeal & ate a big bowl & the next day I was a tired pain filled mess. Now I have to detox all over again! I also do not eat corn or corn products or dairy.

  10. Leslie B
    Reply

    Georgia, I would try an Elimination Diet. The Elimination Diet I found to be best (find and allergist/immunologist) because “Western” tests for allergies only go so far, they’re limited. As an example through Trial and Error and the Internet, I have determined my other allergies that doctors just do not look into or believe to be a problem.
    I’m alive to tell you, Preservatives in foods, products etc are a bigger problem then anyone thinks about, coupled with Gluten, corn and soy especially GMO’s versions and who knows whether what we’re eating or drinking of these 2 products are or aren’t GMO (genetically modified).
    Obviously, if you smoke quit (I smoked for forty years) I found that quitting helped tremendously for ALL allergies and far less mucous in my head/chest. I could potentially go on but after 25+ years of problems—Elimination diet works wonders!
    Best of luck. Remember…You are what you eat.

  11. Rx
    Reply

    Sorry this is so long – but I think gluten is a major, serious health problem right now for many people. Not adequately understood by most doctors, and not adequately diagnosed.
    I learned about celiac by reading an article in the WSJ about a man who had chronic pain and was bounced around for 30 years with various horrible diagnoses. He had celiac disease. I have struggled with many health issues over the years, including pain, and at the time I was very sick and no one knew what was wrong. In desperation, I went gluten free. After a year, my pain and depression were much improved, and my awful blood work results had normalized. I used to get severe respiratory infections several times a year – no more. My immune system is better. No more migraines or rashes either.
    I am VERY sensitive to gluten now, and a tiny amount makes me feel very ill. My symptoms were never much gastrointestinal – nothing that was problematic. Rather, I suffered from depression, irritability, insomnia, pain, mouth ulcers, migraines, rashes, asthma, allergies, frequent infections, etc. Thank god, I tried this diet. I was very allergic as a child, and I’m sure I’ve had this my whole life. I have very brittle teeth and bones. I’ve had lots of fibroadenomas removed – and it’s scary to think of the future sometimes. I had “pre-diabetes” when I went on the diet, and now my sugar is normal. If ONLY someone had diagnosed me as a child! Everything would have been prevented with a gluten free diet. I think this disease is what killed my father at an early age.
    There is a wonderful book called Dangerous Grains with an enormous list of symptoms related to gluten intolerance, ranging from premature grey hair, infertility, skin rashes to serious autoimmune problems and diabetes. Most of the medical establishment is STILL very ignorant about this disease. There are several blood tests that should be done, not just one or two. They often come back false negative. The intestinal biopsy also is a crap shoot (to coin a phrase!), as the intestine is healthy is some areas, and diseased in others. If the biopsies are taken from healthy areas, you get another false negative. I think the response to the diet is the best indicator.
    I got in to see one of the premier researchers in celiac, and based on my diet response he diagnosed me. He told me the disease is a continuum of gluten intolerance, ranging from mild to severe – the severe form is celiac disease. He is the doctor who proved 1 in 133 people have celiac disease. I recently read as many as 1 in 7 may have gluten intolerance in a milder form! That’s a LOT of people. Gluten is in everything, even in bagged vegetables! I think it is what is making us all fat and sick. You can look forward to wonderful diseases like cancers, diabetes, and osteoporosis if you keep eating it. It’s being fed to farm animals and they are fat and sick and full of antibiotics now.
    Oats are controversial as to whether they are allowed on the diet. I cannot tolerate even the steel-cut oats. So called gluten free rice cakes from a large oat company made me sick. (When I called the company to complain, I got an argument that “the govt. has not defined the word gluten yet,” so apparently anybody can claim to be gluten free depending on their own definition.
    Spelt and quinoa made me sick too. I only eat rice, corn, potato and tapioca and flours from them. Plus a normal healthy diet otherwise. When I do that, I feel good, and my digestion is perfect.
    The diet is tricky, because gluten is hidden in many things, root beer, soy sauce, condiments, MSG – your food has to be simple and fresh. In addition you should check with your pharmacist to make sure your drugs are gluten free – fillers in meds are often made of gluten. And, I recently read you might consider keeping it off your skin also. Gluten is found in many creams and lotions, and, for example, wheat germ oil in eye drops. if you’re having strange symptoms, it’s well worth checking out the gluten problem.

  12. Dorothy L.
    Reply

    One of my brothers and his wife had “honeygar” every night for years and years, as a bed time drink. I spent lots of time with them, I don’t remember them coughing. He loved most foods such as sour dough pancakes, home baked bread, ice cream, oatmeal etc. and vegetables. I don’t remember hearing them cough or talk about antacids.
    He had a big garden and bee hives. They were both good cooks, not fancy, just simple good home made and home grown. He had been in active duty in WW2. He was quite healthy all of his life, died last year at the age of 94, we think he had some TIAs in the last few months of his life.. I have quite a lot of mucous, I am going to give the honeygar a good try, The pollen has been terrible here.
    My c-pap helps too and I do have sleep apnea. I like to read others feed back.

  13. ZR
    Reply

    spelt is a kind of wheat

  14. ijt
    Reply

    Georgia, I frequently have a lot of mucus in my throat. I have found two things that help. I warm a small quantity of apple cider vinegar and mix it with an equal amount of honey. (I often use raw honey.) Then I add 1 or 2 tablespoons of this honey-vinegar mixture with 1/2 cup to a cup of warm water. Drinking this clears my mucus. Also, the local health food store has Thayers slippery elm lozenges. Their natural-cherry flavor lozenges also clear my throat but not as fast as the honey-vinegar mixture.

  15. Karen T.
    Reply

    I’ve never bothered with the test; I don’t have acid reflux when I don’t eat gluten and I do when I do, and that’s all I need.
    Re too much mucus? reduce milk products.

  16. Gin
    Reply

    Sorry, but spelt is a wheat. There is a wonderful magazine called, “Living Without”. It is very useful for folks who are just beginning a gluten or dairy free diet. Rudi’s & Udi’s make a good bread, also Glutino makes a bread out of corn.
    Rudi’s is my favorite, it tastes it’s best toasted. All of the above mentioned can be found on the web. Also check out gluten.com for lots of information. Oats are only gluten free if they are processed in a plant that states on the label it’s processed in a gluten free environment. Not everyone can tolerate oats. Bob’s Red Mill is a safe company and they many also be found on the web.
    Jim is correct with his recommendations, I tried all of the above. Also General Mills makes gluten free cereal, Rice and Corn Chex. There are so many wonderful products out there now until there is no need to be deprived. A wonderful book called, “Breaking the Vicious Cycle (Intestinal Health Through Diet)” by Elaine Gottschall, B.A., M.Sc. was a saving grace for me as well as many others. If you are serious about going gluten free I’d buy this book first. Also don’t stop eating gluten until you are tested as it will mess up the results if you do. Entero Labs in Dallas does fecal testing for gluten. They are on the web also.
    Jim, the problem with the doctors if they test for gluten most will only recognize a positive test, they don’t consider a gluten sensitivity and it’s just as real as being diagnosed with celiac. Your history and mine are very similar.

  17. FKV
    Reply

    Would you please publish the recipe for non-gluten cookies? I get post nasal drip and snotty nose when I eat most foods. I’d like to try them. Thank you.
    PEOPLE’S PHARMACY RESPONSE: THIS IS WHAT OUR READER USES:
    Mix 6 tablespoons sweet rice flour, 1/4 teaspoon salt, 1 teaspoon almond extract, 4 egg whites, one 14 oz. package of shredded coconut, and 1/3 cup chocolate chips. Drop onto the cookie sheet and bake at 325 degrees until the tops turn light brown, about 15 or 20 minutes.

  18. JimP
    Reply

    King Arthur Flour has come out with some great gluten-free mixes for pancakes, muffins, etc. My super market also carries Gluten-Free Bisquick + 4 different Gluten-Free Betty Crocker mixes in the “regular” cake mix section. All of the above are very good. You can serve them to your family or guests and not even tell them they are gluten-free. There are also smaller gourmet brands that make excellent gluten-free mixes and flours (look for Pamela’s). I think all of these manufacturers sell directly from their web sites. Health food stores also carry many gluten-free products.

    I was losing a pound a week from constant diarrhea, plus flatulence. I tested negative for celiac in a bowel biopsy, but all my problems went away when I started a gluten-free diet at about age 60. (Looking back, I can see that I had a 30+ year gradual progression of symptoms.) My gastroenterologist tells me he has five other patients who tested negative for celiac in a bowel biopsy but still cannot tolerate gluten!

  19. Laverne
    Reply

    The three grains usually mentioned as containing gluten are wheat, rye and barley. So there are many others that are gluten-free, such as oats (which can be ground into flour) and spelt, which is very nutritious.

  20. Brent B.
    Reply

    It is not surprising that this condition is becoming more common as processed wheat flour is so prevalent and hard to avoid. It would also do everyone good to switch to a “supergrain” like quinoa — which has eight or nine of the essential amino acids.
    There are also a lot of great mucus-reducing herbs or botanicals. Mullein is a good one (best taken at night) and even saw palmetto seems to loosen lung secretion. I also found out about one from Advanced Natural Medicine — English ivy. It’s evidently been used for 50 years in Europe as an expectorant and lung-strengthener, and you can get it from Enzymatic Therapy in Green Bay, Wisconsin.
    I’ve also heard that celiac disease is similar in genetic structure to diabetes. In both conditions there’s a sensitivity (to gliadin or insulin). The moral of the story is that we should do what we can to avoid processed foods — especially white sugar and white flour, in all its various disguises. And if we simply stopped subsidizing this nutritional vaporware, our health problems would also start to evaporate!

  21. PP
    Reply

    Rice and corn based cereals are gluten free. So you can have grits, or cook rice a second time with water, to make gluten-free cereals.

  22. cpmt
    Reply

    Is there any cereal (flour) that doesn’t have gluten (and can be eaten with out a problem)? I know wheat has gluten and which other cereals do have gluten? thank you.
    PEOPLE’S PHARMACY RESPONSE: WHEAT, BARLEY AND RYE ALL HAVE GLUTEN. THERE IS NO GLUTEN IN CORN, OATS OR RICE.

  23. Gin
    Reply

    I was diagnosed with gluten problems in the 1960s. At that time they called it wheat allergy. It was diagnosed with the standard scratch test. I followed a gluten free diet for several years then began to eat it again. I tolerated it for a long time but with all the accompanying GI symptoms.
    I am now 73 years old and have followed a strict gluten free diet for about 4 years. During my later years I began to realize that I was also very sensitive to milk. Entero Labs (Dr Fine) uses a fecal testing method. I had tests through his lab and learned I have several gene related issues. The main ones are gluten and milk casein. These are auto immune and others in the family were then diagnosed with the same issues.

  24. Alice
    Reply

    I always thought celiac disease was only found in very young children and was rare.Then from one of your earlier programs a couple years or more ago I heard about the wide-spread finding of celiac disease in adults. I had had various symptoms for several yers, including gas and bloating and occasional diet-related headaches (like a hangover) but nothing was specific or clearly linked to any one food.
    So I tried a gluten-free diet. After about 4 weeks I noticed a marked improvement. That was over 2 yrs. ago and I have stuck with it because I just feel so much better on it.
    It is hard for various reasons we have to eat out often at situations where I can’t control the food. But I do the best I can and remain totally gluten free when I am at home and its worth it. I feel great! I think I may not have celiac disease– it doesn’t bother me to go off the diet at times — but in general I am better on it!
    Thanks People’s Pharmacy for covering this subject!

  25. BEM
    Reply

    My blood test was negative but my biopsy positive. My doctor said it was the third such case he’d seen in a short time.

  26. Georgia
    Reply

    Pollens/allergens in TX seem the culprit in my case, but, no medication or combination of meds have alleviated extreme mucus, bloating, and general discomfort. Eating gluten-free has reduced some symptoms; but, I still have too much mucus. Is there a natural product (no more med, please) that reduces mucus? Please, help.

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