The People's Perspective on Medicine

Show 1100: What Is the Story on Celiac Disease? (Archive)

Get the full story on celiac disease and learn when you should and when you should NOT follow a gluten free diet for your health.
Dr. Joe Murray, Mayo Clinic gastroenterologist
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What Is the Story on Celiac Disease? (Archive)

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At one time, doctors believed that celiac disease was extremely rare, that the few children who had it would outgrow it and that the symptoms were primarily digestive. We now know that none of these axioms are true and the story on celiac disease is different. What is it now, and why does it matter?

What Is the Story on Celiac Disease?

Celiac disease is an autoimmune condition in which the body’s reaction to the protein in gluten damages the digestive tract. This disorder is far more common than doctors once thought. According to current statistics, as many as 1 person in 120 or 140 has celiac disease. Since susceptibility is partly determined by genetics, people with a family member who has celiac disease are consequently at much higher risk of the disorder.

Celiac disease can cause gastrointestinal symptoms, but it also damages numerous other body systems. An inability to absorb vitamins and minerals can result in nutritional deficiencies that may affect the blood, bones, brain or skin. Anyone with severe anemia or unexpected osteoporosis should be tested for this condition.

How Do You Know If You Have Celiac Disease?

This is not a disorder that lends itself to self-diagnosis. Blood tests can give a strong indication, though they are not entirely foolproof. A biopsy of the small intestine is the gold standard for diagnosis. It is very important that anyone who suspects they might have celiac disease NOT start immediately on a gluten-free diet, as that could interfere with the accuracy of the diagnostic tests. You need to get the true story on celiac disease without distortion.

How Is Celiac Disease Treated?

The only treatment currently is complete gluten avoidance. Unfortunately, this is much easier said than done. Wheat, barley and rye all contain gluten. These grains (especially wheat) are found in a surprisingly large number of processed foods, sometimes as texturized vegetable protein. At the same time, people following a gluten-free diet may need to make a special effort to get all the nutrients they need in addition to shunning gluten.

Should Others Follow a Gluten Free Diet?

As it happens, the question of non-celiac gluten sensitivity is quite controversial. After ruling out a celiac disease diagnosis, some people still feel better if they skip wheat and other gluten-containing foods. By following a diet focused on whole foods, especially vegetables and meats, which are naturally gluten free, such individuals can get a balance of nutrients.

This Week’s Guest:

Joseph A. Murray, MD, is a gastroenterologist in the Division of Gastroenterology and Hepatology at the Mayo Clinic in Rochester, MN. He is also Professor of Medicine there, and runs the celiac disease research program. It focuses on epidemiology and complications of celiac disease and mouse models of gluten sensitivity.

Dr. Murray is the section editor for Gastroenterology for the Mayo Clinic Proceedings. He serves as a consultant to several companies and has broad experience with clinical trials.

His book is: Mayo Clinic Going Gluten Free: Essential Guide to Managing Celiac Disease and Other Gluten-Related Conditions.

Listen to the Podcast:

The podcast of this program will be available the Monday after the broadcast date. The show can be streamed online from this site and podcasts can be downloaded for free. CDs may be purchased at any time after broadcast for $9.99.

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About the Author
Terry Graedon, PhD, is a medical anthropologist and co-host of The People’s Pharmacy radio show, co-author of The People’s Pharmacy syndicated newspaper columns and numerous books, and co-founder of The People’s Pharmacy website. Terry taught in the Duke University School of Nursing and was an adjunct assistant professor in the Department of Anthropology. She is a Fellow of the Society of Applied Anthropology. Terry is one of the country's leading authorities on the science behind folk remedies. .
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Why is the wheat different in Europe?
One comment made was that in Europe the people did not have issues with gluten.

After nine years dealing with brain fog, psoriasis on my hands, doctors treating me for depression, and antidepressants that caused me to gain 50 pounds, my answer came one morning standing in my kitchen. It wasn’t an audible voice, but just a silent voice in my mind. “Your problem is gluten.” I had never heard of gluten, so I went to my computer and googled it. There I saw all of my symptoms including the diarrhea I had not even connected to my problem. That was 10 years ago. I immediately went gluten-free and never looked back. I have since eliminated dairy and legumes, but that is probably due to my age. Call it divine intervention if you will, but I thank God every day. And I told my primary care doc that God was doing his business!

I had the highest DNA testing for gluten intolerance my Dr. had ever tested. One of the major hospitals in this country said that did not mean a thing because I had the small intestine biopsy that said no celiac disease. They said I can eat wheat, so I eat a little and feel bad all the time, so I am going back to no wheat. I take tons of vitamins. Who do you believe?

I can tell you this: All my life, from the time I was twelve, I had swollen ankles and feet. Later, I had hypothyroid diagnosed by symptoms only. I just knew I was hypo. Then, a couple of years later, I was given thyroid testing, and my TSH was 7.5 indicating what I already knew, hypothyroidism. I went to a holistic doctor, and she told me to go gluten-free. Now that I am older, when one would expect to get swollen ankles and feet, mine are skinny. If I cheat, I feel awful. It doesn’t hurt to just try it, and see what happens even if you don’t have full-blown Celiac.

A small intestine biopsy is no longer the “gold standard” for Celiac diagnosis. Some folks have gastrointestinal effects while others have neurological effects (ataxia, MS-type symptoms). The ONLY gold standard is genetic testing which is inexpensive and performed using a cheek swab. Either you have the Celiac genes (HLA DB2 and/or HLA-DB8) or you don’t. is one of many labs that performs the testing.

A hospitalist, during one of my too-frequent hospital stays, suggested that I go on a gluten free diet for six weeks and see what happened. That worked wonderfully well. Then I had my gall bladder removed and developed post-cholestectomy syndrome with nausea, vomiting and dreadful, dehydrating diarrhea.

Doctors just shook their heads. I got it under control with a cup of ginger tea a day and two macaroons daily. No doctor has ever tried to find out what is really going on with me. My usual blood tests are good. The closest I have ever come to a diagnosis, after seeing numerous doctors, specialists, etc, , is “probably MS” and one of the genetic markers for celiac disease, which, coupled with symptoms, does indicate a diagnosis. Today I am trying to deal with a phantom odor with accompanying nausea, a rather too-frequent occurrence. I have given up on doctors. They don’t seem interested.

My gluten intolerance is similar to Sherry’s. For years I had symptoms. No doctor ever suggested celiac or gluten. The migraines were bad and through a MRI the neurologist saw white spots which confirmed the migraines or possibly MS. Thankfully no MS. I left his office 12 years ago with a diagnosis of fibromyalgia that I don’t doubt however I did not want to be labeled. As I left his office he said “unless it’s something else?” I found a holistic MD, discussed the fibro diagnosis, the migraines, canker sores, elevated cholesterol and feeling wiped out. He put me on a gluten free diet but never called it that. After feeling better as many do I began adding wheat pasta, occasional bread etc. back in landing me in the ER. That doctor advised go back on gluten, get tested to confirm..really! I am on gluten free diet..much like Sherry if I get unknowing gluten it sparks my issues but I will never go back. I do supplement with a good multi, fish oil, vit C, mushroom complex & flaxseed. I’m sure my son and his young adult daughter have it but have not caved to be tested. Hopefully soon.
Good luck to all on their own journey.

FYI 11/13/2017 Trying to listen to celiac podcast for free. It’s not playing though.
Charlotte is so darn dangerous.
I’ve listened on a WIlmington station before.
Thanks for all that you do.
I’d like to see you do a HealthWatchUSA webcast with Dr. Kavinagh and have that on their site. Seems like such a great overlap of info, win-win for you both. I spoke at their 2017 conference representing a family with preventable adverse event. They had fantastic speakers which reminded me so much of physicians from your programs.

I listened to this show with interest on my way to a Pancreatic Cancer PurpleStride event. Many symptoms are similar to pancreatic cancer’s. At the event, I met a woman who was gluten intolerant and had her entire pancreas removed (Whipple & distal splenectomy) due to IPMN’s throughout the organ. She is now fully dependent on insulin and pancreatic enzymes (Creon). Since the surgery, she can now eat gluten without problem. Perhaps the replacement enzymes are better able to break down gluten?

My husband at young age of 23 had really bad joint pain and would refuse to walk or run with me. We had our 2nd child and he gain a lot weight. He is consider obese. Well any how, I was reading research on joint pain in early age. I read about avoiding gluten possible to help with joint pain.

This was 5 years ago and now my husband is gluten free for years to relive joint pain, and GI upset are almost all gone. His joints are and hand look thinner and he is no longer bloated everyday.

He feels bad within 4 hours of being contaminated we as a family go out. I am an Dietitian and beg him to go his PCP to get tested early on. His PCP said it was no point because he felt good and the diet is the only treatment.

My wife and daughter have recently discovered their thyroid condition is a result of an autoimmune condition triggered by gluten. The condition is Hoshimoto’s disease. My wife and daughter have changed their diets to “gluten-free.” Does Dr. Murray have any thoughts on this condition?

I probably had this most of my life and went to doctors with various symptoms. The doctors never diagnosed the problem and one even told me I just needed a shrink. After reading about it on the internet, I realized I had almost all the symptoms listed and went gluten free. Don’t ask me to go back on gluten so a doctor can diagnose it with the gold standard test, they had a good 45 years missing the boat and I seem to be doing very well on my own. I take a lot of vitamins, cook from scratch since many processed foods have gluten and/or milk (also can’t digest) in them. If I unknowingly eat something with gluten in it, I get a canker sore or my fingers suddenly get purple bruises on them within 24 hrs. My son also has issues. Neither of us have problems in Europe where the wheat is different.

I hope that your guest will address the use of Faecal Calprotectin testing for inflammatory markers in Primary Care prior to even doing blood tests (TTG). Studies have already shown that coeliac children with high FCAL results indicating IBD, do much better on subsequent FCAL if they follow a gluten free diet. We see far too many physicians relying simply on blood tests for coeliac which are not always reliably accurate and carry a high healthcare cost.

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