The People's Perspective on Medicine

Are You Suffering from Celiac Disease?

You may be suffering from celiac disease and not even know it. Physicians have been slow to diagnose this surprisingly common condition. Learn the symptoms.
Bread pasta wheat gluten carb

Not so long ago, most doctors were taught that celiac disease is extremely rare. In the last few decades, it has become clear that celiac disease, an inability to digest gluten, is not nearly as unusual as they had thought. Vulnerability to this auto-immune condition is inherited, so when one person in a family is diagnosed, it makes sense to alert all the relatives so that they too can be tested.

Do You Have Celiac Disease?

Q. My brother has celiac disease and called to warn me last year. He asked if I was having lots of hard-to-treat health issues? I replied, yes!

I have headaches that won’t go away plus diarrhea, eye infections, rosacea and stomach problems. I have spent lots of time and dollars in the doctors’ offices and on medications trying to find the cause of all my symptoms. Not one suggested it could be gluten!

A. American physicians were taught that celiac disease (celiac sprue for old timers) was a very rare condition affecting only 1 person out of 5,000. Doctors call this a “zebra.” In medical school they are told that if they hear hoof beats, they should “think horses, not zebras.” In other words, always consider the most common cause for a symptom rather than something “rare.”

Does Celiac Disease Run in the Family?

It turns out that celiac disease is actually more like a horse than a zebra. A study (Riddle et. al. Am J Gastroenterol. 2012, Aug in 2012 revealed that celiac disease may affect as many as 1 in 100 healthy Caucasians. Sensitivity to gluten runs in families. If a parent, sibling or child has diagnosed celiac disease, the chances that others in the family will also have it becomes 1 in 22.

Many of your symptoms could well be caused by celiac disease, especially the headaches, skin problems and digestive distress. Although some doctors think celiac is primarily a gastrointestinal condition, many other organ systems can be affected. Because the small intestines cannot adequately absorb nutrients, all sorts of damage can occur. A person suffering from celiac disease can become starved for vitamins and minerals. Even though they may eat a perfectly balanced diet, patients are often low in iron, calcium, B vitamins and other essential nutrients.

Celiac Disease and Joint Pain:

Here is one story that links celiac to joint pain:

“I suffered from abdominal pain, gas, bloating, constipation and diarrhea as well as joint pain for over ten years. Three different doctors told me that I suffered from irritable bowel syndrome, with symptoms mild enough to be controlled with over the counter drugs, meditation and other stress reduction techniques.

“My last physician told me that she suspected rheumatoid arthritis because of the joint pain. If it continued for a few more months she’d put me on steroids. At age 30!

“I specifically asked if these problems could be food related, and no one thought they were. Finally I was bedridden four days out of seven with severe abdominal pain and woke each morning with knees so stiff and sore that walking was a chore for the first ten minutes of the day. I consulted a naturopathic doctor who discovered I am sensitive to gluten. Within three days of cutting wheat from my diet, I was a new woman, with no joint or abdominal pain!”

Angular Cheilitis and Gluten Intolerance:

Another reader offered this account:

“Several decades ago I had a persistent problem with cracks at the corners of my mouth. My dentist prescribed a very expensive topical ointment that temporarily relieved the condition.

“When the angular cheilitis was brought to my primary doctor’s attention, he said it was caused by a vitamin B deficiency and prescribed prenatal vitamins for me. This resolved the problem. I was still puzzled, however. When I asked my doctor how I could have a vitamin deficiency even though I ate a well-rounded diet and loved fruits and vegetables, he said that some of us do not absorb nutrients as well as others.

“It turns out that he was right but did not go nearly far enough in trying to uncover the root cause. (I also had slight anemia and some other bothersome chronic problems that were related to nutritional deficits.)

“Twenty years later, I was living in France and being treated for a kidney stone. My French doctors, just by chance, found that I had celiac sprue. Changing my diet by eliminating gluten almost immediately cleared up the myriad problems I had been wrestling with for so many years. My American doctors had been treating me for celiac symptoms for about three decades without ever looking for the cause.

“When I returned to the U.S. in 2000, I asked my American doctor to verify the French diagnosis. His response was puzzlement at the name ‘celiac sprue’ as if I had mentioned some rare exotic disease. He also said he did not know how to test for it!

“One of many lessons here: If you have persistent vitamin or mineral deficiencies, check for malabsorption to try to establish why.”

Symptoms of Celiac Disease:

  • Digestive distress: bloating, abdominal pain & cramps, diarrhea
  • Fatty floating stools; tan or light gray in color; gas
  • Anemia
  • Fatigue
  • Arthritis or joint pain
  • Muscle cramps
  • Skin rash (that can be intensely itchy at times)
  • Osteoporosis
  • Neuropathy (tingling or burning feeling in feet or legs)
  • Depression and/or brain fog
  • Irritability
  • Mouth sores
  • Lactose intolerance (reaction to milk sugar)
  • Muscle weakness
  • Infertility
  • Easy bruising

Dr. Peter Green is one of the world’s leading celiac experts. He provided up-the-minute answers to some of the most important questions about celiac disease and gluten intolerance in our one-hour radio show interview. You will find out about:

  • Other symptoms that might suggest celiac disease
  • The best tests to diagnose celiac disease
  • The most common problems with the diagnosis
  • The reason so many doctors are still unaware of this condition and how to diagnose it properly
  • The way to treat celiac
  • Why treatment is so crucial (hint: to avoid the blood cancer lymphoma, and early mortality!)
  • What tests to avoid that have not been validated

Non-Celiac Gluten Intolerance:

We also spoke with Dr. Green more recently about non-celiac gluten intolerance and who might benefit from avoiding gluten. That is Show 1049: Do You Need a Gluten-Free Diet?

There is also information about celiac disease in our Guide to Digestive Disorders.

We hope you can avoid some of the complications of celiac disease or gluten intolerance by becoming better informed about this surprisingly common hidden epidemic!

Share your own story by commenting below.

Revised 10/27/16

Rate this article
4.9- 17 ratings
About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
Tired of the ads on our website?

Now you can browse our website completely ad-free for just $5 / month. Stay up to date on breaking health news and support our work without the distraction of advertisements.

Browse our website ad-free
Join over 150,000 Subscribers at The People's Pharmacy

We're empowering you to make wise decisions about your own health, by providing you with essential health information about both medical and alternative treatment options.

Showing 16 comments
Add your comment

Going gluten free is easy these days. The first thing I did was choose a delicious bread; that took trial and error, some GF breads taste like sawdust. Then, I bought a good almond butter and tasty jelly for sandwiches; I carried one every where. Eating pure is best. When eating out, Grilled chicken, rice, baked potatoes, steamed vegetables, small dinner salad is easy to find. At home, soup is my go-to, quick, healthy, life-saver when starved; add a piece of toast with savory topping, yummy! I’m also dairy free so found a good yogurt for a daily treat. Once you get over the shock and get serious about eating gluten free, the immediate reward of feeling well again is the best motivator. Five years ago I was dying a slow, debilitating death, today I am healthy and energetic (some B-12 shots helped ease the fatigue). Clean your kitchen of all gluten products, go shopping and buy non-gluten everything, read labels religiously, buy fresh organic veggies, buy a treat or two; you’ll soon realize it’s not the end of the world, it’s a new beginning.

My reply is to MC who wrote to PP on May 4th: I have been diagnosed since the 40’s when I was under 3. Eventually I went into remission and could tolerate some gluten, but I was always ill with all kinds of stomach pains. By the late 80’s I was at the end stage, and had to stay home. This happened after seeing some 20 gastroenterologists who thought I had IBS or some other stomach diseases. One doctor suggested I was missing an enzyme. I refused to go to the ER because I felt they new nothing about the disease. I honestly believe that by going I would only become more ill.
Luckily for me, a doctor from Italy had come to my city and the doctor’s nurse called me because as yet he had no patients. He told me what I had was the same celiac disease that was present when I was a toddler. He told me to stay away from gluten, which I have done all these years. I felt that way 24 hours after seeing him. I told every physician I saw prior to the one who diagnosed me that I had celiac as a child. None saw this as a clue.
I too no longer go to doctors unless I absolutely must, and have no faith in their assessment. I do go to a self help group where I live that I started ten years ago. The members know a great deal. The Celiac Sprue Association as well as others have a all the information.

I have tested negative for celiac disease (biopsy of small intestine) but I have long struggled with IBS-D and after having a parasite infection (Giardia)treated twice with flagyl, I continued to have worsening bloating, diarrhea, abdominal pain, IBS, with every test coming back negative. I finally took myself off gluten and the relief was like a miracle.
I am totally gluten free, and if I mistakenly ingest it, (barley in a soup) I am miserable with the same symptoms. I read every label and thank god for the gluten free aisle in our Wegmans supermarket. Trader Joes helps dessert cravings with their gluten free choc. chop cookies!
My gastro-guy says I have “non-celiac sensitivity to wheat”. This is now an official diagnosis, apparently. But I know it is to ALL gluten.
I have also been lactose intolerant for 5-6 years after a bout with cryptosporidium (another parasite). I seem to be a magnet for parasites!
My IBS has not gone away, and I still have GERD for which I take one omeprazole each night. I also have osteoarthritis…knees, joints. I am 76, and otherwise am blessed with good health. I take no other meds.
Suggestions welcome!

I was told I had irritable bowel syndrome. When I told my doctor I was having constant diarrhea, he told me to go on a gluten-free diet. Then he ordered a test; it was positive for celiac disease. My symptoms have decreased, but I still have some diarrhea and constipation. I try to avoid all gluten, especially difficult at restaurants.

I am 71 and had to change my eating habits. Do I need a Dr. to order the Food Safe test? Can I get the test myself? I have changed my diet and feel much better eliminating beef, milk, butter and sugar. I think I might have a problem with bread. I have been getting some symptoms listed and wonder if gluten might be another.

Recently I read and article that one woman was diagnosed with MS and her doctor and the second opinion doc recommended heavy medication. She decided to go to an alternative doctor and he find out she was allergic or sensitive to gluten. After she removed ALL her gluten foods she was used to eat , she was ok.
My thinking is that too many doctors don’t have a clue about who many people’s illnesses are due to bad diets and allergic reactions to some foods. -autoimmune- ECZEMA, PSORIASIS (another story) acid reflex, IBS and ….etc etc..

I fight hives mainly in the summer when I get out in the sun on my face and hands. It’s like I’m allergic to the sun, or that one of the medicines I’m on is causing these hives/redness/itchy splotches on face and hands mainly…the rest is normally covered outside. Dr.’s are unsure what is causing this condition, so therefore I’ve had to become a hermit and seldom leave the house. Sunscreen makes my face and hands turn really red when I wash it off, like I’m allergic to it too.
Wondering if this sounds like celiac or a gluten problem?

I suspected I might have gluten or wheat intolerance. I eliminated it from my diet. I now allow myself a small amount of gluten.
I had been noticing that the hearing my right ear was decreasing. since I eliminated gluten my hearing has returned to normal.

Some people are suggesting that the reason gluten is more of a problem now is that the wheat has been hybridized to include more gluten so as to make it bake better!

Four years ago our Dr. gave my hubby the “Food Safe” test. All that is required is to prick ones finger and drop blood on a mail-in card. Gluten was a major problem but he has some other allergies as well. Cashews were his favorite nut…sigh…
Eliminating the allergens has made an incredible difference for him. He got his energy back, sleeps better and doesn’t fall asleep at the dinner table. He also lost his gut and about 20 pounds without even trying.
I would encourage everyone to get this test done. Make sure you are eating everything before doing it though so it is an accurate test. Even if you think you are sensitive to something make sure you are ingesting it so it will show on the test.

My sister-in-law was diagnosed with celiac two years ago and her doctor warned her at that time that when one auto immune disease shows up, not to be surprised if another one appears. Sure enough, here came lupus, and what a mess this combination is!

I have suffered from various health problems for as long as I can remember. Bladder infections, head colds, sinus infections, skin rashes, acne, digestive issues, food sensitivities and finally Multiple Myeloma (Bone Marrow Cancer-a blood cancer). I believe it was all caused because of gluten intolerance. Not just wheat, but gluten. I have been looking for answers for 30 to 35 years. I am 57. No doctor ever diagnosed this problem, I did through my own research. It was too late to avoid cancer, but staying completely off gluten helps tremendously.
I have to eat a fairly restrictive diet and I have a green smoothie every day to help with nutrient absorption. Do not let anyone talk you out of changing your diet. It is not the latest diet fad. It is a serious health risk for many people.

My Family and I took a trip in 1995 and all became extremely ill. When we returned home, my illness reoccurred. Subsequently, I began to have constant stomach issues with bloating, pain and diarrhea which eventually led to anemia. I had joint pain, swelling of my arms, legs, ankles and feet, hives, rashes and what looked like severe acne.
Because of the different symptoms, I was sent to multiple allergists, rheumatologists, infectious disease specialists, dermatologists, gastroenterologist and more than I can recall. The testing was endless, expensive, unpleasant, and in the end, useless.
I decided I had had enough when my primary care doctor suggested that the problem “was in my head”. I went home and tried to figure it out myself. I started eliminating various foods, tried to put “2 and 2 together” with foods and reactions, did hours of my own research and after more than a year I was able to narrow it down to gluten and dairy.
At that time, it seemed to be the infancy of the gluten focus, but certainly one of those doctors should have been able to put 2 and 2 together. I did and I don’t have a medical degree.
I was angry about the treatment, the comments, the dismissals the rolled eyes and smirks I had to endure from doctors and medical people during this time. It was painful and humiliating. I don’t have much respect for most doctors now and I only go to the doctor now if I already know what I have and I only need a prescription.

This information was helpful how can you avoid gluten foods.

My husband, 64, and a type-1 diabetic suffered from chronic,severe constipation for years.There were even trips to the emergency room.Our daughter suggested we try a gluten free diet.It was amazing, the constipation went away.It is easier to follow the same diet myself and my benefit was weight loss.The elimination of wheat made my overheating more controllable as if I had an addiiction to wheat. I don’t know about nutritional science but this was our experience.

Dr.Peter Green saved my sister , diagnosed in the late 80’s…..after seeing many “top” doctors who told her to eat a bland diet of bagels and pasta for her irritable bowel syndrome. Somehow she made it to Columbia Medical Center and met with Dr. Green. She became active in the NY support group and it’s newsletter and was a tremendous supporter of the newly diagnosed individuals who thought that there lives were doomed. Back then you had to mail order away for many gluten free products or travel to distant distributors….Foods by George was an early favorite baker of hers. Risotoria in NYC too….now life is so much easier with stores like Trader Joes and Fairway……

* Be nice, and don't over share. View comment policy^