Most physicians still think of celiac disease (an intolerance to gluten found in wheat, barley and rye) as a rare condition. That is why more than 90% of people with celiac disease go undiagnosed in the U.S. That is what we learned from one of the world’s leading experts, Peter Green, MD, Director of the Celiac Disease Center at Columbia University.
Here are some 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

With so many symptoms associated with gluten intolerance you would think a correct diagnosis would be relatively easy. Au contraire. First of all, many people only suffer from one or two symptoms and they can be relatively mild. Gas, bloating and abdominal pain may be intermittent and could easily be chalked up to something else. IBS (Irritable bowel syndrome) is frequently diagnosed instead of celiac disease. Anemia can be caused by lots of things and many doctors may not think of celiac disease when someone turns up borderline anemic. Since no one really knows what causes arthritis pain and because it is so common, many health professionals are not likely to consider celiac disease as an underlying cause.
The worst insult of all is that far too often a patient who repeatedly complains about fatigue, brain fog, irritability and digestive distress may be categorized as “mental.” In other words, the health professional ends up attributing the problems to psychological problems.
Even when a doctor orders a test for celiac disease it may come back falsely negative. Knowing which blood tests to order and how to carry out a proper biopsy and have it read by a knowledgeable pathologist requires special expertise. And some people who may not have celiac disease might still be intolerant to gluten.
One reader’s comments:
“I suffered for decades with severe stomach pains, gas, bloating and attention-getting digestive noises, and despite seeking treatment, never got relief. Until, that is, I stumbled upon information about celiac disease, a genetic intolerance to gluten found in wheat, rye, barley, and sometimes by cross-contamination, oats. It has changed my life, and that is no understatement.
“Celiac disease was formally thought to be very rare in this country, but a recent Mayo Clinic study put the rate at about one of every 133 Americans, the majority being undiagnosed. There is a lot of needless suffering out there, so anything you can do to increase awareness would be wonderful.”

Barbara G.
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Another contributor:
“I listened to your program on celiac disease/gluten intolerance last week. I would like to let you know my experience in case it is helpful to anyone else. Several years ago, I began a gluten free diet because I had been experiencing very loose bowels for a long time. This symptom cleared up when I eliminated gluten from my diet. I then had a blood test which confirmed a postive gliadin antibody level.
“After several years of following a gluten free diet, I recently saw an alternative health practitioner who told me I should not eat wheat, but that I could eat spelt and kamut. I have been using spelt flour now for several months and have had no adverse effects.
“I recently heard that today\’s wheat is hybridized to contain higher protein levels and is much, much higher in gluten than the wheat our ancestors ate. Perhaps this is related to the present prevalence of gluten intolerance.”
Linda
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Dr. Peter Green provided up-the-minute answers to some of the most important questions about celiac disease and gluten intolerance in last Saturday’s 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

You listen to the radio show for free by streaming the audio from this link. Just click on the arrow. You can also download the MP3 for free or purchase a CD for $9.99 and share it with a loved one or a friend. We also have a special discount on the CD and a copy of Dr. Green’s excellent book, Celiac Disease: A Hidden Epidemic.
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.

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  1. Suzanne
    Reply

    To Adrienne P., who asked, “Any thoughts?”
    I think you should eliminate gluten! None of the tests matter if it makes you feel better. Good luck!

  2. PP
    Reply

    It would be good to hear more about the fact that our genetically modified wheat with higher protein levels may be the culprit for the spike in gluten intolerance.

  3. Mary
    Reply

    Last year my brother was diagnosed with Celiac’s and I began eliminating all the gluten products I had been eating. Since then I am feeling so much better plus unexplained headaches are practically a thing of the past. Because of them, I had 2 very unnecessary tests, a spinal tap and a brain scan. Gluten intolerance was never mentioned by any doctor even though I told them I had lactose intolerance for years. My fibromyalgia has also lessened since being gluten free.

  4. Adrienne P.
    Reply

    Are there people out there who have had diagnosis problems?
    My antibodies were positive; my symptoms were textbook and the endoscopy made the gastroenterologist believe that I have celiac–“the appearance of the small intestine is consistent with celiac.”
    But the lab pathology was negative!
    I am suffering from arthritis and other issues that I believe are diet related.
    Any thoughts?

  5. L Williams
    Reply

    “Attention getting digestive noises” – Good to hear that I didn’t suffer alone. Major life improvement once I discovered what was causing me so many problems!

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