Web Only ArticleMay 8, 2014

Non-Celiac Gluten Sensitivity?


For years, many people reported having celiac-like symptoms—abdominal pain, fatigue, foggy mind, joint pain, tingling of the extremities, even depression— but they repeatedly tested negative for celiac disease and responded positively to the gluten-free diet.

Now specialists recognize that these patients may have non-celiac gluten sensitivity, a condition that is distinct from celiac disease.

How common is non-celiac gluten sensitivity?

Studies have now demonstrated that non-celiac gluten sensitivity is a distinct medical condition that differs from celiac disease. Celiac disease is considered a subset of gluten sensitivity. Anyone with celiac disease, by definition, is gluten sensitive. However, not all gluten sensitive people have celiac disease.

Stefano Guandalini, MD, founder and medical director of The University of Chicago Celiac Disease Center, underlines the fact that there is no data yet on the actual prevalence of this condition but a reasonable guess is that between 1 and 3 percent of the population may be gluten sensitive.

How does it differ from celiac disease?

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Unlike celiac disease, non-celiac gluten sensitivity causes no measurable intestinal damage. Classic symptoms are gastrointestinal, such as diarrhea, bloating or constipation. Some people report symptoms ranging from clumsiness, brain fog and depression to ADHD or autistic-like behaviors.

Non-celiac gluten sensitivity appears to be possibly related to the innate immune system—the body’s first line of defense against invaders—whereas celiac disease involves both the innate and the adaptive immune system— a more sophisticated arm of the immune system that is slower to respond but capable of producing the autoimmune attack.

Patients with non-celiac gluten sensitivity might have various reactions to gluten. In a study of 347 gluten-sensitive patients conducted by the University of Maryland, 68 percent experienced abdominal pain, 40 percent had eczema or a rash and approximately a third reported headache, diarrhea, fatigue or “foggy mind.” Depression, anemia, numbness in the legs, arms or fingers and joint pain were also frequently reported.

How is it diagnosed?

Currently, non-celiac gluten sensitivity is a diagnosis of exclusion; it’s diagnosed only after other conditions are ruled out. Non-celiac gluten sensitivity is not an allergic condition, not an autoimmune reaction to gluten, does not cause any significant damage to the small intestine and you do not need to have HLA genes to develop it (as you do with celiac disease).

There are no genes that are currently known to be associated with non-celiac gluten sensitivity and no diagnostic markers, such as anti-gliadin antibodies, stool tests, saliva tests or biopsy, for conclusively diagnosing the condition. Non-celiac gluten sensitivity is typically determined by a positive response to the gluten-free diet. The defining element of non-celiac gluten sensitivity is feeling better when you don’t eat gluten.

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Comments (3)

Three weeks ago I was sure I was going to die! I woke up at three in the morning with orange oil running down my legs (gross huh) and gut pain. The diarrhea and gas was awful. I went on line with my symptoms and there it was CELIAC . As soon as I was cleaned up off to the grocery store I went. Gluten free bread, pasta, rice and anything else I could think of to get me gluten free until I got to see my Doctor two weeks later. He said maybe you have Celiac but you have been gluten free for more than two weeks and you have to have gluten in your system to test. By this time most of the really bad symptoms have lessened to the point where I feel so much better I don't need or care for a definite diagnosis. I have no health insurance and do not intend to spend $ 100s of dollars on tests that tell me not to eat gluten. With sites like this one, with recipes and helpful information I feel I can get through the days, weeks and years ahead. Thank you all for the help and hope!

Posted by: hiramsmom | November 11, 2014 10:01 AM    Report this comment

I have finally figured out my culprit, gluten. After 16 years of doctors telling me its in my head and its stress, I finally spoke up and took control. Negative for celiac but symptoms are flowing with a vengence. I started to get depressed of the "your normal" when I knew broken down in tears on my bathroom floor was NOT normal. My daughter was diagnosed at 4 with the gluten sensitivity. I never ate her food, I wish I did. For the first time in years I can go a whole day pain free. Thank you for all the articles you put out. It has made me feel normal and that im NOT crazy. People need to know that just because you have CELIAC does not mean your symptoms are worse. You can have dibilitating painful symptoms and be negative for celiac. Listen to your body. It knows best! Forever grateful for living without!

Posted by: after16yearsimfree | September 6, 2014 10:35 AM    Report this comment

Very interesting reading.... I have put up with this condition for sometime now and still learn more each day......... My wife has been so wonderful at preparing Gluten-Free meals and breads for me.... After a time shopping becomes easier because you know what to look for.... General Mills and Betty Crocker have really taken notice of our needs... More items are showing up in the grocery stores all the time.... I have already picked up two new recipes from this site.... Hope to read other postings in the future....

Posted by: Ricelover | July 14, 2014 9:50 PM    Report this comment

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