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.

Doctor holding hands out photo

Ingram Publishing/Thinkstock

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.

For more information on Celiac Disease & Gluten Sensitivity, click here to order the Celiac Disease & Gluten Sensitivity Special Report.

Comments (8)

I have been gluten intolerant for 40+ years, but almost 4 yrs ago found out I had allergies galore - such as yeast, mushrooms, walnuts, peanuts, any form of egg, all milk products, just to name a few. Grocery shopping is a challenge, but I learn more every day and thankfully General Mills and Betty Crocker are stepping up and helping us. I am not celiac, just have all the symptoms like so many of you. The Gluten Free and More magazine is a wonderful publication. Keep up the good work

Posted by: 40%2B years gluten intolerant | February 18, 2015 9:13 AM    Report this comment

I have worked with some people that had gluten sensitivity. I was disturbed at the lack of information given by primary MD and dietitian. No explanation of why it was important to stick to the GF diet, etc. As an asymptomatic celiac all of those years ago, I was fortunate to be diagnosed - another GI issue was masked. Know that there are those of us who try to get the word out to others that this is not in his or her head and the symptoms are very real.

Posted by: RN - 23 years a Celiac | February 17, 2015 3:42 PM    Report this comment

Cyndiseven.....
Google Dermatitis Herpetiformis in regards to your husband's rash.

Posted by: PindaKaas | February 17, 2015 9:35 AM    Report this comment

Dear Cyndiseven - I have experienced the same issues as your husband, but have been lucky enough to be surrounded by knowledgeable practitioners who have given me guidance! After being diagnosed with Celiac, and not getting better on a gluten free diet, I went on an elimination diet and just kept eliminating food until I became non-reactive. It was discovered that I have NRCD, aka non-responsive celiac disease, which means that my system is so sensitive that I have cross reactions. And there are tons of food on that list. My doctor directed me to the Specific Carbohydrate Diet, which eliminates all grains, sugars and starchy veggies (like potatoes and sweet potatoes). After 3 years of hard work, I feel wonderful! My advise to you - DON'T substitute gluten free convenience foods for gluten-filled convenience foods - junk is junk, with or without gluten! In fact, many gluten-free foods are even worse for you as they are filled with starches and other nutrition-less ingredients, they are higher in calories and are triple the price! Instead, focus on real food - humanely raised meats, organic fruits and veggies, etc. It is a lifestyle change, for sure...some days I would kill for a donut, but feeling better and healing your gut is well worth the work! Hang in there...

Posted by: Lulusama | February 17, 2015 9:19 AM    Report this comment

My husband has been diagnosed a celiac for three years now. He still experiences symptoms, but is strictly gluten free. Never deviates from GF diet. My question is that he has developed a horrible rash on his arms. It doesn't itch or bother him, but it looks terrible. Has anyone else developed a rash? We spend the winter in Arizona and when we get home he will go to a dermatologist. As his wife I don't like having to cook gluten free, but after 50 years of marriage I love him so much and he suffers so much with celiac our lives are greatly improved with him feeling better by being gluten free. Thank you for all you do for the GF community.

Posted by: Cyndiseven | February 17, 2015 8:04 AM    Report this comment

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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