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Non Celiac Gluten Sensitivity

Posted by jebby, 11 February 2013 · 5,076 views

Yes, this is a real diagnosis, and it effects between 6 to 8% of our population, or approximately 18 million people. Many doctors and patients are unaware that it exists. Most of the papers on this topic have only been published in the last 2-3 years. The British Medical Journal published a case study and review of gluten sensitivity in their November 30, 2012 edition. It is the first case study I have come across in a major medical journal in which a patient self-diagnoses based on information which he found on the internet. The review article gives a good overview of our current understanding of this disorder.

Gluten sensitivity is a catchall term for a bodily reaction to eating gluten. It is not a food allergy, and the autoimmune process differs from celiac disease in that there is not destruction of the villi of the small intestine. People with gluten sensitivity may experience any of the following symptoms after eating gluten:

1. Gastrointestinal symptoms like diarrhea, abdominal pain, constipation, and/or “irritable bowel syndrome.”

2. Fatigue, depression, or difficulty concentrating. Feeling like one has a “foggy brain.”

3. Joint pains, stiffness, and/or leg numbness and tingling.

Anemia and osteoporosis have also been associated with gluten sensitivity. Some recent work has also shown neurologic problems, such as ataxia and peripheral neuropathy, in gluten-sensitive individuals.

Many of these symptoms overlap with celiac disease, but patients with gluten sensitivity do not meet the diagnostic criteria for celiac disease. Some may not have either of the two major celiac genes (HLA-DQ2 or DQ8), some may not have abnormal celiac antibodies, and most have normal, or almost normal, small bowel biopsies.

There are no tests for gluten sensitivity. Once celiac disease has been ruled out, if your symptoms go away when you stop eating gluten, and they return when you start eating gluten again, then you know that you are “sensitive” to it. You can diagnosis yourself.

We do not yet have information on the long-term effects of continuing to eat gluten if you have a gluten sensitivity. In this recent article, Dr. Fasano, one of the leaders in celiac disease research, states that he doesn’t believe that there are long term effects on health if you choose to do this.

I am a bit uncomfortable with this, as just a few decades ago it was believed that patients could “outgrow” celiac disease. The bottom line is that if a food makes you feel terrible, don’t eat it! You can definitely survive and live a full life without gluten-containing cupcakes, pizza, pancakes, etc. My fellow Celiacs and I are proof of this and we can help you on this journey.

For additional reading on this subject I would suggest Melinda Beck’s article, “Clues to Gluten Sensitivity,” published in the March 15, 2011, Wall Street Journal Health Journal. There is also some helpful information about gluten sensitivity on the website www.celiaccenter.org.

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Hello everyone,


 


My name is Lauren and I am currently a Graduate student at Florida International University.  I am getting my Masters in Dietetics/Nutrition and am currently working on my thesis which involves Celiac Disease and Bone Mineral Density.  We are trying to determine the level of Calcium and Vitamin D malabsorption in people who have been diagnosed with Celiacs Disease.  We appreciate everyone who is willing to help us in our effort to investigate the association between bone mineral density and the onset of Celiacs disease.  Please e-mail me at Laurencari@gmail.com if you are interested in a quick survey that will greatly contribute to our research.  Any level of participation helps and we truly appreciate it!


 


Thanks again,


Lauren Grunspan

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My daughter is one of those that is non celiac gluten senstivity.  Her blood tests (incomplete panel several years ago and never retested), endoscopy, and genetic tests were all negative for celiac yet she was very, very ill and in near constant pain.  She has been diagnosed with failure to thrive, pancreatic insufficiency (fat malabsorption), lactose intolerant, unexplained growth hormone deficiency, constipation, and chronic gastritis.  The GI doctors were stumped and prescribed more medication with each new symptom.  Out of desperation and wanting our daughter to feel better, we tried the gluten free diet last March.  She looks and feels so much better.  It has been amazing to see the changes in her over the past year.  So many of her medical issues have resolved.  I really believe that if she continued gluten in her diet her health would have deteriorated.  Thank you for this article. 

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Hi Lauren,

Thanks for reading. I think that you should post your research information on the research page of the forum because I do not think that my blog has very much traffic. I will email you to participate.

Best wishes!

Jess

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My daughter is one of those that is non celiac gluten senstivity.  Her blood tests (incomplete panel several years ago and never retested), endoscopy, and genetic tests were all negative for celiac yet she was very, very ill and in near constant pain.  She has been diagnosed with failure to thrive, pancreatic insufficiency (fat malabsorption), lactose intolerant, unexplained growth hormone deficiency, constipation, and chronic gastritis.  The GI doctors were stumped and prescribed more medication with each new symptom.  Out of desperation and wanting our daughter to feel better, we tried the gluten free diet last March.  She looks and feels so much better.  It has been amazing to see the changes in her over the past year.  So many of her medical issues have resolved.  I really believe that if she continued gluten in her diet her health would have deteriorated.  Thank you for this article. 

I am so glad to hear that your daughter is feeling better. I am really trying to get the word out about this condition because I feel that so many people are needlessly suffering from it (including some of my own family members). Message me if you are interested in sharing your daughter's story on my blog, I think it would help a lot of people. 

Jess

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