24014 What's the Latest News on Non-celiac Gluten Sensitivity? - Celiac.com
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What's the Latest News on Non-celiac Gluten Sensitivity?

Celiac.com 06/11/2015 - Non-celiac gluten sensitivity (NCGS) is a somewhat controversial emerging disorder. There is no current medical consensus regarding its criteria, and study data have been inconclusive.

Photo: CC--Lawrence WangMany alternative health practitioners recommend gluten-free diets for people who claim to be sensitive to gluten, but do not have celiac disease. Despite numerous reports of people without celiac disease experiencing celiac-like symptoms when eating gluten, there are currently no clear diagnostic guidelines for NCGS. NCGS is still diagnosed by excluding celiac disease, and finding no reliable celiac biomarkers.

A team of researchers recently set out to evaluate the prevalence, diagnostic exclusion of celiac disease and the efficacy of a gluten-free diet (GFD) for NCGS patients.

The research team included J. Molina-Infante; S. Santolaria; D. S. Sanders; and F. Fernández-Bañares. They are variously affiliated with the Department of Gastroenterology, Hospital San Pedro de Alcantara, Caceres, Spain, the Department of Gastroenterology, Hospital San Jorge, Huesca, Spain, the Department of Gastroenterology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals, Sheffield, UK, the Department of Gastroenterology, Hospital Universitario Mutua Terrassa, Barcelona, Spain, and with CIBERehd, Barcelona, Spain.

Their team conducted a PubMed search through December 2014. They defined NCGS as self-reported gluten intolerance, negative celiac serology and absence of villous atrophy. They also included studies evaluating the impact of a GFD on patients with irritable bowel syndrome (IBS).

They found that rates of NCGS (0.5–13%) varied considerably. Seventeen studies met the inclusion criteria for NCGS. The studies included 1561 patients, 26 of whom were children. HLA haplotypes could not be linked to histology, either by normal or lymphocytic enteritis (LE)] in 1,123 NCGS patients. Nearly half (44%) of NCGS patients tested positive for HLADQ2/DQ8 haplotypes.

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Using advanced diagnostic techniques that combine LE and HLADQ2/DQ8 haplotypes, the team reclassified 39 (20%) of 189 NCGS cases as celiac disease.

They found a higher than expected family history of celiac disease and autoimmune disorders in NCGS patients. For HLADQ2 positive diarrhea-predominant IBS patients, a GFD resulted in variable, but significantly improved stool frequency.

Rates of NCGS are extremely variable. A subset of NCGS patients might actually be part of what many researchers refer to as celiac disease "light."

The long term benefit of a gluten-free diet for NCGS patients is currently unclear, but certainly the diet, if well-balanced, would not cause any issues. The researchers do note that HLADQ2 positive diarrhea-type IBS patients might gain symptom improvement from a gluten-free diet.

Clearly more studies are needed to determine if NCGS is a bona fide medical condition, as many suspect. Until then, there is very little treatment available from medical practitioners, and many people with self-diagnosed NCGS will doubtless be left to self-treatment. For many, this will include avoiding gluten.

Do you, a loved one, or someone you know have gluten-sensitivity without celiac disease? Share your thoughts and comments below.

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3 Responses:

 
Carol
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said this on
16 Jun 2015 5:54:34 AM PDT
My son and I both have gene for celiac and family history but not an official diagnosis of celiac. We both have extreme reaction to gluten and have dramatic improvements in health on GFD. No doubt in my mind that we have a yet unrecognized form of celiac.

 
Erogo Proxy
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said this on
16 Jun 2015 1:39:28 PM PDT
I do have some form of non celiac wheat sensitivity, doctors still want to run more test and take a sample from my intestines (can not afford the procedure). Last specialist I saw that as far as he could tell my body was treating wheat itself as a toxin, reaction is generally swollen lymph nodes, extreme irritability, and numbness in hands and feet, followed by bloating and throwing up for hours when it hits my large intestines later from as much as a crumb. I even have mild reactions (Extreme bloating, irritability, and throwing up for hours) if I consume gluten free wheat grass.

Quite frankly my body is a bit of a enigma to my doctors, and my dietician says he actually finds it funny what I tested positive to allergy wise (Corn, Beets, Bell Peppers/Paprika as major allergens above 16 and whey, peanuts, soy, as minor allergens) and more so how these all developed in the last few years.

 
Nancy Maurer
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said this on
01 Jul 2015 5:29:49 AM PDT
Both my son and I have antibody and biopsy diagnosed celiac disease. My daughter who was also antibody tested was negative. Because insurance would not pay for a biopsy she started on a gluten free diet also. She has been gluten free for 9 years now and her symptoms have improved. So there is something to NCGS, even if it is just an earlier stage of celiac and by going gluten free it is stopping the intestinal damage.




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Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac. I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.

It is too bad that so often a full panel isn't done. Glad your appointment got moved up and hopefully you will get a clearer answer from the GI. Do keep eating gluten until the celiac testing is done. Once the testing is done do give the diet a good strict try. Hang in there.

That makes sense...I cried with relief when I got my diagnosis just because there was finally an answer. Please know that you are not weak or crazy. Keep pushing for testing. It could still be celiac, it could be Crohns. Push your Dr's to figure this out. Best wishes.

Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. I know I'm not crazy, but you know.

From what I have read online there is about a 1-3% chance of getting a false positive for celiac disease from a blood test. Was it a blood test that you got done? It may be worth your while to get a biopsy or more testing just to confirm it. I know being gluten free is a pain but it is better than getting cancer or other auto immune disorders.