Traveller

I have never heard this before. That does not make sense to me because why wouldn't it be Celiac then?--since Celiac is specifically diagnosed by the Marsh scale.

Please tell us here you heard this? It is usually accepted that villi damage is because of Celiac or a few other things but NCGI isn't one of them.

<references deleted>

Here's some quick references from my friend Google:

http://celiacdisease...-Research_2.htm

"Many physicians will not diagnose celiac disease unless intestinal damage reaches Marsh III orMarsh IV levels."

http://www.biomedcen.../1741-7015/9/23

"GS were considered those patients with negative autoantibody serology (endomysium antibodies-immunoglobulin A (EMA-IgA) and tTG-IgA), normal mucosa (Marsh stage 0) or increased intraepithelial lymphocytes (Marsh stage 1) and improvement of symptoms within days of the implementation of the diet:

http://www.cleveland...tive-disorders/

"The hallmark of celiac disease is Marsh 3 or villous atrophy"

http://www.celiaccen...nd-definitions/

Non-celiac gluten sensitivity has been clinically recognized as less severe than celiac disease....Some individuals may experience minimal intestinal damage, and this goes away with a gluten-free diet.

http://www.medscape....rticle/757916_3

"According to the European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) current criteria, duodenal villous atrophy (Marsh stage III and onwards) is the necessary criteria for diagnosing celiac disease and recommending a gluten-free diet....Despite these observations, caution is still necessary before diagnosing celiac disease in patients with Marsh I lesions. Intraepithelial lymphocytic infiltration can be a common, nonspecific inflammatory response of the epithelium to a number of noxious or inflammatory signals."

Although the only treatment for NCGI is a gluten-free diet, there is no generally accepted test for it. However, NCGI sometimes causes intestinal inflammation and a Marsh 1 or 2 degradation to the intestinal villi, and that may create issues with absorbing certain nutrients properly. I noticed that you did not advise the full results of the endoscopy/biopsy. You might want to look at the Marsh level, and for indications of dairy intolerance.

FWIW, the best test I took for NCGI was elimination and reintroduction. The second best tests were how I react whenever I get glutened. And yes, my physician has told me that I do not absorb many items properly. Therefore, I supplement.

I have PN secondary to gluten sensitivity, or so says one of the leading celiac researchers. My symptoms arise shortly after being glutened, and start with pain in random parts of either foot, progressing to uncontrolled leg movements (leg "jumping"). Unsually the symptoms stop after a few weeks. I went to see the research doctor after the symptoms did not stop. He told me that I must have hidden gluten in my diet. That gluten was stripping myelin off the nerves, and allowing signals to short circuit. He also said that if I found and removed it the hidden gluten, in 6-8 months the myelin should build back up to the point where the symptoms should resolve. I found the hiddel gluten (a package of Hershey's miniatures, of which I was eating 2-3 a day over several weeks), and in 8 months they symptoms disappeared.

But they reappear with each glutening. At least I know why. Interestingly, the symptoms are worse when I fly.

Has anyone ever been to the University of MD Center for Celiac Research? Heard anything about them? When I return to the States at the end of June I'll be in the Washington DC area and am considering getting an appointment here to have them review my files/case.

I went there a year or so ago for an evaluation. It sounds like you want an evaluation as well. For my appointment, I first was interviewed by several doctors who also looked at the medical records. Then they went to speak with Dr. Fasano, and all returned for a brief discussion with me. My evaluation was prompted by one specific symptom that occurs when glutened, and Dr. Fasano was able to shed helpful light on that symptom.

For me, it was well worth the trip.