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Ellsabeta

Gluten Sensitivity Research?

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Hi Everyone

This is one of my first posts, so I just wanted to throw out a thank you to you all. I have been a lurker for months and find this forum a source of comfort, information and community. It's because of you -- the one's who post, who call the companies, the ones who ask restaurants to cook gluten-free -- that the awareness is growing and making life for the newly diagnosed a bit easier.

Now, on to my question:

I'm seeing my PCP on Friday to go over my thyroid numbers (they're hyperactive). My GI doctor (who doesn't trust Enterolab) found these numbers. I don't want to go through the same thing with my PCP (the disbelief that Enterolab is legitimate/that gluten sensitivity is a real issue) so I was wondering if anyone knows of any hard facts/research about gluten sensitivity?

I know Dr. Fine hasn't published his research on his testing methods, but I'm having a hard time finding anything about "gluten sensitivity." My first GI doctor told me "there's no such thing."

This has been a frustrating journey, but at least I know you all can relate.

By the way, here are the results from my Enterolab test (in case they don't post in my signature -- still trying to figure this out):

Fecal Antigliadin IgA 78 (Normal Range <10)

Fecal Antitissue Transglutaminase IgA 43 Units (Normal Range <10)

Fecal anti-casein (cow's milk) IgA antibody 69 Units (Normal Range <10)

HLA-DQB1 Molecular analysis, Allele 1

Thank you!!!

Liz


Enterolab Results: 5/7/2007

Fecal Antigliadin IgA 78 (Normal Range <10)

Fecal Antitissue Transglutaminase IgA 43 Units (Normal Range <10)

Quantitative Microscopic Fecal Fat Score

Fecal anti-casein (cow's milk) IgA antibody 69 Units (Normal Range <10)

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

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Hi Liz,

I have to tell you that most PCP's are very under educated when it comes to Celiac's Disease. However, since your test results came back about the thyroid issue, there is no reason for the doctor not to trust the results. My PCP tested me several years ago and found that I had Hypothyroidism. There are a lot of us out there with other related problems linked to Celiac's, remember you are never alone. :) Now, there are several websites that have all kinds of answers that may help you. If you type gluten sensitivity into the google spacebar provided on this site, it will give you several sites that you may find very useful. Be bold, and print out the info for your doc! Never be afraid of educating a physician! I had to do it many years ago, and there was hardly any info out there at the time. I hope that this helps, at least a little. :) Good luck!

Vicki

G.F since Sept. 1995

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Hi Liz,

Most published studies about gluten pertain to celiac itself or to the neurological effects of gluten sensitivity.

My PCP did take my Enterolab results seriously, but only as one piece of evidence in a larger pattern. I made a very thorough packet for her about my symptoms (both GI and non-GI) and which ones resolved when I stopped eating gluten.

I reassured her that I knew Enterolab was a useful piece of information but not a medically accepted test. To her, dietary response was the more important evidence.

She did mark my chart gluten intolerant and supports me 100% on the Gluten-free Casein-free diet.

Email me off-list if you'd like a copy of the packet I made. You might be able to use it as a template. Good luck!


gluten-free May 17, 2007; casein-light since June 2007

Dx'ed gluten/casein intolerant by Enterolab. Family doc dx'ed "gluten sensitive" after dietary response. DQ 6 & DQ 7

8 year old daughter dx'ed gluten/casein intolerant & malabsorption by Enterolab and has been GFCL since June 12, 2007. Excellent response to diet, including growth! Tummyaches & irritability are gone! DQ 5 & DQ 6

Husband has DQ 5 (elementary, my dear Watson!). Self-diagnosed gluten-intolerant by diet response and challenge.

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Hi Vicki and Zarfkitty,

Your replies are extremely helpful.

I plan on printing out each thing I find on gluten sensitivity -- and we'll see how open-minded my PCP is :unsure:

That being said, I'm going to email you zk and use your packet as a template -- that's very, very kind of you!

I'll let you all know how the appointment goes.

Thanks again!

Liz


Enterolab Results: 5/7/2007

Fecal Antigliadin IgA 78 (Normal Range <10)

Fecal Antitissue Transglutaminase IgA 43 Units (Normal Range <10)

Quantitative Microscopic Fecal Fat Score

Fecal anti-casein (cow's milk) IgA antibody 69 Units (Normal Range <10)

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

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