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-   -   Gluten Intolerant but not Celiac? (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/167967-gluten-intolerant-celiac.html)

Idiopathic PN 04-14-2012 06:43 AM

Quote:

Originally Posted by glenntaj (Post 869747)
--see if you can get the doctor to add that total IgA test--if it comes out low, results from the other tests may be skewed.

Thanks. I will try to get the total IGa test from my primary care physician when i get the results of the IGa/IGg Gliadin and Transglutaminase.

pabb 04-15-2012 12:18 PM

Quote:

Originally Posted by Idiopathic PN (Post 869749)
Thanks. I will try to get the total IGa test from my primary care physician when i get the results of the IGa/IGg Gliadin and Transglutaminase.

it doesn't work that way, it has to have been ordered. See if you can get the doc to call the lab and have them add that test, if they still have your blood speciman

Idiopathic PN 04-15-2012 02:48 PM

Quote:

Originally Posted by pabb (Post 870160)
it doesn't work that way, it has to have been ordered. See if you can get the doc to call the lab and have them add that test, if they still have your blood speciman

I had the test last Friday. The lab said the result will be sent to my doctor this coming Monday or Tuesday.

Can I take the total IGa test separately when I get another request from the doctor?

glenntaj 04-16-2012 05:56 AM

A total IgA can be done--
 
--from any blood sample, but has to be specifically listed--it's not a "standard" test.

You can certainly tell the doctor why you think it should be done--and point him/her to the Gluten File if you need to for papers that explain why a low total IgA may skew the results of other celiac blood tests.

Idiopathic PN 04-18-2012 07:09 PM

Hi. I got my IGg and IGa Gliadin and Transglutaminase results today. The results are as follows:

Deaminated Gliadin Abs, IgA : 2 (Negative is from 0 - 19)
Deaminated Gliadin Abs, IgA : 3 (Negative is from 0 - 19)

Transglutaminase IGa : <2 (Negative is from 0 - 3)
Transglutaminase IGg : <2 (Negative is from 0 - 5)

There is a paragraph below the Transglutaminase result that reads:

Tissue Transglutaminase has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

I was unable to get the total IGa test. With my results, do you think it is still necessary to get the total IgA test, or are my numbers conclusive of being not celiac/gluten intolerant?

I read just now on the Gluten File link that the Gliadin test should not be substituted with deaminated gliadin when you have neurological symptoms. But, the laboratory clinic where I (always) go, used deaminated gliadin (without informing me).

In the protocol of medically acceptable diagnostic tests and results, is the "deaminated gliadin" reliable enough to be conclusive for patients with neurological symptoms?

Thank you for your inputs.

Mary

glenntaj 04-19-2012 06:03 AM

There's a lot of controversy--
 
--regarding that question.

Dr. Hadijvassiliou's work seems to suggest that many people with neurological presentations of gluten problems, with or without concommitant gastrointestinal symptoms, may only show up with a isolated abnormal anti-gliadin IgG and/or anti-gliadin IgA; this may be due to the fact that the anti-transglutaminse IgA is the test for which abnormal figures are most associated with villous atrophy (you probably ran across this in the Gluten File) and such people do not typically have large-scale atrophy (or at least, not yet). There's also the suspicion that people who present that way may have a different genetic profile--HLA-DQ1, as opposed to the HLA-DQ2/DQ8 types more closely associated with celiac.

But then again, as many as 20% of people with biopsy-proven celiac show up negative on the anti-IgA tranglutaminase.

The tests results you've listed certainly don't constitute a definite bell-ringing diagnosis. But there's enough variability in the tests to say it's not an absolute negative, either. You could always try a gluten-free trial just to see if things get better symptomatically--no one needs to give anyone permission for that.

Idiopathic PN 04-19-2012 06:37 AM

Quote:

Originally Posted by glenntaj (Post 871488)
--regarding that question.

Dr. Hadijvassiliou's work seems to suggest that many people with neurological presentations of gluten problems, with or without concommitant gastrointestinal symptoms, may only show up with a isolated abnormal anti-gliadin IgG and/or anti-gliadin IgA; this may be due to the fact that the anti-transglutaminse IgA is the test for which abnormal figures are most associated with villous atrophy (you probably ran across this in the Gluten File) and such people do not typically have large-scale atrophy (or at least, not yet). There's also the suspicion that people who present that way may have a different genetic profile--HLA-DQ1, as opposed to the HLA-DQ2/DQ8 types more closely associated with celiac.

But then again, as many as 20% of people with biopsy-proven celiac show up negative on the anti-IgA tranglutaminase.

The tests results you've listed certainly don't constitute a definite bell-ringing diagnosis. But there's enough variability in the tests to say it's not an absolute negative, either. You could always try a gluten-free trial just to see if things get better symptomatically--no one needs to give anyone permission for that.

Well, I think, getting a gluten-free diet should be the way to go... This will be hard for me. I dont know where to start, but getting a relief from my PN symptoms will be the best motivation for me. Oh God, I am willing to try everything just to give me relief from this pain.

Thank you.

Idiopathic PN 04-19-2012 03:37 PM

Oatmeal
 
I am reading about gluten free foods. I encountered articles about oatmeal to be confusing. Is it safe to eat or not?

Thank you.

glenntaj 04-20-2012 05:56 AM

Ah.
 
Another area of controversy. (Although it's good to be posting about these areas for those who are fairly new to all this.)

Oats do not contain the same type of gluten protein that celiacs react to. The structure of the oat protein molecules is similar to that of whet, rye, and barley, but different in a few respects.

The problem over the years has come from contamination of oats with those other proteins. Often, oats are grown in fields near (or even within) fields in which these gluten-containing grains are grown, and it is a simple matter for there to cross-contamination by wind, by pollinators, but perhaps most importantly, during the processing of the grain into food.

The key, I believe, is to consume oats harvested/milled from a facility of machine line DEDICATED to oats--not one that is also used to process on of the other grains. Any small amount of contamination risks a reaction in the sensitive. It used to be very hard to find oats processed in such a manner, but it has gotten easier with the interest in gluten-free eating, and oat products will usually say whether they have been created using a "dedicated" oat processing facility. (If the product doesn't indicate that, be suspicious.)

Idiopathic PN 04-21-2012 08:52 AM

Hi. I am starting on gluten free diet . I have read that spices and dairy products are safe but I read some of them should be specifically labelled as gluten free. I am particular on the basic spices like ground pepper, cinnamon, paprika. For dairy, I am interested on no fat milk, no fat yogurt and no fat cheese.

I bought yogurt yesterday and it was really labelled gluten free. But I didn't see gluten free for milk and cheese as well as the spices.

I will appreciate your inputs.
Thanks.


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