NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Gluten Sensitivity / Celiac Disease (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/)
-   -   getting a diagnosis (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/68887-getting-diagnosis.html)

lahock 01-08-2009 09:52 PM

getting a diagnosis
 
Hi I am new but not even sure that I have a problem. I haven't had gluten for over 2 years but 6 months ago I had a very high antigliadin from DiagnosTechs Lab. I also had a negative blood test testing for Celiac while I was still eating gluten.
Questions:
1.) is there only 1 blood test for Celiac, the tTg?
2.) what does a high antigliain mean?
3.) would I be able to get a positive from Enterolab after 2 years of abstaining from gluten?

My dr is convinced that I have Celiac but would like a positive result.

Questions about my daughter...she is allergic to gluten but also has a negative blood test. She hasn't eaten gluten for 2 years and 3 months. She just had a biopsy and it came back negative. Does this mean she is NOT Celiac and has just the gluten allergy?
Thank you so much for any help you can give me.
Cyn

glenntaj 01-09-2009 09:17 AM

Well, there are a lot of possibilities here.
 
First, while currently most medical people think of the anti-tranglutaminase (Ttg) blood test as the most specific for celiac, it may not catch celiac in early stages, as it seems to have a correlation with degree of villous atrophy. And, it may not be as valuable for those who have gluten sensitivity and are not showing intestinal symptoms, but show neurologic or myologic ones.

This is in addition to the info that as many as 20% of biopsy-proven celiacs are negative on all blood tests.

The anti-gliadin has some controversy to it in that it may be a more sensitive indicator of a reaction to gluten, but not as specific to intestinal damage as the anti-transglutaminase. There are other cross reactivities that may result in a "positive" anti-gliadin result. But, some researchers, including Dr. Hadjivassiliou, have shown certain gluten-sensitive patients show with only an isolated anti-gliadin result (and in fact, one of my neighbors falls into that category).

There have been other tests used to support a gluten-sensitivity diagnosis from time to time as well--most notably that anti-endomyesial test--but none of these have a perfect track record. In essence, the best test often is a gluten-free trial to see if one simply functions better over time.

Many people have reported continuing levels of antibodies for a while even after going gluten-free--but one must also be careful that one is completely gluten-free, as it's very easy to get accidentally glutened and get spurious results on later tests. (We had one person who discovered she was getting gluten particles from the BIRD FEED she was putting out in her feeders, of all things.)

I'm not sure what you mean about your daughter--how is she "allergic" to gluten? Allergy is usually thought to mean an immediate IgE reaction to the offending substance, but gluten autoimmunity is a longer-term IgA/IgG reaction, specifically the former. The IgA reaction is so important in these tests that people who have congenitally low IgA generally cannot be tested with the anti-transglutaminase--the results are skewed by the lack of IgA. So how was her allergy serologically determined?

One great source for info on all this, by the way, is The Gluten File, which is right at the top of the board here in the Useful Websites area--lots of info on testing and the differing manifestations of gluten sensitivity:

http://neurotalk.psychcentral.com/thread1872.html

Jaspar 01-09-2009 11:51 AM

Quote:

Originally Posted by lahock (Post 441447)
My dr is convinced that I have Celiac but would like a positive result.

Questions about my daughter...she is allergic to gluten but also has a negative blood test. She hasn't eaten gluten for 2 years and 3 months. She just had a biopsy and it came back negative. Does this mean she is NOT Celiac and has just the gluten allergy?
Thank you so much for any help you can give me.
Cyn

A YOUNG family member had rather severe intestinal malabsorption and osteoporosis yet the blood test for celiac was negative! Using Enterolab (http://www.enterolab.com) showed the member to be positive for gluten sensitivity, malabsorption, and genetically homozygous.

Now on a gluten-free, casein-freen, etc diet, that family member is much better.

Probably had Celiac, but did not have the biopsy. Even biopies can be negative, and the doctors already knew the malabsorption existed, so what's the point? It seems absurd that Celiac is only diagnosed with the biopsy... which is invasive and can be falsely negative as well. Supposedly, it will be negative if on a gluten-free diet, but can also be negative at random because not all atrophy is consistently spread in the intestines.

You can also get the Igg blood tests.

lahock 01-11-2009 11:52 AM

Thank you for your reply. So I guess there is no test that is completely fail safe, is that right?

My intestines are in pretty bad shape but my Ttg was negative. My dr wants to do another one but I have been off gluten for over 2 years.

My daughter is allergic to gluten (stomach cramps, vomiting, diarrhea, etc) but I wanted a diagsnosis for her just to have it for her sisters or future children.

What other cross reactivities may result in a "positive" anti-gliadin?

Can you direct me to the symptoms of advanced Celiac Disease?
Cyn



Quote:

Originally Posted by glenntaj (Post 441680)
First, while currently most medical people think of the anti-tranglutaminase (Ttg) blood test as the most specific for celiac, it may not catch celiac in early stages, as it seems to have a correlation with degree of villous atrophy. And, it may not be as valuable for those who have gluten sensitivity and are not showing intestinal symptoms, but show neurologic or myologic ones.

This is in addition to the info that as many as 20% of biopsy-proven celiacs are negative on all blood tests.

The anti-gliadin has some controversy to it in that it may be a more sensitive indicator of a reaction to gluten, but not as specific to intestinal damage as the anti-transglutaminase. There are other cross reactivities that may result in a "positive" anti-gliadin result. But, some researchers, including Dr. Hadjivassiliou, have shown certain gluten-sensitive patients show with only an isolated anti-gliadin result (and in fact, one of my neighbors falls into that category).

There have been other tests used to support a gluten-sensitivity diagnosis from time to time as well--most notably that anti-endomyesial test--but none of these have a perfect track record. In essence, the best test often is a gluten-free trial to see if one simply functions better over time.

Many people have reported continuing levels of antibodies for a while even after going gluten-free--but one must also be careful that one is completely gluten-free, as it's very easy to get accidentally glutened and get spurious results on later tests. (We had one person who discovered she was getting gluten particles from the BIRD FEED she was putting out in her feeders, of all things.)

I'm not sure what you mean about your daughter--how is she "allergic" to gluten? Allergy is usually thought to mean an immediate IgE reaction to the offending substance, but gluten autoimmunity is a longer-term IgA/IgG reaction, specifically the former. The IgA reaction is so important in these tests that people who have congenitally low IgA generally cannot be tested with the anti-transglutaminase--the results are skewed by the lack of IgA. So how was her allergy serologically determined?

One great source for info on all this, by the way, is The Gluten File, which is right at the top of the board here in the Useful Websites area--lots of info on testing and the differing manifestations of gluten sensitivity:

http://neurotalk.psychcentral.com/thread1872.html


glenntaj 01-12-2009 06:21 AM

Well, people with really advanced celiac--
 
--almost always show considerable flattening of the instestinla villi, and numerous nutrient malabsoption syndromes. It's the latter that often gets physicians attention, as such people show up with numerous vitmain/mineral deficiencies (if the docs bother to test those!), low serum protein, often high CPK from the body's attempt to catalyze muscle for protein, and lots of neural symptoms, both from the autoimmune attack itself and from the nutrient deficiencies.

Many may also show dermatitis hepatiformis, though one doesn't have to be in the dire stages to have this.

As gluten increases intestinal permeability through the mediation of Zonulin, which regulates epithelial cell spacing in the gut, many more nasty pathogens have a tendency to slip past the alimentary tract, and this can result in direct infection, further autoimmune reaction . . .the sad part is that hundreds of symptoms can result from the chain reaction of gluten sensitivity, and it's hard to pull these apart from other possible causes.

Fortunately, most people don't get to such dire stages. People vary greatly in their autoimmune response to gluten--a tiny amount that results in drastic symptoms in one person may not cause much of a noticable reaction in another. But there's a lot of "silent" celiac and gluten sensitivity out there--exacerbated by many doctors lack of knowledge about what to check for and how--that may suddenly explode due to some trigger (stress, infecton).

As far as the antigliadin test goes, some researchers feel that the way the test is done may produce reactions to individual antibodies that are not specifically anti-gliadin, which is why many prefer than anti-transglutaminase. Still, I feel that a positive anti-gliadin does indicate a reaction to something--and Dr. H's research seems to point that some people with a particular genetic make-up are more likely to show an anti-gliadin positive and neural symptoms to gluten than an anti-tranglutaminase positive and "classic" gastric celiac.

I still think that given your and your daughter's history you're better off avoiding gluten altogether; consuming it just to see if a positive test will come up seems like overkill, especially given her symptoms. After all, a gluten-free diet is not a drug intervention and can't hurt you, though it can be a bit of a learning curve with all the stuff gluten is hidden in.


All times are GMT -5. The time now is 03:13 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.