Oh I Give Up!

[prisskitty]

I called the doctor I am seeing on my 'low income' 'helpful' 'insurance'. And anyways, she knows nothing about celiac or gluten-sensitivity. I truly need to get the test immediately. I am eating gluten and I am itching my rash again, that was almost gone! And my stomach is torn apart screaming at me and my acid reflux is worse again. I already know I have it but in order for my mom to give me money back from my paycheck to afford groceries on my own, I have to prove it. This situation has got me wanting to move out!

Are there any trusty tests I can order online or any way I can prove this? It's probably celiac. My stomach goes beserk when I eat wheat. Especially my hernia.

[WheatChef]

You can order the genetic test either from the banner ads on this site or enterolabs. If you have the genes for it then you need to avoid gluten it's that simple. It will also tell you if either only one or both of your parents gave you the genes for it, it had to have come from somewhere after all.

[Skylark]

You can order the genetic test either from the banner ads on this site or enterolabs. If you have the genes for it then you need to avoid gluten it's that simple. It will also tell you if either only one or both of your parents gave you the genes for it, it had to have come from somewhere after all.

Um... The genes are not considered diagnostic by the American Gastroenterological Association. About 30% of the population has DQ2 or DQ8, but only about 1% is celiac. The Enterolab antibody tests are not accepted by the general medical community either because of the tremendously high false positive rate. If waving around a piece of paper your mom isn't likely to understand without a bunch of research is helpful, sure get them, but $369 for the full panel is an awful lot of money for a bunch of inconclusive tests.

There is a home tissue transglutaminase antibody test available now that has been scientifically validated and it's less expensive than Enterolab. You can buy it for $50 from Open Original Shared Link Like any blood test, you do have to be eating a "normal" diet with plenty of gluten. If you come up positive, you can bring the test kit box and info from the website to your doctor.

Also, the itchy rash might be DH. You may be able to get your celiac diagnosis if you bring your doctor info on DH and show her the rash.

[WheatChef]

She's asking for a test to prove it to her mother I believe, not a doctor. The genes are indicative of having a gluten sensitivity, not celiacs and a tTG test would only look for possible celiac disease while telling nothing of a gluten sensitivity. If you have the specific DQ2 or DQ8 genes then you should not be eating gluten. Does this mean that 30% of the population should not be eating gluten? Actually, yes it does. Because 30% of the population have the genes that specifically encode antigens that create an inflammatory response to the gliadin peptide. You do not want to regularly consume any substance that your body specifically recognizes as a pathogen, no matter how many sickly people around you gorge on it.

In reality none of these tests are as effective as removing gluten from your diet from an extended amount of time and then reintroducing it. Does this cause a reaction? If yes, then the results of the blood test don't matter, you shouldn't be consuming it. But for your mother, the genetic test would hopefully be enough.

A skin biopsy of Dermatitis Herpetiformis cells would be very useful in getting the official diagnosis of celiac disease assuming you find a dermatologist who knows how to test for it. However your rash could also just be urticaria or food allergy eczema (which can also be caused by gluten some times).

The real issue may end up being, just what exactly does your mother need you to prove? My celiac specific blood tests came back negative yet many other system markers have been changed as a result of me going gluten-free. As a result my doctor told me that I don't have celiacs but should still remain gluten-free. Because I didn't get an official diagnosis my mother still refers to it as this thing that I "might have". If going gluten-free causes you a noticeable increase in quality of life then what does it harm her to admit that you're having a problem with it? Just how many doctor's written word will she need to convince her and what sort of specialty do they need to be in?

[Skylark]

So you go with the fairly radical view that nobody with DQ2 or DQ8 should eat gluten? I don't think that's substantiated in the biomedical literature. The problem with a blanket recommendation is is that there seems to be a requirement for an inductive event that triggers tTG in the gut and makes the really allergenic deamidated gliadin epitope. The view at a recent celiac symposium is that we have not yet identified all the genes necessary for celiac disease, and that DQ2 and DQ8 are necessary but not sufficient. (With a few exceptions for celiacs who don't have the HLA genotype that serve to underscore our poor understanding.)

As I said, the genetic test is something you can wave around at an obstreperous parent, but it's not a diagnosis. On the bright side, it has almost a 1 in 3 shot at getting you what you seem to need.

[Jestgar]

The genes are indicative of nothing, except that you carry those genes. They neither cause Celiac Disease or gluten sensitivity, nor are you protected from having either of those conditions if you do not carry the genes. A genetic test is interesting, but not informative.

[WheatChef]

Well technically I'm of the view that anyone who carries the genes needs to try a gluten-free diet and if they don't see the need to stick with it then they should repeat the trial every few years.

What do you mean by "triggering" tTG? It is an enzyme that is found all over our body from the day we are born. The development of specific tTG antibody response seems to be triggered in many but none of this is needed to observe gliadin antigens. DQ2.5 encodes for antigens for gliadin, not just deamidated gliadin although deamidation does make the antigens more sensitive.

[Skylark]

I'm sorry, Prisskitty. I didn't mean to hijack your thread with biochemistry but I learned so much at a recent symposium I'm wanting to share the information and answer Wheatchef's question. I'm afraid this post won't be helpful unless you've delved into the details of the immune system and intestinal epithelium.

The induction of celiac disease involves a lot more than the simple presence of DQ2 and DQ8. The first step is thought to be some sort of insult to the mucosa that results in extracellular TG2 (another abbreviation for tTG) to make the deamidated gliadin epitopes.

From an older review:

Open Original Shared Link since the article is not available without an institutional subscription.

"An immunohistochemical study on the differential expression of TG2 in human cells showed that the

small intestine expresses TG2 and that such expression parallels epithelial maturation (Thomazy and Fesus, 1989). More recently, observations have been published on the immunohistochemical localization of the enzyme in normal and celiac disease patients (Molberg et al., 1998; Brusco et al., 1999). In normal subjects, TG2 has been detected in all layers of the small intestinal wall; the

enzyme is expressed in the submucosa while only a little amount is located within the epithelium. An increased expression of TG2 in celiac patients was reported in defined areas of the small intestinal mucosa such as enterocytes, both at brush border and cytoplasm levels, as well as in the extra-cellular matrix (Hansson et al., 2002; Esposito et al., 2003). The presence of TG2 within the extracellular compartment in bioptic fragments from celiac disease patients compared to controls suggests its translocation from the intracellular to the pericellular environment. Since the consequence of the externalisation is an increase in crosslink products in the extracellular space, it has been suggested that changes in both the expression and the location of TG2 is part of a cellular stress response (Wang at al., 1992; Skill et al., 2001; Gross et al., 2003). Furthermore, we demonstrated that in intestinal mucosa of celiac disease patients there is an evident increase of the enzymatic activity compared to control concentrated extra-cellularly in specific

areas of the mucosa, particularly in the subepithelial region (Esposito et al., 2003)."

And from a more recent reveiew:

Open Original Shared Link

"Recent in vivo experiments in mice indicate that TG2 is inactive in the intestinal mucosa in the resting state but is activated following treatment of the animals with polyinosinic–polycytidylic acid (polyI:C; a ligand of TLR3). A possible involvement of TLR3 ligation in TG2 activation suggests that infection with certain viruses (for example, double-stranded RNA viruses such as rotavirus) might be involved in vivo through the provision of ligands for TLR3. Alternatively, it is also possible that inflammation-induced tissue destruction and the subsequent release of intracellular TG2 might trigger its activation. Indeed, the initial CD4+ T cell response may be directed against native gluten peptides and this may be sufficient to induce tissue inflammation and consequently TG2 activation. Support for this order of events has been provided by recent studies using an HLA-DQ8-transgenic mouse model and by the observation that T cell responses in children seem to be mainly directed against native gluten peptides. Whether HLA-DQ2-restricted gluten-specific T cell responses can be initiated in the absence of TG2 activation remains to be determined."

[WheatChef]

Quite interesting stuff about the altered expression, thanks for those articles. I love reading up on this stuff now.

From the patient's standpoint though I don't really understand why they should really care about whether their body is reacting to tTG altered gliadin or just gliadin. The treatment is exactly the same in both cases and the importance of treatment is the same as well. A lot of people come to these boards concerned with determining if they have celiacs or "only" gluten-intolerance. The differentiation shouldn't be as big of an issue as many make it out to be. In both cases your body is being harmed by gluten consumption and in both cases there is only a gluten-free diet available for treatment. The genetic tests aren't really as specific for celiacs as they are for gluten-intolerance, it really shouldn't be any surprise that if you have the genes for gluten intolerance that you're at an increased risk of developing celiac disorder.

From the sound of it Prisskitty isn't really concerned about whether she can show that she has specifically celiacs or gluten-sensitivity, she just needs to show some scientific basis for stating that she has either. Since it's really just a matter of her mother's opinion then it all comes down to exactly what she would need in the end to justify Prisskitty's gluten-free trial and for that a genetic test should hopefully be enough to warrant trying it out.

[Skylark]

Oh, I totally geeked out there. Glad you enjoyed the snippets. Most folks don't want to read about TG2 and CD4+ killer cells and whatnot. They want to know what the heck to eat!

Agreed there is quite a spectrum of gluten sensitivity, and that medicine has a poor grasp on it. The posts in the kids section of the board are particularly illustrative of the diagnostic problems.

I twitch a little whenever Enterolab is mentioned. The science behind the tests just seems really weak. Anti-gliadin is known to have high false positive rates even in blood, and we already talked about the weakness of DQ2 and DQ8 as far as real diagnosis. I suppose it would work for PrissKitty but $369 is so much money for so little real information.

[poopedout]

Oh, I totally geeked out there. Glad you enjoyed the snippets. Most folks don't want to read about TG2 and CD4+ killer cells and whatnot. They want to know what the heck to eat!

Agreed there is quite a spectrum of gluten sensitivity, and that medicine has a poor grasp on it. The posts in the kids section of the board are particularly illustrative of the diagnostic problems.

I twitch a little whenever Enterolab is mentioned. The science behind the tests just seems really weak. Anti-gliadin is known to have high false positive rates even in blood, and we already talked about the weakness of DQ2 and DQ8 as far as real diagnosis. I suppose it would work for PrissKitty but $369 is so much money for so little real information.

Thank you. You just saved me the rest of my $369.00 as I was thinking of getting the genetic testing done without doing the celiac panel. There probably is no point in doing either if the gluten free diet works.