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Benefits Of Gluten Challenge Before Genetic Testing?
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Hi there,

I'm in the midst of getting diagnosed, mainly to find out whether I have celiac or non-celiac gluten intolerance. I went off gluten to see if it would improve my symptoms, not realizing I would have to be on it in order to do testing. My PCP didn't want me to suffer by going back on for the blood work, so I did the first round of blood tests without having ingested gluten for over a month.

I'm wondering, since I can't get a straight answer, what the benefit is of doing a gluten challenge to get blood work done versus doing the genetic test first. (My insurance will cover the genetic test...) It seems like the blood tests with celiac are so unreliable...

Anyway, I'd appreciate any insight you all have gotten over the years!

Thanks in advance!

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The genetic test, while interesting, can not diagnose celiac disease. Many people carry one or more of the genetic markers usually associated with celiac disease, but never actually develop the disease. Most doctors believe that an negative result on the gene test rules out celiac disease, but there is evidence that there may be other genes. Doctors in Europe are more likely to recognized those factors than those in North America.

Your genes are your genes, and eating or not eating gluten will not affect the results of genetic testing.

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Thanks psawyer... I know that the genetic test won't diagnose, but I guess I was curious as to why it isn't done first to find out whether it's even possible I have it before I put myself through the awfulness of eating gluten again. It's helpful to know it isn't conclusive, though.

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The genetic test really doesn't give you much helpful information and in some cases, (my son) can lead your doctor to believe you DON'T have it. There are always exceptions, so having the common genes or not really doesn't mean much. My son's genes said "not likely" but his intestines said "absolutely".

What tests did the doctor do after you were gluten free? Any blood test other then the genetic one will be useless. You are not likely to have any antibodies after being gluten free for so long. My blood tests went from positive to negative after only 10 days.

cara

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Thanks, Cara. My doc wants to avoid having me suffer as much as possible, so she wanted to try the initial antibody tests, knowing that they would probably come out negative.

I guess I'll know to question the genetic test results when they come... I'm sure you can all understand my unwillingness to gluten myself!

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Thanks, Cara. My doc wants to avoid having me suffer as much as possible, so she wanted to try the initial antibody tests, knowing that they would probably come out negative.

I guess I'll know to question the genetic test results when they come... I'm sure you can all understand my unwillingness to gluten myself!

It is always beneficial to do genetic testing because if positive, can add 1 more test to your arsenal of knowledge. Yes, it can come out negative for the predisposition for celiac but that just may mean you are NCGI....which means you still need to be gluten-free if you feel a lot better on the diet. If you really suffer when eating gluten to the point where your doctor does not want you to do a gluten challenge, I think you have your answer.....no gluten for you! ;) Honestly, I know people who are NCGI and their symptoms are as bad as mine when glutened.

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
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    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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