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Need To Be On Gluten To Have Blood Testing Done?


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My 19-month-old son has had frequent, loose stools and scaly rashes since I can remember. I always suspected some sort of food intolerance but wasn't incentivized to do anything until his most recent check-up showed that he went down and off his growth chart (he was under the 5% for weight and not much better for height). I decided on my own to put him on an elimination diet at the beginning of the year just to see what happened. His stools became solid and less frequent (2 a day rather than 5 a day). He also gained two pounds in 1


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Destiny Stone Rising Star

Hi, I am new to the forum,(thus the empty reply) but I work for Celiac.com & we have an autoreply that I thought would help you. For your review:

Celiac.com cannot offer any medical or dietary advice, other than to recommend that people with celiac disease should maintain a 100% gluten-free diet for life, and anyone who believes that their symptoms could be caused by celiac disease or gluten intolerance should be screened for it (we recommend that everyone be screened for celiac disease because its symptoms can range from none to almost any unexplained health problem--not to mention the fact that around 1 in 100 people actually have it and most never get diagnosed and treated).

Screening for celiac disease is a simple blood panel that includes these tests (please note that you should still be consuming gluten in order for the antibodies to be present):

Anti-endomysial antibody IgA (EMA)

Anti-reticulin antibody (ARA)

Anti-gliadin antibody IgA (AGA)f

Anti-Gliadin IgG (AGA)F

Anti-Tissue Transglutaminase (tTG) Antibodies

I hope this helps! Best wishes to you & your little guy. :)

tarnalberry Community Regular

My questions for anyone out there with some knowledge of testing for celiac disease are:

1. Does my son need to go back on gluten to take the blood test? Please say no!

2. Should I have the blood test given prior to the visit with the GI?

3. Should I have him tested for the two celiac-related genes? My husband

mogal Newbie

Question for y'all.

I had the Enterolab Intolerance Test with a score of 33. My Dr., says she would like to have the celiac panel done to confirm Celiac Disease. I'm confused after reading all the posts on where to get the best test...I'm not sure how to determine that.

Quest Labs blood tests include only 3 of the 5 that you recommend. TTG, IGA and one of the Anti-Gliadin antibodies...(not sure which one). The cost is $273. I live in Kansas City and there's a Quest lab nearby.

LifeExtension Lab offers this for $99:

Deamidated gliadin IgA; tissue transglutaminase IgA; serum IgA quantitation.

Is there a better lab to get a broader spectrum panel or better pricing or ???

I'm new to all of this so not sure where to go to get the best test without breaking the bank. (limited health insurance coverage), yet still get the best panel.

Also, I have gluten-free for one month...how long do I need to be eating gluten for blood testing?

THANKS for your help.

debi

mommida Enthusiast

~You are testing for the damaging reaction for gluten in the body.

~Only have the blood test prior to the ped gastro appointment if the two doctors are on the same page and want the same panel drawn. The results should then be sent to both docs. The labs are somewhat determined by your health insurance.

~Genetic testing is still "new". Not as readily covered by insurance. Positive results can get a "probable" Celiac diagnoses, but not the "gold standard". Not every Celiac gene has been identified. The test can be said to be 98% accurate. Not good enough if you fall into the 2% the lab knows the are going to miss.

~Damage resulting from Celiac or DH destroys the villi which interfers with all nutrient absorbtion and digestion.

~There are so many differering opinions on how much gluten to be eating and how long before the test. Most say the amount should be at least a bread slice a day, and I don't know the best length of time to tell you. Ask your doctor, some say 2 weeks to 2 months. (it is said that one micron, about the size of a crumb, can cause a symptomatic reaction) Gluten challenges can be dangerous. My daughter was hospitalized for dehydration.

Good Luck. I hope you find you answers quickly and your healing is even quicker.

happygirl Collaborator

And, there are newer/better tests in place of the AGA test: anti DGP

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    • trents
      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
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    • trents
      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
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