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When To Test Sibling Of A Celiac?

aerickson8

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aerickson8 Newbie
aerickson8
Posted

My 5 yr old was dx with Celiac at age 2 and has grown wonderfully and lived a healthy gluten-free life.

Her little sister who is 2.5 has mostly been gluten-free but in recent months I've slacked. The pediatrician (whom i completely trust), told me a couple of weeks ago that I should start regularly giving her a little gluten every day and test her at her 3rd birthday which is at the end of March. I notice that she is more frequently complaining of tummy aches and tonight was in a lot of pain after a trip to the ice cream store where she ate an entire gluten filled cone. I'm wondering if I have to wait 2 more months to have her blood tested, or if I could test her now instead? I don't want to wait and watch her go through any pain if she is in fact celiac.

Do I run the risk of having to draw blood again at the end of March and have her tested now even if the results come back inconclusive? What would you if you were me? I just don't want to see her in pain. I want to know!!

Any advice is appreciated!

Thanks,

Alicia in Mill Creek, WA

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2Boys4Me Enthusiast
2Boys4Me
Posted

If it were me, I'd have her tested now. It's not as though age three is the magic time where blood tests become definitive proof. If she has to have her blood drawn again in a couple of months, then so be it. I don't mean to be unsympathetic, but if you don't make a big deal of the blood draw and distract her during it, then it probably won't be a big deal. Some M&Ms after wouldn't hurt either.

Many people here will tell you that both blood tests and biopsy in young children is notoriously unreliable. My son had overwhelmingly positive blood results and a positive biopsy at 5 1/2 years old. His older brother had definitely negative results. Neither of my children complained of symptoms, though. We intend to test big brother every couple of years.

Good luck.

Irishlass Rookie
Irishlass
Posted

My dd had a negative blood test, but her symptoms disappeared as soon as we took the gluten out of her diet.

Your dd's body is definitely telling you something- do you need a positive blood test to confirm what you probably already know?

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      High DGP-A with normal IGA

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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