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newtonmom2boys

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newtonmom2boys Newbie

My 4yr old son was being tested for other things when it's now showing that he may have celiac disease. He has tested positive on his blood work and we are waiting to go see the GI dr next week. I'm having a hard time grasping all of this because he doesn't have one symptom of Celiac. He eats everything! I'm feeling overwhelmed about all that is going on and bad for him. Has anyone else gone through this?

thanks


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hackerman Newbie

I totally Understand, My daughter Samm 14, is the same way..She was diagnosed in 2009 or 2010 by process of elimination due to high liver enzymes. Anyway other than that she had no symptoms. She also has Chron's and PSC. Things can be very overwhelming in the beginning, ok and other times too..WE did learn how much damage is done to her intestines if she eats Gluten. And how it can eventually affect other areas of her body. I wish you the best of luck..You are not alone

Heather

carecare Enthusiast

I am very interested to know what symptoms he was having that the dr's chose to do a celiac panel. Most doctors don't just test for celiac unless there are symptoms or if another family member has it. Kudos to your doctor for doing the test and possibly getting your son healthy before too much damage is done.

Best of luck next week with the GI. 3 of my kids just had endoscopies done recently and we are waiting for the results. The kids handled the procedure really well.

newtonmom2boys Newbie

I am very interested to know what symptoms he was having that the dr's chose to do a celiac panel. Most doctors don't just test for celiac unless there are symptoms or if another family member has it. Kudos to your doctor for doing the test and possibly getting your son healthy before too much damage is done.

Best of luck next week with the GI. 3 of my kids just had endoscopies done recently and we are waiting for the results. The kids handled the procedure really well.

HE wasn't having any symptoms for celiac at all. He was tested because he had some blood work done and his IGA levels came back low so they retested and did a panel. I'm just very confused on how he could have this when he has no GI problems at all

stanleymonkey Explorer

eating everything can be a symptom, when my daughter was at her worst and not absorbing much she would eat us out of house and home, even eating things she would normally turn her nose up at. We manger to get her to eat spinach and shrimp, now she is on th road to recovery she tells me she doesn't like the taste!

carecare Enthusiast

Was he just having a routine blood test then? Interesting they did an IGA for that. Is he being seen for other nonGI issues? My son who tested positive on blood work was not having any GI issues. His complaint was muscle pain..which resolved on a gluten free diet and came back stronger when reintroducing gluten for the biopsy. His pediatrician didn't want to do the blood test telling me he has not been having any stomach problems or GI problems so that was her reasons for not wanting to test for it. I knew better though and knew that celiac doesn't have to present with any GI issues what so ever...and can present with just about anything. When the test came back positive after her reluctance to test she didn't even want to see us and just referred us to a GI.

pricklypear1971 Community Regular

eating everything can be a symptom, when my daughter was at her worst and not absorbing much she would eat us out of house and home, even eating things she would normally turn her nose up at. We manger to get her to eat spinach and shrimp, now she is on th road to recovery she tells me she doesn't like the taste!

Funny you say this. Since I went gluten-free I've noticed my son has gotten pickier - and not about stuff that is gluten-free (he eats all of that). He turns away stuff he has always eaten. They go through stages but it is interesting to think about.

Btw one of his tests came back +....


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newtonmom2boys Newbie

Was he just having a routine blood test then? Interesting they did an IGA for that. Is he being seen for other nonGI issues? My son who tested positive on blood work was not having any GI issues. His complaint was muscle pain..which resolved on a gluten free diet and came back stronger when reintroducing gluten for the biopsy. His pediatrician didn't want to do the blood test telling me he has not been having any stomach problems or GI problems so that was her reasons for not wanting to test for it. I knew better though and knew that celiac doesn't have to present with any GI issues what so ever...and can present with just about anything. When the test came back positive after her reluctance to test she didn't even want to see us and just referred us to a GI.

He was having his IGA level tested because they were thinking of giving him a hib booster because he gets sick a lot in the winter. That's when it came back. He has no complaints at all.no muscle pain, all the stuff i have researched he doesn't seem to fit, I just don't know what to make of it.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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