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Should I Push For An Endoscopy

Thrillrose

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Thrillrose Rookie
Thrillrose
Posted

My son recently had blood work done and at the end of November his pediatrician gave him a celiac diagnosis just off his results.  

 

Tissue Transglutamise IgA Abs  35  with results between 7-10 borderline <7 negative

Gliadin deamidated IgG Abs 15 with 7-10 borderline and <7 negative.

 

 

I just don't feel comfortable having a lifetime diagnosis with one blood test. The only issue he's had is constipation, which started at the time of toilet training, when he would hold it in. This was at 2.5yrs, he's now 8. He's otherwise fit and healthy, has grown well etc.

 

He was tested due to his sister having very low positive results. 0 on the TTG IgA and 16 on the gliadin.

 

None of my other children have tested positive, I have 6 altogether and neither me or my husband have it either.

 

Can you tell for sure off these tests?

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SMRI Collaborator
SMRI
Posted

He has Celiac.  Those tests are very specific and to hit a positive on both, no question.  Not all people, especially younger children, have symptoms.

LauraTX Rising Star
LauraTX
Posted

Yep, it is Celiac.  Have you had genetic testing done on the whole family?  That will be valuable to tell who will need to be screened in the future.  If you want an endoscopy to see how bad the damage is, it may help with an assessment of that, but the diagnosis is solid without it.  You can always ask for a referral to a GI doctor to discuss the risks versus benefits of an endoscopy.

nvsmom Community Regular
nvsmom
Posted

Two positive tests almost always means celiac disease.... Actually, one positive test almost always means celiac disease.  By all means, go ahead with the endoscopy but be aware that the endoscopy misses up to 1 in 5 celiacs so even if there is a negative result, she still has celiac disease based on the blood work.

 

Symptoms are not to be relied upon to diagnose celiac disease,  I had stomach aches as a kid but they didn't slow me much. Beyond that my only symptom was constipation.  It didn't affect my growth either, I was in the 100th percentile until my teen years.

 

Remember that you need to retest the rest of your kids every 2 years or as soon as symptoms develop. Celiac can appear at any point in one's life so they'll need to be on the look out for it for the rest of their lives.

 

Best wishes.

  • 3 weeks later...
MitziG Enthusiast
MitziG
Posted

No doubt about it, sorry. Your daughter most likely has it also. Low positive is like being "a little bit pregnant." You can actually have massive intestinal damage have completely negative blood work. She needs an endoscopy done pronto. If you want to put your son through it, keep in mind, celiac can be easily missed with an endoscopy. The intestinal area is the six of a football field, and celiac can show up in small patches. Biopsies ate hit and miss. A negative biopsy doesn't mean he doesn't have it, even if the GI tells you that. You will find more knowledge on this board than a hospital full of doctors. His blood tests are undeniably, indisputably positive for celiac, and if you put doubt in his mind about that, you are doing him a great disservice.

MitziG Enthusiast
MitziG
Posted

Also, constipation is a hallmark of celiac. My 11 year old was on laxatives from 2 months until he was five...because he was undiagnosed and I didn't know any better to ask about celiac. He was BREASTFED and constipated..that just doesn't happen unless something is really off. They just didn't bother to find out what it was. Gave him acid reflux pills for the spitting up and laxatives to poop

treated the symptoms because they were too lazy to look for the cause. Makes me madder than words can say because he suffers permanent issues because of being undiagnosed for 6 years.

Thrillrose Rookie
Thrillrose
Posted
  • Author

Thank you so much for all your replies I really appreciate it.

My daughter has been on a gluten free diet for quite awhile now so I know an endoscopy won't work for her. The gi was going to trial her again when she turned 2, but with everything else that has happened I think I'll just keep her on the diet.

My son is back on a gluten-free diet and he says he feels much better, so I think I will skip the endoscopy.

Thanks again

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