Are My Kids Too Young To Be Tested?

[mamato4]

Hi All. I was diagnosed with Celiac last week. In an effort to determine if my children also have Celiac I asked our pediatrician to order blood work for all 4 of them. I have an 8yo, 4yo, 2yo, and 7 month old. He explained that the tests for the 8yo and 4yo should be "pretty accurate", that the 2yo's tests will most likely be inconclusive and that the baby is too young to test.

My question is this: how is there even a board for parents of babies with Celiac if a baby is too young to be tested?! I am new to all this, so I am confused. Can someone fill me in on what I need to know?

Also, I'm not 100% sure I am confident in my diagnosis based on blood work alone. I took myself off gluten for a few weeks before the blood tests, then ate a small amount the day before my blood draw and two days before (and was VERY sick for almost a week). I'd love help interpreting if someone would be so kind.

Thanks so much!

Deamidated Gliadin Abs, IgA 2 Range 0-19

Deamidated Gliadin Abs, IgG 3, Range 0-19

Endomysial Antibody IgA Negative

Immunoglobulin A, Qn, Serum 118 Range 70-400

t-Transglut tTG IgA <2 Range 0-3

t-Transglu tTG IgG 8 Range 0-5

WBC 3.9 Range 4.0-10.5

[AGH2010]

All I can speak to is your 2 year old. My daughter was tested when she was 27 mos old and her EMA came positive. We decided to retest 6 weeks later and this time both her EMA and ttgigg were positive. She's having her endoscopy done tomorrow morning (am very nervous).

Was your GI willing to diagnose you as celiac based only on your blood test? I took my daughter to 3 GIs and all of them said they wouldn't be willing to formally diagnose her without an endoscopy.

[StephanieL]

I have hear the "2 and younger" thing too and I am not sure how accurate that is. My DS was tested/dx at 3. We did test DD who was a tiny baby at the time (I think around 7-8 months if I remember correctly) and as guessed she was neg. but I wanted to be sure since I knew we would be going gluten-free for all the kids in the house and figure it was better to test her early over not at all since we would have them gluten-free.

I am trying to decide if we should try wheat with her now (she's 3) and if I should test the baby before he weans (he's only 10 months old so it'll be a while yet but he most likely won't get gluten except what he may be getting via breastmilk) after he weans for a while either.

If you don't think it'll be a giant hassle, I would test everyone or at the least the oldest three but that's just me

[tarnalberry]

Blood tests just aren't reliable in those under 2. They don't have the same immune system you do (and won't until they are closer to 7, at least, so it's not the testing magically is reliable, but there's a better chance than when they were younger).

But that doesn't mean that they can't be tried, you just need to keep in mind that a negative may not *actually* mean a negative. (Though false negative rates can by high even in adults.) Kids are still diagnosed through elimination diet, biopsies, blood tests, genetic tests, and really instinctive docs who listen to their patients.

Your blood work isn't really useful to interpret, imho - you were gluten free for a few weeks before hand, so it wasn't a "fair test". (No one knows how long it takes for any one person to have their test results changed significantly by a gluten-free diet, we can't predict that ahead of time. Had you tested before you were gluten free, your results may well have been quite different, but no one can say.)

[mamatoc]

My 21 month old had the blood tests done after her 18 month appointment and is having an endoscopy tomorrow morning 8/9/12. The gastroenterologist explained that the mixed results on her bloodwork - the more "general antibody markers" in layperson's terms were positive but the more specific antibody markers were negative - could be due to her young age. But because she did have 3 positive markers and she is barely 21 pounds and 31 inches tall, she recommended the endoscopy.

[Swimmr]

My question is what is wrong with drawing blood and doing a genetic test? Why are docs SO adamant about doing a biopsy? Why go the invasive route? From my research, a genetic test is 100% accurate. And happened to be the only way I got a positive test. Biopsy was inconclusive, and TWO regular blood tests that were false negatives.

I have a 9 month old that I want to get tested. I can't stand not knowing for sure!

[StephanieL]

Why go the invasive route? From my research, a genetic test is 100% accurate.

Just because you have the genetics does not mean you have Celiac. It means you are predisposed to getting it, not that you ACTIVELY HAVE it. It's just like cancer genetic tests, you may have the genetics for breast cancer but it doesn't mean you have it at this moment.

Blood work and biopsy are the only ways to tell if you actually HAVE Celiac (and more Dr. are going with the 5 criteria of blood word, symptom resolution on the gluten-free diet, genetics and a few other over biopsy because the blood work is getting advanced enough to be conclusive.)

[Swimmr]

Just because you have the genetics does not mean you have Celiac. It means you are predisposed to getting it, not that you ACTIVELY HAVE it. It's just like cancer genetic tests, you may have the genetics for breast cancer but it doesn't mean you have it at this moment.

Blood work and biopsy are the only ways to tell if you actually HAVE Celiac (and more Dr. are going with the 5 criteria of blood word, symptom resolution on the gluten-free diet, genetics and a few other over biopsy because the blood work is getting advanced enough to be conclusive.)

So there's nothing in the genetic test that waves a red flag saying "HEY you have Celiac!"? I have been completely mislead then. Wow...so why wasn't I told this? I honestly haven't ever read it either. OMG. I'm sort of shocked right now.

[StephanieL]

So there's nothing in the genetic test that waves a red flag saying "HEY you have Celiac!"? I have been completely mislead then. Wow...so why wasn't I told this? I honestly haven't ever read it either. OMG. I'm sort of shocked right now.

No, nothing about the genetic test says you have Celiac just the predisposition to it. That is why it isn't considered diagnostic and often times insurance doesn't cover the testing.

[semily]

My understanding of the genetic test is the same as StephanieL's; a positive genetic test means you have a predisposition to develop Celiac (or another of a handful of autoimmune diseases including diabetes and Hashimoto's).

My older son was essentially diagnosed at 27 months, and without a biopsy. He had been growing extremely slowly since 6 months, and then became extremely ill around his 2nd birthday (bloating, massive diarrhea, fevers, lethargy, etc) and at 27 months he was 30" and down 20 lbs. All blood tests came back overwhelmingly positive for Celiac. The pediatric GI we saw gave us the option to biopsy or not. He said he could be 99% certain our son had Celiac without the endoscopy, so we skipped it. Because he was so ill and frail we couldn't get comfortable with doing the procedure to get the extra 1% certainty.

Now, nearly a year later, we just had a followup visit with the GI. He said in recent months things are shifting further away from needing the endoscopy for an "official" diagnosis when there is a strong positive blood test. Despite not having the endoscopy, he has given our son a diagnosis of Celiac disease, given his initial strong test results, symptoms presenting at time of crisis, and response to a gluten free diet. 10 months after removing gluten from his diet (and our household) our son is 28.5" and 34.5". Still really small compared to his classmates, but he's healthy and growing. And his IgA TTG is only baaarely above normal.

Our younger son was only 8 months old when things got scary for his brother. The GI recommended that both the baby, my husband and I had bloodwork done. It showed that my husband and younger son tested positive for the gene pairing, but negative for celiac. At 12 months the baby's growth slowed way down, and at 15 months he started having GI symptoms (as well as extreme fussiness). He was only eating a small amount of gluten each day (shared snack at daycare). We did another bloodtest which still came back negative, but we removed all gluten anyway. By 18 months his symptoms went away and his growth has picked back up. The GI can't give him a positive diagnosis, but we all agree he should remain gluten free. We can revisit doing a gluten challenge when he's older if we feel we need things to be official...