anybody explain kids celiac blood work?

[kpk]

My daughter had bloodwork done as part of a well child check up, she's 6. The results say "probable celiac and consider a biopsy". They've already scheduled an appointment with a GI specialist - but it's not for 3 months.

Her Tissue Transglutaminase Ab, IgA, S came back at 12.5 which is high and her Immunoglobulin A (IgA), S came in at 107 which falls within normal...but says celiac probable? Looks like those numbers could also flag dermatitis herpetiformis...and she's always had SUPER sensitive skin. She has no other symptoms.

j/w if anyone here has an educated opinion on these numbers that I don't have to wait 3 months to hear.

 

[307]

The skin condition is seen in Celiac patients.

The tissue transglutaminase test is both sensitive and specific.

Welcome to the world of Gluten Free. It's really not too bad after you get used to it.

Sincerely,

Fellow Celiac, 23 years gluten free

 

[307]

If you're doing some diet changes, try to help her focus on all of the things she CAN eat, rather than focusing on all the things she can't have. It's a mental shift that will hopefully help her navigate a tough change for a little critter.

Also, be very thankful for the fad diet and attention on gluten in the last decade. It's made eating gluten free infinitely easier, since it's known and labeled much, MUCH better than it was 20 years ago. There are also many many many more gf things available in stores.

But I"m sorry she's going through this. It's not exactly easy, even though it's easier now.

 

[Willie IV]

My wife and son are celiac. Celiac symptoms vary in individuals with some being super sensitive to gluten and others not as bad. For example, my wife and son can eat foods that may have some cross contamination (think french fries cooked in same oil as chicken strips) and they have no adverse effects. Some people aren't as lucky and get seriously ill with only a very small amount of gluten ingested. Hopefully your daughter isn't that sensitive. Skin irritations/rash are part of it but clear up pretty easily following a GF diet. And 307 above is correct.... being gluten free 20 years ago was almost impossible but now is easy. Our whole family eats that way and probably for the better!

 

[kpk]

@Willie IV that's kind of what I'm wondering is if there are varying degrees to this as she has no symptoms we've noticed, and she never complains her stomach hurts or anything of the sort. She eats a ton of bread, pizza, pasta, etc. My nephew on the other hand wasn't growing, always sick, and his TTG number was well over 100. Neighbor kid was sick all the time until he went GF too.

Does it just not make a difference if the test result is over 10? Is a 12.5 the same as over 100?

 

[Willie IV]

In my experience with this, the biopsy is ordered to confirm the bloodwork. Diagnosing Celiac is tricky and goes undiagnosed often - although less these days. It took my wife months and several docs to get diagnosed 22 years ago. Once we knew, she saw immediate relief with a GF diet. Hang in there man. GF can be a challenge for a kid cuz friends are eating cookies, donuts etc and your kid has to make different choices. It's a challenge.

 

[Ucsdryder]

@sndmn11

 

[Renegade14]

that's kind of what I'm wondering is if there are varying degrees to this as she has no symptoms we've noticed, and she never complains her stomach hurts or anything of the sort. She eats a ton of bread, pizza, pasta, etc.

My wife got diagnosed with type 1 diabetes 2 years ago, and then celiac 6 months after that. Autoimmune diseases tend to go together. Your doctor should have already explained this, but I'm going to for everyone reading this thread who doesn't actually know what celiac is and hopefully I can help you out a little. Most people think it's an allergy to gluten. Celiac is not an allergy.

Your intestines have villi that absorb nutrients. When a person with celiac eats gluten, their body sends an immune system response to kill off the villi in their intestines. Damaged and blunt villi limit nutrient absorption. Your daughter probably doesn't have serious symptoms right now, but she will become more sensitive as she gets older and goes gluten-free. Going completely gluten-free for one month can completely change things. So why not keep eating gluten and stay the serious symptoms a little longer? Because if her villi keep getting damaged, it basically creates scar tissue and they have a hard time recovering. This increases the risk of permanent nutrient absorption issues, cancer, and other things down the road. So when people say "oh just have a little bit", they don't realize the long term risks of continually "glutening" yourself.

I'm not a doctor, but from the numbers it looks like she has celiac which will probably be confirmed in 3 months. Obviously she can't go completely gluten-free before the biopsy because they need to see the tissue damage, but when she does feel free to reach out to me if you need any advice. My wife and I have figured out recipes for EVERYTHING, even a goldfish recipe with less than 5 min of prep work. Making the change is a lot of work, but not nearly as bad as I thought it was going to be. Good luck OP!

 

[HUNTNUT]

@Willie IV that's kind of what I'm wondering is if there are varying degrees to this as she has no symptoms we've noticed, and she never complains her stomach hurts or anything of the sort. She eats a ton of bread, pizza, pasta, etc. My nephew on the other hand wasn't growing, always sick, and his TTG number was well over 100. Neighbor kid was sick all the time until he went GF too.

Does it just not make a difference if the test result is over 10? Is a 12.5 the same as over 100?

Make sure you are comparing results with the same units of measure. I've only seen these results in U/ml but you never know about a misplaced decimal or a unit change (U/dl or something different).