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).

 

[LostArra]

I have a 40 year old daughter who was diagnosed about 15 years ago. Her recommendation is to always lean towards foods that are naturally gluten free rather than MADE into a gluten free substitute. Most of the GF subs are highly processed shit that is bad for any human.

 

[4BarN]

Believe what Renegade recommends. He knows his stuff. I have a celiac daughter. You don’t do this part time. It’s all in all the time due to the risk factors. Once you accept and get your head around it, it’s okay. It’s eating simple and plain food.


Sent from my iPhone using Tapatalk

 

[307]

@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?

I was symptom free as well. Caught some mild anemia on blood work in grad school. Iron storage near zero, total cholesterol was 70. After ruling out internal bleeding, I asked the MD to order the test for "non tropical sprue" and he sort of looked at me funny but did anyway. Turns out it was positive. I was just malabsorptive, but really no overt symptoms (was training for a marathon at the time and eating tons of pasta...)

So, yeah, the presentations can vary widely.

 

[mxgsfmdpx]

My mom, sister, and two of my brothers have celiac. Compared to 20 years ago the options for good food/snacks/drinks is insane.

Most of us would honestly be healthier in general cutting out todays nasty ass bread and carbs.

 

[COHunter33]

I went 17 years without any symptoms, then had a bout with mononucleosis, and developed extremely itchy blisters on my skin that same week. The virus triggered the autoimmune response (according to the doc). After 6 months of misery they biopsied one of the blisters and confirmed it was celiac. My only symptom is/was the skin manifestation which is DH. My mom has celiac as it is genetic. I have never had a single stomach issue in my life associated with it. Even now when I accidentally eat gluten I only get blisters. No stomach issues at all. Even without stomach issues it’s not worth eating gluten, it increases inflammation and cancer risk. BTW I’m 28 years old now. Being gluten free isn’t that hard once you get into the swing of it

 

[Bluefish]

My wife went gluten free about 7 years ago. I do the cooking and honestly it’s pretty easy to be gluten free when cooking at home. The hard part can be eating out and travel if you are doing fast food.

 

[NealS02]

MD here but by not means a GI specialist. Just to kind of break things down for you, IgA is a component of your body defense force on mucosal surfaces, including your gut, lining of your mouth, etc. against things considered foreign or a threat. Gluten containing foods are partially digested with TTG produced and remaining present in the bowel. People with celiac get pain and bowel inflammation because their body inappropriately sees the TTG as an “invader” and attacks the lining of the intestines.

The TTG IgA AB test is indicative of an active immune response against the “invader” gluten byproduct TTG. When elevated it is highly suggestive of the inappropriate immune response seen in celiac. You noted her test was elevated, so she checks this box. The reason they ordered the more generic test of plain, old IgA is that a low level can give a false negative result if the IgA TTG had come back low or normal. If she had a normal IgA TTG but also a low IgA then the first test would be considered unreliable. With normal IgA and elevated TTG IgA the results are highly suggestive of celiac.

Many celiac patients have dermatitis herpetiformis, which is essentially a rash development associated with the celiac process. I hope this helps and good luck!

 

[sndmn11]

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.

Definitely do the endoscpy biopsy.

I am 40 and learned about 7 years ago that I have Celiac. I had a lifetime of a rash that never went away and was always told it was eczema. So bad that I would have to not play football some years because of the way the rash would get infected from the rubbing, or as an adult, people thinking I had drugs problems due to my face and forearms.

I went and saw a new dermatologist and he looked at and right away knew it was dermatitis herpetiformis. The endoscopy a few weeks later confirmed the Celiac diagnosis.

I did not have gastro issues until my late 20s, and then they were rampant. Frequent sinus issues and random sicknesses, and I have also had over 10 orthopedic surgeries for "wear and tear" type parts that much older folks see.

The rash took about two years of a Rx called Dapsone to clear, and I rarely take it. I am drastically healthier physically but also have better mental aquity after going gluten free. I can't express how life changing getting this figured out has been.