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At What Age Was Your Child/children Diagnosed Celiac?

salexander421

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salexander421 Enthusiast
salexander421
Posted

We are undergoing a gluten challenge with our almost 3 year old and our 17 month old. We feel like it's necessary to undergo the testing process although I seem to second guess that decision every day. I've read a lot of posts (mainly on a different board) about celiac typically not showing up with children this young. I've even heard some say it's not common to diagnose under 10, this sounds a little extreme. I guess I just want to know my chances of getting an accurate test result for my girls or if this is all in vain. Thanks!

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celiac-mommy Collaborator
celiac-mommy
Posted

My daughter was 4 and my son was 2 1/2.

DD had a + blood test and biopsy

DS had a - blood test, suspicious biopsy but positive dietary response

precious831 Contributor
precious831
Posted

My daughter was diagnosed at 2 yrs old. She was negative on the celiac panel but was diagnosed through elimination diet. She had the typical celiac symptoms. The doctor and us were not willing for her to undergo the biopsy especially after he said it might be missed anyway. So we're happy the way it was handled.

After about 1 yr on the gluten-free diet she kind of stopped growing so she went completely grain-free and she started gaining weight again.

CrunchyChristianMama Newbie
CrunchyChristianMama
Posted

My DD is 2 and she started showing symptoms around 12 months old that got increasingly worse around 18-24 months.

divamomma Enthusiast
divamomma
Posted

My daughter is 4 and had a positive blood test.

Lunabell Apprentice
Lunabell
Posted

My daughter was almost 5. The doctor did consider testing her as a baby because she was so tiny. I wish I had listened to him, though aside from reflux, she was otherwise fine. The reflux didn't raise alarm bells for me at the time, since her older sister also had it. Her sister has since tested negative.

seezee Explorer
seezee
Posted

She was 10 and had a positive blood test and biopsy. The doctor did the blood test as a family screening (my nephew has it) and because her weight did not increase from her 9-year check up to her 10-year check up even though she grew several inches. Other than being alarmingly thin and somewhat tired she didn't seem to have many other symptoms. At the time, I was worried she was anorexic because she would ask for food and then just shred it and push it around her plate. Pediatrician was quite concerned at her drop from the growth chart and ordered a ton of tests and the celiac panel was the only positive one. We were referred to see a pediatric GI and ended up going to see three before I found one we both liked. We're in Boston which is probably the one place you can find a dozen or so specialists for anything. Life is so much much better. She is 12 now and doing really well in school (straight A's) and has a lot more energy. I am kind of wondering if she had it for a long time or not. Up until she was diagnosed she had more difficulty at school and was more likely to lose her temper-- but I can't tell if the change is due to the diagnosis/gluten-free diet or that she just got serious in general this year. She also had some absolutely dreadful, mean spirited, cranky teachers in K-5 and in 6th has fantastic ones. My nephew was able to get a diagnosis based only on his positive blood work and response to the diet. There are doctors who will do that for little ones. My sister thinks if he wants to do a gluten challenge he can do so when he's a teen. I think they figured his out when he was about 3.

Personally, it really helped me to get the biopsy, but we were able to schedule it very quickly. For my sister it was equally important that she didn't put her son through that. She took him off gluten immediately with the positive blood test and he got better so quickly that there was no way she was going to make him sick again. He had much more of the classic symptoms like a big belly and skinny arms and legs and his tummy always hurt.

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ljgs Explorer
ljgs
Posted

My daughter was 13. She had been having on and off stomach pains through 7th grade. Nothing debilitating, but I just felt something might be "off." Boy, was it ever!

curlyq Newbie
curlyq
Posted

My oldest daughter was 6 when diagnosed. My 2nd daughter was 5 1/2 when diagnosed. Both tested positive through blood tests, no endoscopies were done.

sarahbella636 Newbie
sarahbella636
Posted

My son was 22 months when diagnosed via biopsy. His bloodwork (at 19 months and 21 months) also came out positive. His only symptoms were slow weight gain and a lot of stinky diapers each day. Good luck to you!!

salexander421 Enthusiast
salexander421
Posted
  • Author

Thanks everyone for your responses!

kmross Newbie
kmross
Posted

We are new to all of this. My son has been sick for about a year now. He'll turn ten in April. He has had constant Diarrhea, joint pains, limbs going numb for no reason, peeling fingers to the point of bleeding, heart burn, headaches, etc. The list goes on and on. We've had so many tests done and everything has come back negative. His intestines are so swollen and yet no one can figure out why. So on our own we have decided to go gluten free to see if it will help. So far he seems better. Any help and advice you can give is much appreciated

Marlie Apprentice
Marlie
Posted

My daughter was diagnosed at 13. She tested negative on the more widely used tests. Came up positive on both of the new DGP tests. Biopsy was positive. Not sure how long she's had Celiac but she has a history of severe chronic headaches, sinus issues and fractured growth plates. Can't say if that was Celiac or not. However, before her diagnosis she was experiencing stomach pain on a level 9. Doctor's thought she had appendicitis but didn't .

salexander421 Enthusiast
salexander421
Posted
  • Author

My daughter was diagnosed at 13. She tested negative on the more widely used tests. Came up positive on both of the new DGP tests. Biopsy was positive. Not sure how long she's had Celiac but she has a history of severe chronic headaches, sinus issues and fractured growth plates. Can't say if that was Celiac or not. However, before her diagnosis she was experiencing stomach pain on a level 9. Doctor's thought she had appendicitis but didn't .

Which tests are the new DGP tests?? What does that stand for?

Roda Rising Star
Roda
Posted

Youngest son is 6 and went gluten free a month before his birthday. Not yet officially diagnosed but had a positive ttg and allergist say's it is celiac but won't comfirm without a GI confirming it. I elected out of a GI consult and biopsy at this time and put him gluten free since I am blood/biopsy diagnosed.

Oldest son who is almost 10 is not diagnosed and has had repeated negative blood work(has increased a little from past test though). He sees an allergist for IgE allergies (he takes allergy shots) and the allergist feels he is gluten intolerent at the very least. I need to put him gluten free but meeting resistance from him and spouse because of the "negative" blood work.

Dixiebell Contributor
Dixiebell
Posted

Hi salexander421.

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG

srall Contributor
srall
Posted

My daughter is not diagnosed Celiac. She is 7 1/2 and I put her on a gluten/dairy/corn free diet in October. HUGE improvements.

Marlie Apprentice
Marlie
Posted

Which tests are the new DGP tests?? What does that stand for?

Deamidated Gliadin Peptide Tests IgA and IgG. My daughter's tests were done through Prometheus Labs in California. She was negative on the EMA and Ttg Iga tests. Her total IgA level was 67 on the low side of normal range. But the DGP IgA and DGP IgG were both positive. If they hadn't included that test we still wouldn't know that she has Celiac Disease.

4athomej Newbie
4athomej
Posted

My DD is 13 years as well...complained of stomach aches through out 7th grade. She is also very active but had a tendency to ingure herself. Doc couldn't figure out why it was taking so long to heal each time...so blood testing it was and that explains a lot. She goes for scope and biopsy within a couple weeks. We have gone gluten free with her but are finding it difficult.

salexander421 Enthusiast
salexander421
Posted
  • Author

Hi salexander421.

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG

Thank you! So, I'm assuming that's the same as "Deamidated Gliadin Abs, IgA & IgG"??

salexander421 Enthusiast
salexander421
Posted
  • Author

My DD is 13 years as well...complained of stomach aches through out 7th grade. She is also very active but had a tendency to ingure herself. Doc couldn't figure out why it was taking so long to heal each time...so blood testing it was and that explains a lot. She goes for scope and biopsy within a couple weeks. We have gone gluten free with her but are finding it difficult.

How long has she been gluten free? Going gluten free before the scope could cause a false negative since your body begins to heal when gluten free.

cyberprof Enthusiast
cyberprof
Posted

Which tests are the new DGP tests?? What does that stand for?

From celiac.com:"IgA tTG continues to display the most accurate diagnostic tests for a positive celiac diagnosis, as well as for excluding a negative celiac diagnosis. However IgG DGP antibody tests were shown to be more effective at identifying 'false negatives' and had more success in determining celiac in patients that had IgA deficiency, and in children under two years old."

https://www.celiac.com/articles/22043/1/Is-DGP-Serological-Test-the-Wave-of-the-Future-for-Celiac-Disease-Testing/Page1.html

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