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3 Year Old Daughter Might Have Celiac Disease

greeneyes82781

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greeneyes82781 Newbie
greeneyes82781
Posted

My daughters are almost 2 and 3 and we recently took them for a blood food allergy test because they both were having bowel issues. My oldest was complaining of her tummy hurting for a while now so I switched her to Lactose free milk. Well the allergy tests came back negative. My dr finally returned my call after I had called numerous times and told me that my youngest daughter was fine and her Celiac Disease test was normal, but it was my oldest she was concerned about. At this time the only blood work I knew they were testing on my oldest was for food allergies. So the dr said her immunogloubins (IGA) were 252 the normal is 16-75 for her age. Which in my drs words means that she has some severe inflammation in her gut that is caused by something. She told me to get her to A GI specialist ASAP. Well of course the soonest appt was for end of April. So I decided to request a copy of the results and I also asked the dr to call the hospital to get her into see this specialist sooner, well they called back and said the only way they could do that is if she was losing alot of weight and was very sick. So I get the labs and what I see on there that the dr had added on a Celiac Disease test and that where the abnormality was 252. She did not tell me that on the phone and that would have saved alot of worrying. We still dont know for sure whats wrong. We have an appt Feb 19th. But tonight was not a good night she was in severe pain like Ive never seen her, she was very thirsty,shes normally kinda on the constipated side and shes had very loose stool for 2 days. And she has been VERY hungry. She had hiccups earlier and I almost thought she was going to puke. She looks so pale and at one point she was like doubled over holding her tummy saying in hurts. She has also complained of back pain in the past. I was very close to taking her the ER tonc)ight, but after she had dinner she seemed better. I kept re assuring her that if she doe not feel good we can go to the dr. And at one point she actually said ok lets go. But you never know how to read them at this age. I just dont wanna wait any longer if the food I am feeding her is possibly bad for her, or if its something else. I want a CBC done since her father has a kidney didorder (even though its not genetic) Then I have Crohns Disease so I want to figure this out. Please anyone with any advice or anything let me know. If I have to I will take her to the ER.

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seezee Explorer
seezee
Posted

You could start by reading this about what the blood work means.

https://www.celiac.com/articles/57/1/Interpretation-of-Celiac-Disease-Blood-Test-Results/Page1.html

I also found it super stressful once we had a positive blood test and my daughter started to feel really crappy that it took such a long time to see a specialist. It helped us get in sooner to keep calling. You may want to ask if you can come in a week before your appointment to get the celiac panel done and other tests done. That was what made me the angriest is that we waited a month to see the first GI and then all she did was say she wasn't sure about the lab work the pediatrician had done, ordered a bunch more, and said to call her in a week because she wouldn't have any information until she saw the results. The hardest thing is that they want you to continue feeding your child gluten until they see you and then do one test after another. It goes against a mother's instincts to feed their baby something that might really be harming them. The doctors really pressure you about it. It does sound like your baby is really feeling rotten. You may also want to call your pediatrician and see if she can help you get in sooner. I think little kids rarely complain unless they are really sick.

ryebaby0 Enthusiast
ryebaby0
Posted

It would be interesting for YOU to have a celiac screen -- ttg test -- to see if your Crohn's is misdiagnosed celiac. But anyway....the 19th is as fast as specialists move, and they've moved you up from April. It's a week (which is forever when your child is sick, I've been there)

If it were me, I would take her completely off dairy, and off gluten until then. Yes, yes, you need to be eating gluten to get a reliable blood test. But she's already had one! If she's gluten free until the 19th, and her symptoms subside AND then her NEXT celiac screen is negative (that 252 comes down into a normal range) well, that's pretty conclusive too.

purple Community Regular
purple
Posted

It would be interesting for YOU to have a celiac screen -- ttg test -- to see if your Crohn's is misdiagnosed celiac. But anyway....the 19th is as fast as specialists move, and they've moved you up from April. It's a week (which is forever when your child is sick, I've been there)

If it were me, I would take her completely off dairy, and off gluten until then. Yes, yes, you need to be eating gluten to get a reliable blood test. But she's already had one! If she's gluten free until the 19th, and her symptoms subside AND then her NEXT celiac screen is negative (that 252 comes down into a normal range) well, that's pretty conclusive too.

Ditto what ryebaby said. I think you should be tested, it runs in families.

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