Scared And Unsure If It's Celiac

[Spookymom]

Hi, I'm new here and found your site while trying to figure out what is wrong with my daughter. She will be 9 in a week.

It started in September, when she was diagnosed with thrush. She said her tongue hurt and I heard there had been hand foot and mouth at school, so I assumed maybe that was it. Nope, her ped. said thrush 10 days of nystatin. That didn't cure it, so they gave her diflucan. Still didn't work. So I tried some gentian violet and that seemed to clear it up, but two weeks later it looked like it was back. She gets white spots on her tongue, along the died and at the tip. So now her ped does more diflucan and nystatin together and runs immunoglobulian tests and diabetes test. He says she's lost dome weight, but didn't say how much. All came back fine, but her iga was low normal. So we had to go to her allergy doc for more immune tests. Her allergist says it's not thrush. Her tests have come back fine ( still waiting on the pneumonia vac results) so I'm relieved it's not thrush, but concerned because I'm not sure what it is. I thought maybe canker sores, but they are not sores, just white bumps.

I started looking into mouth problems and read about celiac. I feel paranoid now because I feel like everything could be pointing at that. She has been farting lately, not bad, but still farting. She has been eating much more over the last couple weeks. She poops maybe once a day or every other day, but she has been somewhat constipated like that since birth. She has complained of her legs hurting (shin area) occasionally ( tonight she did) and a couple of times she's said her heart hurt when she ate, or finished eating. That happened once last week.

She is very tall for her age, and skinny 57 inches and 63 lbs. other than her ped. Saying she lost some weight a month or so ago, I don't know what to do.

I should probably get her tested, but are these symptoms normal for a celiac kid?

Thanks for any insight.

[cyclinglady]

There are over 300 symptoms for celiac disease. It is hard to say if she has it. The tests for celiac disease can be found on this link to the University of Chicago's celiac website:

Open Original Shared Link

Best wishes to you and your daughter!

[nvsmom]

It could be celiac disease. As Cycling lady said, there are over 300 symptoms for celiac disease, including no symptoms at all, so we could not say for sure if her symptoms are from celiac disease.  Get her tested, it's the only way to find out.

 

If she is tested, she must be eating gluten in the 2-3 months prior to testing so do not try the gluten-free diet yet.

 

These are the tests you want:

• tTG IgA and tTG IgG (most common tests done)
• DGP IgG and DGP IgA (best tests for kids)
• EMA IgA or EMA IgG (detects advanced damage, similar to the tTG tests)
• total serum IgA (a control test)
• AGA IgA and AGA IgG (older and less reliable tests which were replaced by the DGP tests)

 

If her total serum IgA is low, it will affect her IgA based tests (tTG IgA, DGP IgA) by causing false negatives. A low normal IgA should not affect her results, but to be safe, ensure she has the IgG based tests (tTG IgG, etc) done too.

 

I was a constipated, very tall and slim kid too. Those are not the usual symptoms but they are common enough, don't let a doctor brush off your concern just because she is not the "typical" celiac kid with slowed growth and diarrhea.

 

Best wishes to you.  

[mommida]

My daughter did have creamy white spots on her tonsils and the back and side of her tongue before she was diagnosed with Eosinophilic Esophagitis (EE).  Symptoms often flare for EE during late summer early fall and the majority of symptoms do resemble Celiac.

 

You should start with the non-evasive testing..

such as a stool check for parasites

blood test for Celiac (already mentioned possible low IGA issues with testing)

and she will probably end up needing an endoscopy with biopsy for full diagnoses.