16 Month Old, Negative Blood Test

[Briana]

Hi all! I am new to this celiac thing, as it was just recently brought to my attention that my daughter (16 months) may have this disease. She went through all the blood work, which came back negative - she was also tested for anemia which was also negative. We are still waiting on the results of her stool samples, which I am kind of unsure what they are testing for exactly, but her ped says if it comes back negative she will refer me to a gastroenterologist. Here's the thing, and maybe it's mother's intuition, but I really still think she might have Celiac or gluten sensitivity at the least. As a baby she was always in the 50th percentile, until she hit 6 months when she dropped to the 25th, then the 5th at 9 months - these drops all seemed to occur once solids were introduced. She has had issues with her weight ever since although her height is steady. She also has always had loose stools, which range in every poo color imaginable and always seem to have bits of undigested food in them - and they stink to high heaven! Further, she is quite irritable and a terrible sleeper. I am so worried that she isn't getting the nutrition she needs. Here is my question: what is the harm in starting her on a gluten free diet? I know she needs to be eating gluten to be diagnosed, but I don't want to wait any longer for a referal to a specialist nor harm her health any longer if I can help it. Is there some benefit to having an official diagnosis by a physician? Thanks for any advice and support!

[Skylark]

The benefit to the official diagnosis is once she's in school. You can't get a 504 plan that forces the school to take her gluten-free diet seriously without the diagnosis. Some parents are lucky enough to have compassionate teachers that wouldn't dream of giving a celiac kid wheat, but others have to fight tooth and nail to keep their kids gluten-free.

[Briana]

I can certainly see how that would be a problem. Here's another question that maybe you can answer for me: what would be the harm in starting a gluten-free diet now to help her get to where she needs to be weight and health-wise, then trying later on down the road when she is stronger and older to get her diagnosed? I'm so worried that she will be developmentally compromised if she isn't getting the nutrition she needs...I'm just too afraid to wait any longer.

[mommida]

If you can continue with the testing, she needs to be on gluten.

Testing at this point will be to rule in or rule out several possiblities.

An endoscopy with biopsy...

Celiac

H. Ployri

congenital defect

parasites

eosinophilic esophagitus (or any other eosinophilic condition)

Having a brain fart here and can't remember some of possibilities....

Some allegy testing may be helpful.

If you get a clear diagnoses, hopefully you will eliminate doubts as to the proper treatment.

If you are right and it is Celiac, you will be able to set a baseline of recovery. To be able to make sure the gluten free diet is effective.

[Briana]

Thanks everyone for the responses! I appreciate all of the advice. I definitely want to get down to the bottom of things for my daughter's sake. I'm still debating on what to do but everything you guys said will certainly be taken into consideration

[nora-n]

What blood tests were done?

Maybe they only did the IgA tests, and with small children the total IgA is low so there is a false negative, or maybe they did the wrong tests?

Maybe just ask for a biopsy, since even with adults 20% have negative blood work.

nora

[Skylark]

I can certainly see how that would be a problem. Here's another question that maybe you can answer for me: what would be the harm in starting a gluten-free diet now to help her get to where she needs to be weight and health-wise, then trying later on down the road when she is stronger and older to get her diagnosed? I'm so worried that she will be developmentally compromised if she isn't getting the nutrition she needs...I'm just too afraid to wait any longer.

You can do that. The problem is that she will have to eat gluten for 2-3 months at some point down the road for a diagnosis. If you can't get a diagnosis now for whatever reason and suspect gluten intolerance, that is a reasonable thing to try.

[Briana]

What blood tests were done?

Maybe they only did the IgA tests, and with small children the total IgA is low so there is a false negative, or maybe they did the wrong tests?

Maybe just ask for a biopsy, since even with adults 20% have negative blood work.

nora

I really wish I knew what tests exactly were run. When the doctor called me it was really late on a Friday (like 7:00pm) so she was in a quick hurry to get off the phone. All I could squeeze out was that they tested for Celiac, checked her thyroid and for anemia, and all the common food allergies and everything came back normal. This was last week actually. Just today, she called and left me a message and said she had received Hailey's (my daughter's) stool results and everything there was normal as well - this I know she was testing for Giardia and bacteria...not sure if there was anything else measured. I think I will call tomorrow and see if they can mail me or at least tell me the exact tests performed. Oh yes, and also in the message her Dr gave me a couple of numbers to some pediatric gastroenterologists so I will be calling them first thing in the morning as well. Hopefully they will get her in soon!

[nora-n]

Antibodies are not so accurate with small children. That is because their immune system is not so developed yet.

So it is important to run several different tests so maybe one will be positive.

They have no special reference ranges for children, by the way.

I was thinking, this child is very young, and it would maybe be wise to wait for a month or two before doing some more blood tests, because the antibodies then maybe kick in. It might even be neccessary to repeat testing until they turn positive.

Or, do a biopsy, and if negative repeat it after some months.

There is even the pill cam but I think it is from 2 years up.

Also, blood tests for small children need to be interpreted differently, as it is the antigliadin test that usually turns positive first with children. In adults they usually test the ttg test.

Also, the total IgA is lowish in small children below 3 so IgA type tests (any IgA based tests) will get false negatives.

nora