Symptoms In My 9 Year Old

[amsuka]

Hi everyone, I am new here. My husband is celiac, and gluten free for over a year. His Mum, 2 sisters, and 3(so far) nieces are also celiac. I am gluten sensitive, and observe a gluten free diet also. That's the back-story, now here is my concern: my 9 year old daughtter Charlotte.

I have been wondering for a while if she might be, but back in the spring she had the blood test done which came back negative. I let it go. Some issues have been cropping up lately. - a rash on her arms, upper legs and face, which seems to ebb and flow.

-moodiness, especially a tendency to get weepy( and this in a child who used to have the sunniest disposition around)

-puffy face. This is an odd one. I was looking at some pictures taken at the cottage 2 summers ago, and it is like looking at a different child. She is slim, and has only gained weight in accordance with growing taller, but her face is SO round and pale!

I am taking her to the doctor to be re-tested.

Help! Thoughts??

Thank you!!

Amsuka

[debmom]

Your description of your daughter sounds just like mine-- moodiness, round, pale face, etc. She is definitely gluten sensitive, but blood work did not show celiac disease. she had terrible abdominal pain, however, for seven months that sent us to the ER 7 times until she was finally hospitalized-- with no conclusive diagnosis. Once we started the gluten free diet on a hunch, her pain resolved and has been gone for the past eight months. The moodiness is almost completely gone, and she has gotten some color in her face. From your description, she could be my daughter. I would not rely too much on the blood work.

[Ursa Major]

With your husband having celiac disease, and you being gluten sensitive, it would surprise me if your daughter's symptoms wouldn't be caused by a gluten intolerance. Those celiac disease blood tests are notoriously unreliable, I wouldn't put too much confidence in them.

My daughter's blood work was negative, too, but I had her tested with Open Original Shared Link, and she tested positive with them. She actually has a fairly high malabsorption score, and definitely needs to be off gluten.

If you can afford testing with Enterolab, that is the way to go. And because their tests will still be accurate up to a year of being gluten-free, you can start the diet while waiting for the testing kit to arrive. It sure sounds like your daughter should be off gluten as soon as possible.

[amsuka]

Your description of your daughter sounds just like mine-

I agree about the blood work. I guess I just wanted to be more sure before eliminating gluten, but I expect that is the answer. Thanks for responding- It is awful not knowing what is going on with your child...

[amsuka]

With your husband having celiac disease, and you being gluten sensitive, it would surprise me if your daughter's symptoms wouldn't be caused by a gluten intolerance. Those celiac disease blood tests are notoriously unreliable, I wouldn't put too much confidence in them.

I know, and I agree. I suppose there were "symptoms" that I simply didn't put in that category until now. Thanks for your suggestions! I will certainly look into Enterolab, and ask my doctor about it when I take my daughter in. Thanks!

[Ursa Major]

Just beware that most doctors have either never heard of Enterolab, or will discredit it. New discoveries usually take a while before they are accepted.