Son Having Symptons Again

[cs789]

Hi! My 6 year old son is having symptoms again. He was diagnosed with Celiac a year ago in November. We have been on a strict gluten free diet. Our 6 month blood work said he was doing great. He is actually amazing how disciplined he is with his diet. No real changes in his bm's.

So for the past few months he is just exhausted when he comes home from school. He gets so upset about everything. He wakes up at 5:30 and can't go back to sleep. He still eats constantly. He occasionally acts like he has ADD. So I called the GI doctor and the nurse said he is having celiac symptoms so we need to do some blood work to check how we are doing on the diet (TTG). So I called the lab and the doctor only ordered the TTG. I have a call into the doctor but I want to figure out what to ask and how to ask. Here is my dilemma.

I want the doctor to do additional blood work to make sure he is absorbing all his vitamins, does he have low iron, do we need to do endocrinology blood work. I only want him to have to be stuck with the needle once. It is so traumatic. What if the TTG blood work comes back fine? Then where do I go??

THANKS

[Ursa Major]

Do you give your son dairy and/or soy? Both of those can also cause blunted villi, and symptoms similar to celiac disease. So can other things. Rice and eggs will give me symptoms that appear to be celiac disease symptoms, but are not.

You may have to look into other intolerances on top of a gluten intolerance.

[cs789]

Do you give your son dairy and/or soy? Both of those can also cause blunted villi, and symptoms similar to celiac disease. So can other things. Rice and eggs will give me symptoms that appear to be celiac disease symptoms, but are not.

You may have to look into other intolerances on top of a gluten intolerance.

He is pretty much dairy free. But he does drink soy milk. He always has. Should I just take it out of his diet to test or is there a another way to test?

THANKS

[Ursa Major]

He is pretty much dairy free. But he does drink soy milk. He always has. Should I just take it out of his diet to test or is there a another way to test?

THANKS

Well, the easiest and cheapest way to test that is to stop the soy. And make him 100% dairy free, and then wait to see if he improves.

If he does, you can see which one of those is the culprit (probably both I suspect) by trying them one at a time a couple of weeks apart, to see if he will react.

If you feel he needs some kind of milk (which in reality nobody does, but it is nice on cereal), try rice milk (not rice dream), some brands taste really nice. Or almond milk is another option.

[crittermom]

I want the doctor to do additional blood work to make sure he is absorbing all his vitamins, does he have low iron, do we need to do endocrinology blood work. I only want him to have to be stuck with the needle once. It is so traumatic. What if the TTG blood work comes back fine? Then where do I go??

THANKS

[celiacgirls]

You might want to see what is happening at school to make sure there isn't some gluten exposure there. I had lunch with my 9 year old daughter last year and discovered her friends were handling her food while they were eating pizza. I'm not sure if that would be enough gluten to show up on a blood test, but it is enough for her to have symptoms. Then there's always the possibility of art supplies, soap, etc. having gluten.

[Nathan's mom]

Thyroid and low iron stores can do this also. I have had the same frustration with my son (4) not getting better sooner as I would like. He eats constantly at times, is still hyper/strange behavior, etc. and tired. He was low on certain vitamins showing some malabsorption continuing. His tTG was in a good range though. Why it is taking him longer to heal I don't know.

It is hard when they are young to have them get bloodwork. Ask and get all you can!!!! Tell them what you want don't ask.

Good luck!!

[happygirl]

Open Original Shared Link

that may provide as a reference for testing for other things.