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Advice On Testing Or Not

Kristie

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Kristie Newbie
Kristie
Posted

My sister was diagnosed with Celiac a couple of years ago. She had been sick for over fifteen years (started having seizures in highschool) and was constantly misdiagnosed. She is currently on disability due to the effects of the disease at age 30. Last year our mother and paternal grandmother were diagnosed as gluten intollerant (both sides of the family).

My oldest son has had learning problems since he started school and the doctor wanted him to be tested. His tests came back negative but of course, as I was waiting for the results I was researching like crazy.

So this is the part I need help with. As I was looking at the symptoms of celiac I realized that my youngest child, age five seems to fit into a lot of these catagories. This is the child that should be at the least risk for the disease because she was breastfed for three and a half years.

1. pale stools (always thought that was strange)

2. gassy (puts her brothers to shame)

3. sleepy (recently started taking lots of naps; been blaming it on a growth spurt)

4. weight (just about everything I read says underweight, I don't see that, but this child eats constantly--I don't think it's the normal she's a big eater; it's becoming a real worry, but she doesn't gain weight--she's thin in a family that's overweight)

5. She has become really cranky and winy (blaming that on the fact that I started traveling)

None of these really bothered me (with the exception of overeating) until I read the celiac symptoms. With the family history and knowing what my sister has had to go through I believe that I should get her tested. But I can't imagine her allowing them to take blood. I'm not sure that I want to put her through that. My twelve year old did fine but she's only five. Is there another test we can do. I've thought about changing the diet and see if there is any change but I'm not sure how long we need to wait or what to look for. It also seems to be extremely expensive. Any advice? What tests did you use to have your child diagnosed?

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mommida Enthusiast
mommida
Posted

The first part of testing is a FULL Celiac panel. My daughter did very well having blood drawn. She must have endured a lot of pain from having Celiac in general, so a small needle poke was nothing major to her.

With the symptoms you have described, I would try the gluten free diet even if the test results came back negative.

Laura

TCA Contributor
TCA
Posted

My 3 year old has had sooo many tests trying to find what was wrong with him before we found Celiac. He HATES needles, but gets over the trauma of getting stuck quickly. I don't think we give kids enough credit with how resiliant they can be. It might cause a few tears to get the blood draw, but I bet some ice cream would dry them quickly. It took me and 3 nurses to hold my son down for his last biopsy IV, but once it was over he never thought of it again. Good luck!

teankerbell Apprentice
teankerbell
Posted

Do the stool test from Entrolab. You can order it yourself online. Chances are your daughter has it since it is genetically passed. Have you been tested?

  • 1 month later...
Den Newbie
Den
Posted

I would have the whole family tested. This is a hereditary (sp?) disease. The celiac blood panel is the first test. If your daughter doesn't like needles (most dont) put some Oragel (yep!) on the crook of both arms (that way you're covered). It really does help !

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