We are frustrated. What should I be asking of his doctors?

Question

I have a few questions about my son and spouse who are undiagnosed.

A little background info:
At 17.5 months my son had a scope and celiac blood test. His scope came back with swelling in the stomach and duodenum consistent with early celiac disease or multiple food protein intolerances. He was diagnosed with Food protein induced enterocolitis syndrome (couldn’t eat dairy, soy, corn or oats till almost age 3).

His celiac blood test came back as IGG 11 and IGA 6. They said normal for IGG is under 10 but his test was inconclusive due to age (and he’d only been consuming food for 6 weeks – a whole other story).

At 2.5 they redid the blood test. This time IGG 146 and IGA 6. No diagnosis, GI said will scope again if the endo he sees says his growth issue is not growth hormone related.

My spouse had the blood test done last week and his is IGG 106 and IGA 0.5. Our doctor said he doesn’t know what it means.

I have no idea how to proceed. My son is now 3yrs and 2 months. He’s small, his bone age is 18 months. He has stomach aches and chronic constipation. He takes an adult dosage of laxative daily. He’s had x-rays due to impacted stool. He doesn’t sleep through the night.

We are frustrated. What should I be asking of his doctors?

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Stacey 3 years 2 Answers 380 views 0

Answers ( 2 )

  1. A biopsy is the best diagnostic tool. Blood tests are often inconclusive.\nWe had our youngest scoped and biopsied to get the diagnosis. We chose not to proceed down that road with our others because having an autoimmune disease on your health record is a preexisting condition. We just treated them as if they had Celiacs. We also have sought the help of a functional practitioner to hone in on other allergies.

  2. My 11 year old son has the bone age of a 7 year old. After pushing and pushing, he finally got a biopsy and was diagnosed with celiac disease. He’s been gluten free for 2 years along with myself, and he’s grown more than ever. Good luck, and I’m sending the best of wishes to your son and family.

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