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megsybeth

Miscellaneous Labs For My 4Yo

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I'm feeling a bit blue this morning for myself and my little boy. I can't seem to focus on my work at all. This is part rant and pity party and part a question about his labs over the years and seeking any input. To give a summary of our situation, I'm sure my 4yo has celiac (small stature, attention and motor problems, lethargy, anemia, and now horrendous daily diarrhea directly related to eating gluten-one more week until biopsy). I have celiac which just got diagnosed.

My son hasn't had a positive celiac blood test. Some people on the board said the test recently given wasn't complete but he's going to be gluten-free either way and I'm 95% sure that will help. He's getting the endo in a week. But I wanted to go back over some of his labs just to see about his other celiac tests. Realized the first round at age 1.5 was actually just a stool test for fats (grrr).

Anyway, some things have shown up over the years:

-Extra protein in the urine

-Anemia (I know that can be a celiac related issue)

-High esinophils

-Low neutrophils

-Low creatinine

-High BUN/Creatinine ratio

I just feel like the multiple doctors we've seen have looked at this and sort of thought, well he's not in distress or maybe he just had a cold. But my son is so tiny and I just feel like someone should have cared. For example low neutrophils can mean a severe autoimmune issue like leukemia, it can also be related to having the flu. Why didn't his doctor test again to make sure levels evened out? I just feel so sad and angry for my little boy, like it would take both of us being passed out on a gurney to get any doctor to think twice.

Any input would be appreciated.

Thanks,

Megan

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