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    Do you have questions about celiac disease or the gluten-free diet?

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Hi. I am new to this forum. My son is 2 years old and has Down syndrome and had recent blood work for celiac that came back "inconclusive" with the following labs (which I don't understand)

Immunoglobulin A: 183 (range 14-122)

Gliadin Antibody IgG: 38.4 (range 0-24.9)

Gliadin Antibody IgA: 51.1 (range 0-24.9)

Tissue Transglutaminase Ab, IgA: 0.9 (negative is less than 7.0)

Peds and GI are recommending a biopsy which is scheduled for this Wednesday. It seems as though 3 of his 4 labs are elevated, so why does he need a biopsy? Also, is it worth trying the enterolab for stool evaluation? His symptoms are increase fussiness, horrible reflux (on 2 medications for this), no diarrhea but pooping 3 to 4 times a day, increase hunger, but had a little bit of weight loss, sleeping poorly. I know kids with Down syndrome can be at increased risk for celiac.

I have been trying to read as much as I can here today but wanted to get some feedback ASAP because they scheduled his biopsy for this Wed. and I want to be sure I am doing the right thing with putting him under general anesthetic. Thank you in advance for any help you can offer!

Lexy

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they are calling for the biopsy because the standard diagnosis of celiac requires a biopsy to confirm villi flattening in the intestines for the diagonsis. that's just standard 'procedure'. you can, of course, talk to the doctor about diagnosing him alternatively, using the elevated blood tests and seeing if he responds positively on the gluten-free diet. many doctors do not accept the enterolab tests, because they are not yet peer-reviewed and mainstreamed.

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I agree with her comments but had an additional thought of my own, I used Enterolab and although it is true that they are not accepted by the mainstream medical professionals, it may give you the peace of mind about how best to treat your child. If the biopsy comes back fine then what.... you will still be left with what to do next. If it comes back as Celiac then you are left with no other choice then to start him on a gluten-free diet.

Enterolab is great for a gluten sensitive diagnosis such as mine. When the biopsy says no Celiac then people still need to find out what they do have and then manage their health. I have found that Enterolab diagnosed me as GLUTEN-SENSITIVE and CASEIN SENSITIVE.

I only chose them for two reasons: one, they were non-invasive and two my nutritionist thought that I was gluten-sensitive and I wanted some lab work to confirm his medical opinion.

Best Wishes to you and your son. He is most blest to have a mother that makes good choices for his medical future. Hopefully he will be on his way to a much improved medical status!

Tammy

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