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So Discouraged

MaryanneQ

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MaryanneQ Apprentice
MaryanneQ
Posted

I am so discouraged at this point.

My son has had many difficulties all of his life (Nick is 6.5 right now). He has always been painfully small for his age weighing in at 29.5 lbs and 40" tall right now. We were seeing an endocrinologist for some time who ran some tests for Celiac and they came back positive. (ttg, iga, igg) Actually the TTG was positive and one of the other two as well, the other one was negative. We were referred to a Pediatric Gastroenterologist in the same hospital(Children's Hospital) - He looked over everything and scheduled an intestional biposy for the following month, fully expecting it would be positive.

He is VERY familiar with Celiac stating, in fact the same day as my son's biopsy they did 4 other children, all who were positve. My son was negative. The Dr was puzzled. He's convinved he didn't miss abnything because he was very thorough with his biopsy.

In any case - he ran a few more tests , one of them being a repeat Celiac panel(TTg, Iga, IGG again) and this time he routed it through some lab in Buffalo (Names escaped me - starts with an I) that runs these tests regularly and the results would be more sensitive etc. Anyway - these tests came back perfectly normal ?!?!?!? So we decided to do the trial run of the diet anyway to see if we saw any chamges in growth.

December starts month 7 on the diet and NOTHING. No growth spurts, nothing is different. He never had the distended belly that you sometimes see, never had the bowel problems, had no concrete symptoms except for the lack of growth.

I'm just not sure what is going on. We go for our follow up after x-mas and I know we will do a gluten challenge and repeat all tests. I am so disappointed. I thought this was it. I et myself up for such a hard fall, putting so much HOPE into this diet. Everything seemed to fit. My son has horrible teeth, attention and learning issues, speech issues. Everything I read seemed liek this wodul be THE THING that wodul unlock everything and make life easier for him and now it looks like this just isn't it.

Has anybody else has flip flopping test results like this?

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dbuhl79 Contributor
dbuhl79
Posted

Maryanne,

I can't speak for the flipflopping test results, but wanted to offer a word some moral support. I certainly wish you the best of luck in discovering what ever may be the specific cause for your son's slow growth and other issues. It does seem that Celiac Disease would fit into this. I find it slightly odd and would question the blood tests having such varying results. Did they give you specific numbers ? As they are a "range" in which is considered negative or positive. Keep us posted on what you discover.

Also keep in mind, that a lot of people seem to mention on here an extended period of time before they saw results with a Gluten Free Diet. Perhaps 7 months is not quite enough yet for your son. I think this disease is a bit tough to determine on reactions with children. Good luck!

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