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I May Be Joining You Soon...

HeatherG

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HeatherG Rookie
HeatherG
Posted

Hi, I may be joining you all soon. My daughter will be 7 years old in July. She has had stomach problems nearly her whole life. She had terrible constipation (10 -14 days between BMs) often not able to go at all without an enema even when she was a 100% breastfed child. We started treating it with month after month of laxatives that really didn't work. 2 to 3 times the adult dose and it just barely kept us from having to give her enemas. She had constant respiratory issues and sinus infections. When she was 18 months old my ped decided to go ahead and run a celiac panel - basicaly he was running out of ideas and GI guys told me I just needed to punish her when she wouldn't poop (nice). Here are the results from 18 months of age:

IgG was 89 which is hugely high

IgA was 10 which is normal

tTG IgA was 1 - again very normal

From this they told me she didn't have celiac and that the IgG didn't mean anything.

Fast forward 5 years - the symptoms have gotten no better. She is in constant pain. She's being diagnosed with reflux and a slow gut. Nothing seems to help. No one has any solution but constant laxatives which just makes her sick and unless I give her lots of exlax it doesn't help anyway. If I give her enough laxatives to help the cramping is so bad she can't get off the couch. Her reflux is bad too. I know it's all connected but I'm just at my wits end. She can't eat without pain so she often doesn't eat at all. So I started looking into Celiac again. It just didn't make sense that the high anti-gliadin IgG didn't mean anything. I found Dr. Fasano's website that said the other tests may not show positive for a child under the age of 2 so I called them up. They agreed that those blood tests are very suspicious so they asked me to have our ped run the tests again and get a total IgA. So we did that on Friday and here we wait.

Part of me is worried she has celiac and the other part of me is worried that they test will be negative and we'll be no closer to finding a solution to her pain.

Thanks for letting me talk while I wait in a panic.

Heather

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lonewolf Collaborator
lonewolf
Posted

Welcome! It must be hard to see your daughter go through so much. I hope we can be of help to you. Are you planning to try the gluten-free diet even if the tests come back negative? That's what I did with my son, at the advice of the pediatrician. Let us know how we can help!

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HeatherG Rookie
HeatherG
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Posted
Welcome! It must be hard to see your daughter go through so much. I hope we can be of help to you. Are you planning to try the gluten-free diet even if the tests come back negative? That's what I did with my son, at the advice of the pediatrician. Let us know how we can help!

Thanks,

I don't know which would be worse - to know she's on a restrictive diet for the rest of her life or to not know whats wrong with her. I guess I'd just like an answer. I'm tired of seeing her feel so yucky.

Thanks -

Heather

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flagbabyds Collaborator
flagbabyds
Posted

Welcome!

I hope that you do try the diet anyway after you get the blood tests back. And if the blood is positive, know that you do not necesarialy need to do the biopsy if you don't want her to go through it.

I can help you rdaughter with the restricted diet, i have been on the gluten-free diet for 15 years now, and it has gotten a lot better. i think that you should try the diet because it could make her feel so much better even if she has a neg test. because some people have neg blood tests still feel better on the diet, and feeling better is much better than having a restricitve diet, you can PM me whenever you want, but just know i might not get back right away becasue i have to go to school, and have 4 weeks more, so finals are coming soon, but i will try to get back as soon as possible.

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TCA Contributor
TCA
Posted

You might want to considera diet trial no matter what the tests say because sometimes you can get a false negative. If you need help starting the diet, feel free to PM me. My son still eats hot dogs, pizza, chicken fingers, cookies, cupcakes, etc. They're just gluten-free. I do hope she feels better soon.

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