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Anxious For Diagnosis

Capegin

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Capegin Rookie
Capegin
Posted

Hello,

My DD (15 months) had a blood test for Celiac on Monday, and the pediatric GI seemed to think there's a good likelyhood it will be positive given her symptoms. While we wait for results, I'm worried about three things:

1. It will be positive. I'm worried I'll get overwhelmed or confused by all of the ingredients to avoid and I'll make mistakes. I'm worried her extreme irtitability won't improve and I will continue to struggle to enjoy her sometimes. I'm worried about the guilt I feel about that.

2. It will be negative. Then we are back at square one, after waiting, allergy testing, experimenting with cutting out Lactose, etc.

3. I'm worried about the CF test the GI also ordered. Neither my husband nor I are carriers, but the doctor explained there can be mutations. I know it is very rare, but I'm terrified.

Overall I'm just worried and a total mess right now.

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MitziG Enthusiast
MitziG
Posted

First, breathe! Stop worrying about what is beyond your control. If she tests positive for celiac, you will do what the rest of us have done- you will learn! Yes, there will be mistakes and setbacks, in the beginning, it is overwhelming. But after 6 mos or so it will be second nature.

Now, if the test is negative, you are NOT at square one. Chances are still good that she is non-celiac gluten intolerant, or just too little to show enough antibodies yet. So, if that is the case, embark on a strict gluten-free diet for a few months anyway. It can take months to see improvement in some people, so don't give up if you don't see immediate results.

It may also be in her interest to do stool testing through enterolabs. While it is controversial, a lot of people have found the answers they needed to resolve their heealth issues that way. If the celiac test is negative, it can point you in the right direction for identifying problem foods.

As for CF....with neither of you being carriers, it is very remote that is what you are looking at. Don't assume the worst, it usually isn't.

The fact is, gluten can mess you up bad. You can feel like you are dying, and look like it too. It makes you crazy, depressed and irritable. It fogs your brain. The list goes on and on. I'd think it is a safe gamble that you will get to the bottom of this by dealing with food issues, but it could take some time. Stick around here, you will get lots of encouragement and learn a lot.

Sesara Rookie
Sesara
Posted

We are in the same boat as you...Tuesday, we had the blood work done on my 21 month old, and they have already scheduled a biopsy and seem fairly confident that we are probably getting a Celiac's diagnosis out of this. We actually already had to do a CF test, and I was terrified by it - it's a normal reaction, and I can't even begin to detail me relief when it was negative - I would take a Celiac's diagnosis over a CF diagnosis any day of the week.

We too are just beginning to navigate the waters of gluten free, and it is confusing - I look at a package and wonder - does maltodexrin have gluten in there somewhere, what if the soy sauce they used in this beef jerky has gluten, where on earth can we take him to eat that he will be safe as he grows up, etc. But I can already tell that this forum is a wonderful resource from parents who have BTDT and will be able to help answer those sorts of questions.

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