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What Do I Do Next?

Posted by alfgarrie, 17 January 2014 · 955 views

Ok, so this is all new to me. I have never done a blog, or dealt w/ Celiac til just recently. Never have I worried about the food I have put in my body, and didn't give much thought to what my kids had either. My middle child showed signs of having an allergy. We took him and had him tested, and the only thing that showed up was a mild wheat allergy. I talked to the doctors and they said don't worry if it's not causing too many problems. I didn't worry until it really seemed like he was having a lot of problems using the bathroom. I then started researching gluten free diets, and was going to give it a whirl. While I was looking on websites I came across Celiac disease, and decided I better get him tested since he did have some symptoms. The doctor really didn't seem like I should be getting him tested, but I urged them to do so anyways. About a week later I get the call his results showed one test out of the 4 on the Celiac panel came back positive, and to put him on a gluten-free diet. That's the only answer I got. They didn't explain much to me at all. I decided to get my oldest son tested too just to be sure. Sure enough his came back positive on only one of the tests too.

I put both of my sons on a gluten-free diet, and did more research myself since all the doctors said was just put them on a gluten-free diet. I haven't seen much change in my middle child. It doesn't hurt him as bad when he goes to the bathroom, but his stools are still not normal. I have heard from other friends who have spoken to a doctor that they should have a biopsy. I am trying to get the doctors here to do a biopsy, and they are stalling. I am getting very frustrated. I just want to make sure they are getting the care they deserve and need. I want to rule out any other possibilities as in Crohns or maybe something else. I only know that my middle child tested positive on his IgG and it was 56. I had to ask them, because they didn't explain. I still don't know what my other son's tested positive for. I just feel I am getting the runaround and really need some guidance. I have been told (not by doctors) to stop dairy. I don't want to do anything until I can hopefully get the biopsy, and get a for sure answer. I am kind of stuck right now, and don't know how to help them. I feel the doctors should be doing more to help. I would appreciate any suggestions. I also have another little baby, and wondering when is the best time to get her tested. She's 11 months old, so I didn't know when is too early. Thanks in advance.

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You might want to make a new topic on the forum. Blogs are more like a place to write about experiences. You will get more answers on the Forum section. The doctors may be stalling on the endoscopy because, if the kids are gluten free, they should be healing and the endo would be negative. Check out this website for some helpful info you can show to doctors. http://www.cureceliacdisease.org
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I hope you are not feeling overwhelmed.  It sounds like you are making your way.  You are doing just what you should be for your children.  The doctors sound like they are not very helpful.  It takes a while to learn the diet and to heal from celiac.  All the best to you.

 

D

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