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My daughter has celiac disease, any advice?

Posted by on Aug. 31, 2012 at 8:37 AM
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Yesterday I got a phone call from my daughter's GI to inform me that her blood work came in. Her GI wanted to go over the results with me. She let me know that the same levels that were elevated in late December had gone down but were still higher than what they would want. The blood panal that was done was just for celiac disease, and it even tested her genetic predisposition for the disease. Well it turns out that her genetic disposition is that she is extremely likely to develope the classic symptoms in her lifetime.

So her GI consulted with the doctor that had done her biopsy back in March to go over the results of the bloodwork in conjuntion with the lab results from her biopsy. So that is when they confirmed that with the biopsy having normal and abnormal villi which led to it being inclonclusive, that now it is conclusive that she does have it and that is what has been causing her chronic constipation for the past year and a half.

 

I know that this is not life threatening like some things are, but even so my heart just sank for her because now she is going to have to give up a lot of her favorite foods. It helps that we had to put her on a glueten free trial for 3 months so she pretty much knows what to expect, and she remembers that she felt a lot better during the trial and so this I feel will help her with the dietary changes that will be made for her. I know now that I am going to have to find a way to get educated on this so that I can explain to teachers and care givers why she can't eat certain foods and what it will do to her.

Any advice is greatly appreciated. Also I was advised to have her older brother and sister tested and to get myself and my husband tested because of how high her genetic predisposition is.

by on Aug. 31, 2012 at 8:37 AM
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Sagely
by on Sep. 8, 2012 at 9:07 AM

My advice: don't make a big deal of it.  I mean, make a big enough deal that "cheating" is unacceptable, but don't make it out to be devastating.


There are sooooo many substitutions and naturally gluten-free foods out there, she can likely still have her favorite foods.  They just might have to be made with a different flour or whatever.


A year from now, it'll be easy.  :-)

Mystic24281
by New Member on Sep. 25, 2012 at 9:43 AM

thank you. I recently made my first loaf of GF bread and she absolutly loved it. We also to her to the natrual grocery store here in town and she was so happy to see the GF selection. The only downside is the price of GF items. We are working on it and so far taking baby steps is what is working best for her.

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