My Daughter Had Her Celiac Panel Today!

[Electra]

Well I was not willing to barter on this one, so I flat out LIED!! I told the Pediatrician that I had just been diagnosed with Celiac and that my daughters rash is consistant and that she had other symptoms and needed to be tested. He actually wanted to jump right to the bowel biopsy but I assured him that with the skin reaction, and a positive blood test she would not need the bowel biopsy, especially since her symptoms go away when we omit the gluten. He admitted that I probably know way more about the disease then he did and that he didn't think she could have it because she wasn't malnourished. I got out all my paperwork that stated that the symptoms do not always show up as malnourishment but in other ways such as skin rashes, moodiness, and other things, so he agreed to the test and he agreed to set up an appt with a gastroentologist that specializes in Celiac. Even if it comes back negative he said that I should probably still take her to make sure they rule it out completely!! We should get the results in about a week, so I'm going to be a complete mess until then. Even if the test says she does not have it. I KNOW that our symptoms together are not a cooincidence and I feel like I stumbled upon this Disease by the grace of God and not by chance!! It explains everything!! Wish us luck (whatever that may be)!!

[Guest nini]

I wish these Dr.s would get over the idea that they can "rule it out completely" by testing... they can't. They can only confirm it if it's positive, but they can never ever rule it out.

Positive dietary response is still the best indicator.

I'm glad you insisted on the test, and go through with the GI testing if you feel it's necessary, but just remember that blood tests and biopsies can only confirm the dx. If she is only gluten intolerant or pre celiac and there isn't enough damage YET, standard medical protocol would be to have her continue eating gluten until she does have enough damage to test positive. I'd rather err on the side of caution and go with positive dietary response. That's what we did with my daughter. I did take her to the Ped. GI, but he was next to useless. All of her symptoms completely resolved when we took gluten out of her diet, nothing else, just gluten, so obviously that was the problem. It was good enough for me, good enough for her pediatrician, and good enough to convince my husband.

Good luck with it all, I know it's confusing especially when you are dealing with doubting family members and Dr.s that are still operating on outdated information, ie: still thinking that Celiac only presents in malnourishment.