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Hello. My 13 year old daughter was diagnosed with Celiac from a blood test 2 weeks ago. We are going to see the pediatric gastro doctor this coming Monday. I am completely new to this and overwhelmed by all the info on the internet. What questions should I ask the doctor and what information should I get? Should she have further tests done? She has started the gluten free diet even though I have read she should wait until she sees the specialist but I was initially told we wouldn't get an appointment for 6 to 8 months. She also is in such pain so we went ahead and started the diet. She has somewhat improved already! Any suggestions are greatly appreciated.

Thanks,

Mindy

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First of all, blood test alone can't diagnose celiac disease. It could have been an unreliable test. To check for sure, she will have to have an endoscopy done to biopsy her small intestine. DO NOT start the gluten free diet yet. It can make the biopsy inaccurate. Your pediatric gastro will tell you this as well when you go in.

I have two people in my home who have celiac disease. My husband was diagnosed a year and a half ago and my 9 yr old son was diagnosed a month ago. My husband got really sick when they found it. He thought is symptoms were normal.... Until he lost 40 lbs. We checked my son because celiac disease is genetic and sure enough he had it to. My husband has apparently had it for years and my son has had it for about two or three according to the doctor.

It is a life changing event. But nothing to be frightened of ( unless you choose not to follow the diet) . It is all about reading labels. Google is our new best friend! My son Aja's handled it well, he has seen his dad follow the diet for sometime now so he is use to it. We order a lot of things without the bread and we find safe goodies that he can have. He takes a multivitamin everyday. Also beware of Claus, glues, stps, and envelopes as well as soaps and shampoos! If you have any questions feel free to ask. I am no expert but with to Celiacs in the house. I have to be well informed..... I am the minority after all!!! :)

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I wouldn't think it would take that long to get an appointment! This can be quite serious after all.

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There is no need to worry about stamps and envelopes. That is one of those internet myths that will not die. Most glues are fine, also. A 13yr old should be able to be careful with glue but all Elmers are gluten-free .

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First of all, blood test alone can't diagnose celiac disease. It could have been an unreliable test. To check for sure, she will have to have an endoscopy done to biopsy her small intestine.

This isn't exactly true any more. They are looking now at 5 criteria for dx. and a biopsy may not be needed.

That said, I agree with not starting the gluten free diet until you see the GI, it's only a few days just to be sure they don't want to do the endoscopy.

Hang in there!

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StephanieL

Please could you list or link to the 5 diagnostic criteria? My doctors only recognize blood test and biopsy and I need all the help I can get to convince them!

Mindy Sue

Good luck with a diagnosis for your daughter

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The pediatrician diagnosed my daughter without the endoscopy. Technically I think her chart reads "probable Celiac". She improved so drastically when we did a food trial, the doctor was willing to work with that. The ped. GI was 2 hours away and my daughter didn't want to go back to eating the gluten for the challenge. The doctor even told me, what was the point, weather the test was preformed or not, she needed to be gluten free. The test wasn't going to change the outcome. The diet worked stick with it. If at some point in the future, my daughter wants to be tested, she could do the endoscopy then.

I agreed, I wasn't willing to put a child who had been sick and miserable for so long, through more misery, just to get an official test result! JMO

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StephanieL

Please could you list or link to the 5 diagnostic criteria? My doctors only recognize blood test and biopsy and I need all the help I can get to convince them!

Hi MindySue,

Here is a link to the abstract of the publication (not sure where to find it without paying but I am sure it's available I just did a quick search as the kids are being crazy right now). The last line lists the criteria they are suggesting. Biopsy is listed but if you have the other 4, he (who is THE Celiac Dr. here in the US) says that's good enough!

Dr. Fassano's 5 Criteria

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Great link!

Thanks Stephanie :)

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