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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Finding A Doctor That Specializes
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3 posts in this topic

Hello!

We took our children off of gluten in October 2012. My daughter was diagnosed with ADHD and Sensory Processing Disorder and we wanted to try diet changes before medicating her. After taking her off of gluten and dairy a lot of other symptoms that we thought were unrelated started to clear up. Having BM accidents in her pants, bloated belly, ear infections, bladder infections....the list goes on and on. Many of her neurologic symptoms have cleared as well! My son has always had a lot of food allergies and he also does really well on a gluten and dairy free diet.

 

I was diagnosed last month with Celiac Disease. Now I really want to have my children tested (via endoscopy/biopsy) to get an official diagnoses. I think it will be easier in school and as they get older I'm hoping they will be more likely to stay away from gluten.

 

My first question is: My children are 6 and 2, are they to young for an endoscopy with biopsy? Is it dangerous when they are that young??

 

and also: How do I go about finding a Pediatric GI doctor that specializes in Celiac Disease? I live in West Michigan and have access to a lot of hospitals in and around Grand Rapids.

 

The doctor that diagnosed me really didn't know anything about Celiac, I only got my diagnoses because I requested the testing. I really want someone who knows their stuff when they are dealing with my precious children!!

 

Thank you in advance!!

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None of the tests will be useful if the kids are not eating gluten.  The amount of time you have to eat it before testing varies.  My doctor told me 6 months.  Even then, testing can be difficult, especially in young children.  The tests themselves are not difficult - both my boys actually had a great time when they went in for their endoscopies - it is just difficult to get accurate results.

 

To find a doctor, I would search in your area for a Celiac Support Group and ask their advice.  A local group will know more about the local doctors.  

 

With your history and their response to the diet, it seems clear that they have an issue with gluten.  I understand your desire to get a formal diagnosis.  Just keep in mind that a negative test does not mean they don't have it . . . it could confuse things more.

 

Good luck to you -

 

cara

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Thank you so much!! I haven't been able to find a support group in our area. The closest doctor's that specialize in celiac disease that I can find are in Chicago. That really isn't that far from us but it would be easier to have someone in the area.

 

I was thinking I would have to put my kids back on gluten and I was hoping I could do it over the summer since they are so affected by it. I just wish the tests were more accurate, it would make life a lot easier!

None of the tests will be useful if the kids are not eating gluten.  The amount of time you have to eat it before testing varies.  My doctor told me 6 months.  Even then, testing can be difficult, especially in young children.  The tests themselves are not difficult - both my boys actually had a great time when they went in for their endoscopies - it is just difficult to get accurate results.

 

To find a doctor, I would search in your area for a Celiac Support Group and ask their advice.  A local group will know more about the local doctors.  

 

With your history and their response to the diet, it seems clear that they have an issue with gluten.  I understand your desire to get a formal diagnosis.  Just keep in mind that a negative test does not mean they don't have it . . . it could confuse things more.

 

Good luck to you -

 

cara

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