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Finding A Doctor That Specializes


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#1 DutchGirl

 
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Posted 25 March 2013 - 08:07 AM

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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#2 Cara in Boston

 
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Posted 25 March 2013 - 09:20 AM

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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#3 DutchGirl

 
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Posted 25 March 2013 - 09:32 AM

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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