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What Test To Have Done First?

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Posted 12 June 2014 - 02:14 AM

My son has been gluten free for 3 years. This was on the recommendation from an occupational therapist. His stomach improved immediately. He used to vomit quite a few times during the year (non viral), and the rash on his elbows and knees disappeared. Since that time I feel I have done a lot of research on celiac, and wish I knew to have him tested before ever going gluten free, but at the time I just didn't know.

Fast forward to this year. In January I started letting him have food at birthday parties and whenever they brought special snacks into school for birthdays, fun Fridays etc. he seemed to do well, so we started eating out once a week and letting him have whatever he wanted. Now in the past 2 weeks I started giving him gluten everyday. My husband and I decided to have him tested for celiac. Now I am trying to figure out which dr to go to. I read that the internal biopsy can be done as early as 2 weeks on a gluten challenge. Blood tests need a lot longer time on gluten.. And can easily give a false negative. But what about dh biopsies? He has active lesions on his elbows that have returned because of the gluten. Can he be tested now?

Where do you recommend I start. I have the name of a pediatric GI (who does a lot of work with celiac kids), do I see his pediatrician first for a blood test, or try seeing a dermatologist to have the rash diagnosed?

The rash looks like it's getting worse and I've been keeping an eye on his knees. I feel like it's only a matter of time before his knees break out too.
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Posted 12 June 2014 - 07:18 AM

The general rule for a dh biopsy is to have been actively eating gluten for 2 months --- same as for blood panel but with dh, we tend to test false neg. on the blood work 60% of the time. The biopsy for dh has to be taken from clear skin ADJACENT to a fresh lesion NOT ON IT. The patient can't have had oral or topical steroids for 2 months prior.


If the Ped has experience with celiac you might start there but has he had experience with celiacs presenting with dh???? It's a different ball game. If the Ped will do a endoscopy but again, those with dh tend to have patchier damage so he may miss it. And I wouldn't count on the 2 weeks rule. The study I read was a very small study group. The problem is, if tested & it comes up negative then docs shut the door on the possibility of celiac disease. 

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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.




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Posted 16 June 2014 - 03:09 AM

I don't understand if someone is intollerant to gluten shall he be forever ?

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Posted 16 June 2014 - 04:38 AM

I don't understand if someone is intollerant to gluten shall he be forever ?


If you have Celiac Disease - It is forever.

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"Children in a family are like flowers in a bouquet: there's always one determined to face in an opposite direction from the way the arranger desires."
~Marcelene Cox


"Earth laughs in flowers."
~Ralph Waldo Emerson





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