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Mom2-2girls

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Mom2-2girls Rookie
Mom2-2girls
Posted

Hello. My daughter who is 5 has been tested for celiac. This whole process started in early May it is now mid august and we still don't even have an endoscopy booked. Her symptoms are getting worse each week it seems. It is breaking my heart to see her in so much pain.

"On 2012-08-13, at 8:41 AM

Good morning Ms. Nedza

" TTG result is back and it is positive. Her antiendomysial antibody is positive at 1/160. Her TTG anti IgA is >100 and her anti TTG IgG is 9.8.

PLease let me know if you have any further questions."

I had requested the reference numbers but this is all I got. Does this look weak or strong? Any thoughts? They said the endoscopy would be 4-8 weeks to schedule. It has already been 3 weeks since our appointment and no word. :(

FYI - We live in Canada and this is at the Hospital for Sick Kids.

Thank you!

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Lisa Mentor
Lisa
Posted

Start her on the gluten free diet and relieve her of her pain. If she is uncomfortable, there is no need to continue on a full gluten diet just to be tests by an endoscopy. She's five :( And testing is not as reliable with children under the age of five.

A positive result on the diet is an additional confirmation of Celiac Disease or a gluten intolerance.

Either way, please ease her distress. And, I wish you great success. :)

beachbirdie Contributor
beachbirdie
Posted

Hello. My daughter who is 5 has been tested for celiac. This whole process started in early May it is now mid august and we still don't even have an endoscopy booked. Her symptoms are getting worse each week it seems. It is breaking my heart to see her in so much pain.

" TTG result is back and it is positive. Her antiendomysial antibody is positive at 1/160. Her TTG anti IgA is >100 and her anti TTG IgG is 9.8.

PLease let me know if you have any further questions."

I had requested the reference numbers but this is all I got. Does this look weak or strong? Any thoughts?

Thank you!

First, I second the suggestion to edit the post to remove any personal information. Anyone can see it, it can also be picked up by robo-harvesters. Better to be safe!

Edited to add: Ahhh, good, I see you cleaned it out! :)

Now on to the tests. The anti-EMA is quite high. Endomysial antibodies are a strong sign of tissue damage, and are pretty specific to celiac. You could save your daughter a lot of pain by taking her gluten free. The 1:160 number means it took a large number of dilutions to get to a point where no antibodies were seen. Meaning there were a LOT of them to start with.

Even without a reference range, that is very high. As is the TtG IgA. I don't know whether you can tell on the TtG IgG, your daughter's number is very close to some of the reference ranges so it's hard to know where the result fits in.

With those other two tests, I think there is very little doubt of celiac. If she were my daughter, I'd get her off the gluten now, without waiting for them to get around to scoping her. It could be months.

Mom2-2girls Rookie
Mom2-2girls
Posted
  • Author

Yes it sounds like it could be a couple months. I going to call and bring up her worsening symptoms. It took 2 months just for a consult. :(. They don't diagnose without the scope at Sick Kids. Maybe our ped would?! I doubt it though as he barely wanted to talk to us about it and just wanted us to see the specialist.

Thanks so much for the analysis!!!

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