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StephanieL

Member Since 17 Feb 2010
Offline Last Active Today, 06:44 PM
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Posts I've Made

In Topic: Thank You- A Very Special Day

Today, 09:17 AM

So the only test so far that was positive was the blood work?  

 

I am not trying to be a downer but just want you to be sure you are going into this with realistic expectations.  No genetics, no + biopsy and I would almost guarantee you that he's going to strongly suggest a challenge.  He/his office isn't even happy when there are 4  of HIS 5 diagnostic criteria met- they still want a challenge. 


In Topic: Thank You- A Very Special Day

Yesterday, 11:10 AM

Did you have the genetics done?  Are you currently gluten-free?


In Topic: Thank You- A Very Special Day

22 October 2014 - 05:42 PM

Are you still on gluten or not?  

 

If your blood work was "on the edge" with no positive biopsy, I would suggest getting your blood work drawn again and having it sent to the May clinic as well as wherever your past blood work has been done.  IME, Dr. Fassano still wants a positive biopsy if there is questionable blood work.  


In Topic: Gluten Challenge Prior To Endoscopy

19 October 2014 - 06:16 AM

If they suspect DH and he has an active case he's getting gluten somehow so they should be able to do a skin biopsy again to check. That would mean no need for an endo (unless you want one for a baseline).  A + for DH IS a Celiac dx.


In Topic: Ttg Still Positive And Stopped Falling, But Negative Dgp?

17 October 2014 - 05:53 PM

We are 5 years gluten-free and my DS's tTG's are still not normal.  After 3 years gluten-free we looked into the whole thyroid thing- He had hypo- tTG's did drop some after that but again, still not normal. Lead us all the way to seeing Dr. Fassano in Boston (which was useless but that is another story).  

We reevaluated and called ALL companies we use. We tested (at $13 a pop) any foods we were not assured.  We still have elevated levels.

 

I would look into the thyroid testing ASAP. I would also strongly  suggest next time you have blood drawn, you get it sent to 2 different labs.  I would have it done where you normally do and sent to Mayo as well and compare those results as well. They test may be different but you may be surprised with the results drawn at the same time sent to two different labs.