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mid-testing process questions

calla84

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calla84 Newbie
calla84
Posted

I'm glad I found these forums!  I will spend some more time this evening reading through them.  But I wanted to get my question out there just to see if anyone else might have answers quicker than I can sift through the forum for them. :)  

 

I've been feeling terrible for about a year, and after an elimination diet last month, figured out that if nothing else, gluten/wheat is a problem.  After lots of research, I abandoned the elimination diet and added gluten back in, so that I could get tested for Celiac.  

I was off gluten for 3 weeks, from mid-June until early July.  I've had it back in my diet for almost 3 weeks now.   

My question is this: Since I was off gluten for 3 weeks, and now back on for almost 3, is that enough time on to yield a positive Celiac blood test, if that indeed is what I have?  All the research I've done says 4-6 weeks for a gluten challenge, but is that really necessary if I was only not eating it for 3 weeks? 

I am desperate to get this testing done and over with.  I feel terrible all the time and getting through the day is a struggle.  My doctor ran allergy panels already and everything came back clear except for a mild wheat allergy.  So if nothing else, I'll have to give up wheat for sure at the end of all this.  I get the feeling she doesn't know a ton about Celiac though, so I'm doing a lot of the research on my own.

Any advice or information would be so appreciated! 

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GFinDC Veteran
GFinDC
Posted

Hi Calla,

I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there.

There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great.

The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way.

The University of Chicago celiac center has an FAQ that answers some of your questions.

Open Original Shared Link

Welcome to the forum! :)

 

calla84 Newbie
calla84
Posted
  • Author

Thanks for the reply! 

Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...)

Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in. 

Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it.

Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable.

Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.

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