mid-testing process questions

[calla84]

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! 

[GFinDC]

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.

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Welcome to the forum!

 

[calla84]

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.