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DKFusion
@DKFusion

Posts: 2
Joined: Nov 11, 2015

Was my gluten challenge too short?

Posted by @DKFusion, Nov 11, 2015

Was my gluten challenge too short?
My daughter tested very positive for Celiac which was confirmed with the Endoscopy. Her doctor suggested that my wife and I get tested.
We had thought that I may have it as well as I had been on a extremely low carb diet that one of my doctors put me on to help control my
reflux, which a lot of issues went away shortly after going onto the diet. I checked with my primary doctor to see how long I need to do the
gluten challeng and he said to eat a normal gluten based diet for a week (what is a normal gluten based diet?)
I checked with my gastro doc and he said to eat 4 slices of bread a day for 4 weeks. The thought that I may have
it came from about 2 weeks before my daughter was tested and I had a few glasses of Whiskey (cheap stuff) and the next day stomach
cramps and many visits to the bathroom. Everyone passed it that I was hung over, which I have never been before.
A week or two later I have even less whiskey and get sick again (black velvet whiskey)
The next day I have a piece of cake and I get sick yet again.. Not really knowing what is going on.

My daughter gets tested and comes back positive. I start the gluten challenge and it was hell for 4 weeks. Massive fatigue comes back,
bruises all over again, stomach cramps (whcih were new), many visits to the bathroom (new), socially withdrawn, gained 25 lbs and massive
appetite came back.

Reading on the celiac disease foundation site they suggest a 12 week period for a gluten challenge.

Was mine too short?
My doctor ordered 2 tests. The Tissue Transglutaminase IGA and the Gliadin Antibody IGA.
Both came back negative, but online reading suggests that anything short of 6 weeks is too short and you will get a negative result.

2 days after I had stopped the gluten challenge, I feel a ton better.

Do I see a different doctor and restart the gluten challenge for longer (I would hate to restart it again)?

REPLY

Posted by @LeeAase, Nov 11, 2015

That’s an interesting story and question. I have celiac disease too…first diagnosed because I was anemic and then the Transglutimase IGA reading was over 100 (I guess normal is <4). Since then I've had several of my kids (and grandchildren) tested, and so far it's 2 children with celiac and 1 grandchild. One child was in the >100 range and another >40…so not as high but still outside the normal.

I’m not a medical expert..but was your result in that <4 range or was it a little elevated but not high enough to be "officially" considered celiac?

DKFusion
@DKFusion

Posts: 2
Joined: Nov 11, 2015
Posted by @DKFusion, Nov 11, 2015

Hi,
The Tissue Transglutaminase IGA test was 1.2 and the
Gliadin Antibody IGA was 4.8.

I should also mention that I am fairly deficient on vitamin D (even though I am outside riding my bike every day) and I need to take 10,000 IU’s of vitamin D to be in the normal range. I have been off of the gluten challenge for a week now and I “feel” normal again.

There seems to be a lot of inconsistent information regarding the gluten challenge, how much gluten and how long.

Posted by @colleenyoung, Nov 23, 2015

Hi @DKFusion
We brought your question to Dr. Joseph Murray, a gastroenterologist and celiac disease expert at Mayo Clinic. He responded with this video reply.

http://celiacblog.mayoclinic.org/discussion/was-my-gluten-challenge-too-short/

I can definitely understand your reluctance to do the challenge again. How long did you try the challenge and how much bread did you eat? Will you try again?

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