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Was my gluten challenge too short?
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bruises all over again, stomach cramps (whcih were new), many visits to the bathroom (new), socially withdrawn, gained 25 lbs and massive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)?
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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?
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1 ReactionHi,
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.
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1 ReactionHi @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?
Hi, I can't access Dr Murray's video reply with the above link.
Hi. I sympathize with DK fusion. I ate a normal diet for 50 years until a routine colonoscopy upended my GI health, for reasons I still don't understand. I eventually went on a FODMAP diet, which gave me some relief, but over the course of the next two years, lost my ability to tolerate even small trace amounts of gluten (and also trace amounts of dairy, even lactose-free dairy and butter).
When I was tested, we discovered that I had the gene for celiac disease, but I couldn't be formally diagnosed because I could not withstand the six weeks of gluten challenge. I can't even eat food that has been adjacent to gluten, let alone consume it several times a day for 6 weeks. The sickness is intolerable.
In the end, I've simply adopted the celiac lifestyle and go without a formal diagnosis. If you've been through that much misery in 4 weeks, then you already know that your body can't tolerate gluten, so the official diagnosis probably doesn't make that much of a difference. When I go to a restaurant. I simply tell them that I have celiac so they know it's a medical issue and not a lifestyle choice. Good luck!
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1 ReactionI do not have celiac disease but am not able to tolerate gluten under a larger umbrella of starches. My diagnosis is CSID, congenital sucrase isomaltase deficiency. There is also ASID, which is acquired rather than congenital. For years I was just told I had IBS. Testing for CSID/ASID can be done with a breath test and further verified with an enzyme assay during an endoscopy. (Also lactose intolerant). Once you find out you have it there is a very specific diet that you follow. It could be something to consider, although this is a rare disorder.
I do not have celiac but my doctor diagnosed me as gluten intolerant. My doctor recommends everyone go gluten free as gluten disrupts the digestive tract to varying degrees for everyone. It’s interesting if you research the wheat grown in the US vs Europe, Red wheat vs white wheat and that the US adds gluten to products like bread, cakes, etc. to make these products fluffier. When I travel in Europe, I eat the bread and pastas without any problem. I will look for the article I read and post it here soon.
Here’s the article:
“European Wheat vs American Wheat: What’s the Gut’s Reading”, author is Pedram Shojai.
I’ve learned so much on
my gut journey, lots of trial and error, supplements, dietary changes to feel normal. Not done yet but getting there. Wishing everyone the best to resolve gut issues. 💜