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Should I get tested

crumbles

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crumbles Newbie
crumbles
Posted

Hello everyone: I'm hoping someone can answer my questions:

I was diagnosed with MS about 10 years ago. I went gluten free nine years ago after several other people with MS mentioned that going gluten free helped their symptoms. I tried it and yes, my MS symptoms improved.

Fast forward to now.

I was referred to an allergist for stomach issues and stool leakage. I told my neurologist I thought it was gluten exposure as it was episodic. 

I tested positive (skin test) for wheat and a couple of other foods. 

Dr suggested a celiac blood panel. 

Since I've been gluten free for so long, is it likely to show positive? I have had a few accidental exposures over the last year or so and they have been due to either restaurants issues (they swear it's gluten free but my stomach says otherwise) or else I failed to read the labels properly.

(I'm only quibbling about the blood work as I have to pay for it 100%)

Thanks. 

 

 

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cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, crumbles said:

Hello everyone: I'm hoping someone can answer my questions:

I was diagnosed with MS about 10 years ago. I went gluten free nine years ago after several other people with MS mentioned that going gluten free helped their symptoms. I tried it and yes, my MS symptoms improved.

Fast forward to now.

I was referred to an allergist for stomach issues and stool leakage. I told my neurologist I thought it was gluten exposure as it was episodic. 

I tested positive (skin test) for wheat and a couple of other foods. 

Dr suggested a celiac blood panel. 

Since I've been gluten free for so long, is it likely to show positive? I have had a few accidental exposures over the last year or so and they have been due to either restaurants issues (they swear it's gluten free but my stomach says otherwise) or else I failed to read the labels properly.

(I'm only quibbling about the blood work as I have to pay for it 100%)

Thanks. 

 

 

Are you a gambler?  All celiac disease testing requires a patient to be on a full gluten diet.  For those who have been gluten free a challenge can be done.  Gluten must e consumed daily for 8 to 12 weeks (2 to 4 prior to an endoscopy).  Why so long?  It can take some people that long for antibodies to reach the bloodstream.  

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You had a positive on the allergy test.  So, you have a confirmed wheat allergy.  Is there a reason you want to rule out or confirm celiac disease?  It sounds like you have been doing great on the diet with only a few mis-haps.  

squirmingitch Veteran
squirmingitch
Posted

I will warn you that many, most, who do the gluten challenge for testing find their reactions to be so much more severe than they ever had prior to going gluten free. Some get so sick, they can not complete the challenge. 

An endoscopy requires a 2 week challenge as opposed to the 8-12 weeks for the celiac serum panel.

I have had a couple friends with MS & quite frankly, I would be terribly worried what would happen to you if you did a gluten challenge. 

crumbles Newbie
crumbles
Posted
  • Author

Thanks for the replies. Over the years, I've had people tell me that I should get a stomach biopsy and go back to eating gluten in order to get tested.

I decided a long time ago, I would never get a stomach biopsy as I wouldn't put myself (and the MS) through it. 

I COULDN'T go back on gluten as some of the stomach cramps I have had (when I've had a label mishap/restaurant mishap from a supposedly gluten free menu ) have been horrendous. I wouldn't knowingly do that to myself and I seriously doubt I could make a week let alone two weeks or 8-12 weeks! It might kill me or close to it.

I've decided to pass on the bloodwork as I got a positive on the wheat allergy, so that answers a lot of my questions, knocks aside the skeptic doctors and explains the stool. 

Since posting my question, the allergist told me not to bother with the celiac blood panel as I've been gluten free for so long with just a few mishaps. He said it's unlikely to show anything and that it won't change what I eat so why bother. 

Ironically, turns out I'm also allergic to beef which I haven't eaten in over three decades! 

Anyway, thanks everyone, I really appreciate the support.  

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