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How To Judge Recovery And Xc With Inconsistent Symptoms


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#1 user853

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Posted 10 September 2012 - 07:14 AM

I was dx with celiac based on antibodies in March. I was gluten-free for 4 months with no improvements (actually felt terrible), so went back on gluten for 2 months to do an endoscopy. Endoscopy was positive.

I DO NOT have GI symptoms. My only symptoms are tingling (I would call it neuropathy, but it is not in my extremeties). And, they are not consistent with gluten consumption (i.e. I can eat gluten every day but do not have the tingling every day).

So, with that. How do I judge recovery? Obviously gluten-free for 4 months didn't improve the tingling. And, if I have not obvious symptoms, how do I know if I have had exposure through cross contamination?
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#2 pricklypear1971

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Posted 10 September 2012 - 07:19 AM

Short term - antibody testing.

Long-term - you'll probably develop symptoms. I didnt have symptoms until I was off more than 6 months, then they were not ones I expected. Then they changed.

If you didn't feel better going gluten-free, you may need to take out something else like dairy for a while, too. Or, you were having a prolonged withdrawal period? Did they test vitamin levels - iron, b's, D's, etc.? Being low on one or more can keep you from recovering or feeling better.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 bartfull

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Posted 10 September 2012 - 07:26 AM

That's a tough one. They say it takes longer to get rid of neurological symptoms than any of the others so the tingling will probably get better with time. You MAY develop digestive symptoms after you have been away from gluten for a while too. I never had much in the way of digestive symptoms either, but 15 months after going gluten-free I got glutened and now I KNOW I have digestive symptoms. YUCK!

But the great thing is you have been tested. So the way to tell is to go back for more blood tests every six months to a year and they will show you whethter you are improving or not. I never got tested so I just have to go by my symptoms which are mostly skin related, or at least they were until recently.

There are also some folks on the board here who are feeling great but tests show little to no improvement, so be grateful you can at least see a doctor, be scrupulous with your diet, and be patient about the tingling. It will improve eventually.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 user853

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Posted 10 September 2012 - 08:00 AM

Did they test vitamin levels - iron, b's, D's, etc.? Being low on one or more can keep you from recovering or feeling better.


All my vitamin levels are fine and I eat a limited about of dairy already.

I didn't realize that antibodies would change after being gluten-free.
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#5 justlisa

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Posted 10 September 2012 - 09:23 AM

I was dx with celiac based on antibodies in March. I was gluten-free for 4 months with no improvements (actually felt terrible), so went back on gluten for 2 months to do an endoscopy. Endoscopy was positive.

I DO NOT have GI symptoms. My only symptoms are tingling (I would call it neuropathy, but it is not in my extremeties). And, they are not consistent with gluten consumption (i.e. I can eat gluten every day but do not have the tingling every day).

So, with that. How do I judge recovery? Obviously gluten-free for 4 months didn't improve the tingling. And, if I have not obvious symptoms, how do I know if I have had exposure through cross contamination?


As I recall from your other post, your time gluten-free was ripe for possible/probable CC.

Gluten intolerance is autoimmune...not an "allergy".

Without gastro issues, you are not, necessarily, going to have "immediate reactions"...

Neuro symptoms can (if they do) take a while to improve.

As others have said, you will possibly need to determine if you have other intolerances...or if other foods might be exacerbating symptoms.

You now have an answer...a dx... That's good news.

The best advice I can give you is to be very vigilant in avoiding gluten. There's no such thing as "a little bit won't hurt you" when it comes to gluten intolerance. And, just be patient...hard, I know, but this is a big part of it.

Good luck...
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