Negative

[smacky]

I'll try to keep this brief. About two years ago, I started having some neuro problems. Ataxia. Falling down. Chronic infections. I didn't have any health benefits but a friend's sister was a naturopath who told me, above all else, that I should be gluten free. I took her advice and found relief almost right away. Over the last couple of years, I'd had some worries, rashes and ulcers that didn't seem to go away. Even though I couldn't pinpoint my having been glutened, I couldn't think of any other explanation and chalked it up to my having eaten something with gluten in it.

Finally, I got a job with benefits and could take some time off work to visit my doctor who sent me to a GI. He test me for an anti-endomysial antibody test and I just found out today that it came back negative. Which seems puzzling. I suppose it could have all been a coincidence that my having gone gluten free and having an improvement in my overall health were related. Which would be good! But still leaves me wondering what the heck is really wrong with me then. Anyway, I'm phasing in gluten starting tomorrow and I figure that if gluten is a problem, I should definitely see something dramatic happen within a week.

I don't even really know why I'm posting this here. I guess I'm just baffled. I mean, I spent two years gluten free, possibly for nothing?! And ... why did I fall down like that? I guess if I'm not really a celiac, this will be my last post, not that I made any anyway. I did want to say that I lurked here a lot, mostly so that I'd know that I wasn't the only person having these experiences, so ... thanks. You helped even if you didn't know you were.

[Guest cassidy]

If you were gluten-free for 2 years before you were tested, then your tests would come back negative even if you have a problem with gluten. You have to have recently ingested gluten to have a positive test result.

Also, if you felt better gluten-free, then stick with it. Trust your body, not a test result. Many, many people on this board have had negative test results and are gluten-free because it makes them feel so much better.

[ravenwoodglass]

  smacky said:

I'll try to keep this brief. About two years ago, I started having some neuro problems. Ataxia. Falling down. Chronic infections. I didn't have any health benefits but a friend's sister was a naturopath who told me, above all else, that I should be gluten free. I took her advice and found relief almost right away. Over the last couple of years, I'd had some worries, rashes and ulcers that didn't seem to go away. Even though I couldn't pinpoint my having been glutened, I couldn't think of any other explanation and chalked it up to my having eaten something with gluten in it.

Finally, I got a job with benefits and could take some time off work to visit my doctor who sent me to a GI. He test me for an anti-endomysial antibody test and I just found out today that it came back negative. Which seems puzzling. I suppose it could have all been a coincidence that my having gone gluten free and having an improvement in my overall health were related. Which would be good! But still leaves me wondering what the heck is really wrong with me then. Anyway, I'm phasing in gluten starting tomorrow and I figure that if gluten is a problem, I should definitely see something dramatic happen within a week.

I don't even really know why I'm posting this here. I guess I'm just baffled. I mean, I spent two years gluten free, possibly for nothing?! And ... why did I fall down like that? I guess if I'm not really a celiac, this will be my last post, not that I made any anyway. I did want to say that I lurked here a lot, mostly so that I'd know that I wasn't the only person having these experiences, so ... thanks. You helped even if you didn't know you were.

If you are gluten free the test will come back negative, also many that present with neuro symptoms predominating never show up positive, I wave my arms real real high for that one.

Also are you totally Gluten free, all toiletries, toasters, avoiding malt in cereals and drinks etc? It sounds like you may have DH also, you could get the areas adjacent to the rash biopsied, the skin will hold the deposits from the gluten for up to 2 years after you've gone gluten-free, if you really feel you need a definate diagnosis other than your dietary improvement you may want to see a dermotologist when the rash is active.

[smacky]

I asked my doctor before doing the test if I had to be eating a gluten diet and he said no. And the rash I get is a total body rash. Head to toe. And yes, I wasn't eating anything with malt in it. I had had a couple of accidents but I was pretty vigilant. I ate gluten today.

  cassidy said:

Also, if you felt better gluten-free, then stick with it. Trust your body, not a test result. Many, many people on this board have had negative test results and are gluten-free because it makes them feel so much better.

I will. I'm doing a two week sample. If I feel like I've been dragged by a truck at the end of the two weeks, then I'm going back to business as usual.

[Claire]

Hi Smacky -

Sorry to tell you - your doctor is wrong. Gluten free for 2 years and your test will definitely be negative.

Don't ever let him talk you into a gluten challenge. Doctors just don't know too much, sorry to say.

I have ataxia also though fortunately I have not fallen. Better not - I have quite severe osteoporosis.

Did you have an MRI that showed degeneration or was ataxia diagnosed by symptoms only? If there is visible degeneration improvement is unlikely - but gluten-free can help prevent further damage. If there is no visible damage then improvement may occur.

While I have some very positive improvements on gluten-free diet, the ataxia has not improved. Nor has it worsened.

Good luck. Stay with the gluten-free diet. You didn't make a mistake. The doctor did. Claire