Hi,

I'm new to the forum and am grateful that I found such a wonderful resource/community like this.

I posted in the Peripheral Neuropathy section, but wanted to get some advice/comments from the Celiac side of things too.

My sister has had burning/tingling/vibrations in her hands, feet, face, and other parts of her body, for 1-2years now. In that time, her hands and feet have become weak to the point of her not being able to use them for long periods of time (she can't walk more than a few minutes before it gets burny). Before this, she was fine and very active.

No tests really uncovered anything (other than a MRI that showed she had small white lesions in her frontal lobe), so we did a Lyme test recently. The test didn't classify as a positive, but she did have a low CD-57 (natural kiler) count, which along with all her symptoms, may point to lyme.

The treatment for this is antibiotics, but we're trying to rule out all other things before going this route.

That being said, I was reading up on Celiac Disease, and want her to test for this first (as alot of her symptoms could point to this). My question is, has anyone encountered this crossroads before, and/or have experience/advice on the matter? I was trying to find information on whether having Celiac Disease could fit my sister's situation (i.e. low CD-57, no gastro problems, but neuropathy ones, white lesions), and couldn't come to a clear cut answer.

Any information/comments would be appreciated. Thank-you.

It certainly is possible to have neurological symptoms from gluten sensitivity/celiac even in the absence of gastric symptoms. These can include peripheral neuropathy, cerebellar ataxia, even brain "lesions" resulting from the autoimmunity process.

There are certainly other possibilities (including Lyme, which is a great mimicker of other conditions), but it sounds like she at least needs some initial blood testing for cleiac/gluten sensitivity--the anti-gliadin IgG and IgA assays, total IgA (if total IgA levels are low, the other test results can be skewed), anti-transglutaminase IgA/IgG, and perhaps anti-endomyesial assays, just to see if something shows.

The gold standard for diagnosing celiac is still villious atrophy upon small intestinal biopsy, but there are certainly people who are gluten sensitive with all sorts of neurological symptoms who don't show that.

It would be a good idea if you look at the Useful Websites heading here, especially at the massive database of info and studies known as The Gluten File, put together by jccglutenfree and the most comprehensive info source on the subject yet devised; it would help bring you up to speed, get you familiar with the reseach, and help in forming questions--note well that most doctors are not anywhere near as well-versed in this area as jcc is.

Thanks glenntaj. I started reading through the Gluten File, and the information is really helpful!

2 specific questions come to mind at this point, and I was wondering if anyone has any experience or could give me answers on the following:

1) When testing for Celiac disease, will the test also indicate Gluten sensitivity? Or are they 2 separate tests (if so, what do they entail)?

2) For the low CD-57 (Natural Killer) count that my sister has, could this possibly be caused by Celiac (i.e. an auto-immune response)? I've read and was told that low CD-57 means the body is fighting something, but is losing, and that the only 2 things known to be linked to a low count is HIV or Lyme

Thanks!

--there's a lot of info out there on your second question--anything I could say would be pure speculation (though gluten problems are known to influence a host of bodily processes).

As to the first, though, there is some degree of controversy regarding exactly what "standard" gluten tests show.

The current gold standard for frank celiac disease is villious atrophy seen in biopsy of the small intestine. Celiac is notoriously undersiagnosed this way, though, as one can be testing during an early stage of the disease before there is much atrophy, or the samples can be biopsied from an area where ther is not yet obervable damage. (This is why some advanced gastric specialists really like to try the capsule camera approach--but that canb e hit or miss, too.)

One other indication of frank celiac is the skin condition dermatitis hepatiformis, which involves skin lesions with IgA deposits--there is some evidence now that other conditions might also result in such lesions, though.

Among the blood tests, given a "normal" level of IgA antibodies (some people have IgA deficiencies), the anti-transglutaminase IgA assayis suppoed to be most specific for celiac, in that it seems correlateed with degree of villius atrophy. However, a full celiac panel also includes the anti-gliadin IgA and IgG assays. Depending on whose opinion you read, the anti-gliadin IgG test is the least specific, but most sensitive test--there are a number of people without gastric symptoms but neurological symptoms who seem to show up with isolated positive anti-gliadin IgG results.

There are also several other serological tests in the works that haven't yet gotten widespread dissemination, that JCCglutenfree knows a lot more about than I (got to get her to come over here and comment).

Thanks glenntaj.

My sister had blood drawn for a TTG test done over the weekend. Is this the same as the antigen test you mentioned, or something different?

We're going to see the results of this one before deciding what to do next (likely we will either go with the Lyme antiobiotics route, and/or keep seeing if there are other allergens/sensitivites).

Is the TTG test a good initial method for seeing if Celiac may be a possiblity? Our MD indicated it should be a good indicator.

--that one, I believe, is the anti-transglutaminase assay, which is most specific for determining possible villious atrophy.

A negative test there, though, wouldn't eliminate the possiblility of a gluten problem--that's why most of us say the anti-gliadin tests should also be performed--positive or high range results on those are not as specific but do indicate that the body is reacting (creating antibodies) to gluten proteins.

Results were negative for the TTG. We're going to probably start antiobiotic treatment for Lyme, and see how that goes. Along the way (once things stabilize), I'm thinking might be an idea to revisit Gluten sensitivity or just cut Gluten out of her diet, and see how she responds.