...available which are specific to gluten sensitivity/intolerance as opposed to the well known tests which are diagnostic for CD....or are they basically the same tests?

Also is a Gastroenterologist the specialist of choice when it comes to investigation of CD or gluten sensitivity? Obviously neurologists and GP's are not cognisant to the fact that these things may be a causative factor in Peripheral Neuropathy. Are Gastroenterologists generally very open to the idea that someone may be gluten intolerant even if they do not have frank CD?

How valuable are the DQ2 and DQ8 genetic tests if any of the other mainstream blood tests come back positive? I realise that genetic tests tend to be more eliminative rather than diagnostic for CD, so do Gastrenterologists ever suggest having these done?

Thanks in advance for any input.

There are no tests "specific" to gluten sensitivity. Basically the same tests that are used in celiac testing... although because most doctors have reduced the celiac panel to a single test (anti-tTG)... It is important to be sure your doctor understands the need for the antigliadin antibody test.

The antigliadin antibody test is the best test there is for gluten sensitivity, but antigliadin antibodies are associated with many conditions (many of which have reports as being responsive to a gluten free diet... so in my opinion... a positive antigliadin antibody always indicates gluten sensitivity). A positive antigliadin antibody may be the ONLY positive test in someone presenting with neurological disease.

Here are some of the other conditions associated with antigliadin antibodies"
http://jccglutenfree.googlepages.com...niggantibodies
Don't miss the excerpt listed from
From: The Neurology of Gluten Sensitivity: Science vs. Conviction by Hadjivassiliou and Grunewald
I have seen the genetic testing used by celiac experts mostly as a means to "rule out" celiac disease in those without HLA DQ2 or HLA DQ8. It might occasionally be used to tip the scale to a positive diagnosis in someone with inconclusive other tests (say positive anti-tTG but negative biopsy). Celiac specialists may also recommend genetic testing for family members of known celiacs... because if family members have the same genetic predisposition, then they should be screened every few years. If not, they give them a 'pass'.

BUT, if there are positive celiac (anti-tTG or anti-endomysial) antibody tests... I can think of no reason at all to do the genetic testing. I did the genetic testing years after we began a gluten free diet more out of curiosity.

Dr. Hadjivassiliou has seen up to 20% of his patients with gluten sensitivity and neurological disease have a third genetic type of HLA DQ1, with the remaining having the "celiac genes" (HLA DQ2 or HLA DQ8). Most genetic testing done for celiac disease does not look for HLA DQ1, but ONLY look for the "main celiac genes - DQ2, DQ8).d

My daughter and I both have double copies of HLA DQ1 (testing done via Enterolab)...which in the end probably explains why we failed the diagnostics for celiac disease, yet had so much of the other stuff (GI symptoms, neurological symptoms, strong family history of autoimmune disease (celiac disease, pernicious anemia, diabetes). My daughter had only a positive antigliadin IgG. My blood work was all negative. I began a gluten free diet to support my daughter, but enjoyed resolution of my lifetime of nagging GI complaints.

Most GI's are only concerned about celiac disease. Most neurologists do not realize that gluten sensitivity can cause neurological disease, but I'd imagine this has changed some over the last five years as gluten ataxia is gaining recognition in mainstream medicine, being report at neurology conferences, in the neurology publications, etc.

All you really need is a doctor willing to order the blood tests. While GI's "own" celiac disease, I think it makes sense to have your regular doctor order the blood tests, and then follow up with a specialist if you have any positive results. I think you should be able to find a neurologist or GI who would appreciate gluten sensitivity w/o celiac disease~ you may just have to prescreen so as not to waste your time with a doctor who is unwilling to 'catch up' with the research. If your symptoms are primarily neurological, I'd follow up with a neurologist. If your symptoms are primarily GI, I'd follow up with Gastroenterologist (especially if you test positive for "celiac disease").

I can tell you just about any DAN! doctor/ integrative/ environmental medicine doctor will be likely to understand gluten sensitivity.

Cara

More:

Gluten sensitivity as a neurological
illness
M Hadjivassiliou, R A Grünewald, G A B Davies-Jones

In my experience, gastros. don't suggest gene testing. I don't think they're against it or anything - they just never seem to mention it (and I've seen at least 4 different gastros who knew about our gluten sensitivity issues).

You might want to try this: http://www.finerhealth.com/

It's not completely recognized by the greater medical community but puts some people's minds to rest as to whether they should pursue the diet or not.hth

Thanks for those responses. I have been reading a lot of Hadjivassiliou's papers along with others and am getting a fair understanding of this condition when it presents as a cryptic condition rather than the overt classic CD expression. It's a very interesting subject. I had only ever known of the Classic CD presentation and only two years ago heard of an acquaintance and her son who both were diagnosed and I couldn't believe that it was possible in an adult.....now I know better!!

Was wondering if anyone has ever used the home Coeliac diagnostic kit which is called 'Biocard TM Celiac Test' manufactured in Finland, www.anibiotech.fi

It is a home detection kit for the detection of Coeliac disease associated IgA antibodies to transglutaminase from a fingertip blood sample. They say that if one gets a positive sample obviously the final diagnosis needs to be confirmed by a medical doctor.

However if one gets a negative result there is still the question of the 3, 4, 5% of people who are IgA deficient, so therefore although the chance is miniscule, is it necessary to follow up with further testing??? Yes/no?

Has anyone had any experience with this particular kit and what are your thoughts?

I have not heard of that particular company/lab, but several at home kits are on the market now. I would trust it enough to be an accurate anti-tTG test, keeping in mind it is doing a test developed to predict villous atrophy (celiac disease) and a negative result would not rule out gluten sensitivity. A positive result would be quite conclusive (95% and up range). This test would be a starting point, and pretty much a done deal if you'd get a positive result.

Up to 10% (depending upon what literature you read) of those with celiac disease have IgA deficiency. You can also be 'low' in IgA and that might effect testing as well. My daughter is just a few points below the low end value and it gets a tiny bit murkier about how that might affect testing. Total IgA deficiency is defined as less that 7.

You could have your doc run a total IgA test at any time to close that gap.

Celiac Disease and Immunoglobulin A Deficiency... by Kumar, et al.Selective IgA Deficiency -IDF Patient/ Family Handbook


Some studies say that up to 20% of biopsy proven celiacs have negative bloodwork. The diagnostic testing is good, but not perfect. Here is a compilation of abstracts that demonstrate it is not uncommon to have celiac disease and negative blood work. And of course, you can have gluten sensitivity without celiac disease.

Limitations of Blood / Biopsy

Cara