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Old 10-29-2007, 07:23 AM #1
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Default Are there any tests...

...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.
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Old 10-29-2007, 09:29 AM #2
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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
Quote:
"There is also confusion about the role of antigliadin antibodies as a screening tool. Given that gluten sensitivity can exist without enteropathy, it is inappropriate to estimate sensitivity and specificity of these antibodies against the presence of enteropathy as the 'gold standard'. To assert that antigliadin antibodies lack specificity based on the fact that 10% of the healthy population may have them is a misconception. It is entirely plausible that 10% of the healthy population with circulating antigliadin antibodies have gluten sensitivity without recognized manifestations. The prevalence of coeliac disease itself is now recognized to be 20 times higher than what it was thought to be 20 years ago because most cases are clinically silent. It is important to realize that amongst the 10% antigliadin antibody positive people lurks those with 'silent' gluten sensitive enteropathy."

"It is ill-considered to suggest that antigliadin antibodies should not be used as a screening tool because they are found in “healthy” individuals. It is also irresponsible to suggest that neurological patients should not be screened for coeliac disease unless additional factors are present such as unexplained anaemia or evidence of malabsorption."

"Neurologic manifestations of gluten sensitivity are a scientific fact, not a theological issue. Whilst the debate continues, we owe it to our patients to screen them effectively for gluten sensitivity with the simple widely available antigliadin antibody test so that we do not in the meantime deprive them of a harmless but potentially effective treatment in the form of a gluten-free diet."
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.

Quote:
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?
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
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Old 10-29-2007, 09:49 AM #3
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More:

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

Quote:
”But antigliadin antibodies lack
specificity”

IgG anti-gliadin antibodies have been
the best diagnostic marker in the neurological
population we have studied. IgG
anti-gliadin antibodies have a very high
sensitivity for CD but they are said to
lack specificity. In the context of a range
of mucosal abnormalities and the concept
of potential CD, they may be the
only available immunological marker for
the whole range of gluten sensitivity of
which CD is only a part. Further support
for our contention comes from our HLA
studies. Within the group of patients
with neurological disease and gluten
sensitivity (defined by the presence of
anti-gliadin antibodies) we have found a
similar HLA association to that seen in
patients with CD: 70% of patients have
the HLA DQ2 (30% in the general population),
9% have the HLA DQ8, and the
remainder have HLA DQ1. The finding of
an additional HLA marker (DQ1) seen in
the remaining 20% of our patients may
represent an important difference between
the genetic susceptibility of patients
with neurological presentation to
those with gastrointestinal presentation
within the range of gluten sensitivity.

”But antigliadin antibodies have
been superseded by
anti-endomysial and
transglutaminase antibodies”
The introduction of more CD specific
serological markers such as antiendomysium
and more recently transglutaminase
antibodies may have helped
in diagnosing CD but their sensitivity as
markers of other manifestations of gluten
sensitivity (where the bowel is not
affected) is low. This certainly reflects
our experience with patients with gluten
sensitivity who present with neurological
dysfunction. Endomysium and transglutaminase
antibodies are only positive
in the majority but not in all patients
who have an enteropathy. Patients with
an enteropathy represent only a third of
patients with neurological manifestations
and gluten sensitivity. Antigliadin
antibodies unlike endomysium and
transglutaminase antibodies are not autoantibodies.
They are antibodies against
the protein responsible for gluten sensitivity.
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Old 10-29-2007, 06:31 PM #4
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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.
Quote:
Many times patients themselves are able to deduce that it is wheat that causes them to feel ill or have intestinal symptoms, but when blood tests are negative they are diagnosed with irritable bowel syndrome or sometimes "wheat allergy". It is not surprising to me that blood tests in the early phase of gluten sensitivity are negative. This is because the immunologic reaction to gluten begins and occurs inside the intestinal tract and not in the blood per se. For this reason, I had an idea about a year ago that these antibodies should be more frequently detected in the stool of gluten sensitive individuals rather than in the blood. This turned out to be the case based on extensive analysis of more than 500 normal people or people with various medical syndromes (including bonafide celiacs, patients with microscopic colitis, a form of colitis genetically and clinically related to gluten sensitivity, and patients with chronic diarrhea of unknown origin). Based on this research and its importance, I have brought this new test to the public directly via the internet in a lab called EnteroLab . This new stool test can detect antigliadin antibodies in stool whether a person has symptoms or not. It is ideal for children who do not have to be stuck with a needle. Samples can be mailed from your home without having to go to the hospital or a doctor's office. Furthermore, you can decide if you want to be tested and do not have to beg a doctor to test you for gluten sensitivity.

Thus, because the antibodies produced as the result of gluten sensitivity are mainly secreted into the intestine rather than the blood, analyzing stool turns up many more positive tests than blood tests. It is only when the immune reaction has been present for long periods of time and/or the process is far advanced that antibodies are produced in quantities sufficient to leak into the blood.
hth
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formerly pakisa 100 at BT
01/02/2002 Even Small Amounts of Gluten Cause Relapse in Children With Celiac Disease (Docguide.com) 12/20/2002 The symptomatic and histologic response to a gf diet with borderline enteropathy (Docguide.com)
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Old 10-30-2007, 01:44 AM #5
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Default Home diagnostic kit!

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?
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Old 10-30-2007, 07:46 AM #6
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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
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Old 10-31-2007, 07:31 AM #7
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Thanks for all your input. It's wonderful!

Sorry about my seeming denseness when it comes to all the testing for CD.....I'm also battling this terrible fatigue and it takes longer for everything to sink in. If you were to spout at me, terms like 17-hydroxyprogesterone, 17- hydroxypregnenolone, androstenedione, 21-hydroxylase deficiency, aldosterone etc. ad infinitum they are like second skin to me and I could talk about them for hours......but IgA's and tTG's, I'm still trying to get my head around!

So.....if this home test (as I mentioned earlier in this thread), tests for IgA antibodies to transglutaminase and if I happened to be IgA negative, you are suggesting that this test may not be sufficient enough to erase CD from the equation because of the 10% or so of CD people who are IgA deficient?

Can you humour me and please tick the boxes for me here if you will. If a CD person is IgA deficient they:

1). would have low levels of IgA <7 (anyone know the unit of measurement?)

2). may have elevated levels of IgG

3). would have negative tTg's

4). I'm stuck on what the EMA levels could/would be!!

5). A stool test may uncover CD if there is GI involvement


Am I correct in interpreting M Hadjivassiliou, R A Grünewald, G A B Davies-Jones's finding (posted below in Cara's post) that where there are neurological manifestations then these diagnostic markers may be negative....and are they also suggesting that the newly found DQ1 genetic marker may be more indicative of people with neurological, as opposed to gastrointestinal symptoms.

I'll get it one day - I hope. I suppose I am studying each possibility of cause for PN in as much depth as I can because I very much believe (as Cyclelops said on the PN board) ..." I don't like taking potshots at diseases when the technology exists to arrive at a solid quantifiable diagnosis."
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Old 10-31-2007, 09:33 AM #8
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Quote:
So.....if this home test (as I mentioned earlier in this thread), tests for IgA antibodies to transglutaminase and if I happened to be IgA negative, you are suggesting that this test may not be sufficient enough to erase CD from the equation because of the 10% or so of CD people who are IgA deficient?
Correct. However, there is also an IgG version of the anti-tTG that can be used in the case of IgA deficiency. It is possible someone could also have IgG deficiency, but not as common.

Can you humour me and please tick the boxes for me here if you will. If a CD person is IgA deficient they:
Quote:
1). would have low levels of IgA <7 (anyone know the unit of measurement?)
Definition makes a difference.

From what I can gather, you may be considered IgA deficient if you have low IgA (below range), but you have Total IgA Deficiency if you are under 7. (I've also read 10). If you have Total IgA deficiency, the anti-tTG IgA test would be worthless. If you have Total IgA Deficiency you also have to worry about things like transfusions.

If you are low IgA, but don't have total IgA deficiency, it is a bit murkier about whether IgA antibody tests are accurate or not. It seems different doctors put different meaning to having low IgA. I've heard some say it would not affect the anti-tTG antibody tests, and I've heard others say it could.

Quote:
2). may have elevated levels of IgG
Yes, there is an IgG version of anti-tTG test that can be run in someone who is IgA deficient.

Quote:
3). would have negative tTg's
If someone with celiac disease has Total IgA deficiency, yes, the anti-tTG IgA test would be negative. It is important to note that even without IgA deficiency, celiac disease can be seronegative.

Quote:
4). I'm stuck on what the EMA levels could/would be!!
The anti-endomysial test also has both an IgA and IgG version. In a perfect world, the anti-endomysial and anti-tTG should give the same result... but it is not always the case. That is why some doctors order BOTH tests. Reducing the screening to a single anti-tTG test, IMO, is a cost saving measure that probably lets up to 20% of those with celiac disease slip under the tracks. While it might be ok for mass screening of the entire population, I think anyone who believes they might have GS/CD deserves to have ALL the tests run. There is the anti-reticulin test as well, that has fallen out of favor even before the antigliadin antibody fell. The anti-endomysial was pushed aside when the anti-tTG came along. I have known one person with celiac disease whose only positive antibody was anti-reticulin.

Still, the anti-tTG can be a starting point, because if it is positive.... you're done! But, a negative result is just the beginning of more testing. And, there are definitely people with gluten sensitivity who get negative results on all blood tests, but improve greatly on a gluten free diet.

Quote:
5). A stool test may uncover CD if there is GI involvement
The stool test created by Dr. Fine of Enterolab cannot diagnose CD. The stool test looks for gluten sensitivity, and Dr. Fine believes in treating all gluten sensitive people whether they have celiac disease or not. Gluten sensitivity may show in an endless number of ways (as celiac disease does)... including autoimmune disease, depression, GI or neurological symptoms, skin symptoms, and a whole lot more.

"Early Diagnosis Of Gluten Sensitivity: Before the Villi Are Gone" by Kenneth Fine, MD

Diagnosis of Gluten Sensitivity in the 21st Century by Kenneth Fine, M. D.



According to the current mainstream medical standard, only a positive intestinal biopsy can diagnose celiac disease. However, when the anti-tTG is positive, it is about 95% predictive they will find villous atrophy on biopsy. To further complicate, though, there can be false positives blood results.

There is nothing straightforward in this testing. They can make it look simple with a single test but in reality there are many, many ways the testing can be misleading~ with confusing situations arising when blood results don't match biopsy results, etc!


Quote:
Am I correct in interpreting M Hadjivassiliou, R A Grünewald, G A B Davies-Jones's finding (posted below in Cara's post) that where there are neurological manifestations then these diagnostic markers may be negative....and are they also suggesting that the newly found DQ1 genetic marker may be more indicative of people with neurological, as opposed to gastrointestinal symptoms.
Yes. In this population, it is quite possible that a positive antigliadin IgA or IgG antibody test would be the only positive antibody you may find. Often times only the Antigliadin IgG is positive, considered the weakest of the markers for celiac disease.

In celiac disease, there may be GI symptoms, neurological symptoms, neither or both. It is well documented that celiac disease can be clinically silent (no symptoms!) . It is also well documented that celiac disease can be seronegative (no positive antibodies!).

In gluten sensitivity, there may be GI symptoms, neurological symptoms, neither or both. It follows that someone may show gluten sensitivity by stool or blood test, yet be asymptomatic. It also follows that someone may have gluten sensitivity causing symptoms without it showing on blood testing.

The newly found HLA DQ1 genetic marker is only rarely found in celiac disease. I've read 1-2% percent. I have met a couple positive anti-tTg, biposy proven celiacs via the Internet who were double DQ1, so it always makes me a little crazy when they rule out celiac disease in those without HLA DQ2 or HLA DQ8... but you don't standardize tests based on the 1% exceptions, I guess.

What Dr. H. found through genetic testing of his antigliadin positive neurological patients is that 20% carried the HLA DQ1 type. I would love to see more research in this area because my family happens to have that type... we gluten sensitivity, autoimmunity, neurological and GI symptoms... NO celiac disease. The remaining 80% have JLA DQ2 or DQ8 as seen in celiac disease. I think one of Dr. H's studies or papers says about 30% of his gluten sensitive neurological patients show villous atrophy (have celiac disease as well). Don't quote me on that without finding the paper...my memory sometimes fails me.

I do think the blood testing (including antigliadin IgA and IgG) is worth doing in the event one gets a positive result. I'm open to the stool testing because I know many happy campers who had a positive stool test result and improved remarkably on the diet. In the end, though, one's response to the diet may be the best test of all. The problem when it comes to neurological disease is that it can take a long time (1 or 2 years) to see results IF there are going to be any. I can understand why someone would want a positive test result of some sort to commit to dietary changes for length of time.

I hope this adds clarification rather than confusion. I don't mind trying to explain. There is always a next level of explanation, another pitfall, etc, so keep asking if you are left wondering about anything.

Cara
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Old 11-01-2007, 06:16 AM #9
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Thanks Cara - that was fantastically understandable. I know how much time and energy goes into writing a message of that complexity - it can be exhausting.

I will copy it off and re-read it....but yes I can see how there are so many twists and turns to a diagnosis. Why can't it just be EASY!

Again many thanks!
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