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I Think Celiac Testing Is Flawed
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7 posts in this topic

Celiac Disease (as I currently understand it) means that there is villous atrophy that is being caused by the body’s immune reaction against gliadin proteins. According to literature I’ve read by Dr. Alessio Fasano, an individual can develop Celiac Disease at any time during their lifetime.

Here are the tests that are currently used in the medical community to diagnose Celiac Disease:

  1. Tissue Transglutaminase Antibodies (tTG-IgA, tTG-IgG)
  2. Anti-Gliadin Antibodies (AGA-IgA, AGA-IgG)
  3. Anti-Endomysial Antibodies (EMA-IgA, EMA-IgG)
  4. Deamidated Gliadin Peptide Antibodies (DGP-IgA, DGP-IgA)
  5. Total IgA count

Here are the reference ranges for the above-mentioned tests:

Deamidated Gliadin Peptide Antibody IgA:

0-19 is defined as normal

Deamidated Gliadin Peptide Antibody IgG:

0-19 is defined as normal

Tissue Transglutaminase Antibody IgA:

0-3 is defined as normal

Tissue Transglutaminase Antibody IgG:

0-5 is defined as normal

Total IgA Antibody count:

70-400 is defined as normal

Let’s try and define “normal.” What does “normal” mean? Does this mean that people who are perfectly healthy, who are having no reaction to gluten at all, have those numbers? Or does it just mean that people who may be having a reaction to gluten, but not enough to cause villous atrophy, may have those numbers?

I especially find “weak positive” vs “positive” to be hilarious. What does “weak positive” mean? I mean, come on! Does “weak positive” mean they THINK it might cause villous atrophy?

I suppose that scientists and/or doctors have arrived at these numbers as their definition of what (they think) is (maybe) going to cause villous atrophy. However, there are many questions and doubts I have about this, as follows:

1. How do they know that these numbers will or will not cause villous atrophy? What if a DGP IgA value of 15 causes villous atrophy in some people whereas a number of 21 does not cause villous atrophy in others?

2. What if the guy with the 21 number does not have villous atrophy yet because his body only started reacting to gliadin proteins a few months ago and not enough time has passed to develop villous atrophy?

3. Is villous atrophy all we care about? What other forms of damage can a DGP-IgA value of 20+ be doing? What about a value of 15? 10? 5? 1 even?

4. If you have a number greater than 0 of any of these SELF antibodies, doesn’t that mean you have a form of autoimmune disorder? If not, then does the body just make these antibodies just because it feels like it? Is the human body programmed by evolution to make at least a certain amount of these self antibodies (I seriously doubt it), or does it make them in response to stimuli?

5. If the latter, can the stimuli be anything besides gliadin and glutenin proteins? If so, what?

My theory: if your body is making ANY antibodies against SELF tissues, you have an autoimmune disorder, but I don't know what is causing it, nor can I tell you what type of damage it is doing to your body. I know, that's very helpful, isn't it?

What do you guys think?

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Hi Seeking.

Very thought provoking post and you ask some of the same questions that I have been asking myself as well. I too would like to know how they come up with establishing the ranges of normalcy. As of yet, I haven't found out the answers despite looking. I do know that my neurologist, when telling me my test results (which were 'inconclusive'), looked up at me and said, "Don't worry about that because who knows how many people in the test range were actually unconfirmed celiacs and skewed the ranges".

In one of Dr. Mario Hadjivassiliou's (UK researcher in gluten ataxia) interviews that I read on the celiac about.com page with Jane Anderson, he stated that anyone with elevated IGA should try a gluten free diet.

I have been trying to understand the ttg Iga response as well but am having a hard time wrapping my head around some of it. There are different kinds of ttg: tttg 2 (intestinal celiac), ttg3 (DH) and ttg6 (gluten ataxia - which is currently being developed for testing of gluten ataxia). So, what exactly is ttg (an enzyme, I believe) and is IgA specifically linked to ttg or is it linked other kinds of enzymes in the body but they only test for the ttg IgA?

Sorry that I can only offer more questions here and not answers but I would like to add in my voice and ask if anyone else has any answers for your questions.

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I don't have a lot of time, but I wanted to make a note, which I think is important:

You seem to be assuming that test results are ACTUALLY WHAT EXISTS. Tests are, by their nature, imprecise things. You get a reading of "3" on something, and there's a margin of error. Maybe what's really in your body is a 1 or a 6 (or something else - error varies by test, test type, and many, many factors). So, there needs to be some accounting for the fact that there is error in a test.

Additionally, "normal" ranges are generally set by running the test on a "large" group of "healthy" control subjects to find out what the normal range of results is. Various statistics are run, and you get what normal ranges are. Is this prone to mistake? Yes. Is this a less than perfect answer? Yes. Is it the best method we've got at the moment? Yes.

Finally, with celiac in particular, when people come up with a new blood test, you have to have something to compare it to, and that has been the classic standard of an endoscopy, which is looking for villous atrophy. So, yes, there is a bias that way. Because there is no other well established standard to compare it to.

Is testing flawed? Yes. It's getting better, but it's hardly likely to ever be perfect. Measuring these sorts of things in the human body is extraordinarily difficult, both from a "how the heck do we do a useful measurement accurately" and from the "what is it that we're measuring for".

But, you know, there is a LOT in the world that is flawed. We work with what we've got.

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Thank you, Tiffany. Well said.

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Hi Seeking,

I'd like to say thanks for posting those questions since it motivated me to search a little harder for a few things. I found a laboratory medicine wiki for the second year university students at the University of California. This link outlines how labs establish the reference ranges for testing:

http://ucsdlabmed.wi...t.com/chapter-1

Also, in answer to your third question about villous atrophy being the sole concern of damage from antibodies, in gluten ataxia research, the atrophy or shrinkage of the cerebellum as a result of the ttg 6 IgA antibodies attacking the Pukinje cells contained within it is also used as a marker.

In answer to your fifth question, a very recent study came out in which they drew the conclusion that continued unresponsivity to a gluten free diet could be due to antibody cross reacitivity to non-gliadin foods. You can download the PDF of the study here:

www.scirp.org/journal/PaperInformation.aspx?PaperID=26626

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I don't think that it is flawed so much as there isn't enough known yet. They are researching and trying to figure it out as fast as they can with all the difficulties involved. Here is an article about the difficulties with funding with medical research: http://www.forbes.com/sites/stevensalzberg/2013/01/14/congress-is-killing-medical-research/

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In answer to your fifth question, a very recent study came out in which they drew the conclusion that continued unresponsivity to a gluten free diet could be due to antibody cross reacitivity to non-gliadin foods. You can download the PDF of the study here:

www.scirp.org/journal/PaperInformation.aspx?PaperID=26626

This source says "We also observed significant cross-reactivity between a-gliadin 33-mer and various food antigens, but some of these reactions were associated with the contamination of non-gluten foods with traces of gluten."

It could be from cross reactivity or contamination.

In my experience, I don't react to things when I grow them myself, even if I do when I get the item elsewhere. There is also the problem of botanically unrelated items having very similar reactivity. I believe it is more likely to be contamination than cross reactivity.

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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