Monday, February 11, 2008

Negative Celiac Tests

At my last oncologist visit, we discussed the connection between myeloma and celiac disease (gluten intolerance). Because one of my sons has celiac disese, he ordered a few extra tests to be drawn the very next day. Here are those results:

Test Name Result    Ref Range
Endomysial Antibody IgA Negative Negative
Gliadin Antibodies IgA < 1.0 < 20.0 U
Gliadin Antibodies IgG < 1.0 < 20.0 U
Tissue Transglutaminase IgG 3.0 < 20.0 U
Tissue Transglutaminase IgA 7.3 < 20.0 U
The tests labeled "gliadin antibodies" are also labeled "deamidated gliadin."

The first test, Endomysial Antibody IgA (EMA) is considered very specific for celiac disease, with almost no false positives or false negatives according to a Canadian study.

All tests were performed in a Mayo Clinic laboratory.

It appears that I DO NOT have celiac disease, although there are still two unresolved questions:
  • I had been on a gluten-free diet for two months before these tests were drawn. Should I have eaten wheat before the tests, as a "gluten challenge"?
  • Is it still possible that I have a subclinical case of celiac disease that causes inflammation if I eat gluten?
If the answer to either question is "yes," then I should continue the gluten-free diet. Otherwise, maybe it doesn't matter. It's a healthy way to live, but it's a lot of work and it's hard to eat out.

Recent lunch: Organic swiss chard with pistachios and cranberries, organic polenta, organic Braeburn apple, organic medjool dates.


  1. In view of the possible connection to myeloma, I think it's good that we both got tested for celiac disease. My celiac test results were negative, too. Well, that's out of the way, with, I admit, some relief on my part, since I am a huge pasta-lover and live in a country that practically lives on pasta! Hard to avoid it.
    At any rate, speaking of healthful food, I just ordered and received a book titled "Foods to fight cancer," by Prof. Richard Béliveau and Dr. Denis Gingras. Recommended by Sherlock (:-)). Looks fascinating! I bet I will find some good blog research material there!
    Take care,
    Florence, Italy

  2. Sherlock's gonna save our lives yet!

  3. There might be a connection to myeloma, all though I´ve not seen studies directly between glutenintolerance and this disease. Gluten is connected to cancer (intestinal cancer). Reichelt, Cade, Vojdani and al has done research on glutenexorphins and casomorphins (peptides from casein and gluten) where their opioid action in the body might trigger autoimmunity, inhibit peptidases and bully the bodys endocrine opioid system.

    Best wishes

  4. Hmmm - I must admit, most of that flies right over my head. However, the implication is that while there is not a definite connection between celiac disease and myeloma, there is a definite possibility. Sounds like.

    That's enough for me right now to pursue a gluten-free diet, until we show that it doesn't help or until we get really tired of avoiding wheat and barley.


  6. Leuk Res. 2006 Dec;30(12):1585-6. Epub 2006 Mar 6.

    Antibodies contained in "M" component of some patients with multiple myeloma are directed to food antigens?

    Juranić Z, Radic J, Konic-Ristic A, Jelic S, Besu I, Mihaljevic B.

    Multiple myeloma is malignant disease that is characterized in most patients, by the presence in the serum of monoclonal gamma globulins, which in agarose gel after electrophoresis appear as protein band of restricted mobility, "M" component. The aim of this study was to determine are the antibodies contained in M-component directed to some antigen chronically present in the organism, to some of food antigens. Seventeen patients with secretory plasmacytoma were included in the study: eight of them had IgG(kappa), three had IgG(lambda), and one had biclonal IgG(kappa) and IgA(kappa), while two had IgA(kappa), the other two IgA(lambda) and one IgM(lambda) as paraproteins. M-proteins were detected analyzing patients' sera by agarose gel electrophoresis in 0.09 M barbital buffer. The each M-protein was confirmed by immunotyping (immunofixation) with corresponding antihuman antibodies directed to heavy or light chains of immunoglobulins. After the patients serum separation on agarose gel by electrophoresis, fresh 0.4% solution of crude gliadin (Sigma) in 1% SDS was put over the slides for immunoprecipitation. Preliminary results showed the interaction of gliadin with patient's serum proteins present in the protein fraction of the same mobility as it was the mobility of the M-component, in 6 from 17 investigated sera. These results are the first reporting that in sera of some patients with multiple myeloma antibodies from M-component could be directed to some of gliadin antigens. As the serum antigliadin immunoreactivity is present in patients with gluten intolerance, celiac disease, it could be of importance to elucidate is the multiple myeloma more severe form of gluten intolerance than celiac disease.

  7. I suffered intense celiac-disease-like symptoms beginning in 1993 which I 'treated' with a carefully constructed diet, built upward from amino acids, short-chain polysaccharides, and micronutrients. Anti-tissue tranglutaminase testing was uncommon at the time, but anti-endomysials and anti-gliadin were negative. Nevertheless, wheat obviously caused leaky gut, and milk promoted the condition. All the usual symptoms of leaky gut (except chronic fatigue) were there. In retrospect, epithelial damage (including of the BBB) could explain the gamut.

    Just last year I asked my GP to test for anti-tTG: no IgA or IgG, but lots of IgM. Waldenstrom's macroglobulinemia; m/l asymptomatic nowadays, except that wheat is a no-no.

    OC, the lesson is that the specificity of one Igs matters. I believe that, in my case and maybe yours Don, is that the ability of wheat to release intestinal zonulin is crucial. Eating wheat 'forces' some paracellular digestion, allowing semidigested, epitopal material to pass into the bloodstream. Igs react to that. Some reaction is in the gut, increasing leakage. One's lymphoma may be kicked up in any case.



  8. Don, you might want to consider a bit more testing. On one of our MGUS patients tested negative for all the serum blood tests. But then she had a fecal antigliadin test and a celiac DNA test, and BOTH came out positive.

    I, too, am an MGUS patient, and recently consulted with a celiac doctor and very noted researcher in this field. He said that even if all the tests, including the DNA test are negative, one can STILL have celiac disease because they are learning that there are more genes than just those two (DQ2 & DQ8) involved. So he is planning on doing intestinal biopsies on me even if all the tests come through negative!

  9. Hello h*****

    I have a son who is a celiac, and I agree that there is a likelihood that I am at least SOMEWHAT reactive to gluten even if the tests are negative.

    So I probably won't get more tests, but will act as if I were a celiac anyway. We eat gluten-free, except I have one really excellent beer each evening.

  10. That beer will negate your gluten-free diet. I am thinking if you really had medical confirmation of celiac, you would have more incentive to stay truly gluten-free. And after all, there is such a thing as gluten-free beer! :)

  11. Hi again H****,

    I personally believe that celiac disease is not a binary thing - there are degrees. Others may disagree. I am sure that I am not very reactive, and my CRP has always been very low. Further, the PET scan showed no areas of inflammation EXCEPT where the myeloma is lodged.

    The protein in barley isn't exactly gluten, but my celiac son nevertheless says that conventional beer gives him gas. So it is an issue.

    Perhaps I will do an (unusual) experiment. I drink my beer with dinner or just after, so I would expect that symptom to appear when I get up in the night to go to the bathroom. I'll drink gluten-free beer for a week (I have three different labels on hand) and actually count the gas episodes, then drink the more robust beer that I really like for another week and count again. I wonder if I'll have the courage to post the gassy results. :-)

    And I will discuss this with Dr. Lacy in a couple of months. If she suggests the biopsy, I'll have it.

    Question: I was already ON a gluten-free diet for a couple of months before getting all the blood tests, including the Endomysial Antibody IgA test. Should I have done a gluten challenge? My local onc said it didn't matter.

  12. People on gluten-free diets often have false-negative test results. You need to be loading gluten for two weeks before any testing or biopsies. I wanted to go ahead with a gluten-free diet, but the doc says to wait because he wants to do a biopsy and doesn't want things screwed up as far as getting a diagnosis.

  13. The problem with this little experiment is that some people with celiac have absolutely no GI symptoms on a regular diet. Their symptoms are entirely outside of the GI tract: things like neuropathy, autoimmune diseases, paraproteinemia, osteoporosis, Vitamin D deficiency, cancer. So for them making an exception, such as beer to their usual gluten-free diet may have no noticeable GI affect at all. And yet that beer may contribute to a gradual worsening of neuropathy, autoimmune disease, etc. - things that are not easily measured by the patient.

  14. Hi Don,

    I have monoclonal gammopathy, which involves paraproteins just as in multiple myeloma. Today I was sent the results of my celiac DNA test. I have the DQ8 gene. Looks like I'm going to have to learn how to cook all over again. I spent some time this evening looking at gluten-free cookbooks on

  15. Hi Hallie,

    Well the bad news is that you DO have to learn to eat all over again. By all means do look at the food pix on this blog and on Make It A Masterpiece. Every one of those meals is gluten-free, and they are VERY enjoyable and healthful food.

    But the really good news is that you may be able to stop that MGUS in its tracks! It's worth it. Best to you.


  16. Get tested thru

    Stool for gliadin antibodies are usually higher than in blood. Also the enterolab genetics test looks for all HLA types that go with gluten intolerance. If you test positive, then the permanent gluten free diet might prove beneficial in the long run......Isabel

  17. I just ran into this site because I am a biopsy verified, but blood test negative, celiac and my aunt recently died of myeloma so I was looking to see if there was any connection. Its apparently common to have negative bloodwork and be positive on biopsy for celiac. Or to be both bloodwork and biopsy negative and have damage show on a capsule endoscopy. While blood tests may show for sure that you *have* it, they do not rule it out. Celiac diagnosis is quite difficult. Information is changing all the time, you may wish to do more research on medscape for the most current info. I thought when my bloodwork first came back negative that I did not have it either, then a biopsy when I had an ERCP showed that I did have it. Confusing!

  18. Just passing by, because I had a positive MGUS lambda and I was also found to have gluten intolerance. In answer to your questions--YES the blood tests for celiac WILL be negative if you have not been eating gluten at the time of the testing. This happens to so many people that try the diet before they get tested, even the biopsy will be negative if you have not been eating gluten before getting tested.

    In my own case, they found the lambda chain while they were working me up for neuropathy which they thought might have been from the anti-gliadin antibodies (my levels were high). My levels of anti-gliadin antibodies took 2 years to go down, and when they did, the lambda chain was undetectable---they will continue to test me though. I think you should re-consider the gluten free diet, and see if it makes any difference in your numbers--it may take a while on the diet to see any results.

  19. I believe there is a connection. My sister was recently diagnosed with celiac disease, prior to having tests done the doctor sad she shuld be eating gluten, bc if she had stopped it would possibly alter the outcome. Also many people who have done blood tests for celiac have come out negative, you should ask for a biopsy of your intestine to really be sure you do not have celiac disease. My father was diagnosed with multiple myeloma last year and is on a gluten free, sugar free, and meat free diet. He is pretty much on a Vegan diet. DO some research on the relationship of sugar and cancer.

  20. So true, and what’s perhaps even more devastating is that there’s been so little support to help the community rebuild.Sigma antibody