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  • Hallie Davis
    Hallie Davis

    Celiac Disease and Paraproteinemia (Serum Monoclonal Proteins)


    Celiac.com 02/28/2008 - A study published in the Leukemia Research Journal (Volume 30, issue 12, Pages 1585-1586 - December 2006) looked at samples of serum from multiple myeloma patients. In 35% of the samples the myeloma monoclonal proteins had antigliadin activity, and migrated just like celiac anti-gliadin antibodies when subjected to electrophoresis. Monoclonal gammopathy (MGUS) is a precursor stage to multiple myeloma, with the same or very similar sort of monoclonal proteins as in multiple myeloma, and converts to it at the rate of about 1.5% per year. Therefore if one lives for 20 years after diagnosis with MGUS, one has a 30% chance of ending up with deadly, so far incurable, multiple myeloma, which is a cancer of the bone marrow and blood. For those diagnosed with MGUS it seems like a time bomb ticking, and each time one goes for the monitoring blood tests, there is some degree of anxiety. It was postulated by the researchers that multiple myeloma may actually be an end result of untreated celiac disease. This is why there has been a large reaction about this on the various MGUS web forums.Thirty-five percent is very high! At least one of our ChooseHope.com MGUS forum members was recently tested and found to have Celiac Disease and there are numerous other persons on the various MGUS forums alleging that they have this combination of conditions.

    In another publication from the database at PubMed.gov (Gut. 1976 Sep;17(9):735-9.), a study that showed that when a patient with MGUS and Celiac Disease was put on a gluten-free diet the monoclonal proteins entirely disappeared by the end of 3 years! Hence you can imagine what big news this is to all the MGUS patients, on the various online MGUS forums. Here is the suggestion that Celiacs might avoid becoming MGUS patients, that MGUS patients might perhaps avoid progression to multiple myeloma, and that multiple myeloma patients might have halted or slower progression of their disease, simply by being on a gluten-free diet! This is indeed big news!

    The ramifications of this are that everyone with Celiac Disease really should undergo testing for MGUS/Myeloma which can be associated with various autoimmune diseases, increased rate of osteoporosis,  and neuropathy, or no symptoms at all! Likewise all MGUS patients should be tested for celiac disease, which again can be associated with various autoimmune diseases, increased rate of osteoporosis,  and neuropathy, or no symptoms at all! Do you see the similarities?

    I am currently working on a letter to Blue Cross Blue Shield,  informing them of the results of these studies and suggesting that their policy of reimbursing for celiac DNA testing of first degree relatives of known celiacs should be expanded to also include all persons having serum monoclonal proteins. This would include not just MGUS and multiple myeloma, but also Waldenstrom's macroglobulinemia.

    I would also like to call for intensified research on the link between celiac disease and paraproteinemia.


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    I want to let all of you MGUS (and other) patients know not to quit your celiac testing prematurely. My celiac specialist, who is probably the nation's, if not the world's foremost celiac researcher, told me that even if the blood antigliadin IgG and IgA, EMA, and TTG tests are all negative or equivocal, one should proceed to have the celiac DNA tests. And he further stated that even if those are negative, they only usually test for DQ8 and DQ2, so if these are negative, one can STILL have celiac. He says they are finding out that many genes are involved, not just those two. So then if celiac is still suspected, one should proceed to having intestinal biopsies done.

     

    As a case in point, one of our ChooseHope.com MGUS patients found in the past that all of her blood tests for celiac were negative. However recently she resumed testing with Enterlab, and they found that both her fecal antigliadin test, and her DNA test were positive!

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    Sheri,

    While it is true there is no known cure so far for multiple myeloma, there ARE various treatments that can give significant remissions, prolong life, and help retain quality of life longer. By testing celiac patients for MGUS and multiple myeloma those who turn out to have MGUS can be monitored and receive prompt treatment if their condition converts to multiple myeloma. Those who have multiple myeloma can be entered into treatment if their stage warrants it. There are many clinical trials currently in progress on multiple myeloma, and one of these just may turn out to be the actual cure we are looking for! It's just too early to know yet for many of these trials. And even remission is welcome to those who have it. As they say, 'Where there is life, there is hope!' So much research is ongoing that we have minor breakthroughs about this cancer all the time, and a major breakthrough is surely not far away. I have a relative with multiple myeloma who has lived about 13 years with various treatments. Without treatment he would have been dead long ago. Instead, however, he comes every year to our family reunions!

     

    There is another paraproteinemia called POEMS syndrome. It has been found that high dose chemotherapy followed by stem cell transplant, has been followed by extremely long remissions, perhaps some cures. Only a few persons have relapsed. This may turn out to have been a cure for many of these patients. It is just too early to know yet!

     

    I hope I have illustrated that it does not pay to take a fatalistic approach to the possibility of MGUS/multiple myeloma and other paraproteinemias.

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    Guest joe Pagliarini

    Posted

    This article sounds like that last 4 years of my life. My mom is celiac and although none of the tests showed celiac my wife insisted I follow this diet since after therapy for my bone marrow para proteins I could not get control of my digestive system. I have never gone of the diet and recently after 3 years on the diet religiously my proteins have disappeared entirely.

     

    Wow I can not wait to share with my oncologist and primary care physician.

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    Guest Lois Wannamaker

    Posted

    I am really glad I found this article. Recently I went to have regular check for my MGUS and they told me I need to be more vigilant with my gluten free diet, I've been gluten intolerant since 1980. Also they found the MGUS is causing neuropathy and that is why my carpal tunnel surgery was not successful and came back - bad proteins stick to nerve endings. Now it is in my legs and feet and have to use a cane. I had never been very careful with my gluten free diet but now I will be more vigilant.

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    This IS interesting, I have had a VERY bloated stomach for several years and I am a baker, eats HEAPS of wheat.

    Was diagnosed for MGUS, 1 year ago now am having monthly tests as my M is 29.1.

    About to order curcumin once I figure out best quality and price.

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    I am relieved to see these remarks and the article. I have MGUS, but the doctors I had here on Long Island don't seem to have the first clue! I put myself on the diet to reverse the MGUS in July 2010, after researching and finding a commonality the excess M protein in the red blood cell that the oncologist explained to me was MGUS and in celiac, and also discovered that other conditions I have had for over 30 years also started to subside (nerve damage, osteoporosis, skin sensitivities, arthritis, and extensive digestive problems) within 2 weeks of starting the gluten-free diet. My PCP said I should stick with it in view of those improvements. I did agree to an endoscopic procedure a month later, which was negative, but caused an injury to the site where the biopsy was taken in my upper GI region. He also neglected to tell me about a hiatal hernia he supposedly detected in 2008 when treating me for ischemic cholitis, but never told me I had it, or to treat for it. My MGUS numbers were in Normal range after 10 months on the gluten-free diet. I plan to continue, but because I don't have a specific positive diagnosis for celiac, I do for MGUS, the GI who performed the test later in the year told me to see a shrink when I was hospitalized late 2010 and then again in March 2011, for an intestinal blockage, resulting in surgery to remove a 9 inch adhesion in the appendix region. If the doctors aren't aware or willing to learn I will treat myself. I don't trust the doctors in my region. Thank you for this information.

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    I was diagnosed with MGUS last year. I went gluten-free and the MGUS disappeared. I no longer need blood test monitoring.

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    This is a very interesting article. I often search for genetic links, or th 'why I have celiac'. My father died of Leukemia at age 38. I was diagnosed with celiac at age 30, with osteoporosis at age 36. Now at 51 my osteoporosis is reversed, I'm healthy and enjoying life and FOOD. But I will be checked for MGUS.

    How did you reverse the osteoporosis?

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    I am gluten intolerant, have celiac disease which developed in multiple myeloma. I went into immediate remission after about 5 months of Velcade. I feel great! I also followed Dr. Huldah's protocol, with respect to the de-malonating diet, and the addition of specific amino acids. That along with the green hull of Black Walnut Hull drops and cloves to kill all parasites. I saw improvement in my counts around the second month of chemo. I continued with Alkalife, to keep my system alkaline, and added fresh papaya with the black seeds included, and aloe directly from the gel in the leaf to my daily diet. These have properties that kill the multiple myeloma cells. I was told to go gluten free, but didn't adhere strictly. Even when the m count was undetectable, sometimes after eating a gluten product, I'd continue to have a burning back paint. At the same time as the MM diagnosis, I was diagnosed with acid reflux disease, and have been on protonics for 9 months, since this first occurred. As I a m in complete remission, I am certain that by continuing to be strictly gluten free, and adhering to the above protocol that the mm will not return to take my life prematurely. I'm 59 and I believe that I can live another 20 years cancer free. The only other things that I used were Uma da Gato, which I boiled from the bark and took a small swig of daily. The morning power drink I make is with organic arugulla, spinach, flax seeds, shitake mushrooms, turmeric, green onion, almonds, aloe vera, and garbanzos. I also do everything that my oncologist tells me to do.

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    Hi, my father was diagnosed with multiple myeloma last year and since than I have researched about this disease. I found it interesting that there might be a connection between it and celiac. I have gerd and gastritis a lot though no obvious risk factors for this. I took huge amounts of stomach medications for it the past three years and nothing was working really well. Then I remembered that my sister was sensitive to wheat, and that the stomach problems ran on my fathers side of the family. I decided to go gluten free, even though I was tested for celiac in an endoscopy 2 years earlier and it came back negative. After being one week gluten free I was able to quit my stomach med (Nexium). After one month being off of Nexium and gluten I had a blood work done and my hypothyroidism was gone and also my platelet count that used to be low for the last 2 years was normal. ( I haven't been diagnosed with any condition about this though, was always unspecified thrombocythopenia of unknown cause) . A week later I reintroduced wheat/gluten in the form of two slices of white bread. I literally was sick half an hour later with diarrhea and horrible bloating, and had to get back on my Nexium the following day with severe gastritis! Kind of clear, huh? I immediately quit the gluten again and was able to quit the Nexium 2 weeks later. Since then I'm gluten free and feeling wonderful. I wonder if my dad is gluten intolerant and doesn't even know....

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  • About Me

    I am a retired Doctor of Optometry after practicing for 20 years. I have monoclonal gammopathy (paraproteinemia), limited systemic scleroderma, Hashimoto's thyroiditis, obstructive sleep apnea, beginning neuropathy, and have just been found to have the celiac HLA type: DQ8.

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