Just a quick post today. These days I have heaps of things to do that are keeping me away from my computer and my research. Errands, work, cookie baking and whatnot. ‘Tis the Xmas season! Speaking of work, one of my students this morning wanted to say “I’m really sorry,” but what came out of her funny mouth was “Sorry davvero” (davvero means “really” in Italian). Yes, this was another merry teaching day. Oh dear, I just noticed that parts of my keyboard have turned yellow. Will I ever get the curcumin stains out? Hmmm.
Anyway, back to serious stuff. A friend (thank you!) sent me a case study published in 1980 and titled “Multiple myeloma and adult celiac disease.” It discusses the case of a 75-year-old woman with multiple myeloma (a bone marrow biopsy or BMB revealed 80% malignancy), a resident of Wisconsin, who “was admitted to the hospital because of diarrhea and abdominal pain.” She had had this kind of trouble for “25 years prior to admission.” So had a few close relatives. Her intestinal woes vanished after she began a gluten-free diet.
Keeping in mind that this study was written 27 years ago (!), let’s read the following: “The appearance of malignity in patients with celiac disease has been well described and several theories have been offered in explanation. An abnormal immune surveillance allowing for the development of a malignant clone of cells is most popular. Proponents of this theory cite the various studies demonstrating a defect in the immune apparatus, such as a reduction in the number of ‘T’ cells or immunoglobulins, or demonstrating a defect in immune function, such as impaired response to mitogens or reduced cytotoxicity. Other explanations include inherent genetic predisposition (celiac patients with malignancy have a higher frequency of having the histocompatibility antigens HLA-A1, HLA-B8, and HLA-B12), and the accumulation of dietary carcinogens because of the lack of detoxifying enzymes and appropriate cell turnover in the small bowel mucosa.” Hmmm. Detoxifying enzymes, eh? I must look into this when I have more time (hah!).
Further on, “Multiple myeloma, a malignant conversion of an immune functioning cell, had not been reported in association with celiac disease. It is tempting to speculate that chronic antigenic stimulation in a patient with abnormal immune response resulted in the plasma cell dycrasia. In patients with multiple myeloma who have persistent, unexplained diarrhea or steatorrhea, endoscopy and biopsy are indicated to rule out amyloid or celiac disease.”
Plasma cell dyscrasia, by the way, is a group of diseases characterized by the proliferation of a single clone of plasma cells. This clone produces a huge amount of a single antibody, or monoclonal antibody, known as M-protein. Multiple myeloma is part of this group and so are other plasma cell malignancies, such as Waldenstrom’s macroglobulinemia. And MGUS. I think it’s always good to review this stuff (sometimes I forget specifics, too!).
I don’t know if I have gluten intolerance. I certainly don’t have any of the harsh symptoms that I have seen described here (and there). But I want to take the antigliadin antibody test just to rule it out. Like Web Admin, I had a terrible diet for years, especially in college and grad school, when I couldn’t be bothered with cooking. I ate a lot of pasta and chemical-ridden sweets. Tons of gluten, in other words. At any rate, if it turns out that I have the slightest intolerance to gluten, I don’t think it would hurt for me to send it into exile forever. Even if my myeloma markers don’t decrease. Okay, I have more errands to run, so off I go! Ciao a tutti!
Hi Margaret,
I wish for you and your family a wonderful Christmas and a healthy, happy new year! Take care, Donna
Hi Margaret,
Just to say that I had no serious symptoms of celiac’s either – other than stomach inflammation occasionally. With something like this you get accustomed to the syptoms because you have lived with them for so long.
Cutting out gluten completely is not easy. I’ve just read that it is used in tablet preparations and is even found in the glue on the back of stamps.
It’s amazing that the paper you quote is 27 years old and no-one has followed it up.
Paul
We sat here side-by-side reading your posts on our laptops.. and came to the reference to codfish cookies similtaneously
.. You must have heard us laughing together all the way over in Florence.
I have MGUS, and I have been found not to have celiac disease (by duodenal biopsy and blood antibody tests). However, I WAS found to have the DQ8 gene, which is one of the two major genes that causes celiac disease, as well as a plethora of autoimmune problems which I also have. It may be that if I had a fecal antibody test (Enterolab does it) that it might show antibodies in the gut. I’m still thinking about having that done. Anyway, 2 doctors have said I should avoid gluten because of this gene, so I have gone gluten-free.
Another MGUS patient on our ChooseHope.com MGUS forum recently found out that she has a minor gene that can cause gluten sensitivity, and the fecal antibody test was positive even though her blood antibody tests had been negative! She, too, has started a gluten-free diet.
I wonder how many of us with MGUS or MM would test positive for one of the genes that cause celiac, and positive for at least the fecal antibody test. The problem is that if doctors do the blood antibody tests, and they are negative, they generally stop right there, and do not investigate the genetic possibilities, and fecal testing. I was lucky in that my gastroenterologist is a world-reknown figure in celiac research, and he realized that I had an unusual cluster of autoimmune illnesses, osteoporosis, and liver inflammation that are very typical of celiac disease, so he pursued the issue further than most would have done.
The following message is not in any way connected with so-called research on celiac disease. It is completely personal and anecdotal, and you may think I’m nuts. I have been a celiac for over 20 years. Classical reaction to all the culprits: wheat, barley, malt etc. – violent diarrhea! Awareness, care, and my own food preparation generally kept me out of trouble.
Five months ago, reading up on an urelated issue, I began taking curcumin (turmeric) as a supplement. One 720 mg cap daily.
One month later I ingested food that turned out to contain wheat flour as a prominent ingrdient, and awaited the customary violent reaction. Nothing happened! My curiosity aroused, I decided to experiment with gluten-containing foods, progressively more dangerous: pizza, hamburger buns, cinnamon rolls, bran muffins — and dougnuts, which had been particularly cruel to me in the old days. — Nothing has happened. Last night I had lassagna for dinner. Nothing happened. No diarrhea. My other diet and food supplement habits have not changed. On Jan. 9 I reported my experience to the ‘Society of Intestinal Research’, seeking out Dr. Alessio Fesano. I asked “Is it possible I have surrendipitously unearthed a’cure’ for celiacs? I am 88 years old , and have no ‘agenda’, nor any expectation of recognition or reward”. Their responses were not very supportive , and I doubt very much that they will check this out. What do you think? Morris Simons
7-17-11
Hello,
I want to share that I was diagnosed with MGUS last year, after several medical concerns over about 10 years, that indicated my immune system was weak, but all tests were negative as to cause. I was smashed up in a school mini-bus accident in 1981, and was left with many neuromusculouskeletal damages; additionally, the medications eroded my stomach, causing GI problems. I always attributed all my medical difficulties to that accident. It was a workers comp case, so I was not allowed timely treatment or any income over the next three years, nor informed of the extent of all the damage. I only found out the total extent in 2002.
Following a foodpoisoning from a fast food last year, the labs showed I (and a friend) ingested some kind of human virus or bacteria at the restaurant. Then I was sickened by the intense GI anti-bacterial/viral/parasitic medications, in May 2010. Then I developed Oral thrush in June, and the med I was given, Nystatin Oral suspension, put me into 2nd degree hypertension and cerebral stroke-heart event occurred in the ER, after 9 days’ use of ingestion. Again the immune system was implicated in my contracting the Oral Thrush from the 2nd anti-parasitic medication I was given in late May , when I collapsed at work.
Afollowup cardiology appointment consisted of a treadmill test, that I couldn;’t perform because of gut pain and trouble moving my legs. They recorded that I refused, but it turned out it was the bowel obstruction growing preventing me from running the cardiac treadmill. They were annoyed with me for not taking the test. I insisted I don’t have a heart condition , and that GI problems were occurring preventing it. They did not believe me!
After all that, in late June, I went to a rheumatologist to find out why my immune system was weak. His blood test showed possible MGUS and he immediately sent me to Hema/Onc. The oncologist-hematologist repeated the test, and diagnosed MGUS in July 2010, telling me there was no cure, and they didn’t know where it came from. He then informed me it could develop into myelomas, bone cancers, lymphoma or leukemia. But they would do a yearly blood test to monitor it, but that’s all I was offered in the way of treatment or explanation. I wasn’t happy with that and pushed further. He described the M-protein aspect of MGUS, and drew me a diagram of what the red blood cells looked like with MGUS ( the one strand that raises up from the wall of the Red blood cell). I had to find out more, and find a cure… Just by chance, as I was researching MGUS and M-proteins online, I stumbled onto Celiac intolerance information right as I was watching a local natural medicine news program that was discussing it, and decided to try a gluten-free diet. Within weeks, I lost inches from my waist and other areas of fat also thinned out. My neuromuskuloskeletal conditions improved, and have remained much, much less active. I lost thirty pounds from April 2010 to March 2011. But I have gained some back.
Unfortunately I also had an abdominal adhesion that had resulted in an undetected small bowel obstruction and impaction that caused me to need a liquid diet starting October 2010, to March 2011. It was finally detected in the hospital in December 2010, but not removed. I waited until March of this year, when I was emergency hospitalized again and the adhesion and appendix were removed. It was a nine inch adhesion, that was probably there since a GI procedure in 2008. The gluten free diet that I had been on since July 2010, prior to the obstruction situation becoming more acute probably saved my life, by preventing the inflammation that may have led to an intestinal perforation and sepsis. It (gluten free diet) probably saved my life. After a food poisoning, harsh medicines, heart attack and stroke, MGUS and bowel obstruction all within 6 months, it is amazing I’m alive.
I had the MGUS test repeated in May 2011 and the numbers are now within normal range! I am upset that none of my doctors were aware of the Celiac-MGUS relation, and if I had not done my own digging would likely be dead right now. I did get laid off from my job, in March, probably because of how much I was out sick in a year(3 long term leaves). I know have unemployment and no medical coverage but after a year of being Gluten free, my improving health, and I don’t anticipate any acute intestinal problems, blood clots and do believe I am reversing the MGUS with this diet. I’m staying on it.
I was very surprised to see that there is an established theory on the Celiac Intolerance-MGUS relation going back at least 6 years, and am annoyed that my doctors in Long Island, NY, did not know about any of this! At least my PCP took my lead and did not try to dissuade me;it’s in my medical records now. So far all tests for Celiac are negative, including a painful endoscopy in August 2011 following the stroke and heart event, but my positive health reaction from the GF diet, has convinced my PCP and the surgeon, and I recently informed the cardiologist’s office. The GI, unfortunately, implied that I was psychologically impaired and that there was no GI problems!. The other doctors disagreed with his opinion.
I will likely stay on a GF diet forever. I’m finding more GF food in my area, and I’m eating healthier than I ever have before. I don’t get sick after I eat now, or lose my appetite when I cook, as I always did I the past. I’m still healing from the adhesion lysis/appendectomy laparoscopy surgery of March 2011, but should continue to improve every day. It was great to eat solid food after 6 months of ensure and boost! According to the hospital tests, my immune system was back to normal in December 2010 and March 2011.
I have to share this; if it helps one person it’s worth it, but I think it will help more. MJH