A topic that has been discussed recently on a couple of websites, that is, Cancer Compass (http://tinyurl.com/2daxza) and Beating Myeloma, is the celiac disease-myeloma connection. There are a ton of studies on celiac disease, also known as gluten intolerance. According to this one (abstract: http://tinyurl.com/2hk8jj), it is: “an autoimmune inflammatory disease of the small intestine that is precipitated by the ingestion of gluten, a component of wheat protein, in genetically susceptible persons. Exclusion of dietary gluten results in healing of the mucosa, resolution of the malabsorptive state, and reversal of most, if not all, effects of celiac disease. Recent studies in the United States suggest that the prevalence of celiac disease is approximately one case per 250 persons.” Now, I grew up in Italy on a pasta diet. I LOVE pasta and cannot imagine my life without it. But this topic concerned me enough to buy some gluten-free pasta and think about going on a gluten-free diet at some point early next year. Let’s have a look at a few of these studies.
A study (abstract: http://tinyurl.com/2hfhgz) published in “Leukemia Research” in December of 2006 points out that “it is well known that in sera of some patients with intolerance to gluten, with celiac disease, the IgA or IgG immunoreactivity to gliadin, and elevated levels of IL-6, could be present too.” Gliadin is a glycoprotein (a carbohydrate plus a protein) found in wheat, oats, rye, barley and other cereals.
Now, this is very interesting. Let’s see: 1. Gluten intolerance is associated with high levels of IL-6. But people with celiac disease also have high levels of IL-1beta, which strongly induces IL-6. Not good. 2. The immunoglobulins IgA and IgG are involved in the immune system reaction to gliadin. What a coincidence, huh? Hmmm.
This study is the first to report “that antibodies from some M-component could be directed to gliadin antigens.” Even though more research is needed, multiple myeloma could possibly be a “more severe form of gluten intolerance than celiac disease,” connected to our immune system’s reaction to gliaden antigens. In other words, those who have this particular food intolerance could possibly and eventually develop myeloma. Did I understand this correctly??? I am almost at a loss for words.
Another excerpt: “As IgA or IgG antigliadin immunoreactivity found in sera of patients with celiac disease is diminished in patients on gluten-free diet (GFD) and by some antibiotics, it could be of importance to consider whether the same approach in patients with MM (and with antigliadin immunoreactivity), applied at the end of conventional therapy would stop myeloma progression.” How about that? Go on a gluten-free diet, as some myeloma and MGUS folks in my acquaintance already have, and see if that is enough to stop myeloma from progressing. Who knows?
Another 2006 study, published in “Aging Clinical and Experimental Research (full study: http://tinyurl.com/ythyfm), tells us that “Although lymphoproliferative disorders and intestinal tumors are the most commonly seen malignancies, many other malignancies including multiple myeloma may develop.” The study examines the specific case of an elderly patient who was eventually diagnosed with celiac disease, after 15 years of diarrhea and other symptoms. “In our case, failure of diagnosis despite 15 years of symptoms played an important role in the development of malabsorption-related complications such as anemia, electrolyte imbalance and osteoporosis, as well as multiple myeloma.” I noticed a rather curious thing: the abstract tells us that the patient had plasma cell dyscrasia but not myeloma; then the full study states that the patient was diagnosed with early-stage myeloma. Odd. Oh well. Point is, though: this study affirms that myeloma may develop in patients with celiac disease.
A 1990 German study (http://tinyurl.com/yrlfa3) examined the fate of 52 people diagnosed with celiac disease: 15% of them developed cancer, including one case of myeloma. A 2004 Irish study (http://tinyurl.com/28gkm9), titled “Celiac Disease and Malignancy,” looked at 77 patients with celiac disease. One had myeloma. Interesting statistics, if nothing else. Could there be a gluten intolerance connection for some of us? Isn’t it worth at least getting tested?
Concluding remarks: I recall having an array of allergy tests done several years ago, and I distinctly remember that I was not allergic to wheat (etc.). But things change, so I am going to ask my haematologist what she thinks about it. After all, a simple blood test can determine if one has the antigliadin antibodies. Easy peasy!
It is important to note that there is more than one test for gluten intolerance. The first test I had involved measuring IgA but the result was inconclusive because, like most people with IgG MGUS, my IgA levels are too low.
I’ve been to see my hematologist today and had my Anti-gliadin antibody test, so I should know next week. All I can say at the moment is that I’ve been on a gluten free diet for 4 months now, I feel miles better and lots of minor problems have cleared up.
I’m not sure if it will be possible to cure MGUS/MM by going gluten free because some B cells have “memories” that last for years. However, it can’t do any harm to take away an antigen that is continually stressing your immune system.
Hi Paul, as you live in the Uk, I must ask you this….how did you manage to get the Anti-gliadin test done? Did you specifically request it, or did your GP recommend it? As you have been Gluten free for 4 months, would that affect the result, do you know?
I fell off the gluten-free diet after about 2 days – just forgot and ate some toast. I haven’t got much in the way of self discipline.
Will you have any regular blood test results to report soon?
Sorry Margaret, dont mean to invade your space, but there is something here every day, and it’s obvious that lots of people read your blogs. Cancer Compass isn’t as active as your blog.
In light of the recent finding [ref] on our (MMer’s) genetic predisposition resulting in an impaired ability to neutralize environmental toxins I see celiac disease as a potentially sufficient source of toxins. That means it could be part of a sufficient but not necessary causal toxic recipe. In other words, if you are not genetically predisposed then celiac disease will not lead to MM. If you are predisposed then it might. Looking at the professions with correlation to MM I see those most likely to vector toxins directly into the systemic circulation – those involving high levels of air borne toxins. Celiac or leaking gut or other similar digestive disorders flood the systemic circulation with toxins. My ND (Naturopathic Doctor) started with repair and enhancement of my digestive system – first and foremost. This involved a very restrictive diet which eliminated all the major known allergens. (nuts, wheat, shellfish, soy…) It was a month long regimen which slowly added back in the allergens one at a time while watching my reaction closely to each addition.
I think the general perception that MM is of heterogeneous origin fits with a predisposition followed by countless vectors that could lead to MM. It is obvious that if you have an allergen (like wheat gluten) and MM then you should definately avoid it. Remember allergens can take on many forms: the packaging your food comes in, cosmetics and soaps, fumes, or even the food you eat (or what’s pesticide is on that food).
That being said I doubt eliminating the toxin will cure MM, but it clearly won’t hurt or it might be necessary but not sufficient. If you want your therapy to most effective eliminate the toxins.
Enough rambling for one morning.
Hi everyone, please please please DO invade my “space,” since this discussion is of the utmost interest to me, too. Dora, my gut feeling is that 4 months would not make a huge difference. Like Paul, I read about our B cells having “memories.” And, like Paul and L.P. Cells, I doubt that going gluten-free can cure MM, but hey, I agree with both of you that it certainly cannot hurt. On the contrary!
As for me, my IgA is too low to yield a result, so I am going to ask for the anti-gliadin antibody test. I think it’s called AGA in English.
Have a great weekend, everyone! And eliminate some toxins, while you’re at it! 😉
Hi Dora and all,
I’ve replied to you via the other BB but, for the interest of others, I will reply on this one too.
Yesterday I saw my haematologist at a London teaching hospital, I gave him a copy of the Serbian research paper that Margaret has referred to above, and I asked him for an AGA test. The test GPs normally use is the IgA test which is unsuitable for us.
I understand that AGA antibodies circulate in the system long after you go gluten-free. However, I sneaked a plate of fish (gluten in the batter) & chips on Thursday just to make sure. The meal did give me some stomach pains but it might have been worth it:-). Otherwise, I have done my best to stay gluten free for most of the 4 months and, even in that short time, I have noticed some significant physical benefits. So, whatever the result of the tests next week, I will probably stay on a gluten free diet.
I have to say that at the moment I am secretly hoping, but not expecting, to see an improvement in my paraprotein levels. Strangely, no one seems to have put going-GF to the test, despite the Serbian research paper. Unfortunately, the Turkish study in “Aging” does not say what happened to the woman’s early stage MM after she had been on a GF diet although her celiac problem improved.
Don has recently gone GF and witnessed some improvements in his last blood results but he has attributed the benefits to other things.
One of the most compelling pieces of evidence that it might be possible to reduce paraprotein levels has come from a remarkable lady I have been corresponding with called Cath. Since most of her story is in the public domain, I don’t think she will mind me repeating it here. Cath suffered from diverticultis before being diagnosed with MM. Chemo made her digestion problem considerably worse although it eventually got better after an op. Over 3 years, Cath had various treatments for MM but she became so ill after 4 months on Velcade that she had to go into a hospice for a month. For 3 months she could not eat anything and lost 50kg in weight BUT her serum paraprotein dropped to single figures. Cath is currently doing well on Revlimid but is thinking about going GF because she has had the same problem with head sweats that I used to have.
In my opinion this discussion is very important indeed because I don’t think it will be possible to cure MM until you find out what has caused it. LPC makes some very good points that we are all different and any allergen or toxin involvement is likely to be different for each one of us. However, although the sample was regrettably small, the Serbian study suggested that gluten was an issue for 35% (6/17) of the people they studied. I also believe that any digestive problem: celiacs, chrons, ibs, leaky gut, etc. has the potential to cause or aggrevate MM/MGUS. And, as LPC’s ND realised, you have to cure your digestive system first if you want any other remedies you are taking to be absorbed properly.
I’m gluten intolerant and eat a gluten-free diet. This means eating a diet of mostly unprocessed foods. Gluten lurks in the unlikeliest places – in soy sauce and in bleu cheese, for two!
I agree with Paul that people who are gluten-intolerant, by eliminating gluten from the diet, will avoid unnecessary stress on the immune system and will also better absorb nutrients in the small intestine from foods and supplements. Eating the right foods is one thing; absorbing them is quite another matter.
Can I ask you if you discovered you were gluten intolerant before you were diagnosed with MGUS/MM? Has changing your diet affected your blood results?
I discovered that I was gluten-intolerant about two years before being diagnosed with MM. I immediately felt better after excluding gluten from my diet. I used only nutritional therapies for three years after diagnosis. I can’t say that avoiding gluten improved my labs in any way. I wish it weren’t so. Maybe that won’t be the case for you.
I am an MGUS patient. I have a lot of the issues that plague adult celiacs, so this past winter I went to Dr. Fasano to ask to be tested. First he did all the blood antibody tests: there are several of them. These were negative. However, my case history was so strongly indicative of a possible gluten problem, that he sent me for the celiac HLA gene typing. Indeed, it turned out that I have the DQ8 gene (DQB1*0302) which is one of the two major genes that causes celiac disease. Then he ordered an endoscopy with biopsies. These showed I don’t have celiac disease– yet. It can appear at any time of life if one has this gene.
Then I said to him, since I do have the DQ8 gene (which is known to cause multiple autoimmune diseases, most of which I have, and neuropathy, which I also have) is there any possibility that going gluten-free could keep my autoimmune diseases from getting worse, and possibly prevent the last couple of them (diabetes, and MS) from also appearing? His reply: “Gluten causes a lot more things than just celiac disease.”
So I went gluten-free. Since then, a neurologist has also registered the opinion that my neuropathy is the result of the DQ8 gene, and that I should avoid gluten. So I will remain on this diet for the rest of my life, and hope that it will at least mitigate to some degree my lupus – CREST – Hashimoto’s – Sjogren’s overlap syndrome, and prevent the onset of two more: LADA (Latent Autoimmune Diabetes of Adults), and MS (Multiple Sclerosis), both of which can also be associated with DQ8.
I also wanted to say that if one has been gluten-free for months, I was told by Dr. Fasano’s nurse that one must force gluten for 2 months before having the antibodies done! Otherwise you will most likely have a wasted, false negative result.
As for blood antibody testing being sufficient on its own, I think it is not. Consider my own case in which blood antibody testing was clearly negative, but I turned out to have a gene that can cause celiac disease at any time. Also in some cases where blood antibodies are negative, Enterolab’s fecal antibody test can show positive results, showing gluten sensitivity. I have not had this done, but since I have already gone gluten-free, there’s no point in doing it.
On the other hand, consider the case of Marjie, on ChooseHope’s MGUS forum. Since she posted her case on ChooseHope’s public forum, I’m sure she won’t object to my repeating it here. She was having symptoms indicative of a gluten problem. All her blood antibody tests turned out negative. So she contacted Enterolab, and was sent the kits for taking cheek swab, and fecal samples for the celiac HLA gene typing, and the fecal antibody tests. Other HLA tests check only for the two major genes that can cause celiac disease: DQ2 and DQ8. However, Enterolab checks also for some of the minor genes that can also be associated with gluten sensitivity. Her HLA typing was positive for one of those minor genes, and her fecal antibodies test also turned out positive for anti-gluten antibodies! She too has now gone gluten-free!
I wonder how many of us, would turn out positive for fecal anti-gluten antibodies even if our blood anti-gluten antibodies are negative! It’s something to think about. It’s also possible that in response to gluten, DQ2 &/or DQ8 produce other antibodies that we have not yet identified, that may be more closely connected to the same inflammatory pathways found in the autoimmune diseases and multiple myeloma.
I wanted to reply to this particular thread as I am also IgG Kappa Mgus. I eliminated soy and gluten and in 6 months my M-Protein dropped 50% and my elevated liver enzymes returned to normal for the first time in over 10 years!!!! I too am IgA deficient and the Celiac test came back false negative. After genetic testing I also carry those genes and refused a scope…I don’t need any more evidence that Gluten (and possibly soy) are not good for anyone with autoimmune or Mgus conditions. Best of luck to everyone…now I hardly think of my Mgus and just live my life. Diagnosed Mgus in 1998. Fibromyalgia, ME, Endometriosis, PCOD, Autoimmune Hepatitis, MCS, Spondylosis, CVID.
Katherine: Do you know what your blood type is? Are you a Type A or a Type O? The Eat Right 4 Your Blood Type guy says that soy is actually really good for Type A’s, which I am, so I still have a lot of it. His cancer book even says that soy may actually be life saving for Type A’s, which goes against all the other anti-soy sentiment out there. I have given up the gluten, but I’ve been a big tofu eater for 30 years or so now and would hate to give it up. It’s so hard to know what is healthy to eat any more.
I did read that book and yes I am type “A” blood. I was a Vegan for many years and then Vegetarian and finally in last few years added back Turkey, Chicken, occasional fish. I don’t believe tofu is as big a concern, its the soy beverages that are in question and I have tofu occasionally but I was drinking two large glasses of Soy per day. I switchened to Almond breeze. I don’t eat cheese or dairy except for feta and goat cheese or Daya (it’s non dairy, looks like cheese and melts like cheese but veg. based) I am following Dr. Furhmans Nutritarian lifestyle and find this to be the best for me so far….he believes the “Salad” is the meal and you can eat as much as you like of veg and fruit…eventually your body settles and you eat as much as you need. At the beginning it is wonderful as I can eat extra fruit which satisfies those first few days on this plan. If your numbers have risen or changed it is good to think back to anything you may have added (food wise) or changed or eliminated. Stress also proves to be a big factor in my Mgus numbers. I am just grateful every day that I have not progressed and will try to do the best I can every day to stay healthy.
Hello Katherine. I’ve also read Dr. Fuhrman’s books and am a big fan of his. Though I also read Dr. Mark Hyman and his way of eating is more in line with what my system seems to need, being pre-diabetic, I need more protein. But bravo to you for bringing down your numbers following Fuhrman’s path, I think it can only be beneficial for most people.
Your diagnoses sound like mine, I also have MCS, Fibromyalgia and Chronic Fatigue (you say it ME, so you must be English?).
My numbers are rising, despite being on a homeopathic regimen, so I’m a little mystified as to what to do next. Chelation I think, to rid of heavy metals. But I’m not averse to doing the Fuhrman plan if it’s been helping you and my system can tolerate it. Everything in his book made so much sense when I was reading it. Would you like to e-mail privately to discuss it further? I have an old friend in Wales who was recently diagnosed as diabetic and I told her about Eat to Live and she embraced it wholeheartedly and now is no longer diabetic and also lost all her excess weight!