Multiple Myeloma And Celiac

[Robie]

i am a 59 year old women diagnosed with celiac disease. i have been gluten free for almost 3 years. my 91 year old father has had many celiac symptoms in his life but has never been tested for celiac. he now is suspected to have multiple myeloma. could there be a connection between this and untreated celiac? asking his doctor has not gotten me anywhere because he doesn't think it matters at this point. but i would like to know for my self and my siblings who have not been tested. is this is something that i should worry about in my future even though i stick strickly to a gluten free diet. and could it help him by going gluten free now. would there be any benefit at all to get him tested at this point? thanks for the help.

[ravenwoodglass]

It certainly wouldn't hurt him to be gluten free and might very well help guite a bit as far as his general strength and immune system. As to the issue of MM and celiac what I would do is do a seach with the terms 'multiple myeloma and celiac'. There will be a lot that comes up. From what I understand when we are compliant with our diets many of our cancer risks go down after 5 years.

[cyberprof]

It certainly wouldn't hurt him to be gluten free and might very well help guite a bit as far as his general strength and immune system. As to the issue of MM and celiac what I would do is do a seach with the terms 'multiple myeloma and celiac'. There will be a lot that comes up. From what I understand when we are compliant with our diets many of our cancer risks go down after 5 years.

Robie, I'm sorry about your dad's diagnosis. Feel free to PM me if you have questions. Read my signature for my story.

I just found this connection a couple weeks ago. I believe that there is a connection: However MM and celiac are each not very common (and together are very rare) so it's unlikely you'll find a medical test study or research to 100% confirm it.

I am convinced that going gluten-free might help keep the "bad" myeloma cell level from increasing by reducing the immune response to gluten. It would certainly be something for your gluten-eating siblings to consider.

Here are some relevant articles and websites:

There is an interesting study by Juranić Z, Radic J, Konic-Ristic A, Jelic S, Besu I, Mihaljevic B. on the web at http://www.ncbi.nlm.nih.gov/pubmed/1651

[shayesmom]

I'm sorry to hear about your Dad. I lost mine to cancer less than 3 years ago (he was only 60). It's not a situation to be envied.

I have seen message boards where myeloma patients are making that connection. Some have gone gluten-free (and dairy-free) and have seen improvements.

Here's a link to one of the threads I've been following (don't ask why....I tend to go off on tangents with my research). There are studies cited and there is an interest in the medical community to pursue this.

http://www.cancercompass.com/message-board...all,17150,0.htm

[CCM]

Thanks so much for this thread! I had no idea there were connections being made between these two diseases. I think that my grandmother died from MM when I was a young child. I am going to have to go back and check. That link to Cancer Compass is really good.

[ellen123]

My mother is 81 and was diagnosed a couple of years ago with MGUS (monoclonal gammopathy), a precursor stage to multiple myeloma. She goes for blood checkups every 6th months and next month, she will ask them to test her for celiac disease. I don't know for certain whether I have celiac disease myself but I diagnosed myself as gluten intolerant through research of my symptoms and immediate improvement of symptoms on a strict gluten-free diet. Now that I'm gluten-free, I don't want or need to be tested for celiac disease, and I am debating whether to have myself tested for MGUS or the gene for MM. Since there is no known treatment for MGUS, at least according to my mother's doctor, and since I'm already gluten-free, can anyone think of a reason to know for sure whether I have MGUS or am genetically predisposed to get MM? Other than to make sure my Will is up to date, that is. . . .

How many of you worry that genetic testing will give the insurance companies even more ways to kick us off their policies, deny health insurance claims, and/or deny coverage based on "pre-existing conditions"?

Ellen

[cyberprof]

Now that I'm gluten-free, I don't want or need to be tested for celiac disease, and I am debating whether to have myself tested for MGUS or the gene for MM. Since there is no known treatment for MGUS, at least according to my mother's doctor, and since I'm already gluten-free, can anyone think of a reason to know for sure whether I have MGUS or am genetically predisposed to get MM? Other than to make sure my Will is up to date, that is. . . .

Ellen

Ellen, I'm not sure that there is a gene for MM. If there is research or if you've read about it please post the info. The last I read stated that scientists think that some but not all MM is genetic but I was not aware that they've found the gene as they have in celiac.

I would say, yes, have your blood screened for MGUS but only if you don't want to apply for life insurance etc. in the future. My hubby's oncologist said it's good to know about MGUS early because if (and that's a BIG if) it turns into MM you can catch it early. Current statistics show that only 1.5% per year of MGUS patients convert to myeloma, so many people never get full MM, thankfully. And if you're gluten free you're doing a lot to keep it from turning into MM.

~Laura

[ellen123]

Ellen, I'm not sure that there is a gene for MM. If there is research or if you've read about it please post the info. The last I read stated that scientists think that some but not all MM is genetic but I was not aware that they've found the gene as they have in celiac.

Laura- Actually I think you're right -- I may have been thinking about the article by Dr. Hallie Davis recommending that MGUS and MM patients be tested for the celiac genes (as well as their first degree relatives) -- not the other way around. I don't know of any research on identification of a gene for MM or MGUS. If I do learn more about it, though, I'll post it. As often seems to be the case, it takes the patients to educate themselves and they in turn educate their doctors. My mother's primary care physician knows almost nothing about MGUS and was surprised to hear about the gluten research. I'm curious to find out next month whether my mother's oncologist, who periodically monitors her blood, knows any more.

Ellen

[Robie]

thank you all for your concerns and replies. there is so much to learn and i can only hope more research is done so that we can have definitive answers. i know that's asking a lot.

[MareMare]

I'm new to this site and I'm not sure if anyone is still following this thread. My mom was diagnosed with MM 4yrs ago. She has celiac dease, she refuses to treat,  she also has hashimotos. I did get her to go gluten free for a little while and she felt better,  her numbers came down some and she refused cemo (steroids only). She won't stay gluten free no matter how much pain it causes. Cut to this week she went to her doctors appointment, eating gluten again btw, her numbers were up and she must start cemo again. I believe there is a connection. Does anyone know if there is any more information  I can read on this?

[cyclinglady]

19 hours ago, MareMare said:

I'm new to this site and I'm not sure if anyone is still following this thread. My mom was diagnosed with MM 4yrs ago. She has celiac dease, she refuses to treat,  she also has hashimotos. I did get her to go gluten free for a little while and she felt better,  her numbers came down some and she refused cemo (steroids only). She won't stay gluten free no matter how much pain it causes. Cut to this week she went to her doctors appointment, eating gluten again btw, her numbers were up and she must start cemo again. I believe there is a connection. Does anyone know if there is any more information  I can read on this?

I am sorry about your mother.  She is an adult and there is not much you can do but offer encouragement.  But you can take care of yourself and any children or siblings you might have.  Get tested for celiac disease and keep getting tested throughout your life (it can develop at anytime).  It is just a simple blood test.  

Have your doctor check for MGUS.  In celiac disease testing, they check Immunoglobulin A (IgA). In the case of celiac disease, it is a control test to verify a celiac test like the TTG IgA, EMA IgA or DGP IgA.  If you are low in IgA, all your celiac IgA tests would be invalid and your doctor would look at IgG tests for a diagnosis.    If your Immunoglobulin A (IgA) is high (out of range a lot), you might  have MGUS which can lead to MM (like 1% chance each year of developing it over a 20 year period).  There is no treatment for MGUS.  Just a wait and watch for MM.  It is RARE for it to develop into cancer.  So, I would not worry even if you have it,  unless you are an untreated celiac or have other autoimmune disorders that are not managed.  

MGUS is linked with autoimmune disorders (like celiac disease).  These explain it well:

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By not managing her celiac disease, your mother has probably made her MM either develop or worsen.  Just a theory on my part and I am not a doctor.   Just from personal experience, these are all part of the Hypersensitivity (immune) system and they can each impact each other.  

I hope your mother decides to treat her celiac disease.  Perhaps she is depressed (another celiac disease symptom) and talking or getting medical assistance may be helpful.