celiac disease and myeloma connection?

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celiac disease and myeloma connection?

by photog on Wed Oct 17, 2007 12:00 AM

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We recently discovered that my wife, who has myeloma, also has celiac disease (gluten intolerance) which leads to damage of the lining of the small intestine if gluten is eaten. This results is malabsorption of nutrients and vitamins. The interesting piece of information is that celiac disease is the result of IGA and IGG antibody responses to gluten. Could celiac disease, in some people, lead to an uncontrollable production of IGA and/or IGG immunoglobulins resulting or contributing to myeloma? Could controlling celiac disease help treat myeloma? I do know - especially in North America - that celiac disease is far under diagnosed and that thousands unknowingly have the disease.

Anyway ... these are my questions, so if anyone has any further knowledge or ideas on this subject please post.

Regards,

Craig 

RE: celiac disease and myeloma connection?

by bommommy on Wed Oct 17, 2007 12:00 AM

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On 10/17/2007 photog wrote:

We recently discovered that my wife, who has myeloma, also has celiac disease (gluten intolerance) which leads to damage of the lining of the small intestine if gluten is eaten. This results is malabsorption of nutrients and vitamins. The interesting piece of information is that celiac disease is the result of IGA and IGG antibody responses to gluten. Could celiac disease, in some people, lead to an uncontrollable production of IGA and/or IGG immunoglobulins resulting or contributing to myeloma? Could controlling celiac disease help treat myeloma? I do know - especially in North America - that celiac disease is far under diagnosed and that thousands unknowingly have the disease.

Anyway ... these are my questions, so if anyone has any further knowledge or ideas on this subject please post.

Regards,

Craig 


Interestingly enough, my mother has multiple myeloma and my husband has celiac disease, recently diagnosed in both cases.  My mother (age 87) definitely does not have celiac disease and my husband (age 68) does not have multiple myeloma.  My husband's celiac disease portrays itself in a rather uncommon way - through something called dermatitis herpetaformis ... not through the typical stomach problems, but it's celiac disease/gluten intolerance nevertheless.  You are right about it being under-diagnosed, at least in the United States, from what I have heard.

RE: celiac disease and myeloma connection?

by photog on Wed Oct 17, 2007 12:00 AM

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Thanks for posting. I'm wondering that if someone has a genetic pre-disposition to myeloma and develops celiac if it can "set the ball in motion" for the development of MM. At the very least if one has MM and is diagnosed with celiac ... you certainly don't want to delay sticking to a strict non-gluten diet. It would by seem to be risking adding fuel to the fire.

Thanks again.

Craig 

RE: celiac disease and myeloma connection?

by roadrunner on Thu Oct 18, 2007 12:00 AM

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You pose an interesting question.  Not only is celiac disease underdiagnosed, but some people cannot even get tested for it.  I saw a gastro. doctor who refused to order blood tests for it.  I was later diagnosed with MM and still have not been checked for celiac.  Hopefully, someone will provide an answer for you.

RE: celiac disease and myeloma connection?

by photog on Thu Oct 18, 2007 12:00 AM

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Wow.My occupation is as a Director of Research for a traumatic brain injury rehabilitation company, so my mind is geared toward putting pieces of a puzzle together and something is telling me that there is a connection between celiac disease and myeloma for some (not all) people. Could be that they happen simultaneously due to the same underlying problem or that one precipitates the other, for example, that celiac could increase the chances of contracting myeloma. Also, the idea that a 100% gluten-free diet might be recommended for people with myeloma to decrease the over expression of immunoglobulins.

Thanks for posting and I'll keep digging. :-)

Take care.

Craig

RE: celiac disease and myeloma connection?

by Celiac_Mom on Thu Oct 18, 2007 12:00 AM

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I believe There may be a Connection. My husband was diagnosed with Celiac disease (too late) in December 02 in February 03 had a perforation of the bowel - 2 times both were fixed but that is when They found cancer (T-cell lymphoma).  He died in March 03 and his autopsy showed cancer throughout his entire body.  He was sick for over a year until they found the Celiac.

 Both of my children have since Tested positive and are doing well on the GF diet.  Good luck and keep us posted.

Dawn

RE: celiac disease and myeloma connection?

by photog on Thu Oct 18, 2007 12:00 AM

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Thank you very much for posting. I am very sorry to hear of your husband's passing. In Italy they test ALL children for celiac and 10% test positive. In the US it almost unheard of unless it is initiated by the patient or family.

Take care.

Craig 

RE: celiac disease and myeloma connection?

by Pirate_Gen on Thu Oct 18, 2007 12:00 AM

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I have been wondering about this connection for about 2 years.  (You may find my posts sprinkled around the net).  My father, aunt and grandfather all died from MM, although I was told that there was no familial connection.  My half-sister was diagnosed with Celiac and then I discovered I also have it.  My father had many symptoms of gluten intolerence, although I didn't realize it until I quit eating gluten and the symptoms we shared in common, pretty much disappeared.  I did find an extract of a study that was done in Europe where they concluded there was a relationship, but I have not seen any evidence of any further research.

I'm not sure why gluten intolerence, which has been known about for many years, has been so ignored by the medical community.  I thank God my family doctor retired and I had to switch to my husband's.  If I hadn't, I might have suffered for another twenty years. I had become so used to the symptoms that I didn't even realize they were not normal until they were gone.  I know my father suffered from many mystery ailments, long before he was diagnosed with MM and since the symptoms were the same as my gluten symptoms, I can only assume he had it as well.

 Since I had been told there was no genetic component to MM in 2001 and am now discovering all kinds studies are being done in this area, I now refuse to take "no" as an answer.  I have already started a letter writing campaign requesting the research bodies that are studying this disease undertake further investigations into the relationship between gluten and MM.  By the way, gluten sensitivity has been linked to various lymphomas, so I do not think it is too much of a stretch to think that there may be epigenetic damage from the inflammation caused by the gluten reaction.  (For more information on this line of thought, check out Nova's Ghost in Your Genes, Epigenetic Therapy at  http://www.pbs.org/wgbh/nova/genes/issa.html )

Good luck with your quest and best wishes to your family.

RE: celiac disease and myeloma connection?

by photog on Thu Oct 18, 2007 12:00 AM

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Very, very interesting information. I know about research that celiac is correlated with some other cancers, but I think they are missing the MM connection. It also criminal that the American medical community hasn't paid enough attention to celiac like Europe and in particular Italy.

Keep up the fight and please post any further information or developments on this subject.

The very best to you and your family.

Craig 

RE: celiac disease and myeloma connection?

by Sky_Kim on Fri Oct 19, 2007 12:00 AM

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I have noticed a connection between myeloma and celiac disease for three years.  I have a complex medical history, having been diagnosed with systemic lupus with an MS and RA overlap, Ehlers-Danlos Syndrome (classical type), spasmodic torticollis (dystonia), von willebrand's disease, suspected secondary amyloidosis, hyperthyroiditis, and suspected neuroendocrine tumors.  Three years ago doctors at UCI medical school suspected early stage amyloidosis or early stage myeloma.  I had severe bone pain, low grade fevers, bright red palms and neck, and abnormalities in the blood suggestive of either disorder.  I had an abnormal Bence-Jones test, elevated serum beta amyloid protein, and my red blood cells fracture and disintegrate in the test tube.

My hematologist at UCI asked if there were any cases of amyloidosis or myeloma in my family.  He said sometimes amyloidosis is suspected before the myeloma.  I said that I had a great aunt who died at 54;  she was diagnosed with multiple myeloma just six weeks before her death.  After the conversation I went to the medical library at the school and started pulling up articles on myeloma and amyloidosis.  I saw a correlation between the two, and also having longstanding systemic lupus.  I saw some article out of Europe noting a relationship between celiac disease and myeloma.  That caught my eye because when I was a baby and young child, I had constant diarrhea and a lot of vomiting.  Doctors told my parents they thought perhaps I had cystic fibrosis or celiac disease.  No further testing has ever been done.  I have noted that my lupus flares after eating things like whole wheat bread or tabbouleh salad.  I rarely eat bread or pastries because I don't feel well after, and have IBS.

 I saw a nutritional study on line done in Australia where a researcher noted a correlation between celiac disease and secondary amyloidosis and myeloma.  His hypothesis was that if you take away the trigger to your allergic response, the immune system is no longer stressed, and the blood cancer goes into remission.  I have been trying to find the article again and can't

 Anyway, I am in an N.I.H. study on Ehlers-Danlos syndrome, which is being conducted in Baltimore, MD.  They really wanted me in the study because I have the entire gamut of things that can happen with Ehlers-Danlos.  The head researcher in the study believes that faulty collagen formations in the body are more "immunogenic," leaving a person wide open to develop any number of autoimmune disorders.  I saw a posting on the study that there is a higher incidence of celiac disease amongst people with Ehlers-Danlos, and a higher incidence of people with EDS who develop myeloma.  Bingo.  The light bulb in my head lit up again.

Last month I flew back to Baltimore again to see a fellow researcher in the EDS study, who is head of the Harvey Institute of Human Genetics.  She used to be a chief NIH researcher and is brilliant and compassionate.  We went over my complicated medical history, and she wanted to know if there was anything else we might be missing.  I told her about the fact that I had constant diarrhea and vomiting for the first eight years of my life and doctors thought it was possibly cystic fibrosis or celiac disease.  I told her I was never tested for either.  She said she had a new diet sent to her that day for people with celiac disease.  I mentioned that I felt there was a myeloma connection with celiac disease and wondered why no one was researching it.  I spouted off my theory, and she told me to email my theory to her.

She wrote me an email last week saying she is very interested in my hypotheses, and she wants me to write them out and provide any documentation I can find showing the correlation between celiac disease and myeloma.  She is coming here to San Diego next week to the geneticists' convention, and I am hoping to have the info for her.  She says she will shop the idea around the NIH if I can come up with the hypotheses and a sampling info from medical literature supporting the idea that there is a link between myeloma and celiac disease.

 This past week I found an article that states there is a higher incidence of people with systemic lupus, rheumatoid arthritis, MS, or thyroiditis or goiter who also have celiac disease.  The other medical condition that shows up with celiac is lymphoma.  Another study indicated that there were too many people diagnosed with lymphoma before they were diagnosed with celiac disease for it to be coincidental.  The same study said they noted that if a person with celiac disease sticks to a gluten-free diet for at least five years, his or her chances of developing lymphoma go back to that of the average population.  In other words, people who eat gluten regularly when they have celiac disease are at risk for lymphoma.  Take the gluten out of the diet and you can control the lymphoma.  My "gut" feeling -- no pun intended -- is that the same thing applies for myeloma as well.

What has struck me in my studies, and having lived with these things, is that lupus is the classic autoimmune disease.  RA and thyroiditis and MS are all autoimmune diseases as well.  The plasma cell, which is the problem area in myeloma, is the critical first step in the body's immune system/response to allergens.  If you eat something consistently that is causing a low grade autoimmune response, I imagine the immune system gets over worked and become misguided in its efforts to try to "heal" the body.  The IgA question brought up by Craig is a good one, and something I have thought about as well. 

 In the early stages of getting my lupus diagnosed, a doctor performed a skin biopsy on the arm and back.  The results showed elevated IgA, IgG, but especially IgA.  I chronically have elevated IgA and very low IgM in blood studies.

My family history on my mother's side is interesting.  Everyone complained of having IBS and having to be careful about what they eat or they get the runs.  One of the cousins just died of lymphoma.  I think my maternal grandmother may have had lymphoma -- her abdomen was loaded with cancer, and there were so many tumors that her doctor didn't even know where her cancer started.  Being in a small hick town, the doctor never did labs on it.  She was constantly suffering from belly aches and the runs from the time she was a small child.  She also had a massive goiter, as did three of her sisters.  Many of her "people" complain of arthritic pain, and arthritis with a strange rash.  My belief is that it is celiac disease, and no one has ever had the money or the right medical help to figure it out.  I saw a study last week indicating there is a higher population of celiacs coming out of Ireland than other populations.  The ratio was 1-2 in 300.  My mom's family came from Ireland where they had been for many generations before coming here.  They were dirt poor and lived off homemade bread and homemade noodles, which were every day staples.  Thus, the gluten allergy connection

 If you have any information to share, I would truly appreciate it now that I have the ear of a famous geneticist willing to shop the idea around NIH. 

Sheila C.

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