celiac disease and myeloma connection?

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RE: celiac disease and myeloma connection?

by photopaul on Tue Jul 01, 2008 12:00 AM

Quote | Reply

 

On 7/1/2008 poppy/cath wrote:

Great news Paul!!  Hopefully they will now develop some way for us to take the IRF4 and we may all be cured!!  Wouldnt it be fantastic!!  I couldn't understand the first site, but I've printed the second - and read it - and hope that it will be acted upon by those in the know.

If you have answers to our common problems I'd love to hear about them.  Just out of interest, where are you based?  Many thanks, Cath

Hi Cath,

As I understand it, we need to block IRF4 & IL-6 because they both promote Myeloma. Maybe if we are allergic to gluten, and this raises IRF4, we have a connection to MM.

I am based in the UK Cath. If you are still having a problem with head sweats, send me an email on

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

. I think I might have the answer.

Best wishes,

Paul

 

RE: celiac disease and myeloma connection?

by poppycath on Tue Jul 01, 2008 12:00 AM

Quote | Reply
Out of curiousity Paul, how did you manage to send your email address on this site??  I've sent an email response, but I'm just interested.  Thanks, Cath

RE: celiac disease and myeloma connection?

by photopaul on Tue Jul 01, 2008 12:00 AM

Quote | Reply

 

On 7/1/2008 poppy/cath wrote:

Out of curiousity Paul, how did you manage to send your email address on this site??  I've sent an email response, but I'm just interested.  Thanks, Cath

No idea Cath. I just typed it in.

Paul

RE: celiac disease and myeloma connection?

by Debbie_G_3 on Mon Jul 07, 2008 12:00 AM

Quote | Reply

 

On 11/15/2007 grateful101 wrote:

 

On 10/23/2007 Casamagorical wrote:

i am so amazed at what I  am reading.... gluten intolerance related to MM!! I was diagnosed with multiple myeloma two and a half years ago. My results were not good and I was told I needed immediate treatment. I refused because the diagnosis gave me an answer to the many health problems I had been having over the previous five years, such as peritonitis and fungal infections etc. I wanted to help myself first and get nutritionally fit! I changed my diet and lifestyle and now my results are a lot better, my consultant thinks it is a miracle!!( I can send my programme to anyone who is interested). One of the things I have cut out of my diet is sweet foods... biscuits, cakes and white bread.... all containing gluten!  I still have pasta and wholemeal bread.. I am going to cut these out too and see if that improves my condition. I am very excited, thank you. I should add I also have amyloidosis,  I have many of the symptoms, but my consultant says this is nothing to do with MM, although there is so much research to show they can be related... and my GP ( family doctor) says what good would a positive diagnosis do!!! I have found many CAM remedies for this which have helped amazingly. Also although i have worked hard to understand my illness and treat it my consultant refuses to talk about my programme because it isn't conventional medicine!!! she prefers to call my improved condition a miracle!! I am looking forward to discussing the probable link between MM and gluten intolerance!!

Please would you send me the diet programme you are using.  I have MGUS and abdominal  probs too, many thanks ~ Debbie

 

RE: celiac disease and myeloma connection?

by Perri3 on Mon Dec 14, 2009 03:02 AM

Quote | Reply

On Oct 17, 2007 12:00 AM 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 

Kim, Craig, and others asking this question, which is basically "What do these other things have in common/have to do with................(Celiac, other diseases)?

I wonder, too, so am sending the letter below to other boards, too:

Hello to all,

I belong to several support boards but am not active on them due to lack of free time, or becuase I no longer seem to have that issue or was misdiagnosed.

But there are these same nagging "Is there a connection?" queries that OVERLAP on different boards, and mutiple sympathetic replies on all of them. I would like to learn more, and so am asking people from each board to share, and letting them know the others are asking, too.

Maybe something will come up so often researchers will have to take a deeper look!  I'll bet there are more related questions/medical issues than we know enough about to wonder yet.

Here's my story, a jumble of seemingly unrelated issues, with odd overlap of cause or effect:

I have all kinds of autoimmune diseases in my family, 2 myself. One of them, Perinicious Anemia, destroys the cells that make stomach acid, and due to a feedback hormonal connection, raises the level of the hormone gastrin in the blood...which raises the risk of stomach cancer and lymphoma.

It has been suggested that I have Crohn's of the stomach and small intestine, but biopsies are negative. Antibodies are borderline for celiac. That could most likely mean I don't have it, yet eating wheat makes me feel sick.

Biopsies and labs for celiac could also be negative, instead, because I eat an ALMOST gluten-free diet; still I do that because even a week of eating wheat makes me achy, sore, exhausted, swollen, forgetful, etc. along with the intestinal stuff. Longer than that and I start catching more flu, colds, etc. back to back, it feels like.

********************************************

Meanwhile a complaint about bone pain led to tests for abnormal proteins in the blood, particularly Multiple-Myeloma-related "precursor" or "marker" proteins. They showed I have the "precursor protein" in my blood, though not at a high level, and my bones and blood are okay. It is presumed to be dormant, as any other signs of problems I have, such as bone pain and fatigue, are caused by or can be caused much more typically by other things.

I read that the "myeloma protein" is also seen with a few other closely related cancers, such as lymphoma.

****************************************

The interesting thing is that I recently discovered I have Ehlers-Danlos Syndrome, and this is a rare inherited disorder with several sub-types involving weakness of connective tissue. Circus-performer flexibility and other issues are seen in EDS. There are several sub-types. It is not progressive.

People on that board have been wondering about Celiac Disease and/or Inflammatory Bowel Disease, and an Ehlers-Danlos Syndrome connection!  They keep seeing it come up more and more in personal stories about both issues.

**********************************************

Twice I have had a routine EKG and have been told it looked like I had a "Q Wave"--an abnormal sign of, most likely, a heart attack. A silent heart attack I didn't realize was happening. I have a lot of chronic pain which I have to ignore, so that seemed very possible. But each time, follow-up testing showed some abnormalities of chamber size or thickness, a leaking valve, but nothing severe and no clear sign of a heart attack at all!

I did some research and found that certain problems with the heart valves or vessels can occur with EDS, and result in the type of chamber and tricuspid valve changes I have in mild form. Those changes are among the fairly rare other causes of an abnormal Q Wave. (Though, for the medical people, in a different EKG "lead".)

"Heart-attack tests" (Thallium scan, treadmill) came up mostly normal otherwise. That hasn't been followed up yet, to see if the EDS might be the cause. Either way, I read that the cause of these most recent changes must be found while it IS still mild.

Both my mother and grandmother had more than one "silent" heart attack.

******************************************

Then I learned I have an inherited immune deficiency called CVID. Some types of these deficiencies can make a person more vulnerable to chronic bacterial overgrowth in the digestive tract, which I have had, and rare bacterial infections (or common germs but in rare places), which I've also had. Like Strep infection in the lower digestive tract, which caused a huge life-altering abcess that left me with a permanent injury.

*********************************************

Interestingly, there is a germ that most of us swallow at times, and stomach acid/the immune system together usually kill it off. It's called "H. Pylori", and it can live there for years, too, undiscovered and causing acid overproduction and chronic irritation. For some reason, it also raises the risk of B-Cell Lymphoma, just like Celiac disease does.

As for how it raises the acid production? Don't know--but the reason Pernicious Anemia (which I AND my Mom have) does is that antibodies against the self--our stomach wall, specifically--damage the wall of the stomach, killing certain cells that allow us to absorb vitamin B12---and also cells that make stomach acid. The body responds by sending out more gastrin, the hormone that tells the body to produce stomach acid. High blood levels of gastrin raise the risk of cancers in the digestive tract, lymphoma, and I can't recall what else.

I wonder if how H. Pylori causes the acid overproduction is that it stimulates gastrin levels in the blood--a known risk for stomach and other digestive cancers.

**********************************************

It has been noted that children with CVID have an very high amount of "bovine milk proteins" in their blood. (cow's milk!---???). I couldn't find more yet about cow protein in human blood--is that like the Celiac-related "Leaky Gut Syndrome"?  Or totally unrelated?

I have read that 2 things which have been known to cause elevated levels of the multiple Myeloma precursor protein is  having a foreign object in the body, or a transplant.  Mine appeared after I had had a large piece of bovine (cow) connective ligament tissue grafted to my spine, to tack up my internal pelvic organs (which sagged becuase of the EDS weakness).

I don't know whether I had the MM protein before, since I was never tested.  But the level of the precursor dropped gradually down to almost none, six months after the graft had been fully absorbed. 

Now if it just doesn't trigger autoimmune disease--I was on the edge of my seat about that more than the MM risk, let me tell you. There's too much of it in my family, and it has caused devastation.

***********************************************

I almost died from Mono at age 7, when I got it just days after standing next to someone being tested with SOMETHING like live weakened virus to check for antibodies to see if he was a carrier. No one can tell me the details of the test, but I was told it had some "live" Mono germs in it. They thought it was coincidence, but...?

Interestingly, "Chronic Epstein-Barr" (mono) has been linked to some cancers and chronic fatigue syndrome. The cancers include thyroid, and I THINK Non-Hodgkin's Lymphoma. There is plenty of argument on both sides about the CFS.

*********************************************

One of the germs that can infect people with CVID more easily or often, or in weird places, is Strep, and I must have gotten Strep Throat a thousand times! I got lots of ear infections and pneumonia, too, but who knows what those germs were. I was almost done in by a kidney infection when I was 5, and by 8 weeks of pneumonia at age 6.

The Japanese reported about 25 years ago that they believe Rheumatoid Arthritis and some other autoimmune diseases are caused by strep infections so mild as to go unnoticed, but which still attract confused attention from our immune system, which then attacks our own tissues in that place or tissues of the same kind elsewhere in the body. (I don't know whether more or opposing evidence has come along since then--gotta read up soon!)

We already know that DOES happen to the heart or kidneys or both after untreated strep throat infections cause that same confusion. In that case, permanent damage may be done, sometimes severe damage.

*********************************************

In any case Pernicious Anemia, which I have, is the end result of the immune system's confusion about the stomach lining. I also have Interstitial Cystitis, also a fairly rare disease. It affects the bladder lining and the urethra, and it is very painful, causing burning pain similar to a bladder infection....and bladder spasms. It is incurable.

When I eat wheat, I have twice as many bladder spasms.

There was one lone maverick doctor who reported that the symptoms of a bladder infection really ARE an infection, but one that is buried deep in the bladder walls, and won't grow in the culture gel they use to check for ordinary bladder infections, most of which are caused by intestinal bacteria (E. Coli, etc.)

Guess which germ he had in mind, and swore he cultured out with special liquid culture mediums (germ-growing fluids)?  And claims he successfully treated with very long treatment with penicillin?

Strep!!

**********************************************

Okay....we need a diagram here with colored overlapping wedges or lines, or blocks.

antibodies

celiac

gastrin

pernicious anemia

lymphoma

Epstein-Barr

thyroid

EDS

Myeloma

cow's milk protein in the blood

tissue transplants and MM protein

strep (usually a respiratory or skin or wound infector)

immune deficiency CVID

unusual infections or odd lower-likelihood places

lupus, IC, PA, Vitligo, Hashimoto's Thyroiditis, other autoimmune diseases, antibodies to certain glands, etc.

multiple-sclerosis-type lesions in the brain of 2 relatives, explored with many, many tests, still undiagnosed.

........Doesn't it just...give you that tip-of-the-tongue feeling??

*******************************************

So I am going to post this one on the EDS, MM, CVID, Celiac and Inflammatory Bowel Disease boards, asking those people to send me information, and what they have (meaning any of these or ANY automimmune disorder,including hormonal, in the immediate families...or any disorder where these others were mentioned as related).

I'll ask what is still undiagnosed but about which they have heard serious speculation of them by a doctor, like me and the Crohn's I've heard at least 20 times. It turned about to be EDS plus CVID, but the overlapping of symptoms and (especially) signs is important.

I'm too tired to go into the further connection, but add these too, as long shots:

unexplained seizures, ADD/ADHD,

chronic fatigue/fibromyalgia, prolonged shift work or sleep deprivation,

chronic unexplained potassium deficiency along with mild cyclic edema (3-10 lbs.) in women.

multiple miscarriages.

COPD, asthma, allergies

Rheumatic Fever, heart valve disease

Type I diabetes, especially adult-onset Type I

Please add your gender, the age when your problem seemed to have started, and your ethnicity if you like.

Please be sure to put the "not sure about Uncle Ed, but I think so" members in a separate category...and be fairly sure, or it must be a strikingly unusual set of signs/complaints if they had no clue what it was and still don't.

Questions you want me to add to take to other boards welcome, too.

*********************************************

This will be a massive undertaking if I get lots of responses, so if you answer, please, PLEASE send any personal notes or experiences separately from the statistical answers, or repeat them in the story, but send them again separately, as I will have a folder just for the numbers.

Thank you for your help!!

Perri

RE: celiac disease and myeloma connection?

by Perri3 on Mon Dec 14, 2009 03:25 AM

Quote | Reply

On Dec 14, 2009 3:02 AM Perri3 wrote:

On Oct 17, 2007 12:00 AM 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 

Kim, Craig, and others asking this question, which is basically "What do these other things have in common/have to do with................(Celiac, other diseases)?

I wonder, too, so am sending the letter below to other boards, too:

Hello to all,

I belong to several support boards but am not active on them due to lack of free time, or becuase I no longer seem to have that issue or was misdiagnosed.

But there are these same nagging "Is there a connection?" queries that OVERLAP on different boards, and mutiple sympathetic replies on all of them. I would like to learn more, and so am asking people from each board to share, and letting them know the others are asking, too.

Maybe something will come up so often researchers will have to take a deeper look!  I'll bet there are more related questions/medical issues than we know enough about to wonder yet.

Here's my story, a jumble of seemingly unrelated issues, with odd overlap of cause or effect:

I have all kinds of autoimmune diseases in my family, 2 myself. One of them, Perinicious Anemia, destroys the cells that make stomach acid, and due to a feedback hormonal connection, raises the level of the hormone gastrin in the blood...which raises the risk of stomach cancer and lymphoma.

It has been suggested that I have Crohn's of the stomach and small intestine, but biopsies are negative. Antibodies are borderline for celiac. That could most likely mean I don't have it, yet eating wheat makes me feel sick.

Biopsies and labs for celiac could also be negative, instead, because I eat an ALMOST gluten-free diet; still I do that because even a week of eating wheat makes me achy, sore, exhausted, swollen, forgetful, etc. along with the intestinal stuff. Longer than that and I start catching more flu, colds, etc. back to back, it feels like.

********************************************

Meanwhile a complaint about bone pain led to tests for abnormal proteins in the blood, particularly Multiple-Myeloma-related "precursor" or "marker" proteins. They showed I have the "precursor protein" in my blood, though not at a high level, and my bones and blood are okay. It is presumed to be dormant, as any other signs of problems I have, such as bone pain and fatigue, are caused by or can be caused much more typically by other things.

I read that the "myeloma protein" is also seen with a few other closely related cancers, such as lymphoma.

****************************************

The interesting thing is that I recently discovered I have Ehlers-Danlos Syndrome, and this is a rare inherited disorder with several sub-types involving weakness of connective tissue. Circus-performer flexibility and other issues are seen in EDS. There are several sub-types. It is not progressive.

People on that board have been wondering about Celiac Disease and/or Inflammatory Bowel Disease, and an Ehlers-Danlos Syndrome connection!  They keep seeing it come up more and more in personal stories about both issues.

**********************************************

Twice I have had a routine EKG and have been told it looked like I had a "Q Wave"--an abnormal sign of, most likely, a heart attack. A silent heart attack I didn't realize was happening. I have a lot of chronic pain which I have to ignore, so that seemed very possible. But each time, follow-up testing showed some abnormalities of chamber size or thickness, a leaking valve, but nothing severe and no clear sign of a heart attack at all!

I did some research and found that certain problems with the heart valves or vessels can occur with EDS, and result in the type of chamber and tricuspid valve changes I have in mild form. Those changes are among the fairly rare other causes of an abnormal Q Wave. (Though, for the medical people, in a different EKG "lead".)

"Heart-attack tests" (Thallium scan, treadmill) came up mostly normal otherwise. That hasn't been followed up yet, to see if the EDS might be the cause. Either way, I read that the cause of these most recent changes must be found while it IS still mild.

Both my mother and grandmother had more than one "silent" heart attack.

******************************************

Then I learned I have an inherited immune deficiency called CVID. Some types of these deficiencies can make a person more vulnerable to chronic bacterial overgrowth in the digestive tract, which I have had, and rare bacterial infections (or common germs but in rare places), which I've also had. Like Strep infection in the lower digestive tract, which caused a huge life-altering abcess that left me with a permanent injury.

*********************************************

Interestingly, there is a germ that most of us swallow at times, and stomach acid/the immune system together usually kill it off. It's called "H. Pylori", and it can live there for years, too, undiscovered and causing acid overproduction and chronic irritation. For some reason, it also raises the risk of B-Cell Lymphoma, just like Celiac disease does.

As for how it raises the acid production? Don't know--but the reason Pernicious Anemia (which I AND my Mom have) does is that antibodies against the self--our stomach wall, specifically--damage the wall of the stomach, killing certain cells that allow us to absorb vitamin B12---and also cells that make stomach acid. The body responds by sending out more gastrin, the hormone that tells the body to produce stomach acid. High blood levels of gastrin raise the risk of cancers in the digestive tract, lymphoma, and I can't recall what else.

I wonder if how H. Pylori causes the acid overproduction is that it stimulates gastrin levels in the blood--a known risk for stomach and other digestive cancers.

**********************************************

It has been noted that children with CVID have an very high amount of "bovine milk proteins" in their blood. (cow's milk!---???). I couldn't find more yet about cow protein in human blood--is that like the Celiac-related "Leaky Gut Syndrome"?  Or totally unrelated?

I have read that 2 things which have been known to cause elevated levels of the multiple Myeloma precursor protein is  having a foreign object in the body, or a transplant.  Mine appeared after I had had a large piece of bovine (cow) connective ligament tissue grafted to my spine, to tack up my internal pelvic organs (which sagged becuase of the EDS weakness).

I don't know whether I had the MM protein before, since I was never tested.  But the level of the precursor dropped gradually down to almost none, six months after the graft had been fully absorbed. 

Now if it just doesn't trigger autoimmune disease--I was on the edge of my seat about that more than the MM risk, let me tell you. There's too much of it in my family, and it has caused devastation.

***********************************************

I almost died from Mono at age 7, when I got it just days after standing next to someone being tested with SOMETHING like live weakened virus to check for antibodies to see if he was a carrier. No one can tell me the details of the test, but I was told it had some "live" Mono germs in it. They thought it was coincidence, but...?

Interestingly, "Chronic Epstein-Barr" (mono) has been linked to some cancers and chronic fatigue syndrome. The cancers include thyroid, and I THINK Non-Hodgkin's Lymphoma. There is plenty of argument on both sides about the CFS.

*********************************************

One of the germs that can infect people with CVID more easily or often, or in weird places, is Strep, and I must have gotten Strep Throat a thousand times! I got lots of ear infections and pneumonia, too, but who knows what those germs were. I was almost done in by a kidney infection when I was 5, and by 8 weeks of pneumonia at age 6.

The Japanese reported about 25 years ago that they believe Rheumatoid Arthritis and some other autoimmune diseases are caused by strep infections so mild as to go unnoticed, but which still attract confused attention from our immune system, which then attacks our own tissues in that place or tissues of the same kind elsewhere in the body. (I don't know whether more or opposing evidence has come along since then--gotta read up soon!)

We already know that DOES happen to the heart or kidneys or both after untreated strep throat infections cause that same confusion. In that case, permanent damage may be done, sometimes severe damage.

*********************************************

In any case Pernicious Anemia, which I have, is the end result of the immune system's confusion about the stomach lining. I also have Interstitial Cystitis, also a fairly rare disease. It affects the bladder lining and the urethra, and it is very painful, causing burning pain similar to a bladder infection....and bladder spasms. It is incurable.

When I eat wheat, I have twice as many bladder spasms.

There was one lone maverick doctor who reported that the symptoms of a bladder infection really ARE an infection, but one that is buried deep in the bladder walls, and won't grow in the culture gel they use to check for ordinary bladder infections, most of which are caused by intestinal bacteria (E. Coli, etc.)

Guess which germ he had in mind, and swore he cultured out with special liquid culture mediums (germ-growing fluids)?  And claims he successfully treated with very long treatment with penicillin?

Strep!!

**********************************************

Okay....we need a diagram here with colored overlapping wedges or lines, or blocks.

antibodies

celiac

gastrin

pernicious anemia

lymphoma

Epstein-Barr

thyroid

EDS

Myeloma

cow's milk protein in the blood

tissue transplants and MM protein

strep (usually a respiratory or skin or wound infector)

immune deficiency CVID

unusual infections or odd lower-likelihood places

lupus, IC, PA, Vitligo, Hashimoto's Thyroiditis, other autoimmune diseases, antibodies to certain glands, etc.

multiple-sclerosis-type lesions in the brain of 2 relatives, explored with many, many tests, still undiagnosed.

........Doesn't it just...give you that tip-of-the-tongue feeling??

*******************************************

So I am going to post this one on the EDS, MM, CVID, Celiac and Inflammatory Bowel Disease boards, asking those people to send me information, and what they have (meaning any of these or ANY automimmune disorder,including hormonal, in the immediate families...or any disorder where these others were mentioned as related).

I'll ask what is still undiagnosed but about which they have heard serious speculation of them by a doctor, like me and the Crohn's I've heard at least 20 times. It turned about to be EDS plus CVID, but the overlapping of symptoms and (especially) signs is important.

I'm too tired to go into the further connection, but add these too, as long shots:

unexplained seizures, ADD/ADHD,

chronic fatigue/fibromyalgia, prolonged shift work or sleep deprivation,

chronic unexplained potassium deficiency along with mild cyclic edema (3-10 lbs.) in women.

multiple miscarriages.

COPD, asthma, allergies

Rheumatic Fever, heart valve disease

Type I diabetes, especially adult-onset Type I

Please add your gender, the age when your problem seemed to have started, and your ethnicity if you like.

Please be sure to put the "not sure about Uncle Ed, but I think so" members in a separate category...and be fairly sure, or it must be a strikingly unusual set of signs/complaints if they had no clue what it was and still don't.

Questions you want me to add to take to other boards welcome, too.

*********************************************

This will be a massive undertaking if I get lots of responses, so if you answer, please, PLEASE send any personal notes or experiences separately from the statistical answers, or repeat them in the story, but send them again separately, as I will have a folder just for the numbers.

Thank you for your help!!

Perri

I should have added, for Craig, who mentioned IgA and IGg elevationsin Celiac disease aka Non-trpocial Sprue, aka Gluten Enteropathy, aka Gluten Intoleranbce.

My IgA is the one that is mildly elevated sometimes on a nearly gluten-free diet. The doctors have shrugged and said, well, the Igg is low (plus the endomysial ---ummm, is that endomesial?--antibody, against the intestinal lining, triggered by gluten).

It turns out that I have deficiency of SOME of the Igg subtypes, and that would affect the test results. I've done some reading up and there is another test--gotta check my notes--which can help clarify a confusing result.

As you said, Crag, Celiac Disease raises the risk of intestinal and a few other cancers.

And I forgot to add that Igg deficiencies raise the risk of autoimmune disease and malignancies of many kinds--including lymphoma, and --not 100% sure--myeloma.

Again, there's this feeling the answer is...right...there...somewhere--if we could just ask the right question!

Which you all are doing. It will come out through discussions like these.

Perri

 

 

RE: celiac disease and myeloma connection?

by Jubyanne on Tue Jun 29, 2010 01:29 AM

Quote | Reply

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.

Have you found out any more information about the celiac/myeloma connection?

I have multiple myeloma diagnosed in 2008. I'm now on a second round of chemo, Revlimid, and after running into these emails, I've started on a gluten free diet. After only four days of feeling much better, no bloating and stomach pain, I accidently got into some wheat. Oh, boy! All afternoon, all night and into the next morning I had real bad abdominal pain and finally diarrhea. Don't know whether this is conclusive, but enough to keep me on the diet. If this can really help with my myeloma, wonderful, if not, it does help with my tummy! Testing is going to have to be genetic, because I will not go back on gluten.

RE: celiac disease and myeloma connection?

by Twinkles on Wed Sep 05, 2012 11:38 AM

Quote | Reply

It is now 2012, the last entry is from 2010. I am curious as to how the gluten free diet and MGUS/MM situation is? Are there new studies, is something new known?

If you are following a gluten free diet, is your MGUS/MM stable or has it even gotten better, or, hopefully not, has it gotten worse?

If you know of research studies in regards to the gluten intolerance/celiac/ MGUS/MM connection, would you share them with me?  There was one once that suggested IGA to be connected in some way, I am particularly looking for this one study, but I would be very happy about any others as well.

Thank you,

Twinkles

RE: celiac disease and myeloma connection?

by Paulk on Wed Sep 05, 2012 12:23 PM

Quote | Reply

Hi Twinkles,

I think you are on the right track with IgA. Originally I tried a gluten free diet and it helped for a while. Then I discovered that our digestive system plays an important role in our immunity. I am sure that I read somewhere that c90% of our IgA is made in the gut. If your gammopathy is IgG then it is likely that your IgA wil be depleted. However, I have not been able to establish how serum monoclonal IgG is able to suppress levels of IgA in the digestive system.

Six months ago I decided to try to supplement the low levels of IgA in my digestive system with colostrum & lactoferrin (from cow's milk). So far this seems to have worked very well. I can now eat gluten again without any problems and my paraprotein dropped by 15% the last time it was tested.

Another connection between MGUS/MM and the digestive system might be due to amyloidosis. Green tea will help to prevent this.

Best wishes,

Photopaul

RE: celiac disease and myeloma connection?

by Freddie8511 on Thu Sep 06, 2012 04:16 AM

Quote | Reply

Dear photoq,  My husband has MM.  He said to look up what he had me say to Amypa in discussion "Husband has possible MM".  Freddie says everything is processed, bleached, sterilized, and causes many diseases.  He also had me write about it on our discussion of chemo vs. stem cell transplants so look up those discussions and hope this can help your wife.  Freddie's Wife

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