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Multiple Myeloma


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13 replies to this topic

#1 AVR1962

 
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Posted 12 February 2012 - 08:53 AM

My grandmother has been diagnosed with multiple myeloma. As I am reading thru the information everything sounds like my own health except my calcium level did go down when I went on a gluten-free diet. I am planning on asking my doctor to test me for my own peace of mind. However, I was wondering if anyone knows about multiple myeloma and knows if there is a connection to celiac?
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

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#2 IrishHeart

 
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Posted 12 February 2012 - 11:21 AM

There are a few articles I have seen discussing MM and celiac as I was researching it for a friend years ago who had MM--just google it and see what you find.

ETA: Research articles like Pub Med.

Honestly, though, almost ANY AI disease could have a potential
link to celiac and having celiac disease is not necessarily a pre-determinating factor that you will develop it. I have seen articles while researching celiac disease for 4 years suggesting a link to nearly every disorder under the sun. :unsure:
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 cyberprof

 
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Posted 12 February 2012 - 04:35 PM

My grandmother has been diagnosed with multiple myeloma. As I am reading thru the information everything sounds like my own health except my calcium level did go down when I went on a gluten-free diet. I am planning on asking my doctor to test me for my own peace of mind. However, I was wondering if anyone knows about multiple myeloma and knows if there is a connection to celiac?


Yes, there is some connection. Not all celiacs get MM (multiple myeloma) and not all MM patients are celiac but there may be a link. I've posted on it a lot here...do a search for the official PubMed type articles that I researched.

****Important***** You should tell your grandmother to get tested for celiac.

The most telling article was the observation that on a gluten-free diet, some (but not all) MM patients will go into remission. My hubby has indolent (dormant) MM and he is on a gluten-free diet and his blood work has been steady for 5+ years.
  • 1
Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#4 cyberprof

 
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Posted 12 February 2012 - 04:38 PM

Here's the link that I posted that has a lot of articles and information.

http://www.celiac.co...oma-and-celiac/

Also, MM is not a death sentence as it was 10 years ago when my husband was diagnosed. Treatments are much better.
  • 1
Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#5 AVR1962

 
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Posted 13 February 2012 - 12:01 AM

Yes, there is some connection. Not all celiacs get MM (multiple myeloma) and not all MM patients are celiac but there may be a link. I've posted on it a lot here...do a search for the official PubMed type articles that I researched.

****Important***** You should tell your grandmother to get tested for celiac.

The most telling article was the observation that on a gluten-free diet, some (but not all) MM patients will go into remission. My hubby has indolent (dormant) MM and he is on a gluten-free diet and his blood work has been steady for 5+ years.

Thank you, and IrishHeart, for your replies. I will check out those links. The real bad thing about all this with my family is they almost think celiac and wheat intolerence is a joke. Family members have made posts on FB about thinking they might have gluten intolerence and then realized they were just fat. I have had some tell me that they heard a speaker on the radio and how all my symtoms sounded just like what they were talking about but it doesn't get thru to them that others in the family may also be effected. My dad has arthritis and I found an article stating wheat causes inflammation in arthritis and sent it to him. He said he cut enough out of his diet and if he beleived evrything he read he would have nothing to eat. When my Gma first went into the hospital one of my adult daughters was with her and docs before they started testing. My daughter asked docs to test her for celiac. As soon as my mom heard this she rolled her eyes. The doc agreed to test but I never heard the results. I did hear there was intestinal damage but no one seems to be paying attention to that.

My Gpa died just a year ago and when he was sick but had not found out yet what it was that was cauing the problems he was dizzy all the time, probably the last 2 years of his life. Oddly, then when I got sick I too was dizzy for 9 months, every day all day and it stayed that way until I was able to get a grip on gluten-free diet. When I finally did, it was a matter of 4 weeks off gluten and my dizziness stopped. My family knows this but I don't think they made the connection to Gpa. My adult daughters and grandchildren are on gluten-free diets, even their husband are on gluten-free diets and all doing so much better. I quite honestly feel celiac runs thru my whole family. I went to a family reunion this summer and as my family members were eating at our planned picnic I was just watching in disbelief as what appeared to me as my family membrs killing themselves on gluten. If I tell my story to my family, they will say things like, "I am sure glad I don't have that problem." They do not listen so I gave up.
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#6 IrishHeart

 
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Posted 13 February 2012 - 06:39 AM

I am in the same boat, hon. :(

Try repeatedly to get family members to see it is hereditary.

Try to get them to see that all of their AI diseases (thyroid, diabetes, cancer, asthma, arthritis, MS, Crohn's, gall bladder --no one has one of those left--anemia)and various health issues (obesity, depression , anxiety) are relevant. It is gluten, people! :rolleyes:

They think I am the only with it!

I say..."No, I am just the FIRST ONE TO BE DXed with it." This is genetic!

My Mom (age 85) is the only one to listen. She went gluten-free and feels great. Sadly, it is too late for my Dad. I see now that all of his health problems screamed celiac. Ironically, while he was dying is when mine triggered for good and caused massive complications for 3 years and nearly killed me.

We can inform them all---but we cannot make them do it. I think one has to be as sick as we were to "get it".
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 AVR1962

 
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Posted 13 February 2012 - 11:14 PM

I am in the same boat, hon. :(

Try repeatedly to get family members to see it is hereditary.

Try to get them to see that all of their AI diseases (thyroid, diabetes, cancer, asthma, arthritis, MS, Crohn's, gall bladder --no one has one of those left--anemia)and various health issues (obesity, depression , anxiety) are relevant. It is gluten, people! :rolleyes:

They think I am the only with it!

I say..."No, I am just the FIRST ONE TO BE DXed with it." This is genetic!

My Mom (age 85) is the only one to listen. She went gluten-free and feels great. Sadly, it is too late for my Dad. I see now that all of his health problems screamed celiac. Ironically, while he was dying is when mine triggered for good and caused massive complications for 3 years and nearly killed me.

We can inform them all---but we cannot make them do it. I think one has to be as sick as we were to "get it".

Sad, isn't it IrishHeart! My mom got so upset with family this past year for trying to help my Gma with vits and supplements, she has been slowly losing her health since Gpa passed. She told me that vits and supplements were nothing but JUNK, caps in her email! Thank goodness for herbs and vits and homeopathic thinking as medicine just does not cut it sometimes. At this point docs are now saying that if Gma is released from the hospital she is going to have to go into a nursing home. So so sad. So much could be prevented if one would just open their mind to the possibilities.
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#8 beachbirdie

 
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Posted 30 March 2012 - 11:27 AM

...The doc agreed to test but I never heard the results. I did hear there was intestinal damage but no one seems to be paying attention to that...



Blood testing may not be useful when multiple myeloma is involved. MM can depress the immunoglobulins, as I just found out with my mother. She is very low in serum totals of both IgG and IgA, which renders any celiac testing invalid.

If your gma had a positive biopsy, she should be gluten-free. As the study says (the one quoted on this site), 30 or 33% of people with MGUS (monoclonal gammopathy, may have celiac. That's pretty significant!

Good luck...
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#9 AVR1962

 
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Posted 30 March 2012 - 10:00 PM

Blood testing may not be useful when multiple myeloma is involved. MM can depress the immunoglobulins, as I just found out with my mother. She is very low in serum totals of both IgG and IgA, which renders any celiac testing invalid.

If your gma had a positive biopsy, she should be gluten-free. As the study says (the one quoted on this site), 30 or 33% of people with MGUS (monoclonal gammopathy, may have celiac. That's pretty significant!

Good luck...

Thank you for your reply. My grandmother's situation was too progressed, she passed 2 weeks ago. My doc said that it can run in families and did test me, still waiting for the results.
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#10 cyberprof

 
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Posted 31 March 2012 - 09:20 AM

Thank you for your reply. My grandmother's situation was too progressed, she passed 2 weeks ago. My doc said that it can run in families and did test me, still waiting for the results.


I'm so sorry AVR. I hope your tests are negative!
  • 0
Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#11 beachbirdie

 
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Posted 31 March 2012 - 10:14 AM

Thank you for your reply. My grandmother's situation was too progressed, she passed 2 weeks ago. My doc said that it can run in families and did test me, still waiting for the results.



I'm so very sorry for your loss. I hope you receive comforting information from your own tests.
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#12 AVR1962

 
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Posted 31 March 2012 - 11:46 AM

I'm so very sorry for your loss. I hope you receive comforting information from your own tests.

Thank you so much!
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#13 kendick

 
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Posted 04 May 2012 - 11:17 PM

I am a two year multiple myloma survivor. I have just been diagnosed with celiac desease. I was told there is a connection. BUT, my oncologist said maybe celiac is responsible for the cancer, but not the cancer responsible for celiac! Who knows for sure, but it looks like maybe there is a connection......
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#14 AVR1962

 
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Posted 05 May 2012 - 09:55 PM

I am a two year multiple myloma survivor. I have just been diagnosed with celiac desease. I was told there is a connection. BUT, my oncologist said maybe celiac is responsible for the cancer, but not the cancer responsible for celiac! Who knows for sure, but it looks like maybe there is a connection......

Congratulations to you for kicking multiple myeloma! Docs did test me and reults were negative. I wish you the best in continued good health!
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.




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