Celiac - MGUS Connection?

I've been reading the possible connections between Celiac and MGUS/MM. After reading through some of the symptoms of Celiac, I discovered that I was experiencing about 80% of the symptoms. of particular note were rashes that I had developed on my forehead and chest.  Since my IgA was extremely elevated on my last blood work, I figured it couldn't hurt to go gluten free for awhile to see what happens. 

Very interesting short term results: almost immediately my rashes disappeared (almost 100% in just one week!) and my stomach began to feel better.  Also, I don't have the extreme appetite that I used to have.  I am astonished by these results and also somewhat bewildered that my onc hasn't even  suggested a possible relationship.  What's up with that?  I'm going to ask for the Celiac test for next week at my follow up appointment.

Has anyone else experienced anything similar and why aren't doctors tuned into this?    

From Anna,

Hi Konner, A couple of years ago Dad did a similar diet.  Least I think so.  Mom and to make a lot of things from scatch for him and he couldn't eat sugar or salt if I remember right.  It did seem to help me but he didn't stay on it cause it was so hard to find things he could get and a whole lot of cooking for Mom.  Does this sound like what you do?

Your friend,

Anna

On 8/19/2009 Konner wrote:

I've been reading the possible connections between Celiac and MGUS/MM. After reading through some of the symptoms of Celiac, I discovered that I was experiencing about 80% of the symptoms. of particular note were rashes that I had developed on my forehead and chest.  Since my IgA was extremely elevated on my last blood work, I figured it couldn't hurt to go gluten free for awhile to see what happens. 

Very interesting short term results: almost immediately my rashes disappeared (almost 100% in just one week!) and my stomach began to feel better.  Also, I don't have the extreme appetite that I used to have.  I am astonished by these results and also somewhat bewildered that my onc hasn't even  suggested a possible relationship.  What's up with that?  I'm going to ask for the Celiac test for next week at my follow up appointment.

Has anyone else experienced anything similar and why aren't doctors tuned into this?    

 

Actually, I'm trying to watch my sugar also.  Yes, it is hard to find gluten-free products but I'm giving it the effort.

Konnor-

There have been several members of beating-myeloma.org who have celiac disease and mm or who, like you, have celiac-like symptoms.

http://beating-myeloma.org/subject/celiac-disease

David

I believe there is a connection. My daughters and I went gluten free 2 years ago, before I ever heard of MGUS. I feel much better. I am also dairy free. The Igg, Iga connection is amazing to me but doctors don't see it. There is a world of food that is gluten free.

 

I too had a lot of symptoms and was tested for celiacs but it was negative. I now have MM and in the transplant process.  I will say some of those symptoms have gone away..Take care Gayle

Hi!  I just had my 4th bone marrow test of my life (8/20/09 the day after my 54th birthday)...as well just had a bunch of xrays of my full body today.  I just found this message board and have discussed mgus with my physicians' assistant just before the bone marrow test was taken.  Just like others here...maybe gluten free is for me?  I'm going to at least ask about this to see if he feels there's any relationship when I get results on 9/4.  Not sure what else to ask him too.  I'm alone (meaning not married/relationship) and this scares me.  Thanks for reading this :) 

Search this board and you will find earlier postings related to this discussion.

My half sister and I have CD, our father had MM.  Our grandfather and paternal aunt also likely had MM, they were diagnosed and died in the '70s of bone cancer.  My father had extreme CD symptoms his entire life but was never diagnosed. 

While I am now on a gluten free diet, I may have been diagnosed so late the damage has already been done.  I am battling never ending infections (that ultimately end up in my kidneys), and was diagnosed with osteoporosis and spinal fractures at 43. 

There is a demonstrated genetic relationship in Celiac Disease and researchers are now studying the possibility that genetics plays a role in MM.  Whether or not there is a direct relationship remains to be seen, but the similarities in my symptoms and my dad's pre-MM diagnosis terrify me. 

 

On 8/21/2009 Windymoose50 wrote:

I too had a lot of symptoms and was tested for celiacs but it was negative. I now have MM and in the transplant process.  I will say some of those symptoms have gone away..Take care Gayle

Gayle, many of the tests for Celiac return negative or inconclusive results even when an individual is gluten intolerent.  The best tests are genetic screening and/or endoscopy to see if the villi in your intestines have been affected.  I'm not sure if you had either of these tests, but if not, I would try going gluten free anyway to see if the remaining symptoms are resolved.