Gluten/Celiac

Forums General Melanoma Community Gluten/Celiac

  • Post
    bella001
    Participant

      Hello!

       

      I was dx w/ stage 1 Melanoma is 2004.  I had a WLE and have been NED since.  Last year I learned I have Celiac.  After doing a ton of research on that I'm finding more and more info about a much higher Melanoma rate among Celiacs.  It's relating it to a vitamin D problem.  Anybody else have Celiac or gluten intolerance and also Melanoma?  Just curious if I'm unique or not.

       

      Thanks!

       

      Hello!

       

      I was dx w/ stage 1 Melanoma is 2004.  I had a WLE and have been NED since.  Last year I learned I have Celiac.  After doing a ton of research on that I'm finding more and more info about a much higher Melanoma rate among Celiacs.  It's relating it to a vitamin D problem.  Anybody else have Celiac or gluten intolerance and also Melanoma?  Just curious if I'm unique or not.

       

      Thanks!

       

    Viewing 8 reply threads
    • Replies
        akls
        Participant

          It is so interesting you posted this.  I've alway had "tummy" troubles and 25 years ago when I was having an upper GI in a little town in Michigan the radiologist said that it looked like celiac/sprue.  My Dr. and everyone I talked to said I didn't fit the profile and they couldn't believe that's what I had so I was diagnosed with IBS.  I have wanted to look back at the possilbe celiac diagnosis now that so many seem to be diagnosed with it.  When I started researching it I found the melanoma link.  I think it's becsause of the autoimmune properties of celiac.  I've tried on my own to just stop gluten and see if my "tummy" troubles get better, but I always end up not making it becasue so much has gluten in it.  I am taking vitamin D because my levels were a little low.

           

          Amy S. in Michigan

          akls
          Participant

            It is so interesting you posted this.  I've alway had "tummy" troubles and 25 years ago when I was having an upper GI in a little town in Michigan the radiologist said that it looked like celiac/sprue.  My Dr. and everyone I talked to said I didn't fit the profile and they couldn't believe that's what I had so I was diagnosed with IBS.  I have wanted to look back at the possilbe celiac diagnosis now that so many seem to be diagnosed with it.  When I started researching it I found the melanoma link.  I think it's becsause of the autoimmune properties of celiac.  I've tried on my own to just stop gluten and see if my "tummy" troubles get better, but I always end up not making it becasue so much has gluten in it.  I am taking vitamin D because my levels were a little low.

             

            Amy S. in Michigan

              bella001
              Participant

                Hi Amy!

                What I've learned is that most doctors are still in the stone age with their info on Celiac.  I had to fight with mine to get her to listen to me.  She told me the same thing since I didn't have one of the known symptoms.  Think some of them like to just throw a pill at problems and this is one they cannot.  They have  found over 200 symptoms that can be related to it now.  I've had stomach issues since a child.   It's been blammed on everything from stress to IBS.

                You are right that it is very hard to avoid gluten, but it can be done.  I've been free from it for a year and a half now.  I basically eat meats, fruits, veggies, and dairy.  Eating out and fast food I cannot do.  I also cannot eat most boxed items at the store. 

                Best Of Luck!

                 

                bella001
                Participant

                  Hi Amy!

                  What I've learned is that most doctors are still in the stone age with their info on Celiac.  I had to fight with mine to get her to listen to me.  She told me the same thing since I didn't have one of the known symptoms.  Think some of them like to just throw a pill at problems and this is one they cannot.  They have  found over 200 symptoms that can be related to it now.  I've had stomach issues since a child.   It's been blammed on everything from stress to IBS.

                  You are right that it is very hard to avoid gluten, but it can be done.  I've been free from it for a year and a half now.  I basically eat meats, fruits, veggies, and dairy.  Eating out and fast food I cannot do.  I also cannot eat most boxed items at the store. 

                  Best Of Luck!

                   

                  bella001
                  Participant

                    Hi Amy!

                    What I've learned is that most doctors are still in the stone age with their info on Celiac.  I had to fight with mine to get her to listen to me.  She told me the same thing since I didn't have one of the known symptoms.  Think some of them like to just throw a pill at problems and this is one they cannot.  They have  found over 200 symptoms that can be related to it now.  I've had stomach issues since a child.   It's been blammed on everything from stress to IBS.

                    You are right that it is very hard to avoid gluten, but it can be done.  I've been free from it for a year and a half now.  I basically eat meats, fruits, veggies, and dairy.  Eating out and fast food I cannot do.  I also cannot eat most boxed items at the store. 

                    Best Of Luck!

                     

                  akls
                  Participant

                    It is so interesting you posted this.  I've alway had "tummy" troubles and 25 years ago when I was having an upper GI in a little town in Michigan the radiologist said that it looked like celiac/sprue.  My Dr. and everyone I talked to said I didn't fit the profile and they couldn't believe that's what I had so I was diagnosed with IBS.  I have wanted to look back at the possilbe celiac diagnosis now that so many seem to be diagnosed with it.  When I started researching it I found the melanoma link.  I think it's becsause of the autoimmune properties of celiac.  I've tried on my own to just stop gluten and see if my "tummy" troubles get better, but I always end up not making it becasue so much has gluten in it.  I am taking vitamin D because my levels were a little low.

                     

                    Amy S. in Michigan

                    NancyGM
                    Participant

                      I am stage IV NED and I seem to have developed a sensitivity to whole wheat- skin reaction- since my melanoma treatment. Since I quit wheat and dairy all my digestive issues have gotten better. I would be interested to learn more about this connection.

                      NancyGM
                      Participant

                        I am stage IV NED and I seem to have developed a sensitivity to whole wheat- skin reaction- since my melanoma treatment. Since I quit wheat and dairy all my digestive issues have gotten better. I would be interested to learn more about this connection.

                        NancyGM
                        Participant

                          I am stage IV NED and I seem to have developed a sensitivity to whole wheat- skin reaction- since my melanoma treatment. Since I quit wheat and dairy all my digestive issues have gotten better. I would be interested to learn more about this connection.

                          danipersing
                          Participant

                            Hi!  I was also Stage I in late 2004 (Breslow 0.4mm, Clarks IV), and was just diagnosed with Celiac Disease about a month ago.  Did not have classic Celiac symptoms, but some of the symptoms I've had since I was 13!  So one of the websites I'm reading says that Celiac patients have a higher risk of Melanoma…..I'm thinking, WHAT???  I do think that, for me, my melanoma was Vitamin D deficiency related.  After diagnosis (about 4 years after) I was tested for Vit D levels and found to be extremely low.  I have been taking the high-dose Vitamin D once weekly ever since.  I was diagnosed with atypical mole syndrome and I was getting biopsies on my "weird" moles every 6 months and always have 3 or 4 excisions (lots of moderate to severe atypia) but since I've been on the Vitamin D I've had maybe 2 biopsies, no excisions.  My last appointment in December was the first time, since diagnosis, that I had no biopsies!  It was great!  I'm hopeful that now that I've gone gluten free my Vitamin D absorption problems will resolve and that my chances for future melanomas will be that much less! 

                             

                            Danica

                            danipersing
                            Participant

                              Hi!  I was also Stage I in late 2004 (Breslow 0.4mm, Clarks IV), and was just diagnosed with Celiac Disease about a month ago.  Did not have classic Celiac symptoms, but some of the symptoms I've had since I was 13!  So one of the websites I'm reading says that Celiac patients have a higher risk of Melanoma…..I'm thinking, WHAT???  I do think that, for me, my melanoma was Vitamin D deficiency related.  After diagnosis (about 4 years after) I was tested for Vit D levels and found to be extremely low.  I have been taking the high-dose Vitamin D once weekly ever since.  I was diagnosed with atypical mole syndrome and I was getting biopsies on my "weird" moles every 6 months and always have 3 or 4 excisions (lots of moderate to severe atypia) but since I've been on the Vitamin D I've had maybe 2 biopsies, no excisions.  My last appointment in December was the first time, since diagnosis, that I had no biopsies!  It was great!  I'm hopeful that now that I've gone gluten free my Vitamin D absorption problems will resolve and that my chances for future melanomas will be that much less! 

                               

                              Danica

                                bella001
                                Participant

                                  I have to go for a WLE on Tuesday.  Just had a severely atypical mole removed on my back.  I'm going to have my D levels checked and figure out if I need to take something.  I think for me, that maybe the problem but who knows : )

                                  bella001
                                  Participant

                                    I have to go for a WLE on Tuesday.  Just had a severely atypical mole removed on my back.  I'm going to have my D levels checked and figure out if I need to take something.  I think for me, that maybe the problem but who knows : )

                                    bella001
                                    Participant

                                      I have to go for a WLE on Tuesday.  Just had a severely atypical mole removed on my back.  I'm going to have my D levels checked and figure out if I need to take something.  I think for me, that maybe the problem but who knows : )

                                    danipersing
                                    Participant

                                      Hi!  I was also Stage I in late 2004 (Breslow 0.4mm, Clarks IV), and was just diagnosed with Celiac Disease about a month ago.  Did not have classic Celiac symptoms, but some of the symptoms I've had since I was 13!  So one of the websites I'm reading says that Celiac patients have a higher risk of Melanoma…..I'm thinking, WHAT???  I do think that, for me, my melanoma was Vitamin D deficiency related.  After diagnosis (about 4 years after) I was tested for Vit D levels and found to be extremely low.  I have been taking the high-dose Vitamin D once weekly ever since.  I was diagnosed with atypical mole syndrome and I was getting biopsies on my "weird" moles every 6 months and always have 3 or 4 excisions (lots of moderate to severe atypia) but since I've been on the Vitamin D I've had maybe 2 biopsies, no excisions.  My last appointment in December was the first time, since diagnosis, that I had no biopsies!  It was great!  I'm hopeful that now that I've gone gluten free my Vitamin D absorption problems will resolve and that my chances for future melanomas will be that much less! 

                                       

                                      Danica

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