I know Google is my friend but my old eyes can't stay on the computer for long periods of time.
Is there a gluten component to Crohn's and UC as well as MC? I think I even saw something about lymphoma (a girlfriend has that) on my trip around the www.......
Our friend's son is in the hospital (in fact changed hospitals after almost a week) with unexplained bleeding. His son, around 13, I think) has Crohn's.
Tex, Crohn's and UC question
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Tex, Crohn's and UC question
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Yes, gluten intolerance seems to apply to all the IBDs, and some people are aware of the connection, but I suspect that many/most are not. I've even seen some doctors mention that "cutting down on gluten intake seems to reduce symptoms", but they don't seem to realize how much good they could do in some cases by totally eliminating gluten.
Lymphoma is a risk with IBDs, because of untreated gluten sensitivity. It has long been common knowledge with celiac disease, that if left untreated, the risk of developing lymphoma increases significantly, so it's not surprising that the same risk applies to IBD patients who are sensitive to gluten, but do not address it.
It's really a shame that so many young people turn up with Crohn's, and the doctors aren't able to do a better job of treating it.
Tex
Lymphoma is a risk with IBDs, because of untreated gluten sensitivity. It has long been common knowledge with celiac disease, that if left untreated, the risk of developing lymphoma increases significantly, so it's not surprising that the same risk applies to IBD patients who are sensitive to gluten, but do not address it.
It's really a shame that so many young people turn up with Crohn's, and the doctors aren't able to do a better job of treating it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
MO, Tex
Thanks for that information. I really appreciate it and so do my eyes.
Should I tell my friend with lymphoma to cut out the gluten? She has been so bad with her symptoms that she is trying to go on a new drug trial at UAB.
Should I tell my friend with lymphoma to cut out the gluten? She has been so bad with her symptoms that she is trying to go on a new drug trial at UAB.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Joan,
Assuming that her lymphoma is a type of non-Hodgkin lymphoma, (not Hodgkin lymphoma), 85% of non-Hodgkin lymphomas are B-cell lymphomas. The other 15% are T-call lymphomas, and of that number, only a small percentage are enteropathy-associated T-cell lymphomas, which are known without question, to be associated with celiac disease, or gluten-sensitive enteropathy. So obviously, there's no guarantee that the cause of her lymphoma was gluten, , (unless she happens to know that she has enteropathy-associated T-cell lymphoma).
Of course, many lymphomas diagnosed in celiacs are of the B-cell type, also, so that complicates the issue. Anyway, if she has T-cell lymphoma, the odds are much higher that gluten was a factor in it's origins, than if she has B-cell lymphoma. The bottom line, though, is whether or not gluten was a cause of her lymphoma, the GF diet most definitely might help to minimize her IBD symptoms. I would certainly recommend it over a research trial of a new med. The problem with participating in those trials, is that after they get the data they want, they cut you loose, with no further provision for treatment, so you're back to square one, whether the treatment works or not.
I had a friend with colon cancer who agreed to participate in one of those trials, because he had no other options left. He was making great progress during the trial, and his cancer was disappearing. When the trial ended, he pleaded for more of the treatment, and he was denied, of course. His cancer once again spread rapidly, and he died soon thereafter. I consider those trials, (in the case of terminally-ill patients, anyway), to be a form of cruel and inhumane treatment. That was a number of years ago, and as far as I know, that drug has never been released for sale, (and probably never will be). Maybe it was too effective - the pharmaceutical companies don't want to take any chances on accidentally putting themselves out of business, by actually curing any major diseases.
Tex
Assuming that her lymphoma is a type of non-Hodgkin lymphoma, (not Hodgkin lymphoma), 85% of non-Hodgkin lymphomas are B-cell lymphomas. The other 15% are T-call lymphomas, and of that number, only a small percentage are enteropathy-associated T-cell lymphomas, which are known without question, to be associated with celiac disease, or gluten-sensitive enteropathy. So obviously, there's no guarantee that the cause of her lymphoma was gluten, , (unless she happens to know that she has enteropathy-associated T-cell lymphoma).
Of course, many lymphomas diagnosed in celiacs are of the B-cell type, also, so that complicates the issue. Anyway, if she has T-cell lymphoma, the odds are much higher that gluten was a factor in it's origins, than if she has B-cell lymphoma. The bottom line, though, is whether or not gluten was a cause of her lymphoma, the GF diet most definitely might help to minimize her IBD symptoms. I would certainly recommend it over a research trial of a new med. The problem with participating in those trials, is that after they get the data they want, they cut you loose, with no further provision for treatment, so you're back to square one, whether the treatment works or not.
I had a friend with colon cancer who agreed to participate in one of those trials, because he had no other options left. He was making great progress during the trial, and his cancer was disappearing. When the trial ended, he pleaded for more of the treatment, and he was denied, of course. His cancer once again spread rapidly, and he died soon thereafter. I consider those trials, (in the case of terminally-ill patients, anyway), to be a form of cruel and inhumane treatment. That was a number of years ago, and as far as I know, that drug has never been released for sale, (and probably never will be). Maybe it was too effective - the pharmaceutical companies don't want to take any chances on accidentally putting themselves out of business, by actually curing any major diseases.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
My husband had Mantel Cell Lymphoma (Non-Hodgkins). He went threw cymo therapy and then they took his stem cells cleaned them and gave them back to him. So far he is cancer free!! This was all done threw the University of KY. The first Dr. we went to recommended he go to a University because he could get in these trials and he said the only thing he could offer him was the cymo. Tomorrow we go back to have him retested. This is his 2 year mark and hopefully the cancer has not come back. The first Dr. we went to told him that stress caused the cancer. But after watching the commercial for Celebrex they quickly say one of the side effects could be Lymphoma... Now I don't know which type of Lymphoma it could cause but my husband had taken it the year before being diagnosed with Lymphoma. We think the combination of stress and the Celebrex may have caused it. But, we have been so thankful to of gone to the University of Ky. The Dr.'s and nurses there were so terrific. His Dr. even called us at home (even on a Sunday) to see how he was doing after he came home from the hospital.
Tex, it's to bad your friend was denied more treatment. All I can say is that we are so grateful that they had them for my husband. He is doing great now.
Tex, it's to bad your friend was denied more treatment. All I can say is that we are so grateful that they had them for my husband. He is doing great now.
Kitkin,
That's great that your husband was able to receive such effective treatment, and I certainly hope that he remains cancer-free. It sounds like the program he was enrolled in was a test of a procedure, rather than a medication, so there was every reason in the world to follow through. In my friend's case, though, the test was sponsored by a pharmaceutical company, to test the viability of a new drug, which, of course, was custom made just for the program, and therefore, only a limited amount of it was available. It wasn't the teaching hospital that refused to treat him, (they did indeed continue to treat him), it was the pharmaceutical company that refused to supply any more of the test drug, for his treatment. They had more of it, but it was earmarked for additional tests, in other hospitals.
I hope the results of tomorrows tests turn out to be exactly what you are hoping for.
Tex
That's great that your husband was able to receive such effective treatment, and I certainly hope that he remains cancer-free. It sounds like the program he was enrolled in was a test of a procedure, rather than a medication, so there was every reason in the world to follow through. In my friend's case, though, the test was sponsored by a pharmaceutical company, to test the viability of a new drug, which, of course, was custom made just for the program, and therefore, only a limited amount of it was available. It wasn't the teaching hospital that refused to treat him, (they did indeed continue to treat him), it was the pharmaceutical company that refused to supply any more of the test drug, for his treatment. They had more of it, but it was earmarked for additional tests, in other hospitals.
I hope the results of tomorrows tests turn out to be exactly what you are hoping for.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex
I talked to my friend with lymphoma and all she could remember is that she has follicular lymphoma. She's dealing with all her problems and her sister has the very same kind of lymphoma plus a newly diagnosed brain tumor. They think it's benign. Sister lives in Alaska.....
She said her legs feel almost normal from her treatment where they were like elephant legs previously. Other report from her doesn't sound so great. She has a stent in her ureter that has to be changed out every 3 months. Bone marrow tests.....
I hope she doesn't have the same experience as your friend. That just made me sick.
She said her legs feel almost normal from her treatment where they were like elephant legs previously. Other report from her doesn't sound so great. She has a stent in her ureter that has to be changed out every 3 months. Bone marrow tests.....
I hope she doesn't have the same experience as your friend. That just made me sick.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Joan,
Follicular lymphoma is the most common of the slow-growing non-Hodgkin's lymphomas. It's of the B-cell type, and it often remains unnoticed for a long time in the body before it's diagnosed. IOW, the symptoms are usually so subtle, that the disease is often advanced before a diagnosis is made. As a result, most individuals aren't diagnosed until they are already in stage III or IV. In many cases, though, even in advanced stages, there is no immediate threat to life. Like Crohn's disease, follicular lymphoma has a "waxing and waning" sort of course – IOW, it flares up and regresses a number of times over the years.
Some patients don't even require treatment, because it's such a slow-growing disease. The bone marrow tests are standard procedure when trying to determine the extent of the disease. Once it's in the advanced stages, many patients survive for 8 to 10 years or more with treatment, and some as long as 20, however, it's also possible that many patients with advanced stage lymphoma can be cured.
You mentioned that her symptoms were currently very bad, but I'm not sure if you were referring to the symptoms of lymphoma, or those of Crohn's. To be honest, I don't see how a GF diet at this point would have any effect at all on her lymphoma, (IOW, it won't cure it), but if she is gluten sensitive, the diet most definitely might help to reduce her symptoms, (besides the enlargement of lymph nodes, symptoms include fever, weight loss, sweating and fatigue). Also, if her Crohn's disease is flaring, the diet might help to control those symptoms.
I certainly hope that she can find some relief, and that the flare that she is in will soon diminish.
Tex
Follicular lymphoma is the most common of the slow-growing non-Hodgkin's lymphomas. It's of the B-cell type, and it often remains unnoticed for a long time in the body before it's diagnosed. IOW, the symptoms are usually so subtle, that the disease is often advanced before a diagnosis is made. As a result, most individuals aren't diagnosed until they are already in stage III or IV. In many cases, though, even in advanced stages, there is no immediate threat to life. Like Crohn's disease, follicular lymphoma has a "waxing and waning" sort of course – IOW, it flares up and regresses a number of times over the years.
Some patients don't even require treatment, because it's such a slow-growing disease. The bone marrow tests are standard procedure when trying to determine the extent of the disease. Once it's in the advanced stages, many patients survive for 8 to 10 years or more with treatment, and some as long as 20, however, it's also possible that many patients with advanced stage lymphoma can be cured.
You mentioned that her symptoms were currently very bad, but I'm not sure if you were referring to the symptoms of lymphoma, or those of Crohn's. To be honest, I don't see how a GF diet at this point would have any effect at all on her lymphoma, (IOW, it won't cure it), but if she is gluten sensitive, the diet most definitely might help to reduce her symptoms, (besides the enlargement of lymph nodes, symptoms include fever, weight loss, sweating and fatigue). Also, if her Crohn's disease is flaring, the diet might help to control those symptoms.
I certainly hope that she can find some relief, and that the flare that she is in will soon diminish.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Oh, that's different. I thought we were talking about Crohn's and UC.
It's not easy to pinpoint the cause of follicular lymphoma. For cutting gluten out of her diet to have any benefits, she would probably need to be an undiagnosed celiac, and if she's asymptomatic, (as far as celiac symptoms are concerned), then the only way that would be detected would be if it were accidentally discovered by means of biopsies taken during an upper endoscopy.
Has she ever taken any immune system suppressing drugs? That can significantly increase the risk of developing the disease. Does she have any other autoimmune diseases? Having other immune system issues increases the risk of developing follicular lymphoma, and it's also a good reason to suspect that she might be sensitive to gluten, and in that case, eliminating it from her diet could possibly be beneficial, as far as controlling the symptoms are concerned.
Tex
It's not easy to pinpoint the cause of follicular lymphoma. For cutting gluten out of her diet to have any benefits, she would probably need to be an undiagnosed celiac, and if she's asymptomatic, (as far as celiac symptoms are concerned), then the only way that would be detected would be if it were accidentally discovered by means of biopsies taken during an upper endoscopy.
Has she ever taken any immune system suppressing drugs? That can significantly increase the risk of developing the disease. Does she have any other autoimmune diseases? Having other immune system issues increases the risk of developing follicular lymphoma, and it's also a good reason to suspect that she might be sensitive to gluten, and in that case, eliminating it from her diet could possibly be beneficial, as far as controlling the symptoms are concerned.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.