Hi Everyone,
So pleased I've found this website. After being prescribed Omeprazole for an ulcer caused by anti-inflamatories two years ago I developed gastro symptoms that turned out to be L.C. At first I simply had pain after eating multigrain bread but now I can't eat breads, vegetables (even if cooked), most fruits, eggs, chocolate, cheese, red meat, chicken. I seem restricted to rice, bananas and some milk products. I've lost a lot of weight over this time.
I've been on Sulfasalizine which made it worse, Prednisone which only helped a little bit and now Questran that used to work but with little effect now. I also often take Immodium. My doctor He has given me few options for medication and has never discussed diet. After reading posts on this website I'm interested in asking my doctor for Entocort and keen on any comments anyone might have re meds. Any suggestions?
My symptoms are slowly getting worse over the two years with such frequent BMs that I am reluctant to leave the house. My Australian specialist recently told me that L.C. is not characterised by pain and I was astounded given the amount of pain I have every day and night. Can anyone tell me whether pain is a common problem?
Thanks!
Bee's History and 2 Questions
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Bee,
Welcome to our internet family. Your symptoms seem to be very similar to the symptoms experienced by most of the members of this discussion board. And unfortunately, we have more than a few members whose symptoms began after a proton pump inhibitor (PPI) was prescribed by their doctor.
Based on the accumulated experiences of all the members here, we have determined that medications such as Entocort (budesonide) can help to suppress the inflammation that causes LC, but of course they cannot prevent the inflammation from being regenerated. We have found that the only way to prevent the inflammation from being created in the first place, is to remove the foods that are causing the inflammation from our diet. Most of us here are sensitive to gluten and all dairy products, and about half of us are also sensitive to soy. Some of us also have other food sensitivities that we have to avoid, but gluten, dairy, and soy are the main problems.
Unfortunately, most GI specialists know so little about the disease that they rely on earlier medical literature about the disease, and their training is way out of date. Not all of us have pain associated with the disease, but for most of us, pain is a major problem, and many of us also have other symptoms, such as migraines, muscle and joint pain and stiffness that resembles arthritis. Some of us also have nausea, and neurological symptoms, such as brain fog.
Most of these additional symptoms (other than diarrhoea) are due to gluten sensitivity that causes increased intestinal permeability that allows gluten peptides to circulate throughout the body, to be deposited in joints and various organs of the body, including the brain. We have the same symptoms as coeliacs, and we are just as sensitive to gluten as the average coeliac, but the classic coeliac blood tests always show negative results for us because the tests are not sensitive enough to detect anything less than fully-developed coeliac disease.
Please don't expect your GI specialist to be aware of any of this, though, because most of them have such little experience with the disease, and their training is so inadequate, that they still believe that diet has no effect on digestive system diseases such as LC. That's like thinking that breathing polluted air has nothing to do with lung disease, or respiratory allergies.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. Your symptoms seem to be very similar to the symptoms experienced by most of the members of this discussion board. And unfortunately, we have more than a few members whose symptoms began after a proton pump inhibitor (PPI) was prescribed by their doctor.
Based on the accumulated experiences of all the members here, we have determined that medications such as Entocort (budesonide) can help to suppress the inflammation that causes LC, but of course they cannot prevent the inflammation from being regenerated. We have found that the only way to prevent the inflammation from being created in the first place, is to remove the foods that are causing the inflammation from our diet. Most of us here are sensitive to gluten and all dairy products, and about half of us are also sensitive to soy. Some of us also have other food sensitivities that we have to avoid, but gluten, dairy, and soy are the main problems.
Unfortunately, most GI specialists know so little about the disease that they rely on earlier medical literature about the disease, and their training is way out of date. Not all of us have pain associated with the disease, but for most of us, pain is a major problem, and many of us also have other symptoms, such as migraines, muscle and joint pain and stiffness that resembles arthritis. Some of us also have nausea, and neurological symptoms, such as brain fog.
Most of these additional symptoms (other than diarrhoea) are due to gluten sensitivity that causes increased intestinal permeability that allows gluten peptides to circulate throughout the body, to be deposited in joints and various organs of the body, including the brain. We have the same symptoms as coeliacs, and we are just as sensitive to gluten as the average coeliac, but the classic coeliac blood tests always show negative results for us because the tests are not sensitive enough to detect anything less than fully-developed coeliac disease.
Please don't expect your GI specialist to be aware of any of this, though, because most of them have such little experience with the disease, and their training is so inadequate, that they still believe that diet has no effect on digestive system diseases such as LC. That's like thinking that breathing polluted air has nothing to do with lung disease, or respiratory allergies.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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.
Hi Tex,
Great to meet you and thanks so much for the reply. I'm so pleased to have come across this website and meet people with the same sort of problems.
Typically my specialist did not mention diet to me and it wasn't until I stumbled upon a few comments on the Mayo Clinic website that I started looking further into dietary options. I've found I can't tolerate gluten, dairy, nuts, raw foods, beans and fruits except for bananas or berries. The intolerances have gradually increased so it wasn't obvious at the start.
Thanks very much for the information on medications. I'm hoping to sort it all out with diet but in the meantime am taking Questran for the symptoms and sometimes Immodium so I can at least leave the house without too much stress. My symptoms did reduce while I was on Prednisone for an unrelated problem but I want to avoid steroids if possible.
Thanks again for your helpful comments :)
Great to meet you and thanks so much for the reply. I'm so pleased to have come across this website and meet people with the same sort of problems.
Typically my specialist did not mention diet to me and it wasn't until I stumbled upon a few comments on the Mayo Clinic website that I started looking further into dietary options. I've found I can't tolerate gluten, dairy, nuts, raw foods, beans and fruits except for bananas or berries. The intolerances have gradually increased so it wasn't obvious at the start.
Thanks very much for the information on medications. I'm hoping to sort it all out with diet but in the meantime am taking Questran for the symptoms and sometimes Immodium so I can at least leave the house without too much stress. My symptoms did reduce while I was on Prednisone for an unrelated problem but I want to avoid steroids if possible.
Thanks again for your helpful comments :)
Bee
G'day Bee,
You're very welcome, and I hope that you will continue to make progress with your recovery.
Incidentally, if you will post on the Main Message Board you will get many more responses. It seems that most members follow only that forum, and so they often don't even notice posts in other locations on this discussion board.
Controlling this disease is a work in progress for most of us. Even though I've been in remission for 9 years now, I still find it necessary to adjust my diet now and then.
Good luck with your treatment program.
Tex
You're very welcome, and I hope that you will continue to make progress with your recovery.
Incidentally, if you will post on the Main Message Board you will get many more responses. It seems that most members follow only that forum, and so they often don't even notice posts in other locations on this discussion board.
Controlling this disease is a work in progress for most of us. Even though I've been in remission for 9 years now, I still find it necessary to adjust my diet now and then.
Good luck with your treatment program.
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.