newly diagnosed and feeling stuck
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
newly diagnosed and feeling stuck
Hi, after 4 years of unexplained diarrhea, stomach pain, and nausea, I was finally diagnosed with lymphocytic colitis about 5 weeks ago. I was diagnosed with celiac disease 11 years ago and have since followed a strict gluten free diet. My doctor prescribed entocort and asacol upon diagnosis, but the asacol seemed to cause increased diarrhea, so after reducing the dose, the doctor suggested that I stop it until my symptoms were more in control. After 5 weeks on the entocort, my diarrhea is improving, but I continue to have significant abdominal pain and pelvic pain. Have others experienced a longer healing time for the pain? Any suggestions about ways to reduce the pain? I've also been taking iberogast and am in the process of weaning off zantac (I was on aciphex for 4 years, which I suspect contributed to my current symptoms). Do others experience pelvic pain and considerable abdominal pain while trying to sleep? My doctor seemed surprised that I am still having symptoms-- how long do most people take to heal? I've had every GI test and blood test imaginable in the past 4 years and everything else appears normal. Thanks so much-- I really appreciate the help!
Hi Miriam,
Welcome to our internet family. Your abdominal pain is almost surely caused by food sensitivities that are triggered when the genes that predisose to MC (LC) are triggered. In additonal to gluten, most of us are also sensitive to all dairy products (casein), and soy, and many of us are also sensitive to eggs. Some have other food sensitivities, as well.
While Entocort can mask some of the symptoms, for many of us it does not bring complete relief, and unless we change our diet to eliminate the foods that cause us to react, when we stop using the Entocort, we will relapse, and the symptoms will all return.
It takes a long time for the gut to heal (after we eliminate all of our food sensitivities from our diet). Kids heal much faster than adults. For most of us, it takes from 6 months to a year to heal enough to resolve most of the symptoms, and complete healing takes at least 2 years or longer.
Yes, most of us experience miserable pain, even when we're trying to sleep. Until I figured out which foods I needed to cut out of my diet, I spent many a sleepless night. I was like a zombie during the day, after a string of nights with no or very little sleep.
Most doctors don't understand the disease, and they really don't have a clue about how debilitating the disease can be, and what we have to go through to get our life back. That's why we come to this discussion board to share experiences, and to learn from others about what works, and what doesn't work.
Most of us begin our recovery by ordering stool tests from EnteroLab, in order to determine our food sensitivities. Without those test results for guidance, the only other way to track down our problem foods is by following an elimination diet, and after we are in remission, testing foods one at a time, to see if we react to them. That takes a long time, and it's often difficult to find an elimination diet that works for us.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Your abdominal pain is almost surely caused by food sensitivities that are triggered when the genes that predisose to MC (LC) are triggered. In additonal to gluten, most of us are also sensitive to all dairy products (casein), and soy, and many of us are also sensitive to eggs. Some have other food sensitivities, as well.
While Entocort can mask some of the symptoms, for many of us it does not bring complete relief, and unless we change our diet to eliminate the foods that cause us to react, when we stop using the Entocort, we will relapse, and the symptoms will all return.
It takes a long time for the gut to heal (after we eliminate all of our food sensitivities from our diet). Kids heal much faster than adults. For most of us, it takes from 6 months to a year to heal enough to resolve most of the symptoms, and complete healing takes at least 2 years or longer.
Yes, most of us experience miserable pain, even when we're trying to sleep. Until I figured out which foods I needed to cut out of my diet, I spent many a sleepless night. I was like a zombie during the day, after a string of nights with no or very little sleep.
Most doctors don't understand the disease, and they really don't have a clue about how debilitating the disease can be, and what we have to go through to get our life back. That's why we come to this discussion board to share experiences, and to learn from others about what works, and what doesn't work.
Most of us begin our recovery by ordering stool tests from EnteroLab, in order to determine our food sensitivities. Without those test results for guidance, the only other way to track down our problem foods is by following an elimination diet, and after we are in remission, testing foods one at a time, to see if we react to them. That takes a long time, and it's often difficult to find an elimination diet that works for us.
Again, welcome aboard, and please feel free to ask anything.
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.
Hello. I have LC as well and I found that dairy affected me more than gluten. Check your labels for whey and any other name that might be dairy. Don't count on your doctor for help. I found relief on my own by reading Tex's book and surfing the internet, especially this support group. Good luck to you on your journey.
Thanks! Have you found that you have to eliminate these foods permanently or just until the body heals?
I'm a bit hesitant to cut out any more food groups because I have lost a lot of weight and already follow a gluten free, vegetarian (recently with a little fish), and kosher diet. A few years ago, I had a blood test for dairy and soy allergies and they came back normal-- is the stool test different?
thanks again!
I'm a bit hesitant to cut out any more food groups because I have lost a lot of weight and already follow a gluten free, vegetarian (recently with a little fish), and kosher diet. A few years ago, I had a blood test for dairy and soy allergies and they came back normal-- is the stool test different?
thanks again!
Hi,Miriam. I am only dealing with LC for 7 months so I am not at the point where I'm going to try adding dairy or gluten. Too many bad memories from that! I eat chicken, turkey, salmon, 99% fat free ground turkey breast (check the label for added gluten,) & fish. I am able to eat an apple if I peel it first. I have a banana a day and I steam broccoli, spinach and zucchini. I eat sweet potatoes several times a week. I also don't have a problem with eggs, some people with MC do. I have not had the stool test yet, I plan to do that in the future. Hang in there!
Certain foods (the ones to which we produce antibodies, such as gluten, casein, and soy), usually have to be avoided forever, but many of the others (such as veggies and fruits, for example) can often be added back into the diet.miriam wrote:Thanks! Have you found that you have to eliminate these foods permanently or just until the body heals?
I'm a bit hesitant to cut out any more food groups because I have lost a lot of weight and already follow a gluten free, vegetarian (recently with a little fish), and kosher diet. A few years ago, I had a blood test for dairy and soy allergies and they came back normal-- is the stool test different?
thanks again!
The blood tests are useful for detecting food allergies (that cause skin rashes and respiratory symptoms, for example) but typically they are of little value for determining the foods that cause digestive system problems associated with MC. For that, the EnteroLab stool tests are the only game in town (the only reliable one, anyway).
And if we produce antibodies to a food, then we usually have no choice but to avoid it 100 %, because if we fail to do so, it will perpetuate the inflammation and prevent us from achieving remission.
You're very welcome.
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.