It’s been a rough year for me in 2017. I am a 55 year old man who had not been to a hospital in 30 years, I had been taking my health for granted. In 2017, I’ve been to the emergency room 3 times including a 3 day stay dealing with severe acute pancreatitis that was caused by blockage and had my gallbladder removed.
On August 4th I was diagnosed with Lymphocytic Colitis (LC) after my second colonoscopy in less than a year. I was prescribed Budesonide (qty. 3-3mg pills per day) on August 8th. I have been what I call 99% gluten free since the LC diagnosis. I also changed my diet to be low fiber and nearly no milk products. I tried Questran and it seemed to make my diarrhea (D) worse.
About a month ago I finally felt I had my D under control but it took 8 imodium a day to get there. I have never experienced any issues with constipation but still have had some days where D is an issue.
2 weeks ago my doctor wanted to get me off the Imodium because of concerns with long term use and side effects. I am now trying up to 8 Lomotil per day. I am having issues with dizziness and lethargy. Blood tests show that I am deficient in vitamin D so I have been taking a capsule supplement daily and have had a couple of vitamin B-12 shots.
My GI doctor does not believe that diet is a factor with LC and I don’t agree. I have not been able to figure out what foods are a problem for me but I do believe that there is still something poisoning my body and not letting the colitisgo into remission. My GI doctor explaination was that 80% of patients respond to the Budesonide but that I must fall in the 20% group. Both my family doctor and my GI doctor don’t think I should discontinue the Budesonide.
I have ordered the book by Wayne Persky and should receive tomorrow. I feel I need a GI doctor with experience with LC patients. My next step may be to do the Enterolab testing to get a better idea of my food sensitivities. For example, I eat a lot of grilled chicken and maybe this is a part of the issue.
I understand that many of you on this forum have gone through similar issues. I am on a mission (New Year’s Resolution) to get this LC on the right track.
Any help is appreciated.
New Year's Resolution-- Dealing with LC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Johnny,
Welcome to the forum. You obviously know more about treating MC than your doctor, so you would probably be much better off if you fired him and put yourself on the payroll instead. Taking up to 8 Imodium per day is generally safe. Taking up to 8 Lomotil pills per day is borderline, because it contains atropine which is there to make you sick if you try to take more than 20 mg (8 tablets) per day. It is often less effective for MC patients than Imodium, so switching those medications may have been counterproductive. Of course those two medications do not treat the inflammation anyway, they are only antidiarrheals.
You're correct — you could use a GI doctor who has some experience treating LC/MC/CC patients, but it's tough to find a GI doctor who really understands MC. Unfortunately far to many of them still believe that diet has nothing to do with this disease. (They probably also believe that breathing polluted air has nothing to do with lung disease, either.)
The reason why you are not responding to your treatment is because 99 % gluten-free is worse than no diet at all. Cutting out 99 % of the gluten just makes your immune system much more sensitive to gluten. You have to avoid gluten 100 % or there is little point in changing your diet. Dairy products are a similar issue, they also need to be avoided 100 %. But they're a relatively minor item compared with the gluten. Gluten is toxic for us, even in trace amounts.
You can fulfill your resolution and gain control of MC, but it will take some dedicated effort on your diet. Many of us are more sensitive to gluten than the average celiac.
It's possible that chicken is a problem. If you suspect it, you might switch to turkey. No one reacts to turkey.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum. You obviously know more about treating MC than your doctor, so you would probably be much better off if you fired him and put yourself on the payroll instead. Taking up to 8 Imodium per day is generally safe. Taking up to 8 Lomotil pills per day is borderline, because it contains atropine which is there to make you sick if you try to take more than 20 mg (8 tablets) per day. It is often less effective for MC patients than Imodium, so switching those medications may have been counterproductive. Of course those two medications do not treat the inflammation anyway, they are only antidiarrheals.
You're correct — you could use a GI doctor who has some experience treating LC/MC/CC patients, but it's tough to find a GI doctor who really understands MC. Unfortunately far to many of them still believe that diet has nothing to do with this disease. (They probably also believe that breathing polluted air has nothing to do with lung disease, either.)
The reason why you are not responding to your treatment is because 99 % gluten-free is worse than no diet at all. Cutting out 99 % of the gluten just makes your immune system much more sensitive to gluten. You have to avoid gluten 100 % or there is little point in changing your diet. Dairy products are a similar issue, they also need to be avoided 100 %. But they're a relatively minor item compared with the gluten. Gluten is toxic for us, even in trace amounts.
You can fulfill your resolution and gain control of MC, but it will take some dedicated effort on your diet. Many of us are more sensitive to gluten than the average celiac.
It's possible that chicken is a problem. If you suspect it, you might switch to turkey. No one reacts to turkey.
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.
Hi, Johnny. Welcome to our group. You will learn much more here than you will from your doctor. I am in remission thanks to this group, Tex's book and stool testing done by EnteroLabs. I am much like you, I was very healthy (or so I thought) until I was diagnosed with LC four years ago. Search the forums, ask a lot of questions and before too long you, too will be a success story.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome Johnny
some areas on this site that will help you with the healing journey;-
- guidelines to recovery, suggested eating plan, and other key info that will help you in the healing process
http://perskyfarms.com/phpBB2/viewforum.php?f=79
- member success stories - see posts about what others have done - what worked (what didnt) and how long it took
http://perskyfarms.com/phpBB2/viewforum.php?f=71
hope this helps
some areas on this site that will help you with the healing journey;-
- guidelines to recovery, suggested eating plan, and other key info that will help you in the healing process
http://perskyfarms.com/phpBB2/viewforum.php?f=79
- member success stories - see posts about what others have done - what worked (what didnt) and how long it took
http://perskyfarms.com/phpBB2/viewforum.php?f=71
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks so much for the replies and Happy New Year to all.
A little more on myself. I am required to travel often for my job and eating on the road with a strict diet is quite a challenge which I am sure most of you are aware.
I am thinking the Enterolab testing will help me narrow down my options for good foods.
Do you think that being on Budesonide for 5 months will hurt my test results?
Also which tests should I do to help meet my goals.
Thanks again!
A little more on myself. I am required to travel often for my job and eating on the road with a strict diet is quite a challenge which I am sure most of you are aware.
I am thinking the Enterolab testing will help me narrow down my options for good foods.
Do you think that being on Budesonide for 5 months will hurt my test results?
Also which tests should I do to help meet my goals.
Thanks again!
Yes the EnteroLab test results should come in very handy if you have to eat out a lot. The Enterolab tests will probably still work fine for you, but I wouldn't postpone them much longer because the budesonide will probably begin to affect your immune system in a few more months. Most members seem to prefer the A1 plus the C1 test Panels.
https://www.enterolab.com/StaticPages/T ... #PanelA1C1
I would also recommend that you keep a product such as GlutenEase handy in case you need it. If you think you've been glutened by a meal you can take a pill and minimize or even prevent a reaction if you take it soon enough. Or you can take a pill before you eat if you suspect the food might be cross-contaminated by gluten or dairy at a restaurant. It will help in most situations, but trying to use it to allow you to intentionally eat gluten is asking for trouble.
Tex
https://www.enterolab.com/StaticPages/T ... #PanelA1C1
I would also recommend that you keep a product such as GlutenEase handy in case you need it. If you think you've been glutened by a meal you can take a pill and minimize or even prevent a reaction if you take it soon enough. Or you can take a pill before you eat if you suspect the food might be cross-contaminated by gluten or dairy at a restaurant. It will help in most situations, but trying to use it to allow you to intentionally eat gluten is asking for trouble.
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.