I was diagnoses almost 13 years ago. This board saved my sanity! I have been gluten, dairy, corn, and soy free ever since. In the last few years all complex carbs have made me feel achy, so I limit them to one 24 hour period every 10 days or so. When achy, I have to exercise.
All in all, I feel great and have never relapsed.
I have a few questions:
For those of you who have been intolerance free for a long time, have you been able to start eating any of you trigger foods? I accidentally ate three pieces of my husbands beef jerky that had gluten and soy, and I DIDN'T get sick! I'm too chicken to try again.
Has anyone been treated with immunosuppressant drugs? Theoretically, we should be able to take them and eat what ever we want. See how I dream! Haha
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This is Jean looking for updates
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
This is Jean looking for updates
Be kind to everyone, because you never know what battles they are fighting.
Hey Jean,
It's great to see an update from you, and it's great to see that you have never had a relapse. I was able to resume eating dairy products without any GI issues, but I slowly developed osteoarthritis in several of the fingers of my right hand. When I ordered an EnteroLab test, sure enough, I was producing antibodies to casein. So I cut casein back out of my diet.
I suspect that after we have years of healing, many (not all) of us may be able to tolerate fair-sized "incidents" without having a reaction, but we all have limits. For example, last fall I had a short flare that was triggered by a second kidney stone that came along 3 weeks after the first. The first one didn't cause any problems, but the second one triggered an MC flare for a few days.
We have several members who are taking Anti-TNF drugs. To the best of my knowledge, all of them were taking the drugs before they joined the board (and possibly before their MC diagnosis), and none of them were ever able to achieve remission from their MC symptoms, despite following a very strict, very limited diet. Most of them were taking the drugs to treat issues such as psoriatic arthritis, I believe. In fact a couple of them even commented that their MC symptoms were worse for about a week after they received their monthly (or whatever the treatment interval was) infusion of the drug. Consequently I have to conclude that the Anti-TNF drugs don't seem to work for MC.
We also have several members taking Imuran. They report generally good results, but apparently they all have individual limits on how decadent they can allow their diet to become before they experience symptoms (if I am interpreting their posts correctly). IOW, Imuran seems to at least allow for minor dietary transgressions. If you would like to look up some of their posts, I can remember the usernames of at least one in each drug class.
In general, most of us seem to have had to eliminate a few more foods from our diet than we have been able to add, but that's not necessarily chiseled in stone. I'm referring to long-term results here. There are always a few members who discover that after they heal a while, they can tolerate some of their food sensitivities, at least for a while. And of course there is always the possibility of a spontaneous remission for an indefinite length of time. But in the long run, not sticking to our diet almost always comes back to bite us you-know-where. As a general rule, there are no free lunches with MC.
Thanks for posting. It's good to see a post from you again,
Tex
It's great to see an update from you, and it's great to see that you have never had a relapse. I was able to resume eating dairy products without any GI issues, but I slowly developed osteoarthritis in several of the fingers of my right hand. When I ordered an EnteroLab test, sure enough, I was producing antibodies to casein. So I cut casein back out of my diet.
I suspect that after we have years of healing, many (not all) of us may be able to tolerate fair-sized "incidents" without having a reaction, but we all have limits. For example, last fall I had a short flare that was triggered by a second kidney stone that came along 3 weeks after the first. The first one didn't cause any problems, but the second one triggered an MC flare for a few days.
We have several members who are taking Anti-TNF drugs. To the best of my knowledge, all of them were taking the drugs before they joined the board (and possibly before their MC diagnosis), and none of them were ever able to achieve remission from their MC symptoms, despite following a very strict, very limited diet. Most of them were taking the drugs to treat issues such as psoriatic arthritis, I believe. In fact a couple of them even commented that their MC symptoms were worse for about a week after they received their monthly (or whatever the treatment interval was) infusion of the drug. Consequently I have to conclude that the Anti-TNF drugs don't seem to work for MC.
We also have several members taking Imuran. They report generally good results, but apparently they all have individual limits on how decadent they can allow their diet to become before they experience symptoms (if I am interpreting their posts correctly). IOW, Imuran seems to at least allow for minor dietary transgressions. If you would like to look up some of their posts, I can remember the usernames of at least one in each drug class.
In general, most of us seem to have had to eliminate a few more foods from our diet than we have been able to add, but that's not necessarily chiseled in stone. I'm referring to long-term results here. There are always a few members who discover that after they heal a while, they can tolerate some of their food sensitivities, at least for a while. And of course there is always the possibility of a spontaneous remission for an indefinite length of time. But in the long run, not sticking to our diet almost always comes back to bite us you-know-where. As a general rule, there are no free lunches with MC.
Thanks for posting. It's good to see a post from you again,
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 knew in my heart that would be the answer. Sometimes I get so sick of this diet. It sure beats being sick though!
How are you!? I think about you often. My life is good. I'm still working as a horticulturalist at the golf courses and still take my border collie to work everyday to chase geese. I can retire in two years, but doubt I will. It's good to know I have the option.
My oldest just got her PhD in pharmacology and is hoping to run clinical trials. She moved from Tucson to Boston a month ago. My youngest is an ICU nurse in St. Louis, MO. She's working on her masters.
I am proud of my kids and amazed that I produced them.
I'm so glad to hear from you too!
Jean
I knew in my heart that would be the answer. Sometimes I get so sick of this diet. It sure beats being sick though!
How are you!? I think about you often. My life is good. I'm still working as a horticulturalist at the golf courses and still take my border collie to work everyday to chase geese. I can retire in two years, but doubt I will. It's good to know I have the option.
My oldest just got her PhD in pharmacology and is hoping to run clinical trials. She moved from Tucson to Boston a month ago. My youngest is an ICU nurse in St. Louis, MO. She's working on her masters.
I am proud of my kids and amazed that I produced them.
I'm so glad to hear from you too!
Jean
Be kind to everyone, because you never know what battles they are fighting.
Jean,
I have healed enough to be adding things back. I'm basing my first foods on the SCD. Have started with aged cheese, etc. Like you, I get achy from too much carbs. Previously I thought it was from small amounts of gluten contamination in my gf flour, since I have discovered whatever I bake with gf flour still has too many carbs.
I have healed enough to be adding things back. I'm basing my first foods on the SCD. Have started with aged cheese, etc. Like you, I get achy from too much carbs. Previously I thought it was from small amounts of gluten contamination in my gf flour, since I have discovered whatever I bake with gf flour still has too many carbs.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Jean,
I'm doing good. I've had a few health issues now and then, but in general I'm probably doing better than I deserve.
Wow! Your border collie has the dream job of any dog. It's not easy to visualize a happier way for a border collie to spend the day.
You definitely did a great job raising your 2 daughters. You certainly didn't raise any slackards. They are positioned to make the world a better place to live in
Your lists of foods and food ingredients that should be avoided have withstood the test of time. Many members still use them regularly for references during shopping trips.
We've discovered a few new treatment aids that help in certain difficult cases, such as antihistamines for the many of us who have mast cell activation disorder, and methylation treatments for some of us who have certain gene mutations (methylenetetrahydrofolate reductase mutations) that affect our metabolism of certain vitamins, minerals, medications, etc.
Tex
I'm doing good. I've had a few health issues now and then, but in general I'm probably doing better than I deserve.
Wow! Your border collie has the dream job of any dog. It's not easy to visualize a happier way for a border collie to spend the day.
You definitely did a great job raising your 2 daughters. You certainly didn't raise any slackards. They are positioned to make the world a better place to live in
Your lists of foods and food ingredients that should be avoided have withstood the test of time. Many members still use them regularly for references during shopping trips.
We've discovered a few new treatment aids that help in certain difficult cases, such as antihistamines for the many of us who have mast cell activation disorder, and methylation treatments for some of us who have certain gene mutations (methylenetetrahydrofolate reductase mutations) that affect our metabolism of certain vitamins, minerals, medications, etc.
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.
-
seeljanerun
- Adélie Penguin
- Posts: 73
- Joined: Wed Aug 14, 2013 11:33 am
In order for inflammation of joints to occur, both incomplete digestion of carbs (resulting in short-chain peptides rather than only individual amino acids) and increased intestinal permeability must be present. The peptides are allowed by the leaky gut to escape into the bloodstream, where they are carried to the joints and deposited, to cause inflammation (since they are foreign objects and therefore out of place in those locations).
Tex
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.
-
seeljanerun
- Adélie Penguin
- Posts: 73
- Joined: Wed Aug 14, 2013 11:33 am
Thanks Tex.
It appears us MC-ers get the short end of the stick in a lot of ways :(
I also found a thread about the association between klebsiella & starch consumption with AS & IBS/Chrons... I know I have klebsiella + HLA B27 gene so wondering if that's an additional factor factor for me or not...
I also wonder what the incidence of Ankylosing S. is in those of us with MC..
In any case, limiting carbohydrate consumption is probably health promoting for most of us, just for me its a stickler because I love to run and have been trying to find ways to get my carb consumption higher to support energy levels
It appears us MC-ers get the short end of the stick in a lot of ways :(
I also found a thread about the association between klebsiella & starch consumption with AS & IBS/Chrons... I know I have klebsiella + HLA B27 gene so wondering if that's an additional factor factor for me or not...
I also wonder what the incidence of Ankylosing S. is in those of us with MC..
In any case, limiting carbohydrate consumption is probably health promoting for most of us, just for me its a stickler because I love to run and have been trying to find ways to get my carb consumption higher to support energy levels
Jane