Thank God I found this site! My doc was NOT helpful at all!
I'm new here but have been dealing with LC for years. I had it mildly for about 2 years, (didn't know) then the giant woke up on vacation and the gates of hell were opened. I've been dealing with some serious issues for about a year after the doc diagnosed it gave meds and basically said you'll be better. Well after three rounds of meds for 9 months it was better. But always had to be where a bathroom was, and I always had anti-diarrhea meds handy. It was barely manageable. Doc just wanted to do more test...
But found this place and at the first of this year got a nutritionist and we started working together and my bowels haven't been this great since...long time.
I've learned some triggers and trying to stay away. But this is my question
Does it ever go away? Or does it just sleep? Will I ever get to have a salad again?
Ginny
Remission? Or sleeping giant?
Hello Ginny,
Welcome to our Internet family. I'm sorry that your doc has not been helpful, but unfortunately that seems to be the common. Gastroenterologists are still not properly trained to treat this disease.
To answer your questions, like the other IBDs, MC can occasionally go into spontaneous remission, but it seems less likely to do so than the other IBDs. Based on the experiences of the members of this discussion forum, it appears that only a relatively small percentage of patients is likely to enjoy occasional episodes of spontaneous remission. For most of us, we have to "treat" the disease at all times or suffer the consequences. IOW, the disease cannot be cured, but it can certainly be controlled by a proper treatment program. Regarding the prospects of enjoying a salad . . . sure, if you are willing to eliminate from your diet all of the foods that are causing your immune system to produce antibodies, and allow your digestive system to heal for a year or so, you should be able to reintroduce many foods into your diet, including salads.
But salads are just a victim of collateral damage — the reason why your intestines are inflamed is because like the rest of us, you are almost certainly very sensitive to gluten, and probably 1 or 2 other foods, even though your celaic screening tests were surely negative. Doctors have no officially approved way to detect or diagnose the type of non-celiac gluten sensitivity that is associated with MC, and that's the main reason why they are unable to effectively treat the disease.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. I'm sorry that your doc has not been helpful, but unfortunately that seems to be the common. Gastroenterologists are still not properly trained to treat this disease.
To answer your questions, like the other IBDs, MC can occasionally go into spontaneous remission, but it seems less likely to do so than the other IBDs. Based on the experiences of the members of this discussion forum, it appears that only a relatively small percentage of patients is likely to enjoy occasional episodes of spontaneous remission. For most of us, we have to "treat" the disease at all times or suffer the consequences. IOW, the disease cannot be cured, but it can certainly be controlled by a proper treatment program. Regarding the prospects of enjoying a salad . . . sure, if you are willing to eliminate from your diet all of the foods that are causing your immune system to produce antibodies, and allow your digestive system to heal for a year or so, you should be able to reintroduce many foods into your diet, including salads.
But salads are just a victim of collateral damage — the reason why your intestines are inflamed is because like the rest of us, you are almost certainly very sensitive to gluten, and probably 1 or 2 other foods, even though your celaic screening tests were surely negative. Doctors have no officially approved way to detect or diagnose the type of non-celiac gluten sensitivity that is associated with MC, and that's the main reason why they are unable to effectively treat the disease.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome Ginny
sleeping giant is a good term - MC is for life per say, albeit lots of people can attain stable, long term remission with the right MC Management plan.
there are some here, that have ongoing niggly symptoms and tend to have a sensitive digestion. (i am one of those)
Even though medically my MC is 'in remission' I have not been able to have raw salads again. I have lots of ingredients that are sometimes foods that I can only have 1-2 serves a week, and only on good weeks when external influences are not causing inflammation
hope this helps
sleeping giant is a good term - MC is for life per say, albeit lots of people can attain stable, long term remission with the right MC Management plan.
there are some here, that have ongoing niggly symptoms and tend to have a sensitive digestion. (i am one of those)
Even though medically my MC is 'in remission' I have not been able to have raw salads again. I have lots of ingredients that are sometimes foods that I can only have 1-2 serves a week, and only on good weeks when external influences are not causing inflammation
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
The sleeping giant makes me nervous
I have found that I might get by eating one sorta triggering food, but can't get by with two, and 3 well... The giant wakes up! This board has helped me a lot to find foods that are troublesome. And I have found many, cutting down on gluten has helped(even though doc said it wouldn't because test was neg.) this form helped me re-think some things.
When the original symptoms for me came so hard and fast and seeming sudden, I was scared. I knew something was wrong. So now I'm a little afraid to go on certain trips or events where the symptoms might suddenly hit again in like manner as when I was first diagnosed. After the first round of meds Doc said I should be better/healed afterwards. ( I was better but not healed) shortly afterwards I was on a trip and innocently ate a small spinach salad for dinner....which I paid for all night, which set off the chain reaction. It was very complicating to get meds from doc when in another state. With that example plus I have several others like most people here, I feel like I never know when the giant could wake up and turn my life sideways.
If you generally watch your diet, and stay away from bad triggers, and are somewhat stable, do the symptoms come on as strong as original symptoms? At this point I feel like if I had a reaction I could get control of it. But am I just lying to myself? What kinds of flare ups to others have? Are they as bad as original symptoms?
Ginny
When the original symptoms for me came so hard and fast and seeming sudden, I was scared. I knew something was wrong. So now I'm a little afraid to go on certain trips or events where the symptoms might suddenly hit again in like manner as when I was first diagnosed. After the first round of meds Doc said I should be better/healed afterwards. ( I was better but not healed) shortly afterwards I was on a trip and innocently ate a small spinach salad for dinner....which I paid for all night, which set off the chain reaction. It was very complicating to get meds from doc when in another state. With that example plus I have several others like most people here, I feel like I never know when the giant could wake up and turn my life sideways.
If you generally watch your diet, and stay away from bad triggers, and are somewhat stable, do the symptoms come on as strong as original symptoms? At this point I feel like if I had a reaction I could get control of it. But am I just lying to myself? What kinds of flare ups to others have? Are they as bad as original symptoms?
Ginny
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
For majority of people, if you avoid majority of your triggers, follow low inflammation gut healing lifestyle, you have healthy cells for healing (things like Vit D3 and magnesium etc) then the gut can heal and reactions to triggers will reduce.
keeping in mind, MC reactions can be like an overflow bucket, small amounts here and there dont seem to cause issues. multiple inputs or major input (like highly emotional stress event) and chaos can return.
maintaining the right MC management plan and avoiding major triggers as much as possible means we have better chance of coping with any major events
keeping in mind, MC reactions can be like an overflow bucket, small amounts here and there dont seem to cause issues. multiple inputs or major input (like highly emotional stress event) and chaos can return.
maintaining the right MC management plan and avoiding major triggers as much as possible means we have better chance of coping with any major events
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I couldn't agree more....did really well all Winter long and as soon as I got too much histamine build up going on because of the high pollen Spring were having and I had a major flare....backed off on all kinds of things as if trying to paddle up stream just to stop the immune system from revving up so far I may not get it to a good level. It has taken a good strong 3 weeks and I have some control once again, but it meant going back to safe foods, backing off all supplements except Mag and VitD3, getting ample good sleep at night and rearranging any projects I thought I would be doing that could be over doing it persay.keeping in mind, MC reactions can be like an overflow bucket, small amounts here and there dont seem to cause issues. multiple inputs or major input (like highly emotional stress event) and chaos can return.
I even went thru a pity pot period because it really felt I had failed in the healing dept. I realize it is the ups and downs of this syndrome and I need to take notes as to how certain times of the year affect me and do my best to work around that the next time it comes around.
Hang in there.....I'm finding it is doable, but like yourself I sure don't find it exciting to be somewhere and not have the comforts of a bathroom nearby if the MC is going to be sporadic just because.
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Ginny,
Here are some links to some short articles that provide some basic information about mast cells, and how mast cell issues are associated with microscopic colitis:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Tex
Here are some links to some short articles that provide some basic information about mast cells, and how mast cell issues are associated with microscopic colitis:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
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.