I was first diagnosed with MC LC in May of 2015. From the start I was skeptical of my diagnosis (maybe in denial), went to another doctor in the late summer he did not do much, but tell me all symptoms are different. Finally in December I went to another doctor, he said he did not think I had MC, because it is something that happens in older people and in people who take alot of aspirin (I've come to learn this is an old study and anyone can get it). He performed an endoscopy found I have too much bile in my stomach and chronic inflammation aka chronic gastritis he was even throwing around irritable bowel. My BM are anywhere from 2-5 times a day, they are usually not formed. He put me on a prescription probiotic and acid blocker (which now I know I should not be taking). I'm also seeing a nutritionist and taking some supplements to help with inflammation.
Right now I'm at a loss and not sure what to be doing. I've eliminated alot of food and keep a food journal. I'm thinking about the lab testing.
I'm 34 and would like to have a second child soon ( I have a daughter who is 3). Has anyone had any complications with MC and pregnancy? I have not spoken to my obgyn about this at all yet.
If anything thanks for listening, reading some of your stories gives me hope!!
Hi I'm a newbie
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Hi,
Welcome to our Internet family. Wow! Your area of the country is in dire straits regarding the availability of competent GI specialists. The docs you described seem pretty much lost when it comes to treating MC.
Controlling this disease can seem overwhelming at first, but we just have to take life 1 day at a time and learn as we go. The EnteroLab testing is very helpful for designing a recovery diet, but if you can't justify the expense it's possible to follow an exclusion diet until you reach remission, and then you can test foods one at a time to see if they are off limits for you. The tests can save a lot of time and worry, but they are not essential for recovery.
MC patients who become pregnant follow 1 of 2 possible courses — about half of them go into remission which typically lasts until lactation ceases, and the other half suffer a relapse or intensifying symptoms. Unfortunately there is no official (based on medical research) way to predict which is the most likely outcome. I have a theory that is related to mast cell issues that predicts that patients whose MC is mast cell-driven (rather than T cell-driven) tend to go into remission with pregnancy. And conversely, those whose MC is T cell-driven tend to have worsening symptoms. This theory is based on the fact that diamine oxidase enzyme concentrations in the placenta can reach approximately 500x normal levels during pregnancy.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. Wow! Your area of the country is in dire straits regarding the availability of competent GI specialists. The docs you described seem pretty much lost when it comes to treating MC.
Controlling this disease can seem overwhelming at first, but we just have to take life 1 day at a time and learn as we go. The EnteroLab testing is very helpful for designing a recovery diet, but if you can't justify the expense it's possible to follow an exclusion diet until you reach remission, and then you can test foods one at a time to see if they are off limits for you. The tests can save a lot of time and worry, but they are not essential for recovery.
MC patients who become pregnant follow 1 of 2 possible courses — about half of them go into remission which typically lasts until lactation ceases, and the other half suffer a relapse or intensifying symptoms. Unfortunately there is no official (based on medical research) way to predict which is the most likely outcome. I have a theory that is related to mast cell issues that predicts that patients whose MC is mast cell-driven (rather than T cell-driven) tend to go into remission with pregnancy. And conversely, those whose MC is T cell-driven tend to have worsening symptoms. This theory is based on the fact that diamine oxidase enzyme concentrations in the placenta can reach approximately 500x normal levels during pregnancy.
Histamine and histamine intoleranceIn pregnancy, DAO is produced at very high concentrations by the placenta (119, 120), and its concentration may become 500 times that when the woman is not pregnant (120). This increased DAO production in pregnant women may be the reason why, in women with food intolerance, remissions frequently occur during pregnancy (14).
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.
As far as the official medical views are concerned, you have T cell-based inflammation, because that's an essential part of the official medical description of MC, and it's specifically how you were diagnosed. Unfortunately some of the attributes of MC were incorrectly defined when MC was originally described, but they now seem to be chiseled in stone. For example, the original description of the disease states that MC is a disease of the colon (only), but we now know that the small intestine is almost always also inflamed (and there is plenty of documented medical research to verify this claim) but finding a GI doc who is aware of this is about as likely as winning the lottery.
The mast cell-based MC theory is strictly mine, so no doctor in the world is likely to even admit that it might be possible. They would have to see medical proof. The theory basically describes an alternative mechanism by which the inflammation that is associated with MC can be triggered and perpetuated in patients who have mast cell issues (such as mast cell activation disorder), independently of the T cell status that is used as a diagnostic marker for LC, and the collagen band thickness used as a diagnostic marker for CC. The theory is based on evidence that some MC cases are driven by mast cell activity, and even if T cell diagnostic criteria are met, the T cells are either irrelevant or they are a minor factor in the inflammation pattern. It will be discussed in detail in my next book on MC, but it will be a while before I finish it, because I currently have way too many irons in the fire that take up most of my time.
Tex
The mast cell-based MC theory is strictly mine, so no doctor in the world is likely to even admit that it might be possible. They would have to see medical proof. The theory basically describes an alternative mechanism by which the inflammation that is associated with MC can be triggered and perpetuated in patients who have mast cell issues (such as mast cell activation disorder), independently of the T cell status that is used as a diagnostic marker for LC, and the collagen band thickness used as a diagnostic marker for CC. The theory is based on evidence that some MC cases are driven by mast cell activity, and even if T cell diagnostic criteria are met, the T cells are either irrelevant or they are a minor factor in the inflammation pattern. It will be discussed in detail in my next book on MC, but it will be a while before I finish it, because I currently have way too many irons in the fire that take up most of my time.
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.