Newly Diagnosed MC
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-
greek12see
- Posts: 1
- Joined: Fri Feb 20, 2009 10:58 am
- Location: Summerville, SC
Newly Diagnosed MC
I have had, what I thought was IBS, for 15+ years and have just lost my brother to colon cancer at age 44 (he was initially diagnosed at 38) and I went to a new GI for the first time for a colonoscopy. Although the colonoscopy was clear, he decided to do some biopsy's while he was in there. He called me on Monday and told me that I have MC. He started me on Entocort but after reading so much information over the last few days, I see that this may only be a temporary fix. I am unsure of how long he will keep me on the Entocort but I will see him again on Wednesday. It looks like gluten free is the best route to be able to live a normal life. I can't believe that I am only 38 years old and have lived this long like this! Can anyone make me feel better about things and share their experience with me? I hope I had found a place of peace here on this forum. I am really bummed out!
Greek12see in South Carolina
Greek12see
WELCOME, you have definitely found the right place. I just found this home about 3 weeks ago and I have learned so much from these wonderful people. Everyone here is so kind and supportive.
I have had d all my life (I'm 47) and finally I thought I had celiac's d. So about 5 years ago I had a colonoscopy (no biopsy) and endoscopy, which came back negative. I went gluten free and lactose fee anyway. Then about 3 years ago I started having watery explosive d over 20 times a day and finally my GI did a colonoscopy last June and did a biopsy and I found out I had cc or mc. I was on every drug and nothing worked for me, I was getting ready to go to Mayo Clinic (my GI doesn't think diet has anything to do with mc) and then I found this wonderful place. I found out that soy was also a trigger so I eliminated soy and I am having solid bm and going maybe 4 or 5 times a day. All I can tell you is to go gluten free, dairy free and soy free and I am sure you will see a change.
I can't tell you how much this group means to me. I am sure that Tex will be along soon and he is such a wealth of information.
Love,
Rose
WELCOME, you have definitely found the right place. I just found this home about 3 weeks ago and I have learned so much from these wonderful people. Everyone here is so kind and supportive.
I have had d all my life (I'm 47) and finally I thought I had celiac's d. So about 5 years ago I had a colonoscopy (no biopsy) and endoscopy, which came back negative. I went gluten free and lactose fee anyway. Then about 3 years ago I started having watery explosive d over 20 times a day and finally my GI did a colonoscopy last June and did a biopsy and I found out I had cc or mc. I was on every drug and nothing worked for me, I was getting ready to go to Mayo Clinic (my GI doesn't think diet has anything to do with mc) and then I found this wonderful place. I found out that soy was also a trigger so I eliminated soy and I am having solid bm and going maybe 4 or 5 times a day. All I can tell you is to go gluten free, dairy free and soy free and I am sure you will see a change.
I can't tell you how much this group means to me. I am sure that Tex will be along soon and he is such a wealth of information.
Love,
Rose
Hi,
And welcome to our internet family. I'm sorry to hear that it took so long to find a GI doc who had at least heard of MC before, but that seems to be a common problem with the disease. You can't diagnose it unless you look for it by means of biopsy samples, and most doctors fail to do that.
Here are the facts. The bad news is that MC cannot be cured - once the genes are triggered, the disease can "flare" continuously, or, like the other inflammatory bowel diseases, (IBDs), it can wax and wane, over time. The good news is that it can definitely be controlled, so yes, you can get your life back.
Actually, many patients are able to use Entocort to get their symptoms under control, and then use a reduced dose, as a maintenance dose, to maintain remission, for long-term use. A "safer" approach, (as far as side effects, etc., are concerned), is to use diet restrictions to maintain remission. As Rose pointed out, most GI docs will argue that diet has nothing to do with MC, (or the other IBDs), but we have found that they are absolutely wrong about that, and many of us here have achieved remission by diet alone, and we also successfully maintain our remission by diet alone. Therefore, you have good reason to be optimistic.
Please don't feel like the Lone Ranger, for having to suffer so many years before being properly diagnosed - many of us have had a similar experience. Also, this is not a disease of "older" people, as the major medical institutions claim. We have many members younger than you - our youngest was a little over 2 years of age, when diagnosed, (actually she's not really a member, her mother is, of course), but she responded to the gluten-free, dairy-free, soy-free diet very quickly, and she really surprised her doctors by how soon she was able to achieve remission, after her mother modified her diet.
Please feel free to ask anything - we've all been there, done that, as you can imagine, so we understand. We have found that no one seems to understand this disease, unless they actually have it.
Again, welcome aboard, and consider this to be the first day of your journey back to health.
Tex (Wayne)
And welcome to our internet family. I'm sorry to hear that it took so long to find a GI doc who had at least heard of MC before, but that seems to be a common problem with the disease. You can't diagnose it unless you look for it by means of biopsy samples, and most doctors fail to do that.
Here are the facts. The bad news is that MC cannot be cured - once the genes are triggered, the disease can "flare" continuously, or, like the other inflammatory bowel diseases, (IBDs), it can wax and wane, over time. The good news is that it can definitely be controlled, so yes, you can get your life back.
Actually, many patients are able to use Entocort to get their symptoms under control, and then use a reduced dose, as a maintenance dose, to maintain remission, for long-term use. A "safer" approach, (as far as side effects, etc., are concerned), is to use diet restrictions to maintain remission. As Rose pointed out, most GI docs will argue that diet has nothing to do with MC, (or the other IBDs), but we have found that they are absolutely wrong about that, and many of us here have achieved remission by diet alone, and we also successfully maintain our remission by diet alone. Therefore, you have good reason to be optimistic.
Please don't feel like the Lone Ranger, for having to suffer so many years before being properly diagnosed - many of us have had a similar experience. Also, this is not a disease of "older" people, as the major medical institutions claim. We have many members younger than you - our youngest was a little over 2 years of age, when diagnosed, (actually she's not really a member, her mother is, of course), but she responded to the gluten-free, dairy-free, soy-free diet very quickly, and she really surprised her doctors by how soon she was able to achieve remission, after her mother modified her diet.
Please feel free to ask anything - we've all been there, done that, as you can imagine, so we understand. We have found that no one seems to understand this disease, unless they actually have it.
Again, welcome aboard, and consider this to be the first day of your journey back to health.
Tex (Wayne)
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.
Welcome to a neighbor. I live in N. Charleston. Was diagnosed with MC (specifically, collagenous colitis) three years ago. Found this website 11/08 after a severe flare complicated by an allergic reaction to Entocort. Now using gluten, soy free diet and doing pretty well. The "Potty People" are very supportive and, our Grand Poobah, Tex, is an unending source of knowledge and support. Very sorry you lost your brother at such a young age. I lost mine when he was several years older, but I wasn't ready to say good-bye. Learn all you can about MC and never doubt that you know your body far better than any physician ever will! Feel better real soon. Shekoe
Hi,
Welcome! You'll find that many of us suffered from what we thought and were told was IBS for years before being diagnosed with MC. Sounds like your symptoms started in your early 20s. My D started when I was 21, although I had other symptoms, like abdominal pain, for years before that. Unfortunately, most MDs know very little about MC, so they assume it is a disease of older people, probably because more older people actually have biopsies. In any case, you're not alone anymore!
Courtney
Welcome! You'll find that many of us suffered from what we thought and were told was IBS for years before being diagnosed with MC. Sounds like your symptoms started in your early 20s. My D started when I was 21, although I had other symptoms, like abdominal pain, for years before that. Unfortunately, most MDs know very little about MC, so they assume it is a disease of older people, probably because more older people actually have biopsies. In any case, you're not alone anymore!
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
you will see that you found the very best place to get help and support.
Hi there Greek12!
You've had a lot of stress lately, so I would imagine that has increased your "IBS" symptoms quite a bit lately. I'm so sorry to hear about your brother, and at such a young age. Also, that you've had to live with this during the earlier years of life when you're supposed to not have to worry about bodily functions.
It appears from those of us who've had the full gene testing with the lab that Enterolab has do that testing (not just the main two genes for celiac disease that the regular labs do initially), that there's a relationship between the gene combinations one has and the particular food sensitivities that one has. For instance, my sister and I have the exact same gene pair, and the exact same food sensitivities, as does a member who used to visit at the old site. (Some of you oldies will remember the nurse practitioner from Mass. who was there for a while.)
I would like to see Dr. Fine publish (perhaps on his website, if he hasn't already), a verificiation of my observations with the few people I've known with my gene pair, and the gene pairs of others. He's got thousands of patients from which to get this information, so a compilation of data from all those folks should be fairly definitive in verifying my theory, which is all it is right now, as far as I know.
Anyway, regardless of what the outcome of that would be, we know that the specific foods that any given one of us have delayed immunological reactions to is a very individual matter, BUT, the common thread among just about every one of us is GLUTEN.
From reading here, it appears that soy is third behind gluten and dairy casein, followed by eggs. Yeast is something that we can never remove entirely as it's found naturally on various fruits and vegetables, but those of us who test positively for that, seem to do just fine, once we're strictly off the other particular "allergens" that are "easier" to isolate and remove from our diets.
When you have all of the common food sensitivities that Enterolab tests for as my sister and I do, then getting any of the species that is also known as dietary yeast (baker's yeast) is pretty much a moot question without the baked goods that require it, even the gf versions.
Brewer's yeast is the same species as baker's yeast, but that's a moot question for us as my sister and I don't drink anyway. They do have gf beers these days, that my buds tell me is pretty good. It looks like a urine specimen to me, but whatever floats your boat, I guess! Ha! They just divy(sp) up a case, and share it among themselves for an occasional treat, I suppose, as it's expensive to buy it that way as an individual.
For those who do drink, and drink wine, it would be best to chose dry over other wines as in the dry ones, the bugs have eaten up all the sugar, and then died -- serves 'em right! Ha!
However, get a good one -- not cheat -- that only has the natural nitrites/nitrates (I can never remember which it is in different things), and if you have trouble with migraines, remember that the collective amount of that particular chemical can trigger a bad migraine, as can msg, and other excitotoxins. Those of us with more permeable guts, also tend to have more permeable blood brain barriers which makes our brains more susceptible to these effects, with other possible contributors to the headaches as well.
When, in the early stages of trying to eliminate anything that MIGHT be a problem, I remember just getting off anything fermented at all, like bottled sauces such as gf Worchestershire, etc. I ended up being off of San-J gf soy sauce eventually, any way, due to the soy alone anyway, but if soy turns out not to be a sensitivity for you, that's an excellent choice, and the soy from Japan may not be gmo like the soys grown here -- that could make a difference, but I wouldn't just assume that if you test positive for soy. I have chose to just leave it off. Instead, I use roasted peanut oil in stir fries, and you can add gf corn starch to give it that good ole Asian flavor, provided corn doesn't bother you -- might hold off on too much corn for a while as it tends to cause gas in perfectly normal guts. Just test the non-allergens and see if it makes a difference for a while after you've eaten it.
The main takeaway from this is that you are not going to necessarily have EVERY food sensitivity that is listed here, so be very careful not to eliminate something that will limit your diet unnecessarily. If you feel you can afford it, you might want to do the stool testing through Enterolab, but most likely your insurance won't cover it. That's just a little easier and faster than trying to figure out what to not eat all at once. Even with those results, I tend to favor weaning one food at a time to allow the gut to get used to moving along gradually forming stools to allow the gut musculature to get stronger. I'm always a bit concerned that people going off of everything all at once, will tear something if they "go normal" all of a sudden. With years and years of diarrhea, the gut muscles go completely flabby, or so it feels the first time you try to push out a slightly formed stool. Also, going one at a time, gives you more time to focus on eliminating every possible source of each food, before cluttering one's brain with the next food's sources.
Try just eating simply at first, but varying cooking methods, oils, major allergen-free seasonings (call if you're not sure). If you need help with ideas, check here. Don't allow yourself to get so frustrated that you just give up.
Most of us not only hurt when we joined this group, but we had lots of fatigue, so we went for simple prep methods for meals at first. The fatigue seems to take about 6 months, but if you feel generally better, with that one exception, the hope begins to build, and will give you more energy to continue.
In my case, the scientific aspects were so fascinating, that was one thing that really got me "into it." I hardly ever think about the diet now, it's become so second nature. Also, even at good restaurants, I just don't think the food is as good as we make here. Think that's because I now get really good meats and other products. You'll become a real food expert before you are through, and not just about the food sensitivity part, either.
Be SURE to have your B-12 level and Vit D levels checked as well as keep up with your thyroid levels and other things that tend to be low with the malabsorption -- not just the ones from the large intestine, but also, the typical ones from the small intestine as you've most likely got malabsorption from there, regardless of the negative celiac results -- it's submicroscopic damage that leads to this I think. Might have to pay out of pocket, but I don't think so.
Also, despite being young, I would see if you can get a bone density test to catch any possible bone loss early. My bones were already pretty bad the first density test I had at an older age, and now, I have pretty bad osteoporosis which is serious. If you do this, be sure to become aggressive trying to stave off the bone loss as quickly and as long as you live. This is one of the most serious complications. Be aggressive about insisting on this test now.
B-12 deficiency can lead to neuro complications. If you have a level below 400, despite the ref range on the lab sheet, I suggest getting some Biochem sublingual B-12 from the healthfood store (Whole Foods has it), and doing that. That way, you won't have to go in for injections of B-12. It got my level up to mid-range. I think I may be absorbing it from food a little better, but I still take mine every once in a while. It's just good to know your starting point if you can swing it, and then, after taking B-12, go back for a recheck to see if it's effective in bringing your level up. You may begin to feel better once you start taking the B-12, by the way. Same for correcting a Vit D level, and follow-up test to make sure you are getting the right amounts.
Have to run. Wrote too much already.
Good luck to you.
Yours, Luce
You've had a lot of stress lately, so I would imagine that has increased your "IBS" symptoms quite a bit lately. I'm so sorry to hear about your brother, and at such a young age. Also, that you've had to live with this during the earlier years of life when you're supposed to not have to worry about bodily functions.
It appears from those of us who've had the full gene testing with the lab that Enterolab has do that testing (not just the main two genes for celiac disease that the regular labs do initially), that there's a relationship between the gene combinations one has and the particular food sensitivities that one has. For instance, my sister and I have the exact same gene pair, and the exact same food sensitivities, as does a member who used to visit at the old site. (Some of you oldies will remember the nurse practitioner from Mass. who was there for a while.)
I would like to see Dr. Fine publish (perhaps on his website, if he hasn't already), a verificiation of my observations with the few people I've known with my gene pair, and the gene pairs of others. He's got thousands of patients from which to get this information, so a compilation of data from all those folks should be fairly definitive in verifying my theory, which is all it is right now, as far as I know.
Anyway, regardless of what the outcome of that would be, we know that the specific foods that any given one of us have delayed immunological reactions to is a very individual matter, BUT, the common thread among just about every one of us is GLUTEN.
From reading here, it appears that soy is third behind gluten and dairy casein, followed by eggs. Yeast is something that we can never remove entirely as it's found naturally on various fruits and vegetables, but those of us who test positively for that, seem to do just fine, once we're strictly off the other particular "allergens" that are "easier" to isolate and remove from our diets.
When you have all of the common food sensitivities that Enterolab tests for as my sister and I do, then getting any of the species that is also known as dietary yeast (baker's yeast) is pretty much a moot question without the baked goods that require it, even the gf versions.
Brewer's yeast is the same species as baker's yeast, but that's a moot question for us as my sister and I don't drink anyway. They do have gf beers these days, that my buds tell me is pretty good. It looks like a urine specimen to me, but whatever floats your boat, I guess! Ha! They just divy(sp) up a case, and share it among themselves for an occasional treat, I suppose, as it's expensive to buy it that way as an individual.
For those who do drink, and drink wine, it would be best to chose dry over other wines as in the dry ones, the bugs have eaten up all the sugar, and then died -- serves 'em right! Ha!
However, get a good one -- not cheat -- that only has the natural nitrites/nitrates (I can never remember which it is in different things), and if you have trouble with migraines, remember that the collective amount of that particular chemical can trigger a bad migraine, as can msg, and other excitotoxins. Those of us with more permeable guts, also tend to have more permeable blood brain barriers which makes our brains more susceptible to these effects, with other possible contributors to the headaches as well.
When, in the early stages of trying to eliminate anything that MIGHT be a problem, I remember just getting off anything fermented at all, like bottled sauces such as gf Worchestershire, etc. I ended up being off of San-J gf soy sauce eventually, any way, due to the soy alone anyway, but if soy turns out not to be a sensitivity for you, that's an excellent choice, and the soy from Japan may not be gmo like the soys grown here -- that could make a difference, but I wouldn't just assume that if you test positive for soy. I have chose to just leave it off. Instead, I use roasted peanut oil in stir fries, and you can add gf corn starch to give it that good ole Asian flavor, provided corn doesn't bother you -- might hold off on too much corn for a while as it tends to cause gas in perfectly normal guts. Just test the non-allergens and see if it makes a difference for a while after you've eaten it.
The main takeaway from this is that you are not going to necessarily have EVERY food sensitivity that is listed here, so be very careful not to eliminate something that will limit your diet unnecessarily. If you feel you can afford it, you might want to do the stool testing through Enterolab, but most likely your insurance won't cover it. That's just a little easier and faster than trying to figure out what to not eat all at once. Even with those results, I tend to favor weaning one food at a time to allow the gut to get used to moving along gradually forming stools to allow the gut musculature to get stronger. I'm always a bit concerned that people going off of everything all at once, will tear something if they "go normal" all of a sudden. With years and years of diarrhea, the gut muscles go completely flabby, or so it feels the first time you try to push out a slightly formed stool. Also, going one at a time, gives you more time to focus on eliminating every possible source of each food, before cluttering one's brain with the next food's sources.
Try just eating simply at first, but varying cooking methods, oils, major allergen-free seasonings (call if you're not sure). If you need help with ideas, check here. Don't allow yourself to get so frustrated that you just give up.
Most of us not only hurt when we joined this group, but we had lots of fatigue, so we went for simple prep methods for meals at first. The fatigue seems to take about 6 months, but if you feel generally better, with that one exception, the hope begins to build, and will give you more energy to continue.
In my case, the scientific aspects were so fascinating, that was one thing that really got me "into it." I hardly ever think about the diet now, it's become so second nature. Also, even at good restaurants, I just don't think the food is as good as we make here. Think that's because I now get really good meats and other products. You'll become a real food expert before you are through, and not just about the food sensitivity part, either.
Be SURE to have your B-12 level and Vit D levels checked as well as keep up with your thyroid levels and other things that tend to be low with the malabsorption -- not just the ones from the large intestine, but also, the typical ones from the small intestine as you've most likely got malabsorption from there, regardless of the negative celiac results -- it's submicroscopic damage that leads to this I think. Might have to pay out of pocket, but I don't think so.
Also, despite being young, I would see if you can get a bone density test to catch any possible bone loss early. My bones were already pretty bad the first density test I had at an older age, and now, I have pretty bad osteoporosis which is serious. If you do this, be sure to become aggressive trying to stave off the bone loss as quickly and as long as you live. This is one of the most serious complications. Be aggressive about insisting on this test now.
B-12 deficiency can lead to neuro complications. If you have a level below 400, despite the ref range on the lab sheet, I suggest getting some Biochem sublingual B-12 from the healthfood store (Whole Foods has it), and doing that. That way, you won't have to go in for injections of B-12. It got my level up to mid-range. I think I may be absorbing it from food a little better, but I still take mine every once in a while. It's just good to know your starting point if you can swing it, and then, after taking B-12, go back for a recheck to see if it's effective in bringing your level up. You may begin to feel better once you start taking the B-12, by the way. Same for correcting a Vit D level, and follow-up test to make sure you are getting the right amounts.
Have to run. Wrote too much already.
Good luck to you.
Yours, Luce
Welcome to our group. It sure sounds like you have had it rough. I know the stress of caring for, and then losing my Mom, just over a year ago sure didn't help me maintain what remission I had achieved. I have used Entocort for major flares. The longest I have used it was 6 months.
I also know that this whole adventure may seem overwhelming. (I keep my sanity over this by viewing it as an adventure.) We are all here to help, if you need it. Also, there is no question too gross to ask. I know the first time I had to clean up the whole bathroom I felt intimidated. I had not found a site on the internet so didn't have the support that is provided here.
If you are looking for some ideas of what to eat, scroll down on the forum index and look for Dee's Kitchen. She is a professional chef and has to cook gluten free. Her recipes are great. If you have trouble finding an ingredient she's also very helpful in that area also.
Jan
I also know that this whole adventure may seem overwhelming. (I keep my sanity over this by viewing it as an adventure.) We are all here to help, if you need it. Also, there is no question too gross to ask. I know the first time I had to clean up the whole bathroom I felt intimidated. I had not found a site on the internet so didn't have the support that is provided here.
If you are looking for some ideas of what to eat, scroll down on the forum index and look for Dee's Kitchen. She is a professional chef and has to cook gluten free. Her recipes are great. If you have trouble finding an ingredient she's also very helpful in that area also.
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi