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Hi everyone. First - thank you so much for all of the very helpful information contained in this site! It's very overwhelming but I feel I have learned alot through reading through alot of the messages.
To make a long story short, about 6 years ago I started having terrible stomach problems - mainly D every day. I eventually had a colonoscopy, with no diagnosis except for ibs. The colonoscopy seemed to straighten things out for a while, but then the problems came back. I had a second colonoscopy last year, and again, nothing except inflammation. This was my second doctor. Still getting worse, stomach aches every day and D pretty much every morning. She put me on levbid and I stopped all dairy, and it got better for a bit, but then got worse again. I then went to a third doctor who I really like, who actually took the time to look through everything to see that the first doctor actually found MC but never told me. She started me on VSL#3 and that seemed to work for a while, but still going to the bathroom at least 4 times a day. Then I started about a month ago what seems to be a flare up - so she started me last week on Asacol. It doesn't seem to be doing much. So three days ago after reading through these posts I decided to try gluten free (which I didn't before because I tested negative for celiac, which I realize now is irrelevant). I had a couple of good days, but now I am back to some serious D which is so depressing because I haven't eaten any gluten or dairy - but I guess I have eaten corn, and nuts - but I sometimes eat these and am fine.
So, my questions are:
(1) Can you sometimes eat food and it doesn't bother you but sometimes it does? Like could I be nut sensitive and tolerate them sometimes?
(2) Sounds like the gluten-free diet takes awhile to work? How long before I give up?
(3) Should I test at Enterolab? And which panel should I do? Should I discuss with my doctor first before I do that? It's all so expensive.... but worth it if it will help me. I am so sad and tired of going to the bathroom 10+ times a day - especially when I am at work.
Thanks for any advice you can give.
a few questions from a new member
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi, Quesada - welcome! Sorry you're feeling awful - I (and so many of us) know how you feel, especially when at work. Not that there's a good time to be sticking so close to the bathroom. Sad and tired is probably putting it mildly at some moments. You're in the right place for sympathy as well as information.
You sure did the right thing firing your first 2 GI docs, since they should have known you have MC and told you - even if they had little understanding and experience of what that means.
You ask three excellent, clear questions - here's my take:
1) I think our "true" food sensitivities, though some may change over time, are pretty basic - some people have eliminated a food and been able to add it back years later (or lost a formerly safe food), but typically it's not day to day. HOWEVER, while you're in a big upset, all bets are off. My first week of my worst symptoms, it felt like a glass of water made me react. I went on total food lockdown, even for things I were pretty sure were no problem (and I turned out to be wrong about one of those). I had bananas, applesauce, homemade chickenbroth, and not much else, gradually adding cooked carrots and potatoes... Strangely, black coffee is fine for me - I skipped it a few days, added it back, and it makes no difference either way. The conventional wisdom isn't much good here in MC-land... and it's probably wrong out there in the rest of the world, too ;) So you may not have trouble with corn or nuts (or some nuts and not others), but it's too soon to tell, because you're in a flare-up. In both cases, it could just be the fiber aggravating your already distressed digestive tract. I'd lay off them for now, and later when your system is calm you can figure out whether they belong in your diet. (Some folks can use corn flour, but not eat corn on the cob, or use nut milk but not eat a handful of nuts.) I think of fiber kind of like salt scrub on a sunburn. Now that I'm healing, I am tolerating pretty normal amounts of fiber (I'm not going out of my way to add extra).
I eventually threw out all grains - even a small amount of rice made me react with bloating very quickly. I am now tolerating small amounts of rice occasionally, so I'm pretty sure that it's not a true problem food for me - except at a time when nothing was tolerable at all. I may be able to add those other grains back in but am in no rush to take any risks at all, now that I'm feeling good (and before our vacation trip at the end of June).
2) Some lucky people drop gluten and it's "like a switch" - they feel great in a very few days. That was not my experience, and it sounds like it's not the case for you, either. I felt inflamed from the inside of my nostrils and mouth right down through my whole digestive system, and that 'systemic outrage' didn't just settle back down in a few days. Some members here have used medications during their healing process. We all have different experiences - I was lucky that Pepto Bismol worked for me, though other people cannot tolerate it at the therapeutic dose (as much as 8/day - the capsules aren't so gross-tasting). It used to be recommended to do that for 8 weeks, but I was not comfortable with that idea, so reduced to 5/day pretty fast, then 3... I think I would have benefited from using it longer, but it worked out well for me.
3) You can discuss with your doctor, or do the Enterolab testing on your own. Some people here have figured out their dietary intolerances without Enterolab testing or any other proof of gluten intolerance besides their own experience. To do that, you have to eliminate almost everything and slowly add back foods to figure out which you can tolerate. That's more or less my approach - though I also did do the Enterolab testing. I did not find the "11 other foods" panel as useful or informative as the gluten, casein, soy, egg ones. I had the genetics test done and was surprised that I have a 'true' celiac gene and another for gluten sensitivity. I now wonder whether a lot of the health issues in relatives on both sides might be connected.
I hope that helps - I know you're probably overwhelmed with all you've been reading here. It took me days after I joined to post my first message. I was just gobsmacked that I has suspected gluten for years, and turned out to be right (with such a vengeance). I was too foggy with that last flare to finish a message , so you're off to a great start!
You will find your path to healing here, and you will get your life back. Again, welcome,
Sara
You sure did the right thing firing your first 2 GI docs, since they should have known you have MC and told you - even if they had little understanding and experience of what that means.
You ask three excellent, clear questions - here's my take:
1) I think our "true" food sensitivities, though some may change over time, are pretty basic - some people have eliminated a food and been able to add it back years later (or lost a formerly safe food), but typically it's not day to day. HOWEVER, while you're in a big upset, all bets are off. My first week of my worst symptoms, it felt like a glass of water made me react. I went on total food lockdown, even for things I were pretty sure were no problem (and I turned out to be wrong about one of those). I had bananas, applesauce, homemade chickenbroth, and not much else, gradually adding cooked carrots and potatoes... Strangely, black coffee is fine for me - I skipped it a few days, added it back, and it makes no difference either way. The conventional wisdom isn't much good here in MC-land... and it's probably wrong out there in the rest of the world, too ;) So you may not have trouble with corn or nuts (or some nuts and not others), but it's too soon to tell, because you're in a flare-up. In both cases, it could just be the fiber aggravating your already distressed digestive tract. I'd lay off them for now, and later when your system is calm you can figure out whether they belong in your diet. (Some folks can use corn flour, but not eat corn on the cob, or use nut milk but not eat a handful of nuts.) I think of fiber kind of like salt scrub on a sunburn. Now that I'm healing, I am tolerating pretty normal amounts of fiber (I'm not going out of my way to add extra).
I eventually threw out all grains - even a small amount of rice made me react with bloating very quickly. I am now tolerating small amounts of rice occasionally, so I'm pretty sure that it's not a true problem food for me - except at a time when nothing was tolerable at all. I may be able to add those other grains back in but am in no rush to take any risks at all, now that I'm feeling good (and before our vacation trip at the end of June).
2) Some lucky people drop gluten and it's "like a switch" - they feel great in a very few days. That was not my experience, and it sounds like it's not the case for you, either. I felt inflamed from the inside of my nostrils and mouth right down through my whole digestive system, and that 'systemic outrage' didn't just settle back down in a few days. Some members here have used medications during their healing process. We all have different experiences - I was lucky that Pepto Bismol worked for me, though other people cannot tolerate it at the therapeutic dose (as much as 8/day - the capsules aren't so gross-tasting). It used to be recommended to do that for 8 weeks, but I was not comfortable with that idea, so reduced to 5/day pretty fast, then 3... I think I would have benefited from using it longer, but it worked out well for me.
3) You can discuss with your doctor, or do the Enterolab testing on your own. Some people here have figured out their dietary intolerances without Enterolab testing or any other proof of gluten intolerance besides their own experience. To do that, you have to eliminate almost everything and slowly add back foods to figure out which you can tolerate. That's more or less my approach - though I also did do the Enterolab testing. I did not find the "11 other foods" panel as useful or informative as the gluten, casein, soy, egg ones. I had the genetics test done and was surprised that I have a 'true' celiac gene and another for gluten sensitivity. I now wonder whether a lot of the health issues in relatives on both sides might be connected.
I hope that helps - I know you're probably overwhelmed with all you've been reading here. It took me days after I joined to post my first message. I was just gobsmacked that I has suspected gluten for years, and turned out to be right (with such a vengeance). I was too foggy with that last flare to finish a message , so you're off to a great start!
You will find your path to healing here, and you will get your life back. Again, welcome,
Sara
Sara -
You are really nice to answer all my questions so quickly! Thank you. It is all very daunting. What a process to figure out what bothers you. Not easy with four kids and a part-time job! It's frustrating with me because it seems to be changing all the time - one day something seems fine (like I ate half the bag of nuts yesterday and had a great day, today I ate the other half and had to rush to the bathroom).
I guess it's a process - and trying to decide whether I should spend all of that money on the lab testing.
Thanks again,
Lisa
You are really nice to answer all my questions so quickly! Thank you. It is all very daunting. What a process to figure out what bothers you. Not easy with four kids and a part-time job! It's frustrating with me because it seems to be changing all the time - one day something seems fine (like I ate half the bag of nuts yesterday and had a great day, today I ate the other half and had to rush to the bathroom).
I guess it's a process - and trying to decide whether I should spend all of that money on the lab testing.
Thanks again,
Lisa
Hi Lisa,
Welcome to our internet family. Deciding whether or not to order stool tests is always worrisome, because the cost does add up. Most of us have found that it is money well spent, because Enterolab's tests are much more sensitive than blood tests, and they are much, much more accurate and reliable. If you have insurance, and your doctor orders the tests, some insurance companies will pay for the tests. Some won't, of course, and some doctors don't believe in stool tests for food sensitivities, because they don't keep up with current technology, or they're prejudiced against stool tests for one reason or another.
It's possible to determine food sensitivities by trial and error, and there are guidelines available in other forums on this board, but the stool tests take all the quesswork out of it, and save a lot of time and anxiety.
Regarding which tests to order, most of us are sensitive to gluten and casein, and about half of us are sensitive to soy. Those tests would be "gluten, (gliadin)", "milk, (casein)", and "soy". That adds up to $297. Rather than order individual tests, if you order Panel A, you can get the same tests, plus a free egg test, and save $20 on the deal, ($279 total). There are a lot of other test possibilities, and for some of us, it is good to determine which genes we have, since that may tell us what we may have passed on to our kids, and whether or not they are at risk of the same issues. Also, gene test results can sometimes tell us what additional issues we might be predisposed to, so that we can hopefully prevent them from developing. Panel B provides a good price for that combination, ($369 total), because the gene test is normally $149, by itself). Please make your own decisions on which tests you want, but this at least gives you some ideas about which ones to consider.
Unfortunately, the diet is not an overnight "cure". It takes most of us 6 months to a year to reach true remission using diet alone. That time can be shortened significantly, by combining your treatment with Entocort, or some other medicaton. The Entocort will mask the symptoms, while the diet helps to heal the gut, and after a while, the Entocort can be slowly phased out, so that from then on, (hopefully), you can control your symptoms by diet alone. Without insurance, though, Entocort is ridiculously expensive. However, a generic equivalent can be ordered from an overseas pharmacy, (alldaychemist), and the generic seems to work just as well as the expensive stuff. The patent on Entocort expired in mid-May, but I haven't heard if/when anyone is going to market a generic substitute here in this country.
Also, remember that while we are healing, we will have good days, and we will occasionally have bad days, but as time goes on, the good days tend to dominate, and the bad days become fewer and farther between, until we finally reach a state of stable remission.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. Deciding whether or not to order stool tests is always worrisome, because the cost does add up. Most of us have found that it is money well spent, because Enterolab's tests are much more sensitive than blood tests, and they are much, much more accurate and reliable. If you have insurance, and your doctor orders the tests, some insurance companies will pay for the tests. Some won't, of course, and some doctors don't believe in stool tests for food sensitivities, because they don't keep up with current technology, or they're prejudiced against stool tests for one reason or another.
It's possible to determine food sensitivities by trial and error, and there are guidelines available in other forums on this board, but the stool tests take all the quesswork out of it, and save a lot of time and anxiety.
Regarding which tests to order, most of us are sensitive to gluten and casein, and about half of us are sensitive to soy. Those tests would be "gluten, (gliadin)", "milk, (casein)", and "soy". That adds up to $297. Rather than order individual tests, if you order Panel A, you can get the same tests, plus a free egg test, and save $20 on the deal, ($279 total). There are a lot of other test possibilities, and for some of us, it is good to determine which genes we have, since that may tell us what we may have passed on to our kids, and whether or not they are at risk of the same issues. Also, gene test results can sometimes tell us what additional issues we might be predisposed to, so that we can hopefully prevent them from developing. Panel B provides a good price for that combination, ($369 total), because the gene test is normally $149, by itself). Please make your own decisions on which tests you want, but this at least gives you some ideas about which ones to consider.
Unfortunately, the diet is not an overnight "cure". It takes most of us 6 months to a year to reach true remission using diet alone. That time can be shortened significantly, by combining your treatment with Entocort, or some other medicaton. The Entocort will mask the symptoms, while the diet helps to heal the gut, and after a while, the Entocort can be slowly phased out, so that from then on, (hopefully), you can control your symptoms by diet alone. Without insurance, though, Entocort is ridiculously expensive. However, a generic equivalent can be ordered from an overseas pharmacy, (alldaychemist), and the generic seems to work just as well as the expensive stuff. The patent on Entocort expired in mid-May, but I haven't heard if/when anyone is going to market a generic substitute here in this country.
Also, remember that while we are healing, we will have good days, and we will occasionally have bad days, but as time goes on, the good days tend to dominate, and the bad days become fewer and farther between, until we finally reach a state of stable remission.
Again, welcome aboard, and please feel free to ask anything.
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.
Lisa,
I did not do the testing right away. I was just overwhelmed (and I don't have four kids, so I realize that I am a lightweight in the overwhelm department compared to what you're up to). It took me over a month, closer to two, before I ordered my tests. When you you make up your mind, you might want to consider the genetic testing, on behalf of your kids. If you have a celiac or gluten-sensitive gene, you might as well know that before they have symptoms, so you can be proactive (look how many docs you had to go through to get your story). (There are reasons not to wait for too long, but no reason why you have to figure that out today.)
For me, step one was - only eat what is super soothing. Chicken soup was my answer, and we were making it (and I was drinking it) like it was going out of style. Bananas were good; you might tolerate white rice or a cream-of-rice type of cereal. If nothing helps, you could consider trying Pepto Bismol on your own, or Entocort with your doctor's Rx and agreement (insurance copays really vary - it is expensive). Asacol didn't do much for me, and it does contain lactose, so if that is an issue for you, another drug in that category might be better. Some here have had difficulty even tolerating Asacol, but that was not the case for me.
Eventually many of us keep a diary of everything we eat (amount, time of day, etc.) and our symptoms. In the beginning, that overwhelmed me (just as you describe, it was impossible to figure out). So I set it aside until my head stopped spinning. But it's a very useful tool, and you might want to hunt around for a notebook, but not try to draw any conclusions till your system settles.
In a counterintuitive way, I found it *easier* just to pick a crazy-limited diet and stick to it for the short term. It was such a relief for me. My husband would say, "Do you want some __________?" No thanks! That period of my life was mercifully short, and I am enjoying food like a normal person. (Just not the same food I used to 'normally' eat.) I did not have to do that for a very long time. But if I did have to? At least I know I can. Until I felt better, I didn't really miss food anyway.
Clearly avoiding packaged/convenience foods eliminates many problems, and that's tough with 4 kids. You will find your own tricks (for a while I was boiling an extra potato with dinner, and having it for breakfast - which may sound dull, but not as dull as living on the toilet!). I haven't done that for a while, but actually a chunk of cold potato with almond butter isn't bad (my husband almost wept for me, but I liked it). You might avoid the oiliness of nuts for a while - oils tend to be upsetting to an already-upset system, and many of us tolerate them poorly in general. I'm doing OK with oils now, in moderation. The pantry/fridge/kitchen makeover is ongoing. Just when I think I've given away the last pound of pasta or whatever... I fish something out of the freezer and wonder how long it's been there. Very late spring cleaning ;)
One last thing (and soon I bet some other wonderful people here will chime in with their perspective) - it might not be the nuts that made you rush to the bathroom. Often, it's something we ate the day/night before. That's what makes it so hard to figure out, and that's why the food diary is such a great tool. Maybe it was the nuts - or maybe something else. Or maybe yesterday's nuts upset you today, in which case it might still not be the nuts themselves, but it could be the fiber. OR - if they came out of a bag, they might be seasoned with something in the fine print of ingredients. And (please don't let your head explode) if someone ate bread, and then fished around in the bag of nuts... that could do it. All this can take some time to process mentally (much less the pantry re-org). We've been at this for some months and are pretty good at it, but I believe I would be better off if we were even more rigorous, and my husband is willing to give it a try.
There are other moms here (and dads!), and they will be more helpful about adapting while also feeding kids. Some people have a largely gluten-free kitchen; in other houses, the gluten-free person has a corner of the kitchen, with known safe utensils, etc. (Since there are only 2 of us and my husband doesn't mind, I feel like it should be the other way around - let the gluten go hide out in the corner in "my" kitchen!) You don't have to get that figured that out in a hurry.
Best of luck, and ask any questions that come up, truly!
Sara
I did not do the testing right away. I was just overwhelmed (and I don't have four kids, so I realize that I am a lightweight in the overwhelm department compared to what you're up to). It took me over a month, closer to two, before I ordered my tests. When you you make up your mind, you might want to consider the genetic testing, on behalf of your kids. If you have a celiac or gluten-sensitive gene, you might as well know that before they have symptoms, so you can be proactive (look how many docs you had to go through to get your story). (There are reasons not to wait for too long, but no reason why you have to figure that out today.)
For me, step one was - only eat what is super soothing. Chicken soup was my answer, and we were making it (and I was drinking it) like it was going out of style. Bananas were good; you might tolerate white rice or a cream-of-rice type of cereal. If nothing helps, you could consider trying Pepto Bismol on your own, or Entocort with your doctor's Rx and agreement (insurance copays really vary - it is expensive). Asacol didn't do much for me, and it does contain lactose, so if that is an issue for you, another drug in that category might be better. Some here have had difficulty even tolerating Asacol, but that was not the case for me.
Eventually many of us keep a diary of everything we eat (amount, time of day, etc.) and our symptoms. In the beginning, that overwhelmed me (just as you describe, it was impossible to figure out). So I set it aside until my head stopped spinning. But it's a very useful tool, and you might want to hunt around for a notebook, but not try to draw any conclusions till your system settles.
In a counterintuitive way, I found it *easier* just to pick a crazy-limited diet and stick to it for the short term. It was such a relief for me. My husband would say, "Do you want some __________?" No thanks! That period of my life was mercifully short, and I am enjoying food like a normal person. (Just not the same food I used to 'normally' eat.) I did not have to do that for a very long time. But if I did have to? At least I know I can. Until I felt better, I didn't really miss food anyway.
Clearly avoiding packaged/convenience foods eliminates many problems, and that's tough with 4 kids. You will find your own tricks (for a while I was boiling an extra potato with dinner, and having it for breakfast - which may sound dull, but not as dull as living on the toilet!). I haven't done that for a while, but actually a chunk of cold potato with almond butter isn't bad (my husband almost wept for me, but I liked it). You might avoid the oiliness of nuts for a while - oils tend to be upsetting to an already-upset system, and many of us tolerate them poorly in general. I'm doing OK with oils now, in moderation. The pantry/fridge/kitchen makeover is ongoing. Just when I think I've given away the last pound of pasta or whatever... I fish something out of the freezer and wonder how long it's been there. Very late spring cleaning ;)
One last thing (and soon I bet some other wonderful people here will chime in with their perspective) - it might not be the nuts that made you rush to the bathroom. Often, it's something we ate the day/night before. That's what makes it so hard to figure out, and that's why the food diary is such a great tool. Maybe it was the nuts - or maybe something else. Or maybe yesterday's nuts upset you today, in which case it might still not be the nuts themselves, but it could be the fiber. OR - if they came out of a bag, they might be seasoned with something in the fine print of ingredients. And (please don't let your head explode) if someone ate bread, and then fished around in the bag of nuts... that could do it. All this can take some time to process mentally (much less the pantry re-org). We've been at this for some months and are pretty good at it, but I believe I would be better off if we were even more rigorous, and my husband is willing to give it a try.
There are other moms here (and dads!), and they will be more helpful about adapting while also feeding kids. Some people have a largely gluten-free kitchen; in other houses, the gluten-free person has a corner of the kitchen, with known safe utensils, etc. (Since there are only 2 of us and my husband doesn't mind, I feel like it should be the other way around - let the gluten go hide out in the corner in "my" kitchen!) You don't have to get that figured that out in a hurry.
Best of luck, and ask any questions that come up, truly!
Sara
Welcome Quesada!!
I also had a strange period of improvement after my colonoscopy. I think it's becuase all the bacteria were washed out and needed a few weeks to fully repopulate. Darn my flora!! Others actually get worse after colonoscopy. Your system is probably very inflamed right now, so anything with fiber (nuts, salad, corn, raw vegetables, raw fruit), and acid (citrus fruit) is likely to cause D. Are you 100% GF, reading all labels, etc? Hidden gluten could also aggravate things. I was lucky to have quick improvement after going GF, DF and soy free, but fiber and citric acid still bother me. It can take a year or longer to fully heal once you get your food sensitivities out of your diet. Even then, you often slip up, so it's a rollor coaster ride. I used Pepto tablets 3x day when I first tried to get this under control. I now use it when I have flare-ups. But it doesn't do very much. I've read of a few members not tolerating Asacol. In fact some had severe reactions to it, so keep an eye on that. Regular Asacol has lactose in it, which could also cause a flare-up. Asacol HD is lactose-free.
I had Eneterolab testing 2 years ago. I ordered the full package back then, which was gene testing, gluten, dairy, soy and yeast. I was able to pay for mine with my medical flex spending account from work (pre-tax).
Let us know what you decide to do!
I also had a strange period of improvement after my colonoscopy. I think it's becuase all the bacteria were washed out and needed a few weeks to fully repopulate. Darn my flora!! Others actually get worse after colonoscopy. Your system is probably very inflamed right now, so anything with fiber (nuts, salad, corn, raw vegetables, raw fruit), and acid (citrus fruit) is likely to cause D. Are you 100% GF, reading all labels, etc? Hidden gluten could also aggravate things. I was lucky to have quick improvement after going GF, DF and soy free, but fiber and citric acid still bother me. It can take a year or longer to fully heal once you get your food sensitivities out of your diet. Even then, you often slip up, so it's a rollor coaster ride. I used Pepto tablets 3x day when I first tried to get this under control. I now use it when I have flare-ups. But it doesn't do very much. I've read of a few members not tolerating Asacol. In fact some had severe reactions to it, so keep an eye on that. Regular Asacol has lactose in it, which could also cause a flare-up. Asacol HD is lactose-free.
I had Eneterolab testing 2 years ago. I ordered the full package back then, which was gene testing, gluten, dairy, soy and yeast. I was able to pay for mine with my medical flex spending account from work (pre-tax).
Let us know what you decide to do!
Lisa,
Yes - Entocort is an enteric corticosteroid - it's designed in such a way that the medicine is primarily in the digestive system, unlike a systemic steroid (like prednisone). The side effects are lower than with a systemic.
Asacol is also enteric-coated, and is an anti-inflammatory. A newer formulation, Lialda, seems to be less problematic for some.
We have now exhausted my entire knowledge of medication, unfortunately, and it didn't take long.
I know what you mean about the overwhelm of help and kindness here. I really was a basket case for days when I got here. I can assure you - this, too gets better.
Yes - Entocort is an enteric corticosteroid - it's designed in such a way that the medicine is primarily in the digestive system, unlike a systemic steroid (like prednisone). The side effects are lower than with a systemic.
Asacol is also enteric-coated, and is an anti-inflammatory. A newer formulation, Lialda, seems to be less problematic for some.
We have now exhausted my entire knowledge of medication, unfortunately, and it didn't take long.
I know what you mean about the overwhelm of help and kindness here. I really was a basket case for days when I got here. I can assure you - this, too gets better.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
HI there Lisa, welcome to the group,
there is loads of information to digest (pun intended) on this site. This forum is result of a wonderful caring people sharing information to help others.
my saying with MC is that there is no right way or wrong way, there is your way.
Although the symptoms and triggers amongst the group can be quite similar, there are aspects for each of us that is quite unique. What causes D for one person may not for another and treatment wise what works for one may not work for another, it can be slightly exhausting journey figuring all of that out, but the gift at the end is mangaement of symptoms and wellness, so I can assure you it is worth every bit of energy to get there.
I figured out my intolerances via elimination diet as i could not afford the testing at the time of diagnosis. this took me about 6 months or more, and there were lots of ups and downs with this process.
Prior to diagnosis i new that gluten, yeast and lactose were an issue and i had been having minimal amounts of those for over 10 years. It was eliminating all the hidden gluten, yeast that took a bit of time and the realising that Soy and Dairy were an issue and doing full elimination of them.
Regardless of what stage people are at, i highly recommend keeping a journal (we nicknamed it winning the pooh diary) of symptoms and reactions. what time you eat certain ingredients or what ingredients you eat at the same time can have relevance to reactions.
in my opinion, the best indicator of if something is good or not is listening to your body....
feel free to keep asking questions, generally at least one other person has had the same symptom or reaction, you are not on this journey alone
given the nature of the condition, this is the one place we can ask questions about gas, poop, etc and not feel self concious.
take care,
there is loads of information to digest (pun intended) on this site. This forum is result of a wonderful caring people sharing information to help others.
my saying with MC is that there is no right way or wrong way, there is your way.
Although the symptoms and triggers amongst the group can be quite similar, there are aspects for each of us that is quite unique. What causes D for one person may not for another and treatment wise what works for one may not work for another, it can be slightly exhausting journey figuring all of that out, but the gift at the end is mangaement of symptoms and wellness, so I can assure you it is worth every bit of energy to get there.
I figured out my intolerances via elimination diet as i could not afford the testing at the time of diagnosis. this took me about 6 months or more, and there were lots of ups and downs with this process.
Prior to diagnosis i new that gluten, yeast and lactose were an issue and i had been having minimal amounts of those for over 10 years. It was eliminating all the hidden gluten, yeast that took a bit of time and the realising that Soy and Dairy were an issue and doing full elimination of them.
Regardless of what stage people are at, i highly recommend keeping a journal (we nicknamed it winning the pooh diary) of symptoms and reactions. what time you eat certain ingredients or what ingredients you eat at the same time can have relevance to reactions.
in my opinion, the best indicator of if something is good or not is listening to your body....
feel free to keep asking questions, generally at least one other person has had the same symptom or reaction, you are not on this journey alone
given the nature of the condition, this is the one place we can ask questions about gas, poop, etc and not feel self concious.
take care,
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Lisa
welcome, first of all, I am pretty new at all this too, I had terrible flare up and the dr put me on xifaxan first, to calm things down rather quickly, then I was able to start maintenace meds. Not sure if this could help you but its another option.
If you want to change the world, you must start at home.
Interestingly, I had been doing an elimination diet for almost a year before being diagnosed with CC, not only for my gut but for my skin rashes. I made a list of everything that bothered me in any way. Now that I know what my true diagnosis is, I've gone back to check my list, and find that I was right on for things a celiac or sufferer of MC shouldn't have. We know more than our doctors think we do. 
Pat C.
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
Not only that, but apparently we know more about treating this disease than doctors think they know.Pat wrote:We know more than our doctors think we do.
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.