Hi, I am newly diagnosed and new to this forum, which was a godsend to find. I have been trying to read as much on the forum as I can before asking questions and I have ordered the book, but I do have a few questions. My first episode lasted 3 months and the second/current one began 2 months later, probably because I got careless with my diet (not that the MD or dietician could offer real info about either--i just followed the typical D diet.) I am trying to put all this together. So during this episode I am following basically the exclusion diet, right? And when things stabilize (if I can really identify that point), I will try adding things back according to the instructions on this site. Any other advice?
How long do episodes usually last, and how frequently do they reoccur? I am taking 8 pepto bismol a day and one antihistamine at night---does that sound reasonable? The symptoms really got better with the PB and MUCH better with the antihistamine. I would like to avoid the medication unless diet and these OTC things fail. Suzanne
Newly diagnosed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Susanne,
Welcome to our internet family. Yes, if you are able to reach remission on your exclusion diet, then you should be in a position to test foods for suitability in your diet. The most efficient way to test foods is to try only 1 new food at a time, and eat it at least once a day for at least 3 days, in order to give it a good test. If it hasn't caused symptoms by then, you should be able to safely add it to your diet.
Please be aware that if you saw a big improvement after starting to take an antihistamine, then you may need to limit the total amount of high-histamine foods in your diet. It may not be necessary to avoid them altogether, but the odds are relatively high that if you get too much of them in your diet, they may trigger a reaction.
Regarding episodes, while spontaneous remission is always a possibility, it seems that only a lucky few members here ever experience such joyful events. For most of us, if we don't carefully maintain our treatment at all times (whether we control our symptoms by diet alone, medications, or a combination) we will usually relapse within a few weeks or so of letting our guard down. As long as we're careful to follow our treatment program, we are usually able to maintain remission indefinitely. That's assuming that we aren't hit with a massive amount of chronic stress. Stress is a wild card that can sometimes cancel remission despite our best efforts.
If you took a medication for your first episode, it may have been responsible for the "grace period" that followed. Also, for some of us, our initial episodes may be sporadic for a year or so, and then at some point they become chronic. For example, for over a year, I thought that I was either having relapses of the flu every month or so, or I was repeatedly suffering from food poisoning episodes. But then the events started recurring more frequently, and then one day the D started and wouldn't stop.
But rather than have constant D, my symptoms soon graduated to a pattern of alternating D and C.
Many of us here control our symptoms by diet alone. Many use a medication to mask their symptoms until the diet changes have time to allow the gut to heal, and then they slowly wean off the med and maintain remission by diet alone. We are all different, and we each develop our own custom-tailored treatment program (just as you are doing) in order to optimize our recovery.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Yes, if you are able to reach remission on your exclusion diet, then you should be in a position to test foods for suitability in your diet. The most efficient way to test foods is to try only 1 new food at a time, and eat it at least once a day for at least 3 days, in order to give it a good test. If it hasn't caused symptoms by then, you should be able to safely add it to your diet.
Please be aware that if you saw a big improvement after starting to take an antihistamine, then you may need to limit the total amount of high-histamine foods in your diet. It may not be necessary to avoid them altogether, but the odds are relatively high that if you get too much of them in your diet, they may trigger a reaction.
Regarding episodes, while spontaneous remission is always a possibility, it seems that only a lucky few members here ever experience such joyful events. For most of us, if we don't carefully maintain our treatment at all times (whether we control our symptoms by diet alone, medications, or a combination) we will usually relapse within a few weeks or so of letting our guard down. As long as we're careful to follow our treatment program, we are usually able to maintain remission indefinitely. That's assuming that we aren't hit with a massive amount of chronic stress. Stress is a wild card that can sometimes cancel remission despite our best efforts.
If you took a medication for your first episode, it may have been responsible for the "grace period" that followed. Also, for some of us, our initial episodes may be sporadic for a year or so, and then at some point they become chronic. For example, for over a year, I thought that I was either having relapses of the flu every month or so, or I was repeatedly suffering from food poisoning episodes. But then the events started recurring more frequently, and then one day the D started and wouldn't stop.
But rather than have constant D, my symptoms soon graduated to a pattern of alternating D and C.Many of us here control our symptoms by diet alone. Many use a medication to mask their symptoms until the diet changes have time to allow the gut to heal, and then they slowly wean off the med and maintain remission by diet alone. We are all different, and we each develop our own custom-tailored treatment program (just as you are doing) in order to optimize our recovery.
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.
Welcome Suzanne. It sounds like you have been proactive and that's always a good sign that you will heal.
As Tex said, we are all so different in what we can eat, how long a flare will last, and how much meds we news. But I can say that when you choose to test foods back in, don't ever put gluten back on that list. That one is a common thread for most of us and it's the hardest to rid the body of. Dairy is also a tough one for most of us, although some can do a bit of hard cheese.
I am one of those people who have histamine issues and take an Allegra in the am and a Benadryl in the PM. Seems to work great for me, but I probably could do better if I stayed COMPLETELY away from high histamine foods, but I choose not to and take the antihistamines. ( I would have a very hard time without vinegar, mustard, ketchup, mushrooms, and avocado. I love these foods and they make my diet doable.). We all have choices when it comes to how diligent we want to be and that is something you will get to once you are in a pretty good place.
Just remember that while you are in a flare , you want to stay away from fiber, raw fruits and veggies, beans and legumes, acid foods, and spicy foods… and maybe caffeine. THOSE are all things you can test back in later. Except for fruit, I have been able to add them all back in :)
Good luck and feel better soon
Leah
As Tex said, we are all so different in what we can eat, how long a flare will last, and how much meds we news. But I can say that when you choose to test foods back in, don't ever put gluten back on that list. That one is a common thread for most of us and it's the hardest to rid the body of. Dairy is also a tough one for most of us, although some can do a bit of hard cheese.
I am one of those people who have histamine issues and take an Allegra in the am and a Benadryl in the PM. Seems to work great for me, but I probably could do better if I stayed COMPLETELY away from high histamine foods, but I choose not to and take the antihistamines. ( I would have a very hard time without vinegar, mustard, ketchup, mushrooms, and avocado. I love these foods and they make my diet doable.). We all have choices when it comes to how diligent we want to be and that is something you will get to once you are in a pretty good place.
Just remember that while you are in a flare , you want to stay away from fiber, raw fruits and veggies, beans and legumes, acid foods, and spicy foods… and maybe caffeine. THOSE are all things you can test back in later. Except for fruit, I have been able to add them all back in :)
Good luck and feel better soon
Leah
newly diagnosed
Thank you both. I am sure you have heard this but can't help repeating: I felt like I was at sea--the MD was exquisitely vague ("don't eat too much fiber and take pepto bismol when you need it"), the dietician didn't know anything about this illness, all the standard web sites (Wed MD etc) had conflicting and minimal advice --I felt like I was on a strange planet. This site is like a port in the storm.
Best to you, Suzanne
Best to you, Suzanne
We consider ourselves sort of an internet family, because it seems that no one truly understands this disease unless they actually have it. And though we are all different, we all understand what everyone else has to deal with, because we all have to live with this disease. That empathy creates a strong bond. We are all kindred souls.
Thank you for the kind words, and I hope you have an enjoyable weekend.
Tex
Thank you for the kind words, and I hope you have an enjoyable weekend.
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.
HI Suzanne,
Just to add to what Leah and Tex said, when in a flare, not only did I have to avoid fiber and legumes, I did best if my diet was low fat, low or no sugar, caffeine free, and if I ate several very small meals. Avoid anything processed even if it says gluten free because there may still be additives that are suspect. Think: eat simply-- a lean roast with carrots or baked chicken with yellow squash or sweet potato. It's a repetitive diet but it will put you ahead.
Keep in mind that what you tolerate will be unique to you. I lived on chicken and rice but others here found through testing that they can't tolerate chicken and rice! If you can afford the Enterolab tests I would recommend them.
Carol
Just to add to what Leah and Tex said, when in a flare, not only did I have to avoid fiber and legumes, I did best if my diet was low fat, low or no sugar, caffeine free, and if I ate several very small meals. Avoid anything processed even if it says gluten free because there may still be additives that are suspect. Think: eat simply-- a lean roast with carrots or baked chicken with yellow squash or sweet potato. It's a repetitive diet but it will put you ahead.
Keep in mind that what you tolerate will be unique to you. I lived on chicken and rice but others here found through testing that they can't tolerate chicken and rice! If you can afford the Enterolab tests I would recommend them.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hello! GIs, for the most part, have no clue about safe foods. Mine continue to encourage me to eat cream of wheat and saltines when in a flare. I found what works best by following suggestions here on how to start out- from people who live it everyday. Sometimes it works for me and sometimes it doesn't but it's a great place to start. I've found upping my protein intake has done wonders. I ate almost no meat until a few years ago. It was a hard transition for me but I now focus on that first along with safe veggies. That was my first step in starting the healing process. It's not an easy lifestyle but worth it.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
All good advice!! I went strict gf/DF/sf right off the bat but couldn't or wouldn't cut down on the fruits or veggies enough until these folks kindly beat me over the head with it!! That helped and now 2.5 years later I can pretty much eat all the fruit and veggies I want.
HockeyMom
HockeyMom
"Do what you can, with what you have, where you are"-Teddy Roosevelt