Hello everyone! I've been an avid reader of this site since I found it a few months ago. What a relief to find a group of people who understand! And a wealth of information based on WHY we are sick and a rationale behind dietary and medicinal approaches to treatment. I only wish I'd found it decades ago. Its taken me a long time to contribute with my first post and I need advice on where to go from here!
A potted background, sorry even that's a bit lengthy.
I'm a 59 year old with a history of chronic WD.
1975- Diagnosed with IBS at 15, resolved completely on a high fibre diet, no white flour.
1989- Stressful job, long hours, unable to eat well and symptoms recurred. Also exposed to zoonotic pathogens on a daily basis.
1990 - 2000 Variable success with going back to the high fibre diet, no white flour, plain foods, but got worse gradually. Basically I lived with it but always felt the solution was dietary, I just hadn't found the right one yet. Drs were unhelpful e.g. try no coffee/tea, it's normal for you etc. Tried drugs (mesalasine, cholestyramine, loperamide etc) no better. So I soldiered on, tired all the time.
2000 - I had a colonoscopy eventually but no biopsies were taken - diagnosis normal colon, IBS. I deteriorated and was having loose BMs 5-10 times a day and struggling with a 90 hour week on occasion and lots of stress.
2005 - hurrah, of sorts, biopsies showed CC, a definitive diagnosis at least. I was told to take budesonide long term (with no dietary advice). I didn't like the sound of that even if most of it is metabolized first pass by the liver, and didn't take it. More self directed dietary trials followed, variable results.
2008 - On the verge of breakdown from the job, I packed it all in and moved to the coast. Improvements followed. I started the Paleo diet and daily BMs halved in frequency to 4 or 5 but still loose or WD.
2017 - I do lots of exercise and as I increased volume/intensity in training I needed more carbs (see Paleo Diet for Athletes by Loren Cordain) so added in small, infrequent amounts of homemade wholemeal spelt bread (yes I know grains aren't Paleo)- MISTAKE! I soon felt exhausted, nauseous, got skin rashes all over and hundreds of tiny blisters on my hands (dermatitis herpetiformis?), swollen knees, constant profuse WD and some days couldn't exercise at all. Figured out this might be gluten sensitivity, went GF and slowly improved.
2018 - Repeat colonoscopy confirmed CC, skin biopsy for DH (dermatitis herpetiformis) and celiac disease negative but I'd been off gluten for over 2 months by then. So budesonide was prescibed, no dietary advice ("you'll be able to eat whatever you like"). I asked what happens if I relapse as the 8 week course ends ("unlikely but a 2nd course'll do it"), what about a slower taper ("no, we never do that"), what if I don't respond ("everyone does"), how long after stopping will I be OK for ("probably for good"). Sounded too good to be true- 30 years of symptoms fixed in just 8 weeks with one drug. Deeply uneasy, I had to give it a go this time.
I did respond quite well (3-4 soft or loose BMs daily) until I tapered then was back to square one in 36 hours. So I went low FODMAP as well. Same after a longer course 2. I'd been on budesonide for 8 months by now. I started course 3. Response to each successive course was slower and less effective. What next?
I found your site two months ago, started a way more restrictive diet than ever before, GF/DF/SF/EF, basically bananas, Paleo bars (dates/few nuts), meat, fish, rice only. I supplement (carefully checking ingredients) with D3/ multi B vits/ Mg/ L glutamine/ turmeric/ Boswellia serrata at doses off your site. I managed to taper to 6mg/day with 1-2 soft BMs first thing then 3-4 WD later but only if/when I run (problems, problems). I didn't feel ready to try 3mg/day this time until I had normal BMs and was aiming to give the diet and 6mg/day much longer. Then last week Wham! Norovirus. I've lost 5kg in a week, BMI is 17, not just WD but fetid green pond water (sorry). I'm wiped out. That just about brings me up to date.
Here's my plan:
1. Stay GF/SF/DF and Paleo/low FODMAP but add in eggs and GF bread which I've tried before and seem OK on - some I'm not - until I feel better. I need to eat but can't face meat or fish yet.
2. Eat the nuts and other foods tested for in the Enterolab A1 and C1 panels.
3. Get Enterlab tests done after a few weeks, bearing in mind positives are probably true but negatives may be false after months of budesonide.
4. Continue supplements.
5. Restart stage 1 diet based on test results.
Apologies for dumping my life history on you all. I feel pretty stupid for neglecting myself so badly for so long. Thank you to anyone who replies.
Long time MC, newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
dottydog1959
- Posts: 12
- Joined: Fri Nov 09, 2018 7:50 am
- Location: North East
Hi,
Welcome to the forum. I have to admit, your case may not be the worst that we've seen, but it's in the running for one of the top positions. I can't see any major problems with your plan, except that you may need to emphasize meat more. It takes lots of protein to heal, and a high volume of nuts is not going to work because of the fiber content and possibly because of the histamine content. In fact, many of us find it very helpful to avoid nuts until after we have been in remission for a while. You may also have to stop supplements while you are recovering. If your vitamin D level tests less than 20 or 30, though, you may need to continue it and magnesium, but switch to topically-applied magnesium while recovering. For many of us, the immune system can be extremely sensitive while we are reacting. It can take very, very little aggravation for it to continue to react.
Adding eggs is a good idea because not only are they a good source of protein, but according to recently-published research, an egg a day will help to prevent diabetes (pretty much the opposite of what the food police have claimed for decades). But take note of the results for eggs on your EnteroLab test results (when you receive them). Sometimes the body can build up a tolerance for a protein even though that protein provokes an antibody response. For example, I have to avoid casein because my immune system produces antibodies against it, even though I can tolerate casein without any digestive symptoms.
After nearly 50 years of inflammation, you're obviously not going to be able to completely resolve all the problems overnight. The body is very adaptive, and over the decades your body has not exactly learned to live with the inflammation and diarrhea, but it's probably rather accustomed to it by now, so it will have to relearn how to operate without the inflammation and diarrhea.
All in all, your plan seems sound. Be aware that published research shows that budesonide becomes less effective with each stop/restart cycle. So if you are one of the few who has to remain on a small maintenance dose of budesonide indefinitely, it may be prudent to never completely stop taking it. Even 1 capsule every 3 or 4 days appears to maintain efficacy.
Best of luck to you on your recovery journey.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum. I have to admit, your case may not be the worst that we've seen, but it's in the running for one of the top positions. I can't see any major problems with your plan, except that you may need to emphasize meat more. It takes lots of protein to heal, and a high volume of nuts is not going to work because of the fiber content and possibly because of the histamine content. In fact, many of us find it very helpful to avoid nuts until after we have been in remission for a while. You may also have to stop supplements while you are recovering. If your vitamin D level tests less than 20 or 30, though, you may need to continue it and magnesium, but switch to topically-applied magnesium while recovering. For many of us, the immune system can be extremely sensitive while we are reacting. It can take very, very little aggravation for it to continue to react.
Adding eggs is a good idea because not only are they a good source of protein, but according to recently-published research, an egg a day will help to prevent diabetes (pretty much the opposite of what the food police have claimed for decades). But take note of the results for eggs on your EnteroLab test results (when you receive them). Sometimes the body can build up a tolerance for a protein even though that protein provokes an antibody response. For example, I have to avoid casein because my immune system produces antibodies against it, even though I can tolerate casein without any digestive symptoms.
After nearly 50 years of inflammation, you're obviously not going to be able to completely resolve all the problems overnight. The body is very adaptive, and over the decades your body has not exactly learned to live with the inflammation and diarrhea, but it's probably rather accustomed to it by now, so it will have to relearn how to operate without the inflammation and diarrhea.
All in all, your plan seems sound. Be aware that published research shows that budesonide becomes less effective with each stop/restart cycle. So if you are one of the few who has to remain on a small maintenance dose of budesonide indefinitely, it may be prudent to never completely stop taking it. Even 1 capsule every 3 or 4 days appears to maintain efficacy.
Best of luck to you on your recovery journey.
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.
-
dottydog1959
- Posts: 12
- Joined: Fri Nov 09, 2018 7:50 am
- Location: North East
Hi Tex
Thanks for the prompt reply. A dubious honour-one of the top positions!
I'm just avoiding meat and fish for a while until I've recovered from norovirus and only graze on nuts. I'll eat all of the enterolab tested foods before the test, with the exception of gluten. My D3 was 24 so I'll continue with that and topical Mg. I'll be very happy with any reduction in symptoms that I can manage to achieve.
Thanks for the prompt reply. A dubious honour-one of the top positions!
I'm just avoiding meat and fish for a while until I've recovered from norovirus and only graze on nuts. I'll eat all of the enterolab tested foods before the test, with the exception of gluten. My D3 was 24 so I'll continue with that and topical Mg. I'll be very happy with any reduction in symptoms that I can manage to achieve.
Welcome!
Go with the advice that Tex has given. I agree about the nuts and to keep all fibre low. The GF bread may need to wait awhile because of the additives. Your Enterolab results will be most helpful. For supplements, sticking with magnesium glycenate and vitamin D without the tumeric, etc., for now would be my advice.
Apparently, greener bananas are better for diarrhea than ripe ones.
Patience is truly a virtue with this disease. And that can be hard when all we want is to end the D and feel better.
Most of us do okay with cashew, almond or coconut milk. Same with cashew butter, almond butter unless our Enterolab results show otherwise.
Glad you are asking questions. You came to the right place.
Susan
Go with the advice that Tex has given. I agree about the nuts and to keep all fibre low. The GF bread may need to wait awhile because of the additives. Your Enterolab results will be most helpful. For supplements, sticking with magnesium glycenate and vitamin D without the tumeric, etc., for now would be my advice.
Apparently, greener bananas are better for diarrhea than ripe ones.
Patience is truly a virtue with this disease. And that can be hard when all we want is to end the D and feel better.
Most of us do okay with cashew, almond or coconut milk. Same with cashew butter, almond butter unless our Enterolab results show otherwise.
Glad you are asking questions. You came to the right place.
Susan
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome
why do you struggle with fish and meat?
many here do have issue with nuts, especially with the early stages of healing. with diet changes it can take at least 7 tastes to adjust to a new ingredient (the taste, the texture, the smell etc)
start low and slow, small serve blended with ingredients you like. (1/4 cup even) and increase gradually.
Animal protein is pretty important to healing for multiple reasons.
being reactive to virus is indicator of low nutrients such as zinc - animal protein is good source of zinc.
why do you struggle with fish and meat?
many here do have issue with nuts, especially with the early stages of healing. with diet changes it can take at least 7 tastes to adjust to a new ingredient (the taste, the texture, the smell etc)
start low and slow, small serve blended with ingredients you like. (1/4 cup even) and increase gradually.
Animal protein is pretty important to healing for multiple reasons.
being reactive to virus is indicator of low nutrients such as zinc - animal protein is good source of zinc.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Welcome,
Suggest reading JFR's first post in success stories (for inspiration). She suffered for decades and was able to go into remission.
https://perskyfarms.com/phpBB2/viewforum.php?f=71 She ate a lot of protein to get there.
Nuts are problematic for us until we are in remission due to the jagged edges. I don't do well with the GF nut/fruit
bars.
You are at the right place!
Suggest reading JFR's first post in success stories (for inspiration). She suffered for decades and was able to go into remission.
https://perskyfarms.com/phpBB2/viewforum.php?f=71 She ate a lot of protein to get there.
Nuts are problematic for us until we are in remission due to the jagged edges. I don't do well with the GF nut/fruit
bars.
You are at the right place!
-
dottydog1959
- Posts: 12
- Joined: Fri Nov 09, 2018 7:50 am
- Location: North East
Thanks for welcoming me in to your group and for the comments. I've given it all even more thought and have a couple of questions.
Firstly though, I've obviously given everyone the wrong impression that I'm substituting nuts for animal protein but I'm not. Just temporarily struggling with meat and fish while I'm still nauseous after norovirus. I've been Paleo for many years and am used to eating plenty of animal protein with little in the way of carbs and this won't change. Going Paleo has been the single most helpful diet change for my CC to date.
With regard to my plan for enterolab tests, is it worth testing when I've been on budesonide for 8 months or should I wait until after I'm well enough to wean off? I've since looked at the posts of members results and noticed that some tests are completely negative for those still on budesonide but repeat tests 6 months after stopping yield lots of positives. I wish I'd known to get tested before starting the budesonide - I asked my Dr for food sensitivity testing at the time but got nowhere. Do those of you who were tested whilst on budesonide think the results helped?
If I can't test then I need a sustainable elimination diet for a longish time while I try to get well and then slowly wean off budesonide. I'll ditch the GF bread, nuts, Paleo date and nut bars, eggs. Stick to lamb, turkey, game, white and oily fish, wild salmon. Carbs from sweet potatoes and rice. Low FODMAP veg, if any. Fruit unripe bananas only. Snack on rice cakes.
How does this sound as an amended diet plan? I feel that what I decide now is a big decision it's so important. And once decided, I'll stick to it unfailingly.
Thanks again to you all for helping.
Firstly though, I've obviously given everyone the wrong impression that I'm substituting nuts for animal protein but I'm not. Just temporarily struggling with meat and fish while I'm still nauseous after norovirus. I've been Paleo for many years and am used to eating plenty of animal protein with little in the way of carbs and this won't change. Going Paleo has been the single most helpful diet change for my CC to date.
With regard to my plan for enterolab tests, is it worth testing when I've been on budesonide for 8 months or should I wait until after I'm well enough to wean off? I've since looked at the posts of members results and noticed that some tests are completely negative for those still on budesonide but repeat tests 6 months after stopping yield lots of positives. I wish I'd known to get tested before starting the budesonide - I asked my Dr for food sensitivity testing at the time but got nowhere. Do those of you who were tested whilst on budesonide think the results helped?
If I can't test then I need a sustainable elimination diet for a longish time while I try to get well and then slowly wean off budesonide. I'll ditch the GF bread, nuts, Paleo date and nut bars, eggs. Stick to lamb, turkey, game, white and oily fish, wild salmon. Carbs from sweet potatoes and rice. Low FODMAP veg, if any. Fruit unripe bananas only. Snack on rice cakes.
How does this sound as an amended diet plan? I feel that what I decide now is a big decision it's so important. And once decided, I'll stick to it unfailingly.
Thanks again to you all for helping.
Hi,
Thanks for the clarification. I agree that the paleo diet, modified to fit one's own needs, is the best way to treat MC. Your plan sounds good. I agree that one's treatment plan is of paramount importance due to the fact that in most cases we have to follow our plan for a considerable length of time with almost blind faith in order to get results.
And I agree that there may be little point in spending your money on the EnteroLab tests after you've been on budesonide that long. Unless your normal Immunoglobulin A level is at the upper end of the normal range, you could well receive a lot of false negative results, and that would not only be frustrating, but very distracting.
I think you're well on your way.
Tex
Thanks for the clarification. I agree that the paleo diet, modified to fit one's own needs, is the best way to treat MC. Your plan sounds good. I agree that one's treatment plan is of paramount importance due to the fact that in most cases we have to follow our plan for a considerable length of time with almost blind faith in order to get results.
And I agree that there may be little point in spending your money on the EnteroLab tests after you've been on budesonide that long. Unless your normal Immunoglobulin A level is at the upper end of the normal range, you could well receive a lot of false negative results, and that would not only be frustrating, but very distracting.
I think you're well on your way.
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.
Your amended diet plan looks good.
I did not end up doing the enterolab testing until about 45 days after my last budesonide pill. It really wasn't by design. It was
kind of random.
While I was on budesonide I responded to it so really did not consider testing then and it wasn't until I got off of
budesonide and was kind of scared about what to eat that I did the enterolab. I did fine when I got off of budesonide
by following the guidance of the folks on this board until I ended up doing the enterolab.
I did not end up doing the enterolab testing until about 45 days after my last budesonide pill. It really wasn't by design. It was
kind of random.
While I was on budesonide I responded to it so really did not consider testing then and it wasn't until I got off of
budesonide and was kind of scared about what to eat that I did the enterolab. I did fine when I got off of budesonide
by following the guidance of the folks on this board until I ended up doing the enterolab.
If you contact the people at enterolab about testing they will tell you if its the proper time to test if you have been taking budesonide. Its a lot to spend if your results wont be accurate due to the steroid. They are very helpful as I had just started taking budesonide and I was able to do the testing.
-
jessica329
- Adélie Penguin
- Posts: 214
- Joined: Thu Oct 11, 2012 6:47 pm
- Location: CT
Are you keeping a food journal and noting how you feel throughout the day? Those types of bars would do me in. I also don't do well with nuts or nut milks. I tend to make chicken soup from scratch and find it really helps to settle things down. Anyways, my long winded point is that something you're eating might be riling things up.
As for the budesonide, worked well for me the 1st time around and not at all the 2nd time.
As for the budesonide, worked well for me the 1st time around and not at all the 2nd time.
Jessica
Lymphocytic colitis August 2012
Lymphocytic colitis August 2012
-
dottydog1959
- Posts: 12
- Joined: Fri Nov 09, 2018 7:50 am
- Location: North East
Hi Jessica
Yes I think you're right I'm still eating something which is causing inflammation. I've cut out the date/nut bars and all nuts. I don't do well with lamb, beef or chicken but turkey meat and turkey bone broth are good. White fish also seems ok.
I keep a food diary and note symptoms. Rather amusingly, I have just found an app for my phone called PoopLog (the clue is in the title!)which is excellent for giving an overview and identifying trends in conjunction with the food diary.
I've got a way to go before I get off budesonide but identifying all of my food triggers is a must.
Thanks for the advice.
Yes I think you're right I'm still eating something which is causing inflammation. I've cut out the date/nut bars and all nuts. I don't do well with lamb, beef or chicken but turkey meat and turkey bone broth are good. White fish also seems ok.
I keep a food diary and note symptoms. Rather amusingly, I have just found an app for my phone called PoopLog (the clue is in the title!)which is excellent for giving an overview and identifying trends in conjunction with the food diary.
I've got a way to go before I get off budesonide but identifying all of my food triggers is a must.
Thanks for the advice.
Dotty