Hi everyone!
This is going to be a really long post, so I apologize in advance. I'm so glad to have found a group specifically for people with microscopic colitis. It often feels like the least studied and understood type of IBD. I'm going to share my story because I'm in need of some extra support and guidance and would love to hear the input of anyone willing to share their thoughts or experiences.
My name is Theresa and I'm 36 years old. I was officially diagnosed with lymphocytic colitis about 12 years ago at the age of 24. Back then, after trying Asacol, Lomotil, and Pepto Bismol, I determined Pepto worked best for me. It did not put me into remission, but taking 6 to 9 tablets per day postponed my diarrhea and made it less watery. I took it this way for many years, but it became less effective in the last two years. Several years ago I also went on a gluten free diet for 1.5 years with no resolution of symptoms.
Fast forward to 2016 and I've recently started working with an integrative physician who recommended trying an elimination diet. I quit Pepto cold turkey and eliminated gluten, dairy, egg, soy, corn, alcohol, yeast, coffee, chocolate, tomatoes, citrus, added sugar, flavorings, coloring, and food additives. I stayed in this elimination phase for about 6 weeks and my symptoms got worse (probably from stopping Pepto). I then had to postpone the food challenge phase because I developed a perianal abscess and fistula which required surgery. I had a colonoscopy and endoscopy to see if anything new was going on, and they reconfirmed lymphocytic colitis in my right and left colon, and rectum, as well as moderate villous blunting in the small intestine with intraepithelial lymphocytosis consistent with celiac disease (Marsh 3b).
My conventional GI recommends a 3-month course of budesonide and considering my fistula is worried that my disease may "turn into a more chronic inflammatory disease such as Crohn's." I have always wanted to avoid stronger medication and a primary motivation for making all the recent dietary changes is that I was worried about inundating my body with Pepto for over a decade. It wasn't a long term solution. Since the elimination diet did not help me gain any symptom control after 8 weeks, my integrative physician then suggested trying the Specific Carbohydrate Diet. I've now been on a modified version of the SCD for a little over 2 weeks. This modified plan was created by my nutritionist and does not follow the same "intro diet" rules as Breaking the Vicious Cycle, but I did have a pretty minimal diet for the first week. Right now my diet does include egg, Green Valley lactose free yogurt, and I've had a small amount of hard cheese. I've seen on the forum that egg and dairy cause problems with many sufferers of MC. I don't notice a big difference in symptoms after any particular food on the diet except that I always have to rush to the bathroom after my first meal of the day. I'm keeping a detailed food journal.
I've also been on antibiotics for the abscess (metronidazole and ciprofloxacin) and wonder if they have actually helped my D. I've seen that they are sometimes used as treatment for colitis. During the two weeks of taking that combo, my D became formed but mushy, less urgent, and much less frequent. I was only going once or twice a day, and it was amazing. A thrombosing hemorrhoid that I had got better, and I think the fissure I had also had a chance to heal during this time. Anyway, it has been hard to tell if the SCD is helping because of the possible good effects from the antibiotics. When the course of metro and cipro ended, I had about one week where my stool stayed pretty formed but did start to get mushier as the days went on. Then the abscess seemed as though it was recurring and although I wanted to avoid more antibiotics, I'm now on a one-week course of Bactrim at the suggestion of my colorectal surgeon. Over the last two days, my D has become more mushy, unformed, and malodorous. I fear the frequency is on it's way to increasing as well.
Other changes I've made in the last two months: taking L-glutamine, a protein supplement called SarcoSelectDF from Moss Nutrition, taking Klaire Ther-biotic Complete and S. boulardii probiotics, stopped taking birth control. I also tried George's Aloe Vera liquid but have since read on the Breaking the Vicious Cycle site that it is not recommended because it can increase the tumor necrosis factor leading to IBD inflammation. I have no idea if any of these things are helping me because my symptoms haven't really changed aside from the weeks on antibiotics.
I'm so overwhelmed with my situation and just don't know what to do next. I'd like to continue the SCD and give it a chance, but I'm worried about the progression of my disease and don't want to put myself at risk for developing something more serious. Abscess, fistula, hemorrhoid, fissure, colitis, and celiac disease is enough for me and has really beaten me down. I know many people have it worse and I try to maintain hope, but it's hard, especially after making what I thought were positive changes. A loved one who works in holistic health thinks I am in a healing crisis and my body is reacting this way because of all the toxins and healing changes taking place.
If you've read this far, thanks for staying with me. I don't even know what questions to ask. I guess my options at this point are 1) to continue the SCD and see how my symptoms fare after stopping Bactrim, 2) go down to a very limited version of the SCD (or some other diet) which makes me nervous because I've lost weight and am currently only 94 lbs., 3) take budesonide to give my system a rest while continuing the SCD (or other diet), 4) another option is to work with my chiropractor who does designed clinical nutrition programs. She would keep me on a restricted diet and add whole food supplements to heal my gut as well as enzymes. Lastly, 5) go to medical school and figure out the cause of microscopic colitis myself.
I've heard so many positive stories of people with MC, Crohn's, and UC using diet to maintain remission and I want to believe it will work for me as well, but right now I can't discern the next best step through the fog of diets and therapies swirling around my brain. Thank you to anyone listening. It's comforting to know I'm not alone, but I wish none of us had to deal with this baffling disease. If given the chance to erase my experience with MC, I used to feel that I wouldn't change the past because it's made me who I am today. I still feel that way, but going forward I want and need to feel better. These last few months have been the hardest of my life.
Newbie to the forum, but not to MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome Teresita
wow - what a tough gig
do you want a hug from a new friend?
Many of the supplements and remedies that you tried - yes they can help things like Crohns but based on the experience of many members here, for some reason they dont help MC, especially when there is inflammation
I cant provide science as to why - when there is mega inflammation the best option is a bland, well cooked, small amount of ingredients eating plan.
Down the track - those types of supplements can help with long term healing process
-eating plans, no 'strict' eating plan seems to work for MC, each person has to work through individual ingredients to figure out what works best for them - many here do a modified Auto Immune Paleo type approach.
so far as working with a chiropractor - MC is not like other IBD's I have been proactive about various wholistic therapies and saw different practitioners before and after my MC diagnosis. MC was interesting to them as it did not 'react' like other IBD's and did not respond to treatments the same (i have seen naturopaths, acupuncturists, chiro/kinesiologists, biobalance practitioner)
in saying that, supporting the body, having treatments to reduce inflammation and balance the body is very beneficial. I am currently seeing chiro/kinesiologist and we are making good progress. my advice with this, have realistic expectations, we cant 'cure' MC, albeit we can come up with a management plan (diet, lifestyle, medication, supplements, treatments etc) that minimises symptoms and gives us our lives back...
have you read the posts aimed at new members? another good area is reading the posts in the success stories area, as this will give you an indicator of what others have done, how long it took etc.
what you will see is that what works for one, can cause chaos for another... we have basics that work for all but it can be trial and error to figure out your best plan.
at the time of doing the elimination diet (before you surgery) were you having high fibre items, salads, raw veges, nuts?
if so, this with stopping the pepto treatment is maybe why you didnt improve.
in the last 12 months - has your Vit D3 level been checked? do you supplement with Vit D3?
do some reading, use the search function to look up key words like medications etc and feel free to ask questions...
wow - what a tough gig
do you want a hug from a new friend?
Many of the supplements and remedies that you tried - yes they can help things like Crohns but based on the experience of many members here, for some reason they dont help MC, especially when there is inflammation
I cant provide science as to why - when there is mega inflammation the best option is a bland, well cooked, small amount of ingredients eating plan.
Down the track - those types of supplements can help with long term healing process
-eating plans, no 'strict' eating plan seems to work for MC, each person has to work through individual ingredients to figure out what works best for them - many here do a modified Auto Immune Paleo type approach.
so far as working with a chiropractor - MC is not like other IBD's I have been proactive about various wholistic therapies and saw different practitioners before and after my MC diagnosis. MC was interesting to them as it did not 'react' like other IBD's and did not respond to treatments the same (i have seen naturopaths, acupuncturists, chiro/kinesiologists, biobalance practitioner)
in saying that, supporting the body, having treatments to reduce inflammation and balance the body is very beneficial. I am currently seeing chiro/kinesiologist and we are making good progress. my advice with this, have realistic expectations, we cant 'cure' MC, albeit we can come up with a management plan (diet, lifestyle, medication, supplements, treatments etc) that minimises symptoms and gives us our lives back...
have you read the posts aimed at new members? another good area is reading the posts in the success stories area, as this will give you an indicator of what others have done, how long it took etc.
what you will see is that what works for one, can cause chaos for another... we have basics that work for all but it can be trial and error to figure out your best plan.
at the time of doing the elimination diet (before you surgery) were you having high fibre items, salads, raw veges, nuts?
if so, this with stopping the pepto treatment is maybe why you didnt improve.
in the last 12 months - has your Vit D3 level been checked? do you supplement with Vit D3?
do some reading, use the search function to look up key words like medications etc and feel free to ask questions...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Theresa,
Welcome to our Internet family. Not only does it seem as though MC is the least studied and most poorly understood IBD, but it actually is. Virtually every member of this discussion and support board who has been here long enough to have read a significant number of the posts here, and participated in the discussions for enough months or years, knows more about the disease and ways to effectively treat it than their gastroenterologist knows, at the moment.
To be honest, I'm kind of surprised that you haven't developed neurological symptoms as a result of so many years of possibly accumulating high levels of bismuth subsalicylate. Apparently your systems are working well to eliminate it.
I agree with what Gabes has posted. The GF diet is an essential part of treating MC, but unfortunately it's not sufficient in itself — all major food sensitivities have to be eliminated from the diet, including tiny trace amounts. That's why your 1.5-year GF diet was unsuccessful. The diet recommended by your integrative doctor looks good (as far as it goes), but I wonder if your doc cautioned you that you have to avoid all raw vegetables and fruit (except for possibly bananas) and minimize all sources of fiber. For example, white rice is OK, but brown rice is not, because it contains more fiber than most of us can handle during our recovery. Most fruit contains not only too much fiber, but also too much sugar in a form that is difficult for MC patients to digest (fructose). All vegetables must be thoroughly cooked (overcooked), until after we reach remission.
The problem with the SCD is that it ignores casein, and most of us are sensitive to casein. Yogurt and cheese (and all other dairy products) are loaded with casein). For years, on this discussion forum we have insisted that for most cases, probiotics should be avoided during the recovery phase of treatment because except for a negligible percentage of people, probiotics either have no benefits or they actually cause our symptoms to be much worse than they otherwise would be. The American Gastroenterological Association Institute has always recommended the use of probiotics in the treatment of MC (up until December, 2015).
But in mid-December, 2015 they published a new set of official guidelines for treating MC and they finally reversed their position on the use of probiotics. The new guidelines specifically recommend against the use of probiotics when treating symptomatic MC. You might want to point your doctors to the new guidelines.
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
It's not uncommon with MC to have to rush to the bathroom following a meal. But if this happens within 10 or 20 minutes of beginning a meal, your reactions might be triggered by mast cell issues. This isn't an issue for all of us, but it definitely is a problem for a surprising number of us, and physicians are generally totally unaware of this association with MC. To see if this might be an issue in your case, you can learn a few basics about the problem by reading the short articles at the links below:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
And yes, ciprofloxacin will bring temporary remission to virtually every MC patient who uses it. It's a shame that it has so many major black box warnings that preclude extensive use. Most other antibiotics tend to trigger an MC flare, though a few seem to be neutral.
As Gabes has pointed out, one of the problems with treatments by naturopaths and some integrative medicine docs is that they tend to treat MC patients as if they had Chron's disease or ulcerative colitis, and their treatments simply won't work for us. And an even bigger problem is created when they also tend to load patients up with supplements that will "promote healing". In a nutshell, this approach simply does not work for MC. In general, for the vast majority of cases, the simpler and blander our diet, and the fewer supplements we take, the faster we will recover. Far too many of the supplements recommended will trigger a reaction for some of us, so that if we take enough supplements we are virtually guaranteed to have a reaction and probably never reach remission. The only supplements that are important are vitamin D and magnesium, and in a few cases, methycobalamin (the active form of vitamin B-12). Everything else is best postponed until after stable remission is achieved.
This also applies to the "nutritional treatments" offered by chiropractors. When treating MC, less is more. The less junk we put into our bodies the more likely we are to recover. Back when I was still recovering, I made the dumb mistake of trying to add some expensive digestive enzymes to "speed up healing". About 12 hours after I tried the first capsule, my 10 hour vomitathon finally seemed to be over (thank goodness). But it was 4 more days before the burning pain in my guts subsided to the point that I was able to get up the nerve to try some solid food again. Of course not everyone has such a reaction to enzymes, but this old country boy will never touch any enzymes again, that's for sure.
There's a learning curve, because we have to learn how to treat ourselves, and we have to learn not to take the advice of professionals when it contradicts with the information that we have all learned the hard way on this forum, but it's certainly doable (read some of the posts in the Member Success Stores if you need inspiration). Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Not only does it seem as though MC is the least studied and most poorly understood IBD, but it actually is. Virtually every member of this discussion and support board who has been here long enough to have read a significant number of the posts here, and participated in the discussions for enough months or years, knows more about the disease and ways to effectively treat it than their gastroenterologist knows, at the moment.
To be honest, I'm kind of surprised that you haven't developed neurological symptoms as a result of so many years of possibly accumulating high levels of bismuth subsalicylate. Apparently your systems are working well to eliminate it.
I agree with what Gabes has posted. The GF diet is an essential part of treating MC, but unfortunately it's not sufficient in itself — all major food sensitivities have to be eliminated from the diet, including tiny trace amounts. That's why your 1.5-year GF diet was unsuccessful. The diet recommended by your integrative doctor looks good (as far as it goes), but I wonder if your doc cautioned you that you have to avoid all raw vegetables and fruit (except for possibly bananas) and minimize all sources of fiber. For example, white rice is OK, but brown rice is not, because it contains more fiber than most of us can handle during our recovery. Most fruit contains not only too much fiber, but also too much sugar in a form that is difficult for MC patients to digest (fructose). All vegetables must be thoroughly cooked (overcooked), until after we reach remission.
The problem with the SCD is that it ignores casein, and most of us are sensitive to casein. Yogurt and cheese (and all other dairy products) are loaded with casein). For years, on this discussion forum we have insisted that for most cases, probiotics should be avoided during the recovery phase of treatment because except for a negligible percentage of people, probiotics either have no benefits or they actually cause our symptoms to be much worse than they otherwise would be. The American Gastroenterological Association Institute has always recommended the use of probiotics in the treatment of MC (up until December, 2015).
But in mid-December, 2015 they published a new set of official guidelines for treating MC and they finally reversed their position on the use of probiotics. The new guidelines specifically recommend against the use of probiotics when treating symptomatic MC. You might want to point your doctors to the new guidelines.
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
It's not uncommon with MC to have to rush to the bathroom following a meal. But if this happens within 10 or 20 minutes of beginning a meal, your reactions might be triggered by mast cell issues. This isn't an issue for all of us, but it definitely is a problem for a surprising number of us, and physicians are generally totally unaware of this association with MC. To see if this might be an issue in your case, you can learn a few basics about the problem by reading the short articles at the links below:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
And yes, ciprofloxacin will bring temporary remission to virtually every MC patient who uses it. It's a shame that it has so many major black box warnings that preclude extensive use. Most other antibiotics tend to trigger an MC flare, though a few seem to be neutral.
As Gabes has pointed out, one of the problems with treatments by naturopaths and some integrative medicine docs is that they tend to treat MC patients as if they had Chron's disease or ulcerative colitis, and their treatments simply won't work for us. And an even bigger problem is created when they also tend to load patients up with supplements that will "promote healing". In a nutshell, this approach simply does not work for MC. In general, for the vast majority of cases, the simpler and blander our diet, and the fewer supplements we take, the faster we will recover. Far too many of the supplements recommended will trigger a reaction for some of us, so that if we take enough supplements we are virtually guaranteed to have a reaction and probably never reach remission. The only supplements that are important are vitamin D and magnesium, and in a few cases, methycobalamin (the active form of vitamin B-12). Everything else is best postponed until after stable remission is achieved.
This also applies to the "nutritional treatments" offered by chiropractors. When treating MC, less is more. The less junk we put into our bodies the more likely we are to recover. Back when I was still recovering, I made the dumb mistake of trying to add some expensive digestive enzymes to "speed up healing". About 12 hours after I tried the first capsule, my 10 hour vomitathon finally seemed to be over (thank goodness). But it was 4 more days before the burning pain in my guts subsided to the point that I was able to get up the nerve to try some solid food again. Of course not everyone has such a reaction to enzymes, but this old country boy will never touch any enzymes again, that's for sure.
There's a learning curve, because we have to learn how to treat ourselves, and we have to learn not to take the advice of professionals when it contradicts with the information that we have all learned the hard way on this forum, but it's certainly doable (read some of the posts in the Member Success Stores if you need inspiration). 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.
Your story makes me wish for every healing opportunity for you and soon!
There is so much to MC, and where to begin can feel so far out there...been there done that. Needless to say I began no where you are right now, but VitD3 and Elemental Magnesium and a bland diet is where I'd begin.
I started a post and albeit it is a tad bit long now, in the beginning there is lots of good encouraging advice, food, time ideas, emotions, just stuff http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173 maybe you can find a kernel of something in here too.
Keep asking things, it's how we function around here ;-)
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Welcome, Theresa! I think we all wish we could have "met" under better circumstances, but at least we're not alone in this!
I found myself identifying with parts of your story. I was diagnosed around the age of 30 after having symptoms for probably two years or so prior to that. I did a lot of troubleshooting on my own before seeing a GI doc and getting the diagnosis. My mom has celiac disease, so I tried going GF first. That didn't seem to help, so my primary care doc did some food sensitivity testing. After eliminating a handful of other items that came up on the test, I still wasn't seeing any movement on my symptoms. I also tried the SCD for a while (minus dairy, eggs and almonds b/c those items had come up on my food sensitivity testing). Once again, no real progress. It was so frustrating to read stories from people with severe IBDs who were seeing symptom improvement and healing when I wasn't!
Once I had a colonoscopy and endoscopy, the GI doc said he found MC and H. pylori (and a little gastritis), so he prescribed antibiotics for the H. pylori and told me to try Pepto for the MC. Fortunately, once I was through the 8 weeks of Pepto, my symptoms had finally improved quite a bit, and it's never been that bad again (about two years ago now). I'm still eating a pretty clean diet because I've learned a lot about gut health since then, but I honestly don't know what caused my symptom improvement. Seems like a weird thing to say, but I wish I had more obvious symptoms to food sensitivities (if I even have any?). When things were bad, no matter how many food diaries I kept, I couldn't pin my symptoms down to anything specific. Ever. That's unbelievably frustrating! Makes me wonder if it was more of a temporary leaky gut situation than actual food intolerances. Even now, if I get "glutened," I don't really notice any changes. Not that it happens often, or that I have any desire to consume gluten on a regular basis ...
All that said, I'm not sure I have a lot of actual advice. Just commiserating.
Kristen
I found myself identifying with parts of your story. I was diagnosed around the age of 30 after having symptoms for probably two years or so prior to that. I did a lot of troubleshooting on my own before seeing a GI doc and getting the diagnosis. My mom has celiac disease, so I tried going GF first. That didn't seem to help, so my primary care doc did some food sensitivity testing. After eliminating a handful of other items that came up on the test, I still wasn't seeing any movement on my symptoms. I also tried the SCD for a while (minus dairy, eggs and almonds b/c those items had come up on my food sensitivity testing). Once again, no real progress. It was so frustrating to read stories from people with severe IBDs who were seeing symptom improvement and healing when I wasn't!
Once I had a colonoscopy and endoscopy, the GI doc said he found MC and H. pylori (and a little gastritis), so he prescribed antibiotics for the H. pylori and told me to try Pepto for the MC. Fortunately, once I was through the 8 weeks of Pepto, my symptoms had finally improved quite a bit, and it's never been that bad again (about two years ago now). I'm still eating a pretty clean diet because I've learned a lot about gut health since then, but I honestly don't know what caused my symptom improvement. Seems like a weird thing to say, but I wish I had more obvious symptoms to food sensitivities (if I even have any?). When things were bad, no matter how many food diaries I kept, I couldn't pin my symptoms down to anything specific. Ever. That's unbelievably frustrating! Makes me wonder if it was more of a temporary leaky gut situation than actual food intolerances. Even now, if I get "glutened," I don't really notice any changes. Not that it happens often, or that I have any desire to consume gluten on a regular basis ...
All that said, I'm not sure I have a lot of actual advice. Just commiserating.
Kristen
Hi Theresa
I too could identify with parts of your story. It can get so confusing. Everyone has an opinion and in some instances they contradict each other. You go along with what your practitioner says and when it doesn't work you feel like an oddity because your practitioner says it works for everyone else.
I think it is great to learn from others and it is so encouraging to read the success stories. Some of my doctors and naturopaths have been more helpful than others but I learned something from each of them. And this site has been great because I am connecting with people who know exactly what I am going through.
Tex, I found what you said about digestive enzymes interesting. My integrative doctor on my first visit told me to take Betaine Hydrochloride Acid/Pepsin/Gentian Bitters. I just felt a burning all the time and it made the D worse. I felt like I was the only one who couldn't tolerate this supplement.
Theresa, I am on Budesonide. It hasn't solved all my issues but it has definitely made things easier.
Welcome to the family
I too could identify with parts of your story. It can get so confusing. Everyone has an opinion and in some instances they contradict each other. You go along with what your practitioner says and when it doesn't work you feel like an oddity because your practitioner says it works for everyone else.
I think it is great to learn from others and it is so encouraging to read the success stories. Some of my doctors and naturopaths have been more helpful than others but I learned something from each of them. And this site has been great because I am connecting with people who know exactly what I am going through.
Tex, I found what you said about digestive enzymes interesting. My integrative doctor on my first visit told me to take Betaine Hydrochloride Acid/Pepsin/Gentian Bitters. I just felt a burning all the time and it made the D worse. I felt like I was the only one who couldn't tolerate this supplement.
Theresa, I am on Budesonide. It hasn't solved all my issues but it has definitely made things easier.
Welcome to the family
‘I have decided to stick with love. Hate is too great a burden to bear.’ – Martin Luther King Jr
Hi Theresa,
Sorry to see another person join the MC club! I say that jokingly, and as you mention have been dealing with this terrible disease for years. Good luck finding answers that help improve your condition. The sight can be helpful with tips and ideas to try.
I guess for me I'm experiencing some success of late with further improving my stomach by not only avoiding trigger foods, but also avoiding animals that had been fed trigger foods. For example if soy, synthetic vitamins or alfalfa was fed to an animal the allergens to those items could show up in the dairy, egg, meat, etc. At least that is my theory and is working for me for me.
Since it hasn't been pointed out you might take at look at low dose naltrexone (LDN). Some but not all have found it helpful with few side effects. You can read a thread on it here. Best to luck!
"An update on my LDN therapy: A Miracle? An unequivocal YES!"
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20020
Sorry to see another person join the MC club! I say that jokingly, and as you mention have been dealing with this terrible disease for years. Good luck finding answers that help improve your condition. The sight can be helpful with tips and ideas to try.
I guess for me I'm experiencing some success of late with further improving my stomach by not only avoiding trigger foods, but also avoiding animals that had been fed trigger foods. For example if soy, synthetic vitamins or alfalfa was fed to an animal the allergens to those items could show up in the dairy, egg, meat, etc. At least that is my theory and is working for me for me.
Since it hasn't been pointed out you might take at look at low dose naltrexone (LDN). Some but not all have found it helpful with few side effects. You can read a thread on it here. Best to luck!
"An update on my LDN therapy: A Miracle? An unequivocal YES!"
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20020
Wow, thank you all so much for the thoughtful responses and support. It really means so much at a time when everything is overwhelming. I'm sure you know what I mean! After reading lots of posts and the detailed, caring responses you provide, I can tell you that you're doing an amazing service for people affected by MC.
Gabes, yes please! Hugs and new friends are exactly what I need. Thanks for letting me know that MC doesn't respond the same as other IBDs. After not responding to the particular elimination diet I did, and now the SCD, I believe it for sure. I think deep down I know that the next step is to try the bland and simple diet that both you and Tex talk about. Whether or not I decide to take budesonide, it sounds like that is the best way forward based on so many of the experiences on the forum.
I didn't consume any raw veggies during the elimination diet, and rarely raw nuts, but I did consume nut butters liberally as well as veggies and legumes that I'm sure are high in fiber. Also lots of brown rice and brown rice based things - like wraps, bread, and rice cakes.
About a year ago, my vitamin D was very low and I took high dose D3 at the time. My level then actually went a little too high, so I stopped and didn't go on a maintenance dose because I ended up moving and leaving that doctor. Recently, my integrative physician checked my parathyroid hormone level (PTH) and said this was an indicator of vitamin D as well. My level was in the normal range and he wasn't worried about it. I didn't understand why he wouldn't just test for vitamin D directly, but I don't know much about PTH. I wouldn't be surprised if my level is low though, considering I don't get much sun these days, and am not ingesting anything that is fortified with D.
It's good to hear that you are finding success with some holistic therapies, Gabes. I had a feeling that taking loads of supplements and enzymes would not be good for me right now, so I will probably hold off on working with the chiropractor I was talking about. I think she may be a good support in the future though. We have a good relationship and she really listens.
A few questions for the group on the healing diet front...
1. Does anyone recommend a very base diet to start from? My elimination diet was restrictive but I didn't limit my vegetables, fruits, proteins, oils, brown rice, and nut butters. I didn't eat raw nuts very often and tried not to overdo it on beans. However, I also had mass produced items like soy-free Earth Balance spread (made from vegetable oils), yeast-free brown rice bread from Food for Life, homemade baked goods made from nut-based and gluten-free flours (but not grain-free), and Coconut Bliss "ice cream." I'm guessing that even though these things had ingredients that were "safe" for a normal person, it was too much for my body to handle in its current condition. So, I just don't know where to start with the base diet because my symptoms have remained pretty much the same regardless of what I take out or add back in. Is there a list of things that most people respond well to in the beginning?
2. My weight is a serious issue for me right now. I'm 5'5" and weigh 93 pounds. Not healthy! So, I'm worried about going on a super simple diet and not being able to maintain or gain weight. Right now I'm taking a protein powder supplement from a reputable company, but it has lots of vitamins, minerals, and some inactive ingredients that I question. Does anyone else take a protein supplement and if so, what type? My nutritionist recommended a simple, no other ingredients, pea protein that I can try instead. Not sure if that's safe to do while healing though. Another suggestion of hers was to add oil to all my meals (coconut, olive, avocado, etc.) but I'm not sure that's safe in the beginning either. Maybe I can stick with just one throughout and if I don't notice improvements, try another? Lastly, she recommended eating the starchier vegetables allowed on SCD to help me gain weight, like acorn and butternut squash, parsnips, turnip, etc. I'm sure the fiber in these is counterproductive, but I need to gain weight.
3. Would you recommend to totally cut out fruit altogether, or are there one or two that are ok to keep in? Tex said bananas might be ok. Any others?
4. What about spices? Should I just limit myself to salt and pepper or are there others that might be ok?
5. Tex, you mention that white rice is ok for a lot of people? That would be a great thing to add back in, since I have really missed having a grain while on the SCD. I'm all freaked out about grains now because the SCD says my gut can't digest complex carbohydrates, but I'm not doing any better without it. I was actually eating brown rice before, but it sounds like white might be better because there is less fiber.
I know all the answers to these questions are totally based on each individual's response, but I'm just not sure where to start.
-----
Hi Tex, thank you for welcoming me to the community with open arms and responding so thoroughly. I feel like you all read my entire post, whereas when I write or talk to a doctor, they only hear half of what I'm saying.
I'm surprised about not experiencing any neurological symptoms on the Pepto as well. I tried to only take what I needed to function, so maybe that's why. The only side effect I may have experienced was tinnitus, but I'm not 100% sure that was caused by the bismuth. Even though my digestive symptoms got worse, I'm sure my body is happier with the change.
I'm really glad you mentioned the issue of mast cells. I read the information and some additional stuff on the web and I definitely have some of the symptoms - diarrhea, gas, acid reflux, unexplained headaches that aren't severe but can last for days, anxiety, and runny nose on occasion. I also have had these itchy hives that appear on my face, just one at a time, that I've never been able to explain. Sometimes I have just eaten, but other times they appear just after I wake up, and haven't eaten anything or put anything on my face.
Do you recommend tackling a possible mast cell issue right away, or working on diet first? What is the best way to test your histamine tolerance - taking an anti-histamine or simply staying away from high histamine foods?
The probiotics issue is really interesting to hear. I had no idea. I've been taking them religiously right now because I'm on antibiotics. I'm thinking I should keep that up for a little while after the antibiotics are done, but then I will talk to my integrative guy about the AGA guideline.
My magnesium was indeed low when it was checked last. I will work on supplementing for that and see if I can get my vitamin D checked again. The magnesium tablets I happen to have in the house is elemental magnesium from chelated magnesium aspartate. Is that the right stuff? I've seen other posts about people doing a topical magnesium. I have a feeling I need calcium as well. Would that be a bad thing to add right now? The MRI done to diagnose my abscess also found degeneration in my pelvic bones. I haven't been to see a specialist about that finding yet. I'm assuming some degeneration is normal as we age, but it may also mean that I'm losing more bone than I should. I know I'm not getting enough calcium. Lastly, a previous physician had me on B-12. I'll check into my B-12 level as well.
That is scary to hear about your experience with digestive enzymes. I'm so sorry you had to go through that!
There is a huge learning curve and although I've had the disease for years, I feel like I am starting from square one. Everything I've done so far at least tells me what doesn't work. And that's a good thing too. Anyway, I feel a little better about climbing this mountain now that I've found you all.
-----
Dear Erica, thank you so much! I read quite a few pages of your post and I feel so much of what you were feeling in the beginning. It's encouraging to know that you were in my position almost exactly one year ago, and now you're doing so much better. Thank you for sharing the post and being so open about what you were feeling at the time. You are awesome, and I look forward to hearing how you improve in the months to come.
-----
Hi Kristen, I'm glad you shared your story. Commiseration is therapy too! Our stories do sound really similar in a lot of ways. It is extremely frustrating to try these diets and not notice any response at all. If I didn't have MC, I would be the healthiest person on the planet right now with the diet I'm on. I've also had allergy testing and muscle testing that haven't shown allergies. Did you do one of the Enterolab food sensitivity tests? I'm wondering if I should do that. Do you know which one is best to start with if I do?
Anyway, I'm so glad Pepto (or whatever it was!) worked for you and that you are feeling good now. Every story is different and it's encouraging to hear that sometimes something just clicks into place.
-----
Adelaide, first of all, I love your name. :) Second, what you said about learning something from each of your practitioners struck a chord with me. Sometimes I feel discouraged that this doctor or that doctor hasn't helped or I haven't improved based on their advice, but I do always come away with knowledge I didn't have before. Right now I think working with a conventional GI, a colorectal surgeon for the acute stuff, an integrative physician, and a nutritionist, is probably a good army of support. And now I have all of you backing me as well.
I'm very glad to hear budesonide is helping you. I'm still on the fence about it, but I get a little closer to accepting it as an option every day because of how bad things have become.
-----
Hi Blueberry, thank you for the warm welcome! That is interesting what you say about the animal feed. So glad it is helping you. How do you find out what the animals have been fed? Do you get your meat through a local farm? Thank you for the info on naltrexone too. I'll read more about it.
-----
Another huge and warm thank you to all for your thoughts. I'm so grateful and hope I can help others on the forum as I get further into my journey.
Theresa
Gabes, yes please! Hugs and new friends are exactly what I need. Thanks for letting me know that MC doesn't respond the same as other IBDs. After not responding to the particular elimination diet I did, and now the SCD, I believe it for sure. I think deep down I know that the next step is to try the bland and simple diet that both you and Tex talk about. Whether or not I decide to take budesonide, it sounds like that is the best way forward based on so many of the experiences on the forum.
I didn't consume any raw veggies during the elimination diet, and rarely raw nuts, but I did consume nut butters liberally as well as veggies and legumes that I'm sure are high in fiber. Also lots of brown rice and brown rice based things - like wraps, bread, and rice cakes.
About a year ago, my vitamin D was very low and I took high dose D3 at the time. My level then actually went a little too high, so I stopped and didn't go on a maintenance dose because I ended up moving and leaving that doctor. Recently, my integrative physician checked my parathyroid hormone level (PTH) and said this was an indicator of vitamin D as well. My level was in the normal range and he wasn't worried about it. I didn't understand why he wouldn't just test for vitamin D directly, but I don't know much about PTH. I wouldn't be surprised if my level is low though, considering I don't get much sun these days, and am not ingesting anything that is fortified with D.
It's good to hear that you are finding success with some holistic therapies, Gabes. I had a feeling that taking loads of supplements and enzymes would not be good for me right now, so I will probably hold off on working with the chiropractor I was talking about. I think she may be a good support in the future though. We have a good relationship and she really listens.
A few questions for the group on the healing diet front...
1. Does anyone recommend a very base diet to start from? My elimination diet was restrictive but I didn't limit my vegetables, fruits, proteins, oils, brown rice, and nut butters. I didn't eat raw nuts very often and tried not to overdo it on beans. However, I also had mass produced items like soy-free Earth Balance spread (made from vegetable oils), yeast-free brown rice bread from Food for Life, homemade baked goods made from nut-based and gluten-free flours (but not grain-free), and Coconut Bliss "ice cream." I'm guessing that even though these things had ingredients that were "safe" for a normal person, it was too much for my body to handle in its current condition. So, I just don't know where to start with the base diet because my symptoms have remained pretty much the same regardless of what I take out or add back in. Is there a list of things that most people respond well to in the beginning?
2. My weight is a serious issue for me right now. I'm 5'5" and weigh 93 pounds. Not healthy! So, I'm worried about going on a super simple diet and not being able to maintain or gain weight. Right now I'm taking a protein powder supplement from a reputable company, but it has lots of vitamins, minerals, and some inactive ingredients that I question. Does anyone else take a protein supplement and if so, what type? My nutritionist recommended a simple, no other ingredients, pea protein that I can try instead. Not sure if that's safe to do while healing though. Another suggestion of hers was to add oil to all my meals (coconut, olive, avocado, etc.) but I'm not sure that's safe in the beginning either. Maybe I can stick with just one throughout and if I don't notice improvements, try another? Lastly, she recommended eating the starchier vegetables allowed on SCD to help me gain weight, like acorn and butternut squash, parsnips, turnip, etc. I'm sure the fiber in these is counterproductive, but I need to gain weight.
3. Would you recommend to totally cut out fruit altogether, or are there one or two that are ok to keep in? Tex said bananas might be ok. Any others?
4. What about spices? Should I just limit myself to salt and pepper or are there others that might be ok?
5. Tex, you mention that white rice is ok for a lot of people? That would be a great thing to add back in, since I have really missed having a grain while on the SCD. I'm all freaked out about grains now because the SCD says my gut can't digest complex carbohydrates, but I'm not doing any better without it. I was actually eating brown rice before, but it sounds like white might be better because there is less fiber.
I know all the answers to these questions are totally based on each individual's response, but I'm just not sure where to start.
-----
Hi Tex, thank you for welcoming me to the community with open arms and responding so thoroughly. I feel like you all read my entire post, whereas when I write or talk to a doctor, they only hear half of what I'm saying.
I'm surprised about not experiencing any neurological symptoms on the Pepto as well. I tried to only take what I needed to function, so maybe that's why. The only side effect I may have experienced was tinnitus, but I'm not 100% sure that was caused by the bismuth. Even though my digestive symptoms got worse, I'm sure my body is happier with the change.
I'm really glad you mentioned the issue of mast cells. I read the information and some additional stuff on the web and I definitely have some of the symptoms - diarrhea, gas, acid reflux, unexplained headaches that aren't severe but can last for days, anxiety, and runny nose on occasion. I also have had these itchy hives that appear on my face, just one at a time, that I've never been able to explain. Sometimes I have just eaten, but other times they appear just after I wake up, and haven't eaten anything or put anything on my face.
Do you recommend tackling a possible mast cell issue right away, or working on diet first? What is the best way to test your histamine tolerance - taking an anti-histamine or simply staying away from high histamine foods?
The probiotics issue is really interesting to hear. I had no idea. I've been taking them religiously right now because I'm on antibiotics. I'm thinking I should keep that up for a little while after the antibiotics are done, but then I will talk to my integrative guy about the AGA guideline.
My magnesium was indeed low when it was checked last. I will work on supplementing for that and see if I can get my vitamin D checked again. The magnesium tablets I happen to have in the house is elemental magnesium from chelated magnesium aspartate. Is that the right stuff? I've seen other posts about people doing a topical magnesium. I have a feeling I need calcium as well. Would that be a bad thing to add right now? The MRI done to diagnose my abscess also found degeneration in my pelvic bones. I haven't been to see a specialist about that finding yet. I'm assuming some degeneration is normal as we age, but it may also mean that I'm losing more bone than I should. I know I'm not getting enough calcium. Lastly, a previous physician had me on B-12. I'll check into my B-12 level as well.
That is scary to hear about your experience with digestive enzymes. I'm so sorry you had to go through that!
There is a huge learning curve and although I've had the disease for years, I feel like I am starting from square one. Everything I've done so far at least tells me what doesn't work. And that's a good thing too. Anyway, I feel a little better about climbing this mountain now that I've found you all.
-----
Dear Erica, thank you so much! I read quite a few pages of your post and I feel so much of what you were feeling in the beginning. It's encouraging to know that you were in my position almost exactly one year ago, and now you're doing so much better. Thank you for sharing the post and being so open about what you were feeling at the time. You are awesome, and I look forward to hearing how you improve in the months to come.
-----
Hi Kristen, I'm glad you shared your story. Commiseration is therapy too! Our stories do sound really similar in a lot of ways. It is extremely frustrating to try these diets and not notice any response at all. If I didn't have MC, I would be the healthiest person on the planet right now with the diet I'm on. I've also had allergy testing and muscle testing that haven't shown allergies. Did you do one of the Enterolab food sensitivity tests? I'm wondering if I should do that. Do you know which one is best to start with if I do?
Anyway, I'm so glad Pepto (or whatever it was!) worked for you and that you are feeling good now. Every story is different and it's encouraging to hear that sometimes something just clicks into place.
-----
Adelaide, first of all, I love your name. :) Second, what you said about learning something from each of your practitioners struck a chord with me. Sometimes I feel discouraged that this doctor or that doctor hasn't helped or I haven't improved based on their advice, but I do always come away with knowledge I didn't have before. Right now I think working with a conventional GI, a colorectal surgeon for the acute stuff, an integrative physician, and a nutritionist, is probably a good army of support. And now I have all of you backing me as well.
I'm very glad to hear budesonide is helping you. I'm still on the fence about it, but I get a little closer to accepting it as an option every day because of how bad things have become.
-----
Hi Blueberry, thank you for the warm welcome! That is interesting what you say about the animal feed. So glad it is helping you. How do you find out what the animals have been fed? Do you get your meat through a local farm? Thank you for the info on naltrexone too. I'll read more about it.
-----
Another huge and warm thank you to all for your thoughts. I'm so grateful and hope I can help others on the forum as I get further into my journey.
Theresa
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
A good starting point is meat and veges, home cooked, well cooked,1. Does anyone recommend a very base diet to start from? My elimination diet was restrictive but I didn't limit my vegetables, fruits, proteins, oils, brown rice, and nut butters. I didn't eat raw nuts very often and tried not to overdo it on beans. However, I also had mass produced items like soy-free Earth Balance spread (made from vegetable oils), yeast-free brown rice bread from Food for Life, homemade baked goods made from nut-based and gluten-free flours (but not grain-free), and Coconut Bliss "ice cream." I'm guessing that even though these things had ingredients that were "safe" for a normal person, it was too much for my body to handle in its current condition. So, I just don't know where to start with the base diet because my symptoms have remained pretty much the same regardless of what I take out or add back in. Is there a list of things that most people respond well to in the beginning?
whether it be stews, soups, roasted meats with roasted vegetables, using a slow cooker,
avoid the main triggers, gluten, dairy, soy, eggs, minimise intake of processed items (even the gluten, soy free ones) - cereals, pasta, breads, biscuits.
there are some meal ideas in erica's post that you have been reading, and various meal ideas in other areas of the forum
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
starting with white rice, 1-2 vegetables, and the proteins that settle best.
weight gain will not happen while there is mega inflammation, hence why we strongly recommend the bland well cooked eating plan, get the inflammation levels down so your digestion can start to function 'normally' once you have your safe eating plan, weight gain will happen.2. My weight is a serious issue for me right now. I'm 5'5" and weigh 93 pounds. Not healthy! So, I'm worried about going on a super simple diet and not being able to maintain or gain weight. Right now I'm taking a protein powder supplement from a reputable company, but it has lots of vitamins, minerals, and some inactive ingredients that I question. Does anyone else take a protein supplement and if so, what type? My nutritionist recommended a simple, no other ingredients, pea protein that I can try instead. Not sure if that's safe to do while healing though. Another suggestion of hers was to add oil to all my meals (coconut, olive, avocado, etc.) but I'm not sure that's safe in the beginning either. Maybe I can stick with just one throughout and if I don't notice improvements, try another? Lastly, she recommended eating the starchier vegetables allowed on SCD to help me gain weight, like acorn and butternut squash, parsnips, turnip, etc. I'm sure the fiber in these is counterproductive, but I need to gain weight.
I would be cautious of pea protein, as it is in the same family as soy, you may react.
small amount of banana each day is the safest option.3. Would you recommend to totally cut out fruit altogether, or are there one or two that are ok to keep in? Tex said bananas might be ok. Any others?
the reason we suggest no fruit is for two reasons - a) to avoid the fibre and b) avoid the fruit sugar. Sugar is harmful to good digestion.
with the banana's ensure they are not too over-ripe
in the early days while there is high levels of inflammation I encourage salt and pepper only.4. What about spices? Should I just limit myself to salt and pepper or are there others that might be ok?
spices and herbs can be inflammatory. down the track you can test them and see if they do ok.
One really good basis for the eating plan, to make soups and stews is home made bone broth. this contains loads of good natural gut healing ingredients in a form our body can absorb really well ( gelatin, collagen, minerals, amino acids) in most cases it is cheaper than supplements. the animal fat and good serves of protein are essential to healing.
I boil my veges in bone broth, cook rice in it, make lots of stews and soups.
I freeze precooked stews in meal portions in the freezer so I have spare meals on hand.
it can all be a bit overwhelming at first, but if you figure it out a meal at a time, a week at a time first figure out some options for lunch, then options for breakfast, then work on options for dinner, then options for snacks. what suits your lifestyle, routine, budget..
a good motto for Mc world is 'Progress not perfection' you are embracing some big changes so take it a change at a time... do the mental and emotional work of things as you do the eating plan changes.
each weekend i do a bit of a cook up so I have my breakfasts and lunches mostly sorted for the week ahead.
for now a good maintenance dose of Vit D3 would be good. without getting into the complexities, what doctors say is 'normal' can be a bit low for those with IBD's and inflammation.
For now the main priority is coming up with a safe eating plan. Once you know your safe ingredients, it becomes the foundation of your eating for life.
hope this helps..
take care
healing hugs
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Theresa wrote:Recently, my integrative physician checked my parathyroid hormone level (PTH) and said this was an indicator of vitamin D as well. My level was in the normal range and he wasn't worried about it. I didn't understand why he wouldn't just test for vitamin D directly, but I don't know much about PTH. I wouldn't be surprised if my level is low though, considering I don't get much sun these days, and am not ingesting anything that is fortified with D.
Without supplementation, vitamin D levels of IBD patients can decline surprisingly fast sometimes. Some doctors just don't like to order vitamin D tests, though I have no idea why. His use of PTH test results to verify an adequate vitamin D level is dubious at best and downright deceiving at worst. Yes, if you were extremely low on vitamin D then your serum calcium level might be high or near the upper limit of the normal range, and (if your parathyroid glands are functioning correctly) your PTH result should be low (or in the lower part of the normal range). But as long as you are not completely out of magnesium then the odds are good that those numbers would still be in the normal range despite a vitamin D deficiency. It's always important for IBD patients to check their vitamin D levels regularly, because IBDs deplete vitamin D and so do the drugs used to treat IBDs.
Regarding diet suggestions, I see that Gabes has done a good job of answering your questions while I was still writing, so you can disregard most of what I have posted here and just use her suggestions to get started selecting a diet.
The simpler the diet, the better it usually works, with as few processed foods and seasonings as possible. Salt and pepper is OK. Variety may be the spice of life, but it also tends to be the downfall of many MC recovery diets. Peeled, overcooked squash are usually well-tolerated by virtually everyone, and so are sweet potatoes and cauliflower. If you happen to be sensitive to soy, then you will also be sensitive to most legumes (including beans, peas, peanuts, etc.). Coconut oil is safer than olive oil, but most of us can tolerate pure olive oil. If you choose to use olive oil, use only California olive oil brands, because too much of the imported olive oil is adulterated with soy oil and various other oils.
Avocado should be safe, and it contains a lot of fat. But eating fat won't make you fat. Eating grains will, so white rice should help to keep your weight up if you can tolerate rice. If you're going to eat rice, definitely choose white rice. Vegetables are OK, but I doubt that you would gain weight if you ate a truck load of squash and carrots or other vegetables each day. Watch that you don't overdo the fiber.
Until your digestive system is functioning (digesting food) better, your nutrient absorption will be poor anyway, so the goal is to stop the inflammation and allow the gut to heal so that it can begin to utilize the nutrients in your food again. Once your digestive system is working better then weight gain will come naturally and automatically (provided that you take in enough calories each day). A lot of people wonder why they can't gain weight, but they're only taking in 2,000 or so calories per day. No one can gain weight on a starvation diet unless they are hypothyroid or have some other metabolism problem.
Baked products are risky because GF flours are sometimes cross-contaminated during the milling process. Most of us recover much more reliably if we avoid or at least minimize products that use blends of GF flours. The more ingredients a processed food contains, the higher the risk that we will react to it.
Osteoporosis is a side effect of untreated gluten sensitivity. It's easy to get plenty of calcium in one's diet. And Almond Milk contains at least as much calcium as cow's milk. The key to healthy bones lies in making sure that we don't run short of either magnesium or vitamin D. Without them, calcium in our diet cannot be utilized to keep bones healthy and it can even build up to cause calcification problems in blood vessels and various organs (if we are deficient in either magnesium or vitamin D). Topically-applied magnesium is much safer than oral magnesium, but if you use oral magnesium supplements, chelated magnesium (magnesium glycinate) is the safest form.
Yes, it's still a good idea to take a probiotic for a couple of weeks following certain antibiotic treatments. That can sometimes help to prevent pathogenic bacteria from getting out of hand before non-pathogenic bacteria have time to become reestablished.Theresa wrote:The probiotics issue is really interesting to hear. I had no idea. I've been taking them religiously right now because I'm on antibiotics. I'm thinking I should keep that up for a little while after the antibiotics are done, but then I will talk to my integrative guy about the AGA guideline.
I hope that some of this is helpful. I apologize if I overlooked any questions, it's past my bedtime.
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.
Sorry, I forgot to address this last night. I have the same issue with hives appearing in certain areas following an exposure to too much histamine or some other type of histamine-producing event. In my case, they usually show up on my torso or lower legs, rather than on my face. They can show up almost immediately or they can show up a day later. Occasionally they have appeared 2 days later (this happened after an allergic reaction to an antibiotic that caused an acute magnesium deficiency). Sometimes they fade within a day or so, and sometimes they are persistent (if the histamine exposure is ongoing and I fail to remove the source of exposure).Theresa wrote:I'm really glad you mentioned the issue of mast cells. I read the information and some additional stuff on the web and I definitely have some of the symptoms - diarrhea, gas, acid reflux, unexplained headaches that aren't severe but can last for days, anxiety, and runny nose on occasion. I also have had these itchy hives that appear on my face, just one at a time, that I've never been able to explain. Sometimes I have just eaten, but other times they appear just after I wake up, and haven't eaten anything or put anything on my face.
Do you recommend tackling a possible mast cell issue right away, or working on diet first? What is the best way to test your histamine tolerance - taking an anti-histamine or simply staying away from high histamine foods?
I find that antihistamines help to prevent the symptoms from becoming severe, but the only way that I have found to satisfactorily control/prevent the persistence of such symptoms is to avoid the food, medication, environmental antigen, or whatever is causing the problem. For example, a month or so ago someone posted about Enjoy Life Double Chocolate Chip Cookies. Since I rarely eat anything sweet these days (and pre-MC I was a sugarholic), I decided to try them. They're not half bad, and they don't cause any MC issues for me, but over time (as I began to eat more of them regularly), I began to develop mast cell issues. Itchy bumps would show up and instead of soon fading away, they would become a chronic issue. At first I thought that tree pollen was the problem, since it's at high levels these days, but eventually it dawned on me that the problem was the chocolate. Chocolate is a high-histamine food.
I stopped eating the cookies 2 days ago, and the hives/bumps/itchy areas seem to be fading away today. The problem with trying to control such issues with antihistamines (rather than diet changes) is that the antihistamine has to be in circulation in the blood as needed, to attach to histamine receptors before the antigens can attach to trigger a reaction. If/when an antigen beats the antihistamine to an H1 receptor, then that receptor will be activated and it will prompt the release of histamine from mast cells. Of course it takes a lot of activated receptors to produce a major reaction, but the bottom line is that it's almost impossible for an antihistamine to block all H1 receptors, so some degree of reaction is likely to escape the treatment. And once activated, an allergic reaction cannot be reversed by an antihistamine. Once the cat is out of the bag (IOW, once H1 receptors have been activated), then all an antihistamine can do is to stand by and watch the show.
By contrast, by removing the antigens from our diet, we can effectively preempt the possibility of a reaction. Even so, an antihistamine may still help, because for many of us, seasonal antigens (such as pollen) can not only cause classic allergy symptoms, but MC symptoms as well, if enough receptors are activated.
At any rate, FWIW, those are my views on the question of whether to avoid high-histamine foods or take an antihistamine when trying to control mast cell/histamine problems.
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.
I also lost some weight when I first started the SCD; I forgot to mention that before! When my diet was really restricted, I found it helpful to track my intake for a few days on a site like fitday.com, paleotrack.com, or any other free online food tracker. I realized that even though I wasn't going hungry, I was unintentionally undereating calories (and probably carbs too). Might help you make sure you're getting enough food to maintain/gain weight.
I haven't ever done the Enterolab testing. By the time I learned about it, I'd already eliminated a lot of potentially problematic foods anyway. The testing I did have early on was an IgG food intolerance test (blood test). I'm not sure I trust any test completely at this point ... especially enough for me to pay hundreds of dollars out of pocket for it! Just my personal opinion.
Kristen
I haven't ever done the Enterolab testing. By the time I learned about it, I'd already eliminated a lot of potentially problematic foods anyway. The testing I did have early on was an IgG food intolerance test (blood test). I'm not sure I trust any test completely at this point ... especially enough for me to pay hundreds of dollars out of pocket for it! Just my personal opinion.
Kristen
Hi friends,
Thank you again for these detailed responses. I'm so sorry for not writing sooner. A couple of days after my last post, I ended up in the hospital after experiencing an allergic reaction to the antibiotic Bactrim (a sulfonamide). I developed a full body rash and high fever. I was most worried about the fever, thinking it was an indication that my perianal abscess/fistula was severely infected (it had gotten worse around the same time), but the alarming symptoms were all due to the allergy. It was found that my kidneys were working too hard, so they kept me overnight to make sure things went back to normal. Sulfonamide allergy can also cause kidney issues, but luckily mine were due to dehydration. Also not good, but my levels went back to normal after lots of fluids. I had never stayed overnight in a hospital before, so it was an interesting experience, but I hope I don't have to do it again any time soon!
Anyway, I'm back to status quo right now. I was on Augmentin for two weeks which seemed to help the perianal issues, but now that the course is over, I'm having pain and lots of drainage again. Surgery to put in another drain may be necessary. I'm waiting to hear back from my surgeon.
My MC symptoms are back in full force now that I'm not on any antibiotics. They were improved on each antibiotic I took (Metronidazole/Ciprofloxacin, Bactrim, Augmentin) and I'm wondering if that is an indicator of anything. Tex, you said that Cipro commonly helps people with MC, but I was surprised that all of them had a positive effect.
Since I've been so sick and am really struggling to heal the fistula, I'm most likely going to try budesonide temporarily. I've had the pills for months, but really wanted to give diet a fair shot before going the medication route. At this point, I really want to try an extremely limited MC diet, but don't feel I can subject my body to more limitations while I'm so underweight. My gastroenterologist prescribed 3 months of budesonide starting at 9 mg/day for month 1, 6 mg/day for month 2, and 3 mg/day for month 3. I've seen many conversations on the forum discussing the importance of a slow taper and plan to talk to the GI doc about this. One month of the full dose doesn't seem like much time for the intestines to heal after having this disease for more than a decade. Is there a specific taper that is most recommended or does it just depend on the individual's response?
I was also wondering what you all thought about how to handle diet during the course of budesonide. I want to liberalize things a little bit in the beginning in order to gain weight, but don't intend on going back to processed foods. I know for sure that I should remain gluten free because I had celiac changes in my small intestine, but otherwise it's hard to know what I can or can't eat, the reason being that my previous elimination diet and trial with the SCD did not yield any obvious improvements. Assuming that budesonide works for me, I'm thinking that I would start the limited MC diet once I've gained some weight and feel a bit healthier.
I'm also going to talk to my GI and integrative docs about the mast cell issue, and see if I can get my vitamin D, magnesium, and B-12 levels checked. I look forward to telling them about the existence of the forum. Is it known among GI docs? It really should be. People with MC really need the support and our disease doesn't seem to be a major focus of the Crohn's and Colitis Foundation.
One last question... does anyone know of a good intestinal inflammation test to be used during budesonide and dietary changes to see if treatment is working? My fecal calprotectin test was in the normal range, so my GI said it is not a good indicator for me. My nutritionist passed along information about fecal eosinophil markers used in CC patients, but it was a small study.
Info from and link to article:
* The diagnostic accuracy of fecal calprotectin and lactoferrin is low [89]. In a small pilot study, fecal eosinophil markers such as eosinophil cationic protein (F-ECP) and eosinophil protein X (F-EPX) were positive in 92% and 67%, respectively, of 12 patients with active CC, and a rapid fall of both markers was seen after budesonide treatment [90].
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959332/
As always, I am truly thankful for your support and open ears. I was just watching an episode of Ellen the other day. Jane Fonda was on talking about aging and health. She said something to the effect of, as we age or have health issues, physically we can be going south in many ways, but our spirits can continue to grow and move upward. I thought others might benefit from hearing that. It's so hard to deal with the physical aspects of our chronic disease and figuring out how to control it is mentally exhausting, but our spirits grow as we move through the challenges dealt to us. None of us would be who we are if not for MC, and we are probably more understanding, caring, and compassionate people for it.
Theresa
Thank you again for these detailed responses. I'm so sorry for not writing sooner. A couple of days after my last post, I ended up in the hospital after experiencing an allergic reaction to the antibiotic Bactrim (a sulfonamide). I developed a full body rash and high fever. I was most worried about the fever, thinking it was an indication that my perianal abscess/fistula was severely infected (it had gotten worse around the same time), but the alarming symptoms were all due to the allergy. It was found that my kidneys were working too hard, so they kept me overnight to make sure things went back to normal. Sulfonamide allergy can also cause kidney issues, but luckily mine were due to dehydration. Also not good, but my levels went back to normal after lots of fluids. I had never stayed overnight in a hospital before, so it was an interesting experience, but I hope I don't have to do it again any time soon!
Anyway, I'm back to status quo right now. I was on Augmentin for two weeks which seemed to help the perianal issues, but now that the course is over, I'm having pain and lots of drainage again. Surgery to put in another drain may be necessary. I'm waiting to hear back from my surgeon.
My MC symptoms are back in full force now that I'm not on any antibiotics. They were improved on each antibiotic I took (Metronidazole/Ciprofloxacin, Bactrim, Augmentin) and I'm wondering if that is an indicator of anything. Tex, you said that Cipro commonly helps people with MC, but I was surprised that all of them had a positive effect.
Since I've been so sick and am really struggling to heal the fistula, I'm most likely going to try budesonide temporarily. I've had the pills for months, but really wanted to give diet a fair shot before going the medication route. At this point, I really want to try an extremely limited MC diet, but don't feel I can subject my body to more limitations while I'm so underweight. My gastroenterologist prescribed 3 months of budesonide starting at 9 mg/day for month 1, 6 mg/day for month 2, and 3 mg/day for month 3. I've seen many conversations on the forum discussing the importance of a slow taper and plan to talk to the GI doc about this. One month of the full dose doesn't seem like much time for the intestines to heal after having this disease for more than a decade. Is there a specific taper that is most recommended or does it just depend on the individual's response?
I was also wondering what you all thought about how to handle diet during the course of budesonide. I want to liberalize things a little bit in the beginning in order to gain weight, but don't intend on going back to processed foods. I know for sure that I should remain gluten free because I had celiac changes in my small intestine, but otherwise it's hard to know what I can or can't eat, the reason being that my previous elimination diet and trial with the SCD did not yield any obvious improvements. Assuming that budesonide works for me, I'm thinking that I would start the limited MC diet once I've gained some weight and feel a bit healthier.
I'm also going to talk to my GI and integrative docs about the mast cell issue, and see if I can get my vitamin D, magnesium, and B-12 levels checked. I look forward to telling them about the existence of the forum. Is it known among GI docs? It really should be. People with MC really need the support and our disease doesn't seem to be a major focus of the Crohn's and Colitis Foundation.
One last question... does anyone know of a good intestinal inflammation test to be used during budesonide and dietary changes to see if treatment is working? My fecal calprotectin test was in the normal range, so my GI said it is not a good indicator for me. My nutritionist passed along information about fecal eosinophil markers used in CC patients, but it was a small study.
Info from and link to article:
* The diagnostic accuracy of fecal calprotectin and lactoferrin is low [89]. In a small pilot study, fecal eosinophil markers such as eosinophil cationic protein (F-ECP) and eosinophil protein X (F-EPX) were positive in 92% and 67%, respectively, of 12 patients with active CC, and a rapid fall of both markers was seen after budesonide treatment [90].
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959332/
As always, I am truly thankful for your support and open ears. I was just watching an episode of Ellen the other day. Jane Fonda was on talking about aging and health. She said something to the effect of, as we age or have health issues, physically we can be going south in many ways, but our spirits can continue to grow and move upward. I thought others might benefit from hearing that. It's so hard to deal with the physical aspects of our chronic disease and figuring out how to control it is mentally exhausting, but our spirits grow as we move through the challenges dealt to us. None of us would be who we are if not for MC, and we are probably more understanding, caring, and compassionate people for it.
Theresa
I'm sorry to hear that you had to deal with that. I got zapped with Bactrim about a year ago, and it was bad enough without active MC. And yes, I had fever and various other symptoms, and it also finished off my magnesium reserves, and that knocked my kidneys for a loop. A severe magnesium deficiency leads to all kinds of problems, including dehydration. Did your doctors tell you the same thing that mine did? . . . that it's rare for someone to have an allergic reaction to it.Theresa wrote:I ended up in the hospital after experiencing an allergic reaction to the antibiotic Bactrim (a sulfonamide).
That's 2 for 2.Also, unless they gave you magnesium by IV while you were in the hospital, you may be deficient now. Please don't count on your doctors to warn you about magnesium deficiency, because it isn't even on their radar most of the time.
The "Catch-22" effect with MC is that if we are losing weight, it's because of poor digestion and malabsorption problems. Therefore we cannot gain weight until we control the inflammation and allow our gut to heal. The budesonide will allow you do do that faster (and it will stimulate your appetite), so it can be helpful. BUt please be aware that it does not provide a free meal ticket for most of us. We still have to avoid most of our main food sensitivities or budesonide may not resolve the symptoms.
You're correct that your doc's timetable for the budesonide treatment is rather unrealistic and too short to be successful in most cases. Weaning off budesonide seems to be most successful when it is done very, very slowly. If you become constipated, it's time to lower the dose. After you get down to 1 capsule (3 mg) per day, some members here stay on that dose for 2 weeks, while others continue for up to 4 weeks. And they follow the same general pattern as they continue to lower the dose, to 1 capsule every other day, then 1 every third day, and some go to 1 every fourth day. Others continue to taper to 5 or even 6 day intervals, especially if they have had problems withdrawing from budesonide successfully in the past. We all have different responses to medications and healing progress, so as Gabes would say, we have to kind of listen to what our body is telling us, and modify our treatment program accordingly, as needed. In general, slower is better, but there's no way to be sure what is likely to be optimal in each case.
Unfortunately that's usually counterproductive, because eating stuff that you cannot digest will not only not help, but it can make things worse and delay healing. Budesonide is not a magic pass to remission. It's only a tool to be used along the way. The sooner you heal your gut, the sooner you will begin to gain weight again. The secret to making the diet work is to eat safe foods, in large amounts. IOW, weight is determined by calorie intake, so take in plenty of calories by eating more of the few foods that are safe for you. Trying to eat a larger variety of foods, or foods that cause most of us to react, and thinking that will help you to gain weight is wishful thinking that almost never works out very well when trying to achieve remission from MC.Theresa wrote:I want to liberalize things a little bit in the beginning in order to gain weight,
Please don't be surprised if your docs are unfamiliar with mast cell issues and/or they claim that mast cells are not an issue with MC. There are precious few doctors in the world today who are qualified to treat mast cell issues associated with digestive issues. And if you tell your docs that you are getting your information from the Internet they will probably advise you to stay away from the Internet, unless they are very progressive.
Have you seen the Microscopic Colitis Foundation website?http://www.microscopiccolitisfoundation.org/
Fecal calprotectin results can be useful for distinguishing Crohn's disease or UC, but it is usually of little value for monitoring MC activity. Eosinophil counts are elevated with Crohn's, but not a reliable indicator of MC activity. You shouldn't need those tests to tell you when your MC is active — that's what clinical symptoms are for.
You're right on target about MC changing our lives, and some of the changes are indeed positive, though it's not easy to see that until after we have been in remission for a while.
The budesonide will help you to feel better faster, but please use it as an opportunity to fine-tune your diet, not as an opportunity to eat anything you crave.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
agree with Tex
use the budesonide time to fine tune your diet, and optimise your chance at wellness.
for the body to gain weight, it takes a multitude of things, the right nutrients/minerals, low amounts of inflammation, a good digestion process, minimal anxiety and stress and TIME!
eating foods that cause inflammation with hope of gaining weight, wont work and mostly it will be counterproductive to the long term goal of wellness.
The only accurate testing for MC type inflammation reaction's is 'listening to your body'
- the diameter, texture and colour of your BM's
- noting any symptoms and when /where they happen
- energy levels, mental focus, sleep quality
For now based on everything that has happened, my advice is still the same as the post above.
use the budesonide time to fine tune your diet, and optimise your chance at wellness.
for the body to gain weight, it takes a multitude of things, the right nutrients/minerals, low amounts of inflammation, a good digestion process, minimal anxiety and stress and TIME!
eating foods that cause inflammation with hope of gaining weight, wont work and mostly it will be counterproductive to the long term goal of wellness.
The only accurate testing for MC type inflammation reaction's is 'listening to your body'
- the diameter, texture and colour of your BM's
- noting any symptoms and when /where they happen
- energy levels, mental focus, sleep quality
For now based on everything that has happened, my advice is still the same as the post above.
A good starting point is meat and veges, home cooked, well cooked,
whether it be stews, soups, roasted meats with roasted vegetables, using a slow cooker,
avoid the main triggers, gluten, dairy, soy, eggs, minimise intake of processed items (even the gluten, soy free ones) - cereals, pasta, breads, biscuits.
there are some meal ideas in erica's post that you have been reading, and various meal ideas in other areas of the forum
http://www.perskyfarms.com/phpBB2/viewforum.php?f=53
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
starting with white rice, 1-2 vegetables, and the proteins that settle best.
the only change i would make is ensuring you are having good intake of Vit D3 and magnesium...One really good basis for the eating plan, to make soups and stews is home made bone broth. this contains loads of good natural gut healing ingredients in a form our body can absorb really well ( gelatin, collagen, minerals, amino acids) in most cases it is cheaper than supplements. the animal fat and good serves of protein are essential to healing.
I boil my veges in bone broth, cook rice in it, make lots of stews and soups.
I freeze precooked stews in meal portions in the freezer so I have spare meals on hand.
it can all be a bit overwhelming at first, but if you figure it out a meal at a time, a week at a time first figure out some options for lunch, then options for breakfast, then work on options for dinner, then options for snacks. what suits your lifestyle, routine, budget..
a good motto for Mc world is 'Progress not perfection' you are embracing some big changes so take it a change at a time... do the mental and emotional work of things as you do the eating plan changes.
each weekend i do a bit of a cook up so I have my breakfasts and lunches mostly sorted for the week ahead.
for now a good maintenance dose of Vit D3 would be good. without getting into the complexities, what doctors say is 'normal' can be a bit low for those with IBD's and inflammation.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama