hi Gabes,
I am so happy to have found this website and discussion board.
Thank you so much for your encouragement and suggestions.
I am here for the first time. Got diagnosed two days ago, but don't see
my doc to find out which kind of MC I have (I hope she knows!) til next week.
So I'm doing my own research and in the process I found Tex's book and this forum.
I am one of those with limiting physicalmentalemotional stuff so I am reading a little bit
at a time, and very happy with all I have read!
Thanks again for your post.
Sunny
Attn newbies or anyone struggling....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Sunny,
Welcome to our internet family. I hope that you can find the solutions that you are seeking here on the board, and in the book. The book should answer most of your questions about the disease, and about treating it, but please feel free to ask anything, anytime, here on the board.
Again, welcome aboard.
Tex
Welcome to our internet family. I hope that you can find the solutions that you are seeking here on the board, and in the book. The book should answer most of your questions about the disease, and about treating it, but please feel free to ask anything, anytime, here on the board.
Again, welcome aboard.
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
Sunny
welcome to 'our family' and I am glad my post helped a bit.
Take some deep breathes, and take your time to read (digest) all the various topics / discussions/ treatment protocols and things like Mast Cells. it may seem like you have landed on a planet other than earth, and you are struggling to understand what people are talking about!!
Don't be too hard on yourself, there is no mistakes, they are learnings.
Sadly there is not any guaranteed quick fix that we can suggest, it may take a bit to figure out what works best for you, at a pace that suits you....
There are some amazing, intelligent, caring, supportive, beautiful people in this family! that will share a hug, give you a shoulder if there is tears, and share the good moments and successes...
take care
welcome to 'our family' and I am glad my post helped a bit.
Take some deep breathes, and take your time to read (digest) all the various topics / discussions/ treatment protocols and things like Mast Cells. it may seem like you have landed on a planet other than earth, and you are struggling to understand what people are talking about!!
Don't be too hard on yourself, there is no mistakes, they are learnings.
Sadly there is not any guaranteed quick fix that we can suggest, it may take a bit to figure out what works best for you, at a pace that suits you....
There are some amazing, intelligent, caring, supportive, beautiful people in this family! that will share a hug, give you a shoulder if there is tears, and share the good moments and successes...
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
carrie1225
- Posts: 1
- Joined: Sat Nov 30, 2013 10:31 am
Hi Everyone, I am really happy to have found this website, for both me and my 82-yr old mother. She is the main reason I am here.
1. talked to her on thanksgiving day and I am concerned her MC is getting to the point she is thinking suicide!! I am hoping to find SOME help from you guys. Here;s the background: 82 with about 15 years of MC (collagen form with tons of bile). Endocort helped a bit in the past but is not helping anymore. Steroids don't seen to do much either. OTherwise, a pretty healthy person, which is kind of amazing. She went off gluten in the spring for a few months but said it didn't help so went back to gluten. (I think that was not a great decision, but...). Has a doctor of course, but not a GI specialist. She is pretty close to house-bound at this point because of the constant and unpredictable diarrhea. So, I am wondering where I sould start gathering information to try to help.
Second concern is for me: I don't want to develop this and have just in the last 8 months had to go off gluten because of stomach aches and nauseau everytime I eat wheat. Q.'s I have:
1. do you think MC starts off as food sensitivities that are ignored and get worse and worse over time?
2.Should my mom start with the Elimination diet and if so, will she see some improvement pretty fast?
3. I read about checking for D3 deficiency. What other blood test should she do to look for problems?
4. I read what Tex and others said about the AMP Floracel and that's what made me join this site. But are there ANY herbal/OTC remedies that actually might help?
5.For myself, is there any correlation between migraine and MC? My life was controlled by migraines from about age 41 until i went on an anti-migraine diet and really got them under control.(I'm 54 now). Any relationship between foods like citrus, bananas, chocolate and alcohol that raise migraine threshholds and foods that trigger MC?
I know your forum has tons of info, but I don't know where to start. I also apologize for being here on behalf of someone else, but my mother is just not able to be her own advocate right now and so I am hoping to step in and help.
Thanks for being on this Forum. Happy to join the Potty People...carrie1225
1. talked to her on thanksgiving day and I am concerned her MC is getting to the point she is thinking suicide!! I am hoping to find SOME help from you guys. Here;s the background: 82 with about 15 years of MC (collagen form with tons of bile). Endocort helped a bit in the past but is not helping anymore. Steroids don't seen to do much either. OTherwise, a pretty healthy person, which is kind of amazing. She went off gluten in the spring for a few months but said it didn't help so went back to gluten. (I think that was not a great decision, but...). Has a doctor of course, but not a GI specialist. She is pretty close to house-bound at this point because of the constant and unpredictable diarrhea. So, I am wondering where I sould start gathering information to try to help.
Second concern is for me: I don't want to develop this and have just in the last 8 months had to go off gluten because of stomach aches and nauseau everytime I eat wheat. Q.'s I have:
1. do you think MC starts off as food sensitivities that are ignored and get worse and worse over time?
2.Should my mom start with the Elimination diet and if so, will she see some improvement pretty fast?
3. I read about checking for D3 deficiency. What other blood test should she do to look for problems?
4. I read what Tex and others said about the AMP Floracel and that's what made me join this site. But are there ANY herbal/OTC remedies that actually might help?
5.For myself, is there any correlation between migraine and MC? My life was controlled by migraines from about age 41 until i went on an anti-migraine diet and really got them under control.(I'm 54 now). Any relationship between foods like citrus, bananas, chocolate and alcohol that raise migraine threshholds and foods that trigger MC?
I know your forum has tons of info, but I don't know where to start. I also apologize for being here on behalf of someone else, but my mother is just not able to be her own advocate right now and so I am hoping to step in and help.
Thanks for being on this Forum. Happy to join the Potty People...carrie1225
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi there Carrie
No apologies needed you are a wonderful person to help your mother, no one deserves to be trapped in their bathroom due to MC.
take a deep breath.... grab a cuppa, and we will take you on the yellow brick road to 'Oz' (Oz being Management of MC)
to answer your questions
1. there are multiple reasons/triggers for MC. the body reaching its limit to handle in sensitivities (food and other items) is one of the elements - other elements, genetics, hormones, infections, some medications
2. Yes Elimination diet is a good starting point, this helps to confirm triggers, and allow healing, an eating plan of 3-4 ingredients is a good start. the pace at which there is improvement depends on how long it will take the body to heal. It can be anything from 3 weeks to 3 months to even 3 years.
this can seem overwhelming at first. at this point i remind you to disregard everything you know about nutrition as declared by the experts... none of that applies in MC world..
3. Vit D3 levels are important, and maybe the Vit B, folate, iron levels. you need good levels of Vit D3 in your body to absorb nutrients, that is why it is top of the list, good levels of VitD3 also helps to minimise symptoms.
4. in early stages of healing, the body can be super sensitive. Herbal remedies can be a bit too strong. As you read through some of the discussions, mast cells/histamine is a common issue. there are OTC remedies that help with this.
5. Migraines, are very much linked to MC, linked to the Mast Cell/histamine connection.
Most IBD's are genetically related, so yes if you have some food sensitivities, you are in a risk category,
it will take some times to 'digest' (pun intended ) the information, and various elements of life with MC.
we have had quite a few people where the partner / daughter / mother of a MC'er is the one posting, researching and asking questions...
This 'family' is very supportive, you can ask anything, discussions about Poop, gas and various other aspects are common...
this is the place that we can talk about issues 'shame free'
No apologies needed you are a wonderful person to help your mother, no one deserves to be trapped in their bathroom due to MC.
take a deep breath.... grab a cuppa, and we will take you on the yellow brick road to 'Oz' (Oz being Management of MC)
to answer your questions
1. there are multiple reasons/triggers for MC. the body reaching its limit to handle in sensitivities (food and other items) is one of the elements - other elements, genetics, hormones, infections, some medications
2. Yes Elimination diet is a good starting point, this helps to confirm triggers, and allow healing, an eating plan of 3-4 ingredients is a good start. the pace at which there is improvement depends on how long it will take the body to heal. It can be anything from 3 weeks to 3 months to even 3 years.
this can seem overwhelming at first. at this point i remind you to disregard everything you know about nutrition as declared by the experts... none of that applies in MC world..
3. Vit D3 levels are important, and maybe the Vit B, folate, iron levels. you need good levels of Vit D3 in your body to absorb nutrients, that is why it is top of the list, good levels of VitD3 also helps to minimise symptoms.
4. in early stages of healing, the body can be super sensitive. Herbal remedies can be a bit too strong. As you read through some of the discussions, mast cells/histamine is a common issue. there are OTC remedies that help with this.
5. Migraines, are very much linked to MC, linked to the Mast Cell/histamine connection.
Most IBD's are genetically related, so yes if you have some food sensitivities, you are in a risk category,
it will take some times to 'digest' (pun intended ) the information, and various elements of life with MC.
we have had quite a few people where the partner / daughter / mother of a MC'er is the one posting, researching and asking questions...
This 'family' is very supportive, you can ask anything, discussions about Poop, gas and various other aspects are common...
this is the place that we can talk about issues 'shame free'
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 Carrie,
Welcome to our internet family. Gabes did a great job of addressing your questions, so all I can do is to fill in a little additional supporting or background information. In addition to the things that she listed as possible causes for the development and/or reactivation of MC, chronic stress is (IMO) a vital part of the process. It seems to be a common link that applies to all of us.
Instead of an elimination diet, if she would rather, you can order stool tests (and a sample collection kit) from EnteroLab (in Dallas, TX) that will detect antibodies to the main foods that are likely to cause autoimmune-type reactions that lead to the inflammation that results in the development of MC. It takes 2 to 3 weeks to receive the results (by email), but it is the fastest, surest, most reliable way to pinpoint food sensitivities that may be causing her symptoms. Here's a link to the lab tests, if you are interested in considering them. The elimination diet works, but it takes dedication and patience, whereas the lab tests are faster, and they remove most of the guesswork involved in making decisions about diet changes. Of course the downside to the lab tests are that they are more expensive than an elimination diet.
https://www.enterolab.com/StaticPages/TestInfo.aspx
There are 3 likely reasons why her attempt at trying a GF diet didn't produce any noticeable improvement in her symptoms:
1. The exclusion of gluten has to be 100 % (not just 99.9 %, for example). Unfortunately, even trace amounts of gluten due to cross-contamination in food, vitamin supplements, or whatever, can frustrate an exclusion diet.
2. A few months may not be long enough for some of us to see any significant improvement in our symptoms. If she has been reacting for years, then she probably has massive intestinal damage, and it will take several years for most of that intestinal damage to heal. Fortunately it won't take years for her to reach remission, but without any medication to mask the symptoms while the diet is healing the gut, it typically takes at least 6 months to a year to see major improvement. That said, some people are lucky, and they see noticeable improvement in a matter of weeks, or even days. Most of us are not that fortunate, though.
3. She almost surely has other food sensitivities, and the only way to reach remission by diet is to avoid all of our food and drug sensitivities. As long as we continue to eat even one of them, we will continue to react. Most of us are also sensitive to all dairy products, many or us are also sensitive to soy, and some of us are also sensitive to eggs. And some members here have other food sensitivities, as well.
And here's one other possibility: Many prescription drugs can cause MC. And if she is taking one or more medications that are triggering her inflammation, then she will not be able to reach remission until that drug (or those drugs) are discontinued. These include NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, beta blockers, and others. Obviously, these drugs do not cause MC for everyone who takes them, but they definitely cause some of us to react. And a few members here who were lucky enough to catch it early enough have been able to stop their MC and remain in remission simply by discontinuing and avoiding the drug or drugs that triggered their MC. Again though, most of us are not that lucky, and we have to make dietary changes in addition to avoiding any drugs that cause us to react.
As Gabes so accurately noted, inappropriate histamine reactions, or mast cell activation disorder (MCAD), are associated with migraines. When I was reacting, migraines were a regular feature for me, and they often forced me to skip work, and remain in bed, until they passed, because for me, they always led to severe nausea in addition to the excruciating pain, light sensitivity, etc. After I changed my diet and my gut did some healing, the migraines disappeared, and I haven't had one since. I've been in remission for over 9 years now, and I haven't even had so much as an ordinary headache (except for a time or 2 when I've accidentally bumped my head on something while working ). At any rate, my diet changes have been 100 % effective at preventing migraines.
The main point here though, is the observation that all of the foods that you mentioned (in that quote above) are high-histamine foods. Clearly, you are having histamine issues, and histamine issues are closely associated with both MC and migraines.
Again, welcome aboard, and as Gabes mentioned, please feel free to ask anything. We learn how to resolve our symptoms by sharing experiences and learning from others here.
Tex
Welcome to our internet family. Gabes did a great job of addressing your questions, so all I can do is to fill in a little additional supporting or background information. In addition to the things that she listed as possible causes for the development and/or reactivation of MC, chronic stress is (IMO) a vital part of the process. It seems to be a common link that applies to all of us.
Instead of an elimination diet, if she would rather, you can order stool tests (and a sample collection kit) from EnteroLab (in Dallas, TX) that will detect antibodies to the main foods that are likely to cause autoimmune-type reactions that lead to the inflammation that results in the development of MC. It takes 2 to 3 weeks to receive the results (by email), but it is the fastest, surest, most reliable way to pinpoint food sensitivities that may be causing her symptoms. Here's a link to the lab tests, if you are interested in considering them. The elimination diet works, but it takes dedication and patience, whereas the lab tests are faster, and they remove most of the guesswork involved in making decisions about diet changes. Of course the downside to the lab tests are that they are more expensive than an elimination diet.
https://www.enterolab.com/StaticPages/TestInfo.aspx
There are 3 likely reasons why her attempt at trying a GF diet didn't produce any noticeable improvement in her symptoms:
1. The exclusion of gluten has to be 100 % (not just 99.9 %, for example). Unfortunately, even trace amounts of gluten due to cross-contamination in food, vitamin supplements, or whatever, can frustrate an exclusion diet.
2. A few months may not be long enough for some of us to see any significant improvement in our symptoms. If she has been reacting for years, then she probably has massive intestinal damage, and it will take several years for most of that intestinal damage to heal. Fortunately it won't take years for her to reach remission, but without any medication to mask the symptoms while the diet is healing the gut, it typically takes at least 6 months to a year to see major improvement. That said, some people are lucky, and they see noticeable improvement in a matter of weeks, or even days. Most of us are not that fortunate, though.
3. She almost surely has other food sensitivities, and the only way to reach remission by diet is to avoid all of our food and drug sensitivities. As long as we continue to eat even one of them, we will continue to react. Most of us are also sensitive to all dairy products, many or us are also sensitive to soy, and some of us are also sensitive to eggs. And some members here have other food sensitivities, as well.
And here's one other possibility: Many prescription drugs can cause MC. And if she is taking one or more medications that are triggering her inflammation, then she will not be able to reach remission until that drug (or those drugs) are discontinued. These include NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, beta blockers, and others. Obviously, these drugs do not cause MC for everyone who takes them, but they definitely cause some of us to react. And a few members here who were lucky enough to catch it early enough have been able to stop their MC and remain in remission simply by discontinuing and avoiding the drug or drugs that triggered their MC. Again though, most of us are not that lucky, and we have to make dietary changes in addition to avoiding any drugs that cause us to react.
Carrie wrote:Any relationship between foods like citrus, bananas, chocolate and alcohol that raise migraine threshholds and foods that trigger MC
As Gabes so accurately noted, inappropriate histamine reactions, or mast cell activation disorder (MCAD), are associated with migraines. When I was reacting, migraines were a regular feature for me, and they often forced me to skip work, and remain in bed, until they passed, because for me, they always led to severe nausea in addition to the excruciating pain, light sensitivity, etc. After I changed my diet and my gut did some healing, the migraines disappeared, and I haven't had one since. I've been in remission for over 9 years now, and I haven't even had so much as an ordinary headache (except for a time or 2 when I've accidentally bumped my head on something while working
). At any rate, my diet changes have been 100 % effective at preventing migraines.The main point here though, is the observation that all of the foods that you mentioned (in that quote above) are high-histamine foods. Clearly, you are having histamine issues, and histamine issues are closely associated with both MC and migraines.
Again, welcome aboard, and as Gabes mentioned, please feel free to ask anything. We learn how to resolve our symptoms by sharing experiences and learning from others here.
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
As a newby, I really love your post and the time you took to write it!I was diagnosed 18 months ago , on entocort, then off and fairly well controlled. I have no idea what my intolerance s are, but have some suspicions. Within the past month I've hand two short term severe bouts of Vomiting and diarrhea and suspect it is related to the mc. I will start doing processes of elimination, ( pardon the pun) and hope to get more insight. Love and Blessings to all.
"When you gaze too long t your problems, you will 'sink' "
"When you gaze too long t your problems, you will 'sink' "
Happy, Healthy, Joyful Free for me
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Lizbeth
gday from Australia, welcome to the group, and sympathies that you had to find us.
I wish I could offer the quick fix, guaranteed to work solution. the reality is, there isnt one persay.
Take your time to read some of the posts, use the search function, feel free to ask questions. Dont be nervous or shy if you have questions about poop, gas, symptoms etc...
You mention vomitting, this was an issue for me, it was mast cell/histamine related. When you have some time, and a clear head, take the time to read about mast cell/histamines, it is very common issue for MC'ers (i would guesstimate 60-70%)
reading other threads and discussions may bring to the fore something that relates to you, or a symptom that you didnt link to MC.
Joint pain, foggy brain, restless legs are all very common with gluten inflammation...
take a few deep breaths, relax and get ready to take control of your health
healing hugs
gday from Australia, welcome to the group, and sympathies that you had to find us.
I wish I could offer the quick fix, guaranteed to work solution. the reality is, there isnt one persay.
Take your time to read some of the posts, use the search function, feel free to ask questions. Dont be nervous or shy if you have questions about poop, gas, symptoms etc...
You mention vomitting, this was an issue for me, it was mast cell/histamine related. When you have some time, and a clear head, take the time to read about mast cell/histamines, it is very common issue for MC'ers (i would guesstimate 60-70%)
reading other threads and discussions may bring to the fore something that relates to you, or a symptom that you didnt link to MC.
Joint pain, foggy brain, restless legs are all very common with gluten inflammation...
take a few deep breaths, relax and get ready to take control of your health
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
Hi Lizbeth,
Welcome to our internet family. As Gabes mentioned, there is a strong possibility that the symptoms you mentioned (vomiting along with diarrhea) may be caused by inappropriate mast cell degranulation as a result of a condition known as mast cell activation syndrome (MCAD). I also had this problem as a part of my reaction cycle before I changed my diet.
You can find more information on how mast cell issues are associated with MC by clicking on the links found in the post at this link.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. As Gabes mentioned, there is a strong possibility that the symptoms you mentioned (vomiting along with diarrhea) may be caused by inappropriate mast cell degranulation as a result of a condition known as mast cell activation syndrome (MCAD). I also had this problem as a part of my reaction cycle before I changed my diet.
You can find more information on how mast cell issues are associated with MC by clicking on the links found in the post at this link.
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.
Hi guys
Thanks for this group it's great to get some more information.
I'm a bit over things at the moment but hopeful that I'm going to get somewhere soon. I am a bit of a mystery to my GI and immunologist.
I was diagnosed coeliac post gastroscopy in Sept 2012 after years of diarrhoea. I had negative coeliac antibodies but a positive HLA DQ2/8 genotype so they decided coeliac was the way to go... Roll on 18 months later and I am worse.
I have a repeat gastroscopy and a colonoscopy also this time showing coeliac like changes in the duodenum and microscopic colitis through the whole large bowel... I am now weaning off budesonide after only 7 weeks on 9mg, and have been on pentasa for 3 weeks. I'm still pretty good (apart from today) but wonder what is next. My GI has left town and I have to see a new guy next week. I have seen an immunologist who says she has more questions than answers at this time. She thinks my slightly low IgA and IgG may be causing the symptoms or a rare kind of food allergy with eosinophil involvement...
Any tips/advice/support gratefully received!
I've already tried low FODMAP diet with no real difference and have been dairy free before to no avail (before I was GF) I am eating a normal diet at the moment cause I'm in a 'coeliac twilight zone' where they can't really tell me if I am or am not... The only diagnostic label at the moment is ??autoimmune enteropathy. I just want to know what's wrong with me so I can get on and get well! sorry, little rant there :)
Thanks for this group it's great to get some more information.
I'm a bit over things at the moment but hopeful that I'm going to get somewhere soon. I am a bit of a mystery to my GI and immunologist.
I was diagnosed coeliac post gastroscopy in Sept 2012 after years of diarrhoea. I had negative coeliac antibodies but a positive HLA DQ2/8 genotype so they decided coeliac was the way to go... Roll on 18 months later and I am worse.
I have a repeat gastroscopy and a colonoscopy also this time showing coeliac like changes in the duodenum and microscopic colitis through the whole large bowel... I am now weaning off budesonide after only 7 weeks on 9mg, and have been on pentasa for 3 weeks. I'm still pretty good (apart from today) but wonder what is next. My GI has left town and I have to see a new guy next week. I have seen an immunologist who says she has more questions than answers at this time. She thinks my slightly low IgA and IgG may be causing the symptoms or a rare kind of food allergy with eosinophil involvement...
Any tips/advice/support gratefully received!
I've already tried low FODMAP diet with no real difference and have been dairy free before to no avail (before I was GF) I am eating a normal diet at the moment cause I'm in a 'coeliac twilight zone' where they can't really tell me if I am or am not... The only diagnostic label at the moment is ??autoimmune enteropathy. I just want to know what's wrong with me so I can get on and get well! sorry, little rant there :)
Hi Kate,
Welcome to our internet family. Your doctors seem to be much more generous at handing out celiac diagnoses than ours here in the States. Here, it almost takes an act of Congress to get a celiac diagnosis unless the villi of our small intestine is in shambles.
The number of gastroenterologists who understand the disease and know how to properly treat it is slightly greater, but they are still very difficult to find, and probably at least 90–95 % of GI docs still don't have the foggiest idea how to treat MC, simply because they refuse to recognize that the inflammation is perpetuated by food sensitivities. Most of them continue to cling to a false assumption made decades ago and rather than to update their education, they continue to insist that diet has nothing to do with MC.
If you need some encouragement to convince you to make the lifestyle changes necessary to control this disease, and get your life back, please read some of the many success stores posted by members of this site:
Member Success Stories
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. Your doctors seem to be much more generous at handing out celiac diagnoses than ours here in the States. Here, it almost takes an act of Congress to get a celiac diagnosis unless the villi of our small intestine is in shambles.
Trust me, if you have a celiac gene, and a microscopic colitis diagnosis, you are sensitive to gluten. I don't know of anyone who has a celiac gene and MC who is not gluten-sensitive. If you want to get your life back, you will need to totally avoid all gluten, all dairy products, and probably all soy and legume-based foods and ingredients. And I don't mean that you simply need to minimize them in your diet. I mean that you have to avoid even the tiniest traces of those foods. A tiny crumb is enough to make most of us react. Many gastro docs believe that lactose is a problem with dairy products for people who have intestinal inflammation, and that is certainly true, but the real problem is the casein. Casein is the primary protein in all dairy products, and it causes most of us to produce casein antibodies, in the same way that gluten promotes antibody production against various gluten peptides. Likewise for soy, for those of us who are sensitive to it (and most of us are sensitive to it). I'm one of the lucky few who are not sensitive to soy.Kate wrote:I am eating a normal diet at the moment cause I'm in a 'coeliac twilight zone' where they can't really tell me if I am or am not...
There's nothing rare about the food sensitivities that accompany microscopic colitis. When the genes that predispose to MC are triggered, the genes that predispose to celiac disease are also triggered, and that makes us vulnerable to certain other food sensitivities due to a phenomenon known as molecular mimicry. There are only a handful of allergists/immunologists in the world who understand this disease, and how to treat it, and they were all trained at the Brigham and Women's Hospital in Boston (here in the States), under the guidance of Dr. Maria Castells. The rest of them know virtually nothing about diagnosing the type of food sensitivities that we experience with MC, let alone understanding how to treat these sensitivities.Kate wrote:I have seen an immunologist who says she has more questions than answers at this time. She thinks my slightly low IgA and IgG may be causing the symptoms or a rare kind of food allergy with eosinophil involvement...
The number of gastroenterologists who understand the disease and know how to properly treat it is slightly greater, but they are still very difficult to find, and probably at least 90–95 % of GI docs still don't have the foggiest idea how to treat MC, simply because they refuse to recognize that the inflammation is perpetuated by food sensitivities. Most of them continue to cling to a false assumption made decades ago and rather than to update their education, they continue to insist that diet has nothing to do with MC.
If you need some encouragement to convince you to make the lifestyle changes necessary to control this disease, and get your life back, please read some of the many success stores posted by members of this site:
Member Success Stories
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome Kate
(also sympathies that you had to find us)
As Tex mentioned about Gluten, there are many MC'ers that dont have any celiac genes, but do react to Gluten.
Gluten and Dairy are considered big irritants for any IBD.
The other aspect is whether the GI and/or doctor calls it MC, or UC or autoimmune enteropathy or IBS. the symptoms are an indicator that your gut is inflammed and reactive. medication can slow motility and make life easier, but long term this is not a good solution.
Going Gluten and Dairy Free is great start (as Tex mentioned not mostly it kinda has to be always). If you can eliminate all Soy and legumes that would be really good.
Eating low inflammation well cooked, protein and vegetable meals (low fibre, plain/bland) will also help alot.
Rather than doing a strict Fodmaps or Gaps or Paleo, keep a journal, listen to your body. keep note of food/supplements/activities and any symptoms.
For me, and many others, when the inflammation is high (ie constant symptoms) avoiding food items and supplements with lots of ingredients helps too. in the early days I keep my meals to 3-5 ingredients max. Over time as your gut heals you can expand this.
If you have been reading some of the posts and discussions, it can sound very overwhelming and 'out there' at first. The thought of giving up favourite foods, cuisines, takeaway feels like punishment. As you read the posts it kinda sucks that there is no quick fix or easy cure.
the harsh (and sad) reality is, things like this are 'for life' you cant eradicate it. Although with a bit of planning, diligence, patience you can live with it, manage it and not let it rule your life.
Tex's book is great, it is also a fantastic resource not just for you, but for partners/family/friends that are struggling to understand what you are experiencing.
Read through the posts, and the topic areas aimed at newbies. take your time, let it digest a bit. Feel free to keep asking questions.
Hope this helps
Where in NZ are you? I have a few friends that live near Christchurch.
take care Kate
(also sympathies that you had to find us)
As Tex mentioned about Gluten, there are many MC'ers that dont have any celiac genes, but do react to Gluten.
Gluten and Dairy are considered big irritants for any IBD.
The other aspect is whether the GI and/or doctor calls it MC, or UC or autoimmune enteropathy or IBS. the symptoms are an indicator that your gut is inflammed and reactive. medication can slow motility and make life easier, but long term this is not a good solution.
Going Gluten and Dairy Free is great start (as Tex mentioned not mostly it kinda has to be always). If you can eliminate all Soy and legumes that would be really good.
Eating low inflammation well cooked, protein and vegetable meals (low fibre, plain/bland) will also help alot.
Rather than doing a strict Fodmaps or Gaps or Paleo, keep a journal, listen to your body. keep note of food/supplements/activities and any symptoms.
For me, and many others, when the inflammation is high (ie constant symptoms) avoiding food items and supplements with lots of ingredients helps too. in the early days I keep my meals to 3-5 ingredients max. Over time as your gut heals you can expand this.
If you have been reading some of the posts and discussions, it can sound very overwhelming and 'out there' at first. The thought of giving up favourite foods, cuisines, takeaway feels like punishment. As you read the posts it kinda sucks that there is no quick fix or easy cure.
the harsh (and sad) reality is, things like this are 'for life' you cant eradicate it. Although with a bit of planning, diligence, patience you can live with it, manage it and not let it rule your life.
Tex's book is great, it is also a fantastic resource not just for you, but for partners/family/friends that are struggling to understand what you are experiencing.
Read through the posts, and the topic areas aimed at newbies. take your time, let it digest a bit. Feel free to keep asking questions.
Hope this helps
Where in NZ are you? I have a few friends that live near Christchurch.
take care Kate
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama