Dear Potty Family,
I'm writing from France.
I've been diagnosed with LC in October 2013. Since then, I've been 2 times treated with Entocort (1st time: 1 month 9mg, 1 month 6mg, 1 month 3mg | 2d time: 1 month 6 mg, 1 month 3 mg).
It was quite working on me until I finish the treatment. The second time I've used Entocort & I did stop Gluten for 2 months as far as my GI doctor asked me to try it (He's quite a good one, really comprehensive... until now!). It has been really better but the diet is really hard to follow properly. Why ? I'm a 29 years old guy working in Paris - I'm working in an international company which let me travel sometimes. Very great work I was dreaming of as a student. But everytime I'll travel, it will be full of Immodium. And even when I'm not travelling, everyday is a fight.
I'm living this condition since I'm 21 (it began with yellow stool & abdominal cramps). When I was 27, I finaly decided to find what was the problem. I didn't do my investigation in the right order :
- First I met a doctor specialized in people with Candida cause I was sure to have a problem with that (I thought about it because more than my abdominal pains, diarhea etc, I was also sooo tired & so depressed). I did some tests (just like the Enterolab ones ?) you can't do in France. My blood was sent in Belgium (RP Lab - Roman Pais - http://www.rplab.be/en/) & we discovered quite a problem with candida (tartarate + arabinitol) + food intolerances such as rice, malt, corn, mushrooms... I did a diet for 6 months without sugar + I was treated naturally with Colloidal silver. I was a bit better for a while but I lost 22 pounds which wasn'treally good. I then stop seeing that doctor which was 150 € per visit ! I'll never know if I really had a problem with Candida & if I got rid of it but I think so.
- 8 months later I first met my actual GI doctor & did stool tests, blood tests, Thyroid tests etc. Stool tests showed nothing. Blood tests showed lack of D vitamin (what a surprise!), lack of good Cholesterol. Thyroid was "quite" good. No reaction to gluten (iga/igb). Then in October 2013 I did my first colonoscopy & we found my LC as I've explained at the beggining of this post.
Today, I'm lost.
I know how to deal with life everyday but it's thanks to immodium pills or even Codeine pills which work quite well on me. Problem with Immodium is that it's too efficient on me & then i get constipated for 2 days (with 2 pills a morning) & I get cramps until the third day where my stools take their revenge. It's really hard for me to find the right food at lunch. It's not always possible to say no when I have a business dinner or to explain my condition.
I've got a great job, a good life in Paris, nice friends (some of them know about my condition), very comprehensive parents (who make me gluten free dinners when I go to their house!). But I'm not happy. I don't have a girlfriend, not because I'm too shy, ugly or with no experience. I just think I got stucked into my condition know & my last relationships were a nightmare cause I was too irritable & really tired(And I know I was like this because I was not feeling well & I had no patience with anyone). Maybe I haven't meet the right one but how hard it is to open your heart to someone with LC ! When a girl wants to do so much things with you at the beggining of a realtionship & you don't even know how you'll manage the next cinema, week-end or go to sleep to her flat ! (Good thing it make me laugh writing this).
I'm really getting depressed & tired now about all this. I want to do so much things in my life & I've already started a good carrier but I feel like it won't be possible to reach all my objectives; I wanted to try to start a new life in US or Canada in the next 2 years (I've discovered Toronto with my ex GF & US with work) but I'm totally stuck now cause I'm too focused on my condition. I think I also want to leave France as if getting a new life will heal my problems. Something Tex did write in a post yesterday made me think about writing this post : I'm totally perfectionist & control-freak. I'm in charge of a person @work and everything is ok, but I know I'm always in the control (but I know is also helped me get the carrier I have today).
I'm not looking for any psychologist here don't worry hahaha ! I'm just looking for some tips/advices to control LC & stop beeing controled by it like this. Sometimes I'm able to do it, sometimes not. This last month not anymore. Here are some questions I really need to ask to all of you :
1) I'm not sure to understand everything about mast-cells & histamine. Would it help me to get some Clarytin ?
2 ) If I had to choose between Codeine & Immodium what should I use ? Immodium is good to block me but then I'm really constipated (I can feel my stools blocked 24 hours later I took it). Codeine makes my bowels "sleep" : I then feel no pain.
3 ) In a week, if I'm Gluten free every evening & if I have sometimes to eat Gluten at lunch is it just like doing nothing ? (No possibility to heal ?)
4) Enterolab tests are they really valuable ?
5) I took 100.000 UI D vitamins today. I know I still have a lack of it. Should I take this more regularly ?
thanks a lot to all of you for this great Forum & for you answers.
Best,
Massimo
Padawan Potty
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome to our family, Massimo!
We have all felt the frustration you are feeling. This disease is very consuming. You can turn things around though, starting with the food sensitivity issues. We are gluten free (totally), and usually dairy free, soy free, and sometimes egg free. It's important to eliminate the foods that cause your body to react.
You should try a very basic diet of a meat and a well cooked (peeled) veggie, and bone broth for a while to get things to calm down. Once you find meat that agrees with you, you can try another. Lamb or turkey work well to start with. Veggies like zucchini, winter squash, carrots, & green beans can be tried, but make sure they are peeled and well cooked. If you simplify your meals, theres a better chance your gut will settle down. You can try some apple sauce or ripe banana.
I didn't take any supplements either, due to hidden ingredients. Processed foods are out for now, as there are too many unknowns in them.
It seems like a confining diet, and it is, but it is necessary to heal.
Enterolab tests are a great way to get a hold on your food sensitivities quickly. It was the best money I've spent! :)
Our administrator (Tex) on this site, wrote a book on our type of colitis that you really should read. If you scroll to the top of the page, it's on the upper right side.
I tend to be a bit of a control freak, too. That is not a good way to be for us! We have to learn to tame the stress with exercise, or meditation or just deep breathing. Stress is the wild card in this disease.
Have you had your Vitamin D level checked so you know where it is? People with IBD's have issues with low Vitamin D.
Please let us guide you to better health...it can be done, but it takes time and patience. It won't go away over night....and that's why we are here to support you, so you can get your life back again!
We have all felt the frustration you are feeling. This disease is very consuming. You can turn things around though, starting with the food sensitivity issues. We are gluten free (totally), and usually dairy free, soy free, and sometimes egg free. It's important to eliminate the foods that cause your body to react.
You should try a very basic diet of a meat and a well cooked (peeled) veggie, and bone broth for a while to get things to calm down. Once you find meat that agrees with you, you can try another. Lamb or turkey work well to start with. Veggies like zucchini, winter squash, carrots, & green beans can be tried, but make sure they are peeled and well cooked. If you simplify your meals, theres a better chance your gut will settle down. You can try some apple sauce or ripe banana.
I didn't take any supplements either, due to hidden ingredients. Processed foods are out for now, as there are too many unknowns in them.
It seems like a confining diet, and it is, but it is necessary to heal.
Enterolab tests are a great way to get a hold on your food sensitivities quickly. It was the best money I've spent! :)
Our administrator (Tex) on this site, wrote a book on our type of colitis that you really should read. If you scroll to the top of the page, it's on the upper right side.
I tend to be a bit of a control freak, too. That is not a good way to be for us! We have to learn to tame the stress with exercise, or meditation or just deep breathing. Stress is the wild card in this disease.
Have you had your Vitamin D level checked so you know where it is? People with IBD's have issues with low Vitamin D.
Please let us guide you to better health...it can be done, but it takes time and patience. It won't go away over night....and that's why we are here to support you, so you can get your life back again!
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Hi Massimo,
Welcome to our internet family. Linda posted some excellent information, so I will just try to answer some of your questions.
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?
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Linda posted some excellent information, so I will just try to answer some of your questions.
Here are some links to short articles that provide some basic information about mast cell problems associated with MC, and how to treat them:Massimo wrote:1) I'm not sure to understand everything about mast-cells & histamine. Would it help me to get some Clarytin ?
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?
Imodium is much safer to use than narcotic-based painkillers such as Codeine, because your bowels can become impacted while taking Codeine and you will not feel it. This can lead to a life-threatening situation before you realize what's happening. With Imodium, at least you can feel the pain, so you know that you have a problem. Maybe less Imodium would still help, but without causing so much constipation.Massimo wrote:2 ) If I had to choose between Codeine & Immodium what should I use ? Immodium is good to block me but then I'm really constipated (I can feel my stools blocked 24 hours later I took it). Codeine makes my bowels "sleep" : I then feel no pain.
Yes, unfortunately eating gluten once a week will not allow your intestines to heal, at least not by any significant amount. The half-life of the antibodies that result from eating gluten is 120 days. That means that we continue to feel the effect of existing antibodies for a long, long time. Another way to look at it is that the antibody level decays very little in 1 week. That means that if we boost the antibody level on a weekly basis (by eating gluten every week), then the level will remain relatively high at all times. For sure, the antibody level will remain above our reaction threshold, and that will cause us to continue to react, and it will keep our gut inflamed.Massimo wrote:3 ) In a week, if I'm Gluten free every evening & if I have sometimes to eat Gluten at lunch is it just like doing nothing ? (No possibility to heal ?)
Those tests are not essential, but they make identifying our food sensitivities much easier, and the results are reliable. The test results remove all doubt about which foods we need to avoid. Trying to do the same thing by trial and error testing can take a long time, and you still may not be sure about the results of your trials, because trial and error diet testing does not always produce clear results.Massimo wrote:4) Enterolab tests are they really valuable ?
That's a lot of vitamin D. If you know that your vitamin D level is deficient, then using that dose once per week (not daily) for another week or so would probably help, but it's safer to use half that amount (50,000 IU per week) for about 8 weeks, and then have your vitamin D level tested. It's usually easier to look at vitamin D treatment on a daily basis (rather than on a weekly basis). If you are severely vitamin D deficient, then 15,000 IU per day is OK, but after your vitamin D level is no longer in the deficient range, it's best to keep the daily dosage below 10,000 IU, because long-term treatment at 20,000 IU or more (per day) can lead to toxic levels after about 6 months or so of treatment at 20,000 IU or more per day (for some individuals).Massimo wrote:5) I took 100.000 UI D vitamins today. I know I still have a lack of it. Should I take this more regularly ?
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.
Massimo,
Welcome to this group. I hope you'll find helpful information here.
Regarding Immodium, I take one pill every second or third day. I could never take it daily. I'm not crazy about how it makes me feel, but it is a lifesaver when traveling.
I am positive that stress played a role in my developing LC. I was a teacher for 35 years, thus always had to be in control, extremely detail-oriented, and constant verbal interaction. In addition, I was President of my local teacher's union, and stress naturally goes with that job. During this time, my mother had a 12-year long illness, then died, so it was added stress.
I found that exercise helped me immensely after the initial time when I could barely leave the house. Walking, yoga, Pilates all helped me feel better.
I was diagnosed in March, 2011, and only in the last year did I begin to suspect mast cell issues. When I started to take a daily anti-histamine, I saw quite a bit of improvement. What led me to that was tingling/itching in my hands during exercise, and flushing in my face after eating higher histamine foods. People can always tell if I've had red wine, because I get very red cheeks!
Patience and perseverance are the keys to managing this disease, for sure.
Welcome to this group. I hope you'll find helpful information here.
Regarding Immodium, I take one pill every second or third day. I could never take it daily. I'm not crazy about how it makes me feel, but it is a lifesaver when traveling.
I am positive that stress played a role in my developing LC. I was a teacher for 35 years, thus always had to be in control, extremely detail-oriented, and constant verbal interaction. In addition, I was President of my local teacher's union, and stress naturally goes with that job. During this time, my mother had a 12-year long illness, then died, so it was added stress.
I found that exercise helped me immensely after the initial time when I could barely leave the house. Walking, yoga, Pilates all helped me feel better.
I was diagnosed in March, 2011, and only in the last year did I begin to suspect mast cell issues. When I started to take a daily anti-histamine, I saw quite a bit of improvement. What led me to that was tingling/itching in my hands during exercise, and flushing in my face after eating higher histamine foods. People can always tell if I've had red wine, because I get very red cheeks!
Patience and perseverance are the keys to managing this disease, for sure.
Suze
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome!
but sorry you had to find us.
I can totally empathise about the work / travel / lifestyle / dating situations, and what that means with MC in the mix.
I had digestion issues my whole life, and was diagnosed with MC at age 40.
When I was diagnosed I was doing quite a bit of domestic and international travel (i worked for Eurocopter in Australia and travelled to Marignane)
If you are super organised, and have the right accommodation like a self cater kitchen, it works ok.
right now things seem a bit overwhelming and having symptoms does tire you.
first steps, accept the reality of
- there is no quick fix /magic pill
- there is no guaranteed solution for all
- there will be some lifestyle changes
next steps, figure out your MC management plan, ie what medications, how often; eating plan, and what works for you;
the symptoms will fade away and you will see the rainbow after the storm!
This forum is like a family, it is a group of caring, supportive, knowledgeable people that sincerely want you to get your life back and will do what they can to help.
Tex has given you the links to the key pieces of information, this will help immensely.
Good luck!
but sorry you had to find us.
I can totally empathise about the work / travel / lifestyle / dating situations, and what that means with MC in the mix.
I had digestion issues my whole life, and was diagnosed with MC at age 40.
When I was diagnosed I was doing quite a bit of domestic and international travel (i worked for Eurocopter in Australia and travelled to Marignane)
If you are super organised, and have the right accommodation like a self cater kitchen, it works ok.
right now things seem a bit overwhelming and having symptoms does tire you.
first steps, accept the reality of
- there is no quick fix /magic pill
- there is no guaranteed solution for all
- there will be some lifestyle changes
next steps, figure out your MC management plan, ie what medications, how often; eating plan, and what works for you;
the symptoms will fade away and you will see the rainbow after the storm!
This forum is like a family, it is a group of caring, supportive, knowledgeable people that sincerely want you to get your life back and will do what they can to help.
Tex has given you the links to the key pieces of information, this will help immensely.
Good luck!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
First, I'd like to thank you so much for all your answers : Linda, Tex, Suze, Gabes :)
I did read a lot about Mast Cells now and I've understood much more about it, thx to Tex links - i've also read a very interesting article from a GI specialized french association that, if you can read french, is here :(http://www.fmcgastro.org/postu-main/pos ... raitement/)
In the references of this article I found this fyi : Klooker TK, Braak B, Koopman KE et al The mast cell stabiliser ketotifen decreases visceral hypersensitivity and improves intestinal symptoms in patients with irritable bowel syndrome. Gut. 2010 ; 59: 1213-21
The french article try to give new explanations for hyper sensitivity from people with IBS, especially people with D - It says "Chez les malades diarrhéiques, un excès de médiateurs libérés par les mastocytes (PGE2, leucotriène B4) a été rapporté. " which means that people with IBS-D, there was an excess of mediators liberated from Mastocytes (PGE2, leucotriene B4).
Hope these new investigations from 2013 may be interesting for all of us, I'll keep investigate & share with you.
I just have new questions about my first post & your different answers.
1) I'll see if I'll do an Enterolab test cause I think I'm quite able to know now which foods are not working with me. I've done different diets until know like sugar-free, yeast-free, GF... Now I'm trying GF + dairy free but I'm not really sure about eggs ? I need eggs in the Paleo oriented diet I'd like to try. I'm actually doing a lot of muscle devt exercices & I need a lot of proteins !
Moreover, I'm not sure about stopping Rice - Is there anyone who is intolerant to rice ? I had this intolerance mentionned in the belgium tests I've done but I never trusted these results. I'm sure a low carb diet can be really helping, but stop all carbs... I'm not a big fan !
2) What about tobacco ? I'm smoking 10 cigarettes/day... I know it's not good, I just want to know if it increase inflammation - I think it does in CHron's but our condition is different.
3) What about alcool ?(I only drink Vodka or Rhum - not Whisky or beer which is Malt) in my friday/saturday evenings if I go out (not every week).
4) I'm really conscious that even if I do my best, I won't be able to follow the diet everyday - not because I don't want to (cause I just love to cook so I know how to make good recipes with "nothing" - I'm half italian ;) ) but because there is always a Gluten accident that can happen etc. I'm not Celiac, I had a colonoscopy, stool tests, blood test showing nothing about Gluten. I know that LC people react the same to Gluten than Celiac people do. But we have what is called hypersensitivity, and I'm not sure that if we stop eating Gluten for 2 months and then eat pasta, the inflammation will start from the beggining like with celiac disease... ?
Thx again !
Max
I did read a lot about Mast Cells now and I've understood much more about it, thx to Tex links - i've also read a very interesting article from a GI specialized french association that, if you can read french, is here :(http://www.fmcgastro.org/postu-main/pos ... raitement/)
In the references of this article I found this fyi : Klooker TK, Braak B, Koopman KE et al The mast cell stabiliser ketotifen decreases visceral hypersensitivity and improves intestinal symptoms in patients with irritable bowel syndrome. Gut. 2010 ; 59: 1213-21
The french article try to give new explanations for hyper sensitivity from people with IBS, especially people with D - It says "Chez les malades diarrhéiques, un excès de médiateurs libérés par les mastocytes (PGE2, leucotriène B4) a été rapporté. " which means that people with IBS-D, there was an excess of mediators liberated from Mastocytes (PGE2, leucotriene B4).
Hope these new investigations from 2013 may be interesting for all of us, I'll keep investigate & share with you.
I just have new questions about my first post & your different answers.
1) I'll see if I'll do an Enterolab test cause I think I'm quite able to know now which foods are not working with me. I've done different diets until know like sugar-free, yeast-free, GF... Now I'm trying GF + dairy free but I'm not really sure about eggs ? I need eggs in the Paleo oriented diet I'd like to try. I'm actually doing a lot of muscle devt exercices & I need a lot of proteins !
Moreover, I'm not sure about stopping Rice - Is there anyone who is intolerant to rice ? I had this intolerance mentionned in the belgium tests I've done but I never trusted these results. I'm sure a low carb diet can be really helping, but stop all carbs... I'm not a big fan !
2) What about tobacco ? I'm smoking 10 cigarettes/day... I know it's not good, I just want to know if it increase inflammation - I think it does in CHron's but our condition is different.
3) What about alcool ?(I only drink Vodka or Rhum - not Whisky or beer which is Malt) in my friday/saturday evenings if I go out (not every week).
4) I'm really conscious that even if I do my best, I won't be able to follow the diet everyday - not because I don't want to (cause I just love to cook so I know how to make good recipes with "nothing" - I'm half italian ;) ) but because there is always a Gluten accident that can happen etc. I'm not Celiac, I had a colonoscopy, stool tests, blood test showing nothing about Gluten. I know that LC people react the same to Gluten than Celiac people do. But we have what is called hypersensitivity, and I'm not sure that if we stop eating Gluten for 2 months and then eat pasta, the inflammation will start from the beggining like with celiac disease... ?
Thx again !
Max
Max,
Unfortunately, IBS does not exist. "IBS" is a fictitious disease created by GI specialists so that they wouldn't have to continue to tell patients, "I don't have any idea what's wrong with you". It sounds so much more professional to say, "You have IBS". "IBS" is nothing more than undiagnosed celiac disease, or MC, or some other IBD. Sometimes this occurs because the disease is in the early stages, so that it does not yet meet all the diagnostic markers, and many times it happens simply because the doctor doesn't know what he or she is doing, and they fail to look for a certain disease. For example, it's impossible to diagnose MC unless a doctor specifically looks for it, because if biopsies are not taken, and then examined under a microscope by a pathologist who is properly trained to identify the markers of MC, then MC cannot be diagnosed.
And did you know that the average time that passes from a patient's first symptoms, until an official diagnosis of celiac disease is made (in this country) is 9.7 years? In most cases, for 9.7 years the patient is told that they have "IBS". Then one day (after the disease fully develops) a doctor will again do some tests, and tell the patient, "You have celiac disease". Well duh! They have obviously had undiagnosed celiac disease for all those years, it didn't just suddenly appear from out of nowhere.
The same thing happens with MC. Most of us have been told at one time or another that we have IBS.
And we all need protein. Not only because we need it for an active lifestyle, but because additional protein is necessary to help heal the intestines. But eating foods that generate more inflammation is not the way to heal the gut — eating foods that cause additional inflammation just guarantees that we will never be able to reach remission.
At first, each and every one of us are extremely reluctant to admit that this disease is now a permanent part of our life, and because of it our lifestyle will forever be different from the path that we once followed. But this is a serious disease, and we have to take it seriously, and treat it seriously, or it will dominate our behavior (and most importantly, our enjoyment of life) for the rest of our life. You might find it helpful to read this post (if you haven't already read it):
How Will This Disease Affect My Life In The Long-Term?
Max, you are just like every one of us here. We didn't ask for this disease, and we don't deserve to have this disease, but we have it, for better or for worse. And that cannot be undone. Our goal here is to learn to live with it, so that we can enjoy life just as much as we ever did (actually our goal is to enjoy life more than ever). If we don't control the disease, it will control our life, forever.
Currently, the only way that we can effectively and reliably control the disease is by carefully controlling our diet (at all times). It's your life, and you are in complete control of your destiny. Tomorrow can either be the first day of your recovery as you begin the transition into your new and improved life, or it can be a continuation of what you are now experiencing. You have to decide which of your priorities in life are the most important. Are a few moments of dietary indiscretion on the weekends worth the suffering and inconvenience that it can cause all week long? And are the risks you take with your weekend meals worth placing your career in jeopardy?
Tex
Unfortunately, IBS does not exist. "IBS" is a fictitious disease created by GI specialists so that they wouldn't have to continue to tell patients, "I don't have any idea what's wrong with you". It sounds so much more professional to say, "You have IBS". "IBS" is nothing more than undiagnosed celiac disease, or MC, or some other IBD. Sometimes this occurs because the disease is in the early stages, so that it does not yet meet all the diagnostic markers, and many times it happens simply because the doctor doesn't know what he or she is doing, and they fail to look for a certain disease. For example, it's impossible to diagnose MC unless a doctor specifically looks for it, because if biopsies are not taken, and then examined under a microscope by a pathologist who is properly trained to identify the markers of MC, then MC cannot be diagnosed.
And did you know that the average time that passes from a patient's first symptoms, until an official diagnosis of celiac disease is made (in this country) is 9.7 years? In most cases, for 9.7 years the patient is told that they have "IBS". Then one day (after the disease fully develops) a doctor will again do some tests, and tell the patient, "You have celiac disease". Well duh! They have obviously had undiagnosed celiac disease for all those years, it didn't just suddenly appear from out of nowhere.
The same thing happens with MC. Most of us have been told at one time or another that we have IBS.
Trust me, we all think that we are capable of knowing which foods cause problems for us. And we are all very surprised when we get our test results back and see that 1 or more of the foods that we "know" are safe for us, is/are the main reason why we continue to be sick.Max wrote:1) I'll see if I'll do an Enterolab test cause I think I'm quite able to know now which foods are not working with me. I've done different diets until know like sugar-free, yeast-free, GF... Now I'm trying GF + dairy free but I'm not really sure about eggs ? I need eggs in the Paleo oriented diet I'd like to try. I'm actually doing a lot of muscle devt exercices & I need a lot of proteins !
Moreover, I'm not sure about stopping Rice - Is there anyone who is intolerant to rice ? I had this intolerance mentionned in the belgium tests I've done but I never trusted these results. I'm sure a low carb diet can be really helping, but stop all carbs... I'm not a big fan !
And we all need protein. Not only because we need it for an active lifestyle, but because additional protein is necessary to help heal the intestines. But eating foods that generate more inflammation is not the way to heal the gut — eating foods that cause additional inflammation just guarantees that we will never be able to reach remission.
You are correct that smoking is contraindicated for Crohn's, but though most doctors are reluctant to admit it, nicotine actually prevents and/or treats ulcerative colitis. There is no research about nicotine available for MC, but in our experience here on the board, we have found that quitting a long-term smoking habit can trigger MC (because of the stress), and this is documented in the medical journals, but smoking (or resuming smoking) does not seem to help to relieve the symptoms of MC. IOW, for someone who has MC, nicotine will not help, but since any source of stress can make the symptoms worse, stopping smoking can make the symptoms worse, or cause a relapse for someone in remission.Max wrote:2) What about tobacco ? I'm smoking 10 cigarettes/day... I know it's not good, I just want to know if it increase inflammation - I think it does in CHron's but our condition is different.
Alcohol in excess can cause a leaky gut problem, and alcohol can make a Candida overgrowth problem worse, but in general, in moderation, alcohol is safe for someone who has MC. Beware of certain blended drinks, where distilled liquors are blended back with undistilled products that contain gluten. Vodka, rum, gin, burbon, tequila, etc., are safe for most of us. Note however, that for those of us who have mast cell activation problems, alcohol can cause a histamine reaction.Max wrote:3) What about alcool ?(I only drink Vodka or Rhum - not Whisky or beer which is Malt) in my friday/saturday evenings if I go out (not every week).
The gluten-sensitive problem that we have (associated with MC) is not just a temporary inconvenience. It is for life. When the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also almost always triggered.Max wrote:4) I'm really conscious that even if I do my best, I won't be able to follow the diet everyday - not because I don't want to (cause I just love to cook so I know how to make good recipes with "nothing" - I'm half italian ;) ) but because there is always a Gluten accident that can happen etc. I'm not Celiac, I had a colonoscopy, stool tests, blood test showing nothing about Gluten. I know that LC people react the same to Gluten than Celiac people do. But we have what is called hypersensitivity, and I'm not sure that if we stop eating Gluten for 2 months and then eat pasta, the inflammation will start from the beggining like with celiac disease... ?
At first, each and every one of us are extremely reluctant to admit that this disease is now a permanent part of our life, and because of it our lifestyle will forever be different from the path that we once followed. But this is a serious disease, and we have to take it seriously, and treat it seriously, or it will dominate our behavior (and most importantly, our enjoyment of life) for the rest of our life. You might find it helpful to read this post (if you haven't already read it):
How Will This Disease Affect My Life In The Long-Term?
Max, you are just like every one of us here. We didn't ask for this disease, and we don't deserve to have this disease, but we have it, for better or for worse. And that cannot be undone. Our goal here is to learn to live with it, so that we can enjoy life just as much as we ever did (actually our goal is to enjoy life more than ever). If we don't control the disease, it will control our life, forever.
Currently, the only way that we can effectively and reliably control the disease is by carefully controlling our diet (at all times). It's your life, and you are in complete control of your destiny. Tomorrow can either be the first day of your recovery as you begin the transition into your new and improved life, or it can be a continuation of what you are now experiencing. You have to decide which of your priorities in life are the most important. Are a few moments of dietary indiscretion on the weekends worth the suffering and inconvenience that it can cause all week long? And are the risks you take with your weekend meals worth placing your career in jeopardy?
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.
Dear Tex,
Thanks for your answer.
For sure by now it's not easy to admit that I will have to deal with it all my life. I have to & I need to. Hope new medecines will pop up one day...
I totaly understand what you mean saying IBS "doesn't exist" as far as this is what has been told to me by the first GI doctors I've had when I was 21... Everyone was saying "this is just in your head, you're too stressed !", even people around me, this is why I kept everything to myself for nearly 6 years...
But the truth is that sometimes I had my worse episodes when I was in holidays in very quiet places (not sunny cause sun tends to decrease my condition when I expose my self a lot - D vitamin again ?).
I did read about what you wrote on Tobacco so it confirms what I thought. Concerning Alcohol, sometimes it could be in excess but never from "wrong" alcohol.
I'll meet who is considered as "the best GI doctor in Paris" thanks to my actual one. He is very "aware" of microscopic colitis. If I get some news for you guys, I won't hesitate to write a post to help.
Thx again
Best,
Max
Thanks for your answer.
For sure by now it's not easy to admit that I will have to deal with it all my life. I have to & I need to. Hope new medecines will pop up one day...
I totaly understand what you mean saying IBS "doesn't exist" as far as this is what has been told to me by the first GI doctors I've had when I was 21... Everyone was saying "this is just in your head, you're too stressed !", even people around me, this is why I kept everything to myself for nearly 6 years...
But the truth is that sometimes I had my worse episodes when I was in holidays in very quiet places (not sunny cause sun tends to decrease my condition when I expose my self a lot - D vitamin again ?).
I did read about what you wrote on Tobacco so it confirms what I thought. Concerning Alcohol, sometimes it could be in excess but never from "wrong" alcohol.
I'll meet who is considered as "the best GI doctor in Paris" thanks to my actual one. He is very "aware" of microscopic colitis. If I get some news for you guys, I won't hesitate to write a post to help.
Thx again
Best,
Max
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Max
the link with things like Alcohol, Gluten, Histamines etc, they all cause inflammation.
For someone with MC, inflammation reactions are bigger, more damaging and take longer to calm down.
while ever there is inflammation, digestion and nutrition absorption is affected.
Having one drink of a gluten free alcohol may not cause any noticeable symptoms. If you had a stressful day at work, have alcohol and some high histamine ingredients in your meal, then you are most likely going to have symptoms.
As we age, our ability to heal reduces. The longer that someone has had moderate to chronic symptoms, the longer it takes for the gut to heal, (and that only really occurs once someone is on the right eating plan), it can take 1 - 3 years (and for some longer)
the sooner you can accept the diagnosis, embrace the changes, the sooner that good healing can occur and you can optimise your wellness for the next 40 years!
the link with things like Alcohol, Gluten, Histamines etc, they all cause inflammation.
For someone with MC, inflammation reactions are bigger, more damaging and take longer to calm down.
while ever there is inflammation, digestion and nutrition absorption is affected.
Having one drink of a gluten free alcohol may not cause any noticeable symptoms. If you had a stressful day at work, have alcohol and some high histamine ingredients in your meal, then you are most likely going to have symptoms.
As we age, our ability to heal reduces. The longer that someone has had moderate to chronic symptoms, the longer it takes for the gut to heal, (and that only really occurs once someone is on the right eating plan), it can take 1 - 3 years (and for some longer)
the sooner you can accept the diagnosis, embrace the changes, the sooner that good healing can occur and you can optimise your wellness for the next 40 years!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama