Hello all-
I'm a brand newbie. I've had GI issues for almost 40 years now, since I was a teenager. I have received diagnoses of non-ulcerative dyspepsia, IBS, and now MC. At the end of May, I had what I thought was a bug (I had a fever of 102F+ and diarrhea). The fever went away after 2-3 days. But the diarrhea only stopped with Imodium and it came back again and again for over 10 weeks. After two weeks I went to my doctor and had loads of tests, including a colonoscopy. Everything was normal, but there were two possibilities out of the colonoscopy: MC and CD. The Celiac test (including genetic markers) was negative. I was on the BRAT diet for about two months, and went on 6-food elimination diet for two weeks. I felt exhausted all the time and couldn't go anywhere. I used up all my time off from work that I had earned for the year and the max I could borrow.
I am very sensitive to medications and artificial anything, and have had a bad reaction to 75-80% of all meds that I have ever tried, so I try to avoid taking new medications. If there is a side effect that happened to a half of one percent of people in the trial, that will be what I experience. For example, PPIs cause severe pain, blood in stool and projectile vomiting. This round, the doctors insisted that I take Apriso (mesalamine) or they would not sign the papers I needed for my medical leave from work. So I took it, but within less than an hour after taking it, I was in increased pain and had increased churning with each dose, likely due in part to its being made with Aspartame -- and then with the fourth dose I vomited. I did not take any more. I do not want to go on Entocort, which is what I know they would subject me to if I went back to the doctor, and charge me for the privilege. So I won't call the doctor unless things get really dire. I want to control this condition through diet and natural means. I find meditation helpful; medication, not so much. Next week I am going to see a naturopath.
My traditional doctors gave me only diagnoses, with no guidance or other information. Everything I've learned has been through my own research or trial and error. My father is a biomedical engineer and my mother is a geneticist, so I have a pretty good understanding of medical conditions and terms, and a healthy skepticism of doctors. I have an even greater skepticism of pharmaceuticals. I find it incredibly frustrating that most of the physicians that I have had to deal with have been patronizing, unwilling to listen or answer reasonable questions, and at times even downright insulting. I've been poked, prodded and tested. Everything comes back "normal", but this is SO NOT normal. I won't accept that.
In my early research on the topic, I found information on a medical site that fiber is generally indicated as a first treatment for MC, so I started taking organic acacia fiber, and it is helping (I know that psyllium fiber would not). It has helped more than going GF, which did not make me feel any different physically. I was having some success sticking with mostly whole foods as close to what is found in nature as possible, mostly soluble fiber foods, lean white meat chicken, fish, nuts, and tofu (I've been mostly DF for years, though I could tolerate small amounts with Lactaid until recently). Then one week, when things seemed pretty stable, I decided to branch out and have some pork. A couple of days later while I was out on an errand at whole foods about two miles from home, I suddenly felt intense abdominal pain just this side of childbirth as I was checking out. Somehow I made it to the car, and almost made it home before emptying. I also learned firsthand what "sweating bullets" means. Luckily I had sat on a heavy plastic bag so my car was spared, but I had to throw away my pants. I was supposed to go on a trip that weekend, but I stayed home instead. Thus ended my summer.
I don't much care what I need to eat to be healthy. I will follow whatever diet works to resolve my symptoms, although I vastly prefer fruits, veggies and nuts to meat. Beef and pork make me feel much, much worse than foods with gluten do. I think I know what my safe zone of foods is, and will stick within it and keep tracking my diet, until I get test results that steer me elsewhere. And I'll keep Imodium with me at all times.
How I Spent My Summer Vacation
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
How I Spent My Summer Vacation
Courage is the price that life exacts for granting peace; the soul that knows it not, knows no release from little things. - Amelia Earhart
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to our group
(sympathies that you had to find us)
you mention good results with taking fibre, this reiterates what I am about to write in regards to what diet will resolve your symptoms.
In MC world there is no one way that is guaranteed to work, what works is summed up by 'there is no right way or wrong way, there is your way'
There are lots of common triggers amongst the group, albeit in my case I react worse to soy than gluten. Others can not handle a milliounce of gluten, others can not handle a hint of dairy. For many, fibre would be a major trigger, there are others that Psyllium has worked The key to wellness is eliminating your major triggers, minimise/avoid your minor triggers as much as possible, stick to an eating plan and lifestyle plan that works for you, and is sustainable, fix any nutrient/mineral deficiencies and give your body the time and nurturing it needs to heal
Please read the subject areas, posts aimed at new people, the flow on questions and discussions in these areas will maybe answer quite a few of your questions.
As you will read in the success stories area, and even some recent posts here in the Main Message Board, it takes people a while (3-9 months) to figure out what works for them, and once they do, improvements and wellness happen.
Histamine / Mast Cell is a common topic that is discussed as it is a common issue for MC'ers, when you have a spare 10 mins of reading time, spend some time in this area of the forum.
With your mothers background, another topic that may be of interest is MTHFR/Pyrrole, this would explain your reaction to medications.
most of all, take your time to digest the information here (pun intended) this is more than a group, it is a family, full of caring, wise, knowledgeable, supportive friends that want you to be well. do a bit of reading and feel free to ask questions.
hope this helps
Healing Hugs
PS I carried spare undies and work pants in my car for 2 years post Dx until i got a good MC management plan in place
(sympathies that you had to find us)
you mention good results with taking fibre, this reiterates what I am about to write in regards to what diet will resolve your symptoms.
In MC world there is no one way that is guaranteed to work, what works is summed up by 'there is no right way or wrong way, there is your way'
There are lots of common triggers amongst the group, albeit in my case I react worse to soy than gluten. Others can not handle a milliounce of gluten, others can not handle a hint of dairy. For many, fibre would be a major trigger, there are others that Psyllium has worked The key to wellness is eliminating your major triggers, minimise/avoid your minor triggers as much as possible, stick to an eating plan and lifestyle plan that works for you, and is sustainable, fix any nutrient/mineral deficiencies and give your body the time and nurturing it needs to heal
Please read the subject areas, posts aimed at new people, the flow on questions and discussions in these areas will maybe answer quite a few of your questions.
As you will read in the success stories area, and even some recent posts here in the Main Message Board, it takes people a while (3-9 months) to figure out what works for them, and once they do, improvements and wellness happen.
Histamine / Mast Cell is a common topic that is discussed as it is a common issue for MC'ers, when you have a spare 10 mins of reading time, spend some time in this area of the forum.
With your mothers background, another topic that may be of interest is MTHFR/Pyrrole, this would explain your reaction to medications.
most of all, take your time to digest the information here (pun intended) this is more than a group, it is a family, full of caring, wise, knowledgeable, supportive friends that want you to be well. do a bit of reading and feel free to ask questions.
hope this helps
Healing Hugs
PS I carried spare undies and work pants in my car for 2 years post Dx until i got a good MC management plan in place
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I will look into these topics. I feel encouraged and empowered already - so glad I found this site. I've been devouring information and so far, have had no bad reaction.
Thank you for the pointers and support, Gabes
Thank you for the pointers and support, Gabes
Courage is the price that life exacts for granting peace; the soul that knows it not, knows no release from little things. - Amelia Earhart
Hi,
Welcome to our internet family. Your story is similar to many that we see here, and yet it has some unusual twists. You seem to have significant issues that are driven either by mast cell activation disorder (MCAD) or by IgE-based reactions. But the IgE reactions are occurring in your digestive tract (rather than in your respiratory tract or your skin (as would be the case with typical IgE-based reactions). That implies that they are almost surely associated with your MC (rather than being a separate event).
MC typically involves IgA-based reactions that results in the production of IgA antibodies against certain foods (in the intestines, though they can occur in other parts of the GI tract), but we are discovering that it is very common for many of us to also have IgE-based reactions in our intestines (something that most GI docs and most allergists know virtually nothing about). IgE antibodies result in mast cell degranulation that involves the dumping of histamine, cytokines, and various other pro-inflammatory agents. In contrast to the relatively slow-acting IgA reactions (which evolve over hours or days), IgE reactions result in much faster reactions (typically 10 to 20 minutes after exposure). Both types of reactions can result in D and other common MC symptoms.
It will be virtually an impossible task to find a doctor who is capable of understanding (or trained to understand) what is happening within your GI tract to cause all those symptoms.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Your story is similar to many that we see here, and yet it has some unusual twists. You seem to have significant issues that are driven either by mast cell activation disorder (MCAD) or by IgE-based reactions. But the IgE reactions are occurring in your digestive tract (rather than in your respiratory tract or your skin (as would be the case with typical IgE-based reactions). That implies that they are almost surely associated with your MC (rather than being a separate event).
MC typically involves IgA-based reactions that results in the production of IgA antibodies against certain foods (in the intestines, though they can occur in other parts of the GI tract), but we are discovering that it is very common for many of us to also have IgE-based reactions in our intestines (something that most GI docs and most allergists know virtually nothing about). IgE antibodies result in mast cell degranulation that involves the dumping of histamine, cytokines, and various other pro-inflammatory agents. In contrast to the relatively slow-acting IgA reactions (which evolve over hours or days), IgE reactions result in much faster reactions (typically 10 to 20 minutes after exposure). Both types of reactions can result in D and other common MC symptoms.
It will be virtually an impossible task to find a doctor who is capable of understanding (or trained to understand) what is happening within your GI tract to cause all those symptoms.
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.
Thank you for the pointers, Tex. I have so much to learn! Do you have any recommendations for books or other sources on these topics? Are there tests for these antibodies?
As for finding a doctor, I have to believe that a motivated, intelligent human with medical training could be capable of understanding what is going on... I have to be cautiously optimistic. Operative word is "motivated". I would gladly see one who is receptive to alternative theories and individuality of treatment, and doesn't just want to write a prescription and make me go away. Someone who could work with me and learn with me. It doesn't seem like it should be such a tall order, but I haven't found one yet. Is there a master list of recommended doctors by state/region?
Whether or not I can find such a doctor, I am determined to find what works best for me, and to control my symptoms via diet vs. medication.
Also of note: I have an exceptionally keen sense of smell -- I can detect gas leaks that others can't, and I once smelled an electrical burning odor at work two days before an electrical fire broke out in a piece of electrical equipment. This keen sense of smell is clearly useful for safety, including determining whether or not food is spoiled, but not so great with strong chemical smells (paint fumes, paving tar, etc), strong perfumes/colognes, skunks, etc. I've read that a keen sense of smell correlates to increased nausea, so I suspect that this may be related to my GI issues somehow. I also experience anxiety or stress as a knot in my gut and clenching of my jaw. Mindfulness seems to help with these.
As for finding a doctor, I have to believe that a motivated, intelligent human with medical training could be capable of understanding what is going on... I have to be cautiously optimistic. Operative word is "motivated". I would gladly see one who is receptive to alternative theories and individuality of treatment, and doesn't just want to write a prescription and make me go away. Someone who could work with me and learn with me. It doesn't seem like it should be such a tall order, but I haven't found one yet. Is there a master list of recommended doctors by state/region?
Whether or not I can find such a doctor, I am determined to find what works best for me, and to control my symptoms via diet vs. medication.
Also of note: I have an exceptionally keen sense of smell -- I can detect gas leaks that others can't, and I once smelled an electrical burning odor at work two days before an electrical fire broke out in a piece of electrical equipment. This keen sense of smell is clearly useful for safety, including determining whether or not food is spoiled, but not so great with strong chemical smells (paint fumes, paving tar, etc), strong perfumes/colognes, skunks, etc. I've read that a keen sense of smell correlates to increased nausea, so I suspect that this may be related to my GI issues somehow. I also experience anxiety or stress as a knot in my gut and clenching of my jaw. Mindfulness seems to help with these.
Courage is the price that life exacts for granting peace; the soul that knows it not, knows no release from little things. - Amelia Earhart
I found the list of docs. I see that one doc listed as good for treating MC is actually in the practice with the doctors I have seen! I will have to see whether I can consult with her. There are a couple of MAST Cell Specialists at B&W in Boston, also. I'm going to see a naturopath close to home next week, and I was given the name of a naturopath in the New Haven area (about an hour or more away) who is also supposed to be good. I haven't had the energy to travel very far, but at least these are possibilities.
Support is so key -- glad I found this forum!
Support is so key -- glad I found this forum!
Courage is the price that life exacts for granting peace; the soul that knows it not, knows no release from little things. - Amelia Earhart
Have you already read the short articles at the following links? These relate specifically to mast cell issues associated with MC:
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?
This is a good article, written by one of the doctors on the list. It should answer your questions about tests for the disorder:
A concise, practical guide to diagnostic assessment for mast cell activation disease
You might find this helpful, also:
Things That Plague Us: Mast Cell Activation and Histamine
It's always best to be optimistic, but most MDs tend to be very skeptical about venturing very far away from their medical training. If a concept hasn't been proven by a controlled, random trial and published in a peer-reviewed, prestigious medical journal, then it usually isn't even on their radar, unfortunately.
Tex
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?
This is a good article, written by one of the doctors on the list. It should answer your questions about tests for the disorder:
A concise, practical guide to diagnostic assessment for mast cell activation disease
You might find this helpful, also:
Things That Plague Us: Mast Cell Activation and Histamine
It's always best to be optimistic, but most MDs tend to be very skeptical about venturing very far away from their medical training. If a concept hasn't been proven by a controlled, random trial and published in a peer-reviewed, prestigious medical journal, then it usually isn't even on their radar, unfortunately.
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 had not read these yet. Thank you for all the info.
It has been a long work week, and I have one more day yet. For me these types of articles require more concentration than I am capable of right now. I will have to read these articles more carefully over the weekend, when I can focus better to be sure I understand.
I know what you mean about MDs, but I have known some (unfortunately, no gastroenterologists -- yet) who were more open to alternative approaches. They were also good at explaining things -- with my MC diagnosis I got nothing but "these are the medication options". The doctor and NP seemed almost indignant that I had the nerve to ask questions. Today I went to see a nutritionist, who is passionate about helping people with GI issues/disorders. She seemed very sympathetic and switched on, so I'm hopeful that she will have some good guidance/suggestions also.
I'll do some more poking around the site for some of the other topics of interest to me now.
Thanks again!
It has been a long work week, and I have one more day yet. For me these types of articles require more concentration than I am capable of right now. I will have to read these articles more carefully over the weekend, when I can focus better to be sure I understand.
I know what you mean about MDs, but I have known some (unfortunately, no gastroenterologists -- yet) who were more open to alternative approaches. They were also good at explaining things -- with my MC diagnosis I got nothing but "these are the medication options". The doctor and NP seemed almost indignant that I had the nerve to ask questions. Today I went to see a nutritionist, who is passionate about helping people with GI issues/disorders. She seemed very sympathetic and switched on, so I'm hopeful that she will have some good guidance/suggestions also.
I'll do some more poking around the site for some of the other topics of interest to me now.
Thanks again!
Courage is the price that life exacts for granting peace; the soul that knows it not, knows no release from little things. - Amelia Earhart
Welcome!
Welcome to the group!!! I am SO with you on the frustration of dealing with doctors, who only offer diagnosis and no guidance. I have a crazy sense of smell too, combined with an incredibly sensitive gag reflex. Awesome combo!
Anyway, just wanted to say welcome!
Laura
Anyway, just wanted to say welcome!
Laura
Let me Google that for you.
Welcome!
You are in good hands here with these angels. Swift healing!
I too have bad reactions to pharmaceuticals and avoid them as much as possible. 5 days in to Budesonide, I had C, tight chest, cough, dry mouth, a couple of other things I can't remember right now... No thank you! and weaned myself off.
Summer
You are in good hands here with these angels. Swift healing!
I too have bad reactions to pharmaceuticals and avoid them as much as possible. 5 days in to Budesonide, I had C, tight chest, cough, dry mouth, a couple of other things I can't remember right now... No thank you! and weaned myself off.
Summer
Thanks, Laura & Summer for the warm welcome and good wishes. I'm glad to be here, and I'm learning a lot.
I've had a pretty busy weekend out & about - although I do get nervous being out, I hate letting this disease control my life and dictate my actions. I stopped at Trader Joe's yesterday and picked up some of their brown rice & quinoa GF pasta. It was very good - with sauce, even my husband (who can/will eat just about anything) could hardly tell the difference. Prior to that, the best GF alternative pasta I found was an amaranth & rice variety from Whole Foods, but the TJ pasta is less than a third the cost. With the quinoa, it is also high in protein. I also picked up some Udi's bread there, on people's recommendations on the forum - wow, that really is great stuff!
I seem to have found a very limited diet that mostly works for me, and plan to stick with it in the short term until I have more info about my specific triggers. I ordered Enterolab tests and will adjust my diet once those results come back. The other thing I still seem to be struggling with is fatigue. I cannot function at nearly the level of activity that I used to. I'm probably at about 60-65%, and it has been slow getting to this point.
I am fortunate and blessed to have a supportive family and friends, as well as boss & co-workers (though I share much less information with them).
All in all, I think (and hope) things are moving in the right direction. Time will tell.
I've had a pretty busy weekend out & about - although I do get nervous being out, I hate letting this disease control my life and dictate my actions. I stopped at Trader Joe's yesterday and picked up some of their brown rice & quinoa GF pasta. It was very good - with sauce, even my husband (who can/will eat just about anything) could hardly tell the difference. Prior to that, the best GF alternative pasta I found was an amaranth & rice variety from Whole Foods, but the TJ pasta is less than a third the cost. With the quinoa, it is also high in protein. I also picked up some Udi's bread there, on people's recommendations on the forum - wow, that really is great stuff!
I seem to have found a very limited diet that mostly works for me, and plan to stick with it in the short term until I have more info about my specific triggers. I ordered Enterolab tests and will adjust my diet once those results come back. The other thing I still seem to be struggling with is fatigue. I cannot function at nearly the level of activity that I used to. I'm probably at about 60-65%, and it has been slow getting to this point.
I am fortunate and blessed to have a supportive family and friends, as well as boss & co-workers (though I share much less information with them).
All in all, I think (and hope) things are moving in the right direction. Time will tell.
Courage is the price that life exacts for granting peace; the soul that knows it not, knows no release from little things. - Amelia Earhart