Do I belong here??
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Do I belong here??
Greetings to all from Sunny California! I've been on a six-year journey across potty-land and have ended up here. The question is: Am I in the right spot? The medical folks don't know but I'm betting the smart patients here do. I started off with noticeable reactions to eating gluten about six years ago. I have another autoimmune disease, Sjogren's syndrome, and celiac disease is a risk factor so it was suggested that I get tested. My bloodwork for antibodies was negative but I was confirmed as "gluten sensitive" by Enterolabs. My increasing sensitivity made it imperative that I avoid gluten and I never pursued the biopsy confirmation. I became increasingly sensitive to the point where I've been unable to even eat in restaurants or friends' houses for the last year. When I get glutinized, my symptoms are extreme fatigue, chills, shakes, night sweats, the big D and a tummy that feels like it's been scrubbed down with Brillo. I've eliminated food allergies as a cause. Recently I had the celiac gene test and I don't have the gene so I suppose there's only a very small chance that I have celiac disease. My gastroenterologist did a colonscopy/endoscopy with ONE biopsy from each of the esophagus, small bowel, stomach and colon. Everything looked normal. I saw him for a follow-up last week and told him I thought that the biopsies missed what I have: microscopic colitis or possibly collagenous sprue. Or maybe both. And he agreed with me; these are the only conditions which seem to explain all my symptoms. Oh and did I mention the gas? Until recently, I only had GI symptoms when I got gluten but about a month ago I began having daily watery D and tons of very noxious gas. And one other small thing: long term NSAID use (I quit a month ago). I'm betting this sounds very familiar to everyone. But what about the symptoms with gluten? Does everyone else here have those extreme reactions? Can other people eat at restaurants? Is anyone as sensitive? So I'm wondering if I belong to this group or should I try to go attach myself to somewhere else? Any insight would be very welcome! Thanks, Darby.
Hi Darby,
Welcome to our internet family. Well, I don't even own a white coat, but I'd bet a gluten-free cookie that you have microscopic colitis. You certainly have all the symptoms, and the endoscopy exams ruled out every other possibility, (the other IBDs would have shown visible lesions, if you had one of them). I had all the symptoms you named, and more, (I also had bad migraines and arthritis along with everything else).
Having another autoimmune disease is also a clue, since most of us here are in the same boat, (MC tends to go with other autoimmune diseases). Yes, we learn how to eat away from home, (by being extremely careful), and yes, most of us are extremely sensitive to gluten, (most of us react to even trace amounts, such as a tiny crumb of bread that accidentally gets into our food). Most of us are also sensitive to casein, and about half of us are sensitive to soy. A few are sensitive to various other foods.
Most of us don't get the chills, shakes, and night sweats, (not from MC, anyway), but some of us do, (including myself). Quite a few of us here can trace our MC back to the use of NSAIDs, but there are many other causes, too.
Anyway, IMO, if you want a diagnosis, you need to find a GI doc who's not afraid to take biopsies, (plenty of them, and from the right places). Or, you can treat yourself, by tracking down all your intolerances, and learning to read labels very, very carefully.
Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
Welcome to our internet family. Well, I don't even own a white coat, but I'd bet a gluten-free cookie that you have microscopic colitis. You certainly have all the symptoms, and the endoscopy exams ruled out every other possibility, (the other IBDs would have shown visible lesions, if you had one of them). I had all the symptoms you named, and more, (I also had bad migraines and arthritis along with everything else).
I assume you're referring to allergies by the classic definition, (histamine-based reactions), rather than "intolerances", which are due to autoimmune reactions, because if you can't eat out without major problems, you're certainly reacting to something.Darby wrote:I've eliminated food allergies as a cause.
Having another autoimmune disease is also a clue, since most of us here are in the same boat, (MC tends to go with other autoimmune diseases). Yes, we learn how to eat away from home, (by being extremely careful), and yes, most of us are extremely sensitive to gluten, (most of us react to even trace amounts, such as a tiny crumb of bread that accidentally gets into our food). Most of us are also sensitive to casein, and about half of us are sensitive to soy. A few are sensitive to various other foods.
Most of us don't get the chills, shakes, and night sweats, (not from MC, anyway), but some of us do, (including myself). Quite a few of us here can trace our MC back to the use of NSAIDs, but there are many other causes, too.
Anyway, IMO, if you want a diagnosis, you need to find a GI doc who's not afraid to take biopsies, (plenty of them, and from the right places). Or, you can treat yourself, by tracking down all your intolerances, and learning to read labels very, very carefully.
Again, welcome aboard, and please feel free to ask anything that comes to mind.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
hi there Darby
greetings from Brisbane Australia
The various posts on this forum will confirm that Chronic D is the main symptom, gas, aches and pains, gerd and various other symptoms occur as well.
the one thing with this site (this family) is you dont need a medical certificate to join! if you are having digestion issues, then it is a place to research various treatments and gain understanding into what your body is doing (or not doing!)
a key thing with MC/Crohns and even IBS, everyone is different, triggers can be different, intensity of reaction can be different and what diet/meds/natural therapy works as treatment is different. There is no right way or wrong way - there is your way.
to answer your questions:
if we are inflammed or in flare mode then there is an intensity to the reaction of triggers ie Chronic D within 20 mins
if the item is a mild trigger and we are not too inflammed then the reaction can be more mild (gas or softer BM within 24 hours)
eating out - has been an adventure for most of us depending on our intolerances. the more intolerances the individual has then the more difficult eating out can be. I have had good experiences and bad experiences.
eating with friends, mostly I take my own foods with me. There are elements of gluten hidden in a variety of foods (ie caramel colouring in balsomic vinegar has gluten in it) learning what are 'safe ingredients' and what foods have evil gluten in it takes time. you have to double check every item.
some of my friends follow a gluten free diet so i am happy to eat at their place as i can trust the meal they have prepared.
The other thing to note is that most of us have multiple intolerances so eleminating gluten might only be the start.
i was diagnosed in Dec 09, I am still recovering from the major flare, transitioning my brain and tastebuds to the new eating plan.
it takes time and can be overwhelming at times, be assured you have a found a fantastic place with some wonderful people that can lend a hand
hope this helps! take care
greetings from Brisbane Australia
The various posts on this forum will confirm that Chronic D is the main symptom, gas, aches and pains, gerd and various other symptoms occur as well.
the one thing with this site (this family) is you dont need a medical certificate to join! if you are having digestion issues, then it is a place to research various treatments and gain understanding into what your body is doing (or not doing!)
a key thing with MC/Crohns and even IBS, everyone is different, triggers can be different, intensity of reaction can be different and what diet/meds/natural therapy works as treatment is different. There is no right way or wrong way - there is your way.
to answer your questions:
if we are inflammed or in flare mode then there is an intensity to the reaction of triggers ie Chronic D within 20 mins
if the item is a mild trigger and we are not too inflammed then the reaction can be more mild (gas or softer BM within 24 hours)
eating out - has been an adventure for most of us depending on our intolerances. the more intolerances the individual has then the more difficult eating out can be. I have had good experiences and bad experiences.
eating with friends, mostly I take my own foods with me. There are elements of gluten hidden in a variety of foods (ie caramel colouring in balsomic vinegar has gluten in it) learning what are 'safe ingredients' and what foods have evil gluten in it takes time. you have to double check every item.
some of my friends follow a gluten free diet so i am happy to eat at their place as i can trust the meal they have prepared.
The other thing to note is that most of us have multiple intolerances so eleminating gluten might only be the start.
i was diagnosed in Dec 09, I am still recovering from the major flare, transitioning my brain and tastebuds to the new eating plan.
it takes time and can be overwhelming at times, be assured you have a found a fantastic place with some wonderful people that can lend a hand
hope this helps! 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
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Welcome to the family--Darby------and I think U will fit in perfectly---- 
Not that I am *happy* U are suffering but --once U get answers to anything U ask---and things start to sort itself ---U will be a happy person--oh---and *Learning* so many different whys and where-fores--will be amazing----
U see I was MC---but YET---I still didnt have some of the issues that MC"ers (here) suffered with--
So to use the old saying----whats good for one might not work for the other~~~~
Wishing U the best of the very best yet to come your way-
Barbara
Not that I am *happy* U are suffering but --once U get answers to anything U ask---and things start to sort itself ---U will be a happy person--oh---and *Learning* so many different whys and where-fores--will be amazing----
U see I was MC---but YET---I still didnt have some of the issues that MC"ers (here) suffered with--
So to use the old saying----whats good for one might not work for the other~~~~
Wishing U the best of the very best yet to come your way-
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Darby welcome from (sometimes sunny) Hong Kong!
Your symptoms seem very familiar to me, including the night sweats that as Tex says may not be related to MC. I have multiple intolerances and like to eat out. I have a few (very few) "tame" restaurants I trust. I tend to go back to those where the chef knows me and I do not have to keep explaining things. Even then it is easy to get "glutened" or "soyed",
All the best and hope we can help you in your journey to better health and lifestyle, Ant
Your symptoms seem very familiar to me, including the night sweats that as Tex says may not be related to MC. I have multiple intolerances and like to eat out. I have a few (very few) "tame" restaurants I trust. I tend to go back to those where the chef knows me and I do not have to keep explaining things. Even then it is easy to get "glutened" or "soyed",
All the best and hope we can help you in your journey to better health and lifestyle, Ant
Hello Darby a warm welcome from a not so sunny and still a bit cold Netherlands. Must be a nightmare having serious symptoms for years and having no idea what it is. Glad you found us. About your questions, how sensitive we are. To be honest I have no idea. I made the relationship gluten and my bowel problems only 8 - 9 months ago and since than I am very careful with eating gluten free. Going out for dinner is something I don't do very often. Only twice since I was dx with MC. One time to a pizzeria (bad experience, I assume parts of the flower of the tough are everywhere there) and other restaurant (no problems). The chills and night sweats I do recognize. I never made the link with gluten. You see from everybody your learn something new here. Actually it explains another strange habit I have developed over the years. I sleep under 3 thin layers, and during the night I put them on and of depending how warm/cold I am. Really again thank you mentioning that here, it makes my day, another strange thing explained. It just never thought of the relationship with gluten.
You are only writing about gluten. Have you ever considered other food sensitivities. I don't mean the regular food allergy tests, but also other enterolab testing on soy, milk, egg and yeast. It is very good possible you are very sensitive to gluten. But could it also be possible other ingredients are causing you problems too? With MC it is quite common to have more food sensitivities (intolerances), most common here are gluten, milk (casein), soy for about half of us and a minor group is also sensitive to egg and yeast. Also corn and nightshades are popular ingredients that some of us can't digest very well. Also be careful with fiber, especially insolvable fiber.
And about your gas, ever considered that lactose could be the cause? With any bowel problem it is very common that you can't digest lactose which can give gas and also D. Until almost 3 years ago, I was a very gassy person. After going lactose free it made a big difference. If it is a problem, you will notice the difference within a day (or maybe 2).
Also about having the no celiac gene, not here but on Dutch celiac message board I have seen very gluten sensitive people with no celiac gene. So you are not the only one!
Harma
You are only writing about gluten. Have you ever considered other food sensitivities. I don't mean the regular food allergy tests, but also other enterolab testing on soy, milk, egg and yeast. It is very good possible you are very sensitive to gluten. But could it also be possible other ingredients are causing you problems too? With MC it is quite common to have more food sensitivities (intolerances), most common here are gluten, milk (casein), soy for about half of us and a minor group is also sensitive to egg and yeast. Also corn and nightshades are popular ingredients that some of us can't digest very well. Also be careful with fiber, especially insolvable fiber.
And about your gas, ever considered that lactose could be the cause? With any bowel problem it is very common that you can't digest lactose which can give gas and also D. Until almost 3 years ago, I was a very gassy person. After going lactose free it made a big difference. If it is a problem, you will notice the difference within a day (or maybe 2).
Also about having the no celiac gene, not here but on Dutch celiac message board I have seen very gluten sensitive people with no celiac gene. So you are not the only one!
Harma
Do I belong here?
Thanks to Tex, Gabes, Barbara, grannyh, ant and Harma for your kind responses to my questions. I'd like to add a couple things. I'm pretty sure that the only things I react to are gluten and oats (like Tex). Vinegar is another possibility as yet unconfirmed. When I say that I can't eat out in a restaurant, what I mean is that I need to eat food only from a totally gluten free kitchen, like mine, or I will likely have a reaction. In fact, I'm SO sensitive that I don't even have to "eat" gluten to have a reaction. I went to a holiday party and ate nothing but I did have a drink. People were eating gluten and talking animatedly and I likely caught some of the gluten on their breath in my glass. I know that there are other people that sensitive on the celiac listserv because I have asked but it is not typical so I was wondering if that level of sensitivity is more common with MC.
The chronic D is something new for me so I'm still trying to get a handle on that. Pepto Bismol, Immodium and diet changes (like eliminating sugar) have all helped. When I saw the doctor last week he put me on a course of Xifaxin for 10 days for my gas (we both think I have bacterial overgrowth which seems to contribute to the D) and that has helped tremendously although I hope it is not temporary. I have some VSL#3 which I am going to resume taking after the 10 days.
I've felt unwell (very fatigued and more D than usual) yesterday and today and wish I knew what it was. I'm used to having a better handle on what's going on than this. The problem is that I have signed up to do some very public speaking for about three hours and my first day is TOMORROW. So I'm a little worried. Could it be the Xifaxin that is bothering me? This is day 8 and all I had was a little nausea for the first 6 days.
Thanks again to all for your help and words of encouragement. One more thing: where do I go to learn more about this (other than here)?
Thanks from Darby
The chronic D is something new for me so I'm still trying to get a handle on that. Pepto Bismol, Immodium and diet changes (like eliminating sugar) have all helped. When I saw the doctor last week he put me on a course of Xifaxin for 10 days for my gas (we both think I have bacterial overgrowth which seems to contribute to the D) and that has helped tremendously although I hope it is not temporary. I have some VSL#3 which I am going to resume taking after the 10 days.
I've felt unwell (very fatigued and more D than usual) yesterday and today and wish I knew what it was. I'm used to having a better handle on what's going on than this. The problem is that I have signed up to do some very public speaking for about three hours and my first day is TOMORROW. So I'm a little worried. Could it be the Xifaxin that is bothering me? This is day 8 and all I had was a little nausea for the first 6 days.
Thanks again to all for your help and words of encouragement. One more thing: where do I go to learn more about this (other than here)?
Thanks from Darby
Do I belong here??
Thanks to Tex, Gabes, Barbara, grannyh, ant and Harma for your kind responses to my questions. I'd like to add a couple things. I'm pretty sure that the only things I react to are gluten and oats (like Tex). Vinegar is another possibility as yet unconfirmed. When I say that I can't eat out in a restaurant, what I mean is that I need to eat food only from a totally gluten free kitchen, like mine, or I will likely have a reaction. In fact, I'm SO sensitive that I don't even have to "eat" gluten to have a reaction. I went to a holiday party and ate nothing but I did have a drink. People were eating gluten and talking animatedly and I likely caught some of the gluten on their breath in my glass. I know that there are other people that sensitive on the celiac listserv because I have asked but it is not typical so I was wondering if that level of sensitivity is more common with MC.
The chronic D is something new for me so I'm still trying to get a handle on that. Pepto Bismol, Immodium and diet changes (like eliminating sugar) have all helped. When I saw the doctor last week he put me on a course of Xifaxin for 10 days for my gas (we both think I have bacterial overgrowth which seems to contribute to the D) and that has helped tremendously although I hope it is not temporary. I have some VSL#3 which I am going to resume taking after the 10 days.
I've felt unwell (very fatigued and more D than usual) yesterday and today and wish I knew what it was. I'm used to having a better handle on what's going on than this. The problem is that I have signed up to do some very public speaking for about three hours and my first day is TOMORROW. So I'm a little worried. Could it be the Xifaxin that is bothering me? This is day 8 and all I had was a little nausea for the first 6 days.
Thanks again to all for your help and words of encouragement. One more thing: where do I go to learn more about this (other than here)?
Thanks from Darby
The chronic D is something new for me so I'm still trying to get a handle on that. Pepto Bismol, Immodium and diet changes (like eliminating sugar) have all helped. When I saw the doctor last week he put me on a course of Xifaxin for 10 days for my gas (we both think I have bacterial overgrowth which seems to contribute to the D) and that has helped tremendously although I hope it is not temporary. I have some VSL#3 which I am going to resume taking after the 10 days.
I've felt unwell (very fatigued and more D than usual) yesterday and today and wish I knew what it was. I'm used to having a better handle on what's going on than this. The problem is that I have signed up to do some very public speaking for about three hours and my first day is TOMORROW. So I'm a little worried. Could it be the Xifaxin that is bothering me? This is day 8 and all I had was a little nausea for the first 6 days.
Thanks again to all for your help and words of encouragement. One more thing: where do I go to learn more about this (other than here)?
Thanks from Darby
I don't know of any other site that can give you the wealth of information that I have found here.. maybe someone can give you some additional sites.
Some of us can eat in a restaurant now... 8 years ago I couldn't leave my house.. and spent most of my days running to the bathroom. I am one who chose the entocort route back to my new normal life. Others have found relief with diet and can eat in restaurants with gluten free menus.
There is no one answer to our illness.. that is what makes it so hard to deal with.. but there is a way back for all of us.. it just takes time and diligence. Easy to say.. hard to do... but it is worth the effort.
grannyh
Some of us can eat in a restaurant now... 8 years ago I couldn't leave my house.. and spent most of my days running to the bathroom. I am one who chose the entocort route back to my new normal life. Others have found relief with diet and can eat in restaurants with gluten free menus.
There is no one answer to our illness.. that is what makes it so hard to deal with.. but there is a way back for all of us.. it just takes time and diligence. Easy to say.. hard to do... but it is worth the effort.
grannyh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Darby
if you peruse the areas of the forum such as news articles of interest etc there is a huge amount of information and links to articles etc
the search function of this site is fantastic (not the google search the pp search up top next to rules) type in the word that you are interested in. you can narrow down the search to only news articles or interest so you dont get the posts re general discussion topics.....
hope this helps, and things improve soon
if you peruse the areas of the forum such as news articles of interest etc there is a huge amount of information and links to articles etc
the search function of this site is fantastic (not the google search the pp search up top next to rules) type in the word that you are interested in. you can narrow down the search to only news articles or interest so you dont get the posts re general discussion topics.....
hope this helps, and things improve soon
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
for non celiac gluten intolerance information go to www.glutenfreeandbeyond.org
Dear Darby--welcome!
Yes, you are definitely in the right place to find tons of information, differing symptoms, treatments and opinions, none of which are discounted and all are accepted. And no question is too embarrassing to ask.
I, too am relatively new to the forum and still awaiting a firm diagnosis, but am reasonably certain it is MC. I can also relate to the sweats, but attributed them to menopause with no thought of MC. Also have had migraines all my life and again, never made a connection--maybe yes, maybe no.
As many have said it very well before, it is an individual journey to find what works best for you--we are all different. For example, I tried GF for quite some time and couldn't tell if it made a difference or not. Am now back on gluten so the Dr. can do a blood test. Since going back to "normal" eating still have not noticed a difference. Am guessing I am possibly one that is not sensitive to foods in particular as I can eat one thing one day with no problem at all and the exact same thing another and have an issue. So there you go!
Good luck on your journey. Try any of the advice that you think may fit and hopefully we will all get back to as normal a life as we can post-MC.
Kind regards,
Robin
Yes, you are definitely in the right place to find tons of information, differing symptoms, treatments and opinions, none of which are discounted and all are accepted. And no question is too embarrassing to ask.
I, too am relatively new to the forum and still awaiting a firm diagnosis, but am reasonably certain it is MC. I can also relate to the sweats, but attributed them to menopause with no thought of MC. Also have had migraines all my life and again, never made a connection--maybe yes, maybe no.
As many have said it very well before, it is an individual journey to find what works best for you--we are all different. For example, I tried GF for quite some time and couldn't tell if it made a difference or not. Am now back on gluten so the Dr. can do a blood test. Since going back to "normal" eating still have not noticed a difference. Am guessing I am possibly one that is not sensitive to foods in particular as I can eat one thing one day with no problem at all and the exact same thing another and have an issue. So there you go!
Good luck on your journey. Try any of the advice that you think may fit and hopefully we will all get back to as normal a life as we can post-MC.
Kind regards,
Robin
Darby,
For additional information, try http://sites.google.com/site/jccglutenfree/
and http://glutenfreeandbeyond.org/forum/index.php
Tex
For additional information, try http://sites.google.com/site/jccglutenfree/
and http://glutenfreeandbeyond.org/forum/index.php
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.