Hi, Everyone:
so glad to have find some other folks who suffer from this weird auto-immune disorder. I'm sure much of what I'm going to ask has been asked before so please forgive me for redundancies.
First thing, this has really thrown me for a loop. Unlike what I've seen from many of your patient profiles, I have never been susceptible to stomach problems in the past. I've always eaten well and eaten alot and all kinds of foods and yes, I've had diarrhea on occasion, but never prolonged or sever.
On May 1, I was at an outdoor music fest and had several beers each day for 3 days I also ate some nasty "fried chicken on a stick" thing that was gross and greasy, greasy, greasy. That weekend, I had diarrhea several times, but I've had D before after having had several drinks, so didn't think it was all that odd. I started feeling a little bit better later that week, but the next week, I started my period. Had D the first day, which, again, is normal for me to experience on my first day, along with cramps. Since that day, the D progressively got worse and more and more urgent. At the 3 week mark (3 weeks after the first D during the Music Fest weekend of May 1) I went to my GP. She prescribed lomotil. Lomotil helped with the urgency and the frequency, but still, when I did go (1-2 times per day) was diarrhea. Returned to the GP after a week since the D had not subsided. GP referred me to gastroenterologist.
Had to give the gastro doc a stool sample (nightmare to do in the doc's office, BTW, when you're having D). No bacteria found. Last week (week 6 of diarrhea, though somewhat controlled because of lomotil) had sigmoidoscopy which found LC. Blood test showed no celiac but it sounds as though I shouldn't trust that.
I do have hypothyroidism and vitiligo (both auto immune-related) so I guess I'm not surprised, but I've never had a problem with food in the past. No problems digesting any foods. Could I just all of a sudden become intolerant of gluten and soy and dairy and whatnot?
Gastro Doc says "there's no medical proof that any particular diet helps with LC" and he's put me on Lialda cause I can't stay on Lomotil forever. I went off the lomotil a coupla weeks ago for 36 hours and had D 7-8 times in one day so I'm afraid of going off it.
My insurance doesn't cover much. How expensive are the enterolab tests? I feel like I could give up glutens relatively easily so long as I shop at WholeFoods who has a whole line of gluten-free products.
Does baby food help? Also, since all this started, I tried the BRAT diet for like 2 weeks with the addition of chicken noodle soup and bread and crackers and it didn't seem to help. Course there's prob gluten in all the breads, crackers and pastas I was eating in addition to the bananas rice and tea, so I guess it figures.
I'm SO sad to have to give up so many foods I love. It sounds lame, and I know you all have done, it. I just can't imagine not being able to go out to dinner or eat pasta! YikeS!!!
Newly Diagnosed and very confused
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Joy,
Welcome to our internet family.
MC is a very complex disease, very poorly understood by the medical profession. For some of us, symptoms increase gradually, while for others, the onset can be virtually overnight. Your experience sounds very typical.
Many/most people in the general population carry the genes for the disease, but they are never triggered. For those of us who develop the disease, some external event, (or combination of events), always involving some form of intestinal trauma, is necessary to trigger the genes, to allow the disease to actually develop. Quite often, when these genes are triggered, certain food intolerance genes are also triggered at the same time, most frequently, resulting in gluten-sensitivity, casein-sensitivity, and for about half of us, soy-sensitivity. Other intolerances are a possibility, of course, for a few of us.
Since hormones play a part in the development of symptoms, menses symptoms are definitely affected by the disease, but the timing in your case was probably just a coincidence, (IOW, I doubt that your period triggered the disease, but it probably helped to make the symptoms worse). Stress also tends to increase the severity of symptoms.
If your doctor won't give you a prescription renewal for Lomotil, many members get good "temporary" results from Imodium, which is available OTC. Many of us have found that it works just as well for us as Lomotil, and some find that it works better.
Only a handful of GI doctors are progressive enough to recognize that diet plays a huge role in inflammatory bowel diseases. Most GI docs are still practicing in the stone age, when it comes to treating the IBDs. All they know how to do, is to order tests, and write prescriptions.
Lomotil only treats the symptoms, of course, and does nothing to help reduce the inflammation, so in the long run, you need to either modify your diet, to eliminate the source of the inflammation, in the first place, or take an inflammation-suppressing drug. Lialda might work for you, but a much better choice is Entocort EC. I haven't checked the price of Lialda, but I'll bet it's in the same range as Entocort, (IOW, very expensive). If you need to go that route, we can share information on where many of our members buy such drugs, if they can't afford a prescription in the U. S.
As lab tests go, the Enterolab tests are a bargain. However, that does not mean that they are cheap. They run from roughly $100 to $150 per test, and most insurance companies will not cover them. Some will cover them, if a doctor orders the tests, but if your doctor insists that diet has nothing to do with microscopic colitis, (MC), then he or she will probably not be willing to prescribe those tests. Prior to the development of the Enterolab tests, most stool tests for food intolerances were totally worthless, and most GI docs have never gotten past that mindset. IOW, they don't stay up to date very well on technology.
You can test yourself, of course, by following an elimination test procedure, (described on this site), to determine your food intolerances. http://www.perskyfarms.com/phpBB2/viewforum.php?f=6 The Enterolab tests simply allow an easier, reliable, and accurate way to do it.
The BRAT diet helps, but for most of us, BRAT means Bananas, Rice, Applesauce, and Tea, (not toast, or crackers, unless they're gluten free). Yes, running your food through a food processor, helps. The main thing to do, though, is to avoid all gluten, and dairy products, (and maybe soy), and minimize fiber, as much as possible. Eat NO raw vegetables or fruit, (except bananas). If you eat any fruit or vegetables, they should be well cooked, (cooked to mush), and definitely peeled, (most of the fiber is in the peel). Most of us do well on chicken or pork, (not injected with any "tenderizing" or "moisturizing" solutions), rice, mashed potatoes, sweet potatoes, and veggies such as squash. Nuts are best avoided, until you are doing better, and then you can test them. Tea is good, especially green tea, but avoid all artificial sweeteners, and you may need to minimize all sugar, if it seems to bother you. Coffee is OK, as long as you avoid using milk in it, unless coffee caused problems for you before you developed LC.
If you have to have pasta, there are gluten-free, (GF), versions available. There are GF versions of just about everything, available, but be aware that some of us react to some of them because of other ingredients, or because of fiber content - it's always safest to do our own cooking. Also, one of our members is a chef, and she has assembled several hundred gourmet-quality recipes here that are free of gluten, dairy products, and soy:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
Welcome to our internet family.
MC is a very complex disease, very poorly understood by the medical profession. For some of us, symptoms increase gradually, while for others, the onset can be virtually overnight. Your experience sounds very typical.
Many/most people in the general population carry the genes for the disease, but they are never triggered. For those of us who develop the disease, some external event, (or combination of events), always involving some form of intestinal trauma, is necessary to trigger the genes, to allow the disease to actually develop. Quite often, when these genes are triggered, certain food intolerance genes are also triggered at the same time, most frequently, resulting in gluten-sensitivity, casein-sensitivity, and for about half of us, soy-sensitivity. Other intolerances are a possibility, of course, for a few of us.
Since hormones play a part in the development of symptoms, menses symptoms are definitely affected by the disease, but the timing in your case was probably just a coincidence, (IOW, I doubt that your period triggered the disease, but it probably helped to make the symptoms worse). Stress also tends to increase the severity of symptoms.
If your doctor won't give you a prescription renewal for Lomotil, many members get good "temporary" results from Imodium, which is available OTC. Many of us have found that it works just as well for us as Lomotil, and some find that it works better.
Only a handful of GI doctors are progressive enough to recognize that diet plays a huge role in inflammatory bowel diseases. Most GI docs are still practicing in the stone age, when it comes to treating the IBDs. All they know how to do, is to order tests, and write prescriptions.
Lomotil only treats the symptoms, of course, and does nothing to help reduce the inflammation, so in the long run, you need to either modify your diet, to eliminate the source of the inflammation, in the first place, or take an inflammation-suppressing drug. Lialda might work for you, but a much better choice is Entocort EC. I haven't checked the price of Lialda, but I'll bet it's in the same range as Entocort, (IOW, very expensive). If you need to go that route, we can share information on where many of our members buy such drugs, if they can't afford a prescription in the U. S.
As lab tests go, the Enterolab tests are a bargain. However, that does not mean that they are cheap. They run from roughly $100 to $150 per test, and most insurance companies will not cover them. Some will cover them, if a doctor orders the tests, but if your doctor insists that diet has nothing to do with microscopic colitis, (MC), then he or she will probably not be willing to prescribe those tests. Prior to the development of the Enterolab tests, most stool tests for food intolerances were totally worthless, and most GI docs have never gotten past that mindset. IOW, they don't stay up to date very well on technology.
You can test yourself, of course, by following an elimination test procedure, (described on this site), to determine your food intolerances. http://www.perskyfarms.com/phpBB2/viewforum.php?f=6 The Enterolab tests simply allow an easier, reliable, and accurate way to do it.
The BRAT diet helps, but for most of us, BRAT means Bananas, Rice, Applesauce, and Tea, (not toast, or crackers, unless they're gluten free). Yes, running your food through a food processor, helps. The main thing to do, though, is to avoid all gluten, and dairy products, (and maybe soy), and minimize fiber, as much as possible. Eat NO raw vegetables or fruit, (except bananas). If you eat any fruit or vegetables, they should be well cooked, (cooked to mush), and definitely peeled, (most of the fiber is in the peel). Most of us do well on chicken or pork, (not injected with any "tenderizing" or "moisturizing" solutions), rice, mashed potatoes, sweet potatoes, and veggies such as squash. Nuts are best avoided, until you are doing better, and then you can test them. Tea is good, especially green tea, but avoid all artificial sweeteners, and you may need to minimize all sugar, if it seems to bother you. Coffee is OK, as long as you avoid using milk in it, unless coffee caused problems for you before you developed LC.
If you have to have pasta, there are gluten-free, (GF), versions available. There are GF versions of just about everything, available, but be aware that some of us react to some of them because of other ingredients, or because of fiber content - it's always safest to do our own cooking. Also, one of our members is a chef, and she has assembled several hundred gourmet-quality recipes here that are free of gluten, dairy products, and soy:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Again, welcome aboard, and please feel free to ask anything that comes to mind.
Tex (Wayne)
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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
WELCOME to our forum Joy. Sorry that you have had to come here, but you have found the best place you could be for this disease.
In the recent thread about "how did MC start for you?", you will see that some of us had sudden-onset too and had been able to eat almost anything before that with no obvious problems. You are "lucky" to have been diagnosed relatively soon after onset .. some of us have suffered for years before getting a diagnoses ( and then got no help for symptoms even then.)
I suggest that you not believe it when you are told that food has nothing to do with MC. I have been a real terrible die-hard when it comes to holding out hope that I will be able to find some magic bullet that will allow me to go on eating as I would like. I too felt great sadness at the idea of giving up wheat. But after a few weeks of "experimenting", I have had to conclude that diet really is the best way for reaching remission.
Still, we all have to find our own way through this, and that way has to be one you are ready and willing to go. And it will take some time to adjust mentally and emotionally. As Tex said, there are lots of very good alternatives, replacements and choices out there. It is really not as bad as I thought it would be. Wishing you the best in your journey to getting bettter,
Another pretty much "newbie" ,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
from Hong Kong.I wish you all the best on your road to remission. In dark times you can find understanding, knowledge and help from here. I have found that new food choices are not as bad as they seem at first. Whether you do Diet and Meds or just Diet, there is hope for getting the better of this da@**d condition.
The sun will shine...
Best, Ant
Many thanks!
Thanks, all of you, for the warm welcome and words of encouragement! I am going to try the testing method you outline here for food sensitivities and in the mean time, tonight in fact, I'm heading over to Whole Foods to try out some of their food that they make in a wheat and gluten free facility. Thank goodness for Whole Foods! It will make my learning process MUCH easier.
This place is awesome and full of great information. May take you awhile to dig through it all. I'm still diggin
In fact the answer Tex sent you was more new stuff for me. I followed the link to the Elimination Diet and I think I'm going to check it out!We are all slightly different in the paths we've walked with our disorder's but we all share something alike and that's why this place is so full of support and, thanks to many who have been walking down this road awhile, great advice. What may work for one apparently isn't going to work for all. But since the doctors really do not seem to have a grasp on all this, it's up to us to listen to our own bodies and learn as we go. WE ARE ALL here to support you while you walk through yours. Keep us posted and maybe if one thing doesn't work for you someone else may have a suggestion for something that will. Good luck gmnjoy21!
-Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain-
Kim
Kim
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome!
G'day from my homeland -Australia,
and given i am in france working you get a bonjour as well (and kiss on each cheek)
Adjusting to life with MC is hard, there are no short cuts or easy ways!
I can attest that it does get better. I was diagnosed 6 months ago.
my management plan has been and is
- Using suggested diet regimes on this site, (I have eliminated gluten and then eliminated other ingredients that i reacted to yeast, lactose, soy etc)
- eating meals that are easy to digest (well cooked, not many ingredients)
- small amount of meds namely to support work requirements
- natural support via acupuncture and sub lingual vitamins
- relaxation techniques such as yoga stretches etc
- acceptance of my condition, and transparency, i dont try to hide it persay. i communicate my limitations with work colleagues, this has removed alot of stress in relation to the condition
Take it one very small step at a time and not rushing it.
Yes there will be foods/drinks that you may have to give up, but the quality of life without D to me is worth that small sacrifice!
you may notice some other threads recently, i have travelled 36 hours from Australia to France for a project for my workand so far so good, my techniques are working as with minimal med support i have not had any D issues. given i am working 10 - 12 hour days, i am pretty happy with that.
there are amazing wonderful people in this family that will help you anyway they can. you can ask any question and sure enough at least one of us has had similar situation (no topic is too grosse and we have some wicked nick names for some of our symptoms.... )
sorry you had to find us - but feel assured that if you approach it the right way, MC will not own your life.
best of luck - take a deep breathe and if you have the time peruse a few of the threads. at worst you will get a laugh with some of them...
G'day from my homeland -Australia,
and given i am in france working you get a bonjour as well (and kiss on each cheek)
Adjusting to life with MC is hard, there are no short cuts or easy ways!
I can attest that it does get better. I was diagnosed 6 months ago.
my management plan has been and is
- Using suggested diet regimes on this site, (I have eliminated gluten and then eliminated other ingredients that i reacted to yeast, lactose, soy etc)
- eating meals that are easy to digest (well cooked, not many ingredients)
- small amount of meds namely to support work requirements
- natural support via acupuncture and sub lingual vitamins
- relaxation techniques such as yoga stretches etc
- acceptance of my condition, and transparency, i dont try to hide it persay. i communicate my limitations with work colleagues, this has removed alot of stress in relation to the condition
Take it one very small step at a time and not rushing it.
Yes there will be foods/drinks that you may have to give up, but the quality of life without D to me is worth that small sacrifice!
you may notice some other threads recently, i have travelled 36 hours from Australia to France for a project for my workand so far so good, my techniques are working as with minimal med support i have not had any D issues. given i am working 10 - 12 hour days, i am pretty happy with that.
there are amazing wonderful people in this family that will help you anyway they can. you can ask any question and sure enough at least one of us has had similar situation (no topic is too grosse and we have some wicked nick names for some of our symptoms.... )
sorry you had to find us - but feel assured that if you approach it the right way, MC will not own your life.
best of luck - take a deep breathe and if you have the time peruse a few of the threads. at worst you will get a laugh with some of them...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
There are many, many of us who are helped by diet. I never took the Lialda or Entocort that was offered to me because I found Tex, Dr. Polly and the PP.Technically, that statement is correct, of course, because no one has ever done any "official" medical trials to verify that the proper diet changes can resolve the symptoms of LC. (No one would sponsor such tests, because drug companies pay for most trials, and they are not interested in paying for trials that do not require the use of drugs, obviously).gmnjoy21 wrote:Gastro Doc says "there's no medical proof that any particular diet helps with LC"
Many doctors who make statements such as that can be told by patient after patient, that their symptoms were resolved by their diet changes, but the doctors will steadfastly refuse to believe it, because "no medical proof exists". I view that closed-minded attitude as a perfect example of "educated stupidity". Fortunately, more and more doctors are beginning to be more open-minded, and they actually listen to what their patients are telling them.
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.
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Joy welcome to the site. My story is fairly similar to the others and there is not much to add. Overall I was diagnosed this past April and have been on entocort and a limited ingredients simplified diet. I plan on following this plan for another month and then I will re-evaluate based on how I do once I taper off of the entocort.
While this has been a real learning experience, I will have to say you are visiting the best website around for dealing with MC.
Take care
--Joe
While this has been a real learning experience, I will have to say you are visiting the best website around for dealing with MC.
Take care
--Joe
Joe