Hi everyone ... I just registered.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Wayne,
Welcome to the board, (from another Wayne).
Your digestive system symptoms are classic MC symptoms. Your GI doc's advice about the diary products is probably valid, but I wouldn't worry too much about the caffeine, unless you feel that it actually bothers you. Most of us are not adversely affected by caffeine, (other than the normal effects that are typical for anyone in the general population). Immodium can come in handy on a short-term basis, if you have to make a trip, or for whatever reason, won't have a bathroom handy, but it is not a practical way to control the symptoms of MC, in the long run.
I'm kind of surprised that he or she didn't offer you a prescription to one of the 5 -ASA meds, (such as Asacol, Pentasa, Rowasa, or Colasal), or a corticosteroid, (such as Entocort, or Prednisone). There are a few others that can be used, but those are the most common. Outside of those meds, the only other way to control your symptoms is through diet control, (or a combination of diet and meds).
I would suggest that you continue with the GF diet, if you have already started it, since that is the way that many of us control our symptoms, with good results. Many of us also have to avoid certain other foods, particularly dairy products, while others have to also avoid soy, and some also have to avoid items such as corn, yeast, eggs, and a few other items.
You are quite correct that this condition has a connection with celiac disease, since most of us are just as gluten sensitive as celiacs, but our sensitivity is not normally detectable by the classic celiac blood tests. We sometimes refer to it as "celiac lite". It is easily detected by the stool tests offered by Enterolab, in Dallas, however, and that is where most of us have done our testing.
Please don't give up on the GF diet too quickly. It took some of us as long as a year to achieve remission. The longer you have been accruing damage to your intestines from gluten, the longer it will take to heal, as a general rule.
The bottom line is: MC cannot be cured, but it's symptoms can certainly be controlled, and you can definitely get your life back, if you're willing to adopt a treatment program, and stick to it. The net result is that if you choose to control your symptoms by diet, then you will probably have to diligently follow that diet for the rest of your days. By the same token, if you choose to control your symptoms by the use of medications, then you will probably have to take a maintenance dose for the rest of your life. Many doctors think that they can prescribe an eight-week treatment program with a corticosteroid, and "cure" MC. A few days after the treatment program ends, however, the symptoms will virtually always return with a vengeance, at which point the doctor will act surprised, and prescribe another round, or another med. They seem to have a real problem comprehending the fact that MC cannot be "cured".
The good news is that people who follow the GF diet live longer than the general public, because it is a healthier diet than most people normally eat. Also, many of us have found that after our gut has had sufficient time to heal, (sometimes as long as a couple of years or so), then we can sometimes successfully reintroduce certain foods back into our diets. For example, most of us have a problem with lettuce, and various other raw vegetables which are high in fiber, but after our gut heals, we can eat them again, without problems.
Feel free to ask anything about MC, as we've all been there, done that, and no one understands MC, unless they actually have it. MC can be a very humbling disease, and contrary to the attitude that most doctors have about it, it is definitely a life-altering disease. We make adjustments, though, and learn to live with it.
Again, welcome to the board.
Tex
Welcome to the board, (from another Wayne).
Your digestive system symptoms are classic MC symptoms. Your GI doc's advice about the diary products is probably valid, but I wouldn't worry too much about the caffeine, unless you feel that it actually bothers you. Most of us are not adversely affected by caffeine, (other than the normal effects that are typical for anyone in the general population). Immodium can come in handy on a short-term basis, if you have to make a trip, or for whatever reason, won't have a bathroom handy, but it is not a practical way to control the symptoms of MC, in the long run.
I'm kind of surprised that he or she didn't offer you a prescription to one of the 5 -ASA meds, (such as Asacol, Pentasa, Rowasa, or Colasal), or a corticosteroid, (such as Entocort, or Prednisone). There are a few others that can be used, but those are the most common. Outside of those meds, the only other way to control your symptoms is through diet control, (or a combination of diet and meds).
I would suggest that you continue with the GF diet, if you have already started it, since that is the way that many of us control our symptoms, with good results. Many of us also have to avoid certain other foods, particularly dairy products, while others have to also avoid soy, and some also have to avoid items such as corn, yeast, eggs, and a few other items.
You are quite correct that this condition has a connection with celiac disease, since most of us are just as gluten sensitive as celiacs, but our sensitivity is not normally detectable by the classic celiac blood tests. We sometimes refer to it as "celiac lite". It is easily detected by the stool tests offered by Enterolab, in Dallas, however, and that is where most of us have done our testing.
Please don't give up on the GF diet too quickly. It took some of us as long as a year to achieve remission. The longer you have been accruing damage to your intestines from gluten, the longer it will take to heal, as a general rule.
The bottom line is: MC cannot be cured, but it's symptoms can certainly be controlled, and you can definitely get your life back, if you're willing to adopt a treatment program, and stick to it. The net result is that if you choose to control your symptoms by diet, then you will probably have to diligently follow that diet for the rest of your days. By the same token, if you choose to control your symptoms by the use of medications, then you will probably have to take a maintenance dose for the rest of your life. Many doctors think that they can prescribe an eight-week treatment program with a corticosteroid, and "cure" MC. A few days after the treatment program ends, however, the symptoms will virtually always return with a vengeance, at which point the doctor will act surprised, and prescribe another round, or another med. They seem to have a real problem comprehending the fact that MC cannot be "cured".
The good news is that people who follow the GF diet live longer than the general public, because it is a healthier diet than most people normally eat. Also, many of us have found that after our gut has had sufficient time to heal, (sometimes as long as a couple of years or so), then we can sometimes successfully reintroduce certain foods back into our diets. For example, most of us have a problem with lettuce, and various other raw vegetables which are high in fiber, but after our gut heals, we can eat them again, without problems.
Feel free to ask anything about MC, as we've all been there, done that, and no one understands MC, unless they actually have it. MC can be a very humbling disease, and contrary to the attitude that most doctors have about it, it is definitely a life-altering disease. We make adjustments, though, and learn to live with it.
Again, welcome to the board.
Tex
Welcome Wayne!
I'm glad you found us although wish you didn't need to! We have a wealth of information here including diets and medicines that have worked for many.
My advice would be to take a proactive stance with your condition and find what works for YOU. We are all different and even though the disease is the same, the symptoms can vary as well as the treatment that works for each of us.
Dee's kitchen (found from the home page) is a wonderful place to find recipes that will accomodate your intolerances (or maybe just sound good!).
Take care of yourself and visit us often and ask as much as you would like - nothing grosses us out or offends us! We've pretty much either heard it before or experienced it ourself!
Take care,
Mars
I'm glad you found us although wish you didn't need to! We have a wealth of information here including diets and medicines that have worked for many.
My advice would be to take a proactive stance with your condition and find what works for YOU. We are all different and even though the disease is the same, the symptoms can vary as well as the treatment that works for each of us.
Dee's kitchen (found from the home page) is a wonderful place to find recipes that will accomodate your intolerances (or maybe just sound good!).
Take care of yourself and visit us often and ask as much as you would like - nothing grosses us out or offends us! We've pretty much either heard it before or experienced it ourself!
Take care,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Greetings to U Wayne----
As has been posted----I also feel your misery----and we all have been there and back---
Also---we say it like it is --so anyway U want to describe anything---GO FOR IT!!!
Nothing would embarrASS us ~~~~~~~
As U -I found all the bathrooms----was always DEPENDED---and had to be on the alert for certain ingrediants---and my tummy played many a
'ical tune~~~~~~
My GI---said to me---*cant cure U Barbara but can give U a better life* and that he did---
I HAD to be on PRED. for a bit and after that it was Colazal--which worked perfectly--
As U will read----all of us react differently to meds. so as our SALLY said---*tis a crap shoot* no pun there
As Tex said--no-one understand MC unless one has been thru it---
Hang in----pop in often to catch up on things--
There is a *WELLNESS ROAD* --and U will find it---
Barbara
As has been posted----I also feel your misery----and we all have been there and back---
Also---we say it like it is --so anyway U want to describe anything---GO FOR IT!!!
Nothing would embarrASS us ~~~~~~~
As U -I found all the bathrooms----was always DEPENDED---and had to be on the alert for certain ingrediants---and my tummy played many a
'ical tune~~~~~~My GI---said to me---*cant cure U Barbara but can give U a better life* and that he did---
I HAD to be on PRED. for a bit and after that it was Colazal--which worked perfectly--
As U will read----all of us react differently to meds. so as our SALLY said---*tis a crap shoot* no pun there
As Tex said--no-one understand MC unless one has been thru it---
Hang in----pop in often to catch up on things--
There is a *WELLNESS ROAD* --and U will find it---
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Welcome Wayne! There's a wealth of experience and information on this board. I can most assuredly say that the information gained here saved my life....and gave it back to me!
Keep to the GF diet. I didn't know to do it after my dx with MC in 2005, and I was miserable until this February when I found the board. Even after I was advised to go GF, I didn't do it religiously. I've since been dx with celiac, so I know that I HAVE to follow the GF diet. Since then, my MC has not flared and my joints are so much better. I'm even riding my horses again!
You will learn so much, and from what I have experienced, no question will go unanswered!
WelcomE!
Keep to the GF diet. I didn't know to do it after my dx with MC in 2005, and I was miserable until this February when I found the board. Even after I was advised to go GF, I didn't do it religiously. I've since been dx with celiac, so I know that I HAVE to follow the GF diet. Since then, my MC has not flared and my joints are so much better. I'm even riding my horses again!
You will learn so much, and from what I have experienced, no question will go unanswered!
WelcomE!
Trace
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annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Hi Wayne, Welcome to our home here. Sorry for the reasons you had to find us, but glad we are here. I also have mouth sores I didn't have before I was diagnosed with MC. Hang in there, there is alot of help and a great deal of info here. Again welcome Wayne! Hugs Oma 
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
Hi Wayne...I think most of us have felt as you do when we are struggling to understand a disease process that few people even know about let alone understand! Unfortunately, that includes some doctors! Wayne mentioned some meds in his post and you might want to explore that route with your doctor while you stay GF...that is, until the diet effects the positve changes you need. This is a most encouraging place to come with a very discouraging condition! Keep coming back and ask questions...that's how we all learned when we first started here. Welcome home.
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome Wayne. As others have said, so sorry for the reasons that brough you here but stick around and you will get the support, information and a place to vent when it is needed. We have all been through it and really you have to have MC to understand how it can humble one. A GF diet is something you have started and my advice would be to stick with it and it can bring about results that many a med cannot.
Maggie
Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!