New and Really Confused
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susanfuchs
- Posts: 8
- Joined: Sun Jul 31, 2011 12:57 pm
New and Really Confused
I had a lot of abdominal pain and watery diarrhea that would feel like battery acid at times at the first of June. My doctor sent me over to the ER for possible appendicitis - they did a contrast scan, said I had colitis, gave me hycosamine and phenergan and sent me home. I went back to see my doc who put me on a liquid diet for a week, the brat diet for a week, then slowly weaned back onto regular foods. I'm fixing to start back to college and I'm having another attack. I'm concerned about this interfering with school and life. I'm reading through the boards as well, but this is scary, especially since we purchase our insurance and they can drop us if there's too many problems. While I do have anxiety issues, I handle that without medication, and I was really excited about going to school - I've done great so far, so nerves have really calmed down the past year. I feel so lost because I don't really feel I know very much about this and how to cope with it. I also have hypothyroid and high blood pressure, and a doctor years ago told me I had a high normal ANA result. I'll keep reading, but appreciate anything my way. I live in Oklahoma.
Susan C. Fuchs
Hypothyroid July 2000; High Blood Pressure 2005; Colitis June 2011
Guess God gave me a Wal-Mart fall-apart body, hope he gave me a better brain than the bod.
Tomorrow will be better.
Hypothyroid July 2000; High Blood Pressure 2005; Colitis June 2011
Guess God gave me a Wal-Mart fall-apart body, hope he gave me a better brain than the bod.
Tomorrow will be better.
Susan,
Welcome - I'm so sorry you've had to find us, but you have come to the right place.
'Battery acid' diarrhea is definitely familiar to a lot of us. Almost every one of us is intolerant of gluten, and nearly as many of us all do not tolerate dairy in all forms. Though gluten is a huge problem, dairy is a very likely suspect in causing battery acid D. I fully understand how freaked out you must be, trying to imagine heading off to school with this going on. Truly, people who have not been through it have no idea.
I bet you can stay off the medical raider (and keep your insurance rates stable, I hope), by giving a very thorough trial of a gluten-free, dairy free diet. You may have additional foods you'll need to eliminate (soy and other legumes are the next-likeliest problems) - but you might experience some real relief starting out without dairy, and without any of the grains that contain gluten (wheat, barley, rye, spelt, kamut... and for many of us, oats, which are risky because they are often contaminated with wheat).
Advantages are - no risk, unlike medications, and no cost other than food; no unpleasant testing or side effects... and it is possible that you might experience some reduced anxiety, and improvement in other health areas. The hypothyroid and elevated ANA are often found "in the family" of gluten intolerance (anxiety also) - whether related to celiac disease, or non-celiac gluten sensitivity. Many of us have tested negative for celiac according to the standard methods, but do much better gluten free, and have horrible returning symptoms when attempting to add gluten back in. That seems like "proof" enough to me.
My blood pressure was up right before I got so sick, and has dropped since I fixed my diet. And it goes right back up when I eat out and something is in the food that I thought wouldn't be there. I also found out I was intolerant of eggs, which was far less dramatic as far as digestive upset goes, but definitely elevated my BP.
You might benefit from Enterolab testing, and your insurance would never have to know about it ;) It is far more sensitive than blood tests at revealing sensitivity to gluten and other foods. I found the results really helpful - and I also added a genetic test, which told me I have two genes for gluten sensitivity (one celiac, the other non-). There is a whole topic on that, if you go to the Forum Index.
I hope this helps and doesn't overwhelm. As you've been through the wringer, going back to a super-limited diet might help you get on track for college in the fall (like BRAT, or you can tweak it... I am a huge fan of homemade chicken broth, which got me through some dark days). No one who hasn't been there can really understand what this is like - we have been there, and we do understand. Let us know how we can help.
I can't advise about your medications, but I believe you may get some good feedback about that from another member. They aren't typical for microscopic colitis. I used Pepto Bismol (as many as 8/day) in my first weeks of illness, and it was very helpful. But not everyone tolerates it well, and it may not mix well with your Rx drugs. I only took the Pepto for under 2 weeks, and cut down rapidly from 8/day; I may be a little overly averse to medication, but that combined with eliminating dietary irritants helped me to feel better (not perfect) pretty quickly. Each of us is different, both in terms of what works and how long it takes us to improve.
You said it well - tomorrow WILL be better. Ask anything that helps you get there, and we are here for you,
Sara
Welcome - I'm so sorry you've had to find us, but you have come to the right place.
'Battery acid' diarrhea is definitely familiar to a lot of us. Almost every one of us is intolerant of gluten, and nearly as many of us all do not tolerate dairy in all forms. Though gluten is a huge problem, dairy is a very likely suspect in causing battery acid D. I fully understand how freaked out you must be, trying to imagine heading off to school with this going on. Truly, people who have not been through it have no idea.
I bet you can stay off the medical raider (and keep your insurance rates stable, I hope), by giving a very thorough trial of a gluten-free, dairy free diet. You may have additional foods you'll need to eliminate (soy and other legumes are the next-likeliest problems) - but you might experience some real relief starting out without dairy, and without any of the grains that contain gluten (wheat, barley, rye, spelt, kamut... and for many of us, oats, which are risky because they are often contaminated with wheat).
Advantages are - no risk, unlike medications, and no cost other than food; no unpleasant testing or side effects... and it is possible that you might experience some reduced anxiety, and improvement in other health areas. The hypothyroid and elevated ANA are often found "in the family" of gluten intolerance (anxiety also) - whether related to celiac disease, or non-celiac gluten sensitivity. Many of us have tested negative for celiac according to the standard methods, but do much better gluten free, and have horrible returning symptoms when attempting to add gluten back in. That seems like "proof" enough to me.
My blood pressure was up right before I got so sick, and has dropped since I fixed my diet. And it goes right back up when I eat out and something is in the food that I thought wouldn't be there. I also found out I was intolerant of eggs, which was far less dramatic as far as digestive upset goes, but definitely elevated my BP.
You might benefit from Enterolab testing, and your insurance would never have to know about it ;) It is far more sensitive than blood tests at revealing sensitivity to gluten and other foods. I found the results really helpful - and I also added a genetic test, which told me I have two genes for gluten sensitivity (one celiac, the other non-). There is a whole topic on that, if you go to the Forum Index.
I hope this helps and doesn't overwhelm. As you've been through the wringer, going back to a super-limited diet might help you get on track for college in the fall (like BRAT, or you can tweak it... I am a huge fan of homemade chicken broth, which got me through some dark days). No one who hasn't been there can really understand what this is like - we have been there, and we do understand. Let us know how we can help.
I can't advise about your medications, but I believe you may get some good feedback about that from another member. They aren't typical for microscopic colitis. I used Pepto Bismol (as many as 8/day) in my first weeks of illness, and it was very helpful. But not everyone tolerates it well, and it may not mix well with your Rx drugs. I only took the Pepto for under 2 weeks, and cut down rapidly from 8/day; I may be a little overly averse to medication, but that combined with eliminating dietary irritants helped me to feel better (not perfect) pretty quickly. Each of us is different, both in terms of what works and how long it takes us to improve.
You said it well - tomorrow WILL be better. Ask anything that helps you get there, and we are here for you,
Sara
Hi Susan,
I agree with what Sara suggested, so I won't repeat any of that. With the hypothyroidism, and high normal ANA results, eliminating gluten and dairy from your diet will also help you to avoid developing any additional autoimmune diseases in the future, because untreated gluten-sensitivity, in particular, is associated with the development of autoimmune diseases.
In addition to avoiding gluten and dairy products, (and possibly soy), be sure that you're getting plenty of vitamin D, B-12, and folic acid, because this disease tends to cause malabsorption problems, and we tend to develop vitamin and mineral deficiencies. Many of us are also magnesium deficient, and taking a magnesium supplement can help to lower blood pressure, and prevent leg/foot cramps and restless leg syndrome. Be careful with oral magnesium supplements, however, because magnesium is a laxative, if taken in significant quantity, (IOW, don't take more than about 250 mg of magnesium per day, if you take an oral supplement). Some of us use magnesium in topical form, in order to avoid the laxative effect.
If you begin the diet now, you may have your symptoms under control before school starts, and that will eliminate the insurance worries. Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
I agree with what Sara suggested, so I won't repeat any of that. With the hypothyroidism, and high normal ANA results, eliminating gluten and dairy from your diet will also help you to avoid developing any additional autoimmune diseases in the future, because untreated gluten-sensitivity, in particular, is associated with the development of autoimmune diseases.
In addition to avoiding gluten and dairy products, (and possibly soy), be sure that you're getting plenty of vitamin D, B-12, and folic acid, because this disease tends to cause malabsorption problems, and we tend to develop vitamin and mineral deficiencies. Many of us are also magnesium deficient, and taking a magnesium supplement can help to lower blood pressure, and prevent leg/foot cramps and restless leg syndrome. Be careful with oral magnesium supplements, however, because magnesium is a laxative, if taken in significant quantity, (IOW, don't take more than about 250 mg of magnesium per day, if you take an oral supplement). Some of us use magnesium in topical form, in order to avoid the laxative effect.
If you begin the diet now, you may have your symptoms under control before school starts, and that will eliminate the insurance worries. Again, welcome aboard, and please feel free to ask anything.
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.
Hi Susan,
I agree with Sara and Tex here that gluten and dairy could be the problem that is now showing itself in relation to the stress of going off to college. Stress is a major factor for many of us where a food intolerance rears it's ugly head and you end up with nonstop diarrhea that either results in a diagnosis of Microscopic Colitis or another type of Colitis. It was that way for me.
I'd just like you to also look back into your medical history as a child. Did you have times when you had digestive issues as a little girl? Do you have a history of UTI's or other odd "bacterial infections"? Often people who have a sensitivity to gluten will have this type of history. I had every symptom of appendicitis when I was 9 and was under stressful conditions. I had symptoms of endometriosis at 13. We were poor, I had less than thorough medical care, so I have no idea if I'd have had less than optimum test results in other areas, had they been done.
I found this site after being diagnosed with Microscopic Colitis via colonoscopy. I'd already been gluten free for 4 months on advice of my Naturopath, even though my celiac test was negative. My Enterolab tests showed I am gluten sensitive and since then my daughter and 18 mo. old grandson - who were exhibiting the classic symptoms - have also been tested and are positive and are now gluten free. I know that that is a daunting diagnosis to consider, but being gluten free isn't the end of your life, Susan. You are young, IF this is your problem, you can avoid YEARS of illnesses that won't be diagnosed by any MD that you see.
IF you have malabsorption going on because you are gluten sensitive, you are not absorbing nutrients that your body needs to function properly and you won't be able to absorb B & D vitamins. I've been gluten free for 2 years now and in reality, gluten had made me sick since I was a little girl. I had 2 1/2 years of nonstop diarrhea and lost nearly 50 lbs when my colonoscopy showed MC and before I got well. I did this by going gluten free and by using supplements alone, as many here have done.
I know that this is pretty overwhelming to hear and I know that the thought of being gluten free is a complete life change and would be a challenge for someone living in a dorm eating dorm food and trying to live a normal life, but reality is that this is a condition that is being recognized exponentially every month. It is LAW in Finland now that children are to be tested for gluten sensitivity by the age of 8, because those of Northern European descent are the most likely to have gluten sensitive genes - they have nationalized health insurance there - there is an incentive to cure illness.
Going gluten free was the easiest thing I ever did and I'm a caterer who has to serve breads to people daily. I am one of those here who used L-Glutamine as my primary supplement after being prescribed, and refusing, Entocort. If you cannot afford the Enterolab tests, which I highly recommend also, try being gluten free and see how you feel after several months. You cannot cheat, you cannot "cut down on", you need to eliminate it completely. It's not the end of the world, I know it sounds like it is, but you will love your new body if this is your problem.
I don't have the knowledge that Sara and Tex have, but I do have the life experience that made me well after finding this site and talking with the people here. I used to have problems with dairy and soy, but have no problems with them now. If your body is overwhelmed by gluten now, it's possible that being gluten free will enable you to eat foods you are currently reacting to.
Being gluten free isn't a fad diet, as mainstream media would like you to believe, it is a health-saving option you have. Recent research says that 1 in 100 are celiac, and 1 in 3 are gluten sensitive. As a caterer, who has to feed people according to their known food tolerances, 1 in 3 being gluten sensitive is becoming the reality.
Please PM me if you would like to talk, this place saved my life, you have found this place as most of us have, out of desperation, and we all care about you.
Connie
I agree with Sara and Tex here that gluten and dairy could be the problem that is now showing itself in relation to the stress of going off to college. Stress is a major factor for many of us where a food intolerance rears it's ugly head and you end up with nonstop diarrhea that either results in a diagnosis of Microscopic Colitis or another type of Colitis. It was that way for me.
I'd just like you to also look back into your medical history as a child. Did you have times when you had digestive issues as a little girl? Do you have a history of UTI's or other odd "bacterial infections"? Often people who have a sensitivity to gluten will have this type of history. I had every symptom of appendicitis when I was 9 and was under stressful conditions. I had symptoms of endometriosis at 13. We were poor, I had less than thorough medical care, so I have no idea if I'd have had less than optimum test results in other areas, had they been done.
I found this site after being diagnosed with Microscopic Colitis via colonoscopy. I'd already been gluten free for 4 months on advice of my Naturopath, even though my celiac test was negative. My Enterolab tests showed I am gluten sensitive and since then my daughter and 18 mo. old grandson - who were exhibiting the classic symptoms - have also been tested and are positive and are now gluten free. I know that that is a daunting diagnosis to consider, but being gluten free isn't the end of your life, Susan. You are young, IF this is your problem, you can avoid YEARS of illnesses that won't be diagnosed by any MD that you see.
IF you have malabsorption going on because you are gluten sensitive, you are not absorbing nutrients that your body needs to function properly and you won't be able to absorb B & D vitamins. I've been gluten free for 2 years now and in reality, gluten had made me sick since I was a little girl. I had 2 1/2 years of nonstop diarrhea and lost nearly 50 lbs when my colonoscopy showed MC and before I got well. I did this by going gluten free and by using supplements alone, as many here have done.
I know that this is pretty overwhelming to hear and I know that the thought of being gluten free is a complete life change and would be a challenge for someone living in a dorm eating dorm food and trying to live a normal life, but reality is that this is a condition that is being recognized exponentially every month. It is LAW in Finland now that children are to be tested for gluten sensitivity by the age of 8, because those of Northern European descent are the most likely to have gluten sensitive genes - they have nationalized health insurance there - there is an incentive to cure illness.
Going gluten free was the easiest thing I ever did and I'm a caterer who has to serve breads to people daily. I am one of those here who used L-Glutamine as my primary supplement after being prescribed, and refusing, Entocort. If you cannot afford the Enterolab tests, which I highly recommend also, try being gluten free and see how you feel after several months. You cannot cheat, you cannot "cut down on", you need to eliminate it completely. It's not the end of the world, I know it sounds like it is, but you will love your new body if this is your problem.
I don't have the knowledge that Sara and Tex have, but I do have the life experience that made me well after finding this site and talking with the people here. I used to have problems with dairy and soy, but have no problems with them now. If your body is overwhelmed by gluten now, it's possible that being gluten free will enable you to eat foods you are currently reacting to.
Being gluten free isn't a fad diet, as mainstream media would like you to believe, it is a health-saving option you have. Recent research says that 1 in 100 are celiac, and 1 in 3 are gluten sensitive. As a caterer, who has to feed people according to their known food tolerances, 1 in 3 being gluten sensitive is becoming the reality.
Please PM me if you would like to talk, this place saved my life, you have found this place as most of us have, out of desperation, and we all care about you.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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susanfuchs
- Posts: 8
- Joined: Sun Jul 31, 2011 12:57 pm
Thank you!
Wow. I'm just overwhelmed at the support -I really appreciate it. I've always had digestive issues, but I have such horrid allergies I always thought the problems were from the drainage associated with the allergies. Just the idea of a gluten-free diet really depresses me, but you've made it sound so easy I'm a lot more willing to give it a try. I've never been a big legume eater, and with the thyroid problems, I avoided soy. Right now I'm back bratting away (bananas, rice, applesauce, toast). The toast - well, I'm going to have to work around that, huh. The hypothyroid makes it difficult to absorb a lot of vitamins, so my doc had put me on a prenatal vitamin, but I don't take it while I'm having problems.
Again, thank you for all the amazing support - I'm going to get back to reading. It seems I have a LOT to learn about this. PM me anytime.
Again, thank you for all the amazing support - I'm going to get back to reading. It seems I have a LOT to learn about this. PM me anytime.
Susan C. Fuchs
Hypothyroid July 2000; High Blood Pressure 2005; Colitis June 2011
Guess God gave me a Wal-Mart fall-apart body, hope he gave me a better brain than the bod.
Tomorrow will be better.
Hypothyroid July 2000; High Blood Pressure 2005; Colitis June 2011
Guess God gave me a Wal-Mart fall-apart body, hope he gave me a better brain than the bod.
Tomorrow will be better.
Susan,
I hesitate to bring this up now, because it's easy to feel overwhelmed by all the new information necessary to deal with MC, and I don't want you to feel that all this is too much to deal with, because it's not too much to deal with. We just have to learn to deal with one issue at a time, and take our recovery one day at a time.
Allergies are very commonly linked with MC, and with other autoimmune diseases. Many of us find that just by eliminating gluten and dairy products from our diet, our allergy symptoms decrease significantly, and in some cases they even disappear completely. Several members have reported, for example, that their asthma is no longer a problem, with gluten and dairy eliminated from their diet. I had allergies all my life, first asthma, and then hay fever, but during the last couple of years, after making diet changes and taking supplements, my allergies seem to have almost completely disappeared.
Many of us have mast cell issues, associated with MC, and so we have to make certain changes, to reduce the amount of histamines in our body, in order to completely resolve all our symptoms. If you find that your allergy symptoms, and/or your MC symptoms, do not improve significantly, after a month or so on the diet, please ask about this, and we can discuss other additional steps to help control those symptoms.
Good luck with your treatment program, and never hesitate to ask, if you have any questions or concerns about symptoms or treatment. And please keep us updated from time to time, on how your recovery is progressing.
Tex
I hesitate to bring this up now, because it's easy to feel overwhelmed by all the new information necessary to deal with MC, and I don't want you to feel that all this is too much to deal with, because it's not too much to deal with. We just have to learn to deal with one issue at a time, and take our recovery one day at a time.
Allergies are very commonly linked with MC, and with other autoimmune diseases. Many of us find that just by eliminating gluten and dairy products from our diet, our allergy symptoms decrease significantly, and in some cases they even disappear completely. Several members have reported, for example, that their asthma is no longer a problem, with gluten and dairy eliminated from their diet. I had allergies all my life, first asthma, and then hay fever, but during the last couple of years, after making diet changes and taking supplements, my allergies seem to have almost completely disappeared.
Many of us have mast cell issues, associated with MC, and so we have to make certain changes, to reduce the amount of histamines in our body, in order to completely resolve all our symptoms. If you find that your allergy symptoms, and/or your MC symptoms, do not improve significantly, after a month or so on the diet, please ask about this, and we can discuss other additional steps to help control those symptoms.
Good luck with your treatment program, and never hesitate to ask, if you have any questions or concerns about symptoms or treatment. And please keep us updated from time to time, on how your recovery is progressing.
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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susanfuchs
- Posts: 8
- Joined: Sun Jul 31, 2011 12:57 pm
Life Goes On
I am just amazed at the caring and helpful information I've found here. Please don't EVER be afraid to bring anything up. As overwhelming as this can be, I know I still have to deal with it, so I just gotta suck it up and go on. I may just pout a wee bit before I do it. All my doctor told me initially was I had colitis, stick to a liquid diet for a week, then the brat diet, then soft, bland foods, then gradually add in regular foods. That was okay at first, but now I'm having another attack so that obviously is not enough.
As soon as this attack eases up, I'll try a gluten free diet and see where that gets me. It seems that yogurt would be beneficial . . .
Susan
As soon as this attack eases up, I'll try a gluten free diet and see where that gets me. It seems that yogurt would be beneficial . . .
Susan
Susan C. Fuchs
Hypothyroid July 2000; High Blood Pressure 2005; Colitis June 2011
Guess God gave me a Wal-Mart fall-apart body, hope he gave me a better brain than the bod.
Tomorrow will be better.
Hypothyroid July 2000; High Blood Pressure 2005; Colitis June 2011
Guess God gave me a Wal-Mart fall-apart body, hope he gave me a better brain than the bod.
Tomorrow will be better.
Susan,
It's possible your attack will ease up faster if you drop gluten (that was absolutely true for me). Dairy is definitely out for anyone with a digestive thing going on (that's why it's not in the BRAT diet!) - and the second likeliest offender, after gluten, for keeping an attack going. You may not be intolerant of dairy, but when you're in a major flare-up you can't even tell what you're reacting to. Once you get your system calm and stable, you can test whether dairy is still your friend.
Aside from bananas and applesauce, I did well with chicken broth, small amounts of chicken, and only added well-cooked vegetables later. All added oils can upset the system when you're in a big reaction, but a boiled potato might work. (I started adding them to my chicken soup... it was boring, but it worked.) At one point, I actually added bananas to my chicken broth, just to break up the boredom (it was surprisingly good - go figure).
You go ahead and pout a bit. Friends and family who haven't been through this may be sympathetic, but this is nothing like a 24-hour bug. Even the first 24 hours was a thousand times worse than any 24-hour bug I've ever had.
Are your medications helping? I'm not familiar with them - are they meant to be taken long term, or just to get you out of the woods?
Hope you start feeling better soon,
Sara
It's possible your attack will ease up faster if you drop gluten (that was absolutely true for me). Dairy is definitely out for anyone with a digestive thing going on (that's why it's not in the BRAT diet!) - and the second likeliest offender, after gluten, for keeping an attack going. You may not be intolerant of dairy, but when you're in a major flare-up you can't even tell what you're reacting to. Once you get your system calm and stable, you can test whether dairy is still your friend.
Aside from bananas and applesauce, I did well with chicken broth, small amounts of chicken, and only added well-cooked vegetables later. All added oils can upset the system when you're in a big reaction, but a boiled potato might work. (I started adding them to my chicken soup... it was boring, but it worked.) At one point, I actually added bananas to my chicken broth, just to break up the boredom (it was surprisingly good - go figure).
You go ahead and pout a bit. Friends and family who haven't been through this may be sympathetic, but this is nothing like a 24-hour bug. Even the first 24 hours was a thousand times worse than any 24-hour bug I've ever had.
Are your medications helping? I'm not familiar with them - are they meant to be taken long term, or just to get you out of the woods?
Hope you start feeling better soon,
Sara
Hi Susan,
I have to say that I love your attitude and openness to learning and your determination to get well. I agree with Sara that you need to drop gluten NOW. Anything that you'd put in a sandwich can be wrapped in a lettuce leaf instead. Frankly, I just went cold turkey on the bread front, I've found few GF breads worth eating unless they're toasted. I have recently developed an obsession with cupcakes as a way to treat myself, as this bake shop is only 10 minutes from my house: http://cravebakeshop.com/ Kyra is the genius of cupcakes and absolutely adorable. She is focused on "goodies" at her bakery now, but is determined to expand to breads and I've no doubt she will succeed.
Here is a link to the protocol I used in the beginning. I had already been gluten free for over 4 months when I posted it, so I had a head start on that front: http://www.perskyfarms.com/phpBB2/viewt ... highlight=
I believe that the proBoulardi and Probiotics and L-Glutamine had an immediate effect of calming my system. I didn't use the Immodium or Coconut oil for very long and had a bad reaction to Pepto Bismol. I quit taking the L-Glutamine about 14 months ago just to see if I'd have a reaction and had none. Occasionally I'll still take it if I've been glutened or am feeling a bit off. I still take a bunch of supplements, fish oil, etc., and am especially careful to take Vit D as well as B6 & B12 sublingually.
You are learning about this at a young age, very likely before your body has been permanently damaged. I'm so grateful that my 18 month old grandson already knows and in just the 3 1/2 months that he's been gluten free, he's become a different boy. I wish I could have spared my daughters the damage and problems they have to deal with had I known earlier.
I live by the motto "Question Everything" and this is especially true where western medicine is concerned. The only thing we can control is what we put into our body and this includes all the drugs our doctors prescribe that mask a condition. "You are what you eat" and nobody knows this better than those of us who learned the hard way.
Connie
I have to say that I love your attitude and openness to learning and your determination to get well. I agree with Sara that you need to drop gluten NOW. Anything that you'd put in a sandwich can be wrapped in a lettuce leaf instead. Frankly, I just went cold turkey on the bread front, I've found few GF breads worth eating unless they're toasted. I have recently developed an obsession with cupcakes as a way to treat myself, as this bake shop is only 10 minutes from my house: http://cravebakeshop.com/ Kyra is the genius of cupcakes and absolutely adorable. She is focused on "goodies" at her bakery now, but is determined to expand to breads and I've no doubt she will succeed.
Here is a link to the protocol I used in the beginning. I had already been gluten free for over 4 months when I posted it, so I had a head start on that front: http://www.perskyfarms.com/phpBB2/viewt ... highlight=
I believe that the proBoulardi and Probiotics and L-Glutamine had an immediate effect of calming my system. I didn't use the Immodium or Coconut oil for very long and had a bad reaction to Pepto Bismol. I quit taking the L-Glutamine about 14 months ago just to see if I'd have a reaction and had none. Occasionally I'll still take it if I've been glutened or am feeling a bit off. I still take a bunch of supplements, fish oil, etc., and am especially careful to take Vit D as well as B6 & B12 sublingually.
You are learning about this at a young age, very likely before your body has been permanently damaged. I'm so grateful that my 18 month old grandson already knows and in just the 3 1/2 months that he's been gluten free, he's become a different boy. I wish I could have spared my daughters the damage and problems they have to deal with had I known earlier.
I live by the motto "Question Everything" and this is especially true where western medicine is concerned. The only thing we can control is what we put into our body and this includes all the drugs our doctors prescribe that mask a condition. "You are what you eat" and nobody knows this better than those of us who learned the hard way.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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susanfuchs
- Posts: 8
- Joined: Sun Jul 31, 2011 12:57 pm
I'm not sure, but I think the hyocsamine or hycosamine was just to get me through that first attack. It knocks me out, so it's not a very good long-term solution. My doc didn't put me on anything long term, just told me to gradually add foods back in. I was back to what I was eating before when I had the second attack. It sounds like this is managed through diet, so I'm trying the gluten-free diet for the next two weeks to a month and see if my symptoms don't improve.sarkin wrote:Are your medications helping? I'm not familiar with them - are they meant to be taken long term, or just to get you out of the woods?
I always have been a "shi* or get off the pot" kind of person (sorry for the pun) - I have two choices, deal or don't. Since not dealing is quite painful, extremely smelly and can be embarrassing as hell (anal seepage), dealing is looking pretty good right now. I'm still angry and resentful at yet another problem, but that's not going to stop the pain and frequent bathroom breaks. At least it's giving me a chance to catch up on reading (while indisposed) and family history (while waiting for the next land run).
Ok, back to more reading - thank you all for all the help! Yes, it will get better.
Susan C. Fuchs
Hypothyroid July 2000; High Blood Pressure 2005; Colitis June 2011
Guess God gave me a Wal-Mart fall-apart body, hope he gave me a better brain than the bod.
Tomorrow will be better.
Hypothyroid July 2000; High Blood Pressure 2005; Colitis June 2011
Guess God gave me a Wal-Mart fall-apart body, hope he gave me a better brain than the bod.
Tomorrow will be better.
Hi Susan,
Welcome to our little family! I was diagnosed June 13th so I know your feeling of newness and being overwhelmed quite well. I've found the members' responses to be of great help and support. I know you will, too.
When I was diagnosed with Microscopic Collagenous Colitis in June, I immediately cut out all gluten and dairy. It has been a challenge as this requires reading ALL labels, and even then some manufacturers don't list every ingredient. Still, it's made a huge difference for me. I'm not as tired, bloated, nauseous, and such as I was prior to the diagnosis. I'd had 5 weeks of explosive D (XD) up to 25 times a day. I'm also taking Entocort (9mg) each day. The combination has tapered my diarrhea and given me more energy than I've had in a long while.
I think Sara and Tex's suggestions of the Enterolab could be valuable for you, if you can afford them. I haven't gone that route yet because my colonoscopy included a biopsy that proved I have MCC. That said, I would like to learn what other things I am sensitive or allergic to, if any.
I'm glad you found this website. Remember, we are all here for you and each other.
Hugs, Sharaine
Welcome to our little family! I was diagnosed June 13th so I know your feeling of newness and being overwhelmed quite well. I've found the members' responses to be of great help and support. I know you will, too.
When I was diagnosed with Microscopic Collagenous Colitis in June, I immediately cut out all gluten and dairy. It has been a challenge as this requires reading ALL labels, and even then some manufacturers don't list every ingredient. Still, it's made a huge difference for me. I'm not as tired, bloated, nauseous, and such as I was prior to the diagnosis. I'd had 5 weeks of explosive D (XD) up to 25 times a day. I'm also taking Entocort (9mg) each day. The combination has tapered my diarrhea and given me more energy than I've had in a long while.
I think Sara and Tex's suggestions of the Enterolab could be valuable for you, if you can afford them. I haven't gone that route yet because my colonoscopy included a biopsy that proved I have MCC. That said, I would like to learn what other things I am sensitive or allergic to, if any.
I'm glad you found this website. Remember, we are all here for you and each other.
Hugs, Sharaine