Visit the Microscopic Colitis Foundation Website
Hi everyone,
I recently got diagnosed with lymphocytic colitis about three weeks ago. I am 37 years old. I have been "really" sick for about two years. I also have Type 1 diabetes (since age 21) and hypothyroidism (age 17).My whole life I have been a person who needed to go the bathroom rather urgently and always went 3-5 times a day. About two years ago, I began to get a lot of pain and aching in my back and legs and what I would describe as "chronic fatigue". I went through many doctors (my regular GP, rheumotologist, pulmonologist (because I had some strange nodules in lungs) endocrinologist) and couldn't get any answers. In the summer, my diarehhea escalated to going 10x a day and rather explosive. The back and hip/leg pain was getting so bad I was taking daily naproxen and hydrocodone to function (I have two small children, am trying to finish my PhD, and run part of the lab I am in). I was thinking I would have to quit my Phd (still not sure I can finish it in the shape I am in) and go on diability or something, I was running out of options. I finally got a colonscopy and endoscopy and the diagnosis is LC. So I started on endocort about two weeks ago and am in the process of going completely GF/DF/SF/ and egg free. I realized I am still screwing up a lot this weekend and had two days of feeling really good followed by feeling like crap today again. I am really hoping the endocort starts working better and I can figure this out soon. I feel like I have lost out on my childrens lives these past few years because I have been so sick and have spent so much of it in bed. I hope I can learn a lot from you all and glad I found you....
Introduction and my story
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rachdemots
- Little Blue Penguin
- Posts: 27
- Joined: Wed Oct 16, 2013 7:20 pm
Introduction and my story
NewdiagnosedinSD
Hi Rachel, (I'm guessing)
Welcome to our internet family. I'm intrigued that you have changed your diet so quickly. Were you lucky enough to find a GI doc who realizes that diet is the key to controlling LC?
Were you tested for celiac disease? And if so, did they check to make sure that you do not have selective IgA deficiency? Anyone who has selective IgA deficiency is incapable of producing normal amounts of immunoglobulin A, meaning that the celiac blood tests would show false negative results. The reason I ask if you were tested is because (similar to LC/CC/MC) celiac disease is strongly associated with both diabetes melitus and hypothyroidism. The fact that you were diagnosed with hypothyroidism at such a young age is very strong evidence of possible lifelong gluten sensitivity, and the symptoms you describe (urgency) certainly correlate with that possibility. IOW, it's possible that you have had asymptomatic celiac disease all these years.
Has your doctor (PCP) done a baseline bone mineral density test? I would highly recommend doing that, because untreated gluten sensitivity is the primary cause of osteoporosis, and even though your doctor probably considers you too young to have osteoporosis, if you have been gluten-sensitive from birth, it's possible that you may have already lost some bone density. And even if no damage has occurred, a baseline scan now can provide very helpful data, later in life.
With any luck at all, careful attention to your diet will enable you to get your life back, and you will soon not only be able to enjoy sharing more of your kids' lives, but you should be able to finish that PhD, too.
Recovery is virtually never smooth. It often seems to be a pattern of 2 steps forward, and 1 step back. But even if things don't seem to be going well, if we look at our condition in comparison with a month ago, it's much easier to see that we are making progress. It takes a while to heal the gut, because for most of us, the damage has been accumulating for years before we realize what has happened, and we begin to take steps to get our health back on track.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. I'm intrigued that you have changed your diet so quickly. Were you lucky enough to find a GI doc who realizes that diet is the key to controlling LC?
Were you tested for celiac disease? And if so, did they check to make sure that you do not have selective IgA deficiency? Anyone who has selective IgA deficiency is incapable of producing normal amounts of immunoglobulin A, meaning that the celiac blood tests would show false negative results. The reason I ask if you were tested is because (similar to LC/CC/MC) celiac disease is strongly associated with both diabetes melitus and hypothyroidism. The fact that you were diagnosed with hypothyroidism at such a young age is very strong evidence of possible lifelong gluten sensitivity, and the symptoms you describe (urgency) certainly correlate with that possibility. IOW, it's possible that you have had asymptomatic celiac disease all these years.
Has your doctor (PCP) done a baseline bone mineral density test? I would highly recommend doing that, because untreated gluten sensitivity is the primary cause of osteoporosis, and even though your doctor probably considers you too young to have osteoporosis, if you have been gluten-sensitive from birth, it's possible that you may have already lost some bone density. And even if no damage has occurred, a baseline scan now can provide very helpful data, later in life.
With any luck at all, careful attention to your diet will enable you to get your life back, and you will soon not only be able to enjoy sharing more of your kids' lives, but you should be able to finish that PhD, too.
Recovery is virtually never smooth. It often seems to be a pattern of 2 steps forward, and 1 step back. But even if things don't seem to be going well, if we look at our condition in comparison with a month ago, it's much easier to see that we are making progress. It takes a while to heal the gut, because for most of us, the damage has been accumulating for years before we realize what has happened, and we begin to take steps to get our health back on track.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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rachdemots
- Little Blue Penguin
- Posts: 27
- Joined: Wed Oct 16, 2013 7:20 pm
No, my doctor does not advocate any diet changes. I basically got that from this website that said gluten, eggs, dairy and soy were the most offending. I had been messing around with my diet the last year or so trying to cut out certain things to see if it made me feel better, but never really sticking with it long enough. Once I got the diagnosis though, I took more of a plunge. I have been tested a few times for celiac but have come back negative and do not have IgA deficiency. So I think I am dealing with more of an intolerance (if anything) rather than full blown immune attack to gluten??
I also haven't had a bone mineral density test..I will ask about it. Both my mother and grandmother have/had osteoporosis. I believe my mother also has MC (and she has hypothyroidism) but she refuses to deal with it. She drinks about a bottle of Kaopectate every other day and has for like 10 years..but she is one of those "hide your head in the sand" people when it comes to health problems...
Thanks Tex
I also haven't had a bone mineral density test..I will ask about it. Both my mother and grandmother have/had osteoporosis. I believe my mother also has MC (and she has hypothyroidism) but she refuses to deal with it. She drinks about a bottle of Kaopectate every other day and has for like 10 years..but she is one of those "hide your head in the sand" people when it comes to health problems...
Thanks Tex
NewdiagnosedinSD
Welcome Rachel.
I'm so sorry that you have been suffering for so long, but you have found the right place for help. Almost two years ago, I was also going 10 times a day and have hypothyroidism ( and IgA deficiency). Today, I go only once a day in the morning and have my life back. There is a way back to feeling better. it just takes time, consistency with diet, and patience. You are on the right track by taking the bull by the horns and going G,D,S, and E free ( I never had to give up eggs). These are all foods that , if you are intolerant to, can produce too many antibodies = INFLAMMATION. if you want to know for sure, there is a lab in Texas called Enterolab ( look them up) that you would send a stool sample to to get antibody levels tested. The results are pretty conclusive.
To speed up your healing, you should also consider taking out all fiber from your diet for now. RAW FRUITS AND VEGGIES, beans and legumes, salad....etc. An inflamed gut just can't break it down and it also causes more intestinal mucus. For some of us, coffee and caffeinated tea causes problems. You can test these foods back in when you are better.
The more simple you can make your diet at first, the faster you will heal. I was on Entocort for a total of six months to enable me to work while the diet healed. It must be tapered slowly and it seems most of us need it at least 4 months.
Tex is an expert, and he has written a book that is a great resource. Just click on the picture in the upper right hand corner of this page to go straight to Amazon.
You have taken the first steps to getting better!
Take Care and keep us posted on your progress. We are all here to support and help each other
leah
I'm so sorry that you have been suffering for so long, but you have found the right place for help. Almost two years ago, I was also going 10 times a day and have hypothyroidism ( and IgA deficiency). Today, I go only once a day in the morning and have my life back. There is a way back to feeling better. it just takes time, consistency with diet, and patience. You are on the right track by taking the bull by the horns and going G,D,S, and E free ( I never had to give up eggs). These are all foods that , if you are intolerant to, can produce too many antibodies = INFLAMMATION. if you want to know for sure, there is a lab in Texas called Enterolab ( look them up) that you would send a stool sample to to get antibody levels tested. The results are pretty conclusive.
To speed up your healing, you should also consider taking out all fiber from your diet for now. RAW FRUITS AND VEGGIES, beans and legumes, salad....etc. An inflamed gut just can't break it down and it also causes more intestinal mucus. For some of us, coffee and caffeinated tea causes problems. You can test these foods back in when you are better.
The more simple you can make your diet at first, the faster you will heal. I was on Entocort for a total of six months to enable me to work while the diet healed. It must be tapered slowly and it seems most of us need it at least 4 months.
Tex is an expert, and he has written a book that is a great resource. Just click on the picture in the upper right hand corner of this page to go straight to Amazon.
You have taken the first steps to getting better!
Take Care and keep us posted on your progress. We are all here to support and help each other
leah
Welcome Rachel!
I too had terrible low back and deep hip pains when I developed MC, and for years earlier when I had so-called IBS. Going gluten and dairy free completely cleared up those pains. In fact, if I get accidentally glutened, I wake up the next day with the deep hip-flexor pains. It's weird. My rhuematologist tested me for the HLA B-27 gene that predisposes to ankylosing spondylitis, which causes autoimmune inflammation and degeneration of the lower spine. Luckily I was negative. You might want to look into this possibility.
I too had terrible low back and deep hip pains when I developed MC, and for years earlier when I had so-called IBS. Going gluten and dairy free completely cleared up those pains. In fact, if I get accidentally glutened, I wake up the next day with the deep hip-flexor pains. It's weird. My rhuematologist tested me for the HLA B-27 gene that predisposes to ankylosing spondylitis, which causes autoimmune inflammation and degeneration of the lower spine. Luckily I was negative. You might want to look into this possibility.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone