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Hi all,
I'm new here - been browsing for a week or so but this is my first post. I've been GF and sugar-free almost three months and mostly DF almost two - unfortunately a couple of weeks ago I discovered the vitamin powder my nutritionist recommended was almost half milk protein so felt like I was starting over. I'm trying to be super-strict about eating nothing with any gluten or dairy at all, and reading labels on everything (only missed the vitamins because my nutritionist recommended them so I figured they were safe).
I was diagnosed with MC about a month ago. I've been dealing with it for years but it has continued to get worse until around Thanksgiving I got desperate and decided I had to do something drastic. My Dr recommended Pepto, which I took but it caused significant tinnitus so I had to drop it.
I'm getting some minor improvement - I've gone from severe watery D maybe 10 times a day or more to somewhat more solid but still nowhere near right, and only maybe 5-6 times a day. But it's a bit discouraging that it's this slow - and it's hard to even be sure what I'm reacting to when I'm so bad so much of the time. I can't really afford the Enterolab testing right now. I've dropped to 102 pounds, so can't really cut calories much.
So my first question is, what would you experienced folks (especially those who have achieved remission) recommend at this point? Just stay the course and be patient? Cut out soy? Cut out soy plus - and if so, what else?
And my second question is, how common is a false negative blood test for CD? I've seen some references to that possibility here and just found myself wondering. I don't know that it matters much, but I wondered.
Thanks for the help - this board is a lifesaver!
New member intro
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Welcome!
I see your from CO? A friend of mine who lives there who has celiac always brags to me about how you guys have so many amazing GF restaurants, Im jealous!
I would cut out soy if I were you. Diet plays a huge role in all of this for us. When you find out which foods are causing you problems you will start to feel better. A few of us also rely on rx medicine to keep the inflamation under control. I know others on this board will be very helpful to you and willing to answer the questions you may have. WELCOME!
Jenny
I see your from CO? A friend of mine who lives there who has celiac always brags to me about how you guys have so many amazing GF restaurants, Im jealous!
I would cut out soy if I were you. Diet plays a huge role in all of this for us. When you find out which foods are causing you problems you will start to feel better. A few of us also rely on rx medicine to keep the inflamation under control. I know others on this board will be very helpful to you and willing to answer the questions you may have. WELCOME!
Jenny
and yes, it can be quite a slow process (some are luckier than others with that) and it's also a trial and error situation in many cases. You do have to be patient and hang in there. You have already seen some improvement even though it is not what you want. I am impatient in that regard also but you have to accept it. A medication MAY give faster results but you still have to change your diet if you want it to last or stay on the med forever (or as long as it keeps working). I'm not trying to discourage you but let you know that patience and dillegence are important. Would you be able to go on an elimination diet or does your lifestyle make that impossible. That is discussed in other areas of the board. http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
Welcome again, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Deanna,
Welcome to our internet family. Whether or not to eliminate soy from your diet is a tough call. Soy is in most processed foods, especially in the form of soy lecithin and soy oil, both of which the experts say shouldn't be a problem, but contrary to their claim, they cause those of us who are sensitive to soy, to react. Statistically, about half of us are sensitive to soy. Our recovery times are all different, of course, but most of us see some improvement within several months, (similar to what you've seen), and complete remission usually takes from 6 months to a year, (unless we take Entocort, or one of the 5-ASA medications, to stop the symptoms sooner).
One of the important dietary changes is to minimize fiber, and sugar, (as you are doing), and this cuts out virtually all fruits, (because of the fructose and high fiber content). Vegetables should be eaten in minimal amounts, and overcooked. If you can't resist eating any fruit, be sure that it's peeled and overcooked, (except for bananas, of course - many of us find that we can tolerate bananas OK).
You may just need more time, but if I were in your shoes, and I didn't see more improvement within another few weeks, I believe I would try eliminating soy, also, (at least for a couple of weeks).
If you are a resident of Colorado, you have available to you one of the best qualified gastroenterologists in the world, for treating this disease, IMO:
Dr. Scot Lewey (The Food Doc)
Gastroenterology Associates of Colorado Springs
Colorado Springs, Co
(719)387-2127
Note: Dr. Lewey will only accept residents of the state of Colorado as patients
http://www.gacsonline.com/physicians-nps/dr-lewey
http://www.thefooddoc.com/index.html
I'm not suggesting that you need to see him, I just wanted you to be aware of him, in case you should feel the need for his services somewhere down the road. He is one of only a handful of GI specialists in this country who are qualified to deal with mast cell issues associated with MC, for example.
Regarding the celiac blood tests, you can typically expect to receive a negative result on the classic celiac blood tests. They are so insensitive that they will only detect fully-developed celiac disease. That's why it still takes most celiacs an average of almost 10 years to receive a diagnosis of CD. They have to be sick for many years, so that the damage to the lining of their small intestine is severe, before the tests will detect the disease. The medical community desperately needs to figure out a way to diagnose celiac disease, because what they are doing, doesn't work worth a hoot. They currently successfully diagnose about 1 case in 20.
Virtually every member of this board, except for those of us who also have celiac disease, (and a fair percentage of us do), will always test negative to those blood tests, even though we are just as sensitive to gluten as the average celiac. And many of us are much more sensitive than the average celiac.
Again , welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Whether or not to eliminate soy from your diet is a tough call. Soy is in most processed foods, especially in the form of soy lecithin and soy oil, both of which the experts say shouldn't be a problem, but contrary to their claim, they cause those of us who are sensitive to soy, to react. Statistically, about half of us are sensitive to soy. Our recovery times are all different, of course, but most of us see some improvement within several months, (similar to what you've seen), and complete remission usually takes from 6 months to a year, (unless we take Entocort, or one of the 5-ASA medications, to stop the symptoms sooner).
One of the important dietary changes is to minimize fiber, and sugar, (as you are doing), and this cuts out virtually all fruits, (because of the fructose and high fiber content). Vegetables should be eaten in minimal amounts, and overcooked. If you can't resist eating any fruit, be sure that it's peeled and overcooked, (except for bananas, of course - many of us find that we can tolerate bananas OK).
You may just need more time, but if I were in your shoes, and I didn't see more improvement within another few weeks, I believe I would try eliminating soy, also, (at least for a couple of weeks).
If you are a resident of Colorado, you have available to you one of the best qualified gastroenterologists in the world, for treating this disease, IMO:
Dr. Scot Lewey (The Food Doc)
Gastroenterology Associates of Colorado Springs
Colorado Springs, Co
(719)387-2127
Note: Dr. Lewey will only accept residents of the state of Colorado as patients
http://www.gacsonline.com/physicians-nps/dr-lewey
http://www.thefooddoc.com/index.html
I'm not suggesting that you need to see him, I just wanted you to be aware of him, in case you should feel the need for his services somewhere down the road. He is one of only a handful of GI specialists in this country who are qualified to deal with mast cell issues associated with MC, for example.
Regarding the celiac blood tests, you can typically expect to receive a negative result on the classic celiac blood tests. They are so insensitive that they will only detect fully-developed celiac disease. That's why it still takes most celiacs an average of almost 10 years to receive a diagnosis of CD. They have to be sick for many years, so that the damage to the lining of their small intestine is severe, before the tests will detect the disease. The medical community desperately needs to figure out a way to diagnose celiac disease, because what they are doing, doesn't work worth a hoot. They currently successfully diagnose about 1 case in 20.
Virtually every member of this board, except for those of us who also have celiac disease, (and a fair percentage of us do), will always test negative to those blood tests, even though we are just as sensitive to gluten as the average celiac. And many of us are much more sensitive than the average celiac.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.
Hi I'm new also
Hi Deanna. I'm also new to this disease and this forum. It's so helpful to read all of what is written on this site, but it also can be depressing sometimes. When I think of a life without gluten, dairy, soy, raw vegetables, sugar... and maybe more, well you know- it can get you down. It does for me. On the other hand, knowledge is power. I am thinking of asking my doctor if I can try the entocort for a while. My thoughts are if I clean up my diet ( which I haven't really done very well) while I'm on the meds, things will "calm down" and then I can try to ween off the drug.
Anyway, I hope that you find the answers. We all know what you are going through and just that fact makes it a great place to go to get support. good luck
Anyway, I hope that you find the answers. We all know what you are going through and just that fact makes it a great place to go to get support. good luck
Leah,
FYI, avoiding raw vegetables, sugar, etc., is only a temporary part of the treatment. After we are in remission, and our intestines have had some time to heal, we can usually slowly reintroduce such foods back into our diet, because they don't cause an autoimmune reaction - they only irritate the gut while it is already inflamed. We do have to continue to avoid the foods that we are truly sensitive to, though, such as gluten, casein, soy, etc., (if we produce antibodies to them).
Tex
FYI, avoiding raw vegetables, sugar, etc., is only a temporary part of the treatment. After we are in remission, and our intestines have had some time to heal, we can usually slowly reintroduce such foods back into our diet, because they don't cause an autoimmune reaction - they only irritate the gut while it is already inflamed. We do have to continue to avoid the foods that we are truly sensitive to, though, such as gluten, casein, soy, etc., (if we produce antibodies to 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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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi Deanna (and Hi Leah)
the sucky part of this condition is that time and patience is the key to remission. there is no quick way or guaranteed solution.
the other crappy part (pun intended) is that even though the symptoms are common, the triggers and how badly someone reacts to ingredients/meds etc is very different.
there are some that gluten is not an issue at all. For me Soy causes a worse reaction than gluten. There is no black and white as to what will work for all ... so my tag line is
there is no right way or wrong way, there is your way...
you have to figure out a MC management that works for you, for your budget, and your lifestyle.
at the time of Dx I couldnt afford the testing, so I did the elmination diet to figure out my main triggers ingredients. Within 9 months i had identified that Gluten, Yeast, Soy, Lactose was an issue for me, plus a range of other other ingredients (vegetables etc) that either worked or didnt . I focussed on eating foods that were low inflammation and would also heal the leaky gut issues.
I have an eating plan that works for me for me (budget and work requirements) yes it is a small amount of ingredients but as time goes on you appreciate wellness so much you dont miss things like pizza.
in under 2 years from Dx, i got the MC into remission. So with focus, patience, diligence you can get your life back and have days and weeks without any D.
Pre Dx i had been using natural therapy for over 10 years (naturpaths supplements, acupuncture, etc) post Dx one thing that all my practitioners noticed is that all the normal things they do for people with IBS dont work for MC. our bodies can be super sensitive to change, treatments, new supplements. Everything we do, we introduce slowly and dont try to quick fix issues
This main message board part it is our 'vent room' so some of the posts might be overwhelming to a newbie, spend some time in the success stories area and you will see that the sacrifices and changes made by others are definately worth it
good luck absorbing all the info and lingo, it is a great bunch of people and feel free to ask questions... the other key to success is knowledge.
take care
the sucky part of this condition is that time and patience is the key to remission. there is no quick way or guaranteed solution.
the other crappy part (pun intended) is that even though the symptoms are common, the triggers and how badly someone reacts to ingredients/meds etc is very different.
there are some that gluten is not an issue at all. For me Soy causes a worse reaction than gluten. There is no black and white as to what will work for all ... so my tag line is
there is no right way or wrong way, there is your way...
you have to figure out a MC management that works for you, for your budget, and your lifestyle.
at the time of Dx I couldnt afford the testing, so I did the elmination diet to figure out my main triggers ingredients. Within 9 months i had identified that Gluten, Yeast, Soy, Lactose was an issue for me, plus a range of other other ingredients (vegetables etc) that either worked or didnt . I focussed on eating foods that were low inflammation and would also heal the leaky gut issues.
I have an eating plan that works for me for me (budget and work requirements) yes it is a small amount of ingredients but as time goes on you appreciate wellness so much you dont miss things like pizza.
in under 2 years from Dx, i got the MC into remission. So with focus, patience, diligence you can get your life back and have days and weeks without any D.
Pre Dx i had been using natural therapy for over 10 years (naturpaths supplements, acupuncture, etc) post Dx one thing that all my practitioners noticed is that all the normal things they do for people with IBS dont work for MC. our bodies can be super sensitive to change, treatments, new supplements. Everything we do, we introduce slowly and dont try to quick fix issues
This main message board part it is our 'vent room' so some of the posts might be overwhelming to a newbie, spend some time in the success stories area and you will see that the sacrifices and changes made by others are definately worth it
good luck absorbing all the info and lingo, it is a great bunch of people and feel free to ask questions... the other key to success is knowledge.
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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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Thank you all. . .
for the warm welcome and encouraging words! There's definitely a mixed bag of emotions that arises in reading this forum at first. First there's amazement at how many of us there are, considering if you're like me you'd probably never even heard of it until after you got sick. Then there's the overwhelming sense of discouragement as you realize a) no matter how carefully you ate to this point, you've been poisoning yourself, and b) your whole lifestyle is about to change dramatically, probably forever. At the same time, at least in my case, there's a certain amount of hopefulness - with that lifestyle change, we might be able to get into remission and stay there most of the time.
OK, so here's my next question: Tex, you mentioned that we need to limit fiber and sugar. Is there a difference, with MC, between soluble and insoluble fiber? Suspecting that MC and IBS might be related, I recently read part of Eating for IBS, wondering if that might have anything that would help me. She makes the case that soluble fiber is very different from insoluble fiber, and that soluble is not only acceptable but absolutely necessary for IBS sufferers. Given that most soluble fiber comes from grain, of course, that complicates things for us - but what about rice, potatoes, and psyllium fiber? I've been taking psyllium for a couple of months, and I've thought maybe it was helping a little, but I could be wrong. What's your experience?
Thanks!
OK, so here's my next question: Tex, you mentioned that we need to limit fiber and sugar. Is there a difference, with MC, between soluble and insoluble fiber? Suspecting that MC and IBS might be related, I recently read part of Eating for IBS, wondering if that might have anything that would help me. She makes the case that soluble fiber is very different from insoluble fiber, and that soluble is not only acceptable but absolutely necessary for IBS sufferers. Given that most soluble fiber comes from grain, of course, that complicates things for us - but what about rice, potatoes, and psyllium fiber? I've been taking psyllium for a couple of months, and I've thought maybe it was helping a little, but I could be wrong. What's your experience?
Thanks!
Yes, insoluble fiber is worse than soluble fiber, but for someone with MC, eating soluble fiber is like choosing to eat fine sandpaper, rather than coarse sandpaper - it amounts to a lower source of irritation. But why irritate your gut at all? Our digestive systems evolved in the paleo era, and most paleo people ate far less fiber than most current diet recommendations, (in fact, they ate, on the average, less than a third of the current recommendations). Cows need a certain amount of fiber, because they're ruminants. Humans are not ruminants - we're monogastric, like pigs, for example, and pigs don't need very much fiber in their diet, as any hog farmer can tell you. In fact, many of the digestive system components of pigs are surgically interchangeable with human parts, believe it or not. If fiber is so helpful, why do so many people have "IBS". (Actually, "IBS" does not even exist, but let's not get into that right now - I don't have time to explain it. 
.
I'm not a doctor, but IMO, if you're eating psyllium, it may very well be the reason why you haven't seen more improvement in your symptoms. Please read the following blog article by Dr. Eades - he agrees with me that fiber is not our friend, (and he's not even considering MC - he's talking about everyone).
http://www.proteinpower.com/drmike/fibe ... e-and-aft/
I don't consider the fiber in foods such as white rice and potatoes to be a problem. By contrast, (again IMO), the fiber in brown rice, and fiber supplements such as psyllium are contraindicated for anyone with MC.
Tex
.I'm not a doctor, but IMO, if you're eating psyllium, it may very well be the reason why you haven't seen more improvement in your symptoms. Please read the following blog article by Dr. Eades - he agrees with me that fiber is not our friend, (and he's not even considering MC - he's talking about everyone).
http://www.proteinpower.com/drmike/fibe ... e-and-aft/
I don't consider the fiber in foods such as white rice and potatoes to be a problem. By contrast, (again IMO), the fiber in brown rice, and fiber supplements such as psyllium are contraindicated for anyone with MC.
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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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Thanks, Tex!
I will definitely try taking the psyllium out. Apparently a lot of people with chronic D are helped by taking psyllium - but I don't know whether it's helped me or not. It was my understanding that psyllium turned to a gel when it absorbed water (which of course it does in our gut, especially for those of us with chronic D), and was soothing and healing rather than irritating - but I'm very new to the nutritional approach and especially to MC so I'm sure I'm making mistakes. I'm not that attached to taking it, anyway.
I'm going to do some reading on the natural treatments forum before I ask about the other vitamins and supplements I'm taking.. :-)
I'm going to do some reading on the natural treatments forum before I ask about the other vitamins and supplements I'm taking.. :-)
That's true, but that doesn't make it less abrasive. Fiber actually physically tears the cells in the mucosa of the gut, in order to stimulate the production of mucus. During an MC flare, copious amounts of mucus are produced by the mucosa, in an effort to protect itself form further physical damage. It doesn't need any additional damage, and it doesn't need any additional damaged cells to replace - it can't keep up with the demand for replacing damaged cells as it is.Deanna wrote:It was my understanding that psyllium turned to a gel when it absorbed water
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.
Hi Leah,
I am an example of another face of this disease. My MC is constipation (C) dominated. I never know what is causing what reaction. I have to take multiple laxatives to get my bowel moving at all, and, so far, I haven't had a normal one yet.
Also I have very serious GERD (in a fight with my GI about further testing) and have to keep sucking something to stimulate my salivary glands. I can't do chewing gum because the sorbitol causes those rumbles and distension, so I suck on rock candy (at least it's pure!).
I have been struggling for about 7-8 months now, and sometimes feel I am no closer to reaching resolution.
However, the enterolab testing gave me invaluable information, and I am hoping the MRT will give me more to work with. No, I can't really afford it, but after struggling for so long and now knowing what is going to help, I have to try to pin point so I can begin to heal.
Many people have it easier than I have. I hope you do too.
I am an example of another face of this disease. My MC is constipation (C) dominated. I never know what is causing what reaction. I have to take multiple laxatives to get my bowel moving at all, and, so far, I haven't had a normal one yet.
Also I have very serious GERD (in a fight with my GI about further testing) and have to keep sucking something to stimulate my salivary glands. I can't do chewing gum because the sorbitol causes those rumbles and distension, so I suck on rock candy (at least it's pure!).
I have been struggling for about 7-8 months now, and sometimes feel I am no closer to reaching resolution.
However, the enterolab testing gave me invaluable information, and I am hoping the MRT will give me more to work with. No, I can't really afford it, but after struggling for so long and now knowing what is going to help, I have to try to pin point so I can begin to heal.
Many people have it easier than I have. I hope you do too.
better
Hi Lesley.
I have been reading your posts and I have to say that you have it much worse than I do. I have watery D all the time, but the number of times I go a day changes. I don't have any other symptoms that I can tell ( maybe I'm a bit more tired). I will probably pay for the Enterolab test also because I just can't get a grip on what is making this worse or better.
Thanks for writing to me and I truly hope your journey gets better in the NEAR future.
I have been reading your posts and I have to say that you have it much worse than I do. I have watery D all the time, but the number of times I go a day changes. I don't have any other symptoms that I can tell ( maybe I'm a bit more tired). I will probably pay for the Enterolab test also because I just can't get a grip on what is making this worse or better.
Thanks for writing to me and I truly hope your journey gets better in the NEAR future.
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado