Another newbie
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Hooliebell
- Posts: 4
- Joined: Sun Mar 23, 2014 9:55 am
Another newbie
Was just diagnosed about two weeks ago with MC. Had norovirus day after Xmas and then the daily D started up about a week later. Suffered through it for a road trip to Florida which included lots of golf. Luckily most of the BMW were in the AM and Imodium protected me on the golf course. Came back from trip and did the doctor appointments, colonoscopy, and endoscopy. Dr.has me on the 8 peptol bismol tablets for 8 weeks. Still have soft stool but gas pains aren't as bad. I asked doc about diet restrictions and he said there were none. But after reading everything on this website sounds like I'm going to have to do something about the diet. But my concern is if I eliminate gluten and dairy, and I get better, how am I going to know if it's the diet that is working or the pepto bismol? If I totally go the elimination diet route, are there any recommendations for a specific elimination diet? There are many variations out there on the web. Mind boggling on where to start. Or should I just go Paleo and see if that works? Thanks for this awesome website and for any feedback you send my way.
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
I'm sure you will get a more thorough and cogent response from others but here is my experience.
The pepto may stop the D for a while but if you don't find out what is causing the D, and remove that cause, it will return. Something triggered your MC and food is definitely a very big factor in how well you will heal. Most GI docs haven't got a clue about the connection between MC and diet.
Entero lab tests will tell you whether you are sensitive to gluten, dairy, soy etc etc etc. Having that basis to work with, it is easier to get a handle on a diet that won't work against healing. MC is a complicated disease and it isn't easy to fix for most of us. I got sick almost 5 years ago, stopped gluten 3+ years ago, had the Enterolab tests 2 years ago and discovered my other intolelrances. I still had WD despite a very restricted diet. I was prescribed Entocort (budesinide), a steroid, and took that for almost two years. Entocort stopped the WD immediately, the very first day. Now I've weaned off the Entocort and am struggling with a very restricted diet and recurrent D. I'm a lot better than I was but it is still a struggle. I hope you have a better experience and heal quickly.
Sheila W
The pepto may stop the D for a while but if you don't find out what is causing the D, and remove that cause, it will return. Something triggered your MC and food is definitely a very big factor in how well you will heal. Most GI docs haven't got a clue about the connection between MC and diet.
Entero lab tests will tell you whether you are sensitive to gluten, dairy, soy etc etc etc. Having that basis to work with, it is easier to get a handle on a diet that won't work against healing. MC is a complicated disease and it isn't easy to fix for most of us. I got sick almost 5 years ago, stopped gluten 3+ years ago, had the Enterolab tests 2 years ago and discovered my other intolelrances. I still had WD despite a very restricted diet. I was prescribed Entocort (budesinide), a steroid, and took that for almost two years. Entocort stopped the WD immediately, the very first day. Now I've weaned off the Entocort and am struggling with a very restricted diet and recurrent D. I'm a lot better than I was but it is still a struggle. I hope you have a better experience and heal quickly.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Welcome to the forum.
Sheila is right about the Pepto only being temporary if you don't remove the foods that are causing the inflammation. When the MC gene is triggered, so are food sensitivities. There are the four main ones ( gluten, dairy,soy, and eggs). Then there are many foods that aggravate the intestines while you are trying to heal them ( like acid foods, fiber foods like beans, legumes, and RAW fruits and veggies. Caffeine can be a problem, too much sugar, artificial sweeteners…etc.)
Most of us must take gluten and dairy out. If after your Pepto treatment, you are still having D, then you must look deeper. The best way to do an elimination diet is to take all the possible offenders out WHILE you calm things down with the Pepto and allow some healing. THEN, test things back in. Each test should be for three days before being pretty sure that item doesn't give you problems. It took me 6 months to even reach that phase.
This is not a quick fix. And we are never cured, but we can get enough healing under our belts to live a fairly normal life once we know our diet.
After 2 years, I am down to taking OTC antihistamines and being gluten, dairy, and soy free. I only have one BM a day and have been able to add many things back in. I can even eat spicy foods now! It takes patience and determination to do this right.
We are all different. Some of us have had a harder time then other. Some people find they can't eat any grains at all. Some can't eat chicken, some nuts.
The key is to feel as good as possible as quickly as possible. that means eating a very basic diet for a while. For most of us, that means proteins, a few select very cooked veggies, and maybe white rice and it's products, and for some- potato. Sweet potato is best.
You might want to order Tex's book. It can explain this disease very clearly and is full of info. Just click on the picture in the upper right hand corner and it will take you to Amazon.
Doctors ( most) are clueless about the food/MC connection, but believe us, IT'S A REAL ONE!
We are all here for you. Ask any questions and we will try to help.
Good luck
Leah
Sheila is right about the Pepto only being temporary if you don't remove the foods that are causing the inflammation. When the MC gene is triggered, so are food sensitivities. There are the four main ones ( gluten, dairy,soy, and eggs). Then there are many foods that aggravate the intestines while you are trying to heal them ( like acid foods, fiber foods like beans, legumes, and RAW fruits and veggies. Caffeine can be a problem, too much sugar, artificial sweeteners…etc.)
Most of us must take gluten and dairy out. If after your Pepto treatment, you are still having D, then you must look deeper. The best way to do an elimination diet is to take all the possible offenders out WHILE you calm things down with the Pepto and allow some healing. THEN, test things back in. Each test should be for three days before being pretty sure that item doesn't give you problems. It took me 6 months to even reach that phase.
This is not a quick fix. And we are never cured, but we can get enough healing under our belts to live a fairly normal life once we know our diet.
After 2 years, I am down to taking OTC antihistamines and being gluten, dairy, and soy free. I only have one BM a day and have been able to add many things back in. I can even eat spicy foods now! It takes patience and determination to do this right.
We are all different. Some of us have had a harder time then other. Some people find they can't eat any grains at all. Some can't eat chicken, some nuts.
The key is to feel as good as possible as quickly as possible. that means eating a very basic diet for a while. For most of us, that means proteins, a few select very cooked veggies, and maybe white rice and it's products, and for some- potato. Sweet potato is best.
You might want to order Tex's book. It can explain this disease very clearly and is full of info. Just click on the picture in the upper right hand corner and it will take you to Amazon.
Doctors ( most) are clueless about the food/MC connection, but believe us, IT'S A REAL ONE!
We are all here for you. Ask any questions and we will try to help.
Good luck
Leah
Welcome to our internet family. Sheila and Leah have already provided a lot of good information, so I'll just try to answer a couple of your questions from the quote above.Hooliebell wrote:If I totally go the elimination diet route, are there any recommendations for a specific elimination diet? There are many variations out there on the web. Mind boggling on where to start. Or should I just go Paleo and see if that works?
There's some information on elimination diets on this forum at the link below. Most members find that it's faster and more practical to order stool tests from EnteroLab, because selecting the proper foods for the elimination diet is not always easy or straightforward for some of us. IOW, some of us react to the foods that are commonly suggested as the basis of an elimination diet. And of course, trial and error testing of foods won't work if the elimination diet doesn't work, because if we are already reacting, then we can't tell if we are reacting to a test food, or to our existing diet.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
The paleo diet will work for most of us, but not necessarily while we are still reacting. While we're reacting, we have to minimize fiber, and since some people seem to believe that the paleo diet should be a high-fiber diet, large amounts of fruits and vegetables (especially raw fruits and vegetables) will not work very well. IOW, during recovery, we have to avoid large amounts of most fruits and vegetables, and any that are eaten should be peeled and overcooked (no raw fruits or vegetables, except for bananas — if you can tolerate bananas).
Since significant amounts of sugar can cause problems, we have to limit fruits (fructose especially, is a problem) not only because of the fiber, but because of the sugar, as well. That also applies to fruit juices — fruit juices are very high in sugar content. They contain at least as much sugar as sugary soft drinks. After we are in remission, and we allow a reasonable amount of time for our gut to heal, then most of us can tolerate raw fruits and vegetables again, and in larger amounts.
Those who order EnteroLab tests usually order Panel A and (if they can justify the added cost) Panel C. Please be aware that if you should happen to have selective IgA deficiency (as Leah does), then neither the EnteroLab stool tests, nor the celiac blood tests used by most doctors for screening for celiac disease, will provide reliable results. IOW, those tests may yield false negative results for anyone who is IgA deficient. Your PCP can provide a simple blood test that will verify whether or not you have selective IgA deficiency, if you should want to check that out before spending any money on tests.
Approximately 1 person in 500 in the general population has selective IgA deficiency, but those odds increase to about 1 in 300 for those of us who are sensitive to gluten (and all but a handful of us are).
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.