Hi! I am Susan from Chattanooga, TN, and I am NEW HERE!
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Hi! I am Susan from Chattanooga, TN, and I am NEW HERE!
Hello,
Well, I'll try to make a long story longer, but I was just diagnosed with Lymphocytic Colitis (Microscopic Colitis). My journey began last year when I had a series of Urinary Tract Infections, which caused me to be placed on antibiotics. I took my several rounds of antibiotics and never gave it another thought. I did NOT know about probiotics at this point. In September of 2012, I began having diarrhea at the end of my round of these antibiotics.
The diarrhea caused TERRIBLE cramps and my stomach was so painful that no one could touch it. I went to my regular doctor, and they determined I was dehydrated and put me on two bags of saline in the office. Two days later, I was no better, so my husband took me to the emergency room on a Saturday. The docs ordered a CT scan, and it showed that my entire colon was infected, and they admitted me to the hospital. At this point, I had NO idea of the antibiotic connection. I stayed two nights, and I was visited by the gastro doc who told me that the antibiotic caused the entire event and wiped out all of the good bacteria in my colon as well as the bad. Needless to say, the UTI was gone.
However, I had two or three more UTIs after my hospital stay, and I had NO follow ups after the hospital. They said I was totally fine, and I would be fine in a couple of weeks. Also, I was negative for C-Diff, which was unusual, but I was grateful.
Then, in January of this year, I was put on another antibiotic for another UTI. This time, the doctor cultured the urine, and he placed me on an antibiotic which matched the type of bacteria causing the UTIs. So far, no more UTI's.
BUT, in mid-January, I began to have diarrhea again. I went to my regular doctor and to my gynecologist who did a stool test to rule out C-Diff. It was negative.
The diarrhea continued for over six weeks, and I finally went to the gastro doc who had performed my routine colonoscopy nine-months before. She saw me immediately, and she wanted to rule out ulcerative or inflammatory colitis, so I had another colonoscopy the very next day.
The results were Microscopic Colitis, and her office called me three times to assure me that this was NOT a CHRONIC disease, and that I could resume a normal diet. They want to see me again in April.
They prescribed me chewable Pepto Bismal and probiotics...that's it. It's now been two weeks, and the diarrhea is BETTER, but it's not gone. I've had a few days were I believed it was ALMOST gone.
Now, I have to worry whether this really is a CHRONIC disease or just one that flares up occasionally. Plus, I guess I need to start figuring out what I can eat and what I can't eat. That seems like a HUGE thing to figure out.
Just wondering...is it CHRONIC, or not. I also called a close friend of mine who works for a gastro doctor and SHE ASSURED me it was NOT chronic, although it can flair up from time-to-time.
What to do? I still have diarrhea.
Thanks for listening,
Susan P
Well, I'll try to make a long story longer, but I was just diagnosed with Lymphocytic Colitis (Microscopic Colitis). My journey began last year when I had a series of Urinary Tract Infections, which caused me to be placed on antibiotics. I took my several rounds of antibiotics and never gave it another thought. I did NOT know about probiotics at this point. In September of 2012, I began having diarrhea at the end of my round of these antibiotics.
The diarrhea caused TERRIBLE cramps and my stomach was so painful that no one could touch it. I went to my regular doctor, and they determined I was dehydrated and put me on two bags of saline in the office. Two days later, I was no better, so my husband took me to the emergency room on a Saturday. The docs ordered a CT scan, and it showed that my entire colon was infected, and they admitted me to the hospital. At this point, I had NO idea of the antibiotic connection. I stayed two nights, and I was visited by the gastro doc who told me that the antibiotic caused the entire event and wiped out all of the good bacteria in my colon as well as the bad. Needless to say, the UTI was gone.
However, I had two or three more UTIs after my hospital stay, and I had NO follow ups after the hospital. They said I was totally fine, and I would be fine in a couple of weeks. Also, I was negative for C-Diff, which was unusual, but I was grateful.
Then, in January of this year, I was put on another antibiotic for another UTI. This time, the doctor cultured the urine, and he placed me on an antibiotic which matched the type of bacteria causing the UTIs. So far, no more UTI's.
BUT, in mid-January, I began to have diarrhea again. I went to my regular doctor and to my gynecologist who did a stool test to rule out C-Diff. It was negative.
The diarrhea continued for over six weeks, and I finally went to the gastro doc who had performed my routine colonoscopy nine-months before. She saw me immediately, and she wanted to rule out ulcerative or inflammatory colitis, so I had another colonoscopy the very next day.
The results were Microscopic Colitis, and her office called me three times to assure me that this was NOT a CHRONIC disease, and that I could resume a normal diet. They want to see me again in April.
They prescribed me chewable Pepto Bismal and probiotics...that's it. It's now been two weeks, and the diarrhea is BETTER, but it's not gone. I've had a few days were I believed it was ALMOST gone.
Now, I have to worry whether this really is a CHRONIC disease or just one that flares up occasionally. Plus, I guess I need to start figuring out what I can eat and what I can't eat. That seems like a HUGE thing to figure out.
Just wondering...is it CHRONIC, or not. I also called a close friend of mine who works for a gastro doctor and SHE ASSURED me it was NOT chronic, although it can flair up from time-to-time.
What to do? I still have diarrhea.
Thanks for listening,
Susan P
Susan P
Welcome Susan. Wow, you have been on A LOT of antibiotics and that's most likely what triggered the MC. Microscopic Colitis is an autoimmune disease and you will have it for life... HOWEVER, you can get it to go into remission with the right diet... and you stick to the main aspects of that diet. Most doctors are clueless when it comes to this disease.
The four main inflammatory foods are gluten, dairy, soy, and eggs. The Mc seems to trigger food intolerances- unfortunately. Most of us must be gluten free. Many of us also must be dairy free. A smaller percentage of us have to also take soy and eggs. An elimination diet can work to figure this out, but it takes time for the gut to heal.
Also, while we are in a flair, it's wise to also take out all "irritant" foods like RAW fruits and veggies ( no salad), acid foods, beans and legumes, coffee perhaps and tea. You can test these foods one at a time back into your diet as you heal.
Most of us stick to a meat,broth, cooked veggie, rice based diet when we are in a flair. I also was able to eat corn tortillas and Chex cereals with almond milk, and apple sauce.
You didn't mention how much Pepto you are taking, but the protocol, I believe. is eight a day to start and then you wean down as your stools get formed. Three months tops. It can be toxic long term However, THIS WON'T CURE YOU. You need to find out what foods you are reacting to so you don't relapse.
If you want to know for sure about which foods you are reacting to, and can afford it, there is a lab called Enterolab ( look up their web site) that you send a stool sample to and then you will get definitive answers in about three weeks time. It's the only lab in the country who does this test.
There is a lot to learn, so try to read as much as you can from this site. Also Tex has written a book that is very helpful. It's in the upper right corner of this site. Just click on it.
Ask as many questions as you need, and try to wrap your head around the fact that this is a process that takes time, but you can get this under control.
Take Care
Leah
The four main inflammatory foods are gluten, dairy, soy, and eggs. The Mc seems to trigger food intolerances- unfortunately. Most of us must be gluten free. Many of us also must be dairy free. A smaller percentage of us have to also take soy and eggs. An elimination diet can work to figure this out, but it takes time for the gut to heal.
Also, while we are in a flair, it's wise to also take out all "irritant" foods like RAW fruits and veggies ( no salad), acid foods, beans and legumes, coffee perhaps and tea. You can test these foods one at a time back into your diet as you heal.
Most of us stick to a meat,broth, cooked veggie, rice based diet when we are in a flair. I also was able to eat corn tortillas and Chex cereals with almond milk, and apple sauce.
You didn't mention how much Pepto you are taking, but the protocol, I believe. is eight a day to start and then you wean down as your stools get formed. Three months tops. It can be toxic long term However, THIS WON'T CURE YOU. You need to find out what foods you are reacting to so you don't relapse.
If you want to know for sure about which foods you are reacting to, and can afford it, there is a lab called Enterolab ( look up their web site) that you send a stool sample to and then you will get definitive answers in about three weeks time. It's the only lab in the country who does this test.
There is a lot to learn, so try to read as much as you can from this site. Also Tex has written a book that is very helpful. It's in the upper right corner of this site. Just click on it.
Ask as many questions as you need, and try to wrap your head around the fact that this is a process that takes time, but you can get this under control.
Take Care
Leah
Leah, Thank You
Well, being new at this, my dentist AND my orthodontist say their colitis is caused by an auto-immune disease, but my doc says mine is contributed to being on the antibiotics. Is there a difference is the long run?
I can say that I LOVE my glass of milk for dinner every night, so I will eliminate it, but I will miss my milk. I'm so new that I'm not sure what "gluten" is, but I assume it is bread, etc. Do they sell gluten free bread?
Also, I know this is weird, but my dentist told me that BEER helped him. Could this be true? If so, YES! LOL!
I am just SO confused since my own doctor and a friend who works for another GI guy said that MI is NOT chronic. :(
Help me understand, if you can. I so appreciate your patience!
Susan
I can say that I LOVE my glass of milk for dinner every night, so I will eliminate it, but I will miss my milk. I'm so new that I'm not sure what "gluten" is, but I assume it is bread, etc. Do they sell gluten free bread?
Also, I know this is weird, but my dentist told me that BEER helped him. Could this be true? If so, YES! LOL!
I am just SO confused since my own doctor and a friend who works for another GI guy said that MI is NOT chronic. :(
Help me understand, if you can. I so appreciate your patience!
Susan
Susan P
Hi Susan,
So sorry you've got this nasty disease but we all know what you are going through. Leah has covered a lot with you so don't have too much to add. Your antibiotics definitely triggered your MC....no doubt about that one! You will always have it but you won't always have the chronic symptoms. Many have gone into remission including myself. I took 7 Peptos a day for 2 months then weaned myself off the 3rd month. I had already gone Gluten free and dairy free but still had some D. Now I've been med free for almost 2 months with absolutely no issues.
Probiotics are tricky but just make sure they don't contain lactose!
Just FYI....fiber is not our friend while our guts are inflamed. I've just now, after 7 months, have had to increase the fiber since I'm getting sluggish. I'm definitely healing. And you will too. Gluten free was easy for me but dairy free not so much. I do miss my milk but have gotten used to Almond milk and it's really great with Rice Chex. I do love Earth Balance soy free butter and use it every now and then. The best gf bread I've tried so far is Udi's. They have some awesome hamburger buns as well. But be careful of processed foods early on. I still eat lots of chicken/veggie/rice soup. It's very comforting. I do indulge in some GF corn/guinoa pasta which I think is pretty tasty. Lots of good GF options out there but try to stick with whole foods for now. And beware of whole nuts. I still haven't braved those yet!
It still amazes me how doctors think that we should continue with our normal diets!! Unbelievable. The only reason my GI doctor told me to give up gluten was because I have Celiac disease so "duh" right? Otherwise, he would have not mentioned anything about diet changes.
You learn patience with this disease and it's totally worth it. Like Leah has said once before, we have to play detectives with this disease to try to figure out what our bodies aren't tolerating. You will get better! Hang in there and please ask any questions you have and look over the forum...Gobs of information!!
Good luck! Hope the Pepto works for you! If not a lot on this forum have used Entocort.
BTW...gluten is in tons of stuff, breads, pastas, boxed rice mixes, some soups. Just check those labels. Even cornbread mix I used to make has wheat durham (sp) flour in it. It's also in meds and vitamins! It's really quite sad. Even in some spaghetti sauces, salad dressings, etc. Look at the list on this forum on what ingredients to look out for when it comes to gluten.
Terri
So sorry you've got this nasty disease but we all know what you are going through. Leah has covered a lot with you so don't have too much to add. Your antibiotics definitely triggered your MC....no doubt about that one! You will always have it but you won't always have the chronic symptoms. Many have gone into remission including myself. I took 7 Peptos a day for 2 months then weaned myself off the 3rd month. I had already gone Gluten free and dairy free but still had some D. Now I've been med free for almost 2 months with absolutely no issues.
Probiotics are tricky but just make sure they don't contain lactose!
Just FYI....fiber is not our friend while our guts are inflamed. I've just now, after 7 months, have had to increase the fiber since I'm getting sluggish. I'm definitely healing. And you will too. Gluten free was easy for me but dairy free not so much. I do miss my milk but have gotten used to Almond milk and it's really great with Rice Chex. I do love Earth Balance soy free butter and use it every now and then. The best gf bread I've tried so far is Udi's. They have some awesome hamburger buns as well. But be careful of processed foods early on. I still eat lots of chicken/veggie/rice soup. It's very comforting. I do indulge in some GF corn/guinoa pasta which I think is pretty tasty. Lots of good GF options out there but try to stick with whole foods for now. And beware of whole nuts. I still haven't braved those yet!
It still amazes me how doctors think that we should continue with our normal diets!! Unbelievable. The only reason my GI doctor told me to give up gluten was because I have Celiac disease so "duh" right? Otherwise, he would have not mentioned anything about diet changes.
You learn patience with this disease and it's totally worth it. Like Leah has said once before, we have to play detectives with this disease to try to figure out what our bodies aren't tolerating. You will get better! Hang in there and please ask any questions you have and look over the forum...Gobs of information!!
Good luck! Hope the Pepto works for you! If not a lot on this forum have used Entocort.
BTW...gluten is in tons of stuff, breads, pastas, boxed rice mixes, some soups. Just check those labels. Even cornbread mix I used to make has wheat durham (sp) flour in it. It's also in meds and vitamins! It's really quite sad. Even in some spaghetti sauces, salad dressings, etc. Look at the list on this forum on what ingredients to look out for when it comes to gluten.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Hi Susan, I was on antibiotics for five days for every dental visit and during a colonoscopy the biopsys were taken and I was dx with MC. I have learned to control it with diet and some supplements. I am gluten, refined sugar, diary and soy free. I take probiotics every day and a digestive emzyme with every large meal. Jon
I'm so Sad!
Hi all,
Thanks to everyone who have responded. I honestly believed my own doctor and my friend who worked for a different GI. They BOTH said my colitis was NOT chronic, although they did admit I could have flair ups.
I have lost 26 pounds, which doesn't hurt my feelings AT all. I am now at a GREAT size 8, and I love it, but this is NOT the way to go about it.
Chronic scares me. I believe I will begin with eliminating milk (which I love), and buy gluten-free bread. That's a start. I LOVE sweet tea, and it doesn't seem to bother me because some days, that's all I've had. I'm not a coffee drinker.
What about beer? My dentist SWEARS it helps him. LOL
I've been eating ONLY whole-wheat saltine crackers after I've had a day or two of diarrhea, but I suppose they have gluten in them, but they actually seem to help curb my diarrhea. Maybe because that's all I've eaten. I don't know.
As opposed to the original colitis I had when I was hospitalized in September, I have ZERO cramping, and ZERO stomach pain. I am starving. I could eat anything...in my hungry mind.
Anyway, I am SO grateful to have found you guys. I need support, education, encouragement, and prayer.
You'd like me...I'm funny...'cept for this crap (no pun intended).
Susan
Thanks to everyone who have responded. I honestly believed my own doctor and my friend who worked for a different GI. They BOTH said my colitis was NOT chronic, although they did admit I could have flair ups.
I have lost 26 pounds, which doesn't hurt my feelings AT all. I am now at a GREAT size 8, and I love it, but this is NOT the way to go about it.
Chronic scares me. I believe I will begin with eliminating milk (which I love), and buy gluten-free bread. That's a start. I LOVE sweet tea, and it doesn't seem to bother me because some days, that's all I've had. I'm not a coffee drinker.
What about beer? My dentist SWEARS it helps him. LOL
I've been eating ONLY whole-wheat saltine crackers after I've had a day or two of diarrhea, but I suppose they have gluten in them, but they actually seem to help curb my diarrhea. Maybe because that's all I've eaten. I don't know.
As opposed to the original colitis I had when I was hospitalized in September, I have ZERO cramping, and ZERO stomach pain. I am starving. I could eat anything...in my hungry mind.
Anyway, I am SO grateful to have found you guys. I need support, education, encouragement, and prayer.
You'd like me...I'm funny...'cept for this crap (no pun intended).
Susan
Susan P
Hi Susan..
Regular beer has gluten in it because of the barley malt they use it in..barley is a no no also! Sorry about that. They do make many gluten free beers..personal taste I guess but my favorite is Bards. Another great one is Omission from Oregon. I don't understand the particulars about it but apparently it is made with barley malt but they somehow use some sort of clarifying agent to make it gluten free (this according to my serious home brewer neighbor who made my celiac hubby a gluten free stout this way a few weeks ago and is making me a brown ale next week). My hubby reacts swiftly and wickedly to gluten and is fine with Omission and the abovementioned homebrewed stout.
Regular saltiness are out..rice crackers or some of the newer crackers made of blends of things are what you need to look for..
It gets better the more you learn...
HockeyMom
Regular beer has gluten in it because of the barley malt they use it in..barley is a no no also! Sorry about that. They do make many gluten free beers..personal taste I guess but my favorite is Bards. Another great one is Omission from Oregon. I don't understand the particulars about it but apparently it is made with barley malt but they somehow use some sort of clarifying agent to make it gluten free (this according to my serious home brewer neighbor who made my celiac hubby a gluten free stout this way a few weeks ago and is making me a brown ale next week). My hubby reacts swiftly and wickedly to gluten and is fine with Omission and the abovementioned homebrewed stout.
Regular saltiness are out..rice crackers or some of the newer crackers made of blends of things are what you need to look for..
It gets better the more you learn...
HockeyMom
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Hi Susan,
Welcome to our internet family. You've received some excellent advice from the other members who posted here before me, and I totally agree with everything they said.
Unfortunately, your doctors and friends working in the medical profession have been flummoxed by some of the earlier research articles written about microscopic colitis that reached incorrect conclusions, so the advice that they have given you about MC being a temporary or transient condition are incorrect. Many of us who are members of this board (including me), have been dealing with this disease for at least 10 or 12 years now, so I can assure you that it does not simply go away on its own, without intervention.
It's not impossible for someone who has the disease to have periods of spontaneous remission, and a few members here have experienced that, but they make up maybe 2 or 3 percent of the membership, at the most. IOW, the vast majority of us are not that lucky, and we have to maintain our treatment continuously, or the disease will quickly remind us of our foolish mistake.
The book that Leah mentioned describes the details of why the conclusions published in those old research articles are incorrect. Some gastroenterologists are aware of the mistakes, but many others are not. And the problem is that once a medical research article is published, no matter how incorrect the report might be, corrections are very rarely published, and when they are, virtually no one bothers to read them. As a result, those articles remain in the literature to corrupt the training of doctors for decades, unfortunately.
Incidentally, the medical researcher/gastroenterologist who developed the Pepto-Bismol treatment for MC, specified 8 Pepto tablets, or the equivalent, per day, for 8 weeks, in combination with the GF diet. He has the disease himself, so he knows from personal experience what works, and what doesn't work. He also developed the stool tests for determining food sensitivities, and he founded EnteroLab. Most doctors who recommend the treatment to their patients don't realize that the inflammation that causes MC is generated by food sensitivities, so they "forget" to advise their patients to follow the GF diet, and as a result, a few days to a week or so after they end the Pepto treatment, they suffer a relapse of symptoms.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. You've received some excellent advice from the other members who posted here before me, and I totally agree with everything they said.
Unfortunately, your doctors and friends working in the medical profession have been flummoxed by some of the earlier research articles written about microscopic colitis that reached incorrect conclusions, so the advice that they have given you about MC being a temporary or transient condition are incorrect. Many of us who are members of this board (including me), have been dealing with this disease for at least 10 or 12 years now, so I can assure you that it does not simply go away on its own, without intervention.
It's not impossible for someone who has the disease to have periods of spontaneous remission, and a few members here have experienced that, but they make up maybe 2 or 3 percent of the membership, at the most. IOW, the vast majority of us are not that lucky, and we have to maintain our treatment continuously, or the disease will quickly remind us of our foolish mistake.
The book that Leah mentioned describes the details of why the conclusions published in those old research articles are incorrect. Some gastroenterologists are aware of the mistakes, but many others are not. And the problem is that once a medical research article is published, no matter how incorrect the report might be, corrections are very rarely published, and when they are, virtually no one bothers to read them. As a result, those articles remain in the literature to corrupt the training of doctors for decades, unfortunately.
Incidentally, the medical researcher/gastroenterologist who developed the Pepto-Bismol treatment for MC, specified 8 Pepto tablets, or the equivalent, per day, for 8 weeks, in combination with the GF diet. He has the disease himself, so he knows from personal experience what works, and what doesn't work. He also developed the stool tests for determining food sensitivities, and he founded EnteroLab. Most doctors who recommend the treatment to their patients don't realize that the inflammation that causes MC is generated by food sensitivities, so they "forget" to advise their patients to follow the GF diet, and as a result, a few days to a week or so after they end the Pepto treatment, they suffer a relapse of symptoms.
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.
I know this is all so overwhelming at first Susan, but the more you know, the easier it is to accept the fact that you may need change your diet forever. Anything that is made from wheat or barley ( malt) are out and most of us don't do well with oats either. Gluten is a tricky one because some of us ( like me) didn't have immediate reactions to it, so I thought I wasn't intolerant. Gluten antibodies stay in your body for months, so the reaction isn't always noticable. When you read labels ( and you must), it should say what "allergens" are in the product at the end of the ingredient list.
Dairy was also very hard for me. I LOVE cheese and ate a lot of it, but I knew I was reacting to it. Had to go :( Remember, butter is dairy. But ,after a year, I have added back in salads and raw veggies, beans, spices, potato, and a little dark chocolate. I still have issues with some fruits and tomatoes. I will always stay GF, DF, and SF because I feel good and never want to go back to where I was.
We are all individual and have differences in how we get to remission, but most of us who have success stay away from gluten and mostly dairy AT LEAST.
Good luck
Leah
Dairy was also very hard for me. I LOVE cheese and ate a lot of it, but I knew I was reacting to it. Had to go :( Remember, butter is dairy. But ,after a year, I have added back in salads and raw veggies, beans, spices, potato, and a little dark chocolate. I still have issues with some fruits and tomatoes. I will always stay GF, DF, and SF because I feel good and never want to go back to where I was.
We are all individual and have differences in how we get to remission, but most of us who have success stay away from gluten and mostly dairy AT LEAST.
Good luck
Leah
Hi,
Welcome!
I have LC too... I know the feeling. It isn't easy, but with my diet I managed to get it more under control. Here is my diet:
- No gluten!
- No dairy!
- No eggs!
- No soye!
- 2 glasses of soda a day, the rest water.
- my coffee is cafeine free
I started to do this after reading all the advice on this platform. I have to say: it worked for me. I know it seems a difficult diet to follow, but trust me, I was so sick all the time and now I feel so much better. It is worth it!
Good luck!!
Julie
Welcome!
I have LC too... I know the feeling. It isn't easy, but with my diet I managed to get it more under control. Here is my diet:
- No gluten!
- No dairy!
- No eggs!
- No soye!
- 2 glasses of soda a day, the rest water.
- my coffee is cafeine free
I started to do this after reading all the advice on this platform. I have to say: it worked for me. I know it seems a difficult diet to follow, but trust me, I was so sick all the time and now I feel so much better. It is worth it!
Good luck!!
Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
Susan,
Everybody who has spoken has given you good advice. It truly is overwhelming to take in at first because I felt that I had just been told that life as i knew it was over. And...actually it has been, but not in a terrible way. I have found a group of very supportive people and thru a lot of trial and error am working myself into a remission ever so slowly.
I think the worst part about all of this is that one cannot just slowly taper off gluten or dairy. It has to be cold turkey and you have to tough it out by substituting other foods into your diet. I really miss dairy; gluten,not so much. There are some doctors who say no grain at all in the diet until you start to feel better. I seem to be one of those people who does best without the grain, but it is a trade-off because I am allergic to tree nuts and so I have had to eat some rice and corn products. I cannot use any of the g-f flours that are made with nuts or coconut or any of the milks made from those derivatives.
I have been reading so much about the marked difference in chemical make-up of raw milk and milk we buy that is pasteurized in the store that I am still hoping that I may be able to eat raw milk products in time--we'll see, but I know for now that I must stay away from gluten, dairy, and soy at least!
Your doctor and your friend are well meaning and only telling you what they have been told. Neither one has the disease so they cannot tell you anything that is backed by proof of experience.
Everybody who has spoken has given you good advice. It truly is overwhelming to take in at first because I felt that I had just been told that life as i knew it was over. And...actually it has been, but not in a terrible way. I have found a group of very supportive people and thru a lot of trial and error am working myself into a remission ever so slowly.
I think the worst part about all of this is that one cannot just slowly taper off gluten or dairy. It has to be cold turkey and you have to tough it out by substituting other foods into your diet. I really miss dairy; gluten,not so much. There are some doctors who say no grain at all in the diet until you start to feel better. I seem to be one of those people who does best without the grain, but it is a trade-off because I am allergic to tree nuts and so I have had to eat some rice and corn products. I cannot use any of the g-f flours that are made with nuts or coconut or any of the milks made from those derivatives.
I have been reading so much about the marked difference in chemical make-up of raw milk and milk we buy that is pasteurized in the store that I am still hoping that I may be able to eat raw milk products in time--we'll see, but I know for now that I must stay away from gluten, dairy, and soy at least!
Your doctor and your friend are well meaning and only telling you what they have been told. Neither one has the disease so they cannot tell you anything that is backed by proof of experience.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
One more thing...I took 8 Pepto Bismol tabs a day for 15 days and my gastroenterologist was horrified. He doesn't like any of his patients to go over 10 days because "bismuth is so close to arsenic on the periodic table." He worries about toxicity. He told me not to take Pepto again when I saw him in January.
Since I stopped the Pepto and changed my diet while on it, I am now so constipated I can hardly stand it. By constipated I mean hard pieces of stools and I may got 3-4 times a day. Not sure when this will end, but some day I am hoping for something that approaches more normal.
Since I stopped the Pepto and changed my diet while on it, I am now so constipated I can hardly stand it. By constipated I mean hard pieces of stools and I may got 3-4 times a day. Not sure when this will end, but some day I am hoping for something that approaches more normal.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
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- Posts: 101
- Joined: Thu Feb 14, 2013 10:08 am
I'm new here too, but I just wanted to say to read read read as much as you can on this site. It took me a while to really understand what "gluten free" really meant. I had small moments where I tasted my daughter's pizza or other "minor" slips...I didn't really get it's all or nothing initially and even the smallest amount causes issues. I have learned so much on this site, and almost everyday I search something different and get new insight from these people on here.
I still have so many questions. Tex's book just arrived and I can't wait to read it.
I have bad weeks and good days but I'm ready to take charge and change that to fewer bad days and lots of good weeks :)
I still have so many questions. Tex's book just arrived and I can't wait to read it.
I have bad weeks and good days but I'm ready to take charge and change that to fewer bad days and lots of good weeks :)