Hi All,
I am new to this web community but am not newly diagnosed. I was dx 3 years ago but soon after the dx went into remission. In fact, I didn't think my CC diagnosis was correct. However, my G E assured me that I do have collagenous colitis and that my symptoms would return. And, she was right! A full spectrum of CC symptoms returned and have been unrelenting for nearly 6 months. My G E recommended Lomotil and Imodium and suggested trying dietary changes, though she said that diet hadn't proven to be the cause or cure of CC. Last week I had another stool study to rule out infection and I had decided at the G E 's suggestion to try budenoside.(sp.?).
Fortunately I googled diet and microscopic colitis and this website came up. So far, I bought and have read Wayne Persky's book and have gone two days on an elimination diet (rice, chicken and banana). I have had no D and am hoping that this is a sign of healing taking place.
A small problem is that I have developed a very scratchy throat. Do you think it would hurt the progress of my elimination diet to take Cold-Eze (zinc lozenge)?
I am so hopeful that dietary changes will help me. Ptior to this current flare I had become almost entirely vegan. I had green smoothies daily. Veggies and grains and legumes and soy products had become my staples. Healthy for some folks but maybe not for me.
Thank you! It is wonderful to.have a place to share the misery of CC and learn what has helped and given hope to others.
Thank you,
Kay
Glad I found this website
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Kay,
Welcome to our internet family. We consider ourselves a family because we have a common bond of understanding. No one seems to understand this disease unless they actually have it, but on this site, we are all fortunate enough to understand it extremely well — too well, in fact.
With this disease, there is no one-size-fits-all solution, and most doctors have limited success in treating it, so we have to learn enough about it to fine-tune our own treatment program. By sharing experiences, and comparing notes, we learn from each other, so that we're able to work out an individual treatment program that closely fits our personal needs, and you seem to be well on your way toward recovery.
Unless you are taking an antibiotic, you should have no problem with the Cold-Eze. It shouldn't affect your recovery from MC. Just be careful not to use any of the zinc gluconate in your nose, (I don't know if any of the zinc gluconate gel marketed for nasal use is still available, but it can cause a permanent loss of smell for some people, when used in the nasal passages). The lozenges are fine (and effective against rinoviruses) when properly used.
It sounds as though your treatment program is off to a great start. It's obvious that you are motivated, and motivated people get results. Again, welcome aboard, and please feel free to ask any questions that might come to mind.
Tex (Wayne)
Welcome to our internet family. We consider ourselves a family because we have a common bond of understanding. No one seems to understand this disease unless they actually have it, but on this site, we are all fortunate enough to understand it extremely well — too well, in fact.
With this disease, there is no one-size-fits-all solution, and most doctors have limited success in treating it, so we have to learn enough about it to fine-tune our own treatment program. By sharing experiences, and comparing notes, we learn from each other, so that we're able to work out an individual treatment program that closely fits our personal needs, and you seem to be well on your way toward recovery.
Unless you are taking an antibiotic, you should have no problem with the Cold-Eze. It shouldn't affect your recovery from MC. Just be careful not to use any of the zinc gluconate in your nose, (I don't know if any of the zinc gluconate gel marketed for nasal use is still available, but it can cause a permanent loss of smell for some people, when used in the nasal passages). The lozenges are fine (and effective against rinoviruses) when properly used.
It sounds as though your treatment program is off to a great start. It's obvious that you are motivated, and motivated people get results. Again, welcome aboard, and please feel free to ask any questions that might come to mind.
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 Kay,
I thought I'd add that you want to be aware that while taking budesonide, some symptoms can be masked. I took budesonide for a little more than 4 months and it did get me back on my feet. In fact it 'bought me time' to get myself educated on diet although I went gluten free and dairy free even before my diagnosis was confirmed. When I eliminated soy I saw a big improvement. It was when I was off of budesonide that I found I was sensitive to eggs
. When on budesonide I did not see a reaction to eggs.
I probably stayed on the budesonide too long. I was so afraid of having another big flare that I was reluctant to titrate too rapidly and as a result I had cramping and constipation. The cramping disappeared every time I decreased the dose. Looking back I can see that should have been the sign that I needed to drop it down. I think there are others here that had similar side effects and used that as a sign to decrease their dosage too.
I'm sorry you have this condition but glad you found us.
Carol
I thought I'd add that you want to be aware that while taking budesonide, some symptoms can be masked. I took budesonide for a little more than 4 months and it did get me back on my feet. In fact it 'bought me time' to get myself educated on diet although I went gluten free and dairy free even before my diagnosis was confirmed. When I eliminated soy I saw a big improvement. It was when I was off of budesonide that I found I was sensitive to eggs
. When on budesonide I did not see a reaction to eggs. I probably stayed on the budesonide too long. I was so afraid of having another big flare that I was reluctant to titrate too rapidly and as a result I had cramping and constipation. The cramping disappeared every time I decreased the dose. Looking back I can see that should have been the sign that I needed to drop it down. I think there are others here that had similar side effects and used that as a sign to decrease their dosage too.
I'm sorry you have this condition but glad you found us.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Welcome Kay! I was going to ask if you ever even took your doctor's suggestion about Budesonide. If not, you are doing great with diet alone. If you have, them Carol makes a great point. I took it for 6 months, but didn't notice the soy reaction until I was down to a very low dose.
WHen I start feeling like I might be getting sick, I take larger doses of Vitamin D. Seems to work for me :)
You are right to question your grain and soy diet. It may have been what put you back into this flare.
Good luck and keep us posted on your progress
Leah
WHen I start feeling like I might be getting sick, I take larger doses of Vitamin D. Seems to work for me :)
You are right to question your grain and soy diet. It may have been what put you back into this flare.
Good luck and keep us posted on your progress
Leah
Thank you Carol and Leah,
I haven't started taking Budesonide as yet. The elimination diet seems to be working well so far. I really would prefer to see whether diet changes will give me relief from the D and other nasty symptoms. Did either of you consult a dietician? I imagine that it can be complicated when starting to add foods back to the diet. I'm thinking I'll start with wheat, then dairy, then soy and egg. One at a time and then see whether I can tolerate cooked vegetables.
Thanks for your encouraging responses and for sharing your experiences with Budesonide. When adding foods, is it okay to begin to eat those that don' t cause reactions while testing new foods.?
Thanks again for your help!
Kay
I haven't started taking Budesonide as yet. The elimination diet seems to be working well so far. I really would prefer to see whether diet changes will give me relief from the D and other nasty symptoms. Did either of you consult a dietician? I imagine that it can be complicated when starting to add foods back to the diet. I'm thinking I'll start with wheat, then dairy, then soy and egg. One at a time and then see whether I can tolerate cooked vegetables.
Thanks for your encouraging responses and for sharing your experiences with Budesonide. When adding foods, is it okay to begin to eat those that don' t cause reactions while testing new foods.?
Thanks again for your help!
Kay
Kay
Hi Kay.
Sure you can always eat foods that seem safe for you.
I would wait a while before trying to introduce things back in though. Healing takes time. When you do , however, I WOULD NOT test wheat first..... or EVER! Almost all of us can never eat Gluten again... and if we do, a relapse is bound to happen down the road.I would start with the "irritant" foods like vegetables and fruit. Then move to beans and such. Remember to only do one food at a time with about three days between. The reaction to dairy and soy is usually pretty fast ( within a day), but sometimes it takes eating something for a while to build up enough antibodies to get a reaction. I believe that happened to Tex with Oats.
I have not used a dietician for two reasons : I an a certified nutritionist and because most of them are still going by the government guidelines of whole grains being a mainstay in the diet. They also don't know much about this disease.
Take Care
Leah
Sure you can always eat foods that seem safe for you.
I would wait a while before trying to introduce things back in though. Healing takes time. When you do , however, I WOULD NOT test wheat first..... or EVER! Almost all of us can never eat Gluten again... and if we do, a relapse is bound to happen down the road.I would start with the "irritant" foods like vegetables and fruit. Then move to beans and such. Remember to only do one food at a time with about three days between. The reaction to dairy and soy is usually pretty fast ( within a day), but sometimes it takes eating something for a while to build up enough antibodies to get a reaction. I believe that happened to Tex with Oats.
I have not used a dietician for two reasons : I an a certified nutritionist and because most of them are still going by the government guidelines of whole grains being a mainstay in the diet. They also don't know much about this disease.
Take Care
Leah
yes, like Leah said I didn't use a dietician either. I asked my GI doc if they had one on staff and they didn't so I did it myself. No one seems to understand this disease like the people here and frankly this is where I was getting the best advice.
I would eat my 'baseline diet' -- which for me was chicken, rice, carrots, Rice Chex, then try a new food for 3 consecutive days, then I'd drop back to one day of baseline. if I had no reactions, it would be part of my diet (probably not daily like chicken was but maybe twice a week), then I would try another food for 3 consecutive days, always dropping back to one day of baseline diet before moving on. if I reacted it was usually the next day and there was no mystery. For example, I tried spinach one evening and the next morning had about 4 rounds of watery D-- which is really something because I am C prominent.
Anyway with this system I've added many foods mainly fruits, vegetables, almonds and cashews, and I have plenty to rotate around. It just takes time. But I should add that I didn't test like this for a full year. For the 1st year after my diagnosis, I pretty much ate my baseline diet, plus turkey, ground beef, rice, and potatoes, rotating those around. Now I've substituted other vegetables for rice and potatoes.
Good luck on your food challenges.
Carol
I would eat my 'baseline diet' -- which for me was chicken, rice, carrots, Rice Chex, then try a new food for 3 consecutive days, then I'd drop back to one day of baseline. if I had no reactions, it would be part of my diet (probably not daily like chicken was but maybe twice a week), then I would try another food for 3 consecutive days, always dropping back to one day of baseline diet before moving on. if I reacted it was usually the next day and there was no mystery. For example, I tried spinach one evening and the next morning had about 4 rounds of watery D-- which is really something because I am C prominent.
Anyway with this system I've added many foods mainly fruits, vegetables, almonds and cashews, and I have plenty to rotate around. It just takes time. But I should add that I didn't test like this for a full year. For the 1st year after my diagnosis, I pretty much ate my baseline diet, plus turkey, ground beef, rice, and potatoes, rotating those around. Now I've substituted other vegetables for rice and potatoes.
Good luck on your food challenges.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Thanks, Leah! I so appreciate the suggestions!
Thanks for your suggestions and encouragement. Think I'll stick with chicken, rice, bananas for right now and drink plenty of water.
Kay
Kay
Kay
Thanks Carol
Thanks for your encouragement and sharing your diet experience. I think I'll I need to stick with this elimination diet longer and give myself time to heal. I'm hoping to find which foods (and meds. if needed), that will help my colon do it's job. Though, when I think about it, I'm not sure it ever has worked smoothly. At least not since I've reached adulthood. I do have a history of skin reactions to eggs, perhaps my digestive tract reacts to allergens as well. And, maybe the rashes were not entirely caused by egg alone.
Be well,
Kay
Be well,
Kay
Kay
Hi Kay,
It sounds as though you may have mast cell issues. Many of us do, associated with our MC. If you are interested in learning more about this, and how to treat it, please read the information articles at the links under the "Mast Cells" section on the right side of the page at the following link:
http://microscopiccolitis.org/
Tex
It sounds as though you may have mast cell issues. Many of us do, associated with our MC. If you are interested in learning more about this, and how to treat it, please read the information articles at the links under the "Mast Cells" section on the right side of the page at the following link:
http://microscopiccolitis.org/
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.