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I have an appointment with my GI tomorrow as a follow-up to my recent diverticulitis attack.
We'll probably also discuss my MC and I'm not sure what I will say. At my last appointment, I thought I was in remission due to the changes I made in my diet. I was wrong, of course, and continue to struggle after two years of constant vigilance.
Norman hasn't visited me for 11 days and I have had explosive D three of those 11 days. The rest of the time I don't have D, but I don't see Norman. I haven't introduced any new foods, but have eliminated a few more. The one good piece of news is that I'm down to just one BM per day most days. I'm still taking 3 mg. of Entocort every day.
I'm considering asking my GI to recommend allergy testing, fructose intolerance testing, etc. I don't know what types of testing are effective. Mary Beth felt that the MRT test was accurate and helpful. Hopefully my GI will endorse the test and I can get insurance to pay for it. Maybe if I remind him that I had a strong reaction to Pepto Bismol, he'll agree that I need further testing.
Gloria
Going to GI Tomorrow
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Going to GI Tomorrow
You never know what you can do until you have to do it.
I wonder if you could be having D from on-going diverticulitis. Entocort probably wouldn't be able to handle that.
Tex
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.
Interesting thought, Tex. I don't seem to have any other residual problems, but it's worth considering.
My GI's solution would probably be to take that double dose of antibiotics that I declined. I'm not sure that I even want to take Cipro for a couple of weeks.
There are a couple of foods that I can try to completely eliminate. One is tapioca flour. I've been wanting to test it by making vanilla pudding with it, but I haven't stabilized enough to do testing. Tapioca flour is an ingredient in every baking product/recipe I've seen. The other is all traces of onion. I've eliminated fresh and cooked onions, but onion flavoring is in many products including all soup broths and catsup. Onion flavoring is almost as pervasive as corn and soy, but it's not as widely recognized as an intolerance, so alternative products are difficult to find.
Gloria
My GI's solution would probably be to take that double dose of antibiotics that I declined. I'm not sure that I even want to take Cipro for a couple of weeks.
There are a couple of foods that I can try to completely eliminate. One is tapioca flour. I've been wanting to test it by making vanilla pudding with it, but I haven't stabilized enough to do testing. Tapioca flour is an ingredient in every baking product/recipe I've seen. The other is all traces of onion. I've eliminated fresh and cooked onions, but onion flavoring is in many products including all soup broths and catsup. Onion flavoring is almost as pervasive as corn and soy, but it's not as widely recognized as an intolerance, so alternative products are difficult to find.
Gloria
You never know what you can do until you have to do it.
Eliminating the tapioca flour might be worth a try. It just dawned on me that I tried tapioca a few times about a year or so ago, and got D, (not violent, but still D), each time. I need to check that out again, and add it to my list, I suppose, if I still react to it. I had forgotten about that. I blamed it on the milk, at the time, but I discovered later, that I don't react to milk, (at least not any more). Matthew regularly campaigns against the evils of tapioca, too, as I recall.
Whatever is causing your problem, is probably something that you're eating virtually every day, as is so often the case, when we discover the final piece of the puzzle.
Tex
Whatever is causing your problem, is probably something that you're eating virtually every day, as is so often the case, when we discover the final piece of the puzzle.
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.
I've thought about substituting the tapioca flour with cornstarch in my flour mixes. Apparently the main benefit of tapioca flour is that it gives breads a "chewy" texture. I can live without that.
My main concern is adding cornstarch to my diet on a regular basis. I haven't detected any intolerance to corn, but I only eat it in tacos and when it's an ingredient in catsup, etc. I avoid it whenever possible as corn syrup and as a sweetener. Would I be increasing my chances of developing an intolerance to it if I began to eat it regularly in my baked products? Or would it have manifested itself as an intolerance by now?
Gloria
My main concern is adding cornstarch to my diet on a regular basis. I haven't detected any intolerance to corn, but I only eat it in tacos and when it's an ingredient in catsup, etc. I avoid it whenever possible as corn syrup and as a sweetener. Would I be increasing my chances of developing an intolerance to it if I began to eat it regularly in my baked products? Or would it have manifested itself as an intolerance by now?
Gloria
You never know what you can do until you have to do it.
Gloria,
Have you thought about going paleo for a while and then adding things back gradually? I suggest this, since you and I have the same genes, and I don't do well with any grains really. Cornstarch and tapioca flour are both no-nos for me. I feel best if I eat no grains, even rice. The main reason I had to go paleo was because I couldn't get rid of all D until I did. Just a thought.
Good luck today. Glad your heart is OK. Since you woke up with the pain, maybe you "slept on it wrong". Or maybe you overdid exercise the day before. IOW, it may have been muscle pain, like a muscle between the ribs. Usually, if there is a spot that you can poke and it hurts, it is not heart-related.
Love,
Polly
Have you thought about going paleo for a while and then adding things back gradually? I suggest this, since you and I have the same genes, and I don't do well with any grains really. Cornstarch and tapioca flour are both no-nos for me. I feel best if I eat no grains, even rice. The main reason I had to go paleo was because I couldn't get rid of all D until I did. Just a thought.
Good luck today. Glad your heart is OK. Since you woke up with the pain, maybe you "slept on it wrong". Or maybe you overdid exercise the day before. IOW, it may have been muscle pain, like a muscle between the ribs. Usually, if there is a spot that you can poke and it hurts, it is not heart-related.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Gloria,
Personally, I don't believe that eating corn will make you more likely to become intolerant of it, but if you are already intolerant of it, then there may be a threshold above which you will experience symptoms, and below which, you may not notice any symptoms. If that's the case, then continuing to eat it may indeed make you more sensitive to it.
I agree with polly, though. Considering your genetic match with Polly, the last links to the puzzle, may be the foods that you are still eating, that she avoids in her diet.
Good luck at the appointment.
Tex
Personally, I don't believe that eating corn will make you more likely to become intolerant of it, but if you are already intolerant of it, then there may be a threshold above which you will experience symptoms, and below which, you may not notice any symptoms. If that's the case, then continuing to eat it may indeed make you more sensitive to it.
I agree with polly, though. Considering your genetic match with Polly, the last links to the puzzle, may be the foods that you are still eating, that she avoids in her diet.
Good luck at the appointment.
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.
I'm going to chime in about tapioca. I'm certain that I'm intolerant of it. Confession time: I had been eating Nana's cookies, because they don't have any gluten, casein, eggs, soy, corn, etc...as just about my only portable snack. I decided to bite the bullet and give them up, because I noticed so many here have problems with it. That was a few weeks ago, and while I have not seen Norman, I have noticed a clear improvement in frequency, urgency, and volume. (By clear, I mean a little more of the toilet bowl remains clear. 
) I also have not eaten any mixes that contain tapioca and have not experienced the explosive D I would get after yummy pancakes. I've decided to just make all my own food using as few ingredients as possible for awhile, so that I can better pinpoint problems.
Hope your appointment goes well, Gloria.
Courtney
) I also have not eaten any mixes that contain tapioca and have not experienced the explosive D I would get after yummy pancakes. I've decided to just make all my own food using as few ingredients as possible for awhile, so that I can better pinpoint problems.Hope your appointment goes well, Gloria.
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
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RUBYREDDOG
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Gloria,
Good luck with the G.I. doc. today. Hopefully he will have some answers for you. You have come such a long way so far. The last pieces of the puzzle seem to be very problematic for you. I'm also having trouble maintaining norman while reducing my Entocort dosage. Lately I have eliminated sun flower seed butter (which I love). I noticed that you list it as being a part of your diet as well. I can't tell if it is helping yet, for sure, but there seem to be some benefits showing up. Just a thought . I'm sure that you are investigating all possibilities.
Hotrod
Good luck with the G.I. doc. today. Hopefully he will have some answers for you. You have come such a long way so far. The last pieces of the puzzle seem to be very problematic for you. I'm also having trouble maintaining norman while reducing my Entocort dosage. Lately I have eliminated sun flower seed butter (which I love). I noticed that you list it as being a part of your diet as well. I can't tell if it is helping yet, for sure, but there seem to be some benefits showing up. Just a thought . I'm sure that you are investigating all possibilities.
Hotrod
Well, my visit was pretty predictable - A WASTE OF TIME.
The nurse was surprised that I didn't take the double antibiotics for my diverticulitis attack. I told her that I'll always wonder if it caused my MC the last time I took them. She said no more. Neither did the GI when I told him.
I told my GI that I've been unable to get completely off Entocort and have tried two times. He shrugged his shoulders and said some can; some can't and you're one who can't. He couldn't understand why I want to get off of it when it's working for me and I'm having no side effects. Sometimes I wonder that myself. I told him that I'll be going on Medicare in a year and I am concerned that I'll have to pay considerably more than the $40 for 180 pills that I'm paying under DH's insurance plan. He really didn't have any response to that. I said that I'm hoping there will be a generic version by then, and he told me that there already was a generic version. This is when I lost my confidence in him. He said there were two types: one is called Entocort and the other is called Budesonide. I told him that I was pretty sure that my insurance would recommend the generic version if it existed.
He brushed off my inquiries about allergy testing. I showed him the home page of the LEAP testing group that Mary Beth used recently. He wasn't familiar with them and said that if something was wildly successful, everyone would be using it. But then he qualified his statement by saying it needed to meet standards, too. He agreed that this is an autoimmune disease, but didn't seem to think it was important to determine what our bodies are reacting to. It seems pretty logical to me that if the body has an autoimmune reaction, the first thing you'd do is look for the cause of the reaction.
He's still quite pleased that his office diagnoses MC. He thinks they're way ahead of the curve.
He said that he never gives a diagnosis of IBS to women over 50 with constant diarrhea until he's done a biopsy to rule out MC. I told him that there would be a fewer cases of IBS and more cases of MC if physicians would look for it. I asked him if he's finding more cases of MC as a result and he said "Oh, yes!" I didn't tell him that he should include women under 50 in his biopsy tests.
I left wondering why I went, but he did say that he'll give me an Entocort prescription renewal any time I need it.
Gloria
The nurse was surprised that I didn't take the double antibiotics for my diverticulitis attack. I told her that I'll always wonder if it caused my MC the last time I took them. She said no more. Neither did the GI when I told him.
I told my GI that I've been unable to get completely off Entocort and have tried two times. He shrugged his shoulders and said some can; some can't and you're one who can't. He couldn't understand why I want to get off of it when it's working for me and I'm having no side effects. Sometimes I wonder that myself. I told him that I'll be going on Medicare in a year and I am concerned that I'll have to pay considerably more than the $40 for 180 pills that I'm paying under DH's insurance plan. He really didn't have any response to that. I said that I'm hoping there will be a generic version by then, and he told me that there already was a generic version. This is when I lost my confidence in him. He said there were two types: one is called Entocort and the other is called Budesonide. I told him that I was pretty sure that my insurance would recommend the generic version if it existed.
He brushed off my inquiries about allergy testing. I showed him the home page of the LEAP testing group that Mary Beth used recently. He wasn't familiar with them and said that if something was wildly successful, everyone would be using it. But then he qualified his statement by saying it needed to meet standards, too. He agreed that this is an autoimmune disease, but didn't seem to think it was important to determine what our bodies are reacting to. It seems pretty logical to me that if the body has an autoimmune reaction, the first thing you'd do is look for the cause of the reaction.
He's still quite pleased that his office diagnoses MC. He thinks they're way ahead of the curve.
He said that he never gives a diagnosis of IBS to women over 50 with constant diarrhea until he's done a biopsy to rule out MC. I told him that there would be a fewer cases of IBS and more cases of MC if physicians would look for it. I asked him if he's finding more cases of MC as a result and he said "Oh, yes!" I didn't tell him that he should include women under 50 in his biopsy tests.I left wondering why I went, but he did say that he'll give me an Entocort prescription renewal any time I need it.
Gloria
You never know what you can do until you have to do it.
BTW - Thank you for all your responses and suggestions. I always know when I post that I'm struggling that I'll get a smorgasbord of suggestions. 
I know it's because you feel my pain and are trying to help me.
Norman did visit me this morning!!, so I must have done something right yesterday. I didn't eat any pineapples yesterday or today. That's the only canned fruit I've been eating. Sigh. Pineapples are listed as kind to the intestines in one place and having too high of a fructose content in another.
I did make some waffles this morning substituting the 1/4 c. tapioca flour with 1/4 c. sweet rice flour. What a difference 1/4 c. makes. They were gummier because sweet rice is sticky rice. I'll need to find a different substitution, I guess. I'm not sure I'll find an adequate one. Any ideas, Dee? Quinoa? Maybe that's why Matthew finally gave up baking altogether. I don't want to do that. That's one of the reasons I haven't gone Paleo, Polly. Plus, I don't want to give up rice and pasta. I don't think DH would be happy about that.
Hotrod and Tex,
I've thought about the sunflower butter. Unfortunately, I have three lunch options: soup, rice cakes with sunflower butter, and a turkey sandwich. I could try almond butter and see if it makes a difference.
Gloria
I know it's because you feel my pain and are trying to help me. Norman did visit me this morning!!, so I must have done something right yesterday. I didn't eat any pineapples yesterday or today. That's the only canned fruit I've been eating. Sigh. Pineapples are listed as kind to the intestines in one place and having too high of a fructose content in another.
I did make some waffles this morning substituting the 1/4 c. tapioca flour with 1/4 c. sweet rice flour. What a difference 1/4 c. makes. They were gummier because sweet rice is sticky rice. I'll need to find a different substitution, I guess. I'm not sure I'll find an adequate one. Any ideas, Dee? Quinoa? Maybe that's why Matthew finally gave up baking altogether. I don't want to do that. That's one of the reasons I haven't gone Paleo, Polly. Plus, I don't want to give up rice and pasta. I don't think DH would be happy about that.
Hotrod and Tex,
I've thought about the sunflower butter. Unfortunately, I have three lunch options: soup, rice cakes with sunflower butter, and a turkey sandwich. I could try almond butter and see if it makes a difference.
Gloria
You never know what you can do until you have to do it.
Ah jeez Gloria, that was a waste of time, your trip to the Doc. They just seem to think if they tell us what is wrong then their job is done.. 
"Ok bye bye now. Let me know if there is anything else I can't do to help you."
Luckily we can come together in cyberspace and help each other along, we are better off, atleast we can get some answers and some moral support.
Deb
"Ok bye bye now. Let me know if there is anything else I can't do to help you."
Luckily we can come together in cyberspace and help each other along, we are better off, atleast we can get some answers and some moral support.
Deb
Hypothyroid 06/01
LC 12/06
Dwell on the positive.
Happiness is a result of a decision to be happy.
LC 12/06
Dwell on the positive.
Happiness is a result of a decision to be happy.