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When my mother was in her late 80's and having "intestinal" problems, although not as severe as your mother's, I suggested she cut out gluten. She had no interest in trying and was vehemently angry with me for even suggesting it. I never suggested it again. I don't know whether it was just too confusing for her because her mind wasn't what it used to be or if she was just scared of change or some combination of both, but it was clear changing her diet was not something she was going to do. Perhaps if a doctor had suggested it to her it would have been different, but that is always unlikely to happen. I hope your mother can find a way to make the necessary changes. This is a tough thing to go through at any age and especially tough at your mother's age.
Jean
New Collogenous Patient
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Thank you all again.
I think the challenge is this: She will consider a GF diet, but an elimination or BRAT diet at this point just isn't going to happen. It would be one thing to do so if we could find out the trigger within a few days. But to take months to identify each individual trigger one by one? I've come to the conclusion that it's just not gonna happen.
She has never eaten ham or bacon or sausages and I think it will be a leap to get her to eat that stuff for breakfast. I think we are probably going to have to start out leaving eggs in her diet. Also, many of the GF things like GF pancake mix, cake mix, etc ... all require eggs. She had already started on Almond Milk a long time ago, so we can certainly substitute that for milk. But I think eggs are going to have to stay if we are eliminating so many other things (like Yogurt, Oatmeal, e.g.). I bought her Almond Milk sandwiches yesterday (like ice cream sandwiches) but not sure if the chocolate wafer part is really good for her.
GF pasta? Ronzoni has brown rice flour as an ingredient. Brown rice flour for someone with chronic diarrhea?
In other words, Gluten Free is one thing. But there are so many other things in GF foods and mixes that perhaps she shouldn't be ingesting.
I think the challenge is this: She will consider a GF diet, but an elimination or BRAT diet at this point just isn't going to happen. It would be one thing to do so if we could find out the trigger within a few days. But to take months to identify each individual trigger one by one? I've come to the conclusion that it's just not gonna happen.
She has never eaten ham or bacon or sausages and I think it will be a leap to get her to eat that stuff for breakfast. I think we are probably going to have to start out leaving eggs in her diet. Also, many of the GF things like GF pancake mix, cake mix, etc ... all require eggs. She had already started on Almond Milk a long time ago, so we can certainly substitute that for milk. But I think eggs are going to have to stay if we are eliminating so many other things (like Yogurt, Oatmeal, e.g.). I bought her Almond Milk sandwiches yesterday (like ice cream sandwiches) but not sure if the chocolate wafer part is really good for her.
GF pasta? Ronzoni has brown rice flour as an ingredient. Brown rice flour for someone with chronic diarrhea?
In other words, Gluten Free is one thing. But there are so many other things in GF foods and mixes that perhaps she shouldn't be ingesting.
Larry
That's why most of us choose to use the EnteroLab tests rather than to do it the long, tedious way.Larry wrote:But to take months to identify each individual trigger one by one? I've come to the conclusion that it's just not gonna happen.
Don't worry about the eggs at this point. In many cases, if gluten and dairy are eliminated from the diet (without eliminating any other foods), a big improvement can be seen after a few weeks or so. That doesn't happen to everyone, but it happens often enough to be worth a try. And if she can see that the diet changes are working, that should encourage her to stick with it.
But in most cases, the remission only lasts for a week or so, and then the immune system will begin to react to the other problem foods that still remain in the diet (if any still remain in the diet). If you order the EnteroLab tests now though, by then you will know which foods have to be eliminated from the diet, if not, then it will have to be done by trial and error. The most likely problem after gluten and dairy, is soy.
The point is, the odds are decent (better than even) that she is not sensitive to eggs anyway, so why worry about them at this point? If it turns out that she is sensitive to them, you can cross that bridge when you get to it.
One day at a time. You're not going to defeat this disease in one day, no matter what you do, so dedication and steady progress is the name of the game. Start by eliminating the most likely problem foods (gluten and dairy), and go from there.
Corn pasta is usually much better than rice pasta, anyway. Look for Pasta D' Oro, by Sam Mills, for example. It's excellent pasta, IMO. And there there are other brands that others have found to be as good as wheat pasta or better. Hopefully someone will offer other suggestions.GF pasta? Ronzoni has brown rice flour as an ingredient. Brown rice flour for someone with chronic diarrhea?
That's very true. That's why those who cook all their meals from scratch are more likely to recover (and recover faster) than those who eat commercial GF foods and mixes. Not only do most GF processed foods contain too many ingredients, but a lot of them are cross-contaminated with gluten.Larry wrote:In other words, Gluten Free is one thing. But there are so many other things in GF foods and mixes that perhaps she shouldn't be ingesting.
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: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Larry
Some meal options that are low inflammation, gut healing, affordable;
- Stew/slow cooked casseroles ( meat cooked on the bone with vegetables) bland, just salt (minimal spices etc)
- I cook up batches of vegetables on the weekend, then for breakfast reheat some and have them with eggs (called bubble and squeak)
Well cooked meat and veges are easy for the body to digest (less inflammation) and enhance the bodies ability to absorb the nutrients.
Protein shakes - i use a rice based one, bit of coconut sugar and mix with coconut water/rice milk. it seems expensive when you but the protein powder, but the per serve cost is about $3. on a hot day you could put some coconut ice cream with it and make a thick shake.
Each month i make batches of bone broth, freeze it. I cook all my vegetables in it, make stews and soups from it. home made bone broth has good amino acid content, gelatin (healing for leaky gut) Commercial stock/bone broth does not have these good parts
totally get that your head might be spinning. I attained good remission of MC with pretty much diet alone. (and accupuncture/high doses of Vit D3/lifestyle changes)
take it easy for you and your mum, start with changing one meal per day to MC friendly, then a week later, change another meal/snack, gradually transition. If you make gradual changes you will be able to tell if that meal, those ingredients settle ok before you introduce something else and get the meals/preparation into a routine that works.
Hope this helps
Some meal options that are low inflammation, gut healing, affordable;
- Stew/slow cooked casseroles ( meat cooked on the bone with vegetables) bland, just salt (minimal spices etc)
- I cook up batches of vegetables on the weekend, then for breakfast reheat some and have them with eggs (called bubble and squeak)
Well cooked meat and veges are easy for the body to digest (less inflammation) and enhance the bodies ability to absorb the nutrients.
Protein shakes - i use a rice based one, bit of coconut sugar and mix with coconut water/rice milk. it seems expensive when you but the protein powder, but the per serve cost is about $3. on a hot day you could put some coconut ice cream with it and make a thick shake.
Each month i make batches of bone broth, freeze it. I cook all my vegetables in it, make stews and soups from it. home made bone broth has good amino acid content, gelatin (healing for leaky gut) Commercial stock/bone broth does not have these good parts
totally get that your head might be spinning. I attained good remission of MC with pretty much diet alone. (and accupuncture/high doses of Vit D3/lifestyle changes)
take it easy for you and your mum, start with changing one meal per day to MC friendly, then a week later, change another meal/snack, gradually transition. If you make gradual changes you will be able to tell if that meal, those ingredients settle ok before you introduce something else and get the meals/preparation into a routine that works.
Hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Larry,
I'm sorry that your mom is going through such an ordeal at her age, but how lucky she is to have you to research on her behalf. I empathize with your situation; my husband and I are dealing with his 93-year old dad, who has very touchy bowels. We always worry about dehydration, potassium, etc.; at that age, things can snowball fairly quickly.
Anyhow, just wanted to say that I hope things improve to the level that you can take your mom to Mt. Sinai. My GI doc did her training there, and I was SO lucky that she was aware of what MC even was, how to treat it, and immediately suggested that I cut out gluten. I did take Entocort for almost a year, and it really helped me, but the diet change was key for me.
That's so hard to approach with someone your mom's age, though. My FIL voluntarily stopped eating gluten for a while back in his 80s, but would not stick with it (he's old-school Italian--loves his bread and pasta) and has had numerous bowel issues since.
I'm sorry that your mom is going through such an ordeal at her age, but how lucky she is to have you to research on her behalf. I empathize with your situation; my husband and I are dealing with his 93-year old dad, who has very touchy bowels. We always worry about dehydration, potassium, etc.; at that age, things can snowball fairly quickly.
Anyhow, just wanted to say that I hope things improve to the level that you can take your mom to Mt. Sinai. My GI doc did her training there, and I was SO lucky that she was aware of what MC even was, how to treat it, and immediately suggested that I cut out gluten. I did take Entocort for almost a year, and it really helped me, but the diet change was key for me.
That's so hard to approach with someone your mom's age, though. My FIL voluntarily stopped eating gluten for a while back in his 80s, but would not stick with it (he's old-school Italian--loves his bread and pasta) and has had numerous bowel issues since.
Suze
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Larry,
My heart really goes out to you and your mom. I agree that this is a lot and you're probably spinning right now. This is a very tricky disease. But we wouldn't be here online extolling the virtues of looking into food allergies if these things haven't worked for us. *Significant* improvements can be made by a total shift in diet.
A year later and I am med-free and living a very normalish life. A year ago I lived on the toilet and was getting sicker everyday. And my doc told me to eat "whatever I wanted". I would be dead if I didn't change my diet. It took a while for budesonide to impact my condition.
I hope that your mom can keep an open mind and consider the enterolab tests. I recommend at least A&C because that covers a lot of common foods.
There are some excellent turkey sausages on the market these days, perhaps your mother will try one of those if she won't eat pork. Ancient grains corn/quinoa pasta is pretty good.
Best wishes to you both.
Nancy
My heart really goes out to you and your mom. I agree that this is a lot and you're probably spinning right now. This is a very tricky disease. But we wouldn't be here online extolling the virtues of looking into food allergies if these things haven't worked for us. *Significant* improvements can be made by a total shift in diet.
A year later and I am med-free and living a very normalish life. A year ago I lived on the toilet and was getting sicker everyday. And my doc told me to eat "whatever I wanted". I would be dead if I didn't change my diet. It took a while for budesonide to impact my condition.
I hope that your mom can keep an open mind and consider the enterolab tests. I recommend at least A&C because that covers a lot of common foods.
There are some excellent turkey sausages on the market these days, perhaps your mother will try one of those if she won't eat pork. Ancient grains corn/quinoa pasta is pretty good.
Best wishes to you both.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Thank you again, everyone!
Actually, my head isn't spinning as much as hers. I think I kinda get it. But she is not capable of understanding all the complexities and doesn't have the patience to deal with it. The good news is today we started seeing some improvement in frequency and consistency of BMs after 5 days on Uceris. We hope this continues.
Last night, I made her GF pasta (with Olive Oil) and lamb chops. This morning, I made her GF pancakes with bananas and syrup and tonight I made her grilled boneless chicken with a baked potato. She is dying for a salad, a yam, some ice cream. And later in the evening, she ate a few regular pretzels. I cautioned her that she really needs to replace those with GF. She understands but ate them anyway.
My latest plan is:
1. As soon as I can, get her to Dr. Chapman at Mount Sinai in NYC. We were not given a terribly deep explanation of CC when her gastro diagnosed her and he told her there would be no dietary restrictions. I also want to understand whether she needs a course of entocort after the Uceris, given that her CT showed thickening in the Cecum.
2. Get her to a nuitritionist. I'm sure that a nuitritionist isn't going to be terribly familiar with MC, but if I tell him/her what's going on, I'm sure he/she will be able to suggest some meal plans for her and perhaps even some specific products/foods.
3. Get some basic GF food substitutions for what she's eating/drinking now (including snacks). I am not going to concern myself with elimination of eggs or sugar at this point unless it turns out to be necessary down the road. I am going to try to keep her away from milk/dairy products as much as possible because I believe she's already discovered some degree of lactose intolerance in the past. I have gotten the GF stuff in my local supermarket. I need to make a trip to Whole Foods to see what they have.
4. Start working on getting her to consider the EnteroLab tests to try to identify other triggers. I'm still curious if anyone has gotten their insurance co or medicare to cover these. They are quite expensive and it seems rather involved to send fecal material through the mail.
Actually, my head isn't spinning as much as hers. I think I kinda get it. But she is not capable of understanding all the complexities and doesn't have the patience to deal with it. The good news is today we started seeing some improvement in frequency and consistency of BMs after 5 days on Uceris. We hope this continues.
Last night, I made her GF pasta (with Olive Oil) and lamb chops. This morning, I made her GF pancakes with bananas and syrup and tonight I made her grilled boneless chicken with a baked potato. She is dying for a salad, a yam, some ice cream. And later in the evening, she ate a few regular pretzels. I cautioned her that she really needs to replace those with GF. She understands but ate them anyway.
My latest plan is:
1. As soon as I can, get her to Dr. Chapman at Mount Sinai in NYC. We were not given a terribly deep explanation of CC when her gastro diagnosed her and he told her there would be no dietary restrictions. I also want to understand whether she needs a course of entocort after the Uceris, given that her CT showed thickening in the Cecum.
2. Get her to a nuitritionist. I'm sure that a nuitritionist isn't going to be terribly familiar with MC, but if I tell him/her what's going on, I'm sure he/she will be able to suggest some meal plans for her and perhaps even some specific products/foods.
3. Get some basic GF food substitutions for what she's eating/drinking now (including snacks). I am not going to concern myself with elimination of eggs or sugar at this point unless it turns out to be necessary down the road. I am going to try to keep her away from milk/dairy products as much as possible because I believe she's already discovered some degree of lactose intolerance in the past. I have gotten the GF stuff in my local supermarket. I need to make a trip to Whole Foods to see what they have.
4. Start working on getting her to consider the EnteroLab tests to try to identify other triggers. I'm still curious if anyone has gotten their insurance co or medicare to cover these. They are quite expensive and it seems rather involved to send fecal material through the mail.
Larry
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Larry
great news that there is some improvement, and you have been able to transition across to some GF meal/snack options!
Even better that your mind is not overloaded
it is very much gradual progress... (progress not perfection is one of my mottos)
the plan sounds pretty good.
the main aim is to come up with eating plan etc that is sustainable, for both of you, across all the elements physically, mentally, emotionally, financially.
When i was working, if I was struggling to get to outlets with preferred products, I found it easier to order stuff online and get it delivered.
great news that there is some improvement, and you have been able to transition across to some GF meal/snack options!
Even better that your mind is not overloaded
it is very much gradual progress... (progress not perfection is one of my mottos)
the plan sounds pretty good.
the main aim is to come up with eating plan etc that is sustainable, for both of you, across all the elements physically, mentally, emotionally, financially.
When i was working, if I was struggling to get to outlets with preferred products, I found it easier to order stuff online and get it delivered.
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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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
You're doing a wonderful job with your mother. It's very hard to change the eating patterns of a lifetime. If your Mom enjoys snacks, replace them all with GF choices. There are a lot of choices these days especially near a large metropolitan area. Whole Foods has a good selection of GF food and a lot of health food stores do as well. There are some items that I use regularly that I order in bulk on line. Once she starts feeling better and can correlate her better health with the change in diet, she will be more cooperative.
Congratulations for taking the time and making the effort to give your mother a better quality of life. As a precaution, have the genetic test done on yourself. I was shocked when I was diagnosed with CC and celiac disease. I've warned my children and can see signs of celiac issues with one of my sons. It is much better to change your diet before symptoms become overwhelming.
Sheila W
Congratulations for taking the time and making the effort to give your mother a better quality of life. As a precaution, have the genetic test done on yourself. I was shocked when I was diagnosed with CC and celiac disease. I've warned my children and can see signs of celiac issues with one of my sons. It is much better to change your diet before symptoms become overwhelming.
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
Larry!I'm glad Margo sent you here because you have found the best place in the world for information and support. (You probably have figured that out by now.) I hope and pray that things will now get much better for your Mom.
If you look under my screen name, you will see the intolerances that EnteroLab found for me. I even had a repeat test for eggs and yeast. I totally endorse it for genetic and food intolerance testing.
Unfortunately, Entocort never worked for me.
Tex's book would be a fabulous reference for you to have. As you can see in Tex's tag line, diet has everything to do with it. Anyone who says otherwise deserves this
I got my DX on a Friday, found the PP after much searching and by Monday I was GF (gluten free). I had a pretty fast turn around from eliminating it but then soy reared its ugly head and on and on..........DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Larry,
If you can find the So Delicious coconut milk ice cream, and strawberry bars, they are gluten, dairy and soy free. Your mom may like them for a treat. Also, keeping a journal can be helpful. Is your mom taking other medication that may be contributing to MC.
If you can find the So Delicious coconut milk ice cream, and strawberry bars, they are gluten, dairy and soy free. Your mom may like them for a treat. Also, keeping a journal can be helpful. Is your mom taking other medication that may be contributing to MC.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Larry,
Regarding Donna's question:
On the flip side, if she is using a medication that is triggering her MC, and she continues to take it, changing her diet will probably not be sufficient to control her symptoms, because MC is much easier to trigger than it is to control (IOW, any remaining triggers always trump treatments).
Medications that can trigger MC for some patients include (but are not limited to):
NSAIDs, antibiotics, PPIs, SSRIs, SNRIs, statins, beta blockers, bisphosphonates, and others
Tex
Regarding Donna's question:
Many medications can trigger MC, and if you mom is taking one that is causing her to react, it's possible that discontinuing the use of that medication (or those medications) may bring permanent remission (as long as she avoids that class of drugs).Is your mom taking other medication that may be contributing to MC.
On the flip side, if she is using a medication that is triggering her MC, and she continues to take it, changing her diet will probably not be sufficient to control her symptoms, because MC is much easier to trigger than it is to control (IOW, any remaining triggers always trump treatments).
Medications that can trigger MC for some patients include (but are not limited to):
NSAIDs, antibiotics, PPIs, SSRIs, SNRIs, statins, beta blockers, bisphosphonates, and others
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 Tex and all. She has been taken off her PPI just last week. She is on Cymbalta, but this is another "untouchable". She simply is convinced that she cannot survive without it. And she has been on it for many many years, so I'm not sure that it's a likely trigger for something that just happened in the past 2 months. This is just something that will have to go to the bottom of the list, if all else fails. She is still taking Zantac, and still taking a baby aspirin and a statin.tex wrote:Larry,
Regarding Donna's question:
Many medications can trigger MC, and if you mom is taking one that is causing her to react, it's possible that discontinuing the use of that medication (or those medications) may bring permanent remission (as long as she avoids that class of drugs).Is your mom taking other medication that may be contributing to MC.
On the flip side, if she is using a medication that is triggering her MC, and she continues to take it, changing her diet will probably not be sufficient to control her symptoms, because MC is much easier to trigger than it is to control (IOW, any remaining triggers always trump treatments).
Medications that can trigger MC for some patients include (but are not limited to):
NSAIDs, antibiotics, PPIs, SSRIs, SNRIs, statins, beta blockers, bisphosphonates, and others
Tex
Larry
Hi and thanks!JLH wrote:
I'm glad Margo sent you here because you have found the best place in the world for information and support. (You probably have figured that out by now.) I hope and pray that things will now get much better for your Mom.
If you look under my screen name, you will see the intolerances that EnteroLab found for me. I even had a repeat test for eggs and yeast. I totally endorse it for genetic and food intolerance testing.
Unfortunately, Entocort never worked for me.
Tex's book would be a fabulous reference for you to have. As you can see in Tex's tag line, diet has everything to do with it. Anyone who says otherwise deserves this
In fact, we just discussed the Enterolab tests. She keeps asking if Medicare will cover it. I think she will consider it, but I also think she wants to talk to another gastro about the whole thing. Like I said, we are also looking into a nuitritionist or dietician.
Larry
So I took my Mom to her PCP today to get her Potassium tested. She asked him what he thought about a GF diet. His response was that she didn't need to be on one because she tested negative for Celiac. To which she turned to me and said "See!". I suspect that she may very well get the same response from her gastroenterologist. I also made an appt with Dr. Mark Chapman at Mt. Sinai, but who knows what his response will be.
Afterwards, I took her for over an hour looking for GF foods and snacks at Whole Foods. We then went to dinner (for the first time in weeks so it appears that the Uceris is definitely helping). At dinner, I purposely took her to a place that had a GF menu. After all this ... in spite of my warnings ... she insisted on having on having some salad, some cooked vegetables, and a couple of large pieces of bread that was brought to the table. Sure enough, on the way home, she had the urge to go (although thankfully, it wasn't D). I tried to explain to her that this was an indication that something she ate at dinner was a trigger, but she shrugged it off and said "you can't go crazy with this".
The problem I have is I can't risk her getting a relapse of any significant length. I cannot continue to devote the time to care for her and clean up after her ... both out of my job and my personal life. While initial results from the Uceris are good (at least for the past 3-4 days), I worry that they are not going to allow her to stay on it indefinitely. She is already complaining of side effects (like "just not feeling herself", itching, and swelling in the ankles). And eventually, she needs to return to live by herself in Florida. You can certainly see that going beyond GF ... to completely eliminate eggs, soy, dairy, etc ... is just not going to happen.
I don't know if any of you have any words of wisdom on what I can do. I wonder if any of you would care to write a response to this post here (to her ... her name is Regina) and explain why she needs to be (at a minimum) GF in spite of what the Drs say, what it means to be GF (i.e. what the ramifications of small amts of gluten can be) and your thoughts on the probability that she can stay in remission after coming off the Uceris without going GF?
Afterwards, I took her for over an hour looking for GF foods and snacks at Whole Foods. We then went to dinner (for the first time in weeks so it appears that the Uceris is definitely helping). At dinner, I purposely took her to a place that had a GF menu. After all this ... in spite of my warnings ... she insisted on having on having some salad, some cooked vegetables, and a couple of large pieces of bread that was brought to the table. Sure enough, on the way home, she had the urge to go (although thankfully, it wasn't D). I tried to explain to her that this was an indication that something she ate at dinner was a trigger, but she shrugged it off and said "you can't go crazy with this".
The problem I have is I can't risk her getting a relapse of any significant length. I cannot continue to devote the time to care for her and clean up after her ... both out of my job and my personal life. While initial results from the Uceris are good (at least for the past 3-4 days), I worry that they are not going to allow her to stay on it indefinitely. She is already complaining of side effects (like "just not feeling herself", itching, and swelling in the ankles). And eventually, she needs to return to live by herself in Florida. You can certainly see that going beyond GF ... to completely eliminate eggs, soy, dairy, etc ... is just not going to happen.
I don't know if any of you have any words of wisdom on what I can do. I wonder if any of you would care to write a response to this post here (to her ... her name is Regina) and explain why she needs to be (at a minimum) GF in spite of what the Drs say, what it means to be GF (i.e. what the ramifications of small amts of gluten can be) and your thoughts on the probability that she can stay in remission after coming off the Uceris without going GF?
Larry