Hi Everyone,
I've been away for a while because I've been taking care of my father who had his knee replaced, plus work has been quite busy. I've been in Minnesota for 2 weeks now, but get to go home to Denver on Sunday. I am so glad I was able to be here for Daddy through all of this. Now it's time to go home and take care of myself and my husband.
I have had watery D for 3 weeks now, and it's become XD over the last week. I've been very careful about gluten, oats, dairy for months now. I did have 1 teaspoon of flourless-cake the other night which did cause an immediate vibration feeling all through my body which I attribute to the dairy. I felt as though I had taken a strong medication that sent a reaction through me quickly, very quickly. Today I ate a raw apple. This afternoon I had my first-ever episode of not making it to the bathroom in time. In fact, I didn't even know I needed to go. It was so disgusting. I'm glad I was home!!
Ever since this flare started, my pains have returned in my knees, my hands, wrists, elbows, even my feet. I get cramps in my feet at night. This can't continue.
I need advice. Should I get EnteroLab tests or MRT tests first? I feel like I don't know what my triggers are other than gluten, oats, and dairy. Any advice you can offer is much appreciated!
Sharaine
So sick again ... Enterolab or MRT?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Sharaine,
Sorry to hear that you're having such a bad flare. It's usually most practical to do the EnteroLab testing first. Except for the "11 other antigens" test at EnteroLab, though, the only tests for primary food-sensitivities that you could use are the ones for eggs, soy, and yeast, (since you already know that you're sensitive to gluten and dairy). Soy is the main suspect, since about half of us are sensitive to soy, so while you're waiting the 3 weeks to get results, you might be ahead eliminating soy, while you're waiting for the test results.
Since your flare is so severe, you might want to do both tests.
Tex
Sorry to hear that you're having such a bad flare. It's usually most practical to do the EnteroLab testing first. Except for the "11 other antigens" test at EnteroLab, though, the only tests for primary food-sensitivities that you could use are the ones for eggs, soy, and yeast, (since you already know that you're sensitive to gluten and dairy). Soy is the main suspect, since about half of us are sensitive to soy, so while you're waiting the 3 weeks to get results, you might be ahead eliminating soy, while you're waiting for the test results.
Since your flare is so severe, you might want to do both tests.
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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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Sharlaine, I too am sorry to hear you are having a bad flare. I don't have any advice as I am still new at this myself and trying to put a stop to the D I continue to have. Since you are asking about Enterolab or MRT testings, how did you find out about gluten and dairy as being sensitivities for you?
Hope you find comfort soon.
Paula
Hope you find comfort soon.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I couldnt afford the Enterolab testing when first Dx and figured out my main triggers via elimination, most of that was not having the ingredients that majority of people reacted to, (salad, greens, tomato's) and then when i did have issues eliminate the next most popular trigger (ie soy or yeast)
There are stil quite a few food items i havent not had since joining this board, i will test them one day...
regardless i think it is important to remove the main triggers first, and once have things mostly under control then focus on the histamine/medium sensitivity type reactions.
depending on what you can afford, go with the one that will give you the optimal results of determining the main triggers.
hope things settle down soon and you get the answers you need to tame the cheeky MC monkey......
take care
There are stil quite a few food items i havent not had since joining this board, i will test them one day...
regardless i think it is important to remove the main triggers first, and once have things mostly under control then focus on the histamine/medium sensitivity type reactions.
depending on what you can afford, go with the one that will give you the optimal results of determining the main triggers.
hope things settle down soon and you get the answers you need to tame the cheeky MC monkey......
take care
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 Sharaine,
I think the other thing you have to take into consideration is how much stress you've been under.
I stayed with my dad while he had 3 hospitalizations within a 2 week period last November. Prior to that I had been able to get off of the PPI I had been taking (Dexilant). I took my food to the hospital (4 hours away) and ate the same foods that I was eating at home. Yet the second day of 'hospital duty' it was clear I needed to get back on the Dexilant. I'm sure it was just stress-- the worry, the hospital setting, the odors, no place to unwind, talking to doctors, having to be the one to report back to other relatives on Dad's progress, and sleeping in hotels or at a friends and the lack of sleep. Even when at his home I was constantly "on". So, although you may be flaring from some cross contamination, stress is a definite trigger too that I think cannot be ignored. Once I was back home for a couple of days I no longer needed the Dexilant.
Like you, I was happy to do that for my dad, but there's no denying it's draining, mentally and physically. For your sake I'm glad you are going home.
I am just now doing the Enterolab tests and hope to get them mailed in Monday or Tuesday. I went with Panels A and C. I agree with everyone else... it seems the best place to start.
take care. I hope you can get some rest and once you are back in your routine, the D stops.
Carol
I think the other thing you have to take into consideration is how much stress you've been under.
I stayed with my dad while he had 3 hospitalizations within a 2 week period last November. Prior to that I had been able to get off of the PPI I had been taking (Dexilant). I took my food to the hospital (4 hours away) and ate the same foods that I was eating at home. Yet the second day of 'hospital duty' it was clear I needed to get back on the Dexilant. I'm sure it was just stress-- the worry, the hospital setting, the odors, no place to unwind, talking to doctors, having to be the one to report back to other relatives on Dad's progress, and sleeping in hotels or at a friends and the lack of sleep. Even when at his home I was constantly "on". So, although you may be flaring from some cross contamination, stress is a definite trigger too that I think cannot be ignored. Once I was back home for a couple of days I no longer needed the Dexilant.
Like you, I was happy to do that for my dad, but there's no denying it's draining, mentally and physically. For your sake I'm glad you are going home.
I am just now doing the Enterolab tests and hope to get them mailed in Monday or Tuesday. I went with Panels A and C. I agree with everyone else... it seems the best place to start.
take care. I hope you can get some rest and once you are back in your routine, the D stops.
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
Thank you all for your suggestions. I will do the EnteroLab as soon as I contact them and get the details, this week.
Carol, you're right. It's been very stressful. I look forward to sleeping in my own bed and sleeping through the night for the first time in 3 weeks.
Gabes and Paula, I have a lot to learn about histamines and nightshades. I grew up in New Mexico and tend to eat Mexican-type fare daily including beans, which are largely suspect now. I saw Polly's, Marliss' and Mary Beth's post about the Cordain book on Paleo Diet, the one he published in November. I was able to find it and download it to my Kindle last night. It's going to have my full attention, cover to cover.
I took Imodium twice yesterday and again today. I think I'm under control and safe to fly home tomorrow.
I LOVE this support group! I don't know what I'd do without you all.
Tex, when is your book coming out? I want a copy, autographed.
Hugs, Sharaine
Carol, you're right. It's been very stressful. I look forward to sleeping in my own bed and sleeping through the night for the first time in 3 weeks.
Gabes and Paula, I have a lot to learn about histamines and nightshades. I grew up in New Mexico and tend to eat Mexican-type fare daily including beans, which are largely suspect now. I saw Polly's, Marliss' and Mary Beth's post about the Cordain book on Paleo Diet, the one he published in November. I was able to find it and download it to my Kindle last night. It's going to have my full attention, cover to cover.
I took Imodium twice yesterday and again today. I think I'm under control and safe to fly home tomorrow.
I LOVE this support group! I don't know what I'd do without you all.
Tex, when is your book coming out? I want a copy, autographed.
Hugs, Sharaine
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Sharaine,
during that first 9 months post Dx, stress (mental, physical or emotional) was one of my biggest triggers.
and like removing food ingredients to avoid issues, i had to learn how to manage stress and budget out my mental, physical and emotional energies.
easier said than done when situations are out of your control.
these days i dont get a MC reaction to stress, more so it is a histamine reaction of headaches, nausea and vomitting that occurs once I slow down after a stressful period.
for me, i dont think one style of eating plan is the solution, you have to find what ingredients work for you and come up with an eating plan based on that, it can be a blend of ingredient rotation from MRT, ingredients that you can tolerate from Paleo, low inflammation/gut healing ingredients.
i would have never made it out of the MC maze without this group of amazing people,
safe trip home
during that first 9 months post Dx, stress (mental, physical or emotional) was one of my biggest triggers.
and like removing food ingredients to avoid issues, i had to learn how to manage stress and budget out my mental, physical and emotional energies.
easier said than done when situations are out of your control.
these days i dont get a MC reaction to stress, more so it is a histamine reaction of headaches, nausea and vomitting that occurs once I slow down after a stressful period.
for me, i dont think one style of eating plan is the solution, you have to find what ingredients work for you and come up with an eating plan based on that, it can be a blend of ingredient rotation from MRT, ingredients that you can tolerate from Paleo, low inflammation/gut healing ingredients.
i would have never made it out of the MC maze without this group of amazing people,
safe trip home
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Paula,
You asked how I knew I reacted to gluten and dairy. Dairy has been a problem for me over many years; I would get bloated and gassy after eating ice cream or drinking milk. Until I had this MC diagnosis, I just ignored the problem and dealt with the consequences.
I've suffered from migraines all of my adult life. No one could find the cause. When I read here that gluten can cause migraines and other intestinal problems, I eliminated gluten. One a couple of occasions I have been accidentally glutened and the result was migraines and diarrhea. Thus, I know I have to avoid gluten.
Now, I need to find out what my other triggers are because I'm having such a horrible flare.
I'm glad you found us. If you have any questions, please feel free to ask.
Sharaine
You asked how I knew I reacted to gluten and dairy. Dairy has been a problem for me over many years; I would get bloated and gassy after eating ice cream or drinking milk. Until I had this MC diagnosis, I just ignored the problem and dealt with the consequences.
I've suffered from migraines all of my adult life. No one could find the cause. When I read here that gluten can cause migraines and other intestinal problems, I eliminated gluten. One a couple of occasions I have been accidentally glutened and the result was migraines and diarrhea. Thus, I know I have to avoid gluten.
Now, I need to find out what my other triggers are because I'm having such a horrible flare.
I'm glad you found us. If you have any questions, please feel free to ask.
Sharaine
Sharaine,
Regarding the book, I was hoping to get it finished by sometime next month, but I keep rewriting parts, as I add new information, (because a lot of new information is becoming available these days), so it's going to take longer. Also, the board has been busier in recent months, and it's corn-planting time here in Central Texas, and so I'm not able to spend as much time writing as I'd like. I'm working on it whenever I can, though, and it shouldn't take very much longer.
I hope you can track down the remaining food problem, (or problems), soon.
Tex
Regarding the book, I was hoping to get it finished by sometime next month, but I keep rewriting parts, as I add new information, (because a lot of new information is becoming available these days), so it's going to take longer. Also, the board has been busier in recent months, and it's corn-planting time here in Central Texas, and so I'm not able to spend as much time writing as I'd like. I'm working on it whenever I can, though, and it shouldn't take very much longer.
I hope you can track down the remaining food problem, (or problems), soon.
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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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Thank you for the information, Sharaine. I thought for a minute that there was another way of testing for intolerances, but that you had decided you should do the Enterolab or MRT testing as they may be more specific.
Anyway, now that you're home, I hope things settle down for you, and that you start feeling better soon. There is a lot of stress involved when caring for a parent and being so far away from your own home at the same time (especially with MC), even if we don't feel like we are under stress at the time.
I haven't done the testing with Enterolab yet. But since I have been (to the best of my knowledge) GF/DF/SF for almost 3 months and I am still having D way too much. I think I am going to have to get testing done to find out what intolerances I really do have.
Take care of yourself.
Love,
Paula
Anyway, now that you're home, I hope things settle down for you, and that you start feeling better soon. There is a lot of stress involved when caring for a parent and being so far away from your own home at the same time (especially with MC), even if we don't feel like we are under stress at the time.
I haven't done the testing with Enterolab yet. But since I have been (to the best of my knowledge) GF/DF/SF for almost 3 months and I am still having D way too much. I think I am going to have to get testing done to find out what intolerances I really do have.
Take care of yourself.
Love,
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
-
Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Hi Paula and Sharaine:
I'm Linda and I've been away from this board (which saved my sanity ,too, btw) for far too long. I just posted in another thread that my advice to anyone who is still reacting even after removing gluten, dairy and soy from their diet, is to definitely get tested for other food intolerances, by any means available. I had tested with eterolab and afterwards was gf for over a year, and had been df for 10 plus years, but was still very, very sick. I just could not seem to figure out on my own what was causing it. MRT testing wasn't readily available where I live. Last summer I went to a Naturopath and got tested with a system, which uses muscle testing and a machine to identify food intolerances. She found 15 more foods/things that I was intolerant of, and by eliminating them, I have got my MC under control. And some of them were things I would never have suspected (like B vitamins, calcium, pineapple, coconut, citrus) The interesting add -on to this is that, using a protocol called NAET, she can treat certain food intolerances, and as a result of getting some of those treatments, I can now eat eggs which I knew I was really reactive to!
There are apparently thousands of NAET practitioners in Canada and the US. Just google it and I'm sure you can find a list with one near you.
An interesting fact is that almost all of the foods that I showed intolerant of, according to the NAET testing/treatment, are also ones that I should not eat if I were eating according to my blood type (as suggested in the book , "Eat for Your Blood Type".) So I wonder if maybe a person could, if other testing was not available, just adopt the diet suggested for their blood type, and get some good results?
Anyhow, I wish you both improved health soon,
Linda
I'm Linda and I've been away from this board (which saved my sanity ,too, btw) for far too long. I just posted in another thread that my advice to anyone who is still reacting even after removing gluten, dairy and soy from their diet, is to definitely get tested for other food intolerances, by any means available. I had tested with eterolab and afterwards was gf for over a year, and had been df for 10 plus years, but was still very, very sick. I just could not seem to figure out on my own what was causing it. MRT testing wasn't readily available where I live. Last summer I went to a Naturopath and got tested with a system, which uses muscle testing and a machine to identify food intolerances. She found 15 more foods/things that I was intolerant of, and by eliminating them, I have got my MC under control. And some of them were things I would never have suspected (like B vitamins, calcium, pineapple, coconut, citrus) The interesting add -on to this is that, using a protocol called NAET, she can treat certain food intolerances, and as a result of getting some of those treatments, I can now eat eggs which I knew I was really reactive to!
There are apparently thousands of NAET practitioners in Canada and the US. Just google it and I'm sure you can find a list with one near you.
An interesting fact is that almost all of the foods that I showed intolerant of, according to the NAET testing/treatment, are also ones that I should not eat if I were eating according to my blood type (as suggested in the book , "Eat for Your Blood Type".) So I wonder if maybe a person could, if other testing was not available, just adopt the diet suggested for their blood type, and get some good results?
Anyhow, I wish you both improved health soon,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Hello Linda and All,
WOW, Linda, I've never heard of "Eat for Your Blood Type". I just found out I have a rare blood type of A-. I knew my type, but didn't know it was rather rare until a couple of weeks ago. I'll have to look into that book. I will also look into NAET.
Thanks for all of your supportive comments, my fellow Potty People. I came home and had two more incidents of D leaking all over me. Yesterday and today are better. Needless to say, I'm eating very cautiously.
I will say this. When I was on Entocort, all of my aches and pains went away and my poop was a not very soft. I don't know how I'll do the Enterolab tests right now since there's no poop to be caught. (Only on this board would someone say such things! )
Again, my thanks for your support. I REALLY need and appreciate it!
Sharaine
WOW, Linda, I've never heard of "Eat for Your Blood Type". I just found out I have a rare blood type of A-. I knew my type, but didn't know it was rather rare until a couple of weeks ago. I'll have to look into that book. I will also look into NAET.
Thanks for all of your supportive comments, my fellow Potty People. I came home and had two more incidents of D leaking all over me. Yesterday and today are better. Needless to say, I'm eating very cautiously.
I will say this. When I was on Entocort, all of my aches and pains went away and my poop was a not very soft. I don't know how I'll do the Enterolab tests right now since there's no poop to be caught. (Only on this board would someone say such things! )
Again, my thanks for your support. I REALLY need and appreciate it!
Sharaine
