Hi Friends,
Three years ago when I was diagnosed I made myself a promise: that I would be in remission within 3 years and that I'll do WHATEVER it takes to get there. That was the optimist in me.
Three years later, after many trials and tribulations I am, right now, at about the same point I was three years ago. Going through a month long flare-up with no end in sight. Not in remission. Not even close. And it isn't for lack of trying.
The more things change, the more they remain the same, the French saying goes.
Do you know the difference between an optimist and a pessimist?
A pessimist is an optimist with experience.
Keep on trying because it is our only choice.
Monique
The Optimist's Assessment
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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wmonique2
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The Optimist's Assessment
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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MaggieRedwings
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Morning Monique,
Well I have to say that I pretty much had the same target as you when diagnosed. Here I am after 12+ years and have progressed somewhat but still feel that I am pretty much the same and have tried all of the diets in the book and have just learned to live with where I am. Good days, bad flares and just chugging along. That is the optimist in me.
Love, Maggie
Well I have to say that I pretty much had the same target as you when diagnosed. Here I am after 12+ years and have progressed somewhat but still feel that I am pretty much the same and have tried all of the diets in the book and have just learned to live with where I am. Good days, bad flares and just chugging along. That is the optimist in me.
Love, Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hi there Monique! (And a big hello to Maggie too)
I do love your attitude about this very humbling disease. Just a thought.....have you done the MRT (mediated release test)?
After 10 or 11 years with MC, I did the MRT. Although I had discovered many of my food sensitivities on my own, I rarely seemed to experience any length of time with normal BMs. I just thought it was a fact of life with MC. However, once I eliminated my sensitive foods as determined by MRT, I learned that it is possible to be "normal". I never would have expected some of the foods that were problems for me and that I was eating regularly....yellow squash (but zucchini is OK), white potato (but sweet potato is OK), pinto beans, sesame, vanilla, carrots, celery, almonds and cashews (but walnuts or pecans are OK).
It was exactly 3 years ago that I did the MRT. One interesting observation - it seems that the same sensitivities have persisted. Whenever I eat one of the problem foods, it still affects me negatively. But when I stay away from all of them, I am as close to normal as I ever get.
Hang in there, my friend.
Love,
Polly
P.S. Did you have the gene test done? If so, are you a "double DQ" by any chance?
I do love your attitude about this very humbling disease. Just a thought.....have you done the MRT (mediated release test)?
After 10 or 11 years with MC, I did the MRT. Although I had discovered many of my food sensitivities on my own, I rarely seemed to experience any length of time with normal BMs. I just thought it was a fact of life with MC. However, once I eliminated my sensitive foods as determined by MRT, I learned that it is possible to be "normal". I never would have expected some of the foods that were problems for me and that I was eating regularly....yellow squash (but zucchini is OK), white potato (but sweet potato is OK), pinto beans, sesame, vanilla, carrots, celery, almonds and cashews (but walnuts or pecans are OK).
It was exactly 3 years ago that I did the MRT. One interesting observation - it seems that the same sensitivities have persisted. Whenever I eat one of the problem foods, it still affects me negatively. But when I stay away from all of them, I am as close to normal as I ever get.
Hang in there, my friend.
Love,
Polly
P.S. Did you have the gene test done? If so, are you a "double DQ" by any chance?
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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wmonique2
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The Optimist's Assessment
Thank you to every one that chimed in---Lori, Maggie and all
Polly,
Good to see you. And thank you for sharing your information. The MRT test is the only test I haven't done. I have been following a low-histamine and low fiber diet in addition to eliminating everything Enterolab tested for (gluten, soy and walnuts). I was OK on dairy but I eliminated it just in case. I have already pretty much limited my food choices to very few. But maybe that is not enough or perhaps it needs to be more finely tuned.
Mind you I am on Lialda, Elavil and Allegra.
I got discouraged from doing it by several board members who indicated that they got so many "yellows" foods that were inconclusive. (I think it was Z. who said that she got 20 yellows). I didn't know if it justified the cost.
I think that I have to do it if I want to avoid flare-ups like the one I am going through right now. It's been hellish since I am too sick to function.
Apropos---has anybody found a lab that sells it cheaper than the 600 bucks Oxford biomedical sells it for? I was also wondering if I get my doctor to order it if it would be cheaper for him...
Love,
Monique
Polly,
Good to see you. And thank you for sharing your information. The MRT test is the only test I haven't done. I have been following a low-histamine and low fiber diet in addition to eliminating everything Enterolab tested for (gluten, soy and walnuts). I was OK on dairy but I eliminated it just in case. I have already pretty much limited my food choices to very few. But maybe that is not enough or perhaps it needs to be more finely tuned.
Mind you I am on Lialda, Elavil and Allegra.
I got discouraged from doing it by several board members who indicated that they got so many "yellows" foods that were inconclusive. (I think it was Z. who said that she got 20 yellows). I didn't know if it justified the cost.
I think that I have to do it if I want to avoid flare-ups like the one I am going through right now. It's been hellish since I am too sick to function.
Apropos---has anybody found a lab that sells it cheaper than the 600 bucks Oxford biomedical sells it for? I was also wondering if I get my doctor to order it if it would be cheaper for him...
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Hi again Monique!
Yes, I also had lots of yellows - 31 to be exact! However, I have found that, for the most part, I truly am sensitive to them. There are one or two that I can tolerate, but they were "just over the border" from green (safe) into yellow. Despite our initial optimism here, I have not found that over time I could add yellows back into my diet. And no reds at all. The biggest issue for some of us was the fact that some (very few) of the green (safe) foods turned out to also be yellow (no-nos), but you find this out fairly quickly when you add one new food a day for a month or more.
To me, the issue was the requirement for the nutritional consultation. Unless the nutritionist is intimately familiar with MC, the advice and menu planning won't work. And the menu is planned to be "balanced" according to accepted standards (example - that a grain or starch is a necessary part of a meal), which, of course, may not be applicable to MC (especially those on a paleo diet) at all. If you could get the blood test without the nutritional piece, I would recommend it. But you probably can't. Also, the test would likely be a waste of money if you weren't completely determined to avoid any and all problematic foods that are identified. Like I said, here it is 3 years later, and I still have the same problems with those yellow foods.
When I had my test, Oxford was the only lab offering it. Don't know about now. If you want to get advice on MRT from the expert, I'm sure Mary Beth would be happy to answer a PM.
Do you know what caused your flare-up?
Love,
Polly
Yes, I also had lots of yellows - 31 to be exact! However, I have found that, for the most part, I truly am sensitive to them. There are one or two that I can tolerate, but they were "just over the border" from green (safe) into yellow. Despite our initial optimism here, I have not found that over time I could add yellows back into my diet. And no reds at all. The biggest issue for some of us was the fact that some (very few) of the green (safe) foods turned out to also be yellow (no-nos), but you find this out fairly quickly when you add one new food a day for a month or more.
To me, the issue was the requirement for the nutritional consultation. Unless the nutritionist is intimately familiar with MC, the advice and menu planning won't work. And the menu is planned to be "balanced" according to accepted standards (example - that a grain or starch is a necessary part of a meal), which, of course, may not be applicable to MC (especially those on a paleo diet) at all. If you could get the blood test without the nutritional piece, I would recommend it. But you probably can't. Also, the test would likely be a waste of money if you weren't completely determined to avoid any and all problematic foods that are identified. Like I said, here it is 3 years later, and I still have the same problems with those yellow foods.
When I had my test, Oxford was the only lab offering it. Don't know about now. If you want to get advice on MRT from the expert, I'm sure Mary Beth would be happy to answer a PM.
Do you know what caused your flare-up?
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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wmonique2
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Polly,
I forgot to answer your question: no, I didn't have the gene test. Just the double panel at Enterolab.
A little history here: what I did have is a horrible case of the infamous flesh-eating-bacteria (aeromonas) internally that I got at the onset of LC from fresh salmon I bought at the supermarket. I was hospitalized near death because my genial doctor was treating me for candida when the lab report clearly stated that I had aeromonas. He missed that part of the lab report. So, they battered by system with antibiotics for 8 straight days. And it is, I believe, the reason why I am so slow in recovering notwithstanding all of my efforts. That was one nasty infection.
Thanks, Polly.
Love,
Monique
I forgot to answer your question: no, I didn't have the gene test. Just the double panel at Enterolab.
A little history here: what I did have is a horrible case of the infamous flesh-eating-bacteria (aeromonas) internally that I got at the onset of LC from fresh salmon I bought at the supermarket. I was hospitalized near death because my genial doctor was treating me for candida when the lab report clearly stated that I had aeromonas. He missed that part of the lab report. So, they battered by system with antibiotics for 8 straight days. And it is, I believe, the reason why I am so slow in recovering notwithstanding all of my efforts. That was one nasty infection.
Thanks, Polly.
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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wmonique2
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Polly,
I wouldn't have any problems eliminating any or all foods that the MRT test says are problematic. With 40 years of type 1 diabetes, I am well-trained and disciplined to follow the rules. No food is worth getting sick over it.
I don't care about the nutritional advice they dispense. I am my own nutritional advisor and I'll test the foods one by one. I do eat yams, carrots, red potatoes, rice, fish.
I have no idea what caused this flare-up. I went to some xmas parties but stayed away from the food. Ate some cheese at one party and some bacon. I did eat some GF bread at one party. I don't usually eat GF bread because of the xanthum gum and guar gum. Maybe that was the culprit that triggered this avalanche.
Love,
Monique
I wouldn't have any problems eliminating any or all foods that the MRT test says are problematic. With 40 years of type 1 diabetes, I am well-trained and disciplined to follow the rules. No food is worth getting sick over it.
I don't care about the nutritional advice they dispense. I am my own nutritional advisor and I'll test the foods one by one. I do eat yams, carrots, red potatoes, rice, fish.
I have no idea what caused this flare-up. I went to some xmas parties but stayed away from the food. Ate some cheese at one party and some bacon. I did eat some GF bread at one party. I don't usually eat GF bread because of the xanthum gum and guar gum. Maybe that was the culprit that triggered this avalanche.
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
A few years ago, someone on this board ordered the test alone for something like $350 bucks or so, as I recall. But I can't remember who it was, or where they ordered the test. Does anyone remember any clues about this?
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.
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wmonique2
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the optimist assessment
Tex.
I just searched the archives and I remembered Nancym metioning something about it last year when she was taking the test. I found the thread and she ordered it from True Health Labs but they still want their 600 bucks. I am gonna keep looking.
Monique
I just searched the archives and I remembered Nancym metioning something about it last year when she was taking the test. I found the thread and she ordered it from True Health Labs but they still want their 600 bucks. I am gonna keep looking.
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Monique-- I ordered my MRT tests through True Health Labs but they were using Signet Laboratories (who I think developed the tests) at the time, not Oxford. I spent around $400 (no more than $400). You may want to check or research Signet Labs too. Like Polly said they want you to do the LEAP diet but I just ignored that. They sent me my results and a sample diet and I studied the results and tossed the diet.
What I REALLY wanted from the results was not so much the food results but the 30 chemicals and additives. I could eventually test foods but how would I ever know if there was an additive or chemical added that I react to? I did find it valuable overall. I only had 1 red, many yellows, but just as many greens which I have carefully tested. Basically I didn't waste time testing yellows-- I just don't eat them. I test high greens. So far all very low and low greens have been okay for me.
good luck,
Carol
What I REALLY wanted from the results was not so much the food results but the 30 chemicals and additives. I could eventually test foods but how would I ever know if there was an additive or chemical added that I react to? I did find it valuable overall. I only had 1 red, many yellows, but just as many greens which I have carefully tested. Basically I didn't waste time testing yellows-- I just don't eat them. I test high greens. So far all very low and low greens have been okay for me.
good luck,
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
Hi All,
Ooops, I think it was Signet Lab that I used - if it was the original and only one offering the test 3 years ago.
Like Carol, I found the MRT valuable overall. It may not be as worthwhile for those with few sensitivities, but for those of us with so many, it can really make a difference. Also like Carol, I ditched the LEAP menu that was sent me and designed my own, starting with the least sensitive green (safest) foods and moving upward, adding one new food a day. It is very important to keep a detailed journal while doing this, BTW. Oh, I should add that Mary Beth here was invaluable in helping me to plan my strategy. Thanks again, MB.
Another value I found with this test. Two years ago I went into a wicked flare (I was taking care of my brother with pancreatic cancer and often eating unsafely and on the run). I discovered that I could go back to the "lowest" greens (least sensitive foods) for a while to help end the flare. Now, whenever I am experiencing increased stress or eat something unknowingly while out, I go right back to my lowest green foods and nip any flare in the bud.
Monique, with your longterm experience with your diabetic diet, you should do very well following the menus you devise after learning of your sensitivities. You of all people would not have a problem with a restricted diet. Of course, it is a double whammy, because you will have to juggle 2 different sets of food restrictions. But you are up to the task! BTW, how many gms of carbs do you eat most days?
Love,
Polly
Ooops, I think it was Signet Lab that I used - if it was the original and only one offering the test 3 years ago.
Like Carol, I found the MRT valuable overall. It may not be as worthwhile for those with few sensitivities, but for those of us with so many, it can really make a difference. Also like Carol, I ditched the LEAP menu that was sent me and designed my own, starting with the least sensitive green (safest) foods and moving upward, adding one new food a day. It is very important to keep a detailed journal while doing this, BTW. Oh, I should add that Mary Beth here was invaluable in helping me to plan my strategy. Thanks again, MB.
Another value I found with this test. Two years ago I went into a wicked flare (I was taking care of my brother with pancreatic cancer and often eating unsafely and on the run). I discovered that I could go back to the "lowest" greens (least sensitive foods) for a while to help end the flare. Now, whenever I am experiencing increased stress or eat something unknowingly while out, I go right back to my lowest green foods and nip any flare in the bud.
Monique, with your longterm experience with your diabetic diet, you should do very well following the menus you devise after learning of your sensitivities. You of all people would not have a problem with a restricted diet. Of course, it is a double whammy, because you will have to juggle 2 different sets of food restrictions. But you are up to the task! BTW, how many gms of carbs do you eat most days?
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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wmonique2
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The optimist's Assessment
Hi Polly,
Thanks for explaining your strategy. MB gave me the name of a dietitian to order the test from. Like you, I am not interested in the diet. I just want the test. No, I wouldn't have any problem following any diet. I am accustomed to juggling insulin/carbs/energy expenditure. I am on an insulin pump for over 20 years and you have to be very regimented to be on it and you have to know what you're doing.
You asked how many carbs a day I eat: I try to have no more than 30 gr per meal so I don't spike up too much. Sometimes less. My post-prandials tend to spike up if I have more. I have about 20-25 units of insulin in a 24 hour cycle. Basals and boluses.
I am not completely sure that it was something I ate that caused this flare-up. I started taking glucosamine/chondroitin + 2000 mg of MSM a month ago and I am not convinced that it is not the culprit. I stopped taking it a few days ago. The problems started after I began taking it and, of course, I attributed everything to the diet even though I eat the same safe foods everyday.
However, I am going to take the MRT soon as I figure out where it is the cheapest.
Carol--thank you for reminding me where you took that test. I found the thread where you had said it was with True Health lab. I'll research Signet, see if they are around.
Leah--thank you, my friend.
Love,
Monique
Thanks for explaining your strategy. MB gave me the name of a dietitian to order the test from. Like you, I am not interested in the diet. I just want the test. No, I wouldn't have any problem following any diet. I am accustomed to juggling insulin/carbs/energy expenditure. I am on an insulin pump for over 20 years and you have to be very regimented to be on it and you have to know what you're doing.
You asked how many carbs a day I eat: I try to have no more than 30 gr per meal so I don't spike up too much. Sometimes less. My post-prandials tend to spike up if I have more. I have about 20-25 units of insulin in a 24 hour cycle. Basals and boluses.
I am not completely sure that it was something I ate that caused this flare-up. I started taking glucosamine/chondroitin + 2000 mg of MSM a month ago and I am not convinced that it is not the culprit. I stopped taking it a few days ago. The problems started after I began taking it and, of course, I attributed everything to the diet even though I eat the same safe foods everyday.
However, I am going to take the MRT soon as I figure out where it is the cheapest.
Carol--thank you for reminding me where you took that test. I found the thread where you had said it was with True Health lab. I'll research Signet, see if they are around.
Leah--thank you, my friend.
Love,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
The reason for the confusion about "Signet Labs" is that the one that we are discussing here discovered several years ago that they were not the only "Signet Labs" in existence, and apparently they were forced to change their name, so they chose "Oxford Biomedical Technologies". If I recall correctly, the other lab specializes in strength of materials testing, and since they are a much older company, they had rights to the name.
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.