Hi Terri,
Admittedly, I am not as faithful to my diet as I should be. I still put too much faith in restaurants that "say" they are gluten-free, etc. I get "burned" regularly and my whole healing process resets a bit. It is very hard, still, after all these years, to resist some of the foods that I see others eat. So sometimes, I just give in to my desires and do the wrong thing. Which is why, I am sure, I feel average but not as great as I want to be, or think i can be.
Cheer up. We all understand and truly empathize with you.
Regards,
Rich
This disease is so depressing even without flaring
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Monique,
I try to stick to a rule of 90% paleo but I'm not perfect. I don't have a huge variety of vegetables yet and I went through a stage where I had to back off the fruit because my gut seemed irritated more than it should. It really wasn't all that hard to avoid the dyes and sulfites. Since we tend to eat simply those additives aren't present in the fresh foods we eat. The only real processed food I eat is Lays Naturals reduced fat Potato chips. I do eat Oscar Meyer deli turkey and there are nitrates there, but overall it hasn't been as hard as one would think.
carol
I try to stick to a rule of 90% paleo but I'm not perfect. I don't have a huge variety of vegetables yet and I went through a stage where I had to back off the fruit because my gut seemed irritated more than it should. It really wasn't all that hard to avoid the dyes and sulfites. Since we tend to eat simply those additives aren't present in the fresh foods we eat. The only real processed food I eat is Lays Naturals reduced fat Potato chips. I do eat Oscar Meyer deli turkey and there are nitrates there, but overall it hasn't been as hard as one would think.
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
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wmonique2
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this disease is so depressing...
Carol,
Thanks. Actually I was thinking that I wouldn't have any problems with dyes and additives either because I tend to go for real food and not for processed foods. We never had any processed foods growing up in Europe. My mother went everyday to the market and bought fresh foods that she cooked that same day. When I want a sweet treat I go for dried fruits like pineapple or dates but those have sulfites or nitrites for sure.
Carol, how long has it been since you took the test? And do you feel like it it making a difference in how you feel by fine-tuning your diet?
Monique
Thanks. Actually I was thinking that I wouldn't have any problems with dyes and additives either because I tend to go for real food and not for processed foods. We never had any processed foods growing up in Europe. My mother went everyday to the market and bought fresh foods that she cooked that same day. When I want a sweet treat I go for dried fruits like pineapple or dates but those have sulfites or nitrites for sure.
Carol, how long has it been since you took the test? And do you feel like it it making a difference in how you feel by fine-tuning your diet?
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Rich...thank you! I too put too much faith in the restaurants. I'm able to eat at 3 of them...Red Robin, Rockfish Grill and Macaroni Grill. I guess I keep going to them because I haven't really reacted after eating at these restaurants. And one of them sauteed my spinach in garlic butter when I told them specifically that I can't have dairy. But I ate it anyway and luckily had no reaction. Apparently I can get away with dairy every now and then. I have no business eating at any restaurants as I know there is always a little contamination even though I don't seem to react so far. Just don't want to give up the luxury of eating out....would kill me. It's hard enough as it is.
Terri
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
I find I have pretty good luck at restaurants, as long as I order plain grilled unseasoned meat or fish. I ask them to leave everything else off the plate unless they can assure me of plain well-cooked vegetables as a side. I'll put a muffin in my bag just in case i want something for dessert. Seems like individual restaurants rather than chains are most helpful. But Chili's and Macaroni Grill have been good about accommodating.
Jean
Jean
I totally get where you are coming Terri, from when it comes to restaurants. I go, do my best, and then hope for the best. I stayed away though for the first six months of recovery. Now that tomato and spices are ok, I do well with Mexican ( with no cheese, corn tortillas). Now that i can do salads, I usually am ok with them- especially if i get oil and vinegar. And if I go to my local Chinese place, I can ask them to fix a stir fry chicken, broc, mushroom dish with no soy and i eat it over white rice. Hamburgers with no bun is also a "go to".... We make do :)
Leah
Leah
Monique,
I had my MRT tests done in May 2012. I do feel like it's made a difference for me. It was a short cut for me to get a much quieter gut and probably a way to slow down inflammation and my seasonal allergies too. I had eliminated the big 4 and was still having mini-flares but didn't know why. I was hoping it would give me some insight.
For example, my go-to fruits would have been pears and peaches, but it turns out that I react to those fruits. Yet oranges were said to be okay-- so I challenged them and they are okay. I can eat grapes and have no gurgling, no issues at all. Strawberries too. Of course even though they came out in the green areas they still should be challenged. I knew to try squashes but to avoid green beans (another of my earlier go-to foods) after getting my results. Little by little I have managed to get better. I consider myself in remission now. I still dig out my MRT list from time to time and examine it to see if I can challenge another food, or if my gut has felt unsettled I examine the list and can usually find a suspect or two that I need to be wary of.
I feel like I've done okay on the Paleo because I've altered it based on my MRT results. So I'm glad I did it. For me it gave me more data to act on.
Carol
I had my MRT tests done in May 2012. I do feel like it's made a difference for me. It was a short cut for me to get a much quieter gut and probably a way to slow down inflammation and my seasonal allergies too. I had eliminated the big 4 and was still having mini-flares but didn't know why. I was hoping it would give me some insight.
For example, my go-to fruits would have been pears and peaches, but it turns out that I react to those fruits. Yet oranges were said to be okay-- so I challenged them and they are okay. I can eat grapes and have no gurgling, no issues at all. Strawberries too. Of course even though they came out in the green areas they still should be challenged. I knew to try squashes but to avoid green beans (another of my earlier go-to foods) after getting my results. Little by little I have managed to get better. I consider myself in remission now. I still dig out my MRT list from time to time and examine it to see if I can challenge another food, or if my gut has felt unsettled I examine the list and can usually find a suspect or two that I need to be wary of.
I feel like I've done okay on the Paleo because I've altered it based on my MRT results. So I'm glad I did it. For me it gave me more data to act on.
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
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wmonique2
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this disease is so depressing...
Carol,
Thank you so much for your input. It helps me make a decision. I have eliminated so much (most fruits and vegetables because of the fiber) and also all the big four that I was wondering if I need to do the MRT period.
For the last 4 days that I've returned to elavil, I am amazed how much better I am doing go. Elavil was the answer.
What other meds do you take? I take mesalamine (asacol) and elavil. Isn't paleo mostly fruits and vegetables and meats? Do you have rice or potatoes? I thought that paleo was about eliminating grains...
Monique
Thank you so much for your input. It helps me make a decision. I have eliminated so much (most fruits and vegetables because of the fiber) and also all the big four that I was wondering if I need to do the MRT period.
For the last 4 days that I've returned to elavil, I am amazed how much better I am doing go. Elavil was the answer.
What other meds do you take? I take mesalamine (asacol) and elavil. Isn't paleo mostly fruits and vegetables and meats? Do you have rice or potatoes? I thought that paleo was about eliminating grains...
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Hi Monique,
Paleo is primarily grain and legume free. So yes- meats, vegetable, fruits and nuts. Potatoes are not Paleo nor is rice, but that's where I allow myself the other 10%. I'll have potatoes 1-2 times a week or fried rice from my favorite Chinese restaurant when I don't want to cook. And I won't give up my Enjoy Life chocolate. Otherwise I try to stick to the plan.
One thing I did with my MRT testing is I went through and marked the foods that are also high histamine foods. I don't avoid them completely but at times like now when my seasonal allergies are in full bloom I lower my consumption of them. For example, I have very little MRT reaction to mushrooms but I know that I'm very allergic to molds and fungus. Previous allergy testing indicated I should avoid them and fermented foods during the height of allergy season and I'm sure that's still true.
I think it's important for people to realize they need to follow Enterolab's recommendations first then MRT. For example, my MRT testing says that I have virtually no reaction to pork but Enterolab found antibodies in reaction to pork. So I avoid pork. Same with yogurt. I had virtually no MRT reaction but Enterolab results where higher than 10units, so dairy is out. This is why the rotation diet that follows the MRT testing wasn't going to be helpful for me.
I hope that helps. This is how I've tweaked my diet. Lots of rotating foods, not eating too much of the same thing for too long.
I almost forgot you asked about meds-- not much at this point. 10mg Amitriptyline daily and 60mg Dexilant (which I'm hoping to decrease this summer) and Claritin. Plus calcium, a multivitamin, 5000 Vitamin D3, soon to add an Omega 3 fish oil.
Carol
Paleo is primarily grain and legume free. So yes- meats, vegetable, fruits and nuts. Potatoes are not Paleo nor is rice, but that's where I allow myself the other 10%. I'll have potatoes 1-2 times a week or fried rice from my favorite Chinese restaurant when I don't want to cook. And I won't give up my Enjoy Life chocolate. Otherwise I try to stick to the plan.
One thing I did with my MRT testing is I went through and marked the foods that are also high histamine foods. I don't avoid them completely but at times like now when my seasonal allergies are in full bloom I lower my consumption of them. For example, I have very little MRT reaction to mushrooms but I know that I'm very allergic to molds and fungus. Previous allergy testing indicated I should avoid them and fermented foods during the height of allergy season and I'm sure that's still true.
I think it's important for people to realize they need to follow Enterolab's recommendations first then MRT. For example, my MRT testing says that I have virtually no reaction to pork but Enterolab found antibodies in reaction to pork. So I avoid pork. Same with yogurt. I had virtually no MRT reaction but Enterolab results where higher than 10units, so dairy is out. This is why the rotation diet that follows the MRT testing wasn't going to be helpful for me.
I hope that helps. This is how I've tweaked my diet. Lots of rotating foods, not eating too much of the same thing for too long.
I almost forgot you asked about meds-- not much at this point. 10mg Amitriptyline daily and 60mg Dexilant (which I'm hoping to decrease this summer) and Claritin. Plus calcium, a multivitamin, 5000 Vitamin D3, soon to add an Omega 3 fish oil.
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
I believe you're right on target with that assessment, and I totally agree with your approach. According to research, it's the total histamine load that matters, not individual amounts in certain foods, so it's certainly logical that we have to be extra careful during allergy season. And on the other hand, histamines in certain foods may not be as risky for some of us when those other histamine sources (mast cell triggers) are not present.Carol wrote:One thing I did with my MRT testing is I went through and marked the foods that are also high histamine foods. I don't avoid them completely but at times like now when my seasonal allergies are in full bloom I lower my consumption of them. For example, I have very little MRT reaction to mushrooms but I know that I'm very allergic to molds and fungus. Previous allergy testing indicated I should avoid them and fermented foods during the height of allergy season and I'm sure that's still true.
That's also an important point you made about the details of the two testing methods. EnteroLab results virtually always trump MRT. Where MRT shines, is in the extra insight it provides for the many foods and chemicals for which we have no other practical testing procedure available.
Thanks,
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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this disease is so depressing...
Carol,
Thank you so much for explaining it all. It is really great help. It's amazing that you take no meds for your LC except the antihistamine and elavil. I am working on getting there. Can't wait for the day I get rid of my mesalamine. It raises my liver enzymes and it disturbs me enormously.
As Tex pointed out, good point there about how you look at histamine and how you deal with it. I am very diligent with the enterolab results. I am not one of those who indulges and take chances. Maybe because I've been deprived my whole life and discipline is not an issue for me.
When things quiet down I'll do the MRT test so that I can fine tune my diet and see if I can make some progress. I know I can't do the paleo diet because it's too much fruits and vegies for me. My whole life I ate the Mediterranean diet but the excessive fruits and vegies sent my colon reeling. So I will, forever, have to be careful with the amount of fiber I consume.
I notice you take a PPI. I had a bit of acid reflux a few times and I took D3 for it. 5000 didn't do for me. I take 12,000 -- 4000 for each meal and it worked. So it's a good thing.
Again, thanks a million. I really appreciate your help. It's good to know what others are doing...I don't feel like I am in a dark tunnel all by myself.
Regards,
Monique
Thank you so much for explaining it all. It is really great help. It's amazing that you take no meds for your LC except the antihistamine and elavil. I am working on getting there. Can't wait for the day I get rid of my mesalamine. It raises my liver enzymes and it disturbs me enormously.
As Tex pointed out, good point there about how you look at histamine and how you deal with it. I am very diligent with the enterolab results. I am not one of those who indulges and take chances. Maybe because I've been deprived my whole life and discipline is not an issue for me.
When things quiet down I'll do the MRT test so that I can fine tune my diet and see if I can make some progress. I know I can't do the paleo diet because it's too much fruits and vegies for me. My whole life I ate the Mediterranean diet but the excessive fruits and vegies sent my colon reeling. So I will, forever, have to be careful with the amount of fiber I consume.
I notice you take a PPI. I had a bit of acid reflux a few times and I took D3 for it. 5000 didn't do for me. I take 12,000 -- 4000 for each meal and it worked. So it's a good thing.
Again, thanks a million. I really appreciate your help. It's good to know what others are doing...I don't feel like I am in a dark tunnel all by myself.
Regards,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Tex, thanks for the confirmation. It made sense to me to watch the histamines but it's good to hear that it makes sense with the research as well. It's a weekly juggling act, but it's not impossible.
Monique, you are definitely not alone and by the number of newbies I see posting every week that dark tunnel could be getting crowded. I think together we can get it illuminated.
Carol
Monique, you are definitely not alone and by the number of newbies I see posting every week that dark tunnel could be getting crowded. I think together we can get it illuminated.
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
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SmallTownLady2U
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Hi Terri, I feel so deeply for you!I wish these diseases on NO ONE! I am so tired of chicken and rice and being tired.I hope counseling helps.I would go to if I was not so tired.I can do so little it is frustrating. My D is a lot better now that I have been on entocourt almost a month. I am still on 10mg Elevil. My appetite is back but I cant stand chicken and rice anymore, I also eat 1 gf white bread in the morning.Depression is frustrating because you can not just snap out of it.I have break downs daily, it seems one good day, two bad, however we just have to hang in there.I wish we all lived closer together, we could have are own poop group.I am really trying not to have so many expectations of the way I think things should be and just except them as they are...I have to change my thinking continuously and with that being said I also have to give myself permission to be sad or mad even if I am hiding it from everyone else. We are so much harder on ourselves.Please know you are not alone and I pray that one day we will look back at these times and say we made it threw!We must be a lot stronger then we think because we continue to fight for our lives.Literally. God Bless Terri, you are in my prayers! : )
Collagenous colitis and lymphocytic colitis March/ 2013
Celiac Disease November/2009
Celiac Disease November/2009
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wmonique2
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this disease is so depressing...
smalltownlady,
Why aren't you eating other things other than chicken and rice? Have you tried?
Monique
Why aren't you eating other things other than chicken and rice? Have you tried?
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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SmallTownLady2U
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Hi Monique, the dietitian and the elimination diet stated chicken and rice, I really am scared to try something new and don't really know what to try. I have to leave my house often to pick up the kids and go to work. I am also a celiac and have no idea what I can try and be safe with, I don't even know if we are allowed spices. This is all so confusing to me and I am so tired of it all. I have almost no energy at all. I really need help with the diet.
Collagenous colitis and lymphocytic colitis March/ 2013
Celiac Disease November/2009
Celiac Disease November/2009