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Kari,
So glad to hear you are doing well. My progress was very similar . . . little by little I noticed improvement. Good Job!!!
Did you test for eggs through Enterolab? I'm always a little suspicious of mast cell problems when people get D from seafood and eggs because they are high in histamine. Older eggs tend to be more problematic than fresh eggs (if the white is very watery they are old) because there is more histamine buid-up. Just a thought - it's my theory that mast cells are a problem for more people than we realize.
You are eating a fair amount of fiber - wonder if that's why Norman is only rarely visiting. Maybe do a trial for a few days avoiding your high fiber foods (beans, hummus, apples etc) and maybe also onion - it's a no-no on the FODMAP diet for diarrhea. You might still need a bit lower fiber intake or you might be reacting to a certain food. A food journal could help isolate a potential problem.
Thanks for sharing your progress - it's always great to hear people are getting better.
Mary Beth
Good News
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Mary Beth,
You're making a good point - I've been wondering about the fiber myself, and thought about decreasing it. It has been a process of tiny steps for me so far, and perhaps this will be my next effort in order to "firm things up" a bit more. I did not test positive for eggs at Enterolab, and seemed to be OK with them, but the other day I felt very nauseous and unwell after eating bacon and eggs, so thought I'd keep away from them for now.
I have been keeping a food journal for at least a month now, and find it very helpful. Thanks for your encouragement.
Kari
You're making a good point - I've been wondering about the fiber myself, and thought about decreasing it. It has been a process of tiny steps for me so far, and perhaps this will be my next effort in order to "firm things up" a bit more. I did not test positive for eggs at Enterolab, and seemed to be OK with them, but the other day I felt very nauseous and unwell after eating bacon and eggs, so thought I'd keep away from them for now.
I have been keeping a food journal for at least a month now, and find it very helpful. Thanks for your encouragement.
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Hi Everyone,
Unfortunately, my good news are not so good any longer. Ever since I posted the above update, I've had a very hard struggle. I really thought I had everything pretty much figured out, and it was going to be just a matter of a few days before Norman came to visit - NOT!!!!! This disease is a true monster, and like Tex said "we have to wear the disease down, and not let it wear us down". MC still has the upper hand, but I'm fighting as hard as I can, and plan on continuing the fight.
When things started going downhill again, I decided to take a "maintenance dose" of pepto every day - sort of what people are doing with entocort. I quickly realized that it would not really help. Then I decided to try imodium - lo and behold I had my first almost Norman!!! I decided to try a maintenance dose of Imodium. After a couple of days I got in trouble, as it gave me stomach pain that I had not experienced before - so there went that idea. So now I was back to experimenting with diet again.
Mary Beth had posted that she thought I might be getting too much fiber, so I tried cutting out most of the fiber. It helped a little bit, but not enough. Then I discovered that I have an egg sensitivity - so there went the eggs. Same thing with shrimps and same thing with hemp milk. Meanwhile, my weight has kept dropping - I've now lost over 20 lbs. since I started this food elimination program in July. I might add that I didn't need to lose any weight to begin with. Obviously, I'm not getting enough calories to sustain my weight, so I'm almost always feeling light headed.
I have finally realized that the only way for me to get a handle on what I can eat, is to do the elimination diet. So here is my new list of foods that I will eat:
Pork
Rice
Arrowhead organic Rice and Shine hot cereal
Avocado
Unsweetened coconut flakes
My only flavorings will be fresh ginger, fresh lemon, salt and pepper, and I will cook with olive oil. The only drinks I'm allowing myself are water and a single shot of espresso without sweetener.
I started this diet yesterday, with the inclusion of bananas, but tomorrow I'm eliminating the bananas, since I think they might be a problem.
Well, if you don't hear from me again, it means I lost my mind and can no longer function :):):).
Love,
Kari
Unfortunately, my good news are not so good any longer. Ever since I posted the above update, I've had a very hard struggle. I really thought I had everything pretty much figured out, and it was going to be just a matter of a few days before Norman came to visit - NOT!!!!! This disease is a true monster, and like Tex said "we have to wear the disease down, and not let it wear us down". MC still has the upper hand, but I'm fighting as hard as I can, and plan on continuing the fight.
When things started going downhill again, I decided to take a "maintenance dose" of pepto every day - sort of what people are doing with entocort. I quickly realized that it would not really help. Then I decided to try imodium - lo and behold I had my first almost Norman!!! I decided to try a maintenance dose of Imodium. After a couple of days I got in trouble, as it gave me stomach pain that I had not experienced before - so there went that idea. So now I was back to experimenting with diet again.
Mary Beth had posted that she thought I might be getting too much fiber, so I tried cutting out most of the fiber. It helped a little bit, but not enough. Then I discovered that I have an egg sensitivity - so there went the eggs. Same thing with shrimps and same thing with hemp milk. Meanwhile, my weight has kept dropping - I've now lost over 20 lbs. since I started this food elimination program in July. I might add that I didn't need to lose any weight to begin with. Obviously, I'm not getting enough calories to sustain my weight, so I'm almost always feeling light headed.
I have finally realized that the only way for me to get a handle on what I can eat, is to do the elimination diet. So here is my new list of foods that I will eat:
Pork
Rice
Arrowhead organic Rice and Shine hot cereal
Avocado
Unsweetened coconut flakes
My only flavorings will be fresh ginger, fresh lemon, salt and pepper, and I will cook with olive oil. The only drinks I'm allowing myself are water and a single shot of espresso without sweetener.
I started this diet yesterday, with the inclusion of bananas, but tomorrow I'm eliminating the bananas, since I think they might be a problem.
Well, if you don't hear from me again, it means I lost my mind and can no longer function :):):).
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari,
A true elimination diet starts with just 2-3 foods that are known to be tolerated. Get symptoms under control and then add one new food daily. That way you are certain of the food that causes symptoms. I understand this is not easy to do but it could yield the best results.
When I did MRT my phase 1 diet included lots of foods I never previously ate, like lamb and yellow squash. I beleive these foods were better tolerated because I never overate them. It took me 6-9 months to add back some of my old favorites. What I am suggesting is that you might try to add some things that were not previous favorites. Things I previously ate all the time (blueberries, almonds, lettuce, broccoli etc) were all problematic at first. Now that I am tolerating foods better I make a big effort to vary things up and to eat seasonally as we were intended to eat.
As Ant says "slowly, slowly catchy monkey" . . . . you'll eventually get there.
Mary Beth
A true elimination diet starts with just 2-3 foods that are known to be tolerated. Get symptoms under control and then add one new food daily. That way you are certain of the food that causes symptoms. I understand this is not easy to do but it could yield the best results.
When I did MRT my phase 1 diet included lots of foods I never previously ate, like lamb and yellow squash. I beleive these foods were better tolerated because I never overate them. It took me 6-9 months to add back some of my old favorites. What I am suggesting is that you might try to add some things that were not previous favorites. Things I previously ate all the time (blueberries, almonds, lettuce, broccoli etc) were all problematic at first. Now that I am tolerating foods better I make a big effort to vary things up and to eat seasonally as we were intended to eat.
As Ant says "slowly, slowly catchy monkey" . . . . you'll eventually get there.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Kari, you know I have a lot of sympathy and understanding for you. It is not an easy path. I'm glad to see you are "limiting" your foods. When I looked at your long list of foods you were eating, I was amazed that you were doing so well. MaryBeth, has a good point about eating things that you haven't eaten. I eat a lot of meat and rice now which is nothing I would have ate prior to MC. I love fiber, but I can not eat much and I know it, but every time I feel better I try to add in FIBER! Gabes just indicated in a recent post that she is eating exactly the same foods that she has for the last 4 months and Tex took 18 months in rebuilding. It just takes a lot of time and patience my friend.
I've gone back to square one with only an occasional banana and applesauce and a few veggies; the rest is meat and rice. I also understand about the weight................throw away the scale it will drive you nuts! I am hovering around 103-105 (5'5"); do not have another pound to lose, but the more you get on the scale the more you become anxious; its a cycle. I've decided just to accept what I am now and hope to get it back at a much later date.
Make sure if you take the Imodium that you use the older version; Imodium AD. Also I usually only take 1/2 a pill at a time. That might help with the discomfort.
More importantly we are pulling for you to get well. I pray for this group every day! Love Ginny
I've gone back to square one with only an occasional banana and applesauce and a few veggies; the rest is meat and rice. I also understand about the weight................throw away the scale it will drive you nuts! I am hovering around 103-105 (5'5"); do not have another pound to lose, but the more you get on the scale the more you become anxious; its a cycle. I've decided just to accept what I am now and hope to get it back at a much later date.
Make sure if you take the Imodium that you use the older version; Imodium AD. Also I usually only take 1/2 a pill at a time. That might help with the discomfort.
More importantly we are pulling for you to get well. I pray for this group every day! Love Ginny
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Mary Beth - thanks for your response. I wish I knew of 3 items (or even 1) that was "safe" for me. Rice and meat have never been my favorites - so they should fit the correct "category", meaning things I have not previously enjoyed. The dry coconut flakes are also brand new - and I guess I think of them less as food and more as a kind of medicine since they seem to have a soothing effect :). So, in my mind, my list of "foods" is really 3 items - pork, rice and avocado. Since I had a banana today (and decided to eliminate them), I'm starting with those 3 items tomorrow (fully realizing that I may not even be able to tolerate those). I've been thinking of doing the MRT testing, but am not sure how to go about it?
Ginny - I know you're going through a rough time right now, and appreciate your kind note. Believe it or not, the stomach ache I got on imodium was on 1/2 pill, and I had been careful to get the older version. So, I've decided to stick with pepto, which I seem to be able to tolerate.
Love,
Kari
Ginny - I know you're going through a rough time right now, and appreciate your kind note. Believe it or not, the stomach ache I got on imodium was on 1/2 pill, and I had been careful to get the older version. So, I've decided to stick with pepto, which I seem to be able to tolerate.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
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Linda in BC
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Kari, I'm sorry to hear you are having such a bad time of it. I know what you mean.. I have never been a big fan of rice or meat either before. I must say though my tastes are changing and maybe because I know they are good for my tummy, I like them a lot more than I used to , even crave them sometimes. I cannot eat shrimp, eggs or hemp anything either. I tried hemp milk... bad reaction, and then, to try to keep the weight on, I tried a hemp protein powder. It tasted very nummy compared to the rice protein powder but .. again.. bad reaction. To halt the weight loss though, until you stabilize, I would suggest you start drinking a rice protein powder drink, made with rice or almond milk ( if you can tolerate it) a couple of times a day. Add a little oil for more calories, and some chocolate syrup to make it yummy.
FWIW, on the entocort I have halted the weight loss and just in the last week have started to gain back some of the 10 lbs I lost this summer when I went GF. I have gained 2.5 lbs back.
Wishing better days ahead for you , my dear.
Linda
FWIW, on the entocort I have halted the weight loss and just in the last week have started to gain back some of the 10 lbs I lost this summer when I went GF. I have gained 2.5 lbs back.
Wishing better days ahead for you , my dear.
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Hi Linda,
Thanks for the hug :) - so glad to hear that you're doing well. I often think that our experience with MC is very similar - both had it for 10 or so years before finding out about the diet connection, similar intolerances, etc. Also, you so often say things in your posts that I have just been thinking :). I'm so tempted to try entocort, but want to give the diet more of a chance before throwing in the towel. It seems that no matter what medication I've tried over the years, I have always had some kind of bad reaction to it - the latest example being imodium. I'm grateful that I seem to tolerate Pepto.
Anyhow, you bring up a good point about a protein drink for calories, and I will definitely look into that, but first I probably need to get to the bottom of which foods (2 or 3) I can eat during the elimination diet. I'm hoping that the rice and pork will work, as pork is my "least objectionable" meat.
Love,
Kari
Thanks for the hug :) - so glad to hear that you're doing well. I often think that our experience with MC is very similar - both had it for 10 or so years before finding out about the diet connection, similar intolerances, etc. Also, you so often say things in your posts that I have just been thinking :). I'm so tempted to try entocort, but want to give the diet more of a chance before throwing in the towel. It seems that no matter what medication I've tried over the years, I have always had some kind of bad reaction to it - the latest example being imodium. I'm grateful that I seem to tolerate Pepto.
Anyhow, you bring up a good point about a protein drink for calories, and I will definitely look into that, but first I probably need to get to the bottom of which foods (2 or 3) I can eat during the elimination diet. I'm hoping that the rice and pork will work, as pork is my "least objectionable" meat.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Joe,
MRT stands for Mediator Release Testing. It is a blood test that measures your inflammatory mediator response to 150 foods/chemicals. I read about it on Scot Lewey's site when I was still very sick and decided to give it a try. I had done Enterolab with some success to determine problematic lectins but was still reacting and couldn't figure it out. The MRT filled in the gaps for me and the combination of the 2 tests proved very accurate. For example, my Enterolab test for soy was normal but I knew I reacted to soy. When I did MRT I discovered that it was the lecithin part of soy that set me off. I was also highly reactive to salicylates, tapioca, and lettuce per the test and this was very accurate.
When I did MRT I still had reactions for a few weeks - it took about 6 weeks for things to calm down. I was fine for a few months and decided to test some reactive foods to see if I regained tolerance. Some foods I tolerated but but my highly reactive foods triggered a flare. This was valuable because it was this period of time that helped me to fine tune exactly what my triggers are.
I went through the training for LEAP/MRT and now offer it in my practice. I have had very good success with most clients (not all because some don't stick with the diet). Not all clients have D - the test is used for a wide range of symptoms like migriane, fibromylagia, GERD etc. I think it would be indicated for PP who know they are reacting to foods beyond gluten, dairy, soy and can't figure it out. Again, not a cure-all (as we know based on Polly's recent exereince that stress is as much of a trigger as food) but might be able to provide some answers. You work with a trained dietitian and for those interested I can help you locate a dietitian in your area.
Mary Beth
MRT stands for Mediator Release Testing. It is a blood test that measures your inflammatory mediator response to 150 foods/chemicals. I read about it on Scot Lewey's site when I was still very sick and decided to give it a try. I had done Enterolab with some success to determine problematic lectins but was still reacting and couldn't figure it out. The MRT filled in the gaps for me and the combination of the 2 tests proved very accurate. For example, my Enterolab test for soy was normal but I knew I reacted to soy. When I did MRT I discovered that it was the lecithin part of soy that set me off. I was also highly reactive to salicylates, tapioca, and lettuce per the test and this was very accurate.
When I did MRT I still had reactions for a few weeks - it took about 6 weeks for things to calm down. I was fine for a few months and decided to test some reactive foods to see if I regained tolerance. Some foods I tolerated but but my highly reactive foods triggered a flare. This was valuable because it was this period of time that helped me to fine tune exactly what my triggers are.
I went through the training for LEAP/MRT and now offer it in my practice. I have had very good success with most clients (not all because some don't stick with the diet). Not all clients have D - the test is used for a wide range of symptoms like migriane, fibromylagia, GERD etc. I think it would be indicated for PP who know they are reacting to foods beyond gluten, dairy, soy and can't figure it out. Again, not a cure-all (as we know based on Polly's recent exereince that stress is as much of a trigger as food) but might be able to provide some answers. You work with a trained dietitian and for those interested I can help you locate a dietitian in your area.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Joe,
My knowledge about MRT testing is limited to what I've learned by reading posts here. It is basically a blood test that will identify which foods are "safe" or "unsafe" for you to eat. I read in Gloria's detailed MC journey thread that it worked for her in terms of identifying the "unsafe" foods, but not the "safe" ones. At this point in time I'm willing to try anything that can assist in ferreting out my "offenders" :).
Love,
Kari
My knowledge about MRT testing is limited to what I've learned by reading posts here. It is basically a blood test that will identify which foods are "safe" or "unsafe" for you to eat. I read in Gloria's detailed MC journey thread that it worked for her in terms of identifying the "unsafe" foods, but not the "safe" ones. At this point in time I'm willing to try anything that can assist in ferreting out my "offenders" :).
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Mary Beth - just saw your post to Joe and was wondering if you could recommend a dietitian in Littleton or Lakewood, CO. Thanks in advance for your help.
Love,
Kari
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Jan Patenaude is from CO and is the Nutrition Director at Signet, so I know she knows her stuff. Here is her info http://nutritionists.healthprofs.com/ca ... ado_502843
Mary Beth
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer