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Terre,
Looking at your list of foods there are a lot there that could pose problems. To start out I would probably remove all dairy and all fruit. I stick to only 2 oils, extra virgin olive oil and coconut oil. I would cut out the whole nuts. Nut butters might be ok. If you eat only a few foods (I ate maybe 6 at first and I don't eat a whole lot more now) you lessen the chance that you are eating something you are reacting to and you make the process of figuring out what is causing the problem much simpler. I agree with Suze. Simplify!
When I joined this forum I had given up on the idea that anyone in the medical profession could help me, that's both traditional and alternative medicine. I was tired of throwing money at people for advice that was not helpful and some that was harmful and had vowed not to spend any more. That said, after joining this forum I ordered that Enterolab tests, put it on my charge card and paid it off over time. It was the best money I had spent on trying to figure this out. Not only did I learn all the foods I was reacting to but it helps psychologically , preventing me from convincing myself that it would be ok to eat just a little of this or that.
Although I am sure your nutritionist means well, she has given you rather generic "alternative" dietary advice. It is more boiler plate than designed around your specific needs. So read Tex's book and simplify, simplify, simplify, and be patient for this is not a quick fix.
Jean
Plan of Action
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Thanks for the advice Jean...everyone on this site has been so helpful and hopefully as time goes by, I can contribute to help others.
May I ask which panel you decided on when you had you Enterolab tests done? I am going to do the testing...just a matter of deciding which would be best.
When I began this morning asking for help with a "plan of action", I was feeling pretty low - after visiting with all you kind folks, I am more optimistic. I can't seem to say thanks enough!
Terre
May I ask which panel you decided on when you had you Enterolab tests done? I am going to do the testing...just a matter of deciding which would be best.
When I began this morning asking for help with a "plan of action", I was feeling pretty low - after visiting with all you kind folks, I am more optimistic. I can't seem to say thanks enough!
Terre
Terre,
I am glad you are feeling more optimistic. When I joined this forum I could barely leave the bathroom. The first thing I did, even before I got my Enterolab kit, was eliminate gluten, dairy, soy and eggs. I already knew that fiber was not my friend, so I stuck to ground meats and broth. That really slowed things down while I eagerly awaited the results of my Enterolab test. First I ordered panel B and then, about 2 weeks after I got those results which were all positive, I ordered panel C. I have never used prescription drugs. By the time things got really bad for me, I had given up on doctors. I have never had an official diagnosis and since eliminating foods was so helpful for me, I saw no reason to put myself through a colonoscopy to get an official diagnosis that would only result in the same dietary treatment.
Jean
I am glad you are feeling more optimistic. When I joined this forum I could barely leave the bathroom. The first thing I did, even before I got my Enterolab kit, was eliminate gluten, dairy, soy and eggs. I already knew that fiber was not my friend, so I stuck to ground meats and broth. That really slowed things down while I eagerly awaited the results of my Enterolab test. First I ordered panel B and then, about 2 weeks after I got those results which were all positive, I ordered panel C. I have never used prescription drugs. By the time things got really bad for me, I had given up on doctors. I have never had an official diagnosis and since eliminating foods was so helpful for me, I saw no reason to put myself through a colonoscopy to get an official diagnosis that would only result in the same dietary treatment.
Jean
Jean, I can certainly understand where you stand on doing further tests. Bottom line is that we know our bodies and sometimes we just need to listen. When I was young, I just took whatever they gave me....in probably the last 10 years, I research and ask questions before I decide to take what they are offering.
Thanks for sharing which Enterolab tests you did....I'm going to decide and get some ordered today (I had to talk to my husband to make sure he was okay with me spending the $$$$$).
Wishing you a great day!
Terre
Thanks for sharing which Enterolab tests you did....I'm going to decide and get some ordered today (I had to talk to my husband to make sure he was okay with me spending the $$$$$).
Wishing you a great day!
Terre
I did Enterolab panels A & C. It helped enormously. I was eating all the wrong foods, and didn't even realize it! I reacted to all 11 foods tested.
I had to stop taking all supplements. I was down to only a multivitamin & digestive enzymes, but when I stopped things improved. Even though the brand I used was allergy free, there must have been something in them I was reacting to. As far a probiotics, I have not been able to take them for a year now.
Simplicity with a few foods that are tolerated seems to be the best way to go.
:)
I had to stop taking all supplements. I was down to only a multivitamin & digestive enzymes, but when I stopped things improved. Even though the brand I used was allergy free, there must have been something in them I was reacting to. As far a probiotics, I have not been able to take them for a year now.
Simplicity with a few foods that are tolerated seems to be the best way to go.
:)
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Linda, thanks for posting.
It has been very helpful to see which panels others have ordered. My new mantra is "simplify, simplify, simplify" and it makes so much sense. I am so grateful to those that are willing to share their experiences to help us newbies....I don't know which poster said "I wish we could throw you a big party", but I agree!!!!
Have a great day,
Terre
It has been very helpful to see which panels others have ordered. My new mantra is "simplify, simplify, simplify" and it makes so much sense. I am so grateful to those that are willing to share their experiences to help us newbies....I don't know which poster said "I wish we could throw you a big party", but I agree!!!!
Have a great day,
Terre
Terre,
To answer your earlier question, I haven't done Enterolab. My choice not to do that has to do with avoiding the need to obsess about food more than I already do. If a food makes me not feel good (eggplant) or I have a strong aversion to it (coconut, raisins), I figure there's a good reason why, and I won't eat it.
I did take Entocort, along with diet changes, and it helped tremendously at the beginning, in the sense that it calmed things down enough that I was able to feel like I could leave the house and gradually get my life back. I had no side effects from it, and took it for over a year before weaning slowly off it. I no longer eat gluten or dairy (though I have been eating a little cheese lately with no problem). I avoid soy to the greatest degree possible.
That said, I am also someone who is not on a quest for "perfect" poo. I don't get upset with the fact that I can have a "normal" BM one time and a very loose one the next. One less thing to get stressed about.
To answer your earlier question, I haven't done Enterolab. My choice not to do that has to do with avoiding the need to obsess about food more than I already do. If a food makes me not feel good (eggplant) or I have a strong aversion to it (coconut, raisins), I figure there's a good reason why, and I won't eat it.
I did take Entocort, along with diet changes, and it helped tremendously at the beginning, in the sense that it calmed things down enough that I was able to feel like I could leave the house and gradually get my life back. I had no side effects from it, and took it for over a year before weaning slowly off it. I no longer eat gluten or dairy (though I have been eating a little cheese lately with no problem). I avoid soy to the greatest degree possible.
That said, I am also someone who is not on a quest for "perfect" poo. I don't get upset with the fact that I can have a "normal" BM one time and a very loose one the next. One less thing to get stressed about.
Suze
Suze, would you consider yourself to be in remission?
I know this is a disease and we just have to manage it the best we can. I have Fibromyalgia and it took me years to get to the point where I have figured out what works best for me (yes, I still have flares), but in the process, I found that what works for one, may not work for another.
So, I will begin the same journey with MC and hope I get some balance figured out sooner than later!
Terre
I know this is a disease and we just have to manage it the best we can. I have Fibromyalgia and it took me years to get to the point where I have figured out what works best for me (yes, I still have flares), but in the process, I found that what works for one, may not work for another.
So, I will begin the same journey with MC and hope I get some balance figured out sooner than later!
Terre
Terre,
As I said in my first post, I consider myself to be in recovery, not necessarily remission. I expect that LC will rear its head from time to time, and that I will never be in 100% control of it. For now, I am feeling good as long as I avoid problem foods, avoid taking excess meds/supplements, avoid stress to the degree I can, and make sure to get enough rest. I live my life normally, with only a few accommodations for the LC. But it took me well over a year to get to that point.
What you say about fibromyalgia is very true of MC also. Be patient, and you'll figure it out.
As I said in my first post, I consider myself to be in recovery, not necessarily remission. I expect that LC will rear its head from time to time, and that I will never be in 100% control of it. For now, I am feeling good as long as I avoid problem foods, avoid taking excess meds/supplements, avoid stress to the degree I can, and make sure to get enough rest. I live my life normally, with only a few accommodations for the LC. But it took me well over a year to get to that point.
What you say about fibromyalgia is very true of MC also. Be patient, and you'll figure it out.
Suze
Hi Terre.
I took Entocort for six months. It worked very quickly for me. I tapered down to 2 pills a day after one month. Your body will tell you when by getting slightly constipated. I was on 2 a day for another month. Then I tapered down to one a day for about 2 months. once you are down to one a day, you will see what else you might be reacting to. It's a good time to fine tune your diet. Then I went to every other day, then every three days...etc. Six months total. If you don't use it lonf enough, you are likely to relapse. The only way to stay off the meds is through diet. I have been drug free for almost a year now. I usually only go once a day, but it's not always solid. I can deal with those results.I now take a few chances here and there with restaurants and some GF products, but didn't do any of that the first 6 months.
If I were you, I would get rid of the fresh fruit and dairy right now. you might see a lot of relief by just doing those two things.
Dessert? That's the least of your problems right now, but I used apple sauce or baked apples. Sugar can really be an issue for many of us- especially when we still have inflammation. I can eat a couple of squares of dark chocolate with little ill effects. i can also eat about 12 jelly Bellies at a time :)
Someone else will have to chime in about the Enterolab tests. I did send a sample in, but was unable to get results because it turns out that I am IgA deficient ( and that's what is measured in these tests).
Good luck!
Leah
I took Entocort for six months. It worked very quickly for me. I tapered down to 2 pills a day after one month. Your body will tell you when by getting slightly constipated. I was on 2 a day for another month. Then I tapered down to one a day for about 2 months. once you are down to one a day, you will see what else you might be reacting to. It's a good time to fine tune your diet. Then I went to every other day, then every three days...etc. Six months total. If you don't use it lonf enough, you are likely to relapse. The only way to stay off the meds is through diet. I have been drug free for almost a year now. I usually only go once a day, but it's not always solid. I can deal with those results.I now take a few chances here and there with restaurants and some GF products, but didn't do any of that the first 6 months.
If I were you, I would get rid of the fresh fruit and dairy right now. you might see a lot of relief by just doing those two things.
Dessert? That's the least of your problems right now, but I used apple sauce or baked apples. Sugar can really be an issue for many of us- especially when we still have inflammation. I can eat a couple of squares of dark chocolate with little ill effects. i can also eat about 12 jelly Bellies at a time :)
Someone else will have to chime in about the Enterolab tests. I did send a sample in, but was unable to get results because it turns out that I am IgA deficient ( and that's what is measured in these tests).
Good luck!
Leah
Terre,
Leah and Tex have already given you the best information. I just want to weigh in on Entocort. I took it for about 9 months and took about a month to slowly wean off. I had immediate relief and began to feel so much better. I eliminated all the foods that Leah mentioned. I have been gluten free for two years now. Since the healing I have been able to add back some of the foods, but everything in moderation.
I looked over your list of foods you are eating and if I were you I would eliminate all the dairy products, eggs, and nuts until you heal. As far as desserts I make my own baked goods and there are plenty of good recipes out there.
It does get easier or you just get use to it. It is much better to avoid all those foods and feel better. Later on you may be able to add some back again.
Good luck,
Nancy
Leah and Tex have already given you the best information. I just want to weigh in on Entocort. I took it for about 9 months and took about a month to slowly wean off. I had immediate relief and began to feel so much better. I eliminated all the foods that Leah mentioned. I have been gluten free for two years now. Since the healing I have been able to add back some of the foods, but everything in moderation.
I looked over your list of foods you are eating and if I were you I would eliminate all the dairy products, eggs, and nuts until you heal. As far as desserts I make my own baked goods and there are plenty of good recipes out there.
It does get easier or you just get use to it. It is much better to avoid all those foods and feel better. Later on you may be able to add some back again.
Good luck,
Nancy
So true....Suze wrote:I just needed to step back, figure out what NOT to eat, what pills to eliminate. Then to just be patient and understand this was not something I was going to be fixing anytime soon. My recovery (I'm not yet calling it remission) has been a work of progress over two years. I had to abandon any sense of desperation to find the one or two things that would make everything better.
I believe that the simple act of understanding that there were things I would just have to take as they came, reduced the stress that was a likely trigger for me.
Gloria
You never know what you can do until you have to do it.