Hi everyone,
I will try to be brief and to the point, but I need some direction as to what to do next. Here is where I am:
I have been taking 9mg Entocort and 2 Lialda twice a day basically since November and was still having D. Did lots of food elimination and couldn't ever get stable even after going down to just buffalo and squash. I started taking Histame in somewhat massive quantities as well as mega dose of probiotics (100 billion) and saccharomyces boullardi (sp?) and Glutamine and Lysine. I am also taking zyrtec twice a day. Things have finally started to get better, no more D! But now I don't know what to do!
I am still eating only Bananas, Buffalo, zucchini, butternut squash, and grapeseed oil. I feel great so I am scared to try new foods. I don't know how long I have to be off of the foods Enterolab said were bad (Chicken?) and I have no idea what to add in first. I really think my main issue has been a histamine problem, so the Histame is helping with that.
Also, I don't know if I should try to add in new foods first, or try to wean off of the meds first. Unfortunately I know they have been helping somewhat, bc I forgot my Lialda one night and had major D the next morning.
Anyway, I am stuck and need some advice.
Thanks in advance,
Susie
I need a little direction.....
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Hi Susie,
On a practical level, if you presently can't wean off the meds without relapsing, and your long-term goal includes weaning off the meds, then adding in new foods will almost surely simply delay your progress and postpone the date at which you might be able to wean off the meds.
The proteins to which you produce antibodies, according to EnteroLab tests, are almost surely permanent sensitivities, and you will probably never be able to tolerate those foods without having symptoms. Exceptions are yeast and possibly eggs -- the others are probably forever. Foods that irritate the gut (other than proteins) can usually be added back into the diet at some point, after sufficient healing takes place. It took me over a year and a half of healing, after I reached remission, before I was able to add any foods back into my diet. Since you're younger than I was at that point, you may heal faster, but healing always takes longer than we think it should.
Your experience skipping the Lialda suggests that you have additional food sensitivities (or cross-contamination problems) that need to be corrected before you will be able to wean off the meds. With a diet as restricted as yours, the problem is most likely cross-contamination. You might try cutting out the bananas for a trial, though, to see if that makes a difference, because quite a few of us react (to some extent) to bananas; for some, it's a dose-dependent reaction.
If you are cooking conventional meals for your family, and especially if you have any wheat flour in your kitchen, then I can virtually guarantee that you are having cross-contamination issues. You can't open a bag of flour without particles of flour drifting all over the kitchen and settling on everything. It only takes a trace to contaminate your dishes, utensils, food, etc. The meds you are taking would probably be sufficient to mask trace amounts of gluten in your diet, but a cross-contamination problem may be why you had an immediate reaction when you skipped the Lialda. Most people in your position can discontinue their only med and coast for a few days to a few weeks or months before relapsing. A relapse in less than a day, while still taking Entocort, suggests that you are barely maintaining a position only slightly below threshold for a reaction. Speaking from experience (been there, done that) I would look for cross-contamination in your food as a first step.
The possibility also exists that you might just need more time to reach a condition of stable remission. Some of us have more damage to begin with, which takes longer to heal, especially if we have celiac genes (which usually implies significant small intestinal involvement, also). This disease teaches us to be very good detectives.
You're most welcome,
Tex
On a practical level, if you presently can't wean off the meds without relapsing, and your long-term goal includes weaning off the meds, then adding in new foods will almost surely simply delay your progress and postpone the date at which you might be able to wean off the meds.
The proteins to which you produce antibodies, according to EnteroLab tests, are almost surely permanent sensitivities, and you will probably never be able to tolerate those foods without having symptoms. Exceptions are yeast and possibly eggs -- the others are probably forever. Foods that irritate the gut (other than proteins) can usually be added back into the diet at some point, after sufficient healing takes place. It took me over a year and a half of healing, after I reached remission, before I was able to add any foods back into my diet. Since you're younger than I was at that point, you may heal faster, but healing always takes longer than we think it should.
Your experience skipping the Lialda suggests that you have additional food sensitivities (or cross-contamination problems) that need to be corrected before you will be able to wean off the meds. With a diet as restricted as yours, the problem is most likely cross-contamination. You might try cutting out the bananas for a trial, though, to see if that makes a difference, because quite a few of us react (to some extent) to bananas; for some, it's a dose-dependent reaction.
If you are cooking conventional meals for your family, and especially if you have any wheat flour in your kitchen, then I can virtually guarantee that you are having cross-contamination issues. You can't open a bag of flour without particles of flour drifting all over the kitchen and settling on everything. It only takes a trace to contaminate your dishes, utensils, food, etc. The meds you are taking would probably be sufficient to mask trace amounts of gluten in your diet, but a cross-contamination problem may be why you had an immediate reaction when you skipped the Lialda. Most people in your position can discontinue their only med and coast for a few days to a few weeks or months before relapsing. A relapse in less than a day, while still taking Entocort, suggests that you are barely maintaining a position only slightly below threshold for a reaction. Speaking from experience (been there, done that) I would look for cross-contamination in your food as a first step.
The possibility also exists that you might just need more time to reach a condition of stable remission. Some of us have more damage to begin with, which takes longer to heal, especially if we have celiac genes (which usually implies significant small intestinal involvement, also). This disease teaches us to be very good detectives.
You're most welcome,
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.
Susie,
If you address the issues Tex mentions and still are taking meds but are barely managed, you may want to consider having MRT testing. MRT looks at food additives, dyes, and chemicals commonly found in food, in addition to the foods themselves. When I received my MRT results it has allowed me to test and add foods I would have been reluctant to eat before-- like strawberries, avocados, apricots, sunflower seeds, dates, coconut, etc--- and showed me to eliminate tea, peaches and pears, all of which were a surprise to me. But my main interest in getting it was for the info on dyes and chemicals. It really has helped me fine tune my strategy. It might be worth consideration.
Hang in there. I'm glad you are feeling well, even if you are a little 'stuck'.
Carol
If you address the issues Tex mentions and still are taking meds but are barely managed, you may want to consider having MRT testing. MRT looks at food additives, dyes, and chemicals commonly found in food, in addition to the foods themselves. When I received my MRT results it has allowed me to test and add foods I would have been reluctant to eat before-- like strawberries, avocados, apricots, sunflower seeds, dates, coconut, etc--- and showed me to eliminate tea, peaches and pears, all of which were a surprise to me. But my main interest in getting it was for the info on dyes and chemicals. It really has helped me fine tune my strategy. It might be worth consideration.
Hang in there. I'm glad you are feeling well, even if you are a little 'stuck'.
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
Susie, Tex know of what he speaks. And Carol also had a great idea with MRT. The only thing I can say is that you should try to SLOWLY wean off the most dangerous meds before you think of adding new foods. I don't know if your doctor will let you stay on 9 mg of Entocort forever, but it's not a good idea. For me, I just waited until I got slightly constipated and then Stepped down the dosage slowly. Etc. etc.
Good luck
Leah
Good luck
Leah
Thanks for the tips everyone.
Carol, do you have a link to the MRT testing? I think I found one-ALCAT? but not sure if it is the same one others have used. They were about a thousand dollars? The crazy thing about the testing, I did the Enterolab, and it said I was fine with beef and rice, but I definitely can't handle those!
Tex, We got gluten out of the home in November. I am not the only one sensitive, so I know that is not the problem. I bet you are right about the bananas, but it makes me start to cry when I think about eliminating them. I think I am not quite ready yet. It is the only thing I enjoy eating. I am making my second batch of quail soup right now, and I have to gag it down :( I am very curious about the difference in egg protein and chicken protein. Do you know what makes it that some can handle eggs down the road, but not the other proteins tested by enterolabs? I was under the impression that most of the intolerances besides gluten, dairy, and soy could go away with time and healing. I do think that part of my problem with traditional meats it what they are fed. Not exactly sure how that works, but if food proteins are passed through milk, I am sure they are somewhat passed through animal cells into meat. Thinking I can't handle meat that is fed corn, oats, barley, and wheat, but I sure don't love the taste of the game meats :(. Also, do you know if there is a significant enough difference in chicken eggs and say duck or goose eggs? Don't want to try right now, but thinking about it down the road.
Leah, thank you! That gives me a good idea about tapering!
I really appreciate all of the help!
Thanks again, Susie
Carol, do you have a link to the MRT testing? I think I found one-ALCAT? but not sure if it is the same one others have used. They were about a thousand dollars? The crazy thing about the testing, I did the Enterolab, and it said I was fine with beef and rice, but I definitely can't handle those!
Tex, We got gluten out of the home in November. I am not the only one sensitive, so I know that is not the problem. I bet you are right about the bananas, but it makes me start to cry when I think about eliminating them. I think I am not quite ready yet. It is the only thing I enjoy eating. I am making my second batch of quail soup right now, and I have to gag it down :( I am very curious about the difference in egg protein and chicken protein. Do you know what makes it that some can handle eggs down the road, but not the other proteins tested by enterolabs? I was under the impression that most of the intolerances besides gluten, dairy, and soy could go away with time and healing. I do think that part of my problem with traditional meats it what they are fed. Not exactly sure how that works, but if food proteins are passed through milk, I am sure they are somewhat passed through animal cells into meat. Thinking I can't handle meat that is fed corn, oats, barley, and wheat, but I sure don't love the taste of the game meats :(. Also, do you know if there is a significant enough difference in chicken eggs and say duck or goose eggs? Don't want to try right now, but thinking about it down the road.
Leah, thank you! That gives me a good idea about tapering!
I really appreciate all of the help!
Thanks again, Susie
-
MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Hi from Vancouver, Susie, We're practically neighbors. 
Please don't take this wrong, but are you sure your home is gluten-free? I thought ours had been gluten-free for more than a year, then my 17yo baked something in mini loaf pans several days ago. I expected a minor reaction from the grains, but I finally figured out that my excessive reaction was from the pans in which wheat loaves had been baked a couple of years ago or more. We threw them away. We have thrown away all wooden utensils and given away our toaster. We don't have any cast iron that is not enamel-covered, and I only use my rolling pen with something between it and the food. Just some thoughts... I was totally surprised that there was a source of gluten in my home.
Oh, and we've talked about gluten (and other intolerable foods) in supplements before.
The other thing I was wondering is... how is your stress level? Having so little to eat is stressful in and of itself, of course. We all have stress, some of it really major, but how we react to it is key to whether we are stuck on the toilet or not. Sometimes I think if I could just get a handle on my stress... For me, relaxation techniques and writing in a journal have been very helpful.
You've probably thought about and/or are doing all this in addition to what you've mentioned. Best wishes for weaning off your meds!
Please don't take this wrong, but are you sure your home is gluten-free? I thought ours had been gluten-free for more than a year, then my 17yo baked something in mini loaf pans several days ago. I expected a minor reaction from the grains, but I finally figured out that my excessive reaction was from the pans in which wheat loaves had been baked a couple of years ago or more. We threw them away. We have thrown away all wooden utensils and given away our toaster. We don't have any cast iron that is not enamel-covered, and I only use my rolling pen with something between it and the food. Just some thoughts... I was totally surprised that there was a source of gluten in my home.Oh, and we've talked about gluten (and other intolerable foods) in supplements before.
The other thing I was wondering is... how is your stress level? Having so little to eat is stressful in and of itself, of course. We all have stress, some of it really major, but how we react to it is key to whether we are stuck on the toilet or not. Sometimes I think if I could just get a handle on my stress... For me, relaxation techniques and writing in a journal have been very helpful.
You've probably thought about and/or are doing all this in addition to what you've mentioned. Best wishes for weaning off your meds!
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Susie- there are a couple of ways to get the MRT testing. Most typically it is done through a dietician that is trained in the LEAP program. Signet Diagnostics runs all the tests so there is consistency there. Then the dietician will help plan a rotation diet.
Because my diet was already greatly restricted and I am 3 hours from the nearest dietician trained in LEAP, I opted to order my MRT test as a kit from TrueHealth Labs.com. They mailed me the kit and a local lab drew the blood for me. My cost was $399 plus $15 to draw blood. It can be ordered directly from Signet Labs too but I don't know the cost. They encourage you to go through a dietician because they can order it at a discounted price for you.
Mary Beth (mbeezie) on this site is our 'go-to' person for advice. She is a registered dietician and as someone who also has MC her advice is very practical for our situations.
Hope this helps.
Carol
Because my diet was already greatly restricted and I am 3 hours from the nearest dietician trained in LEAP, I opted to order my MRT test as a kit from TrueHealth Labs.com. They mailed me the kit and a local lab drew the blood for me. My cost was $399 plus $15 to draw blood. It can be ordered directly from Signet Labs too but I don't know the cost. They encourage you to go through a dietician because they can order it at a discounted price for you.
Mary Beth (mbeezie) on this site is our 'go-to' person for advice. She is a registered dietician and as someone who also has MC her advice is very practical for our situations.
Hope this helps.
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
IMO, what really happens in those cases is that some individuals are able to develop a tolerance for certain allergens or sensitivities, if they continue to be exposed to them (IOW, they eventually become desensitized sufficiently to avoid triggering a reaction). Unfortunately that doesn't mean that you are home free if you are in that situation, because if you order a stool test, or have biopsy samples taken from your intestines, you will find that you are still producing antibodies to those foods, even though you are asymptomatic. For example, I am asymptomatic to casein, but I produce antibodies against it, if I ingest it.Susie wrote:Do you know what makes it that some can handle eggs down the road, but not the other proteins tested by enterolabs? I was under the impression that most of the intolerances besides gluten, dairy, and soy could go away with time and healing.
Theoretically, it is impossible for meat to transmit any peptides from feed, because new tissue (meat) is formed from individual amino acids (not from peptides). Some people however, are convinced that those peptides can be transmitted in meat. DogtorJ (Dr. John Symes), for example, is a proponent of that concept.Susie wrote:I do think that part of my problem with traditional meats it what they are fed. Not exactly sure how that works, but if food proteins are passed through milk, I am sure they are somewhat passed through animal cells into meat.
http://dogtorj.com/what-is-food-intoler ... enization/
There are some molecular differences, but only a relatively small percentage of individuals are able to tolerate eggs from other species if they are sensitive to the albumen in chicken eggs.Susie wrote:Also, do you know if there is a significant enough difference in chicken eggs and say duck or goose eggs?
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.
Wow, I am not sure how I missed all of these responses!
Marliss, I have wondered about the pots and pans...I don't eat any bread, so I know the problem isn't there. I could stand to throw out our wooden spoons and baking pans, but holy smokes I hope I don't have to get rid of my Le Creuset! And my husband has fancy copper pots from France! I don't use the cast iron pan that I know my husband used to use for quesadillas....Isn't there any way to clean them?
And as to the stress...I have 4 kids, 10, 7, 4, and 2, the first three being wild boys. I wish I could escape the stress!
Carol, that is really helpful info. I will look into the testing and see if I have a dietician nearby.
Good info Tex, I am learning so much every day. I didn't figure I should try any eggs. Kind of like the goats milk thing! Not worth it right now.
Thanks everyone!
Susie
Marliss, I have wondered about the pots and pans...I don't eat any bread, so I know the problem isn't there. I could stand to throw out our wooden spoons and baking pans, but holy smokes I hope I don't have to get rid of my Le Creuset! And my husband has fancy copper pots from France! I don't use the cast iron pan that I know my husband used to use for quesadillas....Isn't there any way to clean them?
And as to the stress...I have 4 kids, 10, 7, 4, and 2, the first three being wild boys. I wish I could escape the stress!
Carol, that is really helpful info. I will look into the testing and see if I have a dietician nearby.
Good info Tex, I am learning so much every day. I didn't figure I should try any eggs. Kind of like the goats milk thing! Not worth it right now.
Thanks everyone!
Susie