Thank you so much to all those who post on this site - it has been absolutely invaluable since I found you 2 days ago. I am 41 - dx with MC in April of 2012 after an appendectomy - and nothing has been the same since.
Currently I am on Entocort with little success - better than nothing, but not what I was hoping for...still 2-3 muddy D's a day. I was on 9mg/day and started 6mg today to start to wean (was originally md's plan to go a month with 9, month with 6 and month with 3). Since I discovered you I have been GF / DF (2 LONG, educational days). Since I currently have daily D anyway, not sure I'll be able to discover what food are "safe" and which are not.
A plethora of questions:
Testing - my insurance won't cover Enterolab so I am weighing my options. I believe it will cover for me to go to an allergist to be tested (not sure if this is the MRT testing you all speak of). It sounds like most of you do trial and error with food so maybe that is the route to go anyways. I have already tested negative for gluten and dairy - but I need to try something since the meds are not helping.
Should I be on a probiotic? If so, is Culturelle "safe" for most?
Is is possible to find another member? I noticed from postings that Jane "jgivens" and I live in the same city - Kalamazoo! Would love to chat with her to see how she is and which physicians can help and those to run from.
Any bit of information you want to impart will be received with open arms! Truly, so happy to have found this group (who ever would have thought that I would be interested in reading about others bathroom habits!!!) Without this site I would never have tried going GF again (tried for 2 weeks about 6 months ago). Sounds like managing with diet is the way to go, but feel like it will be awhile since my gut appears to be so unhappy with me!
Another New Girl!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi T Girl,
Welcome to our internet family. You are correct that it is virtually impossible to determine which foods cause us to react as long as we are still reacting. The only way to do that systematically is to follow an elimination diet until remission is achieved, and then foods can be tested one at a time, to monitor the effects for a few days before trying another one.
A few people are lucky, and Entocort is effective enough for them that they can continue to eat whatever they please (as long as they are taking the drug). Unfortunately, many/most of us also have to modify our diet in order to achieve remission.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14421
Most of us have little success with probiotics until after we are in remission. For most of us, probiotics either have no effect, or they make our symptoms worse, while we are still recovering.
Here is a list of the doctors we have found who actually understand this disease, and who are able to treat it successfully:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14420
Please give the diet time to work, because healing of the damage caused by gluten in our intestines takes much longer than most people (including doctors) realize, and some of us have to avoid other foods, as well, especially while we are healing. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. You are correct that it is virtually impossible to determine which foods cause us to react as long as we are still reacting. The only way to do that systematically is to follow an elimination diet until remission is achieved, and then foods can be tested one at a time, to monitor the effects for a few days before trying another one.
A few people are lucky, and Entocort is effective enough for them that they can continue to eat whatever they please (as long as they are taking the drug). Unfortunately, many/most of us also have to modify our diet in order to achieve remission.
Unfortunately, most allergists don't have the foggiest idea how to treat someone who has MC, and so the testing they do is virtually worthless. They test for IgE-based reactions (either in the blood or on the skin), and the primary reactions associated with the inflammation that causes MC are associated with IgA antibodies in the gut, and in stool. That's why stool tests for IgA antibodies are the only practical way to accurately and reliably detect food sensitivities. I say "practical" because food sensitivities can also be accurately and reliably detected by using biopsy samples from the mucosal surface of the colon, but that's not a very practical method, due to the cost and inconvenience to the patient. The bottom line is, except for a handful of specialists who have special training, allergists know how to test for classic food allergies, but they are not trained to accurately detect or treat digestive food sensitivities. Those few allergists who are qualified can be found on this list:T Girl wrote:Testing - my insurance won't cover Enterolab so I am weighing my options. I believe it will cover for me to go to an allergist to be tested (not sure if this is the MRT testing you all speak of). It sounds like most of you do trial and error with food so maybe that is the route to go anyways. I have already tested negative for gluten and dairy - but I need to try something since the meds are not helping.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14421
Most of us have little success with probiotics until after we are in remission. For most of us, probiotics either have no effect, or they make our symptoms worse, while we are still recovering.
Sure. A lot of members share information and experiences either in private messages (PMs), emails, phone, or in person. That's strictly up to the individual members, of course. After you post a few more messages, you will be able to see the contact information for other members at the bottom of their posts. That limitation is imposed in order to prevent spammers from signing up just so they can "harvest" contact information from members here.T Girl wrote:Is is possible to find another member? I noticed from postings that Jane "jgivens" and I live in the same city - Kalamazoo! Would love to chat with her to see how she is and which physicians can help and those to run from.
Here is a list of the doctors we have found who actually understand this disease, and who are able to treat it successfully:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14420
Please give the diet time to work, because healing of the damage caused by gluten in our intestines takes much longer than most people (including doctors) realize, and some of us have to avoid other foods, as well, especially while we are healing. Again, welcome aboard, and please feel free to ask anything.
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.
Welcome t girl
I think Tex covered your questions well, except for the one about getting in contact with someone who is from your area. I see that this is your first post, I think you need to make a certain # of posts before you are allowed to use the private message option and do searches of other member profiles and posts. Not sure what the # required is, but I think it's only 5 or so.
This was set up to prevent spammers I believe.
Connie
This was set up to prevent spammers I believe.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Thank you both! Have you often seen those that don't respond to Entocort? Do you think I should try the Pepto road next? Or try another med like Asacol, etc. I almost fee like I need to try something to aid in the healing while the diet (hopefully) does it's job.
I assume from your response that you really believe in the Enterolab results? Would you recommend the A&C panel? How specific will the results be (generic like gluten or specific as in potatoes, carrots, etc). I believe the MRT test would fall into the blood test you spoke of that won't really give the results I need?
At this point I feel better trusting all of you over my GI since you have lived through this - and from reading posts MD's don't seem to have a handle on the treatment.
Again, so appreciate the assistance - you are helping so many people!
I assume from your response that you really believe in the Enterolab results? Would you recommend the A&C panel? How specific will the results be (generic like gluten or specific as in potatoes, carrots, etc). I believe the MRT test would fall into the blood test you spoke of that won't really give the results I need?
At this point I feel better trusting all of you over my GI since you have lived through this - and from reading posts MD's don't seem to have a handle on the treatment.
Again, so appreciate the assistance - you are helping so many people!
I had the full Enterolab testing done at the end of '09 and their tests have expanded since then. My daughter's and grandkids have now been tested, 5 of 6 of us are gluten intolerant via Enterolab, all share my 501 gene, we all have a different second GS gene. and just KNOWING that helps in the resolve to eliminate gluten.
I never used drugs for my MC, everything I've done has been OTC meds. I tried the Pepto route too, it didn't set well with me, as is the case with some of us. I relied primarily on L-Glutamine, ProBoulardi and probiotics, as well as upping my dose of B6/B12 and take 5K iu of D daily.
If your insurance will cover the expanded Elisa testing, then you've got nothing to lose to have those tests done, IMO. The Elisa tests have been improved since I had them done 10+ years ago and my husband's fairly recent test showed a gluten allergy, so I would start there if I were you.
Most of us here are pretty disappointed in the lack of knowledge of our GI Doc's. All we can do is educate them :-)
Connie
I never used drugs for my MC, everything I've done has been OTC meds. I tried the Pepto route too, it didn't set well with me, as is the case with some of us. I relied primarily on L-Glutamine, ProBoulardi and probiotics, as well as upping my dose of B6/B12 and take 5K iu of D daily.
If your insurance will cover the expanded Elisa testing, then you've got nothing to lose to have those tests done, IMO. The Elisa tests have been improved since I had them done 10+ years ago and my husband's fairly recent test showed a gluten allergy, so I would start there if I were you.
Most of us here are pretty disappointed in the lack of knowledge of our GI Doc's. All we can do is educate them :-)
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Connie, so interesting - thanks for the info! After reading through this 'support group" I have decided I may need to take some masters science classes (body chemistry, genes, ingredients in food, etc)...so much to educate myself on! I appreciate your input - that all makes sense!
I am still a bit in denial - how is it possible that my body is doing this to me - and is it possible that all this D is caused by what I am putting into it (considering at 16 I could eat donuts and pizza and never gain a pound)!? I do realize I need to get over it but it's overwhelming!
Thanks - Tracey
I am still a bit in denial - how is it possible that my body is doing this to me - and is it possible that all this D is caused by what I am putting into it (considering at 16 I could eat donuts and pizza and never gain a pound)!? I do realize I need to get over it but it's overwhelming!
Thanks - Tracey
Hi Tracy,
FWIW, Entocort will not speed up healing — in fact, corticosteroids are known to retard healing. What it will do is mask your symptoms while your diet changes heal your gut. IOW, the Entocort will allow you to enjoy a better quality of life while you're waiting for your intestinal damage to heal.
The reason why these diet sensitivities seem to occur almost overnight is because they literally do. Research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are triggered at the same time. And gluten sensitivity tends to drag other proteins that have peptides in their amino acid chains similar to the alpha gliadin peptide, down with it — especially casein and soya, the primary proteins in all dairy products and soybeans, respectively.
Tex
FWIW, Entocort will not speed up healing — in fact, corticosteroids are known to retard healing. What it will do is mask your symptoms while your diet changes heal your gut. IOW, the Entocort will allow you to enjoy a better quality of life while you're waiting for your intestinal damage to heal.
The reason why these diet sensitivities seem to occur almost overnight is because they literally do. Research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are triggered at the same time. And gluten sensitivity tends to drag other proteins that have peptides in their amino acid chains similar to the alpha gliadin peptide, down with it — especially casein and soya, the primary proteins in all dairy products and soybeans, respectively.
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.
Tracey, I totally identify with the feeling of disbelief that your body can turn on you so suddenly--that's exactly what I was thinking when I was diagnosed.
I did Entocort for over a year. I believe it helped me a lot while I got my diet under control. I have been GF/DF/mostly SF since about May of 2011, after thinking that once I felt a little better, I could try those things again--WRONG.
I also initially tried to wean off Entocort too quickly--big mistake.
This condition requires a lot of patience, and willingness to modify and accommodate. Not easy for someone with my personality, and high need for control, but I've found out that it's easier to do those things than to fight and deny.
I'm glad you are finding the info here to be as helpful as I did. I'm still learning new things.
I did Entocort for over a year. I believe it helped me a lot while I got my diet under control. I have been GF/DF/mostly SF since about May of 2011, after thinking that once I felt a little better, I could try those things again--WRONG.
I also initially tried to wean off Entocort too quickly--big mistake.
This condition requires a lot of patience, and willingness to modify and accommodate. Not easy for someone with my personality, and high need for control, but I've found out that it's easier to do those things than to fight and deny.
I'm glad you are finding the info here to be as helpful as I did. I'm still learning new things.
Suze
Welcome Tracey! I know, I think we all went through the denial stage. I was dx about a year ago.
I did go on Entocort within a month and had really fast results, but like Tex said, it only makes you FEEL better, but it doesn't HEAL.
I did get the Enterolab panels A and C, but the whole think didn't work for me because I am IgA deficient, so I had to do the elimination diet. I took gluten, dairy, and soy out. They are the top three inflammation producers. It takes a while of being free of these to start to see a difference. Hang in there.
Also, while we are in a flare, it is wise to also eliminate "irritant foods" like RAW FRUITS AND VEGGIES, citrus, tomatoes, beans, oats ( fiber) and maybe even coffee and tea. You may be asking by now " what can I eat?" We basically start this process by eating meats, eggs, COOKED veggies, rice and rice products, homemade broth, Chex cereals with almond milk, applesauce, almond butter maybe, maybe corn tortillas.... When it comes to what each of us eat when we are at our worst, it varies somewhat.
I know it seems overwhelming right now, but if you can just think of this time period as the time you are healing your gut, it may help to stick to it. After weaning down off Entocort ( 6 months total), I have been able to add many things back in. I am loving my salads again :) I only go once a day and have my life back! It can be done! I still must stay GF, DF, And mostly SF, but things are so much better.
Good luck and keep us posted
Leah
I did go on Entocort within a month and had really fast results, but like Tex said, it only makes you FEEL better, but it doesn't HEAL.
I did get the Enterolab panels A and C, but the whole think didn't work for me because I am IgA deficient, so I had to do the elimination diet. I took gluten, dairy, and soy out. They are the top three inflammation producers. It takes a while of being free of these to start to see a difference. Hang in there.
Also, while we are in a flare, it is wise to also eliminate "irritant foods" like RAW FRUITS AND VEGGIES, citrus, tomatoes, beans, oats ( fiber) and maybe even coffee and tea. You may be asking by now " what can I eat?" We basically start this process by eating meats, eggs, COOKED veggies, rice and rice products, homemade broth, Chex cereals with almond milk, applesauce, almond butter maybe, maybe corn tortillas.... When it comes to what each of us eat when we are at our worst, it varies somewhat.
I know it seems overwhelming right now, but if you can just think of this time period as the time you are healing your gut, it may help to stick to it. After weaning down off Entocort ( 6 months total), I have been able to add many things back in. I am loving my salads again :) I only go once a day and have my life back! It can be done! I still must stay GF, DF, And mostly SF, but things are so much better.
Good luck and keep us posted
Leah
Tracy, Just to add to the good advice you've already received, I strongly urge you to get the soy out of your diet and see what impact that has. I went GF and DF first, and took Entocort, but even on Entocort I really didn't turn the corner until I eliminated soy. Then the gurgling and constant irritation stopped. When I did the Enterolab tests my reaction to soy was even higher than my reaction to gluten, dairy or eggs. Even now, and I believe I'm in remission, if I get accidentally glutened I'll feel off but usually don't have any symptoms that will rearrange my day. If I get accidentally 'soyed'-- look out. I will gurgle, have numerous trips to the bathroom with some aggressive motility, and eventually I'll have 'mud'. It might be worth while to ditch the soy too. It's not easy by the way but it is necessary for those of us that react strongly to soy. My guess is that you'd know within a week to 2 weeks if soy is an issue. Maybe sooner.
take care,
Carol
take care,
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 Tracey, I'm new here too. Was diagnosed first part of January, went GF, DF and SF almost immediately. I took pepto Bismol and immodium when the D was bad those first couple weeks, but no Entocort. My diet consisted of chicken soup, softly-cooked vegetables, bananas, avocados, grass fed lean beef patties, almond milk and almond and cashew butter, and every other day I would make juices with whatever fruits and vegetables I had on hand. I found I felt better eliminating rice and other grains for the most part. For a week now I only go once a day and my tummy feels normal. I try to relax a bit more than I did. Stress is not your friend. And I make sure I get enough sleep each night. I know everyone is different, but for the time being this is what works for me. I did do the Enterolab panels A and C but have not received results back yet.
Glad you found us, and hope it works out well for you! I know this site has been a godsend for me. Also, Tex's book (see upper right-hand corner of this page) is great.
Let us know how you're doing.
Jean
Glad you found us, and hope it works out well for you! I know this site has been a godsend for me. Also, Tex's book (see upper right-hand corner of this page) is great.
Let us know how you're doing.
Jean
Welcome..you will learn alot here and no one will think your questions are crazy! I haven't posted lately mostly because I'm doing very well. I did entocort but never felt it did much of anything for me...by the time I started it I was gf/df/sf and still needed to take immodium daily with the entocort to get out of the house.
I have my life back..unfortunately I had to give dairy up (thought I had successfully added that back)..soy doesn't seem to bother me. Ya..I was sad and more than pissy about giving up cheese again. Not that I ate much of it but it was nice on the occasional pizza! Not being able to eat with the coworkers is a pain socially...can still have wine or a margarita with them though.
I did the Enterolab testing and found it helpful. It's not too hard to cut offending food out and hold the line once you start to see results. I also am better with daily l-glutamine and probiotics..I know that is different for everyone here.
Keep the faith-
HockeyMom
I have my life back..unfortunately I had to give dairy up (thought I had successfully added that back)..soy doesn't seem to bother me. Ya..I was sad and more than pissy about giving up cheese again. Not that I ate much of it but it was nice on the occasional pizza! Not being able to eat with the coworkers is a pain socially...can still have wine or a margarita with them though.
I did the Enterolab testing and found it helpful. It's not too hard to cut offending food out and hold the line once you start to see results. I also am better with daily l-glutamine and probiotics..I know that is different for everyone here.
Keep the faith-
HockeyMom
"Do what you can, with what you have, where you are"-Teddy Roosevelt
HI Tracey!
Don't have too much to add. When I first came on the forum in August I had already given up gluten and dairy and still was having some D. Though my nausea, pain and bloating had gone down significantly. Then...I believe it was Leah's post... that saved my life as she had mentioned the irritant type foods and I was totally blown away. I was eating salads, veggies, hummis (bad) other legumes...totally staying away from gluten and dairy and wondering why the heck the D just wouldn't stop. I opted for the Pepto treatment as I had lost too much weight and had a family to take care of. I immediately went to normal bowel movement after that. I did that for 3 months and am now med free for over a month now with no issues.
Just fyi....there is a member on here who does do Entocort and Pepto. Maybe you could start with 4 Peptos a day and see how that works till the Entocort kicks in....sometimes (I've read) it can take a little while. As for Asacol, that made me worse and Tex has a good explanation for why it doesn't work for a lot.
Good luck and remember it takes a while for the gut to heal. Be patient!
AS for probiotics, I'm totally terrified of taking them but plan on trying Culturelle (the dairy free one) maybe within a year. Not something I'm itchin' to dive into. I took them for 2 years and apparently they didn't help at all.
Again, welcome and feel free to ask any questions!
Terri
Don't have too much to add. When I first came on the forum in August I had already given up gluten and dairy and still was having some D. Though my nausea, pain and bloating had gone down significantly. Then...I believe it was Leah's post... that saved my life as she had mentioned the irritant type foods and I was totally blown away. I was eating salads, veggies, hummis (bad) other legumes...totally staying away from gluten and dairy and wondering why the heck the D just wouldn't stop. I opted for the Pepto treatment as I had lost too much weight and had a family to take care of. I immediately went to normal bowel movement after that. I did that for 3 months and am now med free for over a month now with no issues.
Just fyi....there is a member on here who does do Entocort and Pepto. Maybe you could start with 4 Peptos a day and see how that works till the Entocort kicks in....sometimes (I've read) it can take a little while. As for Asacol, that made me worse and Tex has a good explanation for why it doesn't work for a lot.
Good luck and remember it takes a while for the gut to heal. Be patient!
AS for probiotics, I'm totally terrified of taking them but plan on trying Culturelle (the dairy free one) maybe within a year. Not something I'm itchin' to dive into. I took them for 2 years and apparently they didn't help at all.
Again, welcome and feel free to ask any questions!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Tracy (and all), you are right to be guarded about legumes. If you react to soy or peanuts, then it's good to avoid other legumes too. I did a food challenge with peanuts and found that I ache all over the next day after I've eaten peanuts. No D or nausea, but major achiness. I avoid all legumes at this point.
Having said that I found a hummus recipe made from roasted cauliflower. I've never cared for cauliflower, but I love this recipe. Roasted cauliflower is the base. All of the other ingredients are the same as for any hummus-- garlic, lemon juice, tahini (I substitute almond butter), cumin, etc. So it's often a matter of substituting what you can have for what you have to give up.
take care,
Carol
Having said that I found a hummus recipe made from roasted cauliflower. I've never cared for cauliflower, but I love this recipe. Roasted cauliflower is the base. All of the other ingredients are the same as for any hummus-- garlic, lemon juice, tahini (I substitute almond butter), cumin, etc. So it's often a matter of substituting what you can have for what you have to give up.
take care,
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