Have lurked here a couple of weeks and decided to post.
I am 62, female history:
gallstones/surgery April 2009
WD bile acid/ Welchol Sep 2009
osteo arthritis/NSAIDS 2010
fibromyalgia/tramadol & Neurontin 2011
switched dr/Lyrica Jan 2013
Right after Thanksgiving I got WD in the worst way 20-30 times per day. I thought it was a wicked virus from all the food and people I came in contact with on Thanksgiving.
After a couple of weeks of Imodium and pepto went to dr. Tests, Flagyl and Lomotil. All cultures negative.
Kept trying different tests and meds until February then to GI.
Colonoscopy everything looked fine. Biopsies revealed MC.
Blood tests done here:
http://www.prometheuslabs.com/Products/ ... iagnostics
and now I am dx ulcerative colitis.
Lialda made it worse.
11 days on Nortriptylin and Uceris. Low residue diet.
Was better from day one. Now 1 Norman each morning for 3 days.
Back to GI tomorrow.
After 20+ years of high fiber, low fat, lots of veggies and fruits, only whole grain, now I am back to meat, mashed potatoes, gravy, white bread etc.
I don't feel this diet is healthy and I don't like taking steroids. I REALLY don't like being trapped in my house and afraid to go out. I also REALLY don't like sleeping in diapers.
Does this mean I am getting better, or just that the steroids are masking it?
Would I still be able to tell food intolerances?
Confused Newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our internet family. Wow! You developed a bunch of autoimmune-type disorders in a hurry. Probably precious few mainstream doctors would agree with me, and there's certainly no medical proof to back up this statement, but IMO the underlying cause of all those problems might possibly be too many years of a low-fat, high-fiber diet. Unfortunately, whole grains are not the health food that they are promoted to be. Based on the combined experiences of many members here, such a diet, together with predisposing genes that can be triggered by diet and lifestyle events in the presence of chronic stress, appears to make us vulnerable to the development of autoimmune-type diseases. And many of the medications that are prescribed by our doctors are also responsible for contributing to the cascade of events that leads up to the development of these syndromes.
But the most important individual trigger in your diet (and this is true for virtually all of us) is wheat gluten. The Uceris is probably responsible for your current remission. If you want to control your symptoms without the use of meds, it will be necessary to totally avoid all of the foods in your diet that are causing your immune system to produce antibodies. As long as we avoid those foods 100 %, most of us are able to control our symptoms by diet alone.
Most of us have found that rather than relying on trial and error testing, and various doctor-recommended blood tests that provide very poor reliability for determining food sensitivities, we save a lot of time and anguish if we order stool tests from EnteroLab, in Dallas, TX. They are by far the most reliable, accurate, and sensitive tests available, for determining sensitivities to the most common allergenic foods. https://www.enterolab.com/StaticPages/TestInfo.aspx
And to answer your last question, "It depends on how well the corticosteroid works for us." In most cases, if they work at all, then at least some food sensitivities will be masked. And for some people, they work so well that virtually any food can be eaten without triggering a reaction. As we begin to reduce the dosage, any food sensitivities in our diet will usually become evident.
Please note that we have at least one member who does not have MC, but who completely controls his UC symptoms by diet changes alone. He hasn't posted in a long time, but the last time he posted an update, the diet was working well for him.
As Hippocrates said, “Let food be thy medicine and medicine be thy food”. Unfortunately, it turns out that we have to be very selective of those foods, and we definitely can't blindly follow the recommendations of USDA and mainstream diet "experts".
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Wow! You developed a bunch of autoimmune-type disorders in a hurry. Probably precious few mainstream doctors would agree with me, and there's certainly no medical proof to back up this statement, but IMO the underlying cause of all those problems might possibly be too many years of a low-fat, high-fiber diet. Unfortunately, whole grains are not the health food that they are promoted to be. Based on the combined experiences of many members here, such a diet, together with predisposing genes that can be triggered by diet and lifestyle events in the presence of chronic stress, appears to make us vulnerable to the development of autoimmune-type diseases. And many of the medications that are prescribed by our doctors are also responsible for contributing to the cascade of events that leads up to the development of these syndromes.
But the most important individual trigger in your diet (and this is true for virtually all of us) is wheat gluten. The Uceris is probably responsible for your current remission. If you want to control your symptoms without the use of meds, it will be necessary to totally avoid all of the foods in your diet that are causing your immune system to produce antibodies. As long as we avoid those foods 100 %, most of us are able to control our symptoms by diet alone.
Most of us have found that rather than relying on trial and error testing, and various doctor-recommended blood tests that provide very poor reliability for determining food sensitivities, we save a lot of time and anguish if we order stool tests from EnteroLab, in Dallas, TX. They are by far the most reliable, accurate, and sensitive tests available, for determining sensitivities to the most common allergenic foods. https://www.enterolab.com/StaticPages/TestInfo.aspx
And to answer your last question, "It depends on how well the corticosteroid works for us." In most cases, if they work at all, then at least some food sensitivities will be masked. And for some people, they work so well that virtually any food can be eaten without triggering a reaction. As we begin to reduce the dosage, any food sensitivities in our diet will usually become evident.
Please note that we have at least one member who does not have MC, but who completely controls his UC symptoms by diet changes alone. He hasn't posted in a long time, but the last time he posted an update, the diet was working well for him.
As Hippocrates said, “Let food be thy medicine and medicine be thy food”. Unfortunately, it turns out that we have to be very selective of those foods, and we definitely can't blindly follow the recommendations of USDA and mainstream diet "experts".
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.
Hi Nerdhume,
re: Enterolab tests, most people go with at least the Panel for Gluten, Soy, Dairy and Egg. Eliminating the Big 4 can start most people toward remission.
Some of us have had the 11 antigenic food panel and I think most have found it helpful. But if you were only going to get one, I'd suggest the panel for the Big 4.
Carol
re: Enterolab tests, most people go with at least the Panel for Gluten, Soy, Dairy and Egg. Eliminating the Big 4 can start most people toward remission.
Some of us have had the 11 antigenic food panel and I think most have found it helpful. But if you were only going to get one, I'd suggest the panel for the Big 4.
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
Welcome!
Panel A is the most important one. Panel C is the next tier of food that you'd want to test. Those two cover most of the proteins that you could be producing antibodies to. The "low residue" part is important for now, but once you heal your intestines and feel better, you can test some fruits and veggies back into your diet. Too much sugar is also an aggravator.
I suggest that while you are on the steroids ( yes, they mask reactions), that you at least remove gluten and dairy from your diet. It takes a long time to heal the gut and the faster you take out the biggest offenders, the better. If your test results come back negative, you can always test them back in …. although lactose is tough on any gut that is inflamed.
If you haven't already purchased Tex's book, you might want to do that. it's a great source of info.
I know how you feel about eating foods that don't "seem nutritious". I am a certified personal trainer and nutrition specialist and it horrified me at first that I had to basically give up most vegetables and all fruit! No fiber? what? It seemed all counterintuitive. I know better now. Although I still think that the antioxidants in fruits and veggies are very important, what is MOST IMPORTANT for us is to heal our guts FIRST. That is what most leads to good health.
It's a long road with bumps along the way, but it's been two years now for me ( no steroids for 1 1/2 years) and I have since been able to add many foods back into my diet. I remain gluten, dairy, and soy free but can now eat all vegetables ( even raw), beans , spicy foods, dark soy free chocolate, decaf coffee and tea, white potatoes, alcohol, some tomato products…. all of which I gave up at the beginning. I also drink a "green drink" to assure I am getting enough antioxidants) There is hope.
Good luck. Ask anything and keep us posted on your progress.
Leah
Panel A is the most important one. Panel C is the next tier of food that you'd want to test. Those two cover most of the proteins that you could be producing antibodies to. The "low residue" part is important for now, but once you heal your intestines and feel better, you can test some fruits and veggies back into your diet. Too much sugar is also an aggravator.
I suggest that while you are on the steroids ( yes, they mask reactions), that you at least remove gluten and dairy from your diet. It takes a long time to heal the gut and the faster you take out the biggest offenders, the better. If your test results come back negative, you can always test them back in …. although lactose is tough on any gut that is inflamed.
If you haven't already purchased Tex's book, you might want to do that. it's a great source of info.
I know how you feel about eating foods that don't "seem nutritious". I am a certified personal trainer and nutrition specialist and it horrified me at first that I had to basically give up most vegetables and all fruit! No fiber? what? It seemed all counterintuitive. I know better now. Although I still think that the antioxidants in fruits and veggies are very important, what is MOST IMPORTANT for us is to heal our guts FIRST. That is what most leads to good health.
It's a long road with bumps along the way, but it's been two years now for me ( no steroids for 1 1/2 years) and I have since been able to add many foods back into my diet. I remain gluten, dairy, and soy free but can now eat all vegetables ( even raw), beans , spicy foods, dark soy free chocolate, decaf coffee and tea, white potatoes, alcohol, some tomato products…. all of which I gave up at the beginning. I also drink a "green drink" to assure I am getting enough antioxidants) There is hope.
Good luck. Ask anything and keep us posted on your progress.
Leah
Thanks for all the advice...this newsgroup has been a lifesaver for me. Just reading others embarrassing experiences and knowing I am not alone. My husband is tired of hearing about my BMs, he continues to ask how I am and I don't know any other way to express this.
saw the GI yesterday. Treatment will be 2 months on Uceris which has worked so well for me. June 1st I will stop taking it and followup with him on June 9th. I will continue the Nortriptylin and VSL #3. If the Uceris doesn't bring about remission the next plan is Humira.
I asked him about gluten. He said my blood tests did not show celiac. He also said most of his IBD patients do feel better eating less carbs and that is his recommendation.
My plan is to try low-carb, low-fibre, high-protein. Having read this:
http://www.second-opinions.co.uk/crohns ... zFL7KxOUa8
I was amazed at the success rate. As Tex had said before if an expensive med had that kind of success rate it would be news worthy.
I ordered "Life Without Bread" but will start adapting to the diet while I wait for the book for more specifics. DH needs to lose about 20 lbs, he is supportive and will be on the same plan.
saw the GI yesterday. Treatment will be 2 months on Uceris which has worked so well for me. June 1st I will stop taking it and followup with him on June 9th. I will continue the Nortriptylin and VSL #3. If the Uceris doesn't bring about remission the next plan is Humira.
I asked him about gluten. He said my blood tests did not show celiac. He also said most of his IBD patients do feel better eating less carbs and that is his recommendation.
My plan is to try low-carb, low-fibre, high-protein. Having read this:
http://www.second-opinions.co.uk/crohns ... zFL7KxOUa8
I was amazed at the success rate. As Tex had said before if an expensive med had that kind of success rate it would be news worthy.
I ordered "Life Without Bread" but will start adapting to the diet while I wait for the book for more specifics. DH needs to lose about 20 lbs, he is supportive and will be on the same plan.
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I have owned "Life Without Bread" for about a decade. It is one of the earlier books advising a low carb diet. I cannot remember the details of what he recommends but if he doesn't recommend complete elimination of gluten and dairy you probably will still have problems. I would recommend that you also read Tex's book since it is specific for MC. I ate a low carb diet for years but until I found this site I did not realize how careful I had to be and what foods, although allowable on low carb diets, might still be causing problems.The list of foods I have eliminated is very long but I am no longer living my life in the bathroom. In addition to gluten and dairy I have eliminated soy and eggs, all grains including rice as well as chicken and beef. I found the Enterolab testing very helpful in figuring out what to eliminate. I also was eating very low fiber but have recently been able to up my fiber content in the form of more vegetables. I wish you luck
Jean
Jean
As Jean has said, going "low carb" will probably not do the trick. The thing about gluten is that the antibodies ( that cause the inflammation) have a very long life span . 120 DAYS! That's why it is extremely important to eliminate ALL traces of gluten. Even a little can keep inflammation going. It's hidden in many foods. Soy sauce and licorice are two examples of surprise places it can be found. Reading labels diligently is very important. Dairy's antibodies only last about three days, so it's much easier to rid the body of them.
Also, be aware that just stopping a corticosteroid abruptly can put you right back to where you started within days ( or weeks). Many of us here have had that issue when we stopped Entocort too quickly. Weaning is important. Humira is a pretty serious drug and you'd want to think hard before going on it if you haven't done everything you could with diet first.
The blood test that is available to test for Celiac is almost useless because it only gives a positive reading if you have a tremendous amount of villi atrophy already, so you'd have to have full blown major Celiac to get a positive reading. Most of us have what is called NON-CELIAC GLUTEN SENSITIVITY ( Google it). Our intestinal villi aren't damaged, but we react by producing inflammatory antibodies ( IgA) to it. IgA antibodies is what the Enterolab tests look for.
Leah
Also, be aware that just stopping a corticosteroid abruptly can put you right back to where you started within days ( or weeks). Many of us here have had that issue when we stopped Entocort too quickly. Weaning is important. Humira is a pretty serious drug and you'd want to think hard before going on it if you haven't done everything you could with diet first.
The blood test that is available to test for Celiac is almost useless because it only gives a positive reading if you have a tremendous amount of villi atrophy already, so you'd have to have full blown major Celiac to get a positive reading. Most of us have what is called NON-CELIAC GLUTEN SENSITIVITY ( Google it). Our intestinal villi aren't damaged, but we react by producing inflammatory antibodies ( IgA) to it. IgA antibodies is what the Enterolab tests look for.
Leah