Hi Everyone,
After being diagnosed in Feb 2010 with LC I am now experiencing my third relapse. After my initial dx I was put on entecort and immediately returned to a normal life. The "normalcy" continued for four months without entecort and without changing my diet. (As many of you have mentioned my doctor did not even discuss the topic of dietary changes.) He did however test me for celiac and the test came back negative. I had another relapse in October of 2011 and again went on the entecort. Again I lived symptom free for 4 months while on, and after weaning off the entecort. I am now experiencing symptoms again but the difference is that this time the entecort isn't working as well. I've been on it for 3 weeks now with some relief but not like the other two times. Can this typically happen? If so do some of you take Imodium or PB while on entecort? One thing that gave me peace of mind was thinking that I responded well to entecort.
In the meantime, after finding your site, and reading where many of you had further testing done through EnteroLab, I sent off a stool specimen and received the following results:
Gluten sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 8 units (Normal range is less than 10 Units)
Fecal Anti-tissue Transglutaminase IgA 3 units (Normal range is less than 10 units)
Quantitative Microscopic Fecal Fat Score 435 units (Normal range is less than 300 units)
Fecal Anti-casein (cow's milk) IgA 5 units (Normal range is less than 10 units)
HLA-DQB1 Molecular analysis, Allele 1 0202
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: LA-DQ ,1 (Subtype, 2,5)
I can't say I understand the results even with the explanation from the lab. However everything seems normal, to a novice like me, except for the Quantitative Microscopic Fecal Fat Score.
I then had further testing at the suggestion of a naturopath. Had a blood sample drawn and sent to ALCAT. The results were as follows:
Severe intolerance to baker's yeast; Moderate intolerances to black pepper, cauliflower, cinnamon, cow's milk, fructose, onions, shrimp, green beans, turkey; Mild intolerances to bananas, cabbage, cantaloupe, cocoa, eggs, garlic, peas, lamb, peanuts, pears, pork, soybeans, strawberries, vanilla, walnuts. There was a moderate reaction to gluten/gliadin but the only recommendation was to avoid barley. It also showed a mild reaction to casein which is contradictory to EnteroLab's findings.
Are any of you on a GF and yeast free diet? I was also wodering if any of you have tried the Specific Carbohydrate diet or the GAPS diet? And if so what were the results?
Thanks to any of you who take the time to read this. I posted all the above earlier but can't find my post, so not sure I was successful. With the holidays just around the corner I can't wrap my mind around the fact that I can't eat my favorite foods. Oh....and what about wine?
This is all so confusing and discouraging. It's hard to stay positive about the future at times.
Take care and hope to hear back from some of you.
Laine
Questions about Entecort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Yes, we have found that each time someone stops using Entocort and then starts using it again, it is slightly less effective, so it takes longer to work. Eventually we reach a point where it no longer works for us, at least not at labeled rates.Laine wrote:Can this typically happen? If so do some of you take Imodium or PB while on entecort? One thing that gave me peace of mind was thinking that I responded well to entecort.
You have extremely unusual test results. Very, very few people who have LC are not sensitive to gluten. Likewise for casein. The stool tests used by EnteroLab are much, much more reliable than any blood tests in most cases.
So here is what I think is happening. I suspect that you have selective IgA deficiency. As you noted, all of your numbers (except the fecal fat score) are far too low. IOW, virtually no one tests that low unless they have selective IgA deficiency.
The EnteroLab tests are ELISA tests, so they detect IgA antibodies in stool. If someone is IgA deficient, they are not capable of producing normal amounts of Immunoglobulin A. Therefore, they cannot produce normal amounts of antibodies to those allergens, even though they may be highly sensitive to them.
We have several other members with the same problem. Approximately 1 in 300 people in this country have selective IgA deficiency (more or less — some sources quote other statistics, up to 1 in 500, for example)
If I were in your shoes, I would ask my doctor to rule out selective IgA deficiency with a simple blood test. It's important for you to know whether or not you have it, because if you should ever need a blood transfusion, not being aware of this could lead to a very dangerous reaction if the transfusion involved whole blood.
Your fecal fat score indicates significant small intestinal damage. This is almost surely due to gluten sensitivity. If you have selective IgA deficiency, you may also be deficient in your ability to produce Immunoglobulin G (IgG). Your doctor should check for that, also. The point is, if you are incapable of producing normal amounts of either IgA, or IgG (or both), then your celiac blood test result is also worthless, because that test uses a combination of both IgA and IgG in the blood, and if either one is compromised, then the test can not be trusted, because it will almost surely give a false negative result.
If your fecal fat score was also normal, I would say that maybe you are simply not sensitive to these foods, but with an elevated fecal fat score, you definitely have small intestinal damage, and the most likely cause of that damage is gluten sensitivity.
Please have your doctor check your ability to produce normal levels of Immunoglobulins.
Tex
P. S. Wines are usually safe for us, except that some of us are sensitive to sulfites, and some wines have high sulfite levels. Avoid blended alcoholic beverages, such as wine coolers, because such blended products often contain gluten.
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 Laine,
I'm sure others will be writing about your testing. Diet is key. Many others have been able to get off of Entocort completely once they've made sufficient diet changes. You probably will also.
Gloria
Almost all of us are on a GF diet. I'm on a yeast-free diet, but only because I can no longer make yeast breads due to a lack of suitable grains. Some are on the SCD diet, but it allows dairy, and most of us cannot eat dairy due to the casein in it.Are any of you on a GF and yeast free diet? I was also wodering if any of you have tried the Specific Carbohydrate diet
My experience with Entocort has been the same as yours. It helped me within 4 weeks the first time I was on it. When I went off of it the first time and went back on it, it helped me immediately. Each subsequent time I went off and on it, however, it became less effective. Last year when I went off of it, it didn't help much at all. I waited the month that it took to be effective the previous time, but I didn't get any better. The only improvement I had was a lessening in the urgency. I finally realized that it wasn't going to get any better and I began taking 1/2 Imodium a day and reduced the Entocort to two pills a day. That finally brought some success. I have recently started taking Claritin, an antihistamine, and it seems to be helping, too. I'm presently taking 2 Entocort pills one day and 1 Entocort pill the next. I don't plan on completely getting off Entocort anymore. I may slowly try to reduce to 1 pill per day and stay on that. I can't take the risk of not having it help at all.after weaning off the entecort. I am now experiencing symptoms again but the difference is that this time the entecort isn't working as well. I've been on it for 3 weeks now with some relief but not like the other two times. Can this typically happen? If so do some of you take Imodium or PB while on entecort?
I'm sure others will be writing about your testing. Diet is key. Many others have been able to get off of Entocort completely once they've made sufficient diet changes. You probably will also.
Gloria
You never know what you can do until you have to do it.
Thank you so much Tex and Gloria for your replies. I can't believe that my test results are so unique! I will definitely get the testing you've recommended Tex. I also see where you've written a book about MC. What is the title? I'd like to order it. Gloria, thanks for sharing your Entocort experiences. Very similar to mine.
Hi Laine,
You're very welcome.
The title of the book is Microscopic Colitis. There's a link to an Amazon listing for it at the upper right-hand corner of this page, or you can find links to other places where it can be ordered, here.
Tex
You're very welcome.
The title of the book is Microscopic Colitis. There's a link to an Amazon listing for it at the upper right-hand corner of this page, or you can find links to other places where it can be ordered, here.
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 Laine,
I too had the same results with Entorcort. It helped me immensely the 1st and second time I was put on it but this last time (beg. of September) it did nothing for me even @ 9mg dosage. I switched to Liadal, which helped decrease my symptoms and got me back to normans. I also need to stress the importance of diet change. I am GF/DF/SF and really watch everything that I eat. I have gone more towards the Paleo diet, rather than the GAPS or the SCAD, as it just made more sense to me and to folks with GI issues. The no grain, no dairy thing really works for me!You may want to check it out! Good luck to you. Also, while I did not have testing done with Entorlab, I did have MRT testing done, as my insurance company would pay for it. I got a lot of useful results from this testing and have taken out both chicken and beef as they were high yellow for me. Most of the other foods, I had already figured out and taken out of my diet by trial and error(sweet potato, wheat, corn, cheese, aspartame, whey, cottage cheese, and others).
Cathy
I too had the same results with Entorcort. It helped me immensely the 1st and second time I was put on it but this last time (beg. of September) it did nothing for me even @ 9mg dosage. I switched to Liadal, which helped decrease my symptoms and got me back to normans. I also need to stress the importance of diet change. I am GF/DF/SF and really watch everything that I eat. I have gone more towards the Paleo diet, rather than the GAPS or the SCAD, as it just made more sense to me and to folks with GI issues. The no grain, no dairy thing really works for me!You may want to check it out! Good luck to you. Also, while I did not have testing done with Entorlab, I did have MRT testing done, as my insurance company would pay for it. I got a lot of useful results from this testing and have taken out both chicken and beef as they were high yellow for me. Most of the other foods, I had already figured out and taken out of my diet by trial and error(sweet potato, wheat, corn, cheese, aspartame, whey, cottage cheese, and others).
Cathy
Thank you Cathy! I feel I can move on now with sound advice from all of you! So grateful I found this website. I will buy your book Tex.
Another question...did you change your diet overnight by immediately eliminating G,D, and S? Or did you start with just one? Not sure where or how to start so have only been eating coconut yoghurt and organic applesauce and broth. As I mentioned before, I don't expect to get help from my doctor regarding diet.
Also, I take supplements: calcium, a multi V, extra B, C and D, glucosamine/chondroitin/mms, and fish oil. Besides all this I take 10 mg of fluoxetine a day. Any ideas if any are a trigger?
Thanks so much! I truly appreciate you!
Laine
Another question...did you change your diet overnight by immediately eliminating G,D, and S? Or did you start with just one? Not sure where or how to start so have only been eating coconut yoghurt and organic applesauce and broth. As I mentioned before, I don't expect to get help from my doctor regarding diet.
Also, I take supplements: calcium, a multi V, extra B, C and D, glucosamine/chondroitin/mms, and fish oil. Besides all this I take 10 mg of fluoxetine a day. Any ideas if any are a trigger?
Thanks so much! I truly appreciate you!
Laine
Hi Laine.
As soon as I read your results, I had a feeling that you are like me! My Enterolab results were very similar and I at first celebrated because I thought food wasn't my issue. But then my brain kicked in and I called the lab. They said the same thing Tex said. Get tested for IgA/IgG deficiency. My doctor was very impressed that I knew to be tested and ordered the test right away. Low and behold : IgA deficiency! Then they sent me to an immunologist for more testing and I found I am also deficient in two of the four IgG antibodies. Bummer.
What does this mean? We have different antibodies for different systems in out bodies to help fight off invaders. IgA is for the mucus systems (intestines, vaginal,lungs ,respiratory...) The doc said that people with this will usually either show signs of multiple upper respiratory infections that need constant antibiotics or autoimmune diseases. BINGO! I now wear a medical bracelet that alerts medics to this because if I am given blood, I could go into anaflactic shock. Scary.
As for the diet. I had to do this with no test results. Of course I went through denial at first, but I was determined to get better. I did go on Entocort. I went GF and DF. I also gave up all night shades ( potato, tomato, peppers, eggplant), raw fruits and veggies, and fiber foods like beans. I did it all at once knowing that if I actually HEALED MY INTESTINES I could then try to add some of the "irritants" back in. My recovery was gradual, but successful. I had to give up soy half way through because I was realizing that even when I used GF soy sauce, my gut was protesting.
It took me about 6-7 months of gradual stepping down of entocort and being strict with my diet, but I am doing well and have been able to add many things back into my diet ( salad, beans, small amounts of fruit). I can eat rice and corn products also with no ill effects. And if I accidentally ingest a small amount of any of the "inflammatory" foods, I don't react very much. Maybe just some gas.
Okay, that was a long one but I thought it would be nice to hear from someone who is in a similar situation. I just want to add that when I was at my worst, I gave up taking most of my supplements. They have other ingredients that could be making things worse. I have added most back in.
Take care and please keep us posted
Leah
As soon as I read your results, I had a feeling that you are like me! My Enterolab results were very similar and I at first celebrated because I thought food wasn't my issue. But then my brain kicked in and I called the lab. They said the same thing Tex said. Get tested for IgA/IgG deficiency. My doctor was very impressed that I knew to be tested and ordered the test right away. Low and behold : IgA deficiency! Then they sent me to an immunologist for more testing and I found I am also deficient in two of the four IgG antibodies. Bummer.
What does this mean? We have different antibodies for different systems in out bodies to help fight off invaders. IgA is for the mucus systems (intestines, vaginal,lungs ,respiratory...) The doc said that people with this will usually either show signs of multiple upper respiratory infections that need constant antibiotics or autoimmune diseases. BINGO! I now wear a medical bracelet that alerts medics to this because if I am given blood, I could go into anaflactic shock. Scary.
As for the diet. I had to do this with no test results. Of course I went through denial at first, but I was determined to get better. I did go on Entocort. I went GF and DF. I also gave up all night shades ( potato, tomato, peppers, eggplant), raw fruits and veggies, and fiber foods like beans. I did it all at once knowing that if I actually HEALED MY INTESTINES I could then try to add some of the "irritants" back in. My recovery was gradual, but successful. I had to give up soy half way through because I was realizing that even when I used GF soy sauce, my gut was protesting.
It took me about 6-7 months of gradual stepping down of entocort and being strict with my diet, but I am doing well and have been able to add many things back into my diet ( salad, beans, small amounts of fruit). I can eat rice and corn products also with no ill effects. And if I accidentally ingest a small amount of any of the "inflammatory" foods, I don't react very much. Maybe just some gas.
Okay, that was a long one but I thought it would be nice to hear from someone who is in a similar situation. I just want to add that when I was at my worst, I gave up taking most of my supplements. They have other ingredients that could be making things worse. I have added most back in.
Take care and please keep us posted
Leah
Hi Laine,
Lots of good responses here. I wanted to comment on the wine. If you suspect that wine is bothering you then it probably is. If you have a problem with yeast, wine will aggravate your gut, as brewer's and baker's yeast are closely related. Sorry to be the bearer of bad news, but as many have stated, if we can heal the gut then we can add back some foods.
Hope that helps
Susie
Lots of good responses here. I wanted to comment on the wine. If you suspect that wine is bothering you then it probably is. If you have a problem with yeast, wine will aggravate your gut, as brewer's and baker's yeast are closely related. Sorry to be the bearer of bad news, but as many have stated, if we can heal the gut then we can add back some foods.
Hope that helps
Susie
Hi Leah,
Sounds like we're in the minority! Just to make sure I understand this, is it true that if you're deficient in IgA that any test results will be inaccurate? That your body needs to produce the right levels of the antibody in order for reliable testing? Tex also mentioned this.
I called my doctor and am seeing him next Monday to go over the lab results and to talk to him about the deficiency issues.
I'm past the deniel stage (finally) and am now in the WTF stage! Will miss so many of my favorite foods and really don't think it's one bit fair:( But I know I'll eventually wrap my mind around this and will more than likely lead a healthier life than ever before. I've always had healthy eating habits though so it's hard to believe this is actually happening. My husband has offered to go GF with me and that was awfully nice of him!
I really appreciate all your insights/recommendations/support. Thank you!!
Laine
Sounds like we're in the minority! Just to make sure I understand this, is it true that if you're deficient in IgA that any test results will be inaccurate? That your body needs to produce the right levels of the antibody in order for reliable testing? Tex also mentioned this.
I called my doctor and am seeing him next Monday to go over the lab results and to talk to him about the deficiency issues.
I'm past the deniel stage (finally) and am now in the WTF stage! Will miss so many of my favorite foods and really don't think it's one bit fair:( But I know I'll eventually wrap my mind around this and will more than likely lead a healthier life than ever before. I've always had healthy eating habits though so it's hard to believe this is actually happening. My husband has offered to go GF with me and that was awfully nice of him!
I really appreciate all your insights/recommendations/support. Thank you!!
Laine
Yes Laine. I don't produce hardly any IgA antibodies and since that is what is measured with the Enterolab tests, low numbers show up. I was very confused and didn't understand then where the inflammation was coming from if it wasn't from high antibody count. It has to do with t-cells . It's complicated.
Nice of your husband to go Gf with you. It's really not that hard. It's giving up so many things at once that is hard. My husband still eats regular bread, but I don't really serve it for dinner anymore. pizza is what I miss so much.
The more you read, the more you will understand. As for wine, I had to give up red wine but I think it is the histamines in it because I can tolerate white now. I couldn't drink either when I was bad. Although vodka works very nicely ! As long as it's not with anything too acid or too much fruit juice, it's my best bet.
I totally get how it feels so unfair when you are already taking care of yourself. I am a personal trainer and use to eat tons of veggies and fruits and fiber. Now I am a total carnivore! Bacon and egg in the morning and protein with each meal after. Funny. But I actually feel better now then I did when I had "IBS" symptoms for years. There is hope :)
Leah
Nice of your husband to go Gf with you. It's really not that hard. It's giving up so many things at once that is hard. My husband still eats regular bread, but I don't really serve it for dinner anymore. pizza is what I miss so much.
The more you read, the more you will understand. As for wine, I had to give up red wine but I think it is the histamines in it because I can tolerate white now. I couldn't drink either when I was bad. Although vodka works very nicely ! As long as it's not with anything too acid or too much fruit juice, it's my best bet.
I totally get how it feels so unfair when you are already taking care of yourself. I am a personal trainer and use to eat tons of veggies and fruits and fiber. Now I am a total carnivore! Bacon and egg in the morning and protein with each meal after. Funny. But I actually feel better now then I did when I had "IBS" symptoms for years. There is hope :)
Leah
Laine,
Your husband is a saint, to be willing to adopt your diet along with you. Being able to keep gluten and any other ingredients to which you are sensitive, completely out of the kitchen, will make your life so much easier, and it should also help to speed up your journey back to good health. Kudos to him. Not all of us are so fortunate, because as you know, asking someone else to change their diet so drastically is asking a lot.
In case you're wondering why you would suddenly develop multiple serious food sensitivities, after years of healthy eating, Dr. Fine's research has determined that when the genes that predispose to LC (or CC) are triggered, the genes that predispose to gluten sensitivity are also triggered at the same time, and this event also triggers certain other food sensitivities, as well. So it's not really a slowly-developing process. Until the critical stage is reached, where the genes are triggered, development may occur slowly, but once the genes are switched on, then our symptoms (and our health) tend to head south in a hurry.
Tex
Your husband is a saint, to be willing to adopt your diet along with you. Being able to keep gluten and any other ingredients to which you are sensitive, completely out of the kitchen, will make your life so much easier, and it should also help to speed up your journey back to good health. Kudos to him. Not all of us are so fortunate, because as you know, asking someone else to change their diet so drastically is asking a lot.
In case you're wondering why you would suddenly develop multiple serious food sensitivities, after years of healthy eating, Dr. Fine's research has determined that when the genes that predispose to LC (or CC) are triggered, the genes that predispose to gluten sensitivity are also triggered at the same time, and this event also triggers certain other food sensitivities, as well. So it's not really a slowly-developing process. Until the critical stage is reached, where the genes are triggered, development may occur slowly, but once the genes are switched on, then our symptoms (and our health) tend to head south in a hurry.
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.
No problem Laine. I started first with going gluten free back in December. I then eliminated dairy probably in Feb/March and then soy. It was overwhelming @ first but I don't have any problems eating this way now. They have so many products that are gluten free now. The good thing now is that I cook more and I read all labels to make sure that I'm buying and cooking the most healthy food possible. I live on a horse farm and my husband and I have kind of jokingly thought about buying some cattle, pigs, lambs, etc., so that we can have our own grass fed meat and know exactly what we are eating! I haven't been able to get my hubby on the GF wagon yet but I pass along all of the research that I find on the negative effects of gluten and how our food has changed significantly(especially wheat). Maybe Tex can chime in on the Prozac as i think it may be a trigger for some of us?? Definitely check your other supplements to make sure they are gluten and soy free. I had to buy a special multivitamin @ Whole Foods.laine wrote:Thank you Cathy! I feel I can move on now with sound advice from all of you! So grateful I found this website. I will buy your book Tex.
Another question...did you change your diet overnight by immediately eliminating G,D, and S? Or did you start with just one? Not sure where or how to start so have only been eating coconut yoghurt and organic applesauce and broth. As I mentioned before, I don't expect to get help from my doctor regarding diet.
Also, I take supplements: calcium, a multi V, extra B, C and D, glucosamine/chondroitin/mms, and fish oil. Besides all this I take 10 mg of fluoxetine a day. Any ideas if any are a trigger?
Thanks so much! I truly appreciate you!
Laine
Yes, as Cathy mentioned, Fluoxetine (Prozac) does indeed trigger MC for some of us. Anti-deppressants present sort of a paradox for us, because in a few cases (probably where stress is an overwhelming factor driving our symptoms), SSRIs and other types of anti-depressants can actually help to resolve MC symptoms for that category of patients. Unfortunately though, for some of us, the increased serotonin that SSRIs promote in our intestines, causes D. For many such patients, discontinuing the use of the drugs will bring remission from their MC symptoms.Cathy wrote:Maybe Tex can chime in on the Prozac as i think it may be a trigger for some of us??
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.