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Since Dec. 8th I've been on Lialda. The GI Dr. put me on at the end of our appt. and then left to find me samples. I didn't get clarity about his thinking. When I googled it, its for UC and I was diagnosed with CC. He doesn't do Enterolab and is in the same group of Drs. with Craig Lubin. I'm not sure how useful the Lialda is. If I eat the foods I know I don't react to unless I am really inflamed, I have 3-4 BM/day most are partially formed. This is better than straight D previously. Its not as good as entocort where BM's cleared up 2nd day and remained good even when I was not as strict for my 6 wk. entocort treatment. However when I went off, the D. returned.
1. Is it worth while to change to Dr. Lubin as a couple of you have used him as your GI Dr.?
2. Does Medicare pay for Enterolab when a Dr. requests it?
3. Will I be able to understand the Enterolab results when I receive them without a Dr's interpretation? I know this site would help with interpretation if I don't use a Dr.
4. How many Enterolab tests would you recommend I obtain?
Thanks so much for your knowledgeable highly valued input. I was a colicy baby. I wonder how many of us were. I also wonder how many of us are O blood types. If you are familiar with the book "Eat Right for Your Blood Type", according to the book, O's tend to be sensitive/allergic to wheat and diary.
Sue
I'm on Lialda any thoughts, questions about enterolab test
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Sue,
A few years ago, my GI doctor had me try Lialda to see if it would help in hopes I could reduce the amount of Entocort I was taking. It's an anti-inflammatory. It didn't help and for me, it greatly increased the amount of gas I had and the amount of trapped gas. Based on trial and error with medications, I'm probably somewhat sensitive to salicylates, which was why I had so much trouble with it.
Karen
A few years ago, my GI doctor had me try Lialda to see if it would help in hopes I could reduce the amount of Entocort I was taking. It's an anti-inflammatory. It didn't help and for me, it greatly increased the amount of gas I had and the amount of trapped gas. Based on trial and error with medications, I'm probably somewhat sensitive to salicylates, which was why I had so much trouble with it.
Karen
Hello Sue, once you get your enterolab results back there are not difficult to understand, they come with an interpretation, they are quite standard, but very good to understand. Especially with some help of the people on this support group, in particular Tex. I would not worry about that. Which tests are the best to choose, for that you can check the information on the enterolab website, there is some information and advice on it.
I know now, from this support group, that gluten, diary and soy are the most important intolerances with MC, so also the most important things to get tested (if you want to do the enterolab testing). On the website of enterolab are several options and testing packages. The gluten intolerance test including a gene test for a while offered a free milk intolerance test (don't if they still offer it). And the soy can be tested separate but also together with egg and yeast (what is a bit cheaper).
What you choose also depend on how much money you can/want to spend and if you get it reimbursed or not.
My choice was to do the gene testing + gluten, soy, dairy, yeast and egg. I just was curious if I had the celiac genes and wanted to rule out every possible intolerance.
I know now, from this support group, that gluten, diary and soy are the most important intolerances with MC, so also the most important things to get tested (if you want to do the enterolab testing). On the website of enterolab are several options and testing packages. The gluten intolerance test including a gene test for a while offered a free milk intolerance test (don't if they still offer it). And the soy can be tested separate but also together with egg and yeast (what is a bit cheaper).
What you choose also depend on how much money you can/want to spend and if you get it reimbursed or not.
My choice was to do the gene testing + gluten, soy, dairy, yeast and egg. I just was curious if I had the celiac genes and wanted to rule out every possible intolerance.
Dear Sue:
I was a colicky baby, I have type O blood and I have CC. Maybe we are twins separated at birth (just kidding). During a severe flare of CC, my GI put me on Lialda. I took it for two weeks and saw NO improvement, so I stopped it. Both Lialda and Entocort were developed for UC. CC, and it's evil twin, LC, are relatively rare. Since these diseases can't be big moneymakers for drug companies, they are not developing drugs to treat these. The result is that GI docs prescribe drugs developed for UC and Chron's, presumably on the theory that all colitis results from colon inflammation and the drugs are anti-inflammatories. Most CC patients who communicate with this site report improvement of their symptoms when taking Entocort. In addition, limited studies on the use of Entocort on CC patients report that most patients studies also respond to Entocort. Fewer CC patients report improvement when taking Lialda. I don't know if Medicare will pay for Enterolab testing. I would change to Dr. Lubin and get the Enterolab testing. I have been able to maintain remission for three months by going GLUTEN FREE but will pursue Enterolab testing if I can't maintain remission by diet alone. Good Luck, Sheila PS-have not read book re diets and blood types, but would follow dietary recommendations as long as I got balanced nutrition.
I was a colicky baby, I have type O blood and I have CC. Maybe we are twins separated at birth (just kidding). During a severe flare of CC, my GI put me on Lialda. I took it for two weeks and saw NO improvement, so I stopped it. Both Lialda and Entocort were developed for UC. CC, and it's evil twin, LC, are relatively rare. Since these diseases can't be big moneymakers for drug companies, they are not developing drugs to treat these. The result is that GI docs prescribe drugs developed for UC and Chron's, presumably on the theory that all colitis results from colon inflammation and the drugs are anti-inflammatories. Most CC patients who communicate with this site report improvement of their symptoms when taking Entocort. In addition, limited studies on the use of Entocort on CC patients report that most patients studies also respond to Entocort. Fewer CC patients report improvement when taking Lialda. I don't know if Medicare will pay for Enterolab testing. I would change to Dr. Lubin and get the Enterolab testing. I have been able to maintain remission for three months by going GLUTEN FREE but will pursue Enterolab testing if I can't maintain remission by diet alone. Good Luck, Sheila PS-have not read book re diets and blood types, but would follow dietary recommendations as long as I got balanced nutrition.
Hi Sue,
You've already received some great advice, and I think that most of your questions have been answered, so all I can do is agree what what has already been posted. Sheila is quite correct, of course, in pointing out that there are no drugs labeled specifically for MC. MC, (CC and LC), is the proverbial red-headed stepchild of the IBDs, and the medical community doesn't show it much respect.
Lialda is one of the more recent versions of the mesalamine-based group of meds known as 5-ASA drugs, (Apriso, Asacol, Canasa, Lialda, Pentasa, Rowasa, Salofalk, etc.). Some doctors are afraid to prescribe Entocort for long-term use, (since it's a corticosteroid), and they prefer to prescribe one of the 5-ASA drugs for use as a maintenance treatment, thinking that they are generally safer. It's possible that they might be safer, but most doctors seem to be unaware that the long-term use of some of the 5-ASA meds has been documented to cause chronic pancreatitis, a very serious side effect, for those who are unfortunate enough to develop it. We have at least a couple of members who have developed this problem, as a result of taking one of the 5-ASA meds. Asacol is the brand most often connected with chronic pancreatitis, but that is probably because it has been around the longest. The bottom line is, no drug is totally safe, for everyone.
I also don't know if medicare will pay for Enterolab tests. I would be surprised if they do. Please let us know if you find out that they will indeed pay for the tests.
Over the years, we have done surveys for all sorts of issues that might possibly be connected with the development of MC. According to our survey results, at least 40% of us were colicy babies. The percentage might be much higher than that, though, simply because many of us never discussed that issue with our mothers, so we really don't know. Here's a survey on that issue:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10327
Likewise, according to our survey results, about 45% of us have type "O" blood. Here's a survey on that:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=443
Most doctors probably wouldn't be of much help in interpreting the Enterolab results, unless they support and recommend those tests. As Harma said, the test results will come with interpretations and explanations, and if you have any questions, most members who have been here for a while, can answer your questions. Hopefully, some of the members who have seen Dr. Lubin, will respond to your questions about him.
Good luck, whatever you decide to do.
Tex
You've already received some great advice, and I think that most of your questions have been answered, so all I can do is agree what what has already been posted. Sheila is quite correct, of course, in pointing out that there are no drugs labeled specifically for MC. MC, (CC and LC), is the proverbial red-headed stepchild of the IBDs, and the medical community doesn't show it much respect.
Lialda is one of the more recent versions of the mesalamine-based group of meds known as 5-ASA drugs, (Apriso, Asacol, Canasa, Lialda, Pentasa, Rowasa, Salofalk, etc.). Some doctors are afraid to prescribe Entocort for long-term use, (since it's a corticosteroid), and they prefer to prescribe one of the 5-ASA drugs for use as a maintenance treatment, thinking that they are generally safer. It's possible that they might be safer, but most doctors seem to be unaware that the long-term use of some of the 5-ASA meds has been documented to cause chronic pancreatitis, a very serious side effect, for those who are unfortunate enough to develop it. We have at least a couple of members who have developed this problem, as a result of taking one of the 5-ASA meds. Asacol is the brand most often connected with chronic pancreatitis, but that is probably because it has been around the longest. The bottom line is, no drug is totally safe, for everyone.
I also don't know if medicare will pay for Enterolab tests. I would be surprised if they do. Please let us know if you find out that they will indeed pay for the tests.
Over the years, we have done surveys for all sorts of issues that might possibly be connected with the development of MC. According to our survey results, at least 40% of us were colicy babies. The percentage might be much higher than that, though, simply because many of us never discussed that issue with our mothers, so we really don't know. Here's a survey on that issue:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10327
Likewise, according to our survey results, about 45% of us have type "O" blood. Here's a survey on that:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=443
Most doctors probably wouldn't be of much help in interpreting the Enterolab results, unless they support and recommend those tests. As Harma said, the test results will come with interpretations and explanations, and if you have any questions, most members who have been here for a while, can answer your questions. Hopefully, some of the members who have seen Dr. Lubin, will respond to your questions about him.
Good luck, whatever you decide to do.
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.