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Hi all - I started entocort about 3 weeks ago and I would say there is definitely improvement - I would say I am feeling about 50% better. I have only had serious D a couple of days here and there but continue to have to go to the bathroom as much as 10x a day, but at least it's more solid and the stomach aches aren't quite as bad. So, I am trying to figure out next steps. As some of you may remember, I did the Enterolab testing and I was negative for all food sensitivities. I continue to be gluten, soy, corn, egg, and dairy free even though the Enterolab didn't find sensitivities and it didn't seem to make a difference at all the two months I did it before I started the entocort. So I am wondering: if I have good days and then some very bad days, does that still mean the entocort is working? Or should I be getting better every day? And, I am thinking about doing MRT testing since I might be IgA deficient (that's what the Enterolab tests for, right?). Sara mentioned a new test this fall so should I wait? And, how do I do MRT testing? Is there a lab like Enterolab? Because if the entocort works I would like to figure out how to someday get off of it (or what to do after I have done some gut healing). Thanks all.
Lisa
questions about MRT testing, entocort, etc
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Hi Lisa,
It's good to read that you're doing better. Yes, nearly all of us find that our treatment program can sometimes be frustrating, as we continue to have bad days mixed in with the good days, but as healing progresses, the bad days should slowly become fewer, and farther between, and the good days should become better, and more consistent.
You're correct - the Enterolab tests detect IgA antibodies, whereas the MRT uses a different technique, so theoretically, at least, it should provide some useful information even in the presence of selective IgA deficiency. The "improved" MRT offering will supposedly include testing for additional foods, so a decision on whether or not to wait for it would depend on how important the added items might seem to you. The existing test already covers a lot of foods and chemicals. I'm not sure what the new changes will do to the cost of the test, but I would assume that it will probably cost more - that's just a guess though, so I could certainly be wrong.
The test can be ordered separately, but since the test results have to be verified by an actual food testing program, most members find that it helps to work with a qualified dietitian, (who can order the test for you), and since they receive a discount on the cost of the test, that helps to reduce the fees charged by the dietitians, for their services. Mary Beth, can provide a list of dietitians in your state who are qualified, (certified), to work with the MRT/LEAP program. Like doctors, dietitians are licensed to practice within their state of residence.
It's still relatively early in your treatment program, so in a few more weeks or so, it's possible that you may be getting close to 100% better. At that point it will be easier to decide whether or not you might benefit from the MRT/LEAP program. Once you're able to actually reach a state of remission, of course, you can reduce your Entocort dosage, and if you remain in stable remission, then you can carefully test the foods that you're now avoiding, one at a time, to determine if you are actually sensitive to them.
Thanks for the update.
Tex
It's good to read that you're doing better. Yes, nearly all of us find that our treatment program can sometimes be frustrating, as we continue to have bad days mixed in with the good days, but as healing progresses, the bad days should slowly become fewer, and farther between, and the good days should become better, and more consistent.
You're correct - the Enterolab tests detect IgA antibodies, whereas the MRT uses a different technique, so theoretically, at least, it should provide some useful information even in the presence of selective IgA deficiency. The "improved" MRT offering will supposedly include testing for additional foods, so a decision on whether or not to wait for it would depend on how important the added items might seem to you. The existing test already covers a lot of foods and chemicals. I'm not sure what the new changes will do to the cost of the test, but I would assume that it will probably cost more - that's just a guess though, so I could certainly be wrong.
The test can be ordered separately, but since the test results have to be verified by an actual food testing program, most members find that it helps to work with a qualified dietitian, (who can order the test for you), and since they receive a discount on the cost of the test, that helps to reduce the fees charged by the dietitians, for their services. Mary Beth, can provide a list of dietitians in your state who are qualified, (certified), to work with the MRT/LEAP program. Like doctors, dietitians are licensed to practice within their state of residence.
It's still relatively early in your treatment program, so in a few more weeks or so, it's possible that you may be getting close to 100% better. At that point it will be easier to decide whether or not you might benefit from the MRT/LEAP program. Once you're able to actually reach a state of remission, of course, you can reduce your Entocort dosage, and if you remain in stable remission, then you can carefully test the foods that you're now avoiding, one at a time, to determine if you are actually sensitive to them.
Thanks for the update.
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.
Lisa,
MRT is available now - no need to wait, especially if you are having many problems. If you PM me with your city and zip I will see if I can locate someone closeby that can help you get the test.
Mary Beth
MRT is available now - no need to wait, especially if you are having many problems. If you PM me with your city and zip I will see if I can locate someone closeby that can help you get the test.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Thanks Tex. 100% better! I can't even imagine. The thought of bringing the kids to school and not having to worry about where the bathrooms are seems like a dream. One other question - is IgA deficiency in and of itself something to worry about? Or does it just mean the Enterolab testing won't work for me.
Lisa
Lisa
That's a fairly common problem, (about 1 in 225 in the U. S.), and most people who have what is known as selective IgA deficiency usually have normal amounts of the other types of immunoglobulins, and they typically don't have any illness problems as a result. Of course, there are exceptions, and some people do develop various problems. People who have deficiencies of other types of immunoglobuins, as well, obviously run a more significant risk of developing problems, but that condition is pretty rare.
Tex
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.
The only dangerous thing about IgA deficiency that I've read about is possible problems if you receive a blood transfusion. I tested "normal" on G/D/S/E with Enterolab, although I definitely react to all of them, so it's possible I could be IgA deficient too. I'm considering being tested for the deficiency, and also maybe doing MRT/Leap. What exactly do the tests entail? Are they blood tests? Mary Beth gave me a couple of names of dietitians here in Michigan. Should I be referred by my primary care physician?
Pat C.
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"