Visit the Microscopic Colitis Foundation Website
My question
Have you heard of the Mediator Release Test (MRT)?
Would you refer me to get it so I can do it through Kaiser? The results seem to be pretty accurate, and if I can figure out what foods I am sensitive to it would really help me dealing with this on a daily basis.
His answer:
I had never heard of the MRT test before so I did some research. The Internet can be very useful but it can also be a dangerous and misleading source of information. This test is dubious to say the least. What I did come across was a web site designed to protect patients from useless and possibly harmful treatments. An interesting quote was:
Many dubious practitioners claim that food allergies may be responsible for virtually any symptom a person can have. In support of this claim—which is false—they administer various tests purported to identify offending foods. Claims of this type may seem credible because about 25% of people think they are allergic to foods. However, scientific studies have found that only about 6% of children and 1-2% of adults actually have a food allergy, and most people with food allergies are allergic to less than four foods [1].
I'm not saying you have to listen to me. I make recommendations based on my training and experience over 20 years, and you can chose to follow them or not. What I would strongly advise, however, is not trying to self-diagnose and treat yourself by going through the Internet. If you feel you have a food allergy, you can discuss with Dr. Steindel a possible referral to an allergist.
My answer to him:
I'm not trying to self diagnose. You did the diagnosing and I am grateful I know what is wrong with me.
I am trying to find out as much as I can about this problem so I can feel better and stop this diarrhea which is debilitating.
Having sensitivities to certain foods when one has MC seems to make sense. I know some foods are laxative, and others are binding.
I found that chewing gum to stimulate salivary glands helped the GERD a lot, but caused increased mucous-y diarrhea. I looked on the internet, and found that lots of people had the same reaction because of the sorbitol. So, no more sorbitol or any sugar alcohol.
I thought there might be other connections. That's all.
BTW, I ordered the meds and will let you know when they arrive. I hope they help!
Gawd! I wish I had a good doc here. Mine are all the same.
GEEZ! Why did I ever think...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Lesley,
First of all, your doc is talking about food allergies, which are very different from the food sensitivities that MCers have. They involve a completely different mechanism of action in the body and are in no way the same thing. Food allergies are immediate, can be life-threatening, and can cause hives, respiratory distress, etc. Food sensitivities occur more slowly and are associated with bloating, D, aches/pains, etc. So he may be right about some of his comments about food allergies.
MRT does not test for food allergies - it tests for food sensitivities. As a physician, I can tell you the MRT is NOT a dubious test. It is based upon science, and for me at least, it worked. It has allowed me to fine tune my diet to the point where I have completely normal bowel function.
You can always proceed with the test on your own, if you want to pay out-of-pocket. A physician is not needed - you work primarily with a nutritionist. You will need to find someone to draw the blood sample - some labs will do this.
Good luck!
Hugs,
Polly
First of all, your doc is talking about food allergies, which are very different from the food sensitivities that MCers have. They involve a completely different mechanism of action in the body and are in no way the same thing. Food allergies are immediate, can be life-threatening, and can cause hives, respiratory distress, etc. Food sensitivities occur more slowly and are associated with bloating, D, aches/pains, etc. So he may be right about some of his comments about food allergies.
MRT does not test for food allergies - it tests for food sensitivities. As a physician, I can tell you the MRT is NOT a dubious test. It is based upon science, and for me at least, it worked. It has allowed me to fine tune my diet to the point where I have completely normal bowel function.
You can always proceed with the test on your own, if you want to pay out-of-pocket. A physician is not needed - you work primarily with a nutritionist. You will need to find someone to draw the blood sample - some labs will do this.
Good luck!
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
Glad you answered. And thanks. I KNOW he's talking about allergies, and the difference between allergies and sensitivities. He doesn't seem to.
Do you mind if I send your answer to him?
I really want him to see that this is NOT BS, and to open his head to something else.
I will do the MRT when I can, once I have the inflammation under control, when my meds come.
Glad you answered. And thanks. I KNOW he's talking about allergies, and the difference between allergies and sensitivities. He doesn't seem to.
Do you mind if I send your answer to him?
I really want him to see that this is NOT BS, and to open his head to something else.
I will do the MRT when I can, once I have the inflammation under control, when my meds come.
-
karenswans
- Adélie Penguin
- Posts: 104
- Joined: Sat Sep 03, 2011 7:12 am
I'm sorry you're going through this, Lesley, but maybe you're causing yourself unnecessary frustration by trying to convince him. In the end, it doesn't matter what he believes. You may be better off if you let it go and focus on healing rather than changing his mind. He doesn't sound like someone who is open to new ideas at all.
Just my 2 cents.
-Karen
Just my 2 cents.
-Karen
Karen,
So far he isn't, but I want to do the MRT tests. After doing the enterolab ones paying for the MRT is expensive. I have Medicare. They don't provide these tests. If they don't they are supposed to pay for the tests out of network, so I want him to at least consider it. Maybe. If he will.
The help I am getting from you guys is worth GOLD + DIAMONDS, but I need him for certain things. And referring me is one of them.
So far he isn't, but I want to do the MRT tests. After doing the enterolab ones paying for the MRT is expensive. I have Medicare. They don't provide these tests. If they don't they are supposed to pay for the tests out of network, so I want him to at least consider it. Maybe. If he will.
The help I am getting from you guys is worth GOLD + DIAMONDS, but I need him for certain things. And referring me is one of them.
Lesley,
IMO, his answer was not surprising - that's the same conclusion that I reached, the first time that I checked out their website. I searched and searched, and could find absolutely nothing that showed the technical details of how their process worked, nor even a logical explanation of why it worked. To someone with a scientific background, their explanation pretty much amounts to "smoke and mirrors", and when the science behind it is invisible, that's usually a tip-off that the concept is nothing but fake science.
Of course, "the proof is in the pudding", and experience shows the process does seem to work. So, IMO, the problem is that they actually don't know how or why it works - it just does. They can only explain it in vague terms, so that makes the science appear shaky. No one can explain what they don't understand, and that's why there's no valid explanation on their website, as far as I can tell.
Actually, that's not at all unusual in the medical/pharmaceutical world. No one knows how prednisone or Entocort works, either - all we know is that it does work to suppress certain inflammatory issues. How it works is anybody's guess.
At least that's how I see it.
Tex
IMO, his answer was not surprising - that's the same conclusion that I reached, the first time that I checked out their website. I searched and searched, and could find absolutely nothing that showed the technical details of how their process worked, nor even a logical explanation of why it worked. To someone with a scientific background, their explanation pretty much amounts to "smoke and mirrors", and when the science behind it is invisible, that's usually a tip-off that the concept is nothing but fake science.
Of course, "the proof is in the pudding", and experience shows the process does seem to work. So, IMO, the problem is that they actually don't know how or why it works - it just does. They can only explain it in vague terms, so that makes the science appear shaky. No one can explain what they don't understand, and that's why there's no valid explanation on their website, as far as I can tell.
Actually, that's not at all unusual in the medical/pharmaceutical world. No one knows how prednisone or Entocort works, either - all we know is that it does work to suppress certain inflammatory issues. How it works is anybody's guess.
At least that's how I see it.
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.
We also don't know who is going to have horrible side effects, and who can wean off it more easily. So many things are not explicable. I don't know why a doctor wouldn't understand that we are learning new things daily.
Polly says there is science behind it that she believes in. I would love to be able to understand it too.
Polly says there is science behind it that she believes in. I would love to be able to understand it too.
Lesley, this is an excellent point. I keep reminding my doc that my father died from a reaction to a statin drug. In my mind, that gives me good reason to suppose that I might be at increased risk of Some Adverse Thing happening - if I were inclined to take 'em anyway. We sure don't know - I might thrive on them - but I get to ask the question, and point out that she cannot answer it.Lesley wrote:We also don't know who is going to have horrible side effects, and who can wean off it more easily. So many things are not explicable.
Also, when someone has unusual side effects, most doctors will say it's not likely to be from the drug - even when the patient is clear that stopping the drug = side effects stop; restarting = side effects again. It reminds me of that Chico Marx quote "Who are you going to believe - me, or your own eyes?" Some doctors expect us to answer, why - you, of course, o wise one! (And some people do.)
Some Adverse Thing happening - Really sorry Sara. That must have really hurt.
I wish my docs would believe ME!!
I don't have someone like your father to refer to. I just have ME and MY reactions. But if it isn't written in 10 articles and in all the journals (1 or 2 are not enough, and nor is it enough if it's just ME who draws attention to it, and not a "colleague") it doesn't have any validity. Not even if it is happening to ME in front of his or her eyes.
For example - I feel horrible today, (pain everywhere) and I have a pronounced malar rash. My lupus tests are always ANA negative. Therefore I don't have lupus. Or anything else of that type.
Look at ME you idiot. See what's happening? Must I believe you or will you look up and AT ME with your own eyes, and not at the stinking test results.
I cannot tell you how often over the years I was told it was in my head. Told that "everyone gets tired. Everyone hurts". Sent to a psychologist. Made to feel inadequate, small and unable. I have to be hospitalized, operated on (at 19, told it was spastic bowel and "nothing") or have non stop diarrhea to warrant a glance.
Sorry, really bad mood today. Not your fault. Just blew up.
I wish my docs would believe ME!!
I don't have someone like your father to refer to. I just have ME and MY reactions. But if it isn't written in 10 articles and in all the journals (1 or 2 are not enough, and nor is it enough if it's just ME who draws attention to it, and not a "colleague") it doesn't have any validity. Not even if it is happening to ME in front of his or her eyes.
For example - I feel horrible today, (pain everywhere) and I have a pronounced malar rash. My lupus tests are always ANA negative. Therefore I don't have lupus. Or anything else of that type.
Look at ME you idiot. See what's happening? Must I believe you or will you look up and AT ME with your own eyes, and not at the stinking test results.
I cannot tell you how often over the years I was told it was in my head. Told that "everyone gets tired. Everyone hurts". Sent to a psychologist. Made to feel inadequate, small and unable. I have to be hospitalized, operated on (at 19, told it was spastic bowel and "nothing") or have non stop diarrhea to warrant a glance.
Sorry, really bad mood today. Not your fault. Just blew up.
Lesley,
I am right there with you, and I'm sorry it's a rough day. Hopefully your lupus symptoms will respond along with your other efforts to get the autoimmune and inflammatory responses in your body dampened down. I realize that doesn't make today any easier.
FWIW - I think you're still giving your docs too much credit for reading journals and staying abreast. And of course... there's http://retractionwatch.wordpress.com/ to make sure we can't feel good about what they're reading... even if they are paying attention to the journals.
I know you're right - we need our doctors (for referrals, or prescriptions - at least until, as my husband says, I start doing my own blood draws and testing them in my own lab).
AND - the good ones are golden. Even the good moments in a doctor who's otherwise not perfect - can be very, very helpful. Sadly, it's harder to work well with an all-too-human doctor when you're feeling awful.
My doc didn't want to run tests for ANA or other autoimmune markers - so as not to go looking for trouble, essentially. I was looking for reassurance, and hoping we could take a baseline now, and watch any possible AI threat diminish over time, if diet is working. To avoid alarm, she thought allaying my concern was unimportant. I wasn't alarmed, but would love to know for sure that I need not be...
Truly wishing you a better tomorrow, and maybe a better doctor,
Sara
I am right there with you, and I'm sorry it's a rough day. Hopefully your lupus symptoms will respond along with your other efforts to get the autoimmune and inflammatory responses in your body dampened down. I realize that doesn't make today any easier.
FWIW - I think you're still giving your docs too much credit for reading journals and staying abreast. And of course... there's http://retractionwatch.wordpress.com/ to make sure we can't feel good about what they're reading... even if they are paying attention to the journals.
I know you're right - we need our doctors (for referrals, or prescriptions - at least until, as my husband says, I start doing my own blood draws and testing them in my own lab).
AND - the good ones are golden. Even the good moments in a doctor who's otherwise not perfect - can be very, very helpful. Sadly, it's harder to work well with an all-too-human doctor when you're feeling awful.
My doc didn't want to run tests for ANA or other autoimmune markers - so as not to go looking for trouble, essentially. I was looking for reassurance, and hoping we could take a baseline now, and watch any possible AI threat diminish over time, if diet is working. To avoid alarm, she thought allaying my concern was unimportant. I wasn't alarmed, but would love to know for sure that I need not be...
Truly wishing you a better tomorrow, and maybe a better doctor,
Sara
Sara,
I know you understand. And I honestly don't think it's important for you to have autoimmune testing to be reassured. Believe me, you'd know if you had anything like that, no matter what the tests say. When I was diagnosed (or sort of) I had almost died. Same thing as I had in July, except I didn't go to the hospital for 2 weeks. This time my son schlepped me after 2 days, so it was much, much quicker. Still, the tests were weird. Tex saw them. Very hard to know what it was. They said bladder infection, but it wasn't. I have those all the time. That was auto immune, and I had a lovely malar going, but the rheumatologist wouldn't look at ME, he believed his lying eyes.
Is it lupus? Who knows, but it is auto immune and it's THERE!
So, you'd know.
You are managing your MC with diet alone, and are doing well, and are happy. What else do you need to know?
My internist is a sweetie, but she seems to be afraid of her own shadow when it comes to expressing an opinion about anything she thinks is not her purview. It would be nice if SHE would argue for me a bit, and help me get what I need. *sigh*
I know you understand. And I honestly don't think it's important for you to have autoimmune testing to be reassured. Believe me, you'd know if you had anything like that, no matter what the tests say. When I was diagnosed (or sort of) I had almost died. Same thing as I had in July, except I didn't go to the hospital for 2 weeks. This time my son schlepped me after 2 days, so it was much, much quicker. Still, the tests were weird. Tex saw them. Very hard to know what it was. They said bladder infection, but it wasn't. I have those all the time. That was auto immune, and I had a lovely malar going, but the rheumatologist wouldn't look at ME, he believed his lying eyes.
Is it lupus? Who knows, but it is auto immune and it's THERE!
So, you'd know.
You are managing your MC with diet alone, and are doing well, and are happy. What else do you need to know?
My internist is a sweetie, but she seems to be afraid of her own shadow when it comes to expressing an opinion about anything she thinks is not her purview. It would be nice if SHE would argue for me a bit, and help me get what I need. *sigh*