Hi Tex,
I meant to tell you that I emailed the nutritionist to ask her why I did not show sensitivity to Barley. Her answer back to me was that MRT does not test for the gluten in the grain, which is probably why she, herself, just got tested at Enterolab? I also looked in their FAQ's, and here is a quote from them:
"Q. I know that I am allergic to a particular food but MRT said I wasn't. Why?
A. MRT identifies foods and food substances involved in food sensitivities, and is the most comprehensive blood test for these types of reactions. If you know that you are allergic to a particular food, it most likely won't show up on MRT because mast cells, the main cells involved in allergic reactions are found in tissue, not in the circulation. MRT measures the circulating cells, which tend to be involved in sensitivities."
I have to admit ignorance - don't really understand the science behind all of this, but they claim to have the highest level of accuracy of any food sensitivity blood test (more than 90%). Fortunately, so far, it seems to be working for me.
Thanks again for all the time and effort you put into keeping this forum up and running, as well as for generously sharing your wealth of knowledge. You've created a wonderful "home" for us Potty People, and I feel personally indebted to you for your kind assistance and cheer leading on my journey.
Love,
Kari
Kari's Good News - MRT Results
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Kari,
As many people as there are, who have received helpful results from the MRT testing, and as many people as there are who support the test, and who have earned my trust, (including Dr. Lewey, our own Mary Beth, etc.), there has to be some validity to the tests. However, the more I attempt to pursue a scientific explanation for why the procedure works, the more I see it as a vague and "mysterious" process of smoke and mirrors, that somehow miraculously produces results that seem plausible to most people.
The problem is that the process is based on the ratios of solids to serum, as a result of changes made to the blood by "chemical mediators", in response to a reaction to that particular food. What bothers me is the fact that no one ever names a single one of those mysterious "chemical mediators" that perform the magic by which the test performs. Even Dr. Lewey simply repeats that same song and dance that is always quoted as the logic behind the testing - he isn't able to name a single one of those "chemical mediators" that are at the the heart of the testing mechanism, so obviously he doesn't understand how it works, either.
Call me a skeptic, but when no one can present any facts to support a process, I get suspicious, and the old "The Emperor Has No Clothes" concept comes to mind.
For example, the quote that you mentioned from their FAQs contained this "explanation":
That said, there are a lot of things about medicine that are not understood, (such as the mechanism by which corticosteroids suppress inflammation), so really, this is just one more in a long line of medical mysteries. It's not how it works that matters, so much as if it works, and how well it works. I hope that it enables you to nail down a stable condition of long-term remission.
Love,
Tex
As many people as there are, who have received helpful results from the MRT testing, and as many people as there are who support the test, and who have earned my trust, (including Dr. Lewey, our own Mary Beth, etc.), there has to be some validity to the tests. However, the more I attempt to pursue a scientific explanation for why the procedure works, the more I see it as a vague and "mysterious" process of smoke and mirrors, that somehow miraculously produces results that seem plausible to most people.
The problem is that the process is based on the ratios of solids to serum, as a result of changes made to the blood by "chemical mediators", in response to a reaction to that particular food. What bothers me is the fact that no one ever names a single one of those mysterious "chemical mediators" that perform the magic by which the test performs. Even Dr. Lewey simply repeats that same song and dance that is always quoted as the logic behind the testing - he isn't able to name a single one of those "chemical mediators" that are at the the heart of the testing mechanism, so obviously he doesn't understand how it works, either.
Call me a skeptic, but when no one can present any facts to support a process, I get suspicious, and the old "The Emperor Has No Clothes" concept comes to mind.For example, the quote that you mentioned from their FAQs contained this "explanation":
Again, forgive me for being a skeptic, but that explanation is not satisfactory. Actually, mast cells do circulate in the blood, though not necessarily as a result of an allergic reaction. Their "explanation" simply states that MRT testing does not detect classic allergies, (which are histamine-based reactions). Instead, the test supposedly detects ratios of circulating cells, (presumably white cells of various types) "which tend to be involved in sensitivities", against serum volume. Well, most celiacs are not allergic to barley, but they are indeed sensitive to the prolamin protein in barley, (and so are you), so therefore the test should show barley as reactive, if the test is accurate. The fact that the test does not test for "gluten" is irrelevant to the issue. The fact of the matter is, if the test performs as claimed, then it should show barley as a reactive food. I'm not saying that the test is worthless, I'm just saying that like all tests, it is far less than perfect, and when it misses a major reactor, such as barley, that raises a huge question mark about the glowing claims made about it.If you know that you are allergic to a particular food, it most likely won't show up on MRT because mast cells, the main cells involved in allergic reactions are found in tissue, not in the circulation. MRT measures the circulating cells, which tend to be involved in sensitivities."
That said, there are a lot of things about medicine that are not understood, (such as the mechanism by which corticosteroids suppress inflammation), so really, this is just one more in a long line of medical mysteries. It's not how it works that matters, so much as if it works, and how well it works. I hope that it enables you to nail down a stable condition of long-term remission.
Love,
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.
for you.Tex - this is such a puzzle. Wish I could speak with more authority on this topic. Anyhow, is the main protein in Barley separate from the gluten (which I thought was also a protein?) in Barley? If so, isn't it then a possibility that I'm not reactive to the main Barley protein? That's pretty much what the nutritionist said - "they test for your reactivity to the protein in the Barley, not the gluten". Anyhow, as "mysterious" as the process is, I'm sure happy it seems to work:).
Joe - hope you're able to do the testing, as I believe it's very valuable. I'm now starting to get over the caffeine (and banana :)) withdrawal symptoms, and really think that those two were major roadblocks in my healing. Good luck to you, and thank you for your wishes.
Gloria - thank you for your support - hope you're continuing on the solid (pun intended) track you seem to be on:).
Love,
Kari
Joe - hope you're able to do the testing, as I believe it's very valuable. I'm now starting to get over the caffeine (and banana :)) withdrawal symptoms, and really think that those two were major roadblocks in my healing. Good luck to you, and thank you for your wishes.
Gloria - thank you for your support - hope you're continuing on the solid (pun intended) track you seem to be on:).
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari,
For background information, in general, we are sensitive to the primary storage protein, (prolamin), in all grains closely related to wheat, (the Triticeae tribe). The term "gluten" is a generic term for the prolamin proteins in all grains, but very confusingly, it is also the specific name for the prolamin in wheat, to which we react. The corresponding "glutens", (or prolamins), in the other grains are: hordein, (in barley), secalin, (in rye), avenin, (in oats), zein, (in corn), and orzenin, (in rice). Soy is not a grain, of course, but the corresponding "gluten" in it is known as soya.
We are not sensitive to gluten itself, but rather to specific amino acid sequences in the overall amino acid chain that defines gluten. These amino acid sequences are called peptides, and they turn up as an intermediate phase during the process of digestion, because gluten is not water soluble, and we have no way to chemically break down these peptides, into their individual amino acids, so that they can be absorbed and utilized by our system. "Normal" people don't react to these peptides, so they just pass harmlessly through their digestive system. If we are gluten-sensitive, though, our immune system reacts to them. With wheat gluten, for example, the major offender is the alpha gliadin fraction, (or peptide), and this is the one that Enterolab tests for, but most of us are also sensitive, (usually to a lesser degree), to the beta, gamma, delta, etc., gliadin fractions, as well. Gluten also contains various glutenins to which we are sensitive, (also, to varying degrees), but to my knowledge, no one has a test that specifically selects for sensitivity to them. The point is, though, most nutritionists probably don't get far enough into the chemical analysis of these proteins to understand the individual roles that the many protein fractions play in the overall process. In all, there are close to a hundred peptides to which we can react, (to varying degrees of severity), in the Triticeae tribe alone, (which includes wheat, barley, rye, spelt, etc.
The problem with her explanation, is that there's nothing unique about testing for "reactivity" to a prolamin protein, rather than testing for the protein itself - in fact, that's exactly how the Entoerolab tests work. The anti-gliadin, (gluten), test, for example, tests for anti-gliadin antibodies, which are the result of the body's reaction to the alpha gliadin peptide, (protein fraction), in gluten. IOW, they don't test for gluten, either - they test for the body's reaction to gluten. Enterolab, of course, does not have a test to specially detect antibodies to hordein, (the prolamin protein in barley), because these tests are extremely specific, and anyone who is sensitive to the alpha gliadin peptide, is almost always sensitive to hordein, (in barley), and secalin, (in rye), as well, so additional testing for those peptides would generally be an unnecessary expense. Apparently, though, the MRT testing does not reliably detect reactivity to hordein, either.
While it's certainly possible that you actually might not be sensitive to one or more of the peptides in hordein to which most celiacs react, it's extremely unlikely. If what the test shows, (and what she says), is correct, though, then you should be able to eat any of the many breakfast cereals that are otherwise gluten-free, but contain barley malt, (which would cause most of us to react). It would also mean that you should be able to safely drink any regular mainstream beer, which is brewed with barley malt. If you try beer, though, be aware that some specialty brews are made from malted wheat, rather than malted barley, and other grains can also be used, to achieve a unique flavor.
IMO, though, we should never look a gift horse in the mouth, so if it works, use it, and never look back. Only results matter - understanding the intricate details of how things work might be interesting, but it's usually unnecessary for accomplishing the job at hand.
Love,
Tex
For background information, in general, we are sensitive to the primary storage protein, (prolamin), in all grains closely related to wheat, (the Triticeae tribe). The term "gluten" is a generic term for the prolamin proteins in all grains, but very confusingly, it is also the specific name for the prolamin in wheat, to which we react. The corresponding "glutens", (or prolamins), in the other grains are: hordein, (in barley), secalin, (in rye), avenin, (in oats), zein, (in corn), and orzenin, (in rice). Soy is not a grain, of course, but the corresponding "gluten" in it is known as soya.
We are not sensitive to gluten itself, but rather to specific amino acid sequences in the overall amino acid chain that defines gluten. These amino acid sequences are called peptides, and they turn up as an intermediate phase during the process of digestion, because gluten is not water soluble, and we have no way to chemically break down these peptides, into their individual amino acids, so that they can be absorbed and utilized by our system. "Normal" people don't react to these peptides, so they just pass harmlessly through their digestive system. If we are gluten-sensitive, though, our immune system reacts to them. With wheat gluten, for example, the major offender is the alpha gliadin fraction, (or peptide), and this is the one that Enterolab tests for, but most of us are also sensitive, (usually to a lesser degree), to the beta, gamma, delta, etc., gliadin fractions, as well. Gluten also contains various glutenins to which we are sensitive, (also, to varying degrees), but to my knowledge, no one has a test that specifically selects for sensitivity to them. The point is, though, most nutritionists probably don't get far enough into the chemical analysis of these proteins to understand the individual roles that the many protein fractions play in the overall process. In all, there are close to a hundred peptides to which we can react, (to varying degrees of severity), in the Triticeae tribe alone, (which includes wheat, barley, rye, spelt, etc.
The problem with her explanation, is that there's nothing unique about testing for "reactivity" to a prolamin protein, rather than testing for the protein itself - in fact, that's exactly how the Entoerolab tests work. The anti-gliadin, (gluten), test, for example, tests for anti-gliadin antibodies, which are the result of the body's reaction to the alpha gliadin peptide, (protein fraction), in gluten. IOW, they don't test for gluten, either - they test for the body's reaction to gluten. Enterolab, of course, does not have a test to specially detect antibodies to hordein, (the prolamin protein in barley), because these tests are extremely specific, and anyone who is sensitive to the alpha gliadin peptide, is almost always sensitive to hordein, (in barley), and secalin, (in rye), as well, so additional testing for those peptides would generally be an unnecessary expense. Apparently, though, the MRT testing does not reliably detect reactivity to hordein, either.
While it's certainly possible that you actually might not be sensitive to one or more of the peptides in hordein to which most celiacs react, it's extremely unlikely. If what the test shows, (and what she says), is correct, though, then you should be able to eat any of the many breakfast cereals that are otherwise gluten-free, but contain barley malt, (which would cause most of us to react). It would also mean that you should be able to safely drink any regular mainstream beer, which is brewed with barley malt. If you try beer, though, be aware that some specialty brews are made from malted wheat, rather than malted barley, and other grains can also be used, to achieve a unique flavor.
IMO, though, we should never look a gift horse in the mouth, so if it works, use it, and never look back. Only results matter - understanding the intricate details of how things work might be interesting, but it's usually unnecessary for accomplishing the job at hand.
Love,
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.
-
Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Hi Kari;
I just now read your post about Norman's long awaited visit, and wanted to say....
WAHOOO
You sure deserve it with all that you have done to make this happen!
I totally understand about this being the best Christmas present
Love Linda
I just now read your post about Norman's long awaited visit, and wanted to say....
WAHOOO
. But, like Harma advised (thanks Harma), I kept my focus on the people and socializing, and off of the food to the best of my ability. It really does take a huge mind shift to learn how to have a good time without participating in the "food orgy" :):):).
Love,
Kari
Linda - your message really cheered me this morning - thanks !!!!! I was at a large christmas party last night (unavoidable) with lots of good food - including some gluten free items (for my son), but, alas, with other ingredients from my long list of sensitivities
. But, like Harma advised (thanks Harma), I kept my focus on the people and socializing, and off of the food to the best of my ability. It really does take a huge mind shift to learn how to have a good time without participating in the "food orgy" :):):).Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari,
It sounds like your progress is holding firm (pun intended
). It's a terrific feeling, isn't it? Few highs are higher than subduing this beast, and few lows are lower than it subduing us. I'm happy you are responding to the dietary changes you've made.
As for me, yes, I'm still doing well; no D, usually just one Norman a day. I've reduced to 6 mg. Entocort a day and will probably stay on that dosage another week or two before I try to reduce again. My weight is also up to 97 lbs.
Gloria
It sounds like your progress is holding firm (pun intended
). It's a terrific feeling, isn't it? Few highs are higher than subduing this beast, and few lows are lower than it subduing us. I'm happy you are responding to the dietary changes you've made.As for me, yes, I'm still doing well; no D, usually just one Norman a day. I've reduced to 6 mg. Entocort a day and will probably stay on that dosage another week or two before I try to reduce again. My weight is also up to 97 lbs.
Gloria
You never know what you can do until you have to do it.
-
Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Gloria - YEP, haven't felt happier in a long, long time . After 4 days of Normans, I'm still scratching my head, wondering if it can really be true, or if I'm somehow deluding myself. Like you, I will tread very carefully from here - certainly don't want to upset this applecart :). Anyhow, I'm so glad to hear that you're still doing very well and are actually gaining a bit of weight - YEAH, we're both winning the 
(at least for the time being :).
Tex - Just read in the MRT FAQ's that "Even the most accurate lab tests can give some false readings. The overall accuracy of MRT as determined in a peer reviewed blinded study is roughly 93%, leaving a small margin of potential error in the reading." I've strongly suspected that the Barley reading was somehow a "mistake", so now my mind is settling with the idea that it fell into this "false reading" category :).
Love,
Kari
. After 4 days of Normans, I'm still scratching my head, wondering if it can really be true, or if I'm somehow deluding myself. Like you, I will tread very carefully from here - certainly don't want to upset this applecart :). Anyhow, I'm so glad to hear that you're still doing very well and are actually gaining a bit of weight - YEAH, we're both winning the (at least for the time being :).Tex - Just read in the MRT FAQ's that "Even the most accurate lab tests can give some false readings. The overall accuracy of MRT as determined in a peer reviewed blinded study is roughly 93%, leaving a small margin of potential error in the reading." I've strongly suspected that the Barley reading was somehow a "mistake", so now my mind is settling with the idea that it fell into this "false reading" category :).
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Kari,
I just returned from my trip late last night and am just starting to read some posts. I am so happy to hear that MRT helped to identify some problematic foods. The test doesn't pick up certain reactions, like lectin sensitivity. The blood test is just a part of the LEAP program. The LEAP program is more effective than just looking at blood test results because you work with a dietitian to develop a personalized elimination diet, to test response to foods. From what I understand Diana is an expert in candida, so it sounds like you are in good hands.
Keeping my fingers crossed that Norman is here to stay.
Love,
Mary Beth
I just returned from my trip late last night and am just starting to read some posts. I am so happy to hear that MRT helped to identify some problematic foods. The test doesn't pick up certain reactions, like lectin sensitivity. The blood test is just a part of the LEAP program. The LEAP program is more effective than just looking at blood test results because you work with a dietitian to develop a personalized elimination diet, to test response to foods. From what I understand Diana is an expert in candida, so it sounds like you are in good hands.
Keeping my fingers crossed that Norman is here to stay.
Love,
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
Just dropping in to share in your terrific news, Kari! WAHOO!!!!
Love,
Polly
P.S. I have gone cold turkey in the past with coffee (caffeine). I get the weirdest symptom - miserable, aching hips that wake me up at night. Strange, huh? What about you?
Love,
Polly
P.S. I have gone cold turkey in the past with coffee (caffeine). I get the weirdest symptom - miserable, aching hips that wake me up at night. Strange, huh? What about you?
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Mary Beth - welcome back home - so glad to hear your trip was a success and you were not affected by the horrendous storm. Thanks for the heads up about Diana and candida. And, yes, I most definitely believe that working with her on instituting LEAP will be very helpful. I look forward to doing that after the holidays, and meanwhile I'm keeping to very few, supposedly, non-reactive foods.
Polly - that is a very unusual reaction indeed - my symptoms were more "standard fare" with low energy the first few days. The worst part was a persistent headache that came around day 5 and lasted for about 48 hours. I never get headaches, so that was a very strange and unpleasant experience for me. By now I'm feeling quite good, actually requiring less sleep, and feeling more energized - yeah!!!
Love,
Kari
Polly - that is a very unusual reaction indeed - my symptoms were more "standard fare" with low energy the first few days. The worst part was a persistent headache that came around day 5 and lasted for about 48 hours. I never get headaches, so that was a very strange and unpleasant experience for me. By now I'm feeling quite good, actually requiring less sleep, and feeling more energized - yeah!!!
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein