Gloria's MRT Experiences

Discussions can be posted here about mediator release testing (MRT), as offered by Oxford Biological Technologies, in conjunction with the LEAP program, which is claimed to determine a relative level of sensitivity to various foods and chemicals by measuring an increase in the ratio of liquids to solids in a blood sample that has been exposed to a specific allergen.

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Gloria
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Gloria's MRT Experiences

Post by Gloria »

I asked Mary Beth if she could help find a dietitian who could arrange for MRT testing. She gave me the name of a dietitian near my home and I had the testing done. I was surprised at how easy it was to arrange for the blood work, and it only cost $10 for it to be drawn. The test must be done using a provider; my dietitian charged $650 for her services and the testing. I received the results in 2 days, on March 31.

I was almost as surprised to see my MRT results as I was to see the Enterolab results. The most comprehensive test covers 150 different foods and chemicals. They categorize the results in bar graph form as: non-reactive (green, or safe), moderately reactive (yellow), and reactive (red).

My reactive foods were: goat’s milk, grapefruit, CRANBERRY, cucumber, codfish, CHICKEN, and green peas.

My moderately reactive foods were: four different food dyes, cottage cheese, CINNAMON, VANILLA, OREGANO, cherry, pear, cantaloupe, WHITE POTATO, beet, eggplant, oat, TUNA, scallop, tilapia, egg, BEEF, peanut, lima bean, and pecans. I ate the foods in caps regularly, but had recently been suspicious about beef and potatoes.

I was surprised that some fruits, dairy and legumes tested as non-reactive, but Mary Beth explained that the test doesn’t test for fructose malabsorption and all lectin responses. I feel that the test is a complement to Enterolab testing, but not a replacement for it.

The dietitian helped me set up a rotation diet where I rotate eating non-reactive foods every three days. I still use this rotation as a tool to keep from developing more intolerances. She encouraged me to include my low-reactive fish, vegetables, and grains. I told her I wouldn’t try fruits, legumes or dairy, even though the MRT testing showed them to be non-reactive. She agreed with me.

I began having trouble the day I started eating the new foods. By the sixth day on the rotation diet, I knew I was reacting to some of the foods and I was even more frustrated. I was eating corn polenta, creamed amaranth, and creamed buckwheat for breakfast. Lunch was turkey, crab meat, and salmon with asparagus, tomatoes, squash and mushrooms and dinner was similar to lunch. The dietitian encouraged me to stay with the diet, but I knew I wasn’t getting better. Once my weight began dropping suddenly (some days I was only eating 750-900 calories), she told me that I needed to get more calories and recommended that I start eating similar to the way I ate before I began the diet. I reviewed what the MRT testing said about their results and I quote it here:

Quote:
“Degrees of reactivity may not in all cases correlate with presence or level of clinical sensitivity to the food. Strongly positive results have been found to correlate with food reactivity. It is appropriate to eliminate foods with Reactive Scores. Moderately reactive scores should be evaluated by the physician or dietitian based upon patient history and frequency of consumption. After an appropriate period of elimination, reintroduce them one at a time under physician and/or dietitian supervision. If negative foods have been consumed regularly before drawing the blood for the test, there is high probability that they are ‘safe’ and are not likely to provoke symptoms. If test positive foods are eliminated from the diet, these non-reactive foods could reasonably remain in the permitted diet during the elimination phase. The clinician or dietitian should remain alert to the possibility that any of these foods might provoke symptoms.
Red text emphasis is mine.

I told the dietitian that, according to the LEAP program (administrators of the test), one can’t assume that non-reactive foods are safe, yet that was what she was instructing me to eat. She pretty much left me on my own after that. Mary Beth didn't abandon me and I'll be forever grateful to her. She was non-judgmental and sympathetic, which I greatly appreciated. She mentioned that she thought I had a mast cell problem and gave me a link to a website describing the high-histamine foods. When I looked at the list, I realized that I had reactions to most of the foods on the list. Not only that, but it appeared that my mouth sores were also a symptom of a mast cell problem. I eliminated almost all of the foods on the list from my diet. Fish is a high-histamine food and was likely a big contributor to my getting worse on the LEAP diet.

My opinion of the MRT testing: the test results needs to be viewed in the same light as Enterolab results. Enterolab test results are highly reliable in revealing which foods are not safe. The MRT test results are also highly reliable in revealing which foods are not safe. My mistake (and the dietitian’s) was to assume that the non-reactive foods were safe. They may or may not be. They should be tested before they are assumed safe. I recall that Mary Beth had a more positive experience with the non-reactive foods than I did.

I continued to eat some vegetables that tested OK on the MRT testing: mushrooms, tomatoes, yellow squash, asparagus, zucchini, cauliflower, and broccoli. I also ate some vegetables that weren’t covered in the test, such as turnips, parsnips and kohlrabi. I reacted badly to all vegetables except asparagus, cauliflower and Brussels sprouts. I was in my fifth week on the diet, still taking 3 Entocort pills a day, and was still not seeing Norman. It was a pretty discouraging time. I felt like I was at the end of the trail and had tried everything. The next week, I had Norman two days in a row. I had hope again! I got a mouth sore that Saturday and realized I hadn’t eaten any tomatoes all week until Saturday. Tomatoes had to go. In June, my visits from Norman stopped again.

My next breakthrough came when I decided I needed to test chocolate. I was estatic when the MRT test results listed it as a non-reactive food. By the middle of June, I was still not seeing Norman, and chocolate was on the high-histamine food list. This was (and is) the hardest food for me to give up. Within two days, Norman returned. There was no denying the obvious. I had given chocolate up other times, but was still eating other reactive foods, so I never noticed a difference.

My diet became extremely limited. Acceptable meats were turkey, pork and lamb. Vegetables were asparagus, cauliflower and Brussels sprouts. Grains/starches were quinoa, amaranth, rice, corn and arrowroot. I was eating no snacks, fruits, starchy vegetables or fish. These are the only foods I eat now, with the addition of avocado, almond milk, cane sugar, maple syrup and occasional nut butter. I’m also testing coconut.

My weight had dropped to 93 by July, so I decided to test tapioca so that I could rotate puddings for the calories. I began rotating muffins for the same reason. It’s difficult to rotate grains and starches, and I needed a third starch. All grains except oats tested OK on the MRT test, including tapioca. I tested tapioca pudding and it seemed OK, so I began eating and using tapioca. I was having flat, solid BMs for a few weeks and feeling that I was finally getting better. I reduced one Entocort pill every one, then two days, and took three pills on the third day. I suddenly started getting itchy head and neck bumps. I was eating rice nearly every day and attributed the sores to rice. I stopped eating rice and tapioca and the bumps went away. One day I tested rice and they returned, so I gave up rice altogether. Rice was a mainstay in my diet and I couldn’t do without the calories. I replaced rice with millet and buckwheat. I also replaced rice milk with almond milk. Norman disappeared and once again, I became discouraged.

I gave up tapioca completely – it is an ingredient in Ener-g egg replacer – and tested rice again. I was still having problems, so I looked again at my food diary and did a shotgun elimination: millet, arrowroot, corn, sugar, almond milk, buckwheat, quinoa, and amaranth. I reintroduced the eliminated foods one at a time. My weight dropped to 91.5 lbs. and my body fat was 11%. I had lost 33 lbs. since I was Dx’d. It was now September 1.

I began having improved BMs by September 7 and began testing the foods I gave up. I realized right away that buckwheat was a problem and have eliminated it entirely. My food diary revealed that I began having problems after eating millet, so I eliminated it entirely. Both foods were listed as non-reactive (safe) on the MRT testing. I was able to reintroduce arrowroot, corn, sugar and almond milk without problems. Since then, I've been having Normans regularly.

Gloria
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Joefnh
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Post by Joefnh »

Interesting write up Gloria, thanks for posting this

I guess as an overall question how much has the MRT testing helped you... it seems that you have fallen back to the tried and true method of and elimination diet and that it did a better job than the MRT testing. Is that a reasonable statementtot make?

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Gloria
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Post by Gloria »

I guess what I'm trying to underscore is that the MRT testing is another tool to help us find additional intolerances, but it's not a tool to tell us which foods are OK. I see that happening amongst some members already, and it concerns me.

I must stress that my case is unique because I seem to have numerous intolerances; most here do not.

Thus far my stages of treatment have been:
  • Eliminate gluten per this website recommendation
    Eliminate soy, casein, eggs, yeast per Enterolab test results
    Eliminate numerous other foods through trial and error
    Eliminate additional foods based upon MRT testing
    Eliminate additional foods through trial and error
I had hoped the MRT test results would be the definitive answer for me, but they weren't. It informed me about more intolerances, but it didn't mean I could end the trial and error.
Mary Beth wrote:Still trial and error but with a more guided approach. All foods still need to be challenged and the only way to do that is to eat them and check response.
I agree with Mary Beth's statement.

Gloria
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tex
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Post by tex »

Excellent post, Gloria,

Many thanks for sharing your experiences and your insight, and congratulations on your dedication and your abilities to sort out all the details that absolutely have to be sorted, if remission is to be attained, in such difficult cases.

I'd like to point out one big difference between the way that doctors tend to use such tests, and the way that you, (and Mary Beth, and presumably, other members here), use them. Instead of accepting/treating the test results as gospel, and pretending to be gobsmacked when you found out that they were not, you used them as tools, and stepping stones, to systematically resolve your issues, one at a time. Many, (though certainly not all), doctors tend to view tests of this type, (IOW, tests which yield "mixed" results), as either totally correct, or worthless. They are rarely willing to devote the time and effort necessary, to use them the way that you did - they simply don't have the patience, and they feel that they can't spare the time required to see it through.

Great work!

Tex
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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.
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Post by Pat »

Tex,

I wish those doctors could walk in our shoes for one day. They might achieve a lot of patience and understanding.

Pat
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Post by tex »

Pat,

Ain't that the truth. :lol:

Tex
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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.
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TooManyHats
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Post by TooManyHats »

Pat wrote:Tex,

I wish those doctors could walk in our shoes for one day. They might achieve a lot of patience and understanding.

Pat
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I totally agree with you Pat!!
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Post by mbeezie »

I wish we had a "Like" button similar to the one on Facebook!!
I second that . . . I've thought that a million times!!

Mary Beth
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Post by Polly »

Gloria,

Thanks for taking the time to post your experience. I will do the same when I have had more experience with MRT - I am only on day 5 of phase I. I hope things are going well now, despite the pneumonia.

Love,

Polly
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