Hit a Speed Bump

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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rlw
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Hit a Speed Bump

Post by rlw »

It took me a little longer than I had hoped to become stable enough on my Phase 1 diet to begin adding new foods. My bowels are still not quite normal, but I’m down to one loose stool a day with no bloating or cramping. My dietitian thought it was safe for me to begin adding one new food a day 5 days ago. I did ok until this morning. I had D first thing this morning and I’m feeling worse today than I have in a very long time. Obviously something I added is a problem.

I know I need to eliminate everything I’ve added in the last three days. I’m just wondering how long it will take for things to calm down enough to try something new again. It is so hard to plan ahead and have new things on hand when I don’t know if I’ll be able to make progress.

I’m thinking one new food a day is a little too fast. If I have a reaction, three foods become suspect. Maybe one food every three days is a better idea. How quickly did you introduce Phase 2 and 3 foods?
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tex
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Post by tex »

rlw wrote:I’m thinking one new food a day is a little too fast. If I have a reaction, three foods become suspect. Maybe one food every three days is a better idea.
I'm not a dietitian, but I definitely agree with you. In addition, I personally don't believe that any new foods should be added until you are havingh normal BMs.

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 Gloria »

Hi rlw,

You are the best judge of what your body can handle. Your thinking is on the right track. One new food a day is too fast. It's better to wait until you're absolutely sure the new food is OK before you add another one.

I have found that once we're feeling better, we begin to think we've finally figured it all out and can begin adding new foods. Then it backfires and we have to go back to square one.

I have added new foods very slowly, but I'm not the average potty person.

Gloria
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rlw
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Post by rlw »

Thanks for the replies.

Before I started Phase 1, my dietician swapped some Phase 1 foods with Phase 2 foods to make things a little easier. I think I was overconfident with moving forward because the majority of the foods I added were originally Phase 1 foods – in fact 2 of the 3 foods under suspicion were originally in Phase 1. Both my dietician and the LEAP booklet advise adding one food a day, so I didn’t really think that would be a problem. Maybe that rate works for most LEAPers, but in the long run, I think the easiest way to get to Phase 5 is to progress at a much slower rate, one or two foods a week at most.

I am convinced that the reason my BMs were not normal before I started adding foods is that my Phase 1 diet is very high in fiber, consisting mostly of fresh fruits and vegetables and whole grains. My dietician believes that because all of my other symptoms had dissipated, the high fiber content was to blame for the loose stools. Of course, the fiber content won’t go down much as I add in new foods, but she also felt that adding some variety was important since eating the same thing over and over can eventually cause you to become reactive to it. For example, I eat cherries almost every day because the other fruits in my Phase 1 diet are avocado, which I really dislike, and pear, which I reacted to. Unfortunately, the one fruit I added is now under suspicion. I think I might retest pear, but remove the skin.
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tex
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Post by tex »

I agree with your thinking. Since most of the fiber in fruit is in the peel, peeling it should definitely help. One additional item to consider about fruit, is that most fruits are high in fructose, and many of us have problems if we ingest too much fructose. Also, some fruits contain a significant amount of sorbitol, and sorbitol tends to cause D for many of us, myself included, if I get very much of it.

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 Gloria »

I'm not sure you should be eating fresh fruit at all at this stage of your MC. Most of us have found that cooked fruit, such as applesauce, is the only fruit our gut can handle.

It sounds like your dietician is not too familiar with MC and how gently we need to approach our diet. I finally had to listen to what my body was telling me, not what my dietician was. Once I did, my symptoms improved. Many of my non-reactive foods (green) proved to be problematic for me, and I realized that I couldn't assume that they would be OK.

Use the ranking of your foods as a guideline, but not as the definitive answer to your food issues. Your body will tell you what is working and what is not.

Gloria
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Post by rlw »

Actually I have Mastocytic Enterocolitis, not MC. I don’t know if that makes any difference. I’ve had issues with fruit most of my life and never regularly consumed any fruit. Since the Phase 1 diet is so limited, I decided I should try to eat the allowed fruit. Maybe that’s a bad idea. In any case, I’m having some trouble getting back to where I was a week ago. I think I probably do need to go back to square one.

My dietician told me that she knows very little about mast issues. She sent me quite a bit of literature on foods with histamine, but stops short of making recommendations about eliminating anything based on that literature. Another issue I have is that I am reactive to tyramine, which brings into question several of my green foods. Again, my dietician stops short of recommending that I eliminate these foods. She told me that I would probably have to consume a lot of tyramine rich foods before it would have any issues with it. Furthermore, If I eliminate both histamine and tyramine foods, I will be left with only grains and vegetables in my Phase 1 diet. She didn’t think that was a good idea.

Since you were reactive to many of your green foods, how did you go about finding a starting point, where your BM’s were normal? If I can’t trust that I won’t react to any of my green foods, how can I know which of the limited foods I started with caused a reaction? I am keeping a food diary, but since I am eating so little variety, when I have a worsening of symptoms, every type of food I eat has been consumed within the last two days. How do I decide which to eliminate? How long do I need to wait after eliminating something before concluding that it wasn’t the problem? I feel like the only thing my body is telling me is that I made a mistake, and I can’t figure out what the mistake was.
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Post by Gloria »

I'm not sure if Mastocytic Enterocolitis is a subset of MC, but I would suspect it is. I believe that I have a mast cell issue. My GI wanted to do another colonoscopy to verify it, but I refused. I am intolerant of nearly all of the high-histamine foods, so I'm pretty sure I have it.

I already had the Enterolab testing prior to doing MRT testing, so I knew my first five intolerances. Like you, I looked at what was left after I eliminated the histamines, original five intolerances and the new MRT intolerances. My dietician wanted me to eat fish, since it was low-reactive on the MRT test. But fish is high in histamines, and I began to get worse. I reacted to most of the vegetables that were green, also. I already knew that fruits were out of the question, so I never tried any of them.

I finally made a list of the few foods that I felt were safe. If I could find 3 meats, 3 vegetables, and 3 flours, I would be able to configure a 3-day rotation diet. For meat: turkey was best (.9); lamb and pork (1.5) - high for phase I, but the only ones I felt were safe, so I added them. Next I looked at the vegetables. I settled on cauliflower (1.4), asparagus (1.1), and Brussel sprouts (not tested). Finally, I looked for three grains/seeds that I could eat. This took the longest time and I had to do a lot of experimenting. The meal plan I set up in my first few months is the same meal plan I'm presently eating, with a few minor changes and eliminations. You can see it here: http://www.perskyfarms.com/phpBB2/viewt ... 68&start=0

A food diary can be very helpful once you have some good and some bad days. I never used to pay much attention to my body's reactions, but I do now. I've discovered that if I get gurgling, gas and rumbling after eating something, I need to eliminate it. DH and I used to think it was the natural digestive process, but it isn't. I don't have those problems with safe foods.

Trying to determine food intolerances can be very frustrating, but little by little, you will make progress. Some here find dramatic results after eliminating a few key foods. That hasn't been my experience, and I think it has to do with the mast cell issue, combined with being a double DQ1. Hang in there; it does get better. I'm finally completely off Entocort. I'm still eliminating foods and having some issues, but they are manageable. If you're interested in my progress since the LEAP testing, you can read my "Weaning off Entocort" thread, located here: http://www.perskyfarms.com/phpBB2/viewt ... &start=255

Gloria
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rlw
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Post by rlw »

Thank you so much for the information. I’m thinking I should probably scrap my Phase 1 diet and start over with foods that have a higher probably of being safe. I’m going to need to go through my results and highlight those things that are either high histamine or high tyramine and see if I can come up with three meats. I’m fairly confident I can find three vegetables and three grains that should be safe.

I’ve seen several lists of high histamine foods and they are not consistent. For instance, I saw one list that said all nuts should be avoided and another list that didn’t have any nuts. Do you know where I could find a good comprehensive list?
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Gloria
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Post by Gloria »

I posed the same question to Arlene (TooManyHats), and she posted this link:

http://www.sswahs.nsw.gov.au/rpa/allerg ... Thesis.pdf

It's a thesis paper written by a doctoral student. It's an 8.56 Mb file, so give it time to load. There is a list starting on page 379 ranking amine foods as negligible, low, moderate, high and very high. She differentiates the amines of several nuts. As Arlene pointed out, she doesn't mention vinegar at all, so once again, use this as a guideline, not the final answer.

Gloria
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rlw
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Post by rlw »

I really appreciate your help! Unfortunately this page can no longer be found. Would you happen to have a copy?
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tex
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Post by tex »

Try this link:

http://www.sswahs.nsw.gov.au/rpa/allerg ... Thesis.pdf


Gloria,

The reason why your link didn't work, is probably because you copied it directly from Arlene's post, rather than from the original site. Normally, that would work, but when a link is too long, it causes the problem of having to scroll from side to side while reading posts). In order to avoid that inconvenience, a few years ago, I added some code that allows the system to automatically shorten long URLs, so that side-scrolling is never necessary.

The problem, of course, is that in the original post, the system knows where to find the actual long URL, in the database, but if the shortened URL is copied into a second post, the system has no way to reference the location of the original long URL in the database, so the browser php interpreter tries to interpret the shortened URL literally, and naturally it gets lost. Therefore, it's necessary to copy long URLs from the original site, when re-posting them.

Tex
:cowboy:

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.
rlw
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Post by rlw »

Got it - thanks, Tex!!
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