Time for MRT updates!

Polly · Post by **Polly** » Sun Feb 20, 2011 6:13 pm

Hi fellow MCers with multiple sensitivities and any others interested in MRT!

Shall we have updates on our progress?

Well, I have just finished my first full mo. on the MRT-LEAP diet - today was day 28. It has been quite interesting to say the least. First and most importantly, I feel terrific! Having regular formed BMs, once a day, and no aches, pains, fatigue. Can't remember the last time I consistently felt this well. It truly does make a difference when you eat only your least reactive foods!

I decided to go slowly and have been adding only one food a day now for the past month. As Gloria, Kari, and Mary Beth cautioned, it is worthwhile to test each of the green (safe) foods separately, since the test does not always pick up every sensitivity. Although avocado, garlic, and maple sugar tested safe for me on the blood test, I found that I reacted to them when I tested them individually. In addition to eating only my safest foods, I have completely avoided all legumes, grains, and dairy (even if my MRT test indicated I could safely eat them). I think I need to avoid all of the major lectin foods, including tomatoes, perhaps forever.

Initially the diet was hard - very restricitve. I found I had to make my own meals while my hubby made his - it was impossible to plan a varied, interesting diet we could both eat. The good things about the diet readily became apparent, however. I have been trying and enjoying foods that were not a part of my normal diet, like clams, buckwheat, eggplant, etc. I have been having fun being creative about making meals using only my safest foods.

Something I have noticed and wonder if anyone else has.....whenever I try a new fruit or veggie, I have a firm BM the next morning that becomes a puff-poopie (Dee coined this term for the BM that "puffs" when flushed). Usually it's just a little swirl/puff when flushed, but I never see any puff after trying a new meat or seafood. Do you think it's due to the fiber??? Honestly, the things we talk about here! LOL!

Anyway, just wanted to give my thumbs up for the MRT/LEAP program. It has been extremely beneficial so far for me as a genetic double DQ1 MCer with MANY sensiitivites. And, I am anxious to hear updates from others who have taken this route.

Love,

Polly

Gloria · Post by **Gloria** » Sun Feb 20, 2011 8:59 pm

Hi Polly,

It sounds like the MRT program is agreeing quite well with you. I'm pretty amazed that you are testing one new food a day.

I've been on the LEAP diet for 44 weeks. I'm still eating pretty much what I ate back in September when my gut finally settled down. I'm very nervous about trying new foods because I don't want to "rock the boat" and also because I'm still taking one Entocort pill a day. In addition, I had a lot of bad experiences testing new foods when I first began the diet.

I have tested and added the following foods to my diet over the past couple of months:

Ham
Coconut - green (1.9)
ginger - green
Vanilla - yellow (2.0)
Cinnamon - yellow (2.0)
mushrooms - green

I've tested the following foods and have mixed results or they are not OK as indicated:

banana - 1/4: OK, whole: not OK, 1/2: OK
broccoli - green: mixed results
potato - yellow (2.3): not OK
carrots - green: not OK
sweet potatoes - green: not OK
nut butters - green: mixed results

I haven't tried any other foods from my green foods list since I began the diet 10 months ago.

I have to agree with you that the "poof" seems to come from fiber. That's why I've hesitated to endorse broccoli. I could see the little florets on the toilet paper. The same thing with the hazelnut butter. I'm beginning to think that fiber is responsible for any degradation in my BM. It's what you described: firm, but with a rough edge that gives a little residue when flushed. I wouldn't describe it to anyone else but this board! That has just happened in the past two days and I'm waiting to see if it's due to the reduction in Entocort or to the fiber. I've stopped testing until I figure this out.

Polly wrote:I found I had to make my own meals while my hubby made his - it was impossible to plan a varied, interesting diet we could both eat.

We are still at that stage. I feel guilty because I promised DH that he would be on his own for two weeks when I did the elimination diet a year ago. It's been 44 weeks and we're still eating separate meals.

I hope I have a lot of this figured out by summer so that I know what to plant in my garden. I'm looking forward to starting seedlings pretty soon. Bring on spring!

Gloria

mbeezie · Post by **mbeezie** » Sun Feb 20, 2011 10:02 pm

I'm 18 months into my MRT and doing well. I occasionally get a puff poopie as well, but there doesn't seem to be any sort of problem or flare associated with it, so honestly I don't get too worked up about these. Fiber very well could be the cause.

MRT was accurate except for peanuts (green but I react - a lectin response I am sure). I have added back many yellows and can now eat a bit of lettuce (red) without trouble, but am really cautious with this. For me the issue is histamines/oxalates, which when I overdo these things I react. I still get nervous trying new things though, but I continue to do so. I can eat many foods not tested on MRT, like pomegranate, fennel and kale.

As I've said before, MRT was the turning point for me. Getting off of the reactive foods (a long list since I am a double DQ1 as well) made the difference. I agree with Polly, it's not always easy to stick with it in the early phases, but if you can get past that, then it gets much easier as you add more and more foods.

Mary Beth

JLH · Post by **JLH** » Mon Feb 21, 2011 9:39 am

Does Medicare cover MRT testing?

mbeezie · Post by **mbeezie** » Mon Feb 21, 2011 11:29 am

No Joan, it's not covered by Medicare.

Mary Beth

Gloria · Post by **Gloria** » Mon Feb 21, 2011 2:56 pm

Gloria wrote:I have to agree with you that the "poof" seems to come from fiber.....That has just happened in the past two days and I'm waiting to see if it's due to the reduction in Entocort or to the fiber. I've stopped testing until I figure this out.

I thought I'd mention that I'm back to a perfect Norman today, so it may be that the change was due to fiber. I've had so many relapses that I'm nervous about assuming that any change is temporary. I'm always worried I'm on a downward spiral. I will resume testing more foods, though at a slower pace than Polly and Mary Beth.

I'm glad Polly mentioned this. I have hope that I'm still on the path to remission.

Gloria

Polly · Post by **Polly** » Mon Feb 21, 2011 6:42 pm

Gloria,

I can't believe what a long and rocky journey you have had. And yet you continue to soldier on with determination.
Amazing.......Wish I had a magic wand to make it all better immediately for you.

How long are you waiting to add a new food? It was kind of tricky for me initially with the Leap diet, because I seemed to have a number of different reactions - from a brief sour stomach/burping for a few hours to full-blown gut gurgling/bloating to a mild headache all day to early morning aches/pains to a soft/urgent BM (or more) sometime within 24 hours. And of course, sometimes a combination of these symptoms. I tried to develop a kind of grading system in my poop diary. LOL!

It seems we are discovering that fiber can lead to a puff poopie. I have also been finding that I am likely to have a "moderate" puff poopie the following AM if I have eaten 2 foods in the same day that have each given me "slight" puffs in the past. I guess this is due to the "dose" issue.

I DO believe you are on the path to remission, BTW. It's always one step forward and 2 back it seems. But progress IS being made. I am sure of it.

Hang in there.

Polly xoxo

Pat · Post by **Pat** » Mon Feb 21, 2011 7:01 pm

Hi all!

I am only on day 4 of the Leap diet. I am seeing some progress: Less volume, but nothing close to Norman yet. I am sure it is too soon. DH and I eat some of the same foods at lunch and dinner but breakfast has been different for years. He eats cereal, milk, juice, and fruit and I eat Quinoa and peanut butter! Never dreamed I would be eating that! If it weren't for legumes I would starve. I guess I have so many intolerances and I didn't react to many legumes that she thought I needed the calories. I am willing to eat any way I need to to improve!

Pat

Gloria · Post by **Gloria** » Mon Feb 21, 2011 9:00 pm

Good luck with the LEAP diet, Pat. I truly hope it ultimately brings you relief from the D.

I thought you'd appreciate knowing that I ate 1/2 banana with cereal twice last week and didn't have any change in my BMs.

Maybe it's a matter of degree - I couldn't eat a whole banana. It also might have something to do with eating it with cereal. Perhaps the fructose was balanced with the sucrose in the cereal. I ate the whole banana alone. At any rate, there may be hope for us!

Gloria

Pat · Post by **Pat** » Mon Feb 21, 2011 9:28 pm

Gloria,

That is super great news! You give me so much hope, Gloria. One day I will be able to eat some fruit too...and not have D. Polly, Mary Beth, and many others have given me so much hope as well. I really do appreciate this board. Thank you so much!

Pat

ant · Post by **ant** » Tue Feb 22, 2011 12:07 am

Dear Gloria

That sounds like good news!

You seem to be at about the same place as I am stalking the MC monkey (except you have been clambering through the jungle much longer than me).

We are both at one entocort a day. This morning I got Norman visit on first BM and "firmish" on the second BM - I define "firmish" is one better from mushy since it still has a form but is very soft. Better than my definition of "soft" which is unformed mush, but not "D".

I am currently eating cooked veggies (no legumes or nightshades) as well as rice, fish, seafood and meat.

I am thinking I will not taper down to one entocort every other day till I get at least two weeks of Normans. Does that make sense to you?

Best ant

Kari · Post by **Kari** » Tue Feb 22, 2011 4:18 pm

Hi everyone - there is so much cheerful news on this thread, so I'm thoroughly enjoying reading it. Congrats to all of you with your progress on the MRT/LEAP program. Sorry you can't get the test in HK, Ant, as I'm sure you would find it very valuable. It's another great tool for the MC tool chest

.

Based on my own experience, I do believe that the test has a high degree of accuracy, but like every other tool we use, it's not perfect, so work still has to be done in ferreting out sensitivities. Like many others here, I have double DQ1 genes, and a boatload of sensitivities, so managing my recovery with food alone is extremely challenging. Because I have such a terrible history with any kind of medication, I'm considering entocort only as a very last resort, so as much as I have been tempted to try it, I'm still holding out.

I believe another thing that is making my recovery very challenging is the fact that I had MC with D for at least 10 years before discovering the food angle. The amount of damage to my gut must have been extensive, since I never went a day without lots of bread, cheese, coffee and bananas - all of which I have discovered are very toxic to my system. Basically, at this point in time, I'm eating none of my former favorite foods.

To get back to MRT/LEAP, I have not progressed very far, as I got into the worst flare since I went gluten free last July. No matter what I tried, I couldn't seem to get back on track. I believe the trigger was guar gum in the coconut milk I had almost daily in one form or another. Since it has a high calorie count, I was using it to help halt the weight loss I had been experiencing. I was low reactive to coconut itself on the test, so chances are I can still have it in pure form, but I'm holding off on trying it again until my system gets a lot more stable.

Anyhow, the flare seems to finally have subsided with the help of imodium. It's interesting that I had a bad reaction to imodium last year when I tried it, but this time, it seemed to do the trick - yeah!!! I'm still eating very few foods, and holding off on introducing new things until I feel more confident about my system stabilizing. Having the guideline of the MRT test is very useful, and I will probably be using it for a very long time to come. I am so looking forward to having more variety in my diet, but patience seems to be essential with this dreaded disease.

Wishing all of you continued success and look forward to future updates.

Love,
Kari

mbeezie · Post by **mbeezie** » Tue Feb 22, 2011 5:09 pm

Pat,

Do you have double DQ1 genes as well? We double DQ1-ers do seem to struggle quite a bit.

Kari,

Bummer that you are still flaring and struggling. When I was at my worst I think I just reacted to the act of eating . . . it didn't seem to matter much what the food was. It was during that time I did MRT and got on the diet. I briefly took 75 mg zantac daily for my mast cells but when I tried to increase it to 150 mg I reacted to it and discontiued it. I also took an H1 blocker at that time. Like others who have to use Entocort, I did have to use some meds to calm things down at first. Sometimes we need to do what we need to do. I feel the same way you do about medicine, so I understand what you are saying. After about 6 weeks on the diet and the use of those meds I started to see improvement. So maybe the use of Entocort plus MRT could be beneficial.

Love,

Mary Beth

Pat · Post by **Pat** » Tue Feb 22, 2011 6:14 pm

Mary Beth,

I don't think so:

HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0301
Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7).

Pat

Gloria · Post by **Gloria** » Tue Feb 22, 2011 11:32 pm

Ant,

I've been thinking that we're in about the same place, too. I've been on one Entocort a day for 18 days and am trying to decide when to go to every other day myself. I've had Normans pretty consistently, but I'm still very cautious. I've gotten my hopes up sooo many times.

So, to answer your question, I think that you should have perfect Normans, and only perfect Normans for a few weeks before you reduce again. That's assuming you've eliminated any additional problematic foods.

I've had plenty of experience at reducing Entocort, but I'm not an expert at getting off of it completely. However, I feel this time is different because I am having consistent Normans. I am considering reducing to one Entocort every other day this weekend, which would be a little over three weeks since I went down to one.

Good luck, and keep us posted with your progress. I'll be sure to post mine.

Gloria