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Kari
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Food Intolerances : gluten, dairy, soy
Location: Colorado

PostPosted: Tue May 03, 2011 6:11 pm    Post subject: Update Reply with quote

Hi fellow LEAPERS,

It's been a while, so thought I'd post an update.

The good news is that I'm feeling much stronger and still have mostly one or two BM's a day. Yes, you guessed it, the bad news is that Norman is still absent. So in an effort to "firm things up" I decided to do an experiment by getting off all grains and legumes, and eat strictly unprocessed foods. However, after a couple of weeks of that, I did not see any improvement, so I'm back to eating rice and refried beans. I will stay away from whole beans for now, but I really don't think I have a major issue with them (yeah).

I've discovered that I cannot seem to tolerate any cold cuts or seafood, so my main proteins have come from organic chicken and beef from "Natural Grocers". I have been suspicious of beef for quite some time, and today I got my suspicions confirmed by my acupuncturist (she specializes in food and airborne allergies). I'm keeping my fingers crossed that eliminating it will make a difference, as I have eaten beef pretty consistently. She also tested me for pork, and that seemed fine, so I will try adding pork again.

Overall, my health is vastly improved. I have energy, need less sleep, and mostly greet each new day refreshed and ready to go. My weight has been stable going on 3 months now, but it seems impossible to gain any of it back. I'm not eating any sugars, so that probably has something to do with it. My sweet treat is boiled apples, or pears, with cinnamon. I also occasionally have some water melon, honeydew, or figs.

Since I still don't feel that I'm "stable" I will continue with my very limited and simple diet for the time being. Given the way I feel most of the time, the food sacrifices are well worth it. I'm hoping that beef is my final "additional" food offender. I also discovered that I cannot tolerate almonds, so had to eliminate them. This was sad, as home made almond milk seemed to be a great addition to my diet. However, after reading Kelly's post, I will try making cashew milk, which will hopefully agree with me.

My main focus right now will be to prepare for my upcoming trip to Norway. If that goes well, and I come back still feeling good, I will continue with the LEAP program and test more items. I try very hard to vary what I eat from day to day, but with such a limited number of foods, it does not seem possible to do a 3 day rotation program at this point in time.

My story might seem a bit discouraging for people new to MRT, so I'd like to qualify it by saying that I had MC with D. and the other nasty symptoms for 10+ years before finding out about the food connection, and I'm treating my MC with diet alone. So I expect that it will take me a longer time than average to reach stability. However, I believe that MRT has helped put me far ahead of where I'd be if trying to figure out all my food sensitivities on my own.

Love,
Kari
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sarkin
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Joined: 10 Mar 2011

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Food Intolerances : Gluten, dairy, eggs (maybe more?)
Location: Brooklyn, NY

PostPosted: Tue May 03, 2011 8:46 pm    Post subject: Reply with quote

Kari, this is very encouraging!

It sounds as though you've worked out what you need to to make your trip a success. Glad beans are working for you (I do have some hopes for chickpeas and lentils especially).

For me, I think sweets are less important in the weight-maintenance picture than fats. But I am also influenced by my preferences for fat/salt over sugar, perhaps.

Is it a different process to determine how we respond to less-popular proteins, like lamb, duck, etc.? Venison? (Maybe even Elk, in Norway??)

I hope you can get just the right number of foods in the list for the rotation to work - even if it takes until after you travel.

Love,
Sara
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Gloria
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Joined: 07 Jul 2007

Posts: 4754
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Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Tue May 03, 2011 10:36 pm    Post subject: Reply with quote

Kari,

I would be putting your trip to Norway as your highest priority, also. You are doing the best you can to ferret out your intolerances, and it sounds like your overall health is improving.

It's a shame that the almonds didn't work for you. I can't eat cashews; I hope they will be a good replacement for the almonds.

You mentioned that you suspect you have mast cell problems in another post. Eliminating high-histamine foods does reduce acceptable foods quite a bit. I think it would help figure out your intolerances if you could get a 3-day rotation plan, but I know that it's not easy with such a limited selection of foods. It took me quite a while to figure it out. Now that I'm on it, I don't want to change it. Not because I like it; it's actually pretty boring, but it's safe.

Gloria
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irisheyes13
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Joined: 28 Jan 2011

Posts: 212
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Food Intolerances : Gluten, Casein, Soy, Eggs & Yeast so far...
Location: Pittsburgh, PA, United States

PostPosted: Wed May 04, 2011 8:26 am    Post subject: Reply with quote

Kari,

What a detailed and hopeful update and I didn't find it at all discouraging! I'm watching and trying to learn by your posts so thanks so much for taking the time to detail what's been happening with you. We are so very similar in our history with MC. I, too, suffered with MC for just under 10 years before I made the food connection. Quite honestly, looking back, I experienced GI symptoms on and off for quite a few years prior to full onset of MC and lived with the "IBS" diagnosis since my early 20's. I agree with your thought process regarding the longer we went untreated and symptomatic, the longer it may take us to heal.

Although you continue to find additional intolerances, at least you are figuring them out. And more importantly you are feeling so much better, have more energy and your weight has stablized which is HUGE!! As Polly says- WAHOO!! That makes this update nothing but positive:)

Norman will eventually arrive, it's only a matter of time, patience and lots of studying the winning the pooh journal;)

Although almonds may not be your friend, do give the cashew milk a try. The bonus with making cashew milk is that it is a quicker process because they are a soft nut to begin with so they only need to soak for an hour or two and don't need to be blanched. The one hint I would give you is don't overblend to the point that they cashews are pulverized so small that they get stuck in the milk bag. I did this the first time and spent a long time trying to get all the minute pieces out of the bag. The second attempt I didn't blend as long and didn't have the problem but still yielded the same amount of milk and seemed as rich. Cashews are much softer than almonds therefore need less blender time IMHO. I really hope the cashew milk is tasty and agrees with you.

My fingers and toes are crossed that since you uncovered a few more foods that may not be agreeing with you (for now), you are one step closer to consistent normans and more stability for that incredible trip to Norway.
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Kelly

Believe deep down in your heart that you are destined to do great things~ Joe Paterno
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Kari
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Joined: 05 Sep 2010

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Food Intolerances : gluten, dairy, soy
Location: Colorado

PostPosted: Wed May 04, 2011 2:04 pm    Post subject: Reply with quote

Sara, Gloria and Kelly - thank you for your kind notes and well wishes - it's sooo appreciated.

Gloria - it's definitely my goal to end up with a rotation diet. I actually think it's because I've tried to separate the foods to the best of my ability that I uncovered my sensitivity to beef. However, to do the complete rotation, I need more foods in my diet, and am holding off until after my trip. I find it amazing how you've been able to manage this separation so very well with such a limited diet.

Kelly - I'm glad you took my report to be positive, as I feel loads better than I have in a very long time. I forgot to mention to you in the other post that I highly recommend that you use celtic sea salt if you don't already. It costs more, but is actually quite nutritious and I love it.

Sara - you made me think when you questioned fats versus sweets for weight gain, so a quick google search turned up this interesting link:
http://lindaprout.com/nodietblog/2010/08/06/fru...tening-than-lard/

Love,
Kari
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sarkin
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Joined: 10 Mar 2011

Posts: 2313
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Food Intolerances : Gluten, dairy, eggs (maybe more?)
Location: Brooklyn, NY

PostPosted: Wed May 04, 2011 2:32 pm    Post subject: Reply with quote

Kari, you sound great - your trip will be wonderful, and then you'll take more steps down this road.

It's so funny that I was thinking of 'weight gain' as good, and 'fattening' as bad. It is probably the case that I just like fats better than sugars... and they are more satisfying. I have only lost about 10 pounds (was not overweight, and am not underweight now... I think I'm stable-ish). I'm sure I would teach myself to like sugars very much if that's what it would take!

I think you and Kelly have pointed to something very important - that we think we know our safe foods, but we might be wrong. (This seems strange, but then I considered that wheat is the staff of life, which we are acculturated to suspect least of all.) I believe I am relying heavily on something I should omit for now, and maybe try later. But I don't yet know what. Turkey? (You are all showing me the way to figure it out!) I'm going to do some super-simple days, but I think it will be weeks, not days, before I know.

So glad you're feeling well. That is so much better than any missed food could possibly taste. Gloria, when you wrote earlier today about boring-but-safe... that sounds like a good tradeoff. I am much better, but not as well as I'd like to get.

Love,
Sara
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Pat
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Canada

Joined: 17 Nov 2006

Posts: 1068
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Food Intolerances : Gluten, Dairy, Soy, Egg, Beef, Chicken, All fruit, All vegetables except some squash, Corn, Rice, Maple, Basil, Coconut, Cane Sugar, Carob, Vanilla, Mustard, Polysorbate 80, Capsaicin, MSG, Benzoic Acid,
Location: Texas

PostPosted: Thu May 05, 2011 4:15 pm    Post subject: Reply with quote

Kari,

I am beginning to suspect beef (or maybe bison) too I have to do a real test. I was doing really pretty good eating turkey and then when I cooked some bison burgers it changed. Then I had some beef and no better yet. I am back to turkey now and will test once I get better. This really sucks to put it bluntly. My weight is better too but I am getting pretty tired of eating the same thing all the time. DH said he wouldn't be able to do what I do but I really don't feel I have a choice. I tried the med route and that didn't work and diet seems to help. I'm just not there yet.

Pat
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Gloria
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Joined: 07 Jul 2007

Posts: 4754
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Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Thu May 05, 2011 6:02 pm    Post subject: Reply with quote

Pat,

I'm sorry that you suspect beef and bison. Turkey seems to be my most agreeable meat, too. My variety of eating it includes turkey burgers, grilled turkey cutlets, turkey breast, and turkey sausage with breakfast. One time when I went to Whole Foods, they had their turkey breast on sale. I asked if they could cut the breast into cutlets for me, and they did without charging any extra.

I hope we both can someday increase the foods that we're able to eat. I'm not there yet, either.

Gloria
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Kari
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Joined: 05 Sep 2010

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Food Intolerances : gluten, dairy, soy
Location: Colorado

PostPosted: Fri May 27, 2011 7:27 pm    Post subject: Reply with quote

Thought I'd give you fellow LEAPERS and anyone else a new update, in the hope that someone will find it useful.

It is now 5 months and a week since I got my MRT results and dropped all the "reds and yellows". Throughout that time there have been quite a few ups and downs, but on average more ups than downs. I have not progressed much past the initial phase of eating a very limited diet, but I'm feeling so much better, which is more important to me than eating a large variety of foods.

When I dropped beef, there was a noticeable improvement in the "quality" of my BM's. I actually started having norman visits - imagine that. However, my normans always get softer towards the end, so I can't claim to have had a "perfect norman":). That's a substantial improvement for me, so I know I'm on the right track. During the last 4 weeks, I have only had D twice, and no WD's, and have had only 1 BM per day on 23 of the days, and 2 on the other 5.

Here is what's happening foodwise:

Chicken is the only "meat" I'm eating.

I've been working with the acupuncturist to desensitize to seafood, and have started testing it. So far, I seem to be OK with Shrimp and Tilapia, and will start ever so cautiously to include them in my diet.

I'm doing fine with beans, so I regularly eat refried beans, great northern beans and black beans (my favorites). Again, in limited amounts, and not every day.

I've retested almonds, and am now doing fine with the almond milk. When I tried cashew milk, I got very nauseous, so I've stayed away from that.

I'm good with rice, as well as potatoes.

My veggies are well cooked cauliflower, broccoli, green beans and yellow squash.

My only salad is avocado/cucumber/onion, which I've come to appreciate immeasurably.

I'm now fine with onions and garlic - yeah!!!

For fruits, I'm good with soft boiled apples and pears w/cinnamon. I also occasionally have strawberries, raspberries, watermelon or honeydew, and seem to do reasonably well with them.

Water is my drink - sometimes I squeeze grapefruit or lime into it, and am starting to test lemon again.

I have finally found B and D vitamins I can tolerate - so I take them every day.

I have started testing a protein powder - I seem to be OK with it, but am not 100% sure yet.

The only oil I use is EVOO, and my flavorings are celtic salt, cayenne pepper (very limited), ginger, turmeric, fresh cilantro and GF soy.

For sweets, I occasionally have dates or figs, and very occasionally a bit of maple syrup in my almond milk, or in my cinnamon apples/pears and cereal. I also sometimes have the ginger snaps noted below.

Here is a list of the "processed" foods I have tested and included:

Pamela's pancakes
Edward and Son's rice snaps
St. Dalfour Fig and Pear jams
Enjoy Life crunchy rice cereal
Arrowhead Mills Puffed Rice Cereal
Go Raw Ginger Snaps
Earth Balance butter spread

Can't think of anything else, so that pretty much covers my diet.

I have found that I cannot have any alcohol at this point in time. It does not give me an MC reaction, but it invariably keeps me up at night, no matter how small the quantity. Since I have never been a big drinker, that seems like a small issue. The only time I miss it is on "Bunco Night" - we're 12 women who get together and play once a month, and we always have some nice wine.

The other thing I'm having trouble with is sugar, since shortly after I eat it, I experience noticeable fatigue and depression - the reaction goes way beyond the regular "sugar crash". Any ideas on why this happens would be appreciated.

Well, there you have it, my "current status". I'm hoping and praying that my good fortune with the BM's will hold up for my Norway trip. So other than working on the seafood, everything else is pretty much on hold, to be continued when I get back. I'm very, very excited about the prospect of beginning to experiment more in the kitchen; even with my very limited diet, I seem to be spending an inordinate amount of time in there.

Hope all of you are doing well - wishing you health and happiness.

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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tex
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Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri May 27, 2011 7:45 pm    Post subject: Reply with quote

Kari,

You've really been working on this. So how did the testing on those processed foods turn out?

Love,
Tex
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Gloria
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Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Fri May 27, 2011 7:58 pm    Post subject: Reply with quote

I'm glad you're progressing. Just one BM per day most of the time is a big improvement, no matter what type it is. All the better that it's mostly Norman. I hope that you'll be able to eat without worry when you travel to Norway. I don't quite understand how your acupuncturist is desensitizing you to seafood, but if it works, more power to him/her.

The only concern I have about your diet is I'm wondering if you are getting enough iron with chicken as your only meat. I assume you're getting blood tests done to be sure.

Kari wrote:
I'm very, very excited about the prospect of beginning to experiment more in the kitchen; even with my very limited diet, I seem to be spending an inordinate amount of time in there.

I'm finding that I spend more time in the kitchen than I ever did when I was eating a much larger variety of foods. But I wasn't making my own milk, tortillas, mayonnaise, etc. then. Some days I'm in the kitchen all morning until after lunch. And then people ask me what I do to keep busy. How do I explain that everything I put in my mouth is made from scratch?

Hopefully someone can explain the fatigue and depression from eating sugar. I will occasionally get low blood sugar and must quickly eat something, but I know I don't have diabetes.

Thank you for sharing your progress. It's always interesting to read what others are doing to manage their MC.

Gloria
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nancyl
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Food Intolerances : dairy, not sure about anything else yet
Location: Massachusetts

PostPosted: Fri May 27, 2011 8:06 pm    Post subject: Reply with quote

Hello ladies,
I loved reading all of your posts and get so much helpful information. Not only that, but I can see that a lot of what I am doing is pretty much what you all are doing. I eat pretty much the same foods all the time too. Chicken, beef, baked potatoes with DF, SF spread, well cooked asparagus, carrots, yellow squash, to name a few. At least I have gained two pounds and was just telling my husband, there is no way I am going to put my weight back on not having dairy or eggs. I make the almond milk and use it for cooking, but do not like it as a drink. I tried smoothies and it seems to overpower the fruit I add. I am 5' tall and weighed 115 when this began last August. I went down to 102.5, but now up to 104.5. I am just happy to be feeling good and have my energy back. I just hope I'll be OK when he takes me off of Entocort in a couple of weeks. I will have been on it for about 2 months or so.

Kari, that was a very interesting article. That explains a lot too, as I'm not eating much with sugar either. I'm sure you'll have a wonderful trip. I bet you can't wait. How long will you be in Sweden?

Nancy
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sarkin
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Joined: 10 Mar 2011

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Food Intolerances : Gluten, dairy, eggs (maybe more?)
Location: Brooklyn, NY

PostPosted: Sat May 28, 2011 8:00 am    Post subject: Reply with quote

Kari,

What a wonderful update! You sound well set for traveling, both with things you might find in Norway and things you carry along.

But even better, you are feeling good, and have found a diet that's working consistently. Reasons for optimism well beyond your travels!

I'm glad about the almonds - my homemade almond milk has been a good carry-along. I used to carry water, but am finding the nutrition helpful when out and about. I'm going to try the rice & ginger snaps as "to-go foods," too. I was just wondering why I've never tried Earth Balance, and then realized I'm not really eating anything that I'd put it on ;)

I'm so pleased for you - congratulations on doing the long, patient work that's gotten you this far. I know the rewards sometimes seem very slow to show up, so this is very encouraging for all of us.

Love,
Sara
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Kari
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Joined: 05 Sep 2010

Posts: 1207
User's local time:
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Food Intolerances : gluten, dairy, soy
Location: Colorado

PostPosted: Sat May 28, 2011 11:14 am    Post subject: Reply with quote

Tex - I sure have :) - I think figuring out the beef sensitivity (green on MRT) finally put me in a kind of "remission". I have been wondering what people consider to be "remission", but it sure feels like I am there. My gut is calm almost all the time now - I actually forget about it being there from time to time :). The most maddening thing for me while going through this process was that no matter how hard I tried, I could never figure out which foods were "non-reactive". Without that you simply don't have a starting point to build from. I have successfully tested the "processed" foods I listed. As I'm sure you know, even though they are processed, they are very pure and have very few ingredients. You can't imagine how happy I was when I did fine with Pamela's pancakes, as the mix does contain quite a few ingredients. I don't even put any sugar/syrup on them, just EB - but that's good enough for now. The only sugar I occasionally have is maple.

Gloria - LOL about the kitchen - I find myself in the same place - I think what adds so much time to the routine is the cleaning up we have to do. For instance, after I just made almond milk, I had to clean the blender, deal with the pulp, clean the bag, etc. I also seem to be using an inordinate number of pans while cooking. Good thing I'm retired, as I probably spend half my days in the kitchen :). If you are interested in more information about how the desensitizing to foods through acupuncture works, it was covered quite well by Gabes in the "Bubbles and Squeak" thread. When I get back from Norway, I'm due for my annual check-up, so I plan to do extensive blood work then. Even though I don't eat red meats, I eat a fair amount of beans, which contain iron, albeit not the easily digested form found in beef. Now, if I could only bring myself to eat chicken liver, as it seems to be on the top of the list of iron rich foods :).

Nancy - I'm so glad to hear that you're doing better - that's awesome. I wish I could find a way to gain back a few pounds as well, but I figure time will take care of it. I did drop a couple of additional lbs. after eliminating beef, and am struggling to gain them back (my total weight loss since last summer is 25 lbs.). My trip is about 2 1/2 weeks - I leave on June 14 and return on July 1.

Sara - thank you for your upbeat note and good luck with trying the "Go Raw" Ginger Snaps. I'm so grateful to have found something packaged that will be easy to bring along, and is fairly nutritious - the ingredients are Organic Coconut (Unsulphured), Sprouted Organic Sesame Seeds, Organic Dates and Organic Ginger Powder.

Love,
Kari
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"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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hoosier1
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Joined: 06 Sep 2010

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Food Intolerances : Gluten
Location: Indiana

PostPosted: Sat May 28, 2011 3:28 pm    Post subject: Reply with quote

Kari,

Earth Balance Butter Blend is excellent. I don't even recall what old fashioned butter tastes like. Glad you are seeing some semblance of Norman. You have definitely put forth the effort.

Rich
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"It's not what I believe. It's what I can prove." - A Few Good Men
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This site does not recommend or endorse any specific tests, products, procedures, opinions, or other information that may be mentioned anywhere on this site. Reliance on any information provided here is solely at your own risk.

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