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mbeezie
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Food Intolerances : gluten, dairy, soy, tapioca
Location: Texas

PostPosted: Tue May 03, 2011 3:10 pm    Post subject: Reply with quote

Kelly,

Any food can be suspicious. Your idea of cutting out coconut because you are eating it daily sounds like a good plan. I'm going to PM you with a few more thoughts.

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

PostPosted: Tue May 03, 2011 4:36 pm    Post subject: Reply with quote

Hi Kelly,

Wow - your story sounds so much like mine. Had a Norman after eliminating all the yellows and reds, but after starting the LEAP program, things got dicey. I'm thinking that perhaps it is because you're suddenly eating a diet that's quite different from what your body is used to. So, best case scenario, it's just a transitional thing. On the other hand, I have found that I'm reactive to several of the greens, and it has been a long, slow process to ferret them out, which is still going on. However, I don't think you were sick for very long before getting tested (???), so hopefully it will be easier and faster for you to figure this out and get stable.

Another thought is that you might be reacting to the seafood. Even though I was green for all but salmon (albeit high green for most of them), I have had to eliminate all seafood for now. Mary Beth thought I might have a histamine issue, which I suppose could be the same for you???

I'm glad to hear your comments about the cashew milk - got my "bag", but have not been able to try it, as I believe almonds are a problem. Now I have a large stash of almonds that I can't seem to tolerate:(. I'm pretty sure I'm OK with cashews, as I tolerate the butter, so I will try making cashew milk next. By the way, like you, I also tested high green for almonds.

I know you're going through a very tough time, but hang in there, as the saying goes around here "it WILL get better". A lot of people are rooting for you!!!! Wish you all the best as you move along in the program.

Love,
Kari
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Pat
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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: Tue May 03, 2011 5:03 pm    Post subject: Reply with quote

So, Kelly, were you eating all the sugar and fruits when you had the normans? I cannot tolerate any or I have gas, bloating, D, and muscle aches. When I have tested anything with fructose or a fructan I get really achy hands among other parts. When I had the fructose malabsorption test I was told it takes 3 days to get it all out of your system once you quit eating it and it really took that long. What I am eating now is completely different from when I started the leap diet. It was difficult at first eating things and reacting and eliminating and trying something else and have it start all over again. I had to really get down to eating only a few things and then go from there. It's been 2 1/2 months and I am still figuring it out. I had added back my vitamins but recently gave them up again. I do so much better without them. I would recommend contacting your dietician and get their advice and I see MB is helping too. That's good!

Pat
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Gloria
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Joined: 07 Jul 2007

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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 10:14 pm    Post subject: Reply with quote

Kelly,

I know that the LEAP diet encourages you to try new foods, but I found that the more I tried foods I hadn't eaten before, the sicker I got. I finally decided to stick with familiar foods that I thought were pretty safe, but also eliminated all yellows and reds. In time, I discovered that some of the foods I thought were safe, weren't either.

Like Kari, I've had to avoid all seafood. I'm pretty sure that I have a mast cell problem and fish are high in histamines.

Good luck! The MRT test is helpful at eliminating more foods, but unfortunately it doesn't tell us everything. No test does, dang it. Life with MC would be so much easier.

Gloria
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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: Wed May 04, 2011 8:37 am    Post subject: Reply with quote

Gloria wrote:
The MRT test is helpful at eliminating more foods, but unfortunately it doesn't tell us everything.


I'm just a sideline spectator here, but my perception is that just as you suggest, the MRT test is helpful for eliminating problematic foods, but not so great when it promotes the introduction of too many new foods, too soon. We have to remember that we have a disease that very few people in the world actually understand, (basically, only those who actually have the disease), and programs such as these are designed and administered by people who do not have the disease, and therefore cannot truly understand it.

With MC, the primary goal is to eliminate problems in the diet, so that healing can occur. Introducing new foods is secondary, and should be done after there is some stability in one's GI health. Most medical professionals don't have the foggiest idea how long it takes for the gut to recover from the damage caused by MC. They tend to believe that once the offending "triggers" are removed, everything will be hunky-dory within a day or so. As we know, that isn't exactly the case. Our recovery response depends on where we are in the healing process. Introducing new foods is certainly important, in the long run, but treating MC is a long-term project, and constantly upsetting the apple cart by introducing so many "new" foods so soon, appears to me to be somewhat counterproductive. IMO, the time interval between the introduction of successive "new" foods should be lengthened.

At least that's how I see it. shrug

Tex
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irisheyes13
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Joined: 28 Jan 2011

Posts: 212
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2017 Aug 18 - 8:28 PM


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

PostPosted: Wed May 04, 2011 9:46 am    Post subject: Reply with quote

Thanks everyone for you thoughts, guidance and personal experiences.

With the help of my dietitian and Mary Beth's expertise (Thanks MB!) I'm eating only chicken, well cooked carrots, white potatoes, olive oil and sea salt for the next couple of days to see if things settle down.

Kari- I already posted to your great update thread but you mentioned some things that Mary Beth had also mentioned re:histamines and seafood. In addition to the GI upset, I also had a rash which broke out on the top of my foot which could be a histamine reaction as well. Even though I tested low green for the seafood I was eating, I have stopped all of it for now. Some of the other low green fruits which were higher in histamine/salicylates were held out until the second phase already. I'm prepared for this process to be long and most likely tedious to allow for some healing. Just hopeful that I will be able to tolerate enough foods to develop a rotation and a least a small amount of variety.

You mentioned testing high green for almonds too, where did you test in salicylic acid? Almonds are high in salicylates and I tested yellow.

Right now I feel like I'm experiencing the trifecta of 1.an ongoing flare with MC, 2.hyperthyroid symptoms (which have diminished somewhat) topped of with 3.oh-your-timing-is-impeccable menopause.Shocked confirmed via blood testing a few weeks ago.

I know I will get through this because I have all of you here to give me the support I need. I would never have been able to do this on my own-this I do know!

Pat- To answer your question regarding sugar and fruit- yes, during that wonderful week I experienced Norman, I was eating bananas and applesauce in small amounts as well as a bit of sugar primarily in Justin's nut butters and I had made some biscotti and had a cookie or two during that time. I had made the cookies and froze them prior to getting my Enterolab results back and they even contained 2 eggs in the ingredients. I had completely forgotten about the eggs until after the week had passed so I can't explain how or why it happened. The major change which I had made that seemed to bring some stability to my bowels was removing rice from my diet. I thought that was a huge breakthough and then the D returned exactly 7 days later.

The only consistency I can see is that when a major food is removed, I experience a temporary break from D only to have it return soon after. It sounds like I will also be following your path of getting down to a few basics and slowlyyyyy work my way to adding foods in. Currently I am on no supplements in phase 1 except my thyroid medication and beta blocker and my doses were just lowered on both and will wean off the beta blocker next week. I can't say that going off the supplements has made a difference in how I feel either way but understand the theory behind doing it. Hopefully you can find some safe vitamins down the road to help supplement the nutrients you may not be getting on your diet. If you feel better without them, better listen to your body. Are you able to tolerate vitamin D?

Gloria- Reading through your older posts and how you continued to get worse was the reason for my post. I didn't want to continue in the direction I was headed. The D is bad enough but the back and joint pain is very difficult to live through especially since I can't really take anything for the pain.

What I have learned from reading through so many posts is that what seems like the safest of foods for us can be what is causing us problems. Your recent discovery of ghee is incredible and I hope it is the last missing piece to the puzzle for you.

I'm so glad I had MRT testing done. Although it isn't perfect, it uncovered some additional foods which I had been eating and hadn't been suspecting as a problem. My thought is that although some of the greens are not agreeing with some of us now because of the inflammation and healing which still needs to take place, hopefully it's an indication that we'll eventually be able to tolerate it.
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Believe deep down in your heart that you are destined to do great things~ Joe Paterno
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irisheyes13
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Joined: 28 Jan 2011

Posts: 212
User's local time:
2017 Aug 18 - 8:28 PM


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

PostPosted: Wed May 04, 2011 10:23 am    Post subject: Reply with quote

Tex,

I didn't see your post until after I had posted. You are certainly more than a sideline spectator around here and your thoughts are valued immensely regardless of the topic. Very Happy

What you say makes a lot of sense and it seems to be the direction everyone ends up in. The exception to that would be Polly and possibly Mary Beth. I know Polly has breezed through her MRT with most of her testing proving to be accurate (Polly set me straight if this isn't correct). But the difference with Polly and the rest of us is that she had approximately 10 years of healing take place prior to beginning her LEAP diet.

What were the foods which worked for you during that time while your intestines were healing? Was it very restrictive? I know I had read a thread a while back where you had mentioned it but I can't remember now.Embarassed
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tex
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Posts: 30278
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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: Wed May 04, 2011 1:01 pm    Post subject: Reply with quote

Kelly wrote:
What were the foods which worked for you during that time while your intestines were healing? Was it very restrictive?


I initially cut out gluten, (I haven't eaten any gluten since August 28, 2002), and for a year and a half, I experimented with cutting out various other foods, while keeping a "Winning The Poo" diary. It finally dawned on me that the only way to get out of the rut I was in, was to cut out everything that seemed suspicious, (at the same time), and after I did that, remission came quickly, (within a couple of weeks).

For about a year and a half, I lived mostly on pork, potatoes, and eggs. I also ate, (in smaller amounts), chicken and rice. I occasionally ate small helpings of squash, green beans, or broccoli, though not every day. For liquids, I drank water, unsweetened tea, and Virgil's Root Beer. Obviously, my diet wouldn't work for everyone here, but as Gabes would say, "It was my way", so it worked for me.

For a while, I also drank Polly's 50-50 blend of club soda and Welch's 100% Grape Juice, but I had to stop when I discovered that if I drank more than about 8 or 10 ounces of it, I reacted to it. (I determined later that I'm sensitive to grapes, presumably the sulfites).

IOW, I cut out all gluten, dairy, soy, corn, yeast, all fruit other than bananas, and all vegetables other than the 3 named, etc. I didn't avoid sugar 100%, but I had to keep it at a very, very low level. IOW, no added sugar. The only sugar I could tolerate in any significant amount was maple sugar, so if I "had to have" something sweet, I ate maple sugar candy.

During the first year, I occasionally "tested" myself, to see if I had healed enough to be able to tolerate dairy, or corn, but it never worked, so I finally stopped testing. After about another 6 months, though, (IOW, after a total of about a year and a half on the restrictive diet), I found that I could tolerate corn, by eating a little, waiting a few days before trying a little more, etc., until I finally worked up to being able to handle normal amounts. I was able to do the same for other foods, including dairy. I don't regularly eat dairy these days, but I'm no longer sensitive to it. Back before I healed, I was sensitive to not only lactose, but to casein as well.

Today, (other than gluten), the only foods that cause a reaction are oats, (but that's an avenin reaction - avenin in oats is equivalent to the gluten in wheat), and grapes. I can eat a few grapes without incident, but a few more will flush me out just as quickly as oats will. Peanuts will make me feel cruddy, but they don't cause D.

Back when I was still healing, beef would trigger all the symptoms except D, (strangely enough). Now, I can eat beef without any problems at all.

So I was very lucky to come out of it with very few remaining food sensitivities. My GI doc never took any biopsies, so maybe I'm just a celiac, but back when I was reacting, like most of us here, it seemed that almost everything I ate made me sick, even after I cut out gluten.

I'm sure you're right about Polly. It's much easier to experiment with adding foods after we've been in remission for a long time, because our reaction to foods that we can't tolerate, are usually relatively short, and we recover much faster than someone whose intestines still have a long way to go to finish healing. Plus, she has a lot of professional knowledge and insight, and years of personal experience to help her judge her reactions. Some of this would apply to Mary Beth, also, of course.

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

PostPosted: Wed May 04, 2011 1:44 pm    Post subject: Reply with quote

Hi Kelly,

Wow - it sounds like you're finding yourself where I was in mid December last year - yikes. I was down to eating pork w/garlic salt, rice, EVOO and black coffee. When this still didn't work, I finally threw in the towel and went to a dietitian for help and took the MRT test. Lo and behold, I discovered that I was very sensitive to 3 of those items!!! I truly hope that this will not be the case for you and that your few items will settle your system, but just wanted to give you a heads up so you don't get to disappointed if it doesn't happen. I believe Gloria had a similar experience to me, where she was eating just about only chicken and rice, and discovered that she was highly reactive to chicken.

Yes, it certainly seems like we have a lot of similarities. I didn't realize you have suffered for such a long time. Anyhow, you are definitely on the right track now and WILL get there. Fortunately I did not show high sensitivity to Salicylic Acid, but one never really knows, as the test is just a guideline.

You'll be in my thoughts as you struggle to get back in line - I wish you all the best and am keeping my fingers and toes crossed for you. I think you can use one of these:

big big hug

Love,
Kari
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irisheyes13
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Food Intolerances : Gluten, Casein, Soy, Eggs & Yeast so far...
Location: Pittsburgh, PA, United States

PostPosted: Thu May 05, 2011 7:46 am    Post subject: Reply with quote

Tex- Thanks for taking the time to detail what your limited diet actually entailed, how long it took and how you reintroduced foods and when in such detail. I know you've probably explained it too many times to count over the years but I've not heard it before and it helped immensely. I think I could live on a diet similar to yours for 1.5 years...if only I could figure out what those limited foods are and start to move forward. Sigh.

The one point that I take away from your post and gives us all hope is that you were once sensitive to so many foods that you can now eat after the healing has taken place.

Kari- Thanks so much for the hug - it is needed right now and means so much to me. Yes, we are so very similar in our winding MC/thyroid path;) I've been on chicken, carrots and potatoes for a day and a half now but no positive changes yet...I'm going to give it some more time though. I did read that both you and Gloria had pared back to a very restricted diet that happened to include foods you ended up reacting red to via MRT. That is a bummer. Having MRT to help guide us is better than taking blind shots at what to eliminate. I'm trying not to panic because stress triggers my MC more than any food can. I have this reoccurring dream where I find out the only thing I tolerate is water. Shocked We all know it can't be that bad;)

Hugs back at ya!
Kelly
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sarkin
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Food Intolerances : Gluten, dairy, eggs (maybe more?)
Location: Brooklyn, NY

PostPosted: Thu May 05, 2011 3:42 pm    Post subject: Reply with quote

Kelly,

I know what you mean about stress and panic. I got small-scale glutened last Thursday - and on Saturday a.m. I still had D, and was on my way to teach a class... when my car battery turned out to be dead. I knew I had 30 students waiting, and there was no way to reach anyone because the switchboard was on weekend schedule, and the direct line phone numbers all connect to people who were... of course... setting up the special Saturday session. I got a jumpstart, realized I needed a new battery, got that done in a flash, and glanced in the rear view mirror and saw that I was completely ash-gray-green. I concentrated on breathing and driving sanely, and someone called me when I was almost there, to let me know that they had told the students to go get a cup of coffee. (When I almost wept to hear her voice, I realized that my breathing method wasn't doing the whole job.) I think that freakout is why it took me almost a full week to recover from the small amount of whatever was in my food (will check with the restaurant, now that I can modulate my tone of voice).

I know you will find your friendly foods, and I hope things settle for you soon. And though the process itself has certain stresses, your attitude is great, and you deserve to have some optimism that this long road is actually the shortcut ;)

love,
Sara
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irisheyes13
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Food Intolerances : Gluten, Casein, Soy, Eggs & Yeast so far...
Location: Pittsburgh, PA, United States

PostPosted: Fri May 06, 2011 10:02 am    Post subject: Reply with quote

Sara,

Sorry to hear about the Saturday escapades on top of being glutened. Those every-day-life hiccups can really do a number on our gut. Hope you are feeling totally recovered and ready for a relaxing weekend. What kind of class do you teach, if you don't mind the intrusive question(if so, just ignore it;)?

I know I will eventually get this stuff figured out but it helps so much when my friends here keep reinforcing it. I have had some low points over the last few days admittedly most likely brought on by hunger and being ill prepared to do something about it properly.

Your enterolab testing should be coming in any day now if they are still on their 3 week timeline. I'm very interested to see how you tested with all the proteins and hope for no big surprises and smooth sailing ahead. My daughter's should be following a few days after although I only had her tested for gluten, soy and dairy along with the genetic testing.

Love,

K.
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sarkin
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2017 Aug 18 - 8:28 PM


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

PostPosted: Fri May 06, 2011 10:44 am    Post subject: Reply with quote

Kelly,

I teach gardening, at the NY Botanical Garden in the Bronx. It was 'Container Gardening 101' - and I'm teaching the same class again later this month (they have special Saturdays with a theme, like shade gardening, edibles, or containers, so students can take a couple of classes on a topic).

My Enterolab testing won't be here quite so soon - I waited a week to take my sample, because they said to be sure you weren't taking more than a certain amount of oil-based supplements, and I wasn't absolutely sure, so I waited a week. And then I waited to drive my sample over the state line like some crazy contraband, because they cannot receive from or send to NY state... I did it on a lovely day and enjoyed my ride and did other errands in Connecticut. Anyway! I'm guessing it will be another 1.5-2 weeks... I bet they are swamped with all the new tests. I felt a little uncertain that I did the right thing, spending so much money, but that restaurant experience changed my mind. As I understand it, they list the additional proteins in order of relative tolerability, and though the experience of so many shows that they may say something's 'low green' (or whatever the Enterolab analog will be), I still have to work out what I truly can tolerate. At least this will give me some info to make a road map.

I think I truly cannot tell right now whether a particular day's symptoms are directly related to what I ate yesterday. Once I got 'mystery-fooded' last week, I was knocked totally off my new version of stable, which wasn't so very established in the first place. And on Saturday, I took 2 Pepto Bismol - which I think gave me the only piece of mind I experienced that morning, and I don't regret it, but it means that thereafter, I might *not* have reacted as strongly to something that might otherwise throw me... or I might have reacted *more* because I had the Pepto in my system, and that places its own burden on the body. It has helped me more than hurt me, but I don't consider it entirely benign.

I think you ordered the perfect tests for your daughter - hopefully, she won't be going down the road of multiple intolerances if you can get the biggies sorted out. If the genetics raise a red flag - thankfully, she will know that and can head off future problems before they arise, and she will recognize them if they do (sure hope it never happens). You will know so much as you continue your road to healing; should she ever need additional help - she will be inspired by your example. She sounds like an inspiring young woman already herself.

This getting hungry and being unprepared thing... I am a very slow learner! I keep thinking, oh no, I don't feel right, what's wrong? Um... it's lunchtime. (Lunchtime has always been the weak link for me - and yet it comes around each and every day!)

Hope you're settling into the swing and feeling stronger and more confident. It really does help to be here.

I should get out and do a little something in my own garden... after lunch!

Love,
Sara
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