I almost feel like breaking out and having a really egg and gluten filled meal, but not quite! I look at those foods and remember how I feel when I eat it, and walk on by.
But I am eating a SO restricted diet now (bad grammar, but you know what I mean), and I am STILL feeling that way. Pain, pressure, headache, exhaustion etc.
No grains. Just potatoes, meat, coconut and overcooked spinach, carrot or asparagus (all allowed by my MRT and enterolab). I have cut out all supplements except for L-glutamine in tablet form, because they are everything free, bromelaine (for the inflammation) calcium and potassium in powders for the GERD and vit D.
So why am I feeling this way?
My BMs (5 or 6 yesterday, and 2 this morning) and formed, very thin, soft, and slightly mucousy. I wouldn't mind that so much if I felt better,, since it's not D or C, but I don't.
SO discouraged....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Lesley,
What form of coconut are you eating? Wondering if coconut could be a problem? Lipstick? Toothpaste? I also wonder about a possible parasite or some other underlying problem. Have you ruled out mast cell issues? Spinach is a no no on low histamine diets. I would actually not try l-glutamine right now - do you know what the source of it is - wonder if it is causing some problem. Just a few thoughts. I wish you felt better too - so frustrating.
Mary Beth
What form of coconut are you eating? Wondering if coconut could be a problem? Lipstick? Toothpaste? I also wonder about a possible parasite or some other underlying problem. Have you ruled out mast cell issues? Spinach is a no no on low histamine diets. I would actually not try l-glutamine right now - do you know what the source of it is - wonder if it is causing some problem. Just a few thoughts. I wish you felt better too - so frustrating.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Coconut - mostly milk. If it begins to be a problem I will cry and cry. The ice cream keeps me sane. It doesn't hurt to eat (everything else does) and it helps to keep me from feeling so deprived, which I wouldn't if I felt better.
I have been tested for parasites. The tests were negative.
I did tryptase blood tests, but I know those aren't reliable. One was slightly raised, so it was repeated, and the next was normal. I do NOT want to do another colonoscopy to get the necessary biopsies. Anyway, I am struggling to get my doc to reply to me. I can't be sure that mast cells are not playing a part with me, so I will leave spinach alone. I like it, but I don't mind not eating it.
I am using gluten free toothpaste, and I don't wear lipstick.
The L-Glutamine I am taking is made by Country Life. It says on the bottle - No yeast, corn, wheat, soy, gluten, milk, salt, sugar, starch, preservatives or artificial color. I'll stop it if you think it could be causing any of this.
This latest flare (which won't go away) started after my endoscopy last Friday, so I am wondering if it was triggered by the anesthetic. If so I wish it would go away.
I am so bloated, getting dressed is a problem, and I want to go for a walk but am nervous since I can feel more BMs coming on.
I am only eating 5 or 6 foods altogether. What else can I cut out?
Thanks Mary Beth
I have been tested for parasites. The tests were negative.
I did tryptase blood tests, but I know those aren't reliable. One was slightly raised, so it was repeated, and the next was normal. I do NOT want to do another colonoscopy to get the necessary biopsies. Anyway, I am struggling to get my doc to reply to me. I can't be sure that mast cells are not playing a part with me, so I will leave spinach alone. I like it, but I don't mind not eating it.
I am using gluten free toothpaste, and I don't wear lipstick.
The L-Glutamine I am taking is made by Country Life. It says on the bottle - No yeast, corn, wheat, soy, gluten, milk, salt, sugar, starch, preservatives or artificial color. I'll stop it if you think it could be causing any of this.
This latest flare (which won't go away) started after my endoscopy last Friday, so I am wondering if it was triggered by the anesthetic. If so I wish it would go away.
I am so bloated, getting dressed is a problem, and I want to go for a walk but am nervous since I can feel more BMs coming on.
I am only eating 5 or 6 foods altogether. What else can I cut out?
Thanks Mary Beth
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Lesley,
So sorry you are still feeling so badly. I can relate to just wanting to throw it all over if we're not going to feel better anyway - I was thinking the same thing today. (I'll admit I'm more tempted to dump the other restrictions than gluten - gluten just seems to do so much damage and last so long I don't even want to risk it. But cheese, ice cream, butter, egg, soy, oranges, almonds? Oh, those are tempting!)
Hugs!
Deanna
So sorry you are still feeling so badly. I can relate to just wanting to throw it all over if we're not going to feel better anyway - I was thinking the same thing today. (I'll admit I'm more tempted to dump the other restrictions than gluten - gluten just seems to do so much damage and last so long I don't even want to risk it. But cheese, ice cream, butter, egg, soy, oranges, almonds? Oh, those are tempting!)
Hugs!
Deanna
Yeah, I can relate to that. I want some watermelon. I am a watermelon addict, and the thought that I can't have it is made bearable only by my ice cream.
Gluten is not a problem, if I could have crackers made with other ingredients, and cheese, eggs etc. Soy doesn't bother me much, but stuff made with rice and corn? Oh, I want some!
Gluten is not a problem, if I could have crackers made with other ingredients, and cheese, eggs etc. Soy doesn't bother me much, but stuff made with rice and corn? Oh, I want some!
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
http://glutenfreeeasily.com/five-stages ... -plus-one/
I don't remember where I found this originally, but I discovered it among my bookmarks this week. I think it is appropo here. Lesley, I believe you are going through the stages of grief (which we all do, are, have, are stuck in). Be patient with yourself. You will get your life back. Actually the author of this article calls that the sixth stage: embracement.
I don't remember where I found this originally, but I discovered it among my bookmarks this week. I think it is appropo here. Lesley, I believe you are going through the stages of grief (which we all do, are, have, are stuck in). Be patient with yourself. You will get your life back. Actually the author of this article calls that the sixth stage: embracement.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Hi Lesley. I'm soooo sorry you are still struggling but it's so ironic that you were talking about throwing in the towel as well as another member as I just had this conversation with my mom about 2 hours ago. Since I am c dominant and have been on this bloating and gaseous ride for about a month straight ( had 3 good days until I had to take antibiotic) I'm too the point of just giving in. Been gf for 6 weeks and df and sf for at least 10 and I feel if I'm going to have the gas problem with restrictions what is the point. I'm hungry all the time and miserable with gas and honestly I think part of the gas stems from being so hungry. It is a dilema we are in and I do mourn the loss of pastries almost every day! Anyway just wanted you to know you aren't alone. Hope you have a better day tomorrow. Just remember go out in the California sun and try to enjoy it a little.
Sondra
Sondra
Please consider rescuing a dog from your local shelter today.
You see, I am not throwing in the towel. I just feel like it, or almost, because it's been going on for SO long, and I don't seem to get any better.I almost feel like breaking out and having a really egg and gluten filled meal, but not quite! I look at those foods and remember how I feel when I eat it, and walk on by.
Sondra, I know what C dominated MC is like since I have always had it. One imodium, or even half and I can go 3 weeks without a BM even though I glug laxatives by the gallon when that is happening. Then I get the reverse, and go days with pencil thin, slippery stools, or watery, mucousy ones, until I have to take a little bit of imodium, and so in ad infinitum, or so it seems.
Marliss, thanks for that. I am well past the stages of grief. (I actually did a seminar with Kubler-Ross when she visited Israel aeons ago - fascinating lady). I had really come to terms with the illness, but I seem to keep relapsing, no matter what I do. I have bankrupted myself doing the tests. I have spent fortunes on supplements, foods, flours, new cooking gear etc., but I don't seem to get any better.
Today, when I got up after a lousy night, feeling that same exhaustion, pressure and pain I just wanted to go our and eat a HUGE gluten filled breakfast, and the heck with the consequences. Just so!
But I didn't. So here I sit, and I vent to you.
Thanks HEAVENS for this place.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Lesley
it is easy to get overwhelmed by the sacrifices and changes and still not feeling great.....
before MC, cooking was a big part of my life including cake decorating. I was even at a stage that I would do paid work for engagement parties and birthday parties.
as part of the acceptance of MC in our lives, the changes we have made, we have to grieve the losses and move on.
I have given all the cake decorating stuff to a friends with kids.
something that has worked for me is to put my energy (albeit sometimes limited) and focus into things that dont involve food, meals, socialisation, things dont have a deadline or are big projects, things i do if i have the time.
-i can go out and do 1 hour of photography in the local park, it is free, it is 5 mins from home if i need to get back for the toilet. Dont need to pack any snacks or worry about the next meal
- the days where i am a bit poorly, reviewing and editing the photos keeps me entertained
before the photography i was doing handsewing and small sewing projects. any time i am near a fabric store i check out the fabric from the scraps bin, or the end of roll section which are normally 50% off.
for the past 14 months i have been making covered coathangers and I also make washbags, being a rectangle of fabric 3/4 the size of a pillowcase with a zipper in it, you put your good clothes in them in the washing machine and it is like hand washing them.
both the coathangers and the bags are what i give friends for birthdays, christmas, thank yous etc. The hangers has expanded into a kids range. and this weekend based on special requests, i am making coathangers for a christening dresses and communion dresses using some lovely bridal satin fabric.
then there is reading as well.
these are inexpensive activities that use my brain a bit without being physically taxing, they are activities that you can invest an hour or a day, I get to be a bit creative and it is completely different to my work tasks.
last year when i was recovering from the oral surgery, i made about 20 coathangers in a week! as i was pretty well stuck on the lounge
I am not a good sewer at all, the fabrics i use mean you dont see any of the sewing. and my friends dont look at the sewing, they look at the colour, the design, and the fact that it was made with love.
I know that you have been trying everything you can, and the last 12 months have been full on symptoms wise, and it is all emotionally, physically and mentally exhausting. by taking a step away from what is overwhelming you and finding something that feels good to do is the best cure i can suggest
big hugs
it is easy to get overwhelmed by the sacrifices and changes and still not feeling great.....
before MC, cooking was a big part of my life including cake decorating. I was even at a stage that I would do paid work for engagement parties and birthday parties.
as part of the acceptance of MC in our lives, the changes we have made, we have to grieve the losses and move on.
I have given all the cake decorating stuff to a friends with kids.
something that has worked for me is to put my energy (albeit sometimes limited) and focus into things that dont involve food, meals, socialisation, things dont have a deadline or are big projects, things i do if i have the time.
-i can go out and do 1 hour of photography in the local park, it is free, it is 5 mins from home if i need to get back for the toilet. Dont need to pack any snacks or worry about the next meal
- the days where i am a bit poorly, reviewing and editing the photos keeps me entertained
before the photography i was doing handsewing and small sewing projects. any time i am near a fabric store i check out the fabric from the scraps bin, or the end of roll section which are normally 50% off.
for the past 14 months i have been making covered coathangers and I also make washbags, being a rectangle of fabric 3/4 the size of a pillowcase with a zipper in it, you put your good clothes in them in the washing machine and it is like hand washing them.
both the coathangers and the bags are what i give friends for birthdays, christmas, thank yous etc. The hangers has expanded into a kids range. and this weekend based on special requests, i am making coathangers for a christening dresses and communion dresses using some lovely bridal satin fabric.
then there is reading as well.
these are inexpensive activities that use my brain a bit without being physically taxing, they are activities that you can invest an hour or a day, I get to be a bit creative and it is completely different to my work tasks.
last year when i was recovering from the oral surgery, i made about 20 coathangers in a week! as i was pretty well stuck on the lounge
I am not a good sewer at all, the fabrics i use mean you dont see any of the sewing. and my friends dont look at the sewing, they look at the colour, the design, and the fact that it was made with love.
I know that you have been trying everything you can, and the last 12 months have been full on symptoms wise, and it is all emotionally, physically and mentally exhausting. by taking a step away from what is overwhelming you and finding something that feels good to do is the best cure i can suggest
big hugs
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Lesley,
There are only a handful of coconut milks that do not have additives. Does your coconut milk have guar gum or another thickener? Could be reacting to that.
Try stoppping the l-glutamine temporarily and see what happens (maybe all supplements for a few days). If symptoms come under control then add them back one at a time and determine if you are tolerating them. Freeda vitamin D is supposedly free of my reactive foods, yet I reacted to it and am not sure why.
If your tryptase was high then I am very suspicious of mast cell involvement. This might be something to consider. Mine was never elevated when tested, yet I had the symptoms and responded to histamine blockers.
Hang in there - you will figure this out.
Mary Beth
There are only a handful of coconut milks that do not have additives. Does your coconut milk have guar gum or another thickener? Could be reacting to that.
Try stoppping the l-glutamine temporarily and see what happens (maybe all supplements for a few days). If symptoms come under control then add them back one at a time and determine if you are tolerating them. Freeda vitamin D is supposedly free of my reactive foods, yet I reacted to it and am not sure why.
If your tryptase was high then I am very suspicious of mast cell involvement. This might be something to consider. Mine was never elevated when tested, yet I had the symptoms and responded to histamine blockers.
Hang in there - you will figure this out.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Lesley,
I had a thought. Did you say you sweeten your ice cream with agave nectar? I wonder if that might be causing your problem. Do you react to stevia? Or maple? Maybe one of those or another sweetener might work better for you than agave, which according to my nutritionist/naturopath is at least as refined as sugar and can have residual toxins besides.
Maybe that would help?
Deanna
I had a thought. Did you say you sweeten your ice cream with agave nectar? I wonder if that might be causing your problem. Do you react to stevia? Or maple? Maybe one of those or another sweetener might work better for you than agave, which according to my nutritionist/naturopath is at least as refined as sugar and can have residual toxins besides.
Maybe that would help?
Deanna
Gabes, what lovely ideas! The idea of selling a line of covered clothes hangers is brilliant! Post some pictures of your work.
I am also trying to be creative and to distract myself. I have gone back to drawing, which I haven't done for years. I am trying to learn to master pastels, and I have already spent money I don't have to buy the ones I like. I messed up the carpet in my very small apartment with them (they go everywhere!) so yesterday I spent constructing an area where I can draw and just wipe my mess off. I stuck cheap vinyl tiles on plywood so I can mess to my hearts content.
I take my camera with me when I go out, so that when I see something I want to draw I take a picture (I'm not much of a photographer, but I can frame a picture).
I also LOVE to spend time at the pool. I listen to books on tape while I am in the water (I have a waterproof ipod. I am a reading maniac and always have a couple of books going, one print on paper, one on the ipod, and one in the car.
Since I got hurt on the job I have been in pain and unable to do very much, so I have been using all these methods of distraction for quite a while, though drawing is being resurrected just lately.
Deanna, I thought of the agave nectar, which wasn't on my green list, (although I was using the raw one, which is not so refined) so I have been playing between sugar and maple, which are.
Mary Beth - no gum in the coconut milk,of any kind, or any other additives. I have been using the Trader Joe's one, and one from Whole Foods which also has no additives. I have been really careful to steer clear of additives.
The first test showed slightly elevated tryptase, but the second one was normal. I also think that if one was high it shows that there are mast cell issues, so I have been taking histamine blockers. Claritin wasn't good for me, but Zyrtec is. I am taking famotidine with it, so I am getting H1 and H2.
I will not eat spinach since it is a histamine, (didn't think of it - stupid) and will try to avoid all others.
Tonight I ate a plain lamb chop with a potato. 1/2 an hour later I was in the toilet again. I guess eating anything is upsetting me and I need to let it subside. It's just so tiring.
I watched Midnight in Paris with a dear friend tonight. I am a movie buff, and this one is so wonderful! I am ready to watch it again, and pause at certain scenes to draw.
Thanks everyone! I SO appreciate you guys. I don't know what I would do without you. I can't talk poop to the people around me.
Hugs all around. Big ones!
I am also trying to be creative and to distract myself. I have gone back to drawing, which I haven't done for years. I am trying to learn to master pastels, and I have already spent money I don't have to buy the ones I like. I messed up the carpet in my very small apartment with them (they go everywhere!) so yesterday I spent constructing an area where I can draw and just wipe my mess off. I stuck cheap vinyl tiles on plywood so I can mess to my hearts content.
I take my camera with me when I go out, so that when I see something I want to draw I take a picture (I'm not much of a photographer, but I can frame a picture).
I also LOVE to spend time at the pool. I listen to books on tape while I am in the water (I have a waterproof ipod. I am a reading maniac and always have a couple of books going, one print on paper, one on the ipod, and one in the car.
Since I got hurt on the job I have been in pain and unable to do very much, so I have been using all these methods of distraction for quite a while, though drawing is being resurrected just lately.
Deanna, I thought of the agave nectar, which wasn't on my green list, (although I was using the raw one, which is not so refined) so I have been playing between sugar and maple, which are.
Mary Beth - no gum in the coconut milk,of any kind, or any other additives. I have been using the Trader Joe's one, and one from Whole Foods which also has no additives. I have been really careful to steer clear of additives.
The first test showed slightly elevated tryptase, but the second one was normal. I also think that if one was high it shows that there are mast cell issues, so I have been taking histamine blockers. Claritin wasn't good for me, but Zyrtec is. I am taking famotidine with it, so I am getting H1 and H2.
I will not eat spinach since it is a histamine, (didn't think of it - stupid) and will try to avoid all others.
Tonight I ate a plain lamb chop with a potato. 1/2 an hour later I was in the toilet again. I guess eating anything is upsetting me and I need to let it subside. It's just so tiring.
I watched Midnight in Paris with a dear friend tonight. I am a movie buff, and this one is so wonderful! I am ready to watch it again, and pause at certain scenes to draw.
Thanks everyone! I SO appreciate you guys. I don't know what I would do without you. I can't talk poop to the people around me.
Hugs all around. Big ones!
Hang in there, my friend. I don't have any suggestions, just my good wishes for you.