Hi Leah,
It's so tough to lead a normal life with all these restrictions. I am low histamine and very low fiber. A few days ago I had 3 fruits from the low histamine list but the following day I didn't do well. I had horrible cramps from the fiber...You can't win. I usually limit myself to one fruit a day and maybe one vegie a day but I thought that since I am doing good maybe I'll try more. Mistake. I get so darn tired of eating starches and protein, it is maddening.
You can never let your guard down with this condition.
Monique
A slide backwards :(
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wmonique2
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a slide backwards
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
I know what you mean. I am so frustrated right now. I can't eat fruit because of fructose malabsorption. I can eat salad, but have no acid that I can put on it! I guess I should feel lucky to be able to eat vegetables. Now that I am trying to eat low histamine, I'm really bummed out about the loss of mushrooms also. Does this ever end?
Leah
Leah
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wmonique2
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a slide backwards
I am afraid, Leah, that it never ends. I can see your frustration. I am frustrated with this thing all the time. I don't know what you eat anymore. I went to a fashion show on Saturday and the buffet was enormous. I didn't touch a thing. I have acquired a bad case of food phobia.
I am following the low-histamine as well from the list Jean provided. At least that list gives you the level of tolerance. Can't recall where the mushrooms stand. Is it a 1 or a 2? Maybe even a 3 since they are fungi. I know they are not on my shopping list so they must be quite high up there in intolerance.
Hang in there, girlfriend. Try not to think about the losses. I went out last night and bought some cheese. I am not intolerant based on enterolab but I had eliminated it. Well, last night I added it back from the low histamine list only because I can't find anything else to eat and I am sick of chicken, rice cakes and rice. Let's see how that works ;-)
Monique
I am following the low-histamine as well from the list Jean provided. At least that list gives you the level of tolerance. Can't recall where the mushrooms stand. Is it a 1 or a 2? Maybe even a 3 since they are fungi. I know they are not on my shopping list so they must be quite high up there in intolerance.
Hang in there, girlfriend. Try not to think about the losses. I went out last night and bought some cheese. I am not intolerant based on enterolab but I had eliminated it. Well, last night I added it back from the low histamine list only because I can't find anything else to eat and I am sick of chicken, rice cakes and rice. Let's see how that works ;-)
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
I will let you know how this goes. I wish I could have cheese ( I don't even know for sure about caesin) , but the histamine thing....
I e-mailed my doctor about this whole mast cell thing. I'm interested in how he answers me. I don't think he will know what the hell I am talking about though I was warning him that I might be asking for Cromulyn Sodium if my diet and DAO supplement doesn't work.
Leah
PS mushrooms are bad
I e-mailed my doctor about this whole mast cell thing. I'm interested in how he answers me. I don't think he will know what the hell I am talking about though I was warning him that I might be asking for Cromulyn Sodium if my diet and DAO supplement doesn't work.
Leah
PS mushrooms are bad
Monique and Leah,
I realized on Saturday that I am starting to react to my Enjoy Life chocolate.
It feels like a mast cell reaction, like I have with bananas but not as severe. No rash but the heartburn sensation, in spite of the meds I take for that. I've never tested cocoa but I know sugar is not my friend, so I don't know if it's one or the other, but to have to give up a food that is gf, sf, df, ef, etc just seems hugely unjust.
Yup, I'm whining-- and I probably won't stop for another couple of days.
Carol
I realized on Saturday that I am starting to react to my Enjoy Life chocolate.
It feels like a mast cell reaction, like I have with bananas but not as severe. No rash but the heartburn sensation, in spite of the meds I take for that. I've never tested cocoa but I know sugar is not my friend, so I don't know if it's one or the other, but to have to give up a food that is gf, sf, df, ef, etc just seems hugely unjust. Yup, I'm whining-- and I probably won't stop for another couple of days.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Well, I might as well join this pity party. It is almost 100 degrees here in Denver - way too hot to venture out.
The only thing that has changed for me over the years, is that I have a higher tolerance for D. I used to be so totally devastated when all my efforts produced minimal results, but now I'm able to focus on other more productive things without feeling like a total failure.
Here are the things I have tried in order to reach remission:
Enterolab Testing
Elimination diet
MRT Testing
Accupuncture for food allergies
Accupressure for food allergies
Muscle response testing at home (w/SO) for every single thing I put in my mouth
H1 Blocker
H2 Blocker
Histame
Close to totally sugar free
Water being the only beverage
Caffeine free
Keeping a "winning the poo" log
Pepto Bismol treatment
Azacol treatment
Imodium
Small meals
Chewing food thoroughly
Not eating out
Probiotics
There are probably many other things I can't think of right now........
These "attempts" have met with varying degrees of success or failure, but here I am almost 3 years later with D. every day!!!!!!
I'm doing the best I can by eating an extremely limited diet of supposedly "safe" foods. Even though the foods are "safe", I still test them frequently with SO (muscle response). I do take Imodium (usually one pill every couple of days), which slows down the motility. I would take them every day, but am afraid of developing an intolerance to them, which seems to be my pattern.
So there you have it - my contribution to the "pity party" :).
Oh well - tomorrow is another day - may be it will cool off a bit and I will experience the "spontaneous remission" I was promised 10 years ago
.
Love,
Kari
P.S. Before MC, one of my best friends was fond of saying: "Without food, what's the point" and we used to laugh about it - little did I know.............
The only thing that has changed for me over the years, is that I have a higher tolerance for D. I used to be so totally devastated when all my efforts produced minimal results, but now I'm able to focus on other more productive things without feeling like a total failure.
Here are the things I have tried in order to reach remission:
Enterolab Testing
Elimination diet
MRT Testing
Accupuncture for food allergies
Accupressure for food allergies
Muscle response testing at home (w/SO) for every single thing I put in my mouth
H1 Blocker
H2 Blocker
Histame
Close to totally sugar free
Water being the only beverage
Caffeine free
Keeping a "winning the poo" log
Pepto Bismol treatment
Azacol treatment
Imodium
Small meals
Chewing food thoroughly
Not eating out
Probiotics
There are probably many other things I can't think of right now........
These "attempts" have met with varying degrees of success or failure, but here I am almost 3 years later with D. every day!!!!!!
I'm doing the best I can by eating an extremely limited diet of supposedly "safe" foods. Even though the foods are "safe", I still test them frequently with SO (muscle response). I do take Imodium (usually one pill every couple of days), which slows down the motility. I would take them every day, but am afraid of developing an intolerance to them, which seems to be my pattern.
So there you have it - my contribution to the "pity party" :).
Oh well - tomorrow is another day - may be it will cool off a bit and I will experience the "spontaneous remission" I was promised 10 years ago
.Love,
Kari
P.S. Before MC, one of my best friends was fond of saying: "Without food, what's the point" and we used to laugh about it - little did I know.............
"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
Hmmm, Kari, I've done most of the things on your list too-- except muscle response, Azacol, histame (because it's from pork and I react to pork), and acupressure. I could add amitriptyline for motility, plus I have to take Citrucel (1tsp). And I'm only 2 years in.
But... you did just get back from a great trip to San Francisco and I see that as a huge success. I have hopes that eventually I'll be able to successfully go on a lengthy trip. I think I'm getting there but it is a long, slow, sometimes exasperating journey.
Carol
But... you did just get back from a great trip to San Francisco and I see that as a huge success. I have hopes that eventually I'll be able to successfully go on a lengthy trip. I think I'm getting there but it is a long, slow, sometimes exasperating journey.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Ah, I wish I could just gather you all in a big hug. And then wave my fairy-godmother wand and make it all better.
But on the reality side, this scares me. Is remission possible? Is some semblance of normalcy possible to sustain? It seems like we are hearing lots of stories of getting worse recently.
I have been needing more imodium in the last few weeks. Not every day, but I need a half an imodium a couple times a week. Not a lot of medicine, but not what I had hoped for.
As Kari says, tomorrow is another day.
Martha
But on the reality side, this scares me. Is remission possible? Is some semblance of normalcy possible to sustain? It seems like we are hearing lots of stories of getting worse recently.
I have been needing more imodium in the last few weeks. Not every day, but I need a half an imodium a couple times a week. Not a lot of medicine, but not what I had hoped for.
As Kari says, tomorrow is another day.
Martha
Martha
Listen to us, we do sound so pitiful right now. Maybe we are all a little worse right now because it is allergy season??? But it's good to be able to talk to someone other then my poor husband about it. I don't know if remission is possible, but I am still hoping. Like Kari, I too am use to not having solid BMs, but as long as it doesn't get worse then it is now ( only in the AM), then I might have to live with it. We will see. It took Tex an awful long time to heal. I don't have to take Imodium, so I guess I should consider myself lucky.
Heads up ladies!
Love, Leah
Heads up ladies!
Love, Leah
I should have qualified my post by saying that I'm HUGELY better than before changing my diet. I pretty much do whatever I want to do without worrying about "emergencies". That includes traveling, which I have done several times successfully. The lingering problem for me is the lack of "Norman visits", and I just cannot figure out why that is. Perhaps this is my "normal", and I have to accept it without stressing about it.
Like so many others here, I'm a type A personality, and a perfectionist, so it has been really tough to live with something I consider "broken". Feeling a bit like a failure for not being able to control and "repair" this condition has been hard to deal with. I usually don't complain because my life in general is really great, and I'm ever so grateful for my mostly good health. However, it sure felt good to vent a little
- this PP family rocks 
.
Love,
Kari
P.S. I agree with you, Leah, that allergy season may make things a bit worse.
Like so many others here, I'm a type A personality, and a perfectionist, so it has been really tough to live with something I consider "broken". Feeling a bit like a failure for not being able to control and "repair" this condition has been hard to deal with. I usually don't complain because my life in general is really great, and I'm ever so grateful for my mostly good health. However, it sure felt good to vent a little
- this PP family rocks .Love,
Kari
P.S. I agree with you, Leah, that allergy season may make things a bit worse.
"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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wmonique2
- Rockhopper Penguin
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a slide backwards
Carol, Leah et all..
Most of us have tried or are still trying everything on Kari's list. But to call this a "pity party" is to mischaracterize the role of this board and our role in it.
To expect perfection is like trying to catch the wind. This condition is predictably unpredictable. And you are type A, then you're making your life a lot more difficult. Going with the flow is what it takes.
Remission? Perhaps utopian. But it doesn't stop us from trying. Because trying is all we can do.
Monique
Most of us have tried or are still trying everything on Kari's list. But to call this a "pity party" is to mischaracterize the role of this board and our role in it.
To expect perfection is like trying to catch the wind. This condition is predictably unpredictable. And you are type A, then you're making your life a lot more difficult. Going with the flow is what it takes.
Remission? Perhaps utopian. But it doesn't stop us from trying. Because trying is all we can do.
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Hi, Is total emission possible? Thinking back to the when "Norman's " were 90% of the BM's, there were days when BM's of No. 7 & 8 on the BSC replaced the Norman's. Usually, it was the food I ate, virus and bacteria and when it passed the Norman's returned. Fortunately, I do not take any drugs only some supplements and protein shakes. When, I was dx over ten years ago I did not have any symptons and was having my age related colonoscopy. After, I recieved the results I had a positive gluten anti-body test by entrolabs and then went g-f. Then, slowly eliminated refined- sugar and diary and soy. I try to eat only the recommended vegetables, meats and fruits recommended in the Paleo Diet. But, have to include high quality carbs. The most BM's in a day reached five but now has improved to one or two a day and range between a BSC 5 or 6. The question I have for Cory is, what type of muscle test? Jon
Well rats, I was planning on wallowing in self pity for at least another 24 hours over the loss of chocolate. I mean this isn't like my MRT testing telling me I can't eat lima beans. This is BIG-- 
This is chocolate we are talking about!
I have so few vices left....
Carol
This is chocolate we are talking about! I have so few vices left....
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Count me in guys and dolls!
I wish I could get sugar free. I constantly have to suck on something to help with the GERD, and the only thing I can have is rock candy. So I can't get sugar free.
The damn constipation drives me NUTS, and I struggle with it until I get relief with a day of D. And the exhaustion drives me nutser.
And now Licorice is constipated! No poop for 3 days. If she doesn't go by tomorrow the vet will have to give her an enema. Poor little girl.
Fun to have a pity party with people who understand. Only people who have it get how it rules your life on a day to day basis, even when it's "better".
I wish I could get sugar free. I constantly have to suck on something to help with the GERD, and the only thing I can have is rock candy. So I can't get sugar free.
The damn constipation drives me NUTS, and I struggle with it until I get relief with a day of D. And the exhaustion drives me nutser.
And now Licorice is constipated! No poop for 3 days. If she doesn't go by tomorrow the vet will have to give her an enema. Poor little girl.
Fun to have a pity party with people who understand. Only people who have it get how it rules your life on a day to day basis, even when it's "better".
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wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
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a slide backwards
Carol. Lesley et all
Pity party is the only party I can attend. When I go to a real one, I can't eat anything
Carol, I haven't eaten any chocolate for so long that I forgot how it tastes. And yesterday, for all things, I received a box of chocolates from a friend who came back from London and brought me one! I have been looking at it for a few hours now and wondering if I should throw caution to the wind and hell with it, have a blast, Monique. And a blast is probably what I'll get!
Screw it.
Monique
Pity party is the only party I can attend. When I go to a real one, I can't eat anything
Carol, I haven't eaten any chocolate for so long that I forgot how it tastes. And yesterday, for all things, I received a box of chocolates from a friend who came back from London and brought me one! I have been looking at it for a few hours now and wondering if I should throw caution to the wind and hell with it, have a blast, Monique. And a blast is probably what I'll get!
Screw it.
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)