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your opinions, please...
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draperygoddess
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your opinions, please...
I'm hoping for some input: had a setback a week and a half ago, thought it was my beloved Sunkist Fruit Gems, but now I'm beginning to suspect there's something else going on. I seem to be on a roller coaster of C for a day or two, then D or just loose, slippery stools and lots of cramping. Also have been having a respiratory allergy reaction (to fabric refresher spray) for the past two days--the stuff never bothered me before, but I've been coughing ever since I used it. As I'm becoming more and more convinced that there is a mast cell issue here, I'm now wondering if I could be reacting to something more mundane, like the well-cooked squash and zucchini I had this week, or the banana I ate last night, or even the Pamela's bread I've been eating this week. Does anyone have a suggestion? I've been a little alarmed by how quickly I've lost weight, even without major D--I lost several pounds over the last week, and although I'm not in the danger zone yet, I don't really have any more I can afford to lose.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Cynthia,
If you suspect mast cell problems, then bananas are a prime suspect. However, Pamela's mix contains cultured buttermilk, (casein), tapioca flour, and xanthan gum, which can cause problems for many of us.
Tex
If you suspect mast cell problems, then bananas are a prime suspect. However, Pamela's mix contains cultured buttermilk, (casein), tapioca flour, and xanthan gum, which can cause problems for many of us.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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draperygoddess
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Tex,
I knew the pancake mix contained casein--the bread does, too? I must have missed it when I read through the ingredients--usually I'm looking for potato starch. Still, casein doesn't usually cause this type of reaction for me, and it's usually quicker. So the banana, then? And I'm trying to remember--mucous and floaters indicate what? I wouldn't think there was a lot of fat, because the only meat I've had all week was white meat chicken. I would say this is my first full-fledged flare since I went into remission, but with new symptoms.
I knew the pancake mix contained casein--the bread does, too? I must have missed it when I read through the ingredients--usually I'm looking for potato starch. Still, casein doesn't usually cause this type of reaction for me, and it's usually quicker. So the banana, then? And I'm trying to remember--mucous and floaters indicate what? I wouldn't think there was a lot of fat, because the only meat I've had all week was white meat chicken. I would say this is my first full-fledged flare since I went into remission, but with new symptoms.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Cynthia,
It sounds like you're experiencing a version of what I went through. I was in what I would consider remission, but then very gradually, things started to go downhill again to the point that I was forced to pay attention. It all culminated in a runny nose that wouldn't stop running. Doing some research, I quickly discovered that it was histamine intolerance. I have had just about all the major symptoms of HI since childhood.
I was finally able to get things back to manageable by paying attention to low histamine foods and taking Histame twice a day - I also use imodium when needed, which seems to settle things. I know you're prone to C., so imodium probably would not be an option for you. When I started the low histamine diet, I lost the few pounds I had been able to gain during remission, but my weight has stabilized, so I'm fine with that.
I used to eat bananas every day for years, but MRT showed them as highly reactive :(. Anything coconut is a friend of mine, and I believe including it in my diet helps me keep my weight stable. Earth Balance makes a peanut butter with coconut that's delicious, but you may not be able to have peanuts. Also lots of EVOO helps me with the weight.
that you're able to get past your latest MC hurdle quickly.
Love,
Kari
It sounds like you're experiencing a version of what I went through. I was in what I would consider remission, but then very gradually, things started to go downhill again to the point that I was forced to pay attention. It all culminated in a runny nose that wouldn't stop running. Doing some research, I quickly discovered that it was histamine intolerance. I have had just about all the major symptoms of HI since childhood.
I was finally able to get things back to manageable by paying attention to low histamine foods and taking Histame twice a day - I also use imodium when needed, which seems to settle things. I know you're prone to C., so imodium probably would not be an option for you. When I started the low histamine diet, I lost the few pounds I had been able to gain during remission, but my weight has stabilized, so I'm fine with that.
I used to eat bananas every day for years, but MRT showed them as highly reactive :(. Anything coconut is a friend of mine, and I believe including it in my diet helps me keep my weight stable. Earth Balance makes a peanut butter with coconut that's delicious, but you may not be able to have peanuts. Also lots of EVOO helps me with the weight.
that you're able to get past your latest MC hurdle quickly.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
Hi,
As Tex already mentioned Xanthan Gum can cause D (in fact if you look it up one of it's uses listed is laxative). I also ate what I thought was safe by it saying gluten free and had 2 days of D and gas due to the xanthan, if fact almost anything that has gum in it effects me.
Hope you feel better soon.
KK
As Tex already mentioned Xanthan Gum can cause D (in fact if you look it up one of it's uses listed is laxative). I also ate what I thought was safe by it saying gluten free and had 2 days of D and gas due to the xanthan, if fact almost anything that has gum in it effects me.
Hope you feel better soon.
KK
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Joefnh
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Depending how the xanthan gum was made causes issues for me. It can be made from either a corn or soy based stock. I suspect if it's made in the States it will be made from corn and if made in Asia, there is a good chance it's made from soy.
About 14 months ago I had tried the Bisquick pancake mix and had a significant flare up, after talking with thier representative it was determined that they used a soy based stock in thier xanthan gum.
I have found that if I use Bobs Red Mill or King Aurthurs xanthan gum that I do OK, in talking with both of those companies I was able to verify that they use a corn based product.
About 14 months ago I had tried the Bisquick pancake mix and had a significant flare up, after talking with thier representative it was determined that they used a soy based stock in thier xanthan gum.
I have found that if I use Bobs Red Mill or King Aurthurs xanthan gum that I do OK, in talking with both of those companies I was able to verify that they use a corn based product.
Joe
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draperygoddess
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Thanks, Guys!! 
Kari, I printed off Tex's list of high-histamine foods and histamine-releasers. Were you surprised by your MRT results, or were they things you pretty much already knew you had a problem with? I'm hopeful I can do MRT later this year. I will have to research the other symptoms of histamine intolerance--I was a walking allergy as a kid, but never had any food intolerances until recently. I try not to take Immodium unless I really have to because it does tend to give me C for a few days, but sometimes I just don't have the luxury of sitting in the bathroom all day. It is effective for me, though!
Tex, KK and Joe, I already knew I didn't do well with GF Bisquik--there again, I assumed it was the potato starch. I don't think I've had problems with xanthum gum before, and this flare started before I made the bread, but you never know!! I will have to keep an eye on that one. I make homemade banana bread, GF, which is really good, but I have noticed that I can't overdo it (and I haven't made any for several months now), so bananas could be part of it, too. I am taking it easy today--unsweetened applesauce and some decaf tea, maybe some chicken soup tonight.
Kari, I printed off Tex's list of high-histamine foods and histamine-releasers. Were you surprised by your MRT results, or were they things you pretty much already knew you had a problem with? I'm hopeful I can do MRT later this year. I will have to research the other symptoms of histamine intolerance--I was a walking allergy as a kid, but never had any food intolerances until recently. I try not to take Immodium unless I really have to because it does tend to give me C for a few days, but sometimes I just don't have the luxury of sitting in the bathroom all day. It is effective for me, though!
Tex, KK and Joe, I already knew I didn't do well with GF Bisquik--there again, I assumed it was the potato starch. I don't think I've had problems with xanthum gum before, and this flare started before I made the bread, but you never know!! I will have to keep an eye on that one. I make homemade banana bread, GF, which is really good, but I have noticed that I can't overdo it (and I haven't made any for several months now), so bananas could be part of it, too. I am taking it easy today--unsweetened applesauce and some decaf tea, maybe some chicken soup tonight.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Mucus is connected with inflammation, (the mucosa tries to protect itself from luminal pathogens by secreting copious amounts of mucus), and floaters indicate a low specific gravity, (usually due to a high gas content).Cynthia wrote:And I'm trying to remember--mucous and floaters indicate what?
I had the same perception, back when I was recovering - I could eat a little banana bread without any noticeable problems, but if I ate more than, say, half a slice, it would do me in.Cynthia wrote:I make homemade banana bread, GF, which is really good, but I have noticed that I can't overdo it (and I haven't made any for several months now), so bananas could be part of it, too.
In hindsight, that was probably an unrecognized mast cell reaction. Back in those days, though, we had never heard of mast cell issues in relation with MC, so if someone had even mentioned "mast cells", I probably would have visualized a group of prison cells high up on the mast of a sailing ship, and I would have wondered what that could possibly have to do with MC.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I am happy to report my mast cell reactions to food aren't too bad. I seem to have a fairly high threshold compared to many here. I finally proved it to myself by inducing the worst mast cell mediated food rejection I have ever experienced, during a birthday brunch I cooked for my hubby. Check out this list of what I ate. It was all GF/DF and SF, but insane nonetheless.
-4 mimosas (half champagne, half OJ)
-strawberries, pineapple, cantelope, bananas, clementines, grapes
-smoked salmon
-eggs with peppers, mushrooms, bacon and onion
-hash-browned potatoes with onions, garlic and chili powder
-coffee
Less than an hour after eating, I was curled up on the bed with cramps, then running to the bathroom with multiple bouts of watery D. Luckily I was back to normal later in the day, with no D the next day, and nothing but normans a few days later. That was the last mimosa I will ever drink.
I do have skin mast cell issues, particularly in heat and during exercise. It'll be interesting to see how I do this summer with it.
-4 mimosas (half champagne, half OJ)
-strawberries, pineapple, cantelope, bananas, clementines, grapes
-smoked salmon
-eggs with peppers, mushrooms, bacon and onion
-hash-browned potatoes with onions, garlic and chili powder
-coffee
Less than an hour after eating, I was curled up on the bed with cramps, then running to the bathroom with multiple bouts of watery D. Luckily I was back to normal later in the day, with no D the next day, and nothing but normans a few days later. That was the last mimosa I will ever drink.
I do have skin mast cell issues, particularly in heat and during exercise. It'll be interesting to see how I do this summer with it.
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draperygoddess
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zizzle--WOW!! I'm amazed you weren't more sick than you were! That reads like Tex's list of histamine foods! So your main mast cell reactions are of the skin variety? Have you always had them, or is it something that showed up when you were an adult?
There are so many things that I have always just accepted as being "normal" for me, and now I'm starting to re-evaluate them. My skin is always, always dry, and often itchy. My scalp still breaks out in painful little bumps every few weeks, and I can't pinpoint what could be causing it. I had asthma as a child, usually triggered by my myriad allergies, but also by exercise. It still acts up from time to time, especially if it's really cold. I'm notorious for always being cold--I wear flannel pajamas and socks to bed, and I have a heated waterbed! I never connected my headaches with intolerances before my whole MC adventure started, but there is a definite pattern there. I am fortunate that I don't have the flushing and exercise/heat-induced symptoms that so many of you do, and I've never been told I have low blood pressure, though I am prone to dizziness and motion sickness. I don't think my symptoms are necessarily indicative of a systemic mast cell issue, but there is definitely something going on in my digestive tract, at least!
Tex--I think my reaction was the same as yours to the term "mast cell." (Prison cells on ships' masts--tee hee! Love the mental image!) I had never heard of them before this forum! Apparently my GI hasn't either.
Didn't I read a post where you stated that about 70% of MCers have some kind of a mast cell issue? I am putting the Histamine Foods list up with my GF/DF/SF/MSGF lists!
There are so many things that I have always just accepted as being "normal" for me, and now I'm starting to re-evaluate them. My skin is always, always dry, and often itchy. My scalp still breaks out in painful little bumps every few weeks, and I can't pinpoint what could be causing it. I had asthma as a child, usually triggered by my myriad allergies, but also by exercise. It still acts up from time to time, especially if it's really cold. I'm notorious for always being cold--I wear flannel pajamas and socks to bed, and I have a heated waterbed! I never connected my headaches with intolerances before my whole MC adventure started, but there is a definite pattern there. I am fortunate that I don't have the flushing and exercise/heat-induced symptoms that so many of you do, and I've never been told I have low blood pressure, though I am prone to dizziness and motion sickness. I don't think my symptoms are necessarily indicative of a systemic mast cell issue, but there is definitely something going on in my digestive tract, at least!
Tex--I think my reaction was the same as yours to the term "mast cell." (Prison cells on ships' masts--tee hee! Love the mental image!) I had never heard of them before this forum! Apparently my GI hasn't either.
Didn't I read a post where you stated that about 70% of MCers have some kind of a mast cell issue? I am putting the Histamine Foods list up with my GF/DF/SF/MSGF lists!Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Well, the research team that originally described the term "mastocytic enterocolitis", (ME), determined that 70% of people who have an inflammation-based digestive system disease, including not only MC, but also those who have any other IBD, or celiac disease, qualify for a diagnosis of ME, based on the presence of an elevated mast cell count, on analysis of intestinal biopsies.Cynthia wrote:Didn't I read a post where you stated that about 70% of MCers have some kind of a mast cell issue?
That doesn't necessarily guarantee that all of those people will have clinical symptoms of mast cell activation syndrome, however - it just implies that mast cell irregulatities are associated with inflammatory bowel diseases of all types.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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MBombardier
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Cynthia,
Can't say I was "surprised" by anything on my MRT results list since at the time I seemed to react to everything, including water :). I had tried the elimination diet, but could not figure out a single "safe" thing to eat. I was down to pork chops (with garlic salt), bananas and coffee when I did the test, and found out that I was reactive to bananas, coffee and garlic :(. However, when I got over the shock of the results and changed my diet to the least reactive items on the list, my system responded with giving me the first Norman visit in over a decade.
MRT is a great tool when you are trying to fine tune your diet - sort of like a food road map:). For me, it was well worth the money spent.
Love,
Kari
Can't say I was "surprised" by anything on my MRT results list since at the time I seemed to react to everything, including water :). I had tried the elimination diet, but could not figure out a single "safe" thing to eat. I was down to pork chops (with garlic salt), bananas and coffee when I did the test, and found out that I was reactive to bananas, coffee and garlic :(. However, when I got over the shock of the results and changed my diet to the least reactive items on the list, my system responded with giving me the first Norman visit in over a decade.
MRT is a great tool when you are trying to fine tune your diet - sort of like a food road map:). For me, it was well worth the money spent.
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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Sheila
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I am having the first flare in many months. I added bananas to my breakfast routine of chex cereal and either rice or almond milk. I had no idea that bananas could cause a problem. Duh and Yikes, no wonder I got the D back. It did take some time. I noticed first a lot more gas than usual and then after a week or two, the D started again. After being reminded, I cut out Celebrex again, continued bananas, upped the entocort from 1 to 2 a day and the D stopped but not the usual norman. After reading these posts, no more bananas for me. :(( I think it would be wise to have MRT testing and I had better read up on Mast cells and histamine. I'm not really familiar with either and I am sure there are lots of articles in the archives here to help me out. I know I can't eat much fruit other than cantaloupes and apple sauce and have been eating a lot of butternut squash soup which contains apples and carrots. I don't think the soup could be causing problems. 
With my DH so sick I didn't follow up as I should have after my diagnosis. I thought I was home free as long as I was GF/SF/DF and taking one entocort a day. With MC and celiac, there is no such thing as home free.
Sheila W
With my DH so sick I didn't follow up as I should have after my diagnosis. I thought I was home free as long as I was GF/SF/DF and taking one entocort a day. With MC and celiac, there is no such thing as home free. Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein