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Hi everyone.
I just wanted to check in and to let you know that I don't have parasites. I talked to the GP's office today and they still do not have the test results in on the C. diff test yet. I am still living in the bathroom and the fecal incontinence seems to be getting more frequent. Whereas last year it may have happened a handful of times, since February it is a nightly (sometimes 2 times in a night) occurence.
Tex here is one for the books, last night I was just thinking about what to make the family for dinner and immediately had to go. Now I had not gone since about 2:30 in the afternoon and then it was just like boom - food - conference call. As I was sitting on the pot, I had to laugh b/c it was like I can't eat anything but now I can't even think about food either.
I am really hoping this new GI will have some answers. I plan on asking him about mast cells b/c whenever I eat dinner I always get a running nose. Hmmmm.
I hope that everyone is doing well.
Love,
Rose
Just Checking In
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Rose,
Hmmmmmmm. The lab may be trying to set a record with that culture test. I'm beginning to wonder if maybe they might have forgotten to notify your doctor of the results. It's been slightly over a week now, hasn't it?
Concerning the effects of "thinking about food", maybe it was just "almost time", and it didn't take much to complete the "initialization". Surely you haven't become psychosomatically conditioned.
That would be a heck of a note, if it happened.
If you're eating hot, spicy, foods, then it would not be surprising to see a runny nose, but if you're eating bland foods, then that could certainly be a suspicious indication of possible mast cell involvement. I agree - hmmmmmmm.
Thanks for the update.
Love,
Tex
Hmmmmmmm. The lab may be trying to set a record with that culture test. I'm beginning to wonder if maybe they might have forgotten to notify your doctor of the results. It's been slightly over a week now, hasn't it?
Concerning the effects of "thinking about food", maybe it was just "almost time", and it didn't take much to complete the "initialization". Surely you haven't become psychosomatically conditioned.
That would be a heck of a note, if it happened.If you're eating hot, spicy, foods, then it would not be surprising to see a runny nose, but if you're eating bland foods, then that could certainly be a suspicious indication of possible mast cell involvement. I agree - hmmmmmmm.
Thanks for the update.
Love,
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.
Tex,
It has been 1 week today that I gave the hospital my "sample." The whole reason that he wanted me to go to the hospital was that it was quicker than having the lab at his office process it. Evidently the hospital must have used a carrier pigeon. I called the GP's office b/c I didn't want the test results to fall through the cracks so hopefully his nurse will track it down.
As far as what I eat, I don't eat anything spicy, I can't handle it, that's why I mentioned it. It had just occurred to me that every time I eat dinner (which is usually cooked veggies and fish or tuna) I get a runny nose, I mean it is running down my face. It is just a thought.
I guess it was just that time of day for me yesterday b/c I am thinking about food (ok peanut M & M's) and I don't have to make a mad dash - Yet!!!
Love,
Rose
It has been 1 week today that I gave the hospital my "sample." The whole reason that he wanted me to go to the hospital was that it was quicker than having the lab at his office process it. Evidently the hospital must have used a carrier pigeon. I called the GP's office b/c I didn't want the test results to fall through the cracks so hopefully his nurse will track it down.
As far as what I eat, I don't eat anything spicy, I can't handle it, that's why I mentioned it. It had just occurred to me that every time I eat dinner (which is usually cooked veggies and fish or tuna) I get a runny nose, I mean it is running down my face. It is just a thought.
I guess it was just that time of day for me yesterday b/c I am thinking about food (ok peanut M & M's) and I don't have to make a mad dash - Yet!!!
Love,
Rose
Rose,
There are faster ways to diagnose C. diff, but the culture tests that are normally used, require a minimum of 4 days, for a reliable interpretation of the test, and I believe that most labs report in 4 or 5 days.
It sure sounds as though you are having an allergic reaction to food, (of some type), so I would say that mast cells are almost definitely playing a part in your reactions. If your new GI doc is unfamiliar with this concept, you may need to visit with a good allergist/immunologist, to get some guidelines on how to proceed.
Speaking of the thought of food possibly causing problems, the father of one of my uncles, developed some sort of digestive system problem in his later years, and just the smell of food, while it was being cooked, caused him to become ill, (nausea, vomiting, etc.). This was many years ago, so I don't remember many of the details, but I'm sure that back in those days, the doctors were stumped by the problem, (as if they wouldn't be now).
Love,
Tex
There are faster ways to diagnose C. diff, but the culture tests that are normally used, require a minimum of 4 days, for a reliable interpretation of the test, and I believe that most labs report in 4 or 5 days.
It sure sounds as though you are having an allergic reaction to food, (of some type), so I would say that mast cells are almost definitely playing a part in your reactions. If your new GI doc is unfamiliar with this concept, you may need to visit with a good allergist/immunologist, to get some guidelines on how to proceed.
Speaking of the thought of food possibly causing problems, the father of one of my uncles, developed some sort of digestive system problem in his later years, and just the smell of food, while it was being cooked, caused him to become ill, (nausea, vomiting, etc.). This was many years ago, so I don't remember many of the details, but I'm sure that back in those days, the doctors were stumped by the problem, (as if they wouldn't be now).
Love,
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.
Man, smelling food, throwing up.......... reminds me of my first pregnancy. HaHa
Didn't know that happened with other problems. It's really a big bummer. You should at least have the pleasure of eating it first.
Love, Shirley
Didn't know that happened with other problems. It's really a big bummer. You should at least have the pleasure of eating it first.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Tex,
From what I was reading about mast cells and I may be wrong about this, but I think fish has to be fresh. So wouldn't the tuna (canned) have the histamine? From the list of foods that was on the link that is the only thing that I would question. The veggies and fruit that I eat are all on the safe list.
The mast cell thing is so confusing, but I am trying to absorb it.
Love,
Rose
From what I was reading about mast cells and I may be wrong about this, but I think fish has to be fresh. So wouldn't the tuna (canned) have the histamine? From the list of foods that was on the link that is the only thing that I would question. The veggies and fruit that I eat are all on the safe list.
The mast cell thing is so confusing, but I am trying to absorb it.
Love,
Rose
Rose,
I believe you're right about the fish. The problem is that if you look at enough various lists of "recommended" and "not recommended" foods, there are precious few foods that are really free and clear of the problem. A recommended list appears, (to me at least), to contain the least offensive foods, (IOW, virtually all of them have the potential to cause problems, but some are less likely than others). It is confusing, no question about that.
Love,
Tex
I believe you're right about the fish. The problem is that if you look at enough various lists of "recommended" and "not recommended" foods, there are precious few foods that are really free and clear of the problem. A recommended list appears, (to me at least), to contain the least offensive foods, (IOW, virtually all of them have the potential to cause problems, but some are less likely than others). It is confusing, no question about that.
Ain't that the truth.shirley wrote:It's really a big bummer. You should at least have the pleasure of eating it first.
Love,
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.
Shirley,
I agree, if I am going to have an explosion in my office than I want to enjoy the food that put me in there.
Tex,
I feel like I am on a roller coaster. Yesterday I only went 4 times w/o any explosions or water d and no leaking last night. I ate the same thing I eat every day. It is so amazing and confusing how one day it is a constant race to the office and another no big deal. Crazy, Crazy, Crazy.
Love,
Rose
I agree, if I am going to have an explosion in my office than I want to enjoy the food that put me in there.
Tex,
I feel like I am on a roller coaster. Yesterday I only went 4 times w/o any explosions or water d and no leaking last night. I ate the same thing I eat every day. It is so amazing and confusing how one day it is a constant race to the office and another no big deal. Crazy, Crazy, Crazy.
Love,
Rose
Rose,
You're right, of course. It's amazing how the same disease can affect us all so differently, and cause such a variety of symptoms and reactions.
If your doctor hasn't received the results from that C. diff test yet, I think I would consider trying to submit another test sample today, (since it's Friday). That way, you might have some results by Tuesday, (in case they never find the results of the first one). As overdue as the results of the first test are, I'm not sure that I would trust the results, anyway. Something has definitely gone awry, or someone has dropped the ball, somewhere along the line.
Love,
Tex
You're right, of course. It's amazing how the same disease can affect us all so differently, and cause such a variety of symptoms and reactions.
If your doctor hasn't received the results from that C. diff test yet, I think I would consider trying to submit another test sample today, (since it's Friday). That way, you might have some results by Tuesday, (in case they never find the results of the first one). As overdue as the results of the first test are, I'm not sure that I would trust the results, anyway. Something has definitely gone awry, or someone has dropped the ball, somewhere along the line.
Love,
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.
Rose,
Do you have gurgling and gas and bloating as well as the D? I was tested for fructose intolerance and it was very positive. Long story but I can't eat any fruit at all. I get gurgling, gas, and bloating and muscle aches. I still have the D without the fruit but am now on an extremely restricted diet eliminating even the veggies. I eat fatty meats and have broken down and added buckwheat cereal for carbs and it's working. No normans yet but BMs seem to be getting thicker every day. It's boring but maybe if my gut heals on this diet maybe I will be able to add back in some things. I hope and pray I will get to add back in some things. I feel for you too. This is no fun.
Pat
Do you have gurgling and gas and bloating as well as the D? I was tested for fructose intolerance and it was very positive. Long story but I can't eat any fruit at all. I get gurgling, gas, and bloating and muscle aches. I still have the D without the fruit but am now on an extremely restricted diet eliminating even the veggies. I eat fatty meats and have broken down and added buckwheat cereal for carbs and it's working. No normans yet but BMs seem to be getting thicker every day. It's boring but maybe if my gut heals on this diet maybe I will be able to add back in some things. I hope and pray I will get to add back in some things. I feel for you too. This is no fun.
Pat
Pat,
That is the story of my life. I always have gurgling, bloating, nausea and as far as gas goes, lets just say there is a green cloud over my house. LOL. My dh says I just breath air and I am burping and/or farting. I laugh and it just makes it worse. How did you test for frutose intolerance?
Tex,
I have put a call into the hospital to see what the hold up is. If they lost it I think that I will wait until I see the new GI on Tuesday morning and bring it up with him.
Love,
Rose
That is the story of my life. I always have gurgling, bloating, nausea and as far as gas goes, lets just say there is a green cloud over my house. LOL. My dh says I just breath air and I am burping and/or farting. I laugh and it just makes it worse. How did you test for frutose intolerance?
Tex,
I have put a call into the hospital to see what the hold up is. If they lost it I think that I will wait until I see the new GI on Tuesday morning and bring it up with him.
Love,
Rose
If you read the support forums for Crohn's, UC, MC, celiac, etc., you will see that the gurgling phenomenon is pretty much unique to the IBDs, and gas and bloating is a common symptom for people with celiac disease and/or IBDs. Foul-smelling, (gray to green-tinted), stools, exhaust gas, etc., are primary symptoms of gluten-sensitive enteropathy.
If I had to make a guess, I'd guess that they sent the report to the wrong place.
Love,
Tex
If I had to make a guess, I'd guess that they sent the report to the wrong place.
Love,
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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faithberry
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Rose,
My booklet from the Allergy Unit at the Royal Prince Alfred Hospital in Australia classifies tuna as high in amines (that includes histamines). That's 'fresh' tuna. It says all canned or frozen fish contain very high amine levels as well. If you nose is running down your face, that seems a pretty convincing sign of some type of allergic reaction to the fish, not necessarily IgE. Looks like you have too much histamine floating around your blood stream. Good luck getting your test results, but you might want to try a trial run of no fish.
I first noticed my problems when I began itching after eating fish. Gosh, I feel like the fact I even brought histamine and mast cells up is causing a tidal wave of problems for people here. If it's not mast cells, it could be the problem with the histamine processing enzyme diamine oxidase, which can get damaged in IBD. But doctors aren't hip to that either.
I'm so sorry you are having to deal with this Rose.
Certain food smells definitely make me nauseous!
My booklet from the Allergy Unit at the Royal Prince Alfred Hospital in Australia classifies tuna as high in amines (that includes histamines). That's 'fresh' tuna. It says all canned or frozen fish contain very high amine levels as well. If you nose is running down your face, that seems a pretty convincing sign of some type of allergic reaction to the fish, not necessarily IgE. Looks like you have too much histamine floating around your blood stream. Good luck getting your test results, but you might want to try a trial run of no fish.
I first noticed my problems when I began itching after eating fish. Gosh, I feel like the fact I even brought histamine and mast cells up is causing a tidal wave of problems for people here. If it's not mast cells, it could be the problem with the histamine processing enzyme diamine oxidase, which can get damaged in IBD. But doctors aren't hip to that either.
I'm so sorry you are having to deal with this Rose.
Certain food smells definitely make me nauseous!
Faith
LC (in remission)
LC (in remission)
Rose,
Hydrogen breath test for fructose is the test I did. It was done in my 2nd GI doc's office. I drank a small cup of pure fructose liquid and then every 30 min or so I had to blow into this device. They recorded the number. If it went over 20 then you are dx'd as fructose intolerant. Mine went up to 113. I was so sick from drinking that stuff. It made me so nauseous and I ran to to toilet the whole time. My gas, gurgling, bloating, and 80% of my muscle aches were gone when I quit eating fruit and other sugars including the alcohol sugars, sorbitol, mannitol, all the -ols. Didn't effect the D though. I was still eating gluten and dairy at the time. Now that I am free of all that I am much better. Not well yet but the terrible foul smell is gone. The large volume of D is gone. I haven't had an accident in quite awhile ( I had too many to count in public and private). The frequency of D is not as often. I still have a lot of healing to do. I am actually up to 103 lbs. Yahoo!
I've been hovering at 100 - 101. Even 2 lbs helps.
I was told by the person who administered the test that I could probably add back in some fruit after 2 months but it didn't work for me. I am hoping when everything is healed that I will be able to add some back in.
Hope this info helps you. This may not be what you have but it couldn't hurt to have the test or do a trial of no fructose ingestion. This includes alcohol. Sorry.
I used to like to have a glass of wine or margarita with my DH but sadly no more for now. When I have even just tasted some of his I immediately feel and hear the gurgling.
Pat
Hydrogen breath test for fructose is the test I did. It was done in my 2nd GI doc's office. I drank a small cup of pure fructose liquid and then every 30 min or so I had to blow into this device. They recorded the number. If it went over 20 then you are dx'd as fructose intolerant. Mine went up to 113. I was so sick from drinking that stuff. It made me so nauseous and I ran to to toilet the whole time. My gas, gurgling, bloating, and 80% of my muscle aches were gone when I quit eating fruit and other sugars including the alcohol sugars, sorbitol, mannitol, all the -ols. Didn't effect the D though. I was still eating gluten and dairy at the time. Now that I am free of all that I am much better. Not well yet but the terrible foul smell is gone. The large volume of D is gone. I haven't had an accident in quite awhile ( I had too many to count in public and private). The frequency of D is not as often. I still have a lot of healing to do. I am actually up to 103 lbs. Yahoo!
I've been hovering at 100 - 101. Even 2 lbs helps.I was told by the person who administered the test that I could probably add back in some fruit after 2 months but it didn't work for me. I am hoping when everything is healed that I will be able to add some back in.
Hope this info helps you. This may not be what you have but it couldn't hurt to have the test or do a trial of no fructose ingestion. This includes alcohol. Sorry.
I used to like to have a glass of wine or margarita with my DH but sadly no more for now. When I have even just tasted some of his I immediately feel and hear the gurgling.Pat
Pat,
I don't get any gurgling after I drink wine or fruit, except for bananas. I'll ask the GI on Tuesday about this test. Good job gaining the weight. I am down to 104 and my dh is not pleased. B/f I was not losing any weight, but now I have lost a total 16 lbs in the past 3 months.
Faith,
Thank you for the information on fish. Right now that is the only protein I can eat. I don't eat red meat and chicken sends me to my office. I can't eat beans so that leaves fish, but I will try and incorporate chicken back in my diet.
Tex,
I believe you are correct about my test results. The hospital did not call me back yesterday and I am going to try them again on Monday (Kendyl had a check-up yesterday so by the time I got home the lab techs had gone). I'm so angry at this b/c now I will have to do some more collecting I'm sure and that is not pleasant.
Love,
Rose
I don't get any gurgling after I drink wine or fruit, except for bananas. I'll ask the GI on Tuesday about this test. Good job gaining the weight. I am down to 104 and my dh is not pleased. B/f I was not losing any weight, but now I have lost a total 16 lbs in the past 3 months.
Faith,
Thank you for the information on fish. Right now that is the only protein I can eat. I don't eat red meat and chicken sends me to my office. I can't eat beans so that leaves fish, but I will try and incorporate chicken back in my diet.
Tex,
I believe you are correct about my test results. The hospital did not call me back yesterday and I am going to try them again on Monday (Kendyl had a check-up yesterday so by the time I got home the lab techs had gone). I'm so angry at this b/c now I will have to do some more collecting I'm sure and that is not pleasant.
Love,
Rose