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Gail wrote:Seems weird that my head/sinuses and my stomach/intestines are all tied together to make me feel so bad.
They're all lined with epithelial tissues so they're all loaded with mast cells. I wish I knew of a solution, but trying alternate foods may prove to be helpful.
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.
Thanks, Tex. Will continue to fight thru it. Since both have mast cells, seems to be mast cell issue and good to have that identified, even if coping with it is not any easier.
Very fresh chicken is OK, but it quickly gains histamine as it ages (much like fish), even when refrigerated. Because of that, chicken is often a high-histamine food. Many of us avoid it for that reason, or at least keep chicken frozen at all times that we're not cooking or eating it.
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 have come to the conclusion that mast cell is what I am and have been dealing with lately. I need to rid the excess histamine as best as possible.
I am trying to approach it as going as bland as possible, cooking and eating protein immediately, rotating the rice and potatoes, getting adequate rest as best as possible and not getting out into the heat as much as I'd like to. Appears heat can stir up the release of histamine just as easily as food antigens do...incredible...damned if you do and damned if you don't, that's how I feel about this situation right now.
Today I don't itch externally on the neck nearly as bad as I did yesterday and I was able to have one bathroom dash before leaving for work (thankfully). So far after being at work I haven't had much urgency, it must be all the moving around prior and leading up to leaving for work that gets my guts all worked up. Good grief!!
Unfortunately motto for now while heat index is high is "less movement the better".
I sure feel for all you that are going thru this same type of scenario it is absolutely Zero fun!
Hugs
E
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
I do not understand how any of you go to work or take care of kids and families. Hats off to all of you that do that!!!!!! I can barely take care of me and I feel like crap. Yesterday was so bad. Felt "the urge" while standing in the kitchen, turned towards the bathroom and took about 5 steps and with that the rest was history as I held my shorts tightly against my body and ran to the bathroom. What a big frickin' mess!!! I peeled my clothes off of me without ruining my shoes. Sat there on the toilet so depressed and waited for the rest to come out before climbing in the shower. My daughter was leaving town and had loaded her car. She found me in the bathroom, kissed me on the top of the head and sympathized with me and I told her to leave as I needed a shower. Then once in the shower, the Big D started all over again and I stood in my shower and made a huge mess there. (Don't you all just love all this graphic info????) I was so depressed as I stood there waiting for it to finish so I could finally clean myself up, that tears ran down my face. Finally got out of shower and dried off, put on my lovely diaper and a sundress (as it would be easier to access that diaper with only a sundress on) and by then I was shivering. I wrapped up in a blanket and curled up in my recliner and tried to calm down. What a wonderful way to begin my morning at 6:30 a.m. I did NOTHING the rest of the day. No more attacks. Never got sick again. But once again, the heat here in Atlanta is so awful that just going out to get the mail makes me sick and the day before I had to go to the store to buy much-needed food.
The idea that chicken goes bad or causes histamines to develop is new to me. So will cook one piece at a time instead of preparing a soup or stew with it. The beef I cooked yesterday was wonderful and my stomach loved every bite of it, also with white potatoes and carrots. It is my go-to food as nothing else works. I swear, I think I'll just eat that and nothing else. I've been trying to read more on mast cells as the idea of it being my source of problems concerns me. I absolutely will NOT go thru any intestinal tests to find out so there better be blood tests for this. Finding anyone in metro Atlanta who is knowledgable seems to be an issue right now but I am searching. I cannot drive long distances in this heat and traffic or I will be sick in my van. I'm hoping I can get my family doctor to run some kind of mast cell test on me and prescribe some kind of drugs to get me some help.
I agree with Erica about the mast cell problems - we both seem to be fighting the same thing but at least I don't have to go to work. Bless you Erica for making it to work!!!!!
Your scenario makes me shake my head Gail, so sad to say I have been there done that...When we don't know what or why things happen to us but understand we have to live a certain way now it really wears a person out trying to get thru all the what-fors as they arise. I have learned so much my head feels like popping at times.
Luckily I have air conditioning at home and at work, but in between is a 'crap shoot'!! LOL I crack myself up Only funny when you don't feel those oh so yucky symptoms of gas, pain, pressure.
Here's a scenario for anyone....why is it that you can feel like you are going to clean yourself out in a frenzy hurry only to notice a Norman in the bowl???? Where...how...Huh!! I went thru all that pain and agony getting myself to the bathroom on time and writhing with bristol 6's and a Norman appears in it all....Next day...crazy drive to work as I get half way there the same ole crampy, airy, "oh No" feeling comes flushing over me....I barely make it to the work restroom and it is a mix of Bristol 6 and Norman!! What the heck Now today it is after lunch and I am starting to have pencil Normans...Something is changing within, but it is has to be the worse feeling of change I have ever had. I have no explanation as to all this, perhaps the histamine is making its way out of the body and my guts are feeling like they have a chance again like they did way back before February!
Can only hope I am making a move for the better this Summer.
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
The beef I cooked yesterday was wonderful and my stomach loved every bite of it, also with white potatoes and carrots. It is my go-to food as nothing else works. I swear, I think I'll just eat that and nothing else.
The few food regimen is a good way to go. I ate 3 foods for about 10 weeks early on and had a lot of improvement plus it removes the stress of life.
Gail I can't remember if you are on Entocort or Uceris but you might want to consider them if they allow you to get to the grocery. I'm not one to push drugs but if you are struggling to get food sometimes the drugs help.
Had to log back in to lend support-been there, done that too. The last time it happened earlier this year I was picking my son up at high school. We were driving home and I was in that panic mode in my head knowing I couldn't hold it and I couldn't. My son was so understanding and I was almost in tears. To top it off, it's the one and only day my husband is home early from work. I scooted past the living room and said I don't want to talk about it-cleaned up and he never brought it up.
I still worry especially if we go out with friends and food is involved. If it's just us then I don't worry as much. I think I've just gotten used to it and most of the time things are ok but then something comes out of left field and knocks you down. You do the best you can and take it day by day I guess.
Gail-I know you have some good days coming!
Erica-it is weird with the disconnect with how you feel and then what "comes out". I can usually tell pretty early in the day if it will be good/bad. My motility can be great (and boy can I feel the difference) or not so great no matter what I do.
Stay cool everyone. It's yet another hot, hot day in Texas
So that there are no histamine issues I cook meats in large lots and cut up and freeze individual portions and bring them out when I want to eat them and microwave the individual portions.
Thanks, everyone, for help and for making me laugh and for knowing that there are no subjects we can't discuss. I feel like "THE QUEEN OF BABY POO" most of the time and then suddenly, everything will start working just fine and I'll think, "hey, I'm doing so much better". Yes, I am on Entocort and have been for a year. I've had a few months that I was off of it but that was it. My doctor would probably not agree to this but I'm not listening to her any more, I am listening to my body. She's the one who told me to eat a normal diet, except for gluten/dairy. If I did that, I'd be dead by now.
I have absolutely no warning with my intestines. None. All of a sudden, I know I need to take off running and that's it. If I am in a car, there is no time to find a bathroom. So I try to go nowhere. I've actually made it to a couple concerts and Broadway shows in the past 12 months but I do not ever go to anyone's house or out to dinner. I am a hermit. It is just too much to explain. And quite frankly I never feel like going anywhere.
Slightly nauseated all the time, hungry so often because food flies thru me, make myself sick from the way I am, I think I must smell bad but my daughter (who is so bluntly honest) swears she never smells me so I am so thankful. I guess I should be so thankful that this only got this bad after I gave up on working and retired early. If I had still tried to work, it would never have made it. It was already so bad that I knew every gas station all the way on that 45 minute drive to work. Now I'm lucky to make it 2 miles to the store and back.
I laugh when the doctor says "and are your bowel movements normal in size and consistency?" I want to wring her neck. Hell, no, nothing that comes out down there is normal, never has been in 12 months. No Entocort, no diarrhea medicine, nothing makes it seem normal so I guess this is the NEW NORMAL.
Sense of humor is all we have sometime as our dignity is gone. I lost it completely when I was in the hospital for 6 days being diagnosed with this. There is no dignity when diarrhea is so bad that I think the nursing staff is fighting over who is going to have to come in to my room and take care of me because I am so deathly sick and such a mess. Finally got them to let me stand in a shower to clean up. But stripping the bed/my clothes/cleaning the floor was a constant so I lost my dignity then.
Only funny when you don't feel those oh so yucky symptoms of gas, pain, pressure. 
Now today it is after lunch and I am starting to have pencil Normans...Something is changing within, but it is has to be the worse feeling of change I have ever had. I have no explanation as to all this, perhaps the histamine is making its way out of the body and my guts are feeling like they have a chance again like they did way back before February!
