So since my diagnosis of mastocytic colitis, I have had trouble gaining any weight which I won't complain about. I thought I could go back to my regular and have been doing well for the past couple of months minus the fact I still have extreme fatigue, and muscle and joint pain...
I made the mistake of eating a salad with blue cheese dressing yesterday and this afternoon I started feeling terrible. Back with the D and I've also noticed I am peeing like every 15 minutes...just curious if any of you ever do that..
I am beginning to feel like I pay attention to everything too much...but after being so ill and bed ridden with this for 3 months from Mar-Jun. I question every pain...
I hope you are all feeling well, and appreciate hearing from you:)!!!
Another question..sorry..lol
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Yep, when I was reacting, I had very, very little bladder capacity, due the inflammation and bloating. If a reaction happens to cause very high blood pressure, that could also cause frequent urination, but if you should have very high blood pressure, then you should notice dry mouth symptoms. I don't believe that high BP would be a common symptom for someone with ME, however. More than likely, the frequent urination is caused by inflammation.Mendy wrote:Back with the D and I've also noticed I am peeing like every 15 minutes...just curious if any of you ever do that..
In my experience, it's virtually impossible to pay too much attention to the details of one's treatment program, when we're trying to treat MC. The usual problem is not paying enough attention. The symptoms are all there for a reason. The fatigue, muscle, and joint pain are almost surely due to food-sensitivities.
I hope you feel better soon.
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.
Mendy,
Mast cells are in the bladder too and it can get very irritated in flares. Many people with mast cell problems experience excess urination - peeing more than they seem to be drinking. Some with mast cells (like me) do experience pressure diuresis (my pressure goes up rather than down - it's an attempt to raise BP in a reaction but my body overshoots the mark). My guess is your histamine levels are very high. Are you trying to follow the low histamine diet?
Mary Beth
Mast cells are in the bladder too and it can get very irritated in flares. Many people with mast cell problems experience excess urination - peeing more than they seem to be drinking. Some with mast cells (like me) do experience pressure diuresis (my pressure goes up rather than down - it's an attempt to raise BP in a reaction but my body overshoots the mark). My guess is your histamine levels are very high. Are you trying to follow the low histamine diet?
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
Thanks for the response guys. I'm so blessed to have found you all. This nightmare seems some better when I can ask questions and get a response!
My heart sometimes skips a beat during all this too, and I feel lightheaded...I'm assuming from BP issues.
Anyway, MaryBeth, no I was not following the low histamine diet, but seeing how I looked up blue cheese and it states its exceedingly high in histamine you can be sure I will now.
I'm also going to try and find a book on how to go gluten free even though I tested negative for the intolerance I'm hoping to get some relief from the muscle aches in my legs by trying to eliminate some foods.
Please know I appreciate you all, and really do consider you all a blessing. Thanks for not making me feel like an idiot for asking questions. It helps calm me down..
Mendy
My heart sometimes skips a beat during all this too, and I feel lightheaded...I'm assuming from BP issues.
Anyway, MaryBeth, no I was not following the low histamine diet, but seeing how I looked up blue cheese and it states its exceedingly high in histamine you can be sure I will now.
I'm also going to try and find a book on how to go gluten free even though I tested negative for the intolerance I'm hoping to get some relief from the muscle aches in my legs by trying to eliminate some foods.
Please know I appreciate you all, and really do consider you all a blessing. Thanks for not making me feel like an idiot for asking questions. It helps calm me down..
Mendy
Mendy,
Hang in there - you are FAR from an idiot. I have had muscle pains in my legs, which are much relieved since fixing my diet, and I hope you find the same success. It is amazing how exhausting it is to be aching and lightheaded and all those symptoms added up. Please ask whatever you need to, to help get this beast under control for yourself.
Testing negative for gluten intolerance is very common... because the tests are a little less on the ball than our bodies, which really know the score, where gluten is concerned (as well as other intolerances). The second most common intolerance is dairy, but Mary Beth may be pointing you to a more important issue for you, to focus specifically on histamine-containing foods, and those that trigger histamine in the body. (For me - so far - histamines are an issue, but have provoked less severe results than gluten and dairy... I am looking forward to learning more.)
You may want to look into MRT testing, at some point, to refine your foods list. For now - there are great resources on the web these days for gluten-free diets, and this forum is the absolute best for support. Ask whatever you need to do get to the other side... we are all on the same journey.
Hang in there - you are FAR from an idiot. I have had muscle pains in my legs, which are much relieved since fixing my diet, and I hope you find the same success. It is amazing how exhausting it is to be aching and lightheaded and all those symptoms added up. Please ask whatever you need to, to help get this beast under control for yourself.
Testing negative for gluten intolerance is very common... because the tests are a little less on the ball than our bodies, which really know the score, where gluten is concerned (as well as other intolerances). The second most common intolerance is dairy, but Mary Beth may be pointing you to a more important issue for you, to focus specifically on histamine-containing foods, and those that trigger histamine in the body. (For me - so far - histamines are an issue, but have provoked less severe results than gluten and dairy... I am looking forward to learning more.)
You may want to look into MRT testing, at some point, to refine your foods list. For now - there are great resources on the web these days for gluten-free diets, and this forum is the absolute best for support. Ask whatever you need to do get to the other side... we are all on the same journey.
Interesting thread! Your question is very helpful to me because I did not know that the reason I have to pee so often might be related to MC (if I did know I've forgotten). I was never able to have a mast cell test, but do have some of the symptoms that go along with it so it probably has something to do with it. Since the chronic D I'd dealt with for ten years went to a new level last year, prompting the scope resulting in a possible colitis diagnosis (I still don't know what's really going on, but that's another thread), I have had several episodes of not being able to pee. Peeing almost constantly is a lifelong thing. Not being able to pee is new and a little frightening. I told my doctor and she said it must be stress and to try using a muscle relaxant. I was fond of her (I say was because she moved away) but I was not impressed with that answer at all. Sure, being in a flare is stressful, but this not being able to pee thing is not normal for me so I truly don't think it's stress. If anything, I have to pee more often when I'm stressed.
Robbie
Mendy,
I'm very familiar with the lightheaded feeling - it also is a fairly common mast cell symptom. It could be blood pressure related. Do you notice that you get lightheaded when stand/get up rapidly? I recently had a flare and that was one of my annoying symptoms.
It is a good idea to familiarize yourself with mast cell issues. Diet is very important as food is a common trigger, but there are many strange things on the trigger list (certain drugs, exercise, sunlight/heat, PMS etc). My recent flare was triggered by running outside in the heat.
I used to love blue cheese. A few years ago I went to a party and enjoyed a glass of champagne and had blue cheese (and who knows what else). Within about an hour of eating I was vomiting uncontrollably. I was sick for a good 15 hours, with vomiting intially and then dry heaves and diarrhea. At that time I knew nothing about mast cells or histamine, but the combination of champagne and blue cheese (aged, fermented, yeast and alcohol) was so toxic that I have zero temptation to ever consume either again.
You may need to see an allergist who knows about mast cell issues. Your symptoms are concerning.
Hope you feel better soon.
Mary Beth
I'm very familiar with the lightheaded feeling - it also is a fairly common mast cell symptom. It could be blood pressure related. Do you notice that you get lightheaded when stand/get up rapidly? I recently had a flare and that was one of my annoying symptoms.
It is a good idea to familiarize yourself with mast cell issues. Diet is very important as food is a common trigger, but there are many strange things on the trigger list (certain drugs, exercise, sunlight/heat, PMS etc). My recent flare was triggered by running outside in the heat.
I used to love blue cheese. A few years ago I went to a party and enjoyed a glass of champagne and had blue cheese (and who knows what else). Within about an hour of eating I was vomiting uncontrollably. I was sick for a good 15 hours, with vomiting intially and then dry heaves and diarrhea. At that time I knew nothing about mast cells or histamine, but the combination of champagne and blue cheese (aged, fermented, yeast and alcohol) was so toxic that I have zero temptation to ever consume either again.
You may need to see an allergist who knows about mast cell issues. Your symptoms are concerning.
Hope you feel better soon.
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
I saw an allergist here in our area but unfortunetely he is still learning about it like we all are. All the common food and environment allergies, with the exception of dust, I was negative for. So I'm not real allergic to anything..which is odd.
I am going to try and see where the closest specialist to Bowling Green, Ky is. Hopefully I will get some answers. I'm not a fan of feeling the way I do. I can't enjoy life:(!
I am going to try and see where the closest specialist to Bowling Green, Ky is. Hopefully I will get some answers. I'm not a fan of feeling the way I do. I can't enjoy life:(!
Mendy,
Traditional allergy testing is not what is used to determine sensitivities for mast cell patients. I initially had some allergy testing done and all of my tests were negative too. Sounds like your allergist diesn't fully understand - have you shared some articles with him?
Mary Beth
Traditional allergy testing is not what is used to determine sensitivities for mast cell patients. I initially had some allergy testing done and all of my tests were negative too. Sounds like your allergist diesn't fully understand - have you shared some articles with him?
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
Hi Mendy,
Keep asking questions, we learn together through our shared experiences!
As I mentioned before, you and I share the same diagnosis. I have learned sooooo much about mast cell issues since my diagnosis and a good deal of it has been thanks to this board. Part of that learning curve has been gaining the understanding that some patients with ME will have only GI symptoms while others actually have more of a systemic issue. In my GI doc's practice he has just a handful of ME patients, and of those I am the only one who also is presenting with systemic issues. So all of that is to say that it's wise to take note of accompanying symptoms as you may have more of a systemic issue rather than one just isolated to your gut. Having said that, I agree you don't want to hyperfocus on every little "hiccup" your body experiences, but you do want to take note of changes, such as the recent change in your urinary routine.
I also starting to experience urinary issues over the past year. I've had spells of horrendous bladders spasms, urgency with urinating, pelvic pain, etc. As Mary Beth said, urinary involvement is not unusual for those with systmeic mast cell issues as the bladder is a mast cell rich environment. Here is a link that will provide a quick overview of the bladder and mast cell relationship: http://www.microbugs.org/showabstract.php?pmid=9629289
My suggestion is that you start a journal noting your symptoms. Look for trends, triggers, etc. You might be able to figure out some of your triggers (food and non-food) and thereby minimize your reactions.
Best,
Julie
Keep asking questions, we learn together through our shared experiences!
As I mentioned before, you and I share the same diagnosis. I have learned sooooo much about mast cell issues since my diagnosis and a good deal of it has been thanks to this board. Part of that learning curve has been gaining the understanding that some patients with ME will have only GI symptoms while others actually have more of a systemic issue. In my GI doc's practice he has just a handful of ME patients, and of those I am the only one who also is presenting with systemic issues. So all of that is to say that it's wise to take note of accompanying symptoms as you may have more of a systemic issue rather than one just isolated to your gut. Having said that, I agree you don't want to hyperfocus on every little "hiccup" your body experiences, but you do want to take note of changes, such as the recent change in your urinary routine.
I also starting to experience urinary issues over the past year. I've had spells of horrendous bladders spasms, urgency with urinating, pelvic pain, etc. As Mary Beth said, urinary involvement is not unusual for those with systmeic mast cell issues as the bladder is a mast cell rich environment. Here is a link that will provide a quick overview of the bladder and mast cell relationship: http://www.microbugs.org/showabstract.php?pmid=9629289
My suggestion is that you start a journal noting your symptoms. Look for trends, triggers, etc. You might be able to figure out some of your triggers (food and non-food) and thereby minimize your reactions.
Best,
Julie