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Hello,
First, I wanted to say thanks for earlier advice before my conference. Everything went well Praise the Lord! Eating out was a nightmare---but I was very careful and didn't end up with any bathroom issues at all. In fact, I had been fine since returning. I had a few days where I didn't go at all and then this morning I am having issues again. Not horrible, but I am definitely reacting to something. I just very much would like to make it for two full weeks without reacting to something.
I am so tired of this! I know you can all relate. This tends to be my "go to" place when I am discouraged and I do lots of reading on previous posts and so forth. Today for whatever reason, I am feeling particularly discouraged. Maybe it's the rainy weather we're having! Sometimes the more I read, the more my head spins. This morning I was reading, I keep questioning the Mast Cell thing. Can I ask what other symptoms those of you who have mast cell problems have? I am still dealing with an itchy rash on my legs which responds fairly well to claritin and a hydrocortisone cream if I stay consistent with it. But it doesn't ever go completely away. Also, when I get out of the shower I often times will get red spots over my stomach and down the inside of my arms. Those don't usually itch, however. I do get light-headed from time to time and sometimes dizzy---although not very often. And I also have GERD symptoms from time to time.
Since my tummy issues ebb and flow so much I wonder if it's tied to the claritin since I take it on and off depending how my rash is doing. This makes me question mast cells. Do I need to go to a doctor to check for a diagnosis or can I just try taking anti-histamines for an extended period of time to see if that works? And which anti-histamines would be best to use?
And will that work or would I also need to try a low-histamine diet with it? This idea freaks me out because I'm already having a hard enough time getting in enough calories. I can't afford to lose any more weight!
Are mast cell issues disorders also autoimmune in nature?
I maybe haven't given enough time if it is in fact a gluten rash---whatever the technical term for that is.... But I don't know how long that takes to clear up. I've read conflicting stories on that.
I look back over my life and hate that I took my health for granted for so many years. I feel like I'm never going to figure it all out. Sorry. I usually try to stay positive, but I just don't seem to have it in me today. I'm just feeling like I wanna give up. And then I feel guilty because so many of you have so much worse! I know it could be so much worse.....and I usually try to keep that as my perspective; but today, all I can think is that it could also be SO much better :(
Melanie
How to figure this out?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Melanie,
I'll leave the explanation of other symptom to those who have the symptoms, but I'll address some of your other questions. Those symptoms do sound as though they may be connected with mast cell problems, however.
If you think you have a mast cell problem, then yes, it would be best to modify your diet, in addition to taking antihistamines. Most doctors have no working knowledge of mast cell issues, so unless you can see one of the experts on our list, you would probably be better off trying treatments on your own. That way at least you won't have to put up with a doctor who tries to tell you that "it's all in your head".
If you have dermatitis herpetiformis, yes, it can take years for the rash to disappear. You can get a prescription for dapsone, to bring it under control faster.
While mast cell issues in general are not autoimmune diseases, IMO, mast cell problems are an essential ingredient in the development of all autoimmune diseases.
We all have down days, where we have trouble keeping an optimistic outlook. Sometimes we just have to take life one day at a time, and trust that tomorrow will be better.
Tex
I'll leave the explanation of other symptom to those who have the symptoms, but I'll address some of your other questions. Those symptoms do sound as though they may be connected with mast cell problems, however.
If you think you have a mast cell problem, then yes, it would be best to modify your diet, in addition to taking antihistamines. Most doctors have no working knowledge of mast cell issues, so unless you can see one of the experts on our list, you would probably be better off trying treatments on your own. That way at least you won't have to put up with a doctor who tries to tell you that "it's all in your head".
If you have dermatitis herpetiformis, yes, it can take years for the rash to disappear. You can get a prescription for dapsone, to bring it under control faster.
While mast cell issues in general are not autoimmune diseases, IMO, mast cell problems are an essential ingredient in the development of all autoimmune diseases.
We all have down days, where we have trouble keeping an optimistic outlook. Sometimes we just have to take life one day at a time, and trust that tomorrow will be better.
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.
Hi Melanie,
Glad your conference went well.
I'm not sure if you are on any drugs or not or working at this naturally? The dizziness was pretty severe for me, i.e. much worse than WD. It was so severe that I searched every historical thread that mentioned dizziness. Once you've done a certain number of posts you can search threads. I had dizziness and lightheadedness from dawn to dusk for about 8 weeks prior to getting Entocort. Dizziness can also be a side effect of Entocort. I also had dizziness and lightheadedness the first two months on Entocort. Taking a B multi vitamin w/ folic acid may help with brain issues. I also started licking coconut oil off of spoon several times a day as mentioned by poster in a previous thread regarding dizziness. The dizziness may also be tied out to a food that you are eating. For me (and this may very well be individualistic to me) eating grains caused more dizziness such that it was tough to work during the day. I ended up moving grains to the evening and had less dizziness during the work day.
As my gut healed the dizziness and lightheadedness went away. I wish I could give you something more specific to help with the brain issues but mine seemed to be tied out to gut healing....as my gut healed my brain got better.
Best wishes, Brandy
Glad your conference went well.
I'm not sure if you are on any drugs or not or working at this naturally? The dizziness was pretty severe for me, i.e. much worse than WD. It was so severe that I searched every historical thread that mentioned dizziness. Once you've done a certain number of posts you can search threads. I had dizziness and lightheadedness from dawn to dusk for about 8 weeks prior to getting Entocort. Dizziness can also be a side effect of Entocort. I also had dizziness and lightheadedness the first two months on Entocort. Taking a B multi vitamin w/ folic acid may help with brain issues. I also started licking coconut oil off of spoon several times a day as mentioned by poster in a previous thread regarding dizziness. The dizziness may also be tied out to a food that you are eating. For me (and this may very well be individualistic to me) eating grains caused more dizziness such that it was tough to work during the day. I ended up moving grains to the evening and had less dizziness during the work day.
As my gut healed the dizziness and lightheadedness went away. I wish I could give you something more specific to help with the brain issues but mine seemed to be tied out to gut healing....as my gut healed my brain got better.
Best wishes, Brandy
I am not on any prescription drugs. Just antihistamines from time to time. I definitely prefer to do this naturally.
I try not to go for long periods without food. I am underweight so I can't afford to skip meals. I probably am not getting enough calories in at the end of the day but I don't go for too long without eating something.
I do have low blood pressure. If I stand quickly I will black out for a bit. But that's been the case my whole life. Could that also cause periods of being light headed just randomly---without rising too quickly?
I try not to go for long periods without food. I am underweight so I can't afford to skip meals. I probably am not getting enough calories in at the end of the day but I don't go for too long without eating something.
I do have low blood pressure. If I stand quickly I will black out for a bit. But that's been the case my whole life. Could that also cause periods of being light headed just randomly---without rising too quickly?
Today I am SO dizzy. I was walking around the grocery store and it felt like I was in a different world. I am on cromolyn sodium for my 'mast cell activation disorder' so i dont know if its from the meds. Im also having some tummy trouble so I am now thinking both issues are from the med. Anyways,
my mast cell symptoms are red rashes on my arms, chest, rib cage and stomach. It looks like a heat rash and does not itch. The rash on my legs looks like it would be razor burn but, it's not. I itch when I work out and I flush when i drink alcohol. I also have skin writing-like it i scratch something on my chest, the scratch stays for a long time. I have other symptoms but, since i feel kind of out of it right now and cant think...
I had an appt with Dr hamilton at brighams a few weeks ago and he is the one helping me with meds etc. However, i have another appt in a few weeks with one of the head Mast Cell dr's there, dr akin-that appt cant come soon enough!
Jenny
my mast cell symptoms are red rashes on my arms, chest, rib cage and stomach. It looks like a heat rash and does not itch. The rash on my legs looks like it would be razor burn but, it's not. I itch when I work out and I flush when i drink alcohol. I also have skin writing-like it i scratch something on my chest, the scratch stays for a long time. I have other symptoms but, since i feel kind of out of it right now and cant think...
I had an appt with Dr hamilton at brighams a few weeks ago and he is the one helping me with meds etc. However, i have another appt in a few weeks with one of the head Mast Cell dr's there, dr akin-that appt cant come soon enough!
Jenny