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I'm so glad the Benadryl cream is helping, Zizzle!
As far as mast cell treatment:
There are only a few drugs which require a prescription: Gastrocrom, Singulair, and Ketotifen (not available in the U.S.) Since all the rest are available OTC, I'd suggest that you try some of them first to see if you respond. Of course, you can always try a low-histamine diet, too.
I've never noticed flushing, either. My most obvious and immediate reaction has been to get mouth sores. Not many people get them from what I can tell, though. It seems that the symptoms are pretty varied. I can't even imagine having anaphylactic shock, but I gather that it's possible for anyone with a mast cell issue.
Gloria
MC remission but now skin rash?!
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Greetings Zizzle,
So glad to hear that you are going to follow through on the mast cell diagnostic workup. It just makes sense with some of the symptoms you've been experiencing, not to mention your history.
Here is what I believe is the latest article (abstract) on diagnosis and classification of mast cell disorders. It is a consensus document written by those who are considered the world's leading authorities on mast cells. Perhaps it can help your rheumie determine what tests are appropriate for a baseline mast cell evaluation.
http://www.ncbi.nlm.nih.gov/pubmed/22041891
If it helps, these are the tests that I had for diagnostic purposes; serum tryptase (usually only high for those with systemic mastocytosis), 24H urine N-methylhistamine (goes to Mayo for analysis), serum heparin and prostaglandin D2.
I'll take a stab at the mast cell questions...
Getting the proper treatment, identifying triggers and making lifestyle changes based on triggers. Mast cell disorders have the potential to cause havoc on a body, therefore identifying triggers becomes critical. This is particularly true for mast cell patients who are at risk of anaphylaxis. Triggers for these episodes may be known or they may be completely random and come "out of the blue" for the patient. It is for this reason that many mast cell patients carry Epi-pens as triggers and reactions can be very unpredictable. Typically we are patients who do not try a new soap, use perfume, try a new food, spend endless hours out in the sun, drink alcohol, etc, etc. Lots of triggers, with lots of potential reactions; from mild flushing or itching to the other end of the continuum...anaphylaxis. Patients need to know if they have this disorder so they not only get the appropriate care, but so they can also take the appropriate precautions about trigger avoidance and emergency medical intervention, if needed.
That's a good deal of info to digest, but I do hope it helps a little. Keep in mind this is based on my personal experience with a mast cell disorder and someone else may have a different experience. This is definitely an evolving area, and the knowledge base is growing each year although my MC specialist tells me we are decades away from fully understanding the role of MCs.
Good to hear the Benadryl cream is helping! Keep us posted on your progress.
Best,
Julie
So glad to hear that you are going to follow through on the mast cell diagnostic workup. It just makes sense with some of the symptoms you've been experiencing, not to mention your history.
Here is what I believe is the latest article (abstract) on diagnosis and classification of mast cell disorders. It is a consensus document written by those who are considered the world's leading authorities on mast cells. Perhaps it can help your rheumie determine what tests are appropriate for a baseline mast cell evaluation.
http://www.ncbi.nlm.nih.gov/pubmed/22041891
If it helps, these are the tests that I had for diagnostic purposes; serum tryptase (usually only high for those with systemic mastocytosis), 24H urine N-methylhistamine (goes to Mayo for analysis), serum heparin and prostaglandin D2.
I'll take a stab at the mast cell questions...
If you do have a mast cell disorder, then you can get on the proper medication to prevent flare ups, which can present with a wide variety of symptoms. (GI, neuro, muscular, skin, respiratory, ...) As you know, medication involves first and foremost, anti-histamines. (Typically at higher doses than average.) You would need to work with an allergist who is knowledgable about mast cell disorders to determine what is the appropriate medication(s)/dosage for your specific needs. You can also begin to identify triggers for mast cell breakdown (degranulation) so you can minimize reactions. Again, it's about prevention of symptoms, through trigger avoidance and medications.Of course, my big question is, what can be done about it if it is mast cell related?
What's the point of knowing if it is mast-cell related?
Getting the proper treatment, identifying triggers and making lifestyle changes based on triggers. Mast cell disorders have the potential to cause havoc on a body, therefore identifying triggers becomes critical. This is particularly true for mast cell patients who are at risk of anaphylaxis. Triggers for these episodes may be known or they may be completely random and come "out of the blue" for the patient. It is for this reason that many mast cell patients carry Epi-pens as triggers and reactions can be very unpredictable. Typically we are patients who do not try a new soap, use perfume, try a new food, spend endless hours out in the sun, drink alcohol, etc, etc. Lots of triggers, with lots of potential reactions; from mild flushing or itching to the other end of the continuum...anaphylaxis. Patients need to know if they have this disorder so they not only get the appropriate care, but so they can also take the appropriate precautions about trigger avoidance and emergency medical intervention, if needed.
Well, Zizzle, when I went to my rheumie last month he included a mast cell disorder for the first time ever on my ICD discharge code. So, yes, my diagnosis is evolving and apparently moving away from MCTD. I think all my doctors are still trying to figure out where I fit in the diagnosis continuum at this point.Does it change the diagnosis? DO you still officially have MCTD?
If you mean between MCTD and MCAS, the answer is "yes". In the most basic way, MCTD = anti-inflammatories; MCAS = antihistamines. (Of course there are many other drugs that are used for both disorders.) Here's the problem with meds and MCAS; you typically see a number of specialists (gastro, hemo, rheumie, allergist) based on your symptom presentation. Each specialist wants you to take medication based on your symptoms. For instance, my rheumie wants me to take an NSAID for joint pain. However, the mast cell specialist tells me that NSAIDs could trigger my symptoms. This is very typical for mast cell patients. Each specialist works in isolation, prescribing away, unaware that mast cell patients have the potential to react to any medication. It presents difficult dilemmas for both patient and physician. This is why it is so important to have a mast cell specialist involved who can be somewhat of a "gatekeeper" for the patient.Are the meds totally different?
I'm going to have to "punt" on this one Zizzle. I really don't know, but it's a good question for an allergist/immunologist.Will Zyrtec/Zantac alter my immune response and lower the ANA level? Will it prevent autoimmune damage from occuring?
That's a good deal of info to digest, but I do hope it helps a little. Keep in mind this is based on my personal experience with a mast cell disorder and someone else may have a different experience. This is definitely an evolving area, and the knowledge base is growing each year although my MC specialist tells me we are decades away from fully understanding the role of MCs.
Good to hear the Benadryl cream is helping! Keep us posted on your progress.
Best,
Julie
Saw the rheumy today. Total by the book kind of guy. They didn't even ask me to undress. I took my sweater off to show him the rash. I even pulled down my pants to show him the remnants of my rash 7 years ago. I think he was getting uncomfortable! 
He referred me to a dermatologist because it wasn't a slam dunk presentation for any specific disease, but he did say I must stay ouf of the sun. 
I mentioned the dermographia, sensitive skin and joint hypermobility, but he wasn't interested. He wanted blood results before talking about anything. He took lots of bloodwork to check for specific antibodies, muscle enzymes, etc, which is all I really went there for, so I suppose I should be satisfied. I even convinced him to order the HLA-B27 gene test, given my previous hip and lower back pains, and continuing SI joint pain. He said I most likely have Undifferentiated Connective Tissue Disease. I read up on it, and it's probably the best one to have. It requires +ANA and mild non-specific symptoms for over 3 years. The longer you go without converting to one of the major autoimmune diseases, the better your chances are of never getting one, or having it be very mild. I'm in my 7th year... He said I'll have autoantibodies for the rest of my life, so I shouldn't expect them to decrease, no matter what I do.
He didn't retest my negative thyroid antibodies from 7 years ago, presumably because my TSH is normal. He said that is one he wouldn't expect to convert if it was negative once.
Of course I went for a haircut yesterday and the hairdresser agreed I must go shorter becuase my hair has gotten thin and stragly from shedding too much. And I'm freezing all the time. My temp varies between 97.1 and 98.1. I have occasional nightsweats, and I've started taking my temperature when I have them - I'm a sweltering 98.6 at my hottest!!
I'm going full force on OTC hydrocortizone cream for the rash until I see a dermatologist. Of course all the inactive ingredients in the creams make me worry.
Is there a safer brand? Aveeno?
Regarding the GF diet, he said he has many patients like me, with mild non-specific autoimmunity, who report significant improvement on a GF diet. It seems those with more active disease get less benefit, or maybe they're too sick to notice?
I'll have more results in a couple of weeks, but I'm somewhat reassured to know I can have mild autoimmunity forever, without development of something dreadful. I also read that Vit D level plays a big role in the outcome of UCTD. My level is 36 now, so I plan to up my dose from 4,000 to 6,000/day, maybe more, especially since I'm supposed to avoid the sun. Seems so strange that diseases that need sun for Vit D are aggravated by it .
He referred me to a dermatologist because it wasn't a slam dunk presentation for any specific disease, but he did say I must stay ouf of the sun. I mentioned the dermographia, sensitive skin and joint hypermobility, but he wasn't interested. He wanted blood results before talking about anything. He took lots of bloodwork to check for specific antibodies, muscle enzymes, etc, which is all I really went there for, so I suppose I should be satisfied. I even convinced him to order the HLA-B27 gene test, given my previous hip and lower back pains, and continuing SI joint pain. He said I most likely have Undifferentiated Connective Tissue Disease. I read up on it, and it's probably the best one to have. It requires +ANA and mild non-specific symptoms for over 3 years. The longer you go without converting to one of the major autoimmune diseases, the better your chances are of never getting one, or having it be very mild. I'm in my 7th year... He said I'll have autoantibodies for the rest of my life, so I shouldn't expect them to decrease, no matter what I do.He didn't retest my negative thyroid antibodies from 7 years ago, presumably because my TSH is normal. He said that is one he wouldn't expect to convert if it was negative once.
Of course I went for a haircut yesterday and the hairdresser agreed I must go shorter becuase my hair has gotten thin and stragly from shedding too much. And I'm freezing all the time. My temp varies between 97.1 and 98.1. I have occasional nightsweats, and I've started taking my temperature when I have them - I'm a sweltering 98.6 at my hottest!!
I'm going full force on OTC hydrocortizone cream for the rash until I see a dermatologist. Of course all the inactive ingredients in the creams make me worry.
Is there a safer brand? Aveeno?Regarding the GF diet, he said he has many patients like me, with mild non-specific autoimmunity, who report significant improvement on a GF diet. It seems those with more active disease get less benefit, or maybe they're too sick to notice?
I'll have more results in a couple of weeks, but I'm somewhat reassured to know I can have mild autoimmunity forever, without development of something dreadful. I also read that Vit D level plays a big role in the outcome of UCTD. My level is 36 now, so I plan to up my dose from 4,000 to 6,000/day, maybe more, especially since I'm supposed to avoid the sun. Seems so strange that diseases that need sun for Vit D are aggravated by it
.Post vacation update --
Had a lovely time in sunny, warm Florida, with the exception of the usual family dysfunction between my inlaws, and then between them and my husband. I'm not sure extended family vacations are a good idea anymore. During yet another annoying bickering car ride I decided life would be more enjoyable if I were a hermit, devoid of human contact (at least with adults). I'm too laid back to deal with other people's made up drama and complaining when I'm just trying to relax. Sigh.
My husband gave up the 100% GF diet during the trip, first with beer, then a hamburger bun by the end of the trip. I can honestly say, he is not gluten sensitive. But he plans to maintain a low gluten diet.
His mother, on the other hand, considers herself "only gluten sensitive" (despite hashimoto's, neuropathy, fatigue, memory loss, IBS, hives, Type 1 diabetes in her family, etc, etc). I was enraged each time she would sip some beer at a baseball game, or assume certain things on a menu might be safe. I tried to keep my composure, but then her indiscretions always resulted in whiny complaints about bloating, D, fatigue, etc. I told her I was not interested in hearing about her symptoms after she knowingly consumed gluten. I told her she knew what she needed to do, and she chose otherwise, so only she should have to deal with the consequences, since she solely is to blame. I'm SO TIRED of it.
Granted I helped her figure out her intolerance after years of suffering, but it feels like she spits at me everytime she loses willpower in my presence. It's driving my husband crazy too. AARGH!! But alas, it gives her something to complain about. She did ask me to help her buy vitamins, so baby steps, I guess.
Anyway, the great news is that my rash went away almost completely before the trip (I'd been applying heavy-duty steroid cream for just a few days). At first I avoided the sun, then I put sunblock on my shoulders, chest and face, then noticing no deterioration, finally got some good sun before the week was up. No sunburn, just a nice tan. The rash is still gone, no itching, bumps or redness, and I didn't use steroid cream all week. I even cancelled my appointment with a dermatologist.
I visit the rheumy next week to discuss test results, but I expect I won't hear anything alarming, just reassurance.
The the MC is STILL IN REMISSION!! I tried to cook as much as possible in Florida, but the inlaws felt they weren't on vacation if they weren't sucking down drinks and junk food at overpriced chain restaurants. So we ate out the second half of the week. Bonefish, Chipotle, Five Guys, local cafes, and not a single tummy rumble!! In fact, I was drinking coffee each morning to get things moving and prevent C!
I really don't understand why I got to remission when I did, but I'm not complaining!!
Had a lovely time in sunny, warm Florida, with the exception of the usual family dysfunction between my inlaws, and then between them and my husband. I'm not sure extended family vacations are a good idea anymore. During yet another annoying bickering car ride I decided life would be more enjoyable if I were a hermit, devoid of human contact (at least with adults). I'm too laid back to deal with other people's made up drama and complaining when I'm just trying to relax. Sigh.
My husband gave up the 100% GF diet during the trip, first with beer, then a hamburger bun by the end of the trip. I can honestly say, he is not gluten sensitive. But he plans to maintain a low gluten diet.
His mother, on the other hand, considers herself "only gluten sensitive" (despite hashimoto's, neuropathy, fatigue, memory loss, IBS, hives, Type 1 diabetes in her family, etc, etc). I was enraged each time she would sip some beer at a baseball game, or assume certain things on a menu might be safe. I tried to keep my composure, but then her indiscretions always resulted in whiny complaints about bloating, D, fatigue, etc. I told her I was not interested in hearing about her symptoms after she knowingly consumed gluten. I told her she knew what she needed to do, and she chose otherwise, so only she should have to deal with the consequences, since she solely is to blame. I'm SO TIRED of it.
Granted I helped her figure out her intolerance after years of suffering, but it feels like she spits at me everytime she loses willpower in my presence. It's driving my husband crazy too. AARGH!! But alas, it gives her something to complain about. She did ask me to help her buy vitamins, so baby steps, I guess.Anyway, the great news is that my rash went away almost completely before the trip (I'd been applying heavy-duty steroid cream for just a few days). At first I avoided the sun, then I put sunblock on my shoulders, chest and face, then noticing no deterioration, finally got some good sun before the week was up. No sunburn, just a nice tan. The rash is still gone, no itching, bumps or redness, and I didn't use steroid cream all week. I even cancelled my appointment with a dermatologist.
I visit the rheumy next week to discuss test results, but I expect I won't hear anything alarming, just reassurance.
The the MC is STILL IN REMISSION!! I tried to cook as much as possible in Florida, but the inlaws felt they weren't on vacation if they weren't sucking down drinks and junk food at overpriced chain restaurants. So we ate out the second half of the week. Bonefish, Chipotle, Five Guys, local cafes, and not a single tummy rumble!! In fact, I was drinking coffee each morning to get things moving and prevent C!
I really don't understand why I got to remission when I did, but I'm not complaining!!
UPDATE AFTER THE RHEUMATOLOGY FOLLOW-UP APPOINTMENT:
I went to see the rheumy today to get my bloodwork results. It's all good news. I have no Lupus antibodies, Hep C was negative, HLA B27 gene was negative, muscle enzymes were normal, all other tests were normal, and my rash is still gone!!! YAY!!!!!!!!!
After saying he wasn't familiar with Anti-Actin Antibody (I had updated results from my other doctor), I explained it's A.K.A. Smooth MUscle Antibody, and he then said I may still be at risk for AI hepatitis, PBC, etc. Of course I know these are all gluten-related, so I know what I need to do...keep doing what I'm doing....which I learned to do with no help from any doctor!! If things ever get bad again, I may consider going Paleo. I hear there is an anti-inflammatory protocol within the paleo diet that's recommended for autoimmune diseases -- it's more restrictive -- zero grains and no nighshades. But I'm not ready to give up potatoes or summer tomatoes just yet... I am planning to decrease the grain consumption now that I tolerate salads, veggies and fruit better.
He said he wanted to see me again in 6 months. I wondered for what, when my primary doc already does my routine follow-up bloodwork. Then I saw how much is outstanding on my account awaiting insurance reimbursement after 2 pathetic, short, unhelpful visits...$1,376!!! WHAA?!?!? I imagine this includes in-house bloodwork, but still!! It makes my integrative medicine doctor, who is 1,000% better, seem like a bargain!
So, another doc bites the dust in my book. And I'm on my own again, working to heal my leaky gut.
I went to see the rheumy today to get my bloodwork results. It's all good news. I have no Lupus antibodies, Hep C was negative, HLA B27 gene was negative, muscle enzymes were normal, all other tests were normal, and my rash is still gone!!! YAY!!!!!!!!!
After saying he wasn't familiar with Anti-Actin Antibody (I had updated results from my other doctor), I explained it's A.K.A. Smooth MUscle Antibody, and he then said I may still be at risk for AI hepatitis, PBC, etc. Of course I know these are all gluten-related, so I know what I need to do...keep doing what I'm doing....which I learned to do with no help from any doctor!! If things ever get bad again, I may consider going Paleo. I hear there is an anti-inflammatory protocol within the paleo diet that's recommended for autoimmune diseases -- it's more restrictive -- zero grains and no nighshades. But I'm not ready to give up potatoes or summer tomatoes just yet... I am planning to decrease the grain consumption now that I tolerate salads, veggies and fruit better.
He said he wanted to see me again in 6 months. I wondered for what, when my primary doc already does my routine follow-up bloodwork. Then I saw how much is outstanding on my account awaiting insurance reimbursement after 2 pathetic, short, unhelpful visits...$1,376!!! WHAA?!?!? I imagine this includes in-house bloodwork, but still!! It makes my integrative medicine doctor, who is 1,000% better, seem like a bargain!
So, another doc bites the dust in my book. And I'm on my own again, working to heal my leaky gut.
