First, thank you all, yet again, for the wealth of knowledge and resources that we have at this amazing site. It has come to my rescue once more.
On Monday night I suddenly started having D (which for most of you is par for the course, but extremely rare for me), major nausea, a sharp increase in abdominal pain, dizziness and a return of the allergic symptoms I was having the day before (which I had posted about in a thread asking for help with my Vit. D problem and sun allergy discovery). I don't have a lot of experience with system-wide allergic reactions, so I didn't really know what was happening and I just went to bed hoping I would feel better in the morning.
I saw my PCP Tuesday, who confirmed my sun allergy and chided me (rightfully so) for not recognizing I was having an anaphylactic episode. He sent me down the hall for some labs and I spoke with his nurse about my colitis and it was revealed that my records showed a diagnosis of Ulcerative Colitis. I corrected her, and asked her to change it in my file and the next thing I knew she was back to tell me he wanted to see me again. When I went back to the room he told me the switch to Mastocytic Colitis "changed everything" and he believes that I have a systemic mast cell disease, based on comparing my crazy health history against another patient of his who has Systemic Mastocytosis. At that point he gave me a prescription for Sigulair and a couple of EpiPens and is running a serum tryptase.
I felt pretty bad all day yesterday and I woke up today itching again head to toe, a little flushing, high heart rate and more D. I went back to the doctor and this time he added an H1 called Xyzal and wants me to see an allergist ASAP. Because of this amazing site and its many wonderful members, I already had a name to run by him. I did a forum search yesterday to see if anyone here had been down this road and found some very helpful old posts and, of course, Tex had added in the list of recommended doctors an allergist in Austin who Mary Beth had recommended for mast cell issues and my PCP is going to see if he can get me in with him.
I am confused and distressed at what my body is doing this week and very nervous about the new meds, which I haven't been brave enough to try yet. For some reason I've always been very intolerant to medicines and I'm very prone to side effects, even the rare ones. One of the things that drew me to this group was the mission to manage my health without pills, but here I am getting ready to pop even more (assuming my body doesn't react badly to them). I've never tried Singulair and I haven't done well in the past with H1 blockers - Xyzal is one I've never even heard of. For all I know, the new meds may all be chock full of gluten dairy and soy - I've been too preoccupied to check on them and I forgot to ask the pharmacist. I'm also scared to death of the possibility of having to inject myself with an EpiPen, since epinephrine is on the "absolutely avoid" list with my heart condition. I understand that whatever r
Thanks for letting me vent. My body feels so out of whack and everything seems like a huge mess right now. I'm still trying to wrap my head around it all and figure out how to proceed.
Unsettling turn of events... venting and thanks!
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Wow, that's a lot to take in. Are you saying they gave you the wrong diagnosis originally, or your file had the wrong dx listed? My MIL got diagnosed with Mastocytic Enterocolitis this year thanks to me. I pushed her to ask her docs for the extra stain on her biopsies, given her history of allergies and chronic hives. Her case seems to be mild, since she can drink tons of alcohol with no trouble, take plenty of meds, and cheat on her gluten free diet weekly, but she often complains of GI distress and her hives can be terrible. You might want to ask about getting Gastrocrom, a mast cell stabilizer for the GI tract. I don't think it causes many side effects, if any. But I think it's not widely available in the US.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Hey, Zizzle!
They had just put it in my file wrong - not the first time that's happened
. I was diagnosed 7 years ago. We tried the Gastrocrom back then and, unfortunately, it made me very dizzy and aggravated my heart. I got similar issues with the Zyrtec/Zantac combo, so we settled on just Pepcid. That's been fine in the past but now that the rest of my body wants to join the party I guess I have to bite the bullet and track down something to help with my H1 receptors. When I get to an allergist I think I'm going to ask about Ketotifen as a Gastrocrom alternative, though I've heard it's hard to get in the US.
That's great that you were able to lead your MIL to a diagnosis - it's a hard one to ferret out, for sure!
They had just put it in my file wrong - not the first time that's happened
. I was diagnosed 7 years ago. We tried the Gastrocrom back then and, unfortunately, it made me very dizzy and aggravated my heart. I got similar issues with the Zyrtec/Zantac combo, so we settled on just Pepcid. That's been fine in the past but now that the rest of my body wants to join the party I guess I have to bite the bullet and track down something to help with my H1 receptors. When I get to an allergist I think I'm going to ask about Ketotifen as a Gastrocrom alternative, though I've heard it's hard to get in the US.That's great that you were able to lead your MIL to a diagnosis - it's a hard one to ferret out, for sure!
I took Singular for a long time. It's a very mild drug that is even given to young children. I hope you find something that helps. I take OTC Allegra and at night, OTC Benadryl. Also, remember to eat a diet low in high histamine foods and try not to eat leftover meats and proteins ( also high in histamines)
good luck
Leah
good luck
Leah
Systemic mastocytosis would certainly explain a lot of things, including why you are sensitive to so many medications.
The serum tryptase test may not provide any useful information, depending on your mast cell status when the blood was drawn. There's no easy way to measure mast cell activation directly, but when it occurs, it's also accompanied by a spike in the amount of tryptase enzyme in the blood, and so the tryptase level is measured and deemed to be a reflection of mast cell activity.
When a mast cell reaction is triggered, the level of tryptase enzyme quickly rises, and it typically peaks in about 2 hours, then slowly declines. If the sample is not collected near the peak of the spike in enzyme levels (or soon after the peak), then the detected level may be determined to be normal, and this a common and frustrating problem for many people suffering from this condition. But if you can catch it at the right time in the cycle (and collect a serum sample then), the results can be used to confirm a systemic mastocytosis problem.
Best of luck with this. We have a handful of members who have been diagnosed with this. Unfortunately, most of them rarely or never post anymore, but a lot of discussions can be found in the archives.
And please keep us updated.
Tex
The serum tryptase test may not provide any useful information, depending on your mast cell status when the blood was drawn. There's no easy way to measure mast cell activation directly, but when it occurs, it's also accompanied by a spike in the amount of tryptase enzyme in the blood, and so the tryptase level is measured and deemed to be a reflection of mast cell activity.
When a mast cell reaction is triggered, the level of tryptase enzyme quickly rises, and it typically peaks in about 2 hours, then slowly declines. If the sample is not collected near the peak of the spike in enzyme levels (or soon after the peak), then the detected level may be determined to be normal, and this a common and frustrating problem for many people suffering from this condition. But if you can catch it at the right time in the cycle (and collect a serum sample then), the results can be used to confirm a systemic mastocytosis problem.
Best of luck with this. We have a handful of members who have been diagnosed with this. Unfortunately, most of them rarely or never post anymore, but a lot of discussions can be found in the archives.
And please keep us updated.
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.
Thank you for the explanation about the tryptase test, Tex. Very helpful! That must be what my Dr. meant when he told me that we would do the blood draw, but it was "very hard to find". We were almost certainly too late for this sample to be of any use, but I will keep that time frame in mind for the future.
I think I really lucked out that I have a Dr. that has at least dealt with it before. I chose him because of his reputation for being thorough and enjoying a challenge. He hasn't always seemed to live up to that hype, but he seemed a little... well, "excited" probably isn't the right word, but something akin to that when he had his "eureka" moment the other day. His somewhat dramatic "this changes everything" statement was followed by the declaration, "We're getting into some really rare stuff now." I guess if my health crisis adds some extra flair to his day I'll go with it - at least he's motivated, which is more than I can say for most of the doctors I've seen.
I think I really lucked out that I have a Dr. that has at least dealt with it before. I chose him because of his reputation for being thorough and enjoying a challenge. He hasn't always seemed to live up to that hype, but he seemed a little... well, "excited" probably isn't the right word, but something akin to that when he had his "eureka" moment the other day. His somewhat dramatic "this changes everything" statement was followed by the declaration, "We're getting into some really rare stuff now." I guess if my health crisis adds some extra flair to his day I'll go with it - at least he's motivated, which is more than I can say for most of the doctors I've seen.
I agree that your doctor seems to be well above par on many of the issues that we have to deal with, and it definitely helps that he seems enthusiastic about pursuing these issues. I have a hunch though, that the condition isn't actually as rare as the medical profession believes it to be. They just haven't had any incentive to diagnose it until recently, and because of that, they haven't been looking for it. Like the other forms of MC, they can't find ME unless they look for it. That said, the truly severe cases are somewhat rare, but many of us have slight to moderate inappropriate mast cell activation issues associated with our MC.
And the research team that originally discovered/described/named mastocytic enterocolitis (ME) concluded in the original study they published in 2006 that 70 % of patients who had "intractable diarrhea", due to inflammatory bowel disease, celiac disease, collagenous colitis, and lymphocytic colitis, had an elevated mast cell count (IOW, they qualified for a diagnosis of ME). But note that they also concluded that of all of the patients in the study, none of them had systemic or cutaneous mastocytosis.
IOW, your doctor may be jumping to conclusions and overstating the possibilities. Of course his comment, "We're getting into some really rare stuff now", referred to the possibility that you might have systemic mastocolitis, not simply ME. I will agree with him that since some of your symptoms can be attributed to an anaphylactic reaction, there is definitely a possibility that you may qualify for a diagnosis of cutaneous or systemic mastocytosis. Hopefully you'll be able to see an expert soon, who can make an accurate determination.
As always, you're most welcome.
Tex
And the research team that originally discovered/described/named mastocytic enterocolitis (ME) concluded in the original study they published in 2006 that 70 % of patients who had "intractable diarrhea", due to inflammatory bowel disease, celiac disease, collagenous colitis, and lymphocytic colitis, had an elevated mast cell count (IOW, they qualified for a diagnosis of ME). But note that they also concluded that of all of the patients in the study, none of them had systemic or cutaneous mastocytosis.
Mastocytic enterocolitis: increased mucosal mast cells in chronic intractable diarrhea.RESULTS:
The mean +/- SD concentration of mast cells in the 50 control subjects was 13.3 +/- 3.5 cells per high-power field; hence, patients with more than 20 mast cells per high-power field were considered to have increased mast cells. Thirty-three (70%) of 47 patients with chronic intractable diarrhea had increased mast cells, and symptoms were controlled by drug therapy in 22 (67%) of the 33 patients. No patient had systemic or cutaneous mastocytosis. No increase in mast cells was seen in patients with other common causes of chronic diarrhea.
CONCLUSIONS:
In chronic intractable diarrhea, colonic or duodenal biopsy specimens may appear unremarkable on routine hematoxylin-eosin staining, but increased mast cells may be demonstrated by immunohistochemistry for mast cell tryptase, with the novel term mastocytic enterocolitis describing this condition. Similar increases in mast cells are not apparent in control populations or in patients with other specific diseases that cause chronic diarrhea. The cause of the increased mast cells remains to be elucidated.
IOW, your doctor may be jumping to conclusions and overstating the possibilities. Of course his comment, "We're getting into some really rare stuff now", referred to the possibility that you might have systemic mastocolitis, not simply ME. I will agree with him that since some of your symptoms can be attributed to an anaphylactic reaction, there is definitely a possibility that you may qualify for a diagnosis of cutaneous or systemic mastocytosis. Hopefully you'll be able to see an expert soon, who can make an accurate determination.
As always, you're most welcome.
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'm in absolute agreement with you about ME. I have long believed that it is not rare, just underdiagnosed, which is a shame. I also believe that IBS is a sham. I would be very interested to see what the percentages would look like if biopsies, complete with tryptase stains were ALWAYS taken during a colonoscopy for people having GI troubles. I think we would see a very different picture and a sharp decline in "IBS" cases.
As for the SM, in one way I guess it would be nice for all of my quirky medical issues to be explained under one umbrella, but having read about it a bit I really hope he's wrong. If he's not, I don't doubt that I can rise to the challenge, but there are facets to that disease that I'd just as soon not have to experience. But I guess we could all say that about the things we already have.
As for the SM, in one way I guess it would be nice for all of my quirky medical issues to be explained under one umbrella, but having read about it a bit I really hope he's wrong. If he's not, I don't doubt that I can rise to the challenge, but there are facets to that disease that I'd just as soon not have to experience. But I guess we could all say that about the things we already have.