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Specific Food Allergies => Other foods/MFA/EE => Topic started by: Ciel on October 16, 2016, 03:40:41 PM

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Title: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on October 16, 2016, 03:40:41 PM
Based on everything I have read I do not believe I have EE, however I have many issues with food and eating and have been dealing with pain with eating for years. It's not consistent. My GI doc wants to rule out EE even though I don't have any of the classic symptoms. I have disordered eating patterns and a tendency to avoid eating but I sometimes have pain even when I don't eat.

I am not typical when it comes to allergy testing either. I skin test negative to everything, barely react to the control even. However injuries to my skin sometimes welt excessively and I get hives for seemingly no reason sometimes (usually with temperature changes but sometimes food). Despite negative allergy skin tests I have a history of anaphylactic reactions (presenting without hives). Never had a blood test.

I have asthma but it mostly non-atopic than triggered by overt allergens. There are allergens that are problems, however this is one more thing that doesn't fit in the 'typical' category.

I was tested for Celiac disease and the results were in the no-man's-land between negative and positive, however I'd been off gluten for months before doing the test. The biopsies were clean (again off gluten for almost a year by that point but ate gluten for a short period before the scope). I respond to a gluten free diet. I have a family history of Celiac disease. I have the skin symptoms.

So the idea now is that gluten may be an EE trigger instead of Celiac disease BUT the scope I had years ago did not show any signs of EE nor has any bloodwork ever shown elevated eosinophils in CBC tests. I don't know if it can happen like allergy testing has been for me -- where I test negative but have documented anaphylactic reactions to peanuts and likely shrimp. I sometimes have some trouble swallowing properly but the biggest thing is the pain that can be severe and somewhat debilitating at times.

I am so confused and frustrated. It feels like nothing with me ever makes sense.

I'd be glad to hear from other adults diagnosed with EE and hear what symptoms they had leading to diagnosis. I know we have a few adults around here that will hopefully read this and have a chance to respond.




(Edited to change the thread title.)
Title: Re: Eosinophilic Esophagitis (EE) in Adults
Post by: StridAst on October 16, 2016, 04:53:24 PM
Hi there. I'm sorry to hear about your problems. The most frustrating thing about this kind of thing is the uncertainty. That's for sure!   

I was diagnosed with EE back in February. I'm 40 years old. Had trouble swallowing for years. Along with random chest pain intermittently  I once went to the Er for the chest pain when it started about 19 years ago, among other tests they ran was giving me some thick white substance to drink, the pain went away. They told me that the drink was an anaesthetic and since it worked, I just had heartburn and they sent me on my way. Tums, prilosec etc never really helped much.

Last year I started having major food allergy issues. Hives from shoulders to toe's for a week and a half etc. One incident where attempting to swallow a fairly small bite of a wrap that had hummus in it resulted in my throat closing completely off. I couldn't swallow water to wash it down. Trying caused intense pain. Scared the crap out of me.  Vomiting set in after 10 min or so and cleared the blockage. I felt exhausted after, and was shaking.  This scared me enough to go in to see an allergist. Tested positive for plenty of allergies and then some, but I had to get blood tests done for the most part.  I'm the opposite of you. My skin reacts to everything. Including the negative control (saline)
The allergist referred me to a GI doctor for the scope and biopsy.  EE was confirmed.  My throat lacks the rings that the majority of EE patients have.  There's actually several possible throat types. 5 or 6 I think  3 if which have rings.

My throat has the inflammatory type. The throat scope shows a throat that looks a bit bumpy with larger bumps that look white at the top.  As I understand it, long term exposure to food allergies could still cause my throat to develop the fibrous type (rings) but the tissue right now is responding to the presence of the eosinophils by getting hyper inflamed when exposed to severe allergens. So it swelled shut on me with that bite of wrap, rather than getting caught on a ringed stricture.  I.e. swelled shut in the time it took to take the bite, chew and swallow, then try to find a drink because I could feel it was stuck  all in all maybe 30-45 seconds, counting time to chew.

One thing to remember about EE, is without a biopsy a throat scope is NOT definitive.  The biopsy flat out measures the count of eosinophils in your esophagus.  Their presence in large quantities is what the condition is named after of course.  From the sound of your symptoms, I'd recommend getting another throat scope and thus time a biopsy.  And get some blood tests on your allergies!

EDIT: I thought I'd add that I've heard that there are even people diagnosed with EE who had completely normal looking esophagus at the time of the biopsies. Definitely the minority there, but entirely possible. 
Title: EE in Adults
Post by: Ciel on October 17, 2016, 09:38:28 AM
Thanks StridAst, this is helpful!

I have pretty severe heartburn (GERD) and am on long term PPI therapy for that but even with taking meds 2x daily I still have breakthrough symptoms sometimes. Usually after swallowing meds or something.

I haven't had a scope to specifically look at the esophagus and take biopsies. I've had a gastroscopy to biopsy the small intestine and I just assume that on the way in they would notice if there was anything obviously wrong with my esophagus.

My blood work is completely normal for eosinophils even with a history of allergic reactions. If there were an excess of eosinophils in the tissue, wouldn't it show up in my blood too??

Your comments on chest pain resonate with me. My GP thinks it is reflux. This is my big issue -- the pain.

The difficulty with swallowing is not getting stuck for me, it is more that I am feeling it go slowly down all the way.
Title: Re: Eosinophilic Esophagitis (EE) in Adults
Post by: StridAst on October 17, 2016, 10:28:16 PM
I can tell you eosinophils in the esophagus can't be detected by blood tests. They are out of the blood stream clustered the esophageal tissues. Otherwise blood tests could save a lot of people from the expensive scope and biopsies.  As for the feeling of food going slowly down all the way, I get that too anytime I eat something I shouldn't have.  As I got the food allergies pinned down, largely due to the IgE blood testing, both the pain went away for the most part, and so has most of the difficulty swallowing.  I've only had 6 or 7 incidents with food getting really stuck,  and only the one where I seriously couldn't dislodge it no matter what. 

Most of my EE symptoms have been the slow annoying swallowing and the chest pain.   I notice symptoms can last for hours of increased difficulty swallowing, and a feeling kind of like a sore throat after eating something that I am mildly allergic to, or chest pain if I eat something that had a higher IgE number (anything over a 2 in my case. All my IgE tests have fairly low numbers despite the severity of the symptoms)

You mentioned a celiac test that was inconclusive. Was it low IgA?

It's possible btw to be allergic to the medication you are taking, without being allergic to the drug itself.  All of the other crap that makes up the pill came from somewhere, soy is a common substance used in many chemicals, and also a common allergen.  Could be why you get chest pain closer to when the medication is taken. (If it's EE)  very worth ruling out imho.
Title: Re: EE in Adults
Post by: Ciel on October 18, 2016, 07:54:49 AM
This is very helpful, thank you!
Title: Re: EE in Adults
Post by: allergyadventure on October 19, 2016, 09:02:47 PM
You've gotten some good information from StridAst. My understanding is that EE can only be diagnosed with a biospy of the esophagus while one is already taking a PPI. Nothing else is specific for EE, because there are other non-allergic conditions that can cause eosinophils in the esophagus (like GERD).

I was diagnosed with EE three years ago in my early 30s. I'd been having symptoms for about five years prior to diagnosis. Mostly it was difficulty swallowing that regularly resulted in food getting completely stuck in my throat mid-meal. My worst episodes would have my throat swelling shut so that food nor water would go down. These episodes would last up to an hour or more at times, and several times I nearly went to the ER (probably should have) but managed to vomit up enough of the food that I could drink enough water to force the rest down. Very painful and scary.

I felt my best when I eliminated all top allergens. But in reality that was extremely hard (especially because I also manage Type 1 diabetes and so try to eat a low-carb diet), and the only foods that I truly seem to react to in a major way (as in can hardly swallow after exposure) are wheat and milk. So at the moment those are what I avoid strictly, and I accept some mild difficulty swallowing and acid reflux most of the time. My allergist did IgE testing and that comes back low-positive for almost every food (my one anaphylactic food allergy comes back very high). Skin testing is negative for most foods and borderline positive for others, again except for my anaphylactic allergy that comes back very positive.

When I react to food with EE it sometimes starts as I'm eating and sometimes starts a few hours later. Reactions usually consist of trouble swallowing (food going slow or needing water to help force it down), pain when swallowing (as if I can feel the food scraping the sides of my throat), acid reflux, stomach pain, sore or irritated throat even when not eating (and my throat just feeling "funny" all the time, like it's swollen), and also some symptoms that seem like mild IgE symptoms like randomly breaking out in hives, mouth burning or tingling, or getting an upset stomach shortly after eating. One thing I do notice is that once I react to something, *everything* is hard to swallow for at least a week, even if they're foods I'm not allergic to.

I have never had raised eosinophils in my blood. I don't think that's common nor necessary with EE. I've also been told that skin tests and IgE blood tests don't necessarily pick up on foods that will trigger EE, because EE reactions do not really involve IgE antibodies and there's no known way to test for EE allergens.

I hope that you are able to get to the bottom of your symptoms. If there's one thing I've become utterly convinced of over the past few years, it's that IgE reactions and anaphylaxis are only one type of food allergy, and in a way they are the simpliest and most straightforward. I think there are a lot of food allergies/reactions, like EE, that medicine is only beginning to understand.
Title: Re: EE in Adults
Post by: StridAst on October 21, 2016, 10:04:39 AM

I also been told that skin tests and IgE blood tests don't necessarily pick up on foods that will trigger EE, because EE reactions do not really involve IgE antibodies and there's no known way to test for EE allergens.

This makes way too much sense. I'm surprised my allergist and GI dr never mentioned it.  I react to wheat. Mildly as far as my EE goes, but no test showed up positive for wheat. A couple other things too.  Though everything I tested positive for with allergy tests does indeed trigger my EE. 

I like to think of EE like asthma in the esophagus. Any exposure to triggers is bad, once exposed the reactions persist for quite a while after, with all different severities depending on how strongly I react to the trigger. OAS allergies are still triggers, so while I don't need to worry about anaphylaxis from eating pears, just a mouth that feels like it's being horribly tickled somehow, it's still a medium trigger food for my EE

Like allergyadventure said, to determine EE, you need to be on a PPI, and get the scope with biopsy. I was put on prilosec for I think 3 weeks straight might have been 4. I remember thinking it was much linger than the 2 weeks straight that had been the most I took in a row before, prior to the scope.
Title: Re: EE in Adults
Post by: StridAst on November 08, 2016, 10:27:31 PM
I can personally confirm that eosinophils being normal in the blood have no bearing on if you have EE or not.  I just had to have a complete blood count test done with auto differential.  My eosinophils count was within the normal range. Though EE was confirmed for me with a scope and biopsy back in February.  In case this is ever relevant to anyone.
Title: Re: EE in Adults
Post by: krasota on November 09, 2016, 12:55:58 AM
Have you tried swallowing cromolyn, Ciel?  I'm trialing it now and have seen dramatic improvement with my GERD and IBS-D, despite biopsies not indicating EE or EG. 

I think in a few years, they'll be more comfortable labeling us with mast cell something or other issues.  Right now it's still too nebulous.
Title: Re: EE in Adults
Post by: StridAst on November 09, 2016, 10:30:10 AM
Ironically it's mast cell disorder things I'm being tested for. The CBC and metabolic panels are simply to rule out other possibilities.  Still waiting on the tryptase test results.  But in reading up on them and EE I've found that a: eosinophilic disorders often occur with mast cell disorders. And b: Eosinophilic disorder patients typically have mast cells paired with the Eosinophils.

https://www.ncbi.nlm.nih.gov/pubmed/20538331

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4083463/

So cromolyn, being a mast cell stabilizer, makes sense.  I'd probably want to start it right now myself but I don't want to risk anything that might interfere with diagnosis in any way. Is gastrocrom over the counter, or prescription only?
Title: Re: EE in Adults
Post by: krasota on November 09, 2016, 04:19:27 PM
Prescription-only for oral use.  Cromolyn sodium, aka Gastrocrom. 

I should actually let my allergist know the dramatic results.  He may want me to back off and do some tests, but I'm hoping he can just tell me to get on with my bad self and feel better. 

I still need to find a compounding pharmacy for topical cromolyn.  I can't use Elidel forever, but there aren't the same kind of limits on cromolyn. (I haven't called yet. One thing at a time.)
Title: Re: EE in Adults
Post by: Ciel on November 30, 2016, 03:43:02 PM
Have you tried swallowing cromolyn, Ciel?  I'm trialing it now and have seen dramatic improvement with my GERD and IBS-D, despite biopsies not indicating EE or EG. 

I think in a few years, they'll be more comfortable labeling us with mast cell something or other issues.  Right now it's still too nebulous.

No, I've never tried swallowing chromolyn. I read a bit about it and it sounds promising. I'm going to ask about it. I'm glad it is helping you Krasota!

Thanks so much for your posts Krasota, StridAst and AllergyAdventure. I got a referral to a new allergist and we're going to aggressively look at my history, reactions, test results and try to pinpoint what the heck is going on with me. I'm going to push for food challenges if blood work is negative because my skin tests are negative despite anaphylactic reactions. So what if it's not IgE antibodies to a food but a mast cell disorder? (I don't know if that is possible, I'm just thinking). I'm really going to push looking into EE and Mast Cell Disorders when I see the allergist. This is all very confusing and frustrating.

I've been put on a elimination diet to see if that helps. I still have the abdominal pain frequently, and I finally gave in and allowed my Naturopath to do IgG intolerance testing. I figure that it can't hurt at this point at least to try it and see if I feel better.

Re: Mast cell disorders: I react to physical stimulation - cold, heat, exercise-- these cause hives, swelling, flushing, etc.. I react to perfumes and strong chemical scents with a GI response, asthma. I react to certain foods, mildly to latex, acetaminophen, ASA. Things like this might be explained if there is a mast cell disorder. That would be nice. Knowing, not the specific diagnosis. ;)
Title: Re: EE in Adults
Post by: Ciel on November 30, 2016, 03:53:22 PM
PPIs -- I have been taking a prescription strength one twice daily for years. We had to keep trying stronger ones because they wouldn't work. I later learned that I am an ultra rapid metabolizer for PPIs. I still have bad reflux on occasion, even while on meds, but it is much better controlled than before.

I'm also pushing to re-do Celiac testing. Just hoping to sort it out once and for all.
Title: Re: EE in Adults
Post by: spacecanada on March 01, 2017, 01:11:25 PM
My allergist appointment today ended with a referral to be tested and scoped for EE.   :-[  My allergist described it like asthma of the eonsophagaus.  I don't have heartburn, reflux, or IBD that I am aware of and I couldn't relate to any of those symptoms as my allergist described it, and it happens to very specific and atypical foods, so he wants to explore the possibility of EE.

I was just hoping but would be another allergy that I already know how to deal with.  (Or just a figment of my imagination - nothing wrong at all, wouldn't that be nice!)

Where can I learn more about this scope process? I have a sensitive gag reflex and the idea of anything down my throat makes me gag enough already.  I know I will get more details when I see the specialist, but I also have a dissociation disorder and may not remember much of my appointment. (I was very dissociated at my allergist appointment today and had a difficult time answering the allergist's questions.). My husband will come with me.
Title: Re: EE in Adults
Post by: krasota on March 01, 2017, 10:52:19 PM
It's an upper endoscopy.  The ones I've had involved sedation.  They can also spray your throat with a numbing spray (I'm allergic, so we skip it).  I did wake up during my last one because despite extra warning, the hospital didn't make sure they had their ducks in a row with anaesthesia (allergies again).  I recommend not remembering it.  But the sensations I felt weren't the endoscopy--they were the meds that were not working well for me.  Ugh.
Title: Re: EE in Adults
Post by: spacecanada on March 05, 2017, 12:56:23 PM
A question I forgot to ask my allergist, but hopefully some of you know: should I be modifying my diet before seeing the gastroenterologist (?) or not? Is this test like the Celiac one where you have to eat the offending foods for the test to yield proper results? I had or remove wheat because of hives, eczema, and throat swelling - which also made me very scared.

Also, does Epi help for throat swelling due to EE?

All questions I need to ask my doctor, for sure.  But in the meantime...
Title: Re: EE in Adults
Post by: StridAst on March 07, 2017, 10:16:56 AM
When I went in for my EoE scope, I was told, just be sure to take the PPI (Prilosec) for 3 weeks straight.  No need to change my diet unless something actually caused food impaction.    When I went in, they asked about allergies to peanut and soy, and since I'm allergic to both, they gave me a medication that contained neither.   I remember nothing of the appointment after they gave me the sedative.  My throat was sore for a couple weeks after, and I had a liquid only diet for seversl days after since the biopsy spots need to not get food stuck inside them before they heal.

The actual scope was non traumatic.  Finding food I could safely eat after was far more of an inconvenience, but only an inconvenience.
Title: Re: EE in Adults
Post by: krasota on March 16, 2017, 12:21:31 PM
I've never had to avoid food post-biopsy, FWIW.
Title: Re: EE in Adults
Post by: spacecanada on March 16, 2017, 03:51:29 PM
Still waiting on an initial appointment date but I now know which endoscopy specialist it will be: he has exceptional ratings for both his doctor abilities and bedside manner and his office is super close to where I live - only a 6-minute drive or 15-minute bike ride. (Versus up to an hour drive to get downtown in rush hour.) That helps to ease a bit of my stress.

I found someone in my local allergy group on fb who has EE and has been a helpful resource.  Food still gets stuck all the time (even right now), but I haven't had a full esophagus closure (where I couldn't even swallow water) since I cut out wheat and sorghum. 

Ciel - any update on whether or not you have EE? I hope you were able to get some answers one way or another. 
Title: Re: EE in Adults
Post by: Ciel on August 01, 2017, 10:14:13 AM
I haven't had any further testing at this point, other than IgE specific blood tests for foods I have reacted to in the past. All negative.

StridAst was telling me about Mast Cell disorders in another thread, and hopefully it is okay for me to bring it back over here. I was going to start a new thread, but this one already has valuable information about EE and Mast Cell disorders and all the things that seem to come tangled together so it makes more sense to keep it all in one place. I will edit the thread title to expand the description.

StridAst, would it be okay with you if we copy our mast cell related conversation over into this thread? I will wait for your approval before I do that but I think it would be useful to have here as well.
Title: Re: EE in Adults
Post by: Ciel on August 01, 2017, 10:15:33 AM
Space, I think you said they ruled out EE for you? Or what happened with your testing?
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on August 01, 2017, 11:15:44 AM
From Curious, how many people with a PA tolerate/trust peanut oil?

My problem is it's hard for me to pick apart my reactions with certainty, as I have more than just allergies.  I also apparently have a mast cell disorder, as well as eosinophilic esophagitis.  Both the MCAS and the EoE can cause reactions that you can't test for. (Non IgE mediated). MCAS can also cause reactions to things like sunlight, exercise, heat, emotional stress, etc. Also, MCAS, EoE, and food allergies all interact with each other. There isn't an obvious difference between an MCAS reaction and a food reaction, so it becomes much *much* harder to be 100% certain as to why I'm having severe GI distress, hives, a feeling of impending doom, difficulty swallowing, etc.   So I get stuck taking way too many pills, avoiding way too many foods, and much guessing as to what causes what.


I feel for you. I am still trying to figure out my own, somewhat similar issues. Same symptoms you are describing, reactions to foods, exercise, heat/cold, and maybe emotions (I haven't paid enough attention to be sure but I think it has happened -- If I get really upset and panicky I tend to flush and get hives on my face, but I'm not sure if that is a normal physiological response to anxiety or not).

I have not been diagnosed with MCAS of EoE though. And all IgE allergy testing keeps coming back negative. My allergist called me this morning to talk about food challenges, and she touched on the fact that some reactions don't seem to be IgE mediated but nobody knows what does trigger them, because the reactions are to all appearances anaphylactic. And epinephrine helps. I was diagnosed with cold urticaria as a teen, a non-IgE mediated anaphylactoid reaction to sudden drop in body temperatures. It seems to have become much less severe over the last 18 years though, now the worst I get is a few hives and my ears or hands sometimes swell a little. I have reacted significantly to intense exercise. Sometimes the severe GI distress seems to be obviously tied to a food and other times it seems to be random so I don't know if it is a reaction from residual contamination from a known allergy, a new food reaction, or anxiety, or what ???


I have not been diagnosed with MCAS of EoE though. And all IgE allergy testing keeps coming back negative. My allergist called me this morning to talk about food challenges, and she touched on the fact that some reactions don't seem to be IgE mediated but nobody knows what does trigger them, because the reactions are to all appearances anaphylactic. And epinephrine helps. I was diagnosed with cold urticaria as a teen, a non-IgE mediated anaphylactoid reaction to sudden drop in body temperatures. It seems to have become much less severe over the last 18 years though, now the worst I get is a few hives and my ears or hands sometimes swell a little. I have reacted significantly to intense exercise. Sometimes the severe GI distress seems to be obviously tied to a food and other times it seems to be random so I don't know if it is a reaction from residual contamination from a known allergy, a new food reaction, or anxiety, or what ???


Thanks!  I want to add that your story sounds *exactly* like a mast cell disorder.  Seriously, look into it.  There are two main types. MCAS (likely not rare, but no hard knowledge as to it's prevalence) and Mastocytosis (1 in 200,000 rare). Symptoms are mostly the same between the two.

Things to know:  MCAS was only accepted by the world health organization in 2007.  So most doctors are unaware it even exists.  Older diagnossis likely predate it's discovery.   Even now the places that know about it are the more well known university hospital's or research clinics.  Here in Utah there is just the U of U hospital's allergy department that knows anything about it.  Other good examples include the Mayo Clinic.  Reputable places that are more clued in on recent medical knowledge.   It's also a hard one to test for. (24 hour urine collection and testing seriously sucks.  So does needing tryptase taken while you are having a major flare and *might* make a 5 min drive without risking an accident.)

Hallmarks of mast cell disorders are along the lines of allergic reactions you test negative to, and or allergic reactions to things you can't be truly allergic to, like heat/cold, exercise,  chemical smells and many other things.  For me, yet another clue that a mast cell disorder was going on was dermatographia (Google it). 

[url]https://www.novapublishers.com/catalog/product_info.php?products_id=42603[/url]

That's a peer reviewed paper written by one of the few experts on MCAS.  You might find it enlightening.  Look into it.   Also, anxiety can sometimes be an anaphylactic reaction.  That whole "feeling of doom" stuff.  To me, I get this at every major flare, I feel like I'm about to lose everything and everyone.  Like my whole world is going to collapse out from under me.  And yes, it can be both symptom AND trigger for someone with a mast cell disorder, which can really drag out the duration of a flare.  Kind of a feedback loop. (5 weeks to get feeling "normal" again is my worst record)


Oh wow, thank you StridAst. I need to look into this more. So much seems to be spot on after initial skimming.

I booked a tree nut challenge for September so I have until then to gather info to talk to the allergist about this.

Do you mind if I start a dedicated thread for this? I know we have chatted a bit in the thread about EE and a lot of what you said there also hit home. I would love to try to make a clearinghouse thread to explore how all of this stuff is related. I have many questions! I also think I need to summarize my own history so I can see it better and would be interested in comparing notes with you about your journey in all this (as much as you are comfortable sharing).
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: StridAst on August 01, 2017, 11:51:49 PM
Here are some things to aid your research.

http://www.mastattack.org/

This is a very reputable site, where the author lists her references for the statements she makes.  *Very* informative.  The author has systemic Mastocytosis, but this site is the best source for pretty much any mast cell disorder information, told from the perspective of someone with a severe case.

http://www.mastcelldisease.com/

This is a much less scientific website, written from the perspective of someone with a bad case of MCAS.  She's been bloging about her life for a while, and has more recently tried starting an informative website.  Worth reading as while it's not a scientific look, it's also much less sterile of a perspective.  The first website's author tries to maintain her scientific objectivity which comes across very different.  There are other sites too of course, but these are I'm good places to read up some.  I'm going to list some common words you will run across and what they mean:

Degranulation:. The event where the mast cells release their payloads of mediators in large numbers due to a trigger.  This causes a major flare of symptoms, possibly up to anaphylactoid reactions.  This can go on for hours or even weeks.

Triggers:. Self explanatory, these are whatever cause degranulation with any mast cell disorder.  These can be foods, illness, sunlight, temperature changes, exercise smells, any type of stress physical or emotional.  Even positive emotions have been known to cause problems for some few. Etc.  Any allergen will act as a trigger if allergies are present.  Triggers tend to be cumulative.  If say, onion causes you problems, and so does exercise and sunlight, then you might be able to eat a little onion, so long as you don't then go exercise in the sun.  Or you could be out in the sun for a while, so long as you don't exercise and eat onion.  But 2 of the three would cause a reaction.   This additive nature is why it is absolutely critical to keep a food journal that you also write down what else you do. I.e. activities.  It's the best way to figure out what is causing you problems.

Mast cells:. These are part of the normal allergic process, and the mast cell disease process..  They are the immune system's "big guns". Though perhaps carpet bombing is a better metaphor for what they do.  They have granules of "mediators" like histamine, heparin, cytokines, leukotrines, and so on.  The have, and can release dozens of these very potent mediators.  In IgE allergies, what went wrong is your body makes the IgE antibodies for the wrong things, which trigger mast cells, basophils, eosinophils, or leukocytes to release their mediators.  Of these cells the mast cells have the overwhelming majority of the mediators.  With mast cell disease, they release these mediators without the need for IgE antibodies. Instead they release when you encounter your triggers.

Mastocytosis: extremely rare disorder that is characterized by the body making too many mast cells.  Symptoms are pretty much identical to MCAS.  Much easier to diagnose, however it's insanely rare at 1 in 200,000.

Urticaria Pigmentosa:. The cutaneous (skin) based type of mastocytosis.  It's characterized by spots on the skin that turn into a hive if you rub them.  These hives form only over the spots. They can be large spots or small ones. Some people have thousands, some have only a single spot.  This is the most easily identifiable mast cell disorder.

Dermatographia:. This condition is where you can draw in you skin with a blunt instrument and create hives.  This, unlike Urticaria Pigmentosa isn't restricted to just over spots.  This is often a symptom of a mast cell disorder.  With MCAS patients, the hives are often less raised but quite red. (Though not always)

MCAS: the most recently discovered and least well understood mast cell disorder.  Mast Cell Activation Syndrome was accepted by the World Health Organization in 2007.  They have not, as yet, have an official diagnostic criteria.  This leads to challenges in getting diagnosed.  The most informed places are research hospitals and clinics.  Most doctors and even allergists, have not yet heard much about it.  It is commonly comorbid with other conditions like Ehlers-danlos Syndrome, POTS, eosinophilic disorders, and seems to be often a secondary condition as it's not often found alone. 

Treatment for mast cell disorders revolves around suppressing the symptoms.  Epinephrine for anaphylaxis, antihistamines (both H1 and H2 types), leukotrine inhibitors, mast cell stabilizers etc.  Many of us mast cell patients are on high doses of the antihistamines.  I'm personally on 4 Zyrtec per day. 2 pills in the morning, 2 at night.  (Along with all the others, not explaining my full regimen, just that we often need excessive amounts if antihistamines). For this reason, among nanyothers, it's ill advised to attempt to self medicate with Zantac and Zyrtec (H2 and h1 inhibitors respectively) as you might need high doses and need to know what's safe for your body weight.  Treatment also involves limiting as many of your triggers as possible.  The treatment won't stop degranulation, just makes it more tolerable and less severe. At least that has been my own experience.  It also minimizes the daily minor level symptoms.  I feel a lot better than I did last year, but I've still had 2 degranulation episodes this year. They were my most mild yet.

This post will be spell checked tomorrow. I typed it on my phone, and autocorrect probably garbled done of it.  Will likely add more info then too.

Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on August 02, 2017, 09:20:31 AM
Thanks for taking the time to post this StridAst. Very well done. I appreciate your insight!

I have a basic working understanding of some of this stuff but not enough to make things in my head any clearer than mud.

This sounds a lot like me in many ways.

I will come back with a better reply after I have had time to digest the info a little more.

Title: Re: EE in Adults
Post by: spacecanada on August 04, 2017, 12:52:50 AM
Space, I think you said they ruled out EE for you? Or what happened with your testing?
My tests came back negative for EE.  My allergist initially wondered if it was a false negative because I avoided my trigger food (wheat) exceptionally well for the four months leading up to the test.  (I am someone used to total and complete avoidance, including trace amounts, after all.)  I was instructed to try wheat again at home and see if my symptoms returned, and they most definitely did, though not consistently.  My last two encounters with wheat gave me hives and other IgE-like symptoms, so I am really confused and scared now.  I have my annual allergist appointment in October; no sense booking an appointment before then.  I am not in a good place mentally to deal with it right now.  My own allergy mystery/saga continues...
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: GoingNuts on August 04, 2017, 06:48:42 AM
I'm glad you don't have EE, but sorry you don't have any more answers, SC.  So terribly frustrating.  :disappointed:
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on August 04, 2017, 05:01:23 PM
I'm sorry Space.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on November 18, 2017, 05:48:59 PM
I had a gastroscope (gastroscopy?) last week. He took biopsies but I haven't heard anything back yet. I'm not holding my breath for any answers. He said that visually everything looked good...I guess that is good. One doctor thinks the pain might be esophageal spasms, it does feel like a milder version of the two I had a few years back, so maybe. I'm not sure how food would be a trigger for spasms like that though. I have very severe reflux, which makes more sense but they don't occur at the same time which I would expect. And they are different types of pain -- reflux is not the same as the squeezing pain that leaves me doubled over. I need to make a follow up appointment for next week with my GI.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: spacecanada on November 18, 2017, 06:20:22 PM
I hope you can get some answers, Ciel. 
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: StridAst on November 18, 2017, 09:39:34 PM
Good luck, I hope you get answers!  My own endoscopy that I got the EoE diagnosis from looked mostly normal (some "washboard like contractions" was all he noticed.  Biopsies came back with counts per hpf in the 20s with anything over 15 eosinophils per hpf being a positive biopsy.

My previous symptom history includes a trip to the ER for chest pain, where they determined it "must just be heartburn." And I kept explaining "I've had heartburn.  This doesn't feel anything remotely like heartburn." Definitely was a waste of time and money.  Now I recognize it was most likely EoE related, but at the time I had no idea what was going on.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Macabre on November 19, 2017, 10:06:31 AM
StridAst can you describe the chest pain? Did it suddebely go away in the next day or so? What did it feel like?

Iíve been wondering about EoE for myself the last few weeks. But I didnít know about chest pain being a part of it. A couple of months ago I had this weird chest pain. I thought it was pleurisy maybe. It was diagnosed ast thisbcartikage thing with my sternum, but it went away suddenly. Anyway, if chest pain can be a part of EoE, I am wondering about that.

CIel, I hope you get some answers.
 
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: StridAst on November 19, 2017, 01:03:16 PM
Kind of hard to describe.  This was around 5-6 years ago. (Diagnosed with scope and biopsy in February 2016 so almost 2 years ago). IIRC the pain felt like it was inside my chest, but wasn't a burning kind of pain.  Arm movement didn't effect it and it felt more internal than the pain when I once dislocated my collar bone or sublux a rib.  I guess it kind of felt like a bad muscle cramp does, but not in a place where moving made it worse or better.  (Unlike every muscle cramp I've otherwise had)

The pain persisted for several days, perhaps 4 or 5 days then simply stopped. A week later the pain started up again, then stopped again after a several days (maybe a week) I've not felt it since.  My asthma was flaring hard at the same time, so when the doctors were repeatedly asking if I felt short of breath it got frustrating and old quick.

As for chest pain being a symptom of Eosinophilic Esophagitis,. It's a commonly listed symptom.

https://www.mayoclinic.org/diseases-conditions/eosinophilic-esophagitis/basics/symptoms/con-20035681

Remember that the esophagus is smooth muscle, and inflammation can cause muscle spasms.  Which = painful cramps.  EoE = inflammation.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Macabre on November 19, 2017, 06:20:22 PM
Thanks. I was looking at that link this morning. That backflow thingóit happened several times a week for me. I first described it here in 2012 or 2013.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on December 04, 2017, 08:08:56 PM
I have my follow up with my GI doctor tomorrow afternoon. Iím not sure whatíll be next if he just repeats that it is reflux and that I need to lose weight and that will make it better. Maybe thatís a factor but I donít believe it is the whole story. And Iíve never heard of reflux described the way this pain feels. Your description was much closer StridAst. Squeezing, radiating, nauseating, sharpish...Iím almost convinced that the pain is esophageal spasms.

And besides, even if it is reflux, if it is to the point of vomiting on average one to three/four times a week ó so severely that it comes out of my mouth and my nose; that my throat tissue bleeds; that there is a copious amount of mucus, and probably bile, coming up, tinged with blood; that I end up with major petechiae all over my face every single time ó this is on strong PPI meds twice daily. And I do believe the vomiting is because of GERD, but trouble swallowing is triggering it especially after swallowing pills. Maybe reflux can cause me to have difficulty swallowing, and set off spasms somehow...being told that in no way helps identify the cause of the pain or figure out how to reduce the abdominal pain...I am sometimes able to mostly ignore the pain because it is mild and other times I am doubled over and debilitated. I have been dealing with chronic headaches and migraines most of my life and I am used to functioning with a level of facial pain/eye pain. The abdominal pain is a different but equally miserable beast. I am very worried that he wonít have anything more useful to say than to tell me I need to lose weight.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: StridAst on December 05, 2017, 12:57:42 AM
Well good luck and I hope you get some answers.  If you get told it's EoE, ask the doctor about H2 antihistamines as opposed to PPIs.  (I personally see a more significant reduction in esophageal symptoms with the H1 H2 antihistamine combo, but that's also normal with mast cell disease. 
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: GoingNuts on December 05, 2017, 06:08:04 AM
Good luck today Ciel!   :crossed: that you get some good information, and a way to move forward and feel better.   :grouphug:
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: spacecanada on December 05, 2017, 02:12:17 PM
Thinking of you today, Ciel!
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on December 05, 2017, 06:35:09 PM
I waited 90 minutes for a 2 minute appointment. I was told everything was fine/negative and given a prescription for yet another PPI to try and instructed to book another follow-up appointment in 2 months.

He said my esophagus looked normal, no esophagitis, no erosion, no narrowing, and the biopsy was negative. He though spasms were unlikely.

I guess it's back to my allergist to talk about mast cell disorders. Except I brought it up last time I was there and she didn't think it could be that.

So I'm stuck with the pain for the foreseeable future. And I feel like a freak.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: StridAst on December 05, 2017, 08:11:23 PM
:( glad to hear you dont have EoE, but sorry to hear you also have no answers.

Regarding mast cell disease.  What all symptoms do you have if you don't mind.?  With a mast cell disorder, you would expect to see two separate groups of symptoms.  One group of chronic complaints (typically with either skin or gastrointestinal issues). Then acute complaints that might appear random for the trigger.  Non food based triggers are the most suggestive but their presence or pack there of is far from conclusive on it's own.

Symptoms can be related to any bodily system.  Gi, skin, mucous membranes are the most commonly affected, but respiratory, joints, cardiovascular, musculoskeletal, and neurological complaints are all common.  Blood cell count can be off too. (my red blood cell count is too high, but my lymphocyte count is low. My IgE is elevated a bit (I have true food allergies too) but my IgA is well below the bottom of the normal range.. As examples)

. So list any common symptoms you get, and any odd test results too.

Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: spacecanada on December 06, 2017, 12:28:03 PM
 :grouphug: Ciel
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on December 07, 2017, 09:18:52 PM
Thanks AstridAst and Space, much appreciated. I have been busy dealing with grandmother stuff for the last two days but I will try to answer all questions by tomorrow.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: GoingNuts on December 08, 2017, 08:41:52 AM
You're not a freak Ciel - not at all.  A lot of digestive issues are poorly understood, and just because your symptoms don't fit a narrow diagnostic framework doesn't mean they don't exist, KWIM?  Many people have similar complaints - they are in pain, very uncomfortable and feel ill, but MD's can't explain why.  They're not freaks, it's just that even modern medicine has limits, if that makes sense.

Keep pursuing it.  Don't give up - you are definitely not alone.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: spacecanada on December 08, 2017, 11:42:20 AM
Well said, GN! 

I felt like I needed to hear that too, actually.  So thank you, GN.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on December 08, 2017, 04:42:32 PM
I went to fill my new prescription and itís not covered. I didnít get it because there is no way I can afford it out of pocket.  :-[

I think he is looking for Esophageal Hypersensitivity Disorder, or I hope he is because it seems to be pretty much exactly what I have been describing and my test results would fit with that too.

Hypertensive peristalsis is another one that is very similar (or maybe the same/overlapping, Iím not sure yet).

Quote
Risk factors

Esophageal spasms are a rare condition. They tend to occur in people between the ages of 60 and 80, and may be associated with gastroesophageal reflux disease (GERD).

Other factors that can increase the risk of esophageal spasms include:

High blood pressure
Anxiety or depression
Drinking red wine or consuming very hot or very cold foods or drinks

Above quote is from The Mayo Clinic.


Esophageal hypersensitivity can be exacerbated by GERD. It can be linked with sensory integration and processing disorders, and also with affective disorders (anxiety, depression, panic). I can put a check mark in every single box.

I do not have high blood pressure. On the contrary, it actually trends on the low side and a recent ECG showed sinus bradycardia).

I do have excess weight to lose.

I donít drink alcohol.

I have always had a problem with cold liquids triggering a twitchy throat, as I call it. It results in an asthmatic cough. I thought it was related to my asthma or my cold urticaria. I try to avoid drinking anything too cold (I have sensitive teeth anyway).

This has been going on for years and started when I was in my 20s.

I thought I saw a mention of a link between Esophageal hypersensitivity and cold & cholinergic alleric diagnoses but I canít find it now. I have both of these.

I tend to have minor ďreactionsĒ with physical triggers like emotion, stress, changes in body temperature, exercise, injury, pressure. Usually with flushing, facial hives (more widespread from water temperature and pressure in the shower, or exactly where the blood pressure cuff has been), itching, heightened anxiety, swelling that is usually confined to my ears and hands, and liquid diarrhea (sorry for the grossness).

Except for exercise - I had one full blown anaphylactic episode after prolonged intense exercise (I had been ignoring the minor symptoms not expecting them to continue building in intensity).

I have had anaphylaxis to peanuts a few times, facial swelling with cashews and pistachios, contact hives and swelling from shrimp (Iíve never eaten it). Skin reactions to raw eggs and oral burning and itching from mangoes. I am allergic to latex (very mild) and acetaminophen. I have severe GI symptoms and anaphylaxis presents without hives or swelling most times (unless itís with exercise).

I also have chronic GI issues that seem unrelated to allergies or GERD. A little like IBS but without the constipation.

And very extreme and violent vomiting regardless of the cause.

My family is being followed for Lynch syndrome - to date all colonoscopies and gastroscopies have been clear and normal. Biopsies for celiac disease and EE were both negative.

I was off gluten for something like 10 years, and it seemed to help but didnít fix a lot of the issues. It did finally clear up a bumpy itchy Ďrashí that I get on my arms, legs and scalp. Which has come back since reintroducing gluten.

Sorry this is so muddled and disjointed! And thanks for the not a freak sentiment, itís hard to feel it, though I do appreciate your insight. My other major issues arenít even covered in this post; severe headaches and facial pain, Ďdisordered eating patternsí, and chronic depression and anxiety.

Putting these here for reference:

Esophageal Hypersensitivity

Esophageal Spasms

Hypertensive Peristalsis
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: StridAst on December 10, 2017, 10:49:36 AM
Ok, with Mast Call Disease, you would expect to see two separate patterns.  One of chronic (constant) symptoms (this would be your recurring GI stuff), and a pattern of acute symptoms. (Your reactions).   You definitely fit that part of it.  The most commonly affected areas are skin and GI tract. That also fits.  Dermatographia is very common (though far from ubiquitous) in mast cell patients.  This is where you can create hives or else red welts on your skin from mild-medium pressure.  If you can rub your skin once with the back end of a pen (blunt with no corners to scratch) and it turns red or produces hives, this is dermatographia.  My own skin just goes red, no obvious raised hive, just a bright red stripe.  It sounds likely in your case (you mentioned pressure hives with a blood pressure cuff)

 You would also expect triggers for the acute reactions to fall well outside of normal "allergy" triggers (proteins mostly for normal allergies.). The more common triggers are exercise, temperature (heat or cold),  sunlight, stress including emotional stress, harsh smells (perfume, soap, nail polish, etc).  You definitely fit that part too.

There's another thing that's a common comorbid thing with mast cell disease.  It's called Ehlers-Danlos Syndrome.  It's a genetic disease that runs in families and causes hypermobility (double jointed) and joint problems, as well as GI problems.  It's most often autosomal dominant. So one parent with it = a 50% chance for each child to inherit it.  You expect this to run in families, so you would expect multiple people over more than one generation to be on the flexible side, with joint subluxations or dislocations, and GI problems.  Check how you fit with the beighton score here:. https://www.ehlers-danlos.com/assessing-joint-hypermobility/

Stretchy skin is common as well.

With my family, I'm the least hypermobile in my immediate family I only score a 2.  But you add the TMJ, history of subluxations (partial dislocations) in both knees and left wrist, and the neck vertebrae instability, and it starts to paint a picture, especially when you add my very hypermobile brother and mother, and grandfather, uncle and nephews. (Uncle has needed a wheelchair off and on for years, grandfather needed a mobility scooter and couldn't walk unaided for the last 15 years of his life)  EDS is a spectrum disorder.  People with the more common types can have a mild case, or a severe case, or anything in between.  A mild parent can have severely impacted children or a severely impacted parent can have mildly impacted children.  It's all random.  Basicly EDS is a connective tissue disorder where your collagen is built wrong and is too flexible so you get bendy joints.  Symptoms get worse as you age, but very slowly.

I mostly listed EDS as it's a family related thing and is present in a large subset of people with mast cell disease of any subtype.  It's rarely diagnosed, but that has more to do with a lack of knowledge in the medical industry (just like mast cell disease)

I would *highly* recommend you download this paper and read it:
https://www.novapublishers.com/catalog/product_info.php?products_id=42603

It's a research paper on MCAS, but the symptoms fit all mast cell disease subtypes.

The best way to look at mast cell disease, is when the Allergic Pathway is no longer tied to protein (or sugar in the example of lone star tick bites) the triggers can be random instead.  Random is kind of the word to best describe mast cell disease.  Which symptoms you get are random.  Which triggers you get are random.  The severity is random.  But *everything* is cumulative.  Trigger A plus trigger B = more severe symptoms than A or B by themselves.   What also sucks about them is you can have your symptoms/triggers change over time.  Which can make us start to doubt our sanity quite easily. 

The thing is, this stuff is testable.  There are special blood tests, and 24 hour urine tests to look for this stuff.   However *every single thing* they look for is heat sensitive.  So the lab must be properly informed on how to handle the samples or you get a false negative.  This is part of the reason you need to search and find a doctor in your area that knows anything about mast cell disease.  Facebook has mast cell disease support groups, searching for one in your area is a great way to locate doctors familiar with it.  In Utah a Google search for "mast cell activation syndrome Utah" brings up an allergist in Logan, but misses the University of Utah hospital's allergy/immunology department which is the best place to go here.  So Google can be hit or miss.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on December 10, 2017, 08:23:18 PM
Thanks StridAst. You are remarkably good at explaining things in a way that is easier to understand. Thank you so much...Iím very glad that you are here (though sorry that you have need to know all this stuff).

Iím working on reading the paper you recommended. A lot sounds right, but also makes me think that perhaps Iím just crazy and desperately trying to make things ďfitĒ just to have an answer.

I would say I am naturally flexible, but not to any extremes. I was always naturally athletic as well and they seemed to go together. You would never guess that looking at me now though with so much weight gain. Even now, my yoga teacher sometimes comments that I am surprisingly more flexible than I look.

I mentioned headaches and facial pain - thatís from TMJ and causes pain on the right side of my head and face that literally never goes away. Thankfully it varies in intensity so itís not always at migraine level. The nerve behind my eye is chronically inflamed and makes it painful to move that eye. I have had episodes of occipital and trigeminal neuralgia, recurrent ear infections and sinus inflammation, tooth and jaw pain that are all attributed to the TMJ.

My joints arenít particularly weak and Iíve only ever had one sprain and that was while the ankle was already healing from a more serious injury. Both of my sisters can hyperextend their elbows and one can also do it to her knees. One sister has broken both elbows and the other has had knees problems. My thumbs are the only joints of mine that extend a little further than average but I caní Touch my wrist or anything like that. My hips seem to get out of place fairly often, always with walking longer distances or over uneven terrain like snow or sand. I have issues with repetitive motion in my hand and wrists as well.

On that test I only score a 2, possibly 3.

I looked up MCAS testing in my area. It is not covered by the province and looks to cost over $1000.


Typing this stuff out is helping me organize myself mentally. One good thing out of my long-windedness!
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on December 11, 2017, 08:35:32 AM
So, for example, this morning.

I was outside for about 45 min. Itís cold, but not obscenely cold. Temp is -8 / feels like -13 with the windchill and it is snowing lightly. Not too windy.

I was walking, and not even very fast. I have hives under my chin, both cheeks and one earlobe. And on my rear end, my thighs and my shoulders/upper arms.

I was wearing 2 layers plus my jacket, mittens, a hat and a scarf.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: StridAst on December 11, 2017, 11:43:14 PM
Yeah,  that's definitely not just an allergy.  If the only odd allergic type reaction you got was cold, than it's less suggestive of mast cell issues.   Throw in the exercise induced anaphylaxis and the other minor reactions and the pattern is there.  Tests can answer it best,  but that price tag is brutal. :( 

Something to consider is the treatment for mast cell disease is two types of antihistamines.  H1 and H2 types together.  Zyrtec for the H1 and Zantac for the H2 are the most common.  While they are over the counter drugs, the dosages are typically not OTC normal doses.  (I weigh 82kg and my immunologist has me take 1-2 Zyrtec twice daily as an example.  I didn't see much benefit at 1 Zyrtec per day.  At the max dose of 4 per day 95% of the normally constant unrelenting itching I used to deal with is gone.  The major flares (anxiety, nausea, severe diarrhea, sweating, fatigue, flushing, asthma, dry mouth, etc) that I have had since the high doses were started are much milder.  (They still suck though). 

There's also quercetin.  It's an OTC supplement and a known mast cell stabilizer.  So between Zyrtec, Zantac, and quercetin, there are 3 OTC things you could take to help with symptoms.  Talk to a doctor before trying anything if you are taking any prescriptions.  As an example, if you are on any proton pump inhibitors (like Prilosec) for the GI stuff, you don't want a H2 antihistamine and PPI both.

Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on December 12, 2017, 11:16:08 AM
Iím so glad to hear that combo is helping you! But yeah, definitely still sucks.

I am on pantoprazole magnesium 40mg twice daily and still have breakthrough symptoms. My GI doctor just prescribed dexlansoprazole 60mg once daily (extended release) but I havenít tried it because itís not covered and my current financial situation is beyond tight.

My GP once told me to take Zantac (H2) when I have breakthrough symptoms because itís a different class of medication than the PPIs. She recommended Gaviscon as well. I have done the Gaviscon but I donít think I have tried adding Zantac so I need to check the safety of that again. Thanks for the reminder!

I was on Reactine (cetirizine - I think that is the same as Zyrtec) once daily for a long time but ended up stopping because it wasnít really doing anything and I have a handful of other meds I take daily.

Maybe itís time to revisit the options with my doctor.



Re: dermatographia, Iím unclear if I have it or not. If there is a spectrum of severity then I probably do have a mild version. I donít have anything near to the photos of skin writing/art that you can see online. A superficial cut or scratch usually welts up just at the site of the cut. We called them wormy cuts when I was little, lol. The pen scratch test usually produces a bright red mark that lasts for at least 30 minutes. Sometimes it gets slightly raised but doesnít spread and isnít very itchy at all, so I donít know what that means. If I have a bigger injury to my skin I often develop a blistery rash around the site or edges of the cut or scrape or blister while it is healing, and it takes forever to heal. I thought it was the bandaids because I do react to the adhesives over time, as well as latex but it happens when I donít wear a bandaid at all. When I had surgery I had tegraderm on the incisions for a week and ended up with the same blistery rash, but more welty and it spread well beyond where the adhesive was in contact with my skin.

However, skin prick tests always come back 100% negative, sometimes the control is also negative and if it does react itís very slight.

In summary: I am a conundrum.


But things might be starting to make some sense. Iím just worried my doctor will think Iím making things up or something because I keep asking about different things.

StridAst, you have been more helpful than I can express. I am so grateful.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on December 12, 2017, 03:20:11 PM
Iíve Spent the last few hours going over the diagnostic criteria for EDS.

On one hand, it seems to neatly connect many of my issues. On the other hand, I still have no clue.

Of the list of 100 diagnostic criteria at Ehlers Danlos for Dummies;

38 - yes
22 - possible/probable
40 - no


Still working on that 77 page article on MCAS.

Sigh.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: StridAst on December 12, 2017, 09:37:51 PM
The EDS is mostly a possible connection if there is family involvement.  Mostly something to consider if there is family history of joint complications.  I strongly suspect it with my mom's side of our family, but nobody in our family is diagnosed.  Worth looking into if you feel like you fit, but it's one of those things that might or might not be present. (Though if present it would *heavily* reinforce a case for MCAS.)

Re: dermatographia.  On page 10 of that 77 page document it lists the way dermatographia tends to present in MCAS patients:

Another very common dermatologic finding in MCAS patients is dermatographism. [48]
Sometimes simple removal of clothing makes it apparent, but integrating a simple light
scratch test into the physicianís standard physical exam is an easy thing to do. The
dermatographism of MCAS rarely is so vigorous as to manifest hives; instead, usually only
erythroderma is seen in the track of the scratch, arising within 1-30 seconds and often
persisting in full splendor for 5, 10, or even 15 minutes or longer.

Your description fits that easily.  It's a mild form of dermatographia, but the mild form is what's common with MCAS.  (Though far from universal). Also, this is the same way my own skin responds.  Including cuts and especially scrapes.  Just red marks, but rarely raised hives.  (Though occasionally mine do the hive thing, but usually just when something breaks my skin). Mine itch, but then I itch all the time and at the slightest provocation.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: Ciel on December 14, 2017, 02:02:12 PM
Oh yes, that does sound like me, including the part where you say you sometimes get raised welt with broken skin.

I already had a doctorís appointment next week so I will talk to her then.

My mind is overloaded and I am feeling overwhelmed so Iím going to try to stop thinking too much until I see the GP.

Iím most worried that I am so desperate for an answer that I am subconsciously squeezing and twisting my thoughts to make the pieces seem to feet. Iím not really trusting my objectivity right now.
Title: Re: EE and/or Mast Cell Disorders in Adults
Post by: StridAst on December 14, 2017, 09:07:44 PM
Yeah, I totally know the feeling.  It's hard to be objective when you want answers so much. Good luck!  And I'm sorry you are feeling overwhelmed.  :(