EE and/or Mast Cell Disorders in Adults

[Macabre]

StridAst can you describe the chest pain? Did it suddebely go away in the next day or so? What did it feel like?

I've been wondering about EoE for myself the last few weeks. But I didn't 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.

[StridAst]

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.

[Macabre]

Thanks. I was looking at that link this morning. That backflow thing—it happened several times a week for me. I first described it here in 2012 or 2013.

[Ciel]

I have my follow up with my GI doctor tomorrow afternoon. I'm not sure what'll be next if he just repeats that it is reflux and that I need to lose weight and that will make it better. Maybe that's a factor but I don't believe it is the whole story. And I've never heard of reflux described the way this pain feels. Your description was much closer StridAst. Squeezing, radiating, nauseating, sharpish...I'm 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 — 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 — 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 won't have anything more useful to say than to tell me I need to lose weight.

[StridAst]

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. 

[GoingNuts]

Good luck today Ciel!    that you get some good information, and a way to move forward and feel better.   

[spacecanada]

Thinking of you today, Ciel!

[Ciel]

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.

[StridAst]

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.

[spacecanada]

  Ciel

[Ciel]

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.

[GoingNuts]

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.

[spacecanada]

Well said, GN! 

I felt like I needed to hear that too, actually.  So thank you, GN.

[Ciel]

I went to fill my new prescription and it's not covered. I didn't 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, I'm not sure yet).

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 don't 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 can't find it now. I have both of these.

I tend to have minor "reactions" 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 (I've 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 it's 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 didn't fix a lot of the issues. It did finally clear up a bumpy itchy 'rash' 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, it's hard to feel it, though I do appreciate your insight. My other major issues aren't even covered in this post; severe headaches and facial pain, 'disordered eating patterns', and chronic depression and anxiety.

Putting these here for reference:

Esophageal Hypersensitivity

Esophageal Spasms

Hypertensive Peristalsis

[StridAst]

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.