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Topic Summary

Posted 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.  :(
Posted 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.
Posted 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.
Posted 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.

Posted 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.
Posted 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.

Posted 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.
Posted 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!
Posted 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:

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.
Posted 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).

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
Posted 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.
Posted 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.
Posted 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.
Posted by: spacecanada
« on: December 06, 2017, 12:28:03 PM »

 :grouphug: Ciel
Posted 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.