Does this sound like Mast cell issues/Mastocytosis?

[Fogbuster]

After many years of fogginess and going from one direction to another, I'm for the first time confident I've found the underlying cause of my CFS/ME symptoms; being primarily severe cognitive dysfunction and this horrible wired state, both of which gets worse after ingesting substances.

So far after much experimentation the wired state has reduced quite a lot (more than the C. dysfunction) since taking out gluten and dairy(worst culprits), keeping low sugar, low veg, high starch and using schizandra. But still I am plagued with this baseline constant C. dysfunction and wired state which fluctuates throughout the day; the severity depends on what substances I ingest.

When I eat, this is what occurs: "reaction' immediate, increased speccy/fuzzy vision, heart rate, shaking, restricted breathing, pupils dilate/constrict at super speed, inflamed nostrils, mood alteration/anxiety, wired feeling, increased irritability, cognitive dysfunction, increased sound sensitivity and aching of joints.


I've been diagnosed with EDS 3 and TMJ.
Been tested for Lyme, RA and MS
Had a histamine test at Biolab, London - came back negative
I dont get any significant skin issues


Symptoms

- Body all over is constantly tremoring in varying intensities (depending on what i ingested)
- Tensing muscles brings on rapid tremors
- Pupils constrict and dilate at super speed
- red patchy hands
- Constant fuzzy/specy vision
- General weakness/fatigue
- Inflamed eusophagus (when I ingest marijuana and keep it in my mouth marijuana it is agony)
- Dermatographia (only when I shower, looks like i've gone through a bush backwards sometimes!)
- Popping ears/pressure
- Sound sensitivity (gets much worse when I eat Gluten and Dairy)
- stretch marks
- Hair loss
- Spots
- Sometimes swollen face
- itchiness
- drop in blood pressure after exercise (i think...it was noted when I was tested for POTS on treadmill)
- Restricted breathing (gets worse after eating)
- Rhinitis, goes when I fast
- flushing when nervous (severity is related to how recently I ate)
- Problems getting to sleep
- hypersensitive stress response (gets alot worse when i've eaten, gets alot better when i fast)
- Achy wrist and knee joints (Averagely fit but when I go up even a slight gradient on a hill on my bike my knees are in agony after only a few seconds, suspected arthritis or osteoporosis.)

Again, pretty much all these symptoms get worse when I ingest food and much worse when I ingest the substances below (some depend on quantity)


Things I react to/set symptoms off: (increased wired feeling and cognitive dysfunction)

- Nuts
- Sugar (the more the worse it gets) and (the more slow releasing the sugars the better eg bread)
- Gluten/Dairy/Soy (Dairy: some reason cheese is worst)
- Marijuana
- Cigarettes (By far worst)
- Poor sleep
- All vegetables
- Stress (very minor stressors set off stress response, very difficult having arguments without looking like Im about to lose the plot)
- Alcohol
- Antidepressant and other medications
- Caffeine (second worst)
- Mild intensive exercise (More than 15 press ups causes symptoms to occur and short burst of running)
- Hot baths/showers
- Perfumes/hair dyes
- Most teas (even decaf, salicylates)
- Lacto free cheese (is that strange?)
- Smoked meat
- Fish
- eggs

Your opinions and knowledge would be greatly appreciated.

Best wishes
JD

 

[justy]

Just bumping this for you. Sorry I don't have any answers for you. I think there is a Mast Cell specialist in London? also there is a patient org in the UK - have you tried contacting them?

Could it be caused by the EDS - do you see a specialist for this?
All so difficult I know...

Good luck with it all.

 

[Fogbuster]

Thanks @justy .

I saw this gentleman (http://www.londonallergyspecialists.co.uk/prof-jonathan-brostoff) for my gut problems, with the belief that that was causing all my symptoms (eg leaky gut, sibo etc). I've now obviously gone down a completely different avenue, but guess what this guy funnily enough might be the person who I should see, as his expertise is in allergy and clinical immunology.

He was the man who diagnosed me with EDS 3, but basically poo pooed it as just nothing to worry about...

TMJ and EDS 3 are both connective tissue disorders so I feel the puzzle is slowly coming together.

I think I may put this thread in general discussion If I don't get any responses.

@justy, if you could point me in the right direction of who this mast cell specialist is I would be very greatful.

Best wishes
Jamie

 

[justy]

Hi Jamie, sorry I don't remember where I read it...

there is this UK group - in the past I have sent e mails to people who chair these kind of groups and they are usually always happy to help with info on Dr's etc.

http://www.ukmasto.org/index.html

Did you see Professor Brostoff through the NHS? if so can you go back and see him - he seems like a good bet as it looks like you are having some allergy issues.

I have heard it said before that EDS 3 is not worth worrying about, but I believe it can be responsible for a whole host of symptoms - @allyann has a lot of threads on the subject and may want to chip in here.

TC, Justy.

 

[wootah88]

@Fogbuster any luck with diagnosing? A lot of those symptoms can be mast cell related so I wouldn't be surprised in the least of that was a contributing factor.

 

[wootah88]

Also I have TERRRIBLE wired and surging feeling as well as cognitive issues and I'm being tested for MCAS.

 

[melamine]

@Fogbuster - I have the same pattern of symptoms as you and many of the symptoms themselves. I was recently told I should look into mast cell disorders because of those, and found a Mastocytosis specialty center in Boston that I've been thinking of asking my doctor for a referral to when I see her soon.

All of my symptoms got much worse following several dental surgeries in the past couple years. The hypersensitivity that was triggered following each one seemed to make me much more sensitive to everything after that, and then it takes months for symptoms to improve. For me, however, the wired symptoms tend to go a step further to increased numbness and tingling, followed by increased nerve damage, which has remained permanent.

There are two additional reasons I think I should be tested. A few years ago an allergist named one of my symptoms "cold allergy," He never did any testing so that it could be confirmed and documented, which would have been easy. And like so many negligent doctor's I've seen, failed to even reference it.

I have also experienced cardiotoxic hypotension several times. Two of the occasions involved Darvon or Darvocet + an antibiotic and two involved dental anesthetic + antibiotic and maybe Darvon or Darvocet. Following the first incident I noticed immediate changes in my (rather stable post-viral CFS) health and new symptoms began appearing from then on. It was also the first time I got bad heart palpitations from epinephrine in an anesthetic.

 

[halcyon]

I've not read a great deal about mastocytosis, but it sounds like the first "easy" step towards diagnosis is to get a serum tryptase test, preferably within an hour or so of having a reaction to a potential allergen. It seems like an interesting possibility for a lot of us as the symptoms of mastocytosis dovetail quite a bit with ME.

 

[melamine]

@halcyon - CBC is a foundational test. If I read correctly, tryptase measurement is only useful for those who get anaphylactic reactions, which not all of us do. Abdominal ultrasound is used to look for organomegaly of a kind that cannot be palpated, particularly in liver and spleen. Bone marrow biopsy is very useful in looking for number and type of mast cells. It's another of those difficult to diagnose conditions.

I am editing this post after further reading, because I am no longer sure if the nature of anaphylaxis is really so cut and dry. If the individual components of the common description of it are considered by themselves in various degrees, and not necessarily all at the same time, then some manifestation of anaphylaxis might apply to more of us.

 

[halcyon]

What would the expected abnormalities be on a CBC? I was curious about the possibility of having it without the anaphylactoid reactions, I definitely don't have anything like that.

 

[melamine]

What would the expected abnormalities be on a CBC? I was curious about the possibility of having it without the anaphylactoid reactions, I definitely don't have anything like that.

I'm not familiar enough with the diagnosis myself to answer your question, but I found some good information on this page that partly explains, and also some of the diagnostic challenges: http://meandmymastcells.com/category/the-diagnosis/

 

[Sherlock]

I've not read a great deal about mastocytosis, but it sounds like the first "easy" step towards diagnosis is to get a serum tryptase test, preferably within an hour or so of having a reaction to a potential allergen. It seems like an interesting possibility for a lot of us as the symptoms of mastocytosis dovetail quite a bit with ME.

Dr. Anne Maitland mentions in her video that a few of her patients have bad symptoms but normal tryptase.

I'd say that a very available and cheap test would be to take niacin and see how much a person flushes. Then a few days later take quercetin before the niacin and observe how well it works to abolish the flush.

 

[SickOfSickness]

If you feel much better on Zantac (Ranitidine) and Zyrtec (Cetirizine) you probably have mast cell disease. They are over the counter. Some people need to switch to different versions (like Pepcid instead of Zantac) because of side effects but at least you will know, and get some relief of symptoms. Some people feel the brand names are better than generic.

 

[NilaJones]

I'd say that a very available and cheap test would be to take niacin and see how much a person flushes. Then a few days later take quercetin before the niacin and observe how well it works to abolish the flush.

Could you explain this further? Why niacin, and why quercitin?

Thank you .

 

[NilaJones]

He was the man who diagnosed me with EDS 3, but basically poo pooed it as just nothing to worry about...

This is common in docs who are not knowledgeable about EDS3. They think it is 'benign'.

TMJ and EDS 3 are both connective tissue disorders so I feel the puzzle is slowly coming together.

Yes, EDS3 often causes TMJ pain and dysfunction.

You might like to check out the Inspire EDS forum!

 

[Sherlock]

Could you explain this further? Why niacin, and why quercitin?

Thank you .

An average person might get the niacin flush on the head and neck only. But a person with overactive mast cells can get the flush down to their ankles. Since quercetin effectively blocks the flushing, that's a demonstration of how quercetin might also help in general as an anti-mast-cell therapy. Or try cloves, tart cherry, luteolin.

People have taken video of themselves flushing:
https://www.youtube.com/results?search_query=niacin flush

 

[Gingergrrl]

@melamine can you explain what you mean by "Cardiotoxic hypotension?" Sorry I can't get my phone to quote your post right now!

I literally know nothing about mast cell disorders and was wondering if sensitivity to meds or foods that were initially okay would fall in this category?

I have never had hives, rash, or anaphylactic shock so this may not pertain to me but is making me want more info.

Thanks!

 

[acrosstheveil]

wow, I have almost the exact same intolerances/symptoms as you OP. I've tried everything I just keep reacting to more and more stuff. I know there will be a day where I can't eat or do anything because of this. It's beyond scary.

 

[melamine]

Hi Gingergrrl - Cardiotoxic hypotension: when a (drug) causes a steady and precipitous drop in blood pressure. It can be deadly if severe enough and not treated. My first one followed some outpatient surgery. As I was checking out I started feeling faint and then unsteady and like I was starting to black out. I was offered a dark place to lie down until I felt better, but offered no further help. No doctor I reported it to afterward ever told me what it was.

It was years later and after two more incidents under similar circumstances that I discovered the identity of it for myself in researching the symptoms. I only made it to ER during the third event, which was under similar circumstances a little more than 10 years after the first. Because the second event did not involve dental anesthetic and the other two did, I cannot know whether anesthetic had any exacerbating effect on the antibiotic and/or painkiller that seemed to trigger the other two. I had probably taken those same things for other dental surgeries between those times and did not get the same reaction, which is the big confounding factor. I also didn't keep track of what I had taken and was seeing different dentists and specialists for different procedures. I believe all three painkillers were of an opioid class - probably Darvon, Darvocet, Tramadol, and am wondering now if these could have been the cause. Something else to investigate.

As symptoms have accumulated I have noticed a reactionary pattern in association with dental surgeries in particular, where they seem to be instigating delayed reactions to foods that produce no identifying gut symptoms, only what I can best describe as neuroendocrine - combination of loss of homeostasis (to the extent that it was), greatly increased fatigue, chronic excitotoxic nervous system symptoms, often a revival of pain somewhere, and sometimes other symptoms. I am now wondering if the fermented foods I was eating much more frequently following the surgeries/antibiotic use to restore my gut bacteria may have contributed. I was eating them fairly often before some of the surgeries, so those kinds of foods alone are not the cause. Additionally, elimination diets of a non-histamine type have never had any effect on my health that was not worsened by them, if anything.

 

[melamine]

But a person with overactive mast cells can get the flush down to their ankles.

I definitely get this.