It has taken a bit of time and a nap to get back to this sorry Justy I was confused in the message above. I was diagnosed with MCS Multiple Chemical Sensitivity not MCAS I easily get lost in acronyms as my memory is so bad lately.
I have had a tooth infection that got out of control and had dental surgery 4 rounds of antibiotics and what I think was a seizure due to ultra caine.. dentist thinks it was just my movement disorder. It has been a rough couple of months hoping my memory issues are related to the events above hoping to bounce back with enough recovery time.
It takes me a long time to recover from these reactions... and my thinking will likely be impaired hit and miss for a time... how long is unknown.
All in a way to explain the post above...
I did read some about MCAS on this site and do have a problem with the BH4 gene if I recall correctly.
I took a look at MCAS here too
http://ohtwist.com/what-is-mcad/
found I had that coma after eating for a long time but it seems to have eased now... the study mentioned brings up the trypsin or something like it again...
bit to read if you like from that site... I don't know what I have would not doubt it is this
"
Dr. Milner’s study did find a subset of patients who exhibited an elevated baseline tryptase
in a familial inheritance pattern, who all also exhibited signs of hypermobility characteristic of Hypermobile type Ehlers-Danlos and many of the comorbidities. That said,
not all patients with hEDS have an elevated baseline tryptase, and I’m not sure if all patients with an elevated trpytase are also hypermobile –
he only studied those who are. You can learn more about this subset here:
By the way, Dr. Milner’s term for this comorbidity he calls “Familial Tryptasemia”,
is not a new disease technically. And, you can’t get diagnosed with it – yet. (Commercial testing is not yet available for this, nor is there a billing code.) It’s just a study result so far, but a solid one. Many other patients will still have what we affectionately call “The Trifecta” of EDS, MCAD and POTS or other
dysautonomia forms still, even in the absence of “Familial Tryptasemia”. Again, it just explains
one small subset. We still need to explain the majority, and
more.
Patients with MCAD are those people who
may have some (or even lots of) “traditional” common IgE-mediated pollen, food and drug allergies, though not always! M
any are totally negative for any “traditional” IgE-mediated allergies you can test for.
But we often also have additional food and drug and environmental
sensitivities and intolerances (
IgG and IgA mediated reactions that don’t tend to require epi-pen use) AND…
…many reactions of
any severity (including
any grade of anaphylaxis) to foods and drugs
and also non-proteins like scents, dyes, chemicals, sunlight and stress not explained by either IgE or IgG as well. This even includes
electromagnetic radiation for some.
Some get mis-diagnosed with “multiple chemical sensitivity”, porphyria or idiopathic anaphylaxis among other things besides the common throw-away mental health diagnoses of depression, anxiety and hypochondria.
Those in a hurry to find the best articles for your doctors, please see my MCAD Resources, else read on to learn more about MCAD and when to suspect it.
From the gene mutation link above ...this is the gene and possible treatment maybe to come.
"
Armed with this clue, the researchers then went back through thousands of patient records for healthy people. When they looked at the DNA results of people with high tryptase levels, they found that all of them also had the TPSAB1 mutation. The scientists then interviewed a number of these supposedly hearty specimens and found that all of them were living with symptoms that sounded suspiciously similar to those of EDS-HT, POTS, and MCAS. They'd just never been diagnosed. (This is unsurprising—the average time to diagnosis for a person with EDS-HT is
10 years.)
In short, Milner and his team had discovered a genetic biomarker for Ehlers-Danlos Syndrome. Now, EDS-HT is a very variable condition, and the few experts that do exist suspect it's actually a bunch of different diseases called by the same name. Still, this finding represents one possible clinical test for what has been an un-testable illness.
Alpha-tryptase is a funny thing. About 30 percent of people don't make it at all, and they seem just fine without it, which means that a potential treatment pathway for the EDS-HT/MCAS/POTS hat trick could involve simply shutting down the alpha-tryptase factory."
http://mentalfloss.com/article/87506/one-gene-mutation-links-three-mysterious-debilitating-diseases
OK that is it for me for now.