What testing should I look forward to be properly tested for MCAS

Thank you! I like your verbosity! I’m the same way!
But, I’m so impressed you’ve become so knowledgeable! I did the same thing with breast implant illness and mold toxicity! I did so much research and finally had them taken out, but I was so sick, I got pseudomonas aeriginosa from the operation.
I can’t tell you what a horrible journey I’ve been on in te pay 20 years, but now, my ex-husband has high levels of mold in his house, and my 36 year-old son has been living here for over 2 years. My ex is here ever night and weekends, and he’s ruined my love and social life! He doesn’t care!
This is going to kill me!
I wish you the very best! 🙏💕

Apparently Choline is an essential nutrient that impacts liver function, healthy brain development, muscle movement, your nervous system and metabolism. From what I read online, choline deficiency is rare and more likely to affect post-menopausal women, which is exactly when I got so much sicker 13 years ago! "Choline deficiency is associated with liver and/or muscle damage," and I've had a lot of spasticity and weakness in my muscles and tendons that no one can figure out.

Anyone out there know if taking choline supplement is good idea, and what brand and dose?
Thanks.

@frenchie333 Thanks for sharing! I can’t even count how many times I’ve had a reaction to medication, I tell the doctor and they say that’s not a possible reaction. Then I find out online it is. My head is spinning from what is happening in health care.

Katrincha, I'm impressed by YOU! So few ladies are informed about the possible dangers of those implants! Just my opinion but I think you did the right thing.

Mold toxicity? Have to mention a specific health show I DVR every M - F. It's 30 minutes and, with a recording, I can jump through the promos and watch each episode in about 20 minutes. A small investment of time to gain info. The show? "Know the Cause with Doug Kaufmann." It airs on Christian Television Network (CTN) at 10:30 a.m. EST. Doug Kaufmann also has a live, interactive site on Facebook. He focuses on mold, fungus, yeast, mildew and the impact they have on our health. He and his sponsors also offer natural remedies for a variety of health concerns (not all mold, mildew, intestinal/vaginal yeast). Doug has been a trailblazer in this area since many MDs are uneducated beyond bacterial and viral infections.

Truly in anguish, concerned about the disruption of your home life. What in the world??!?!? I don't know the details, can't begin to comprehend why your ex...

All I can do is offer encouragement to stay strong and when/if it is possible, TAKE. A. STAND! I know... I know... Easier said than done. To this degree I can relate. In what I call my Chicago years (actually Oak Park), I grew up with an alcoholic, wife beating, child molesting stepfather. A voyeur and an exhibitionist who couldn't get enough porn. What The Creep did to me was nothing compared to what my mother, little brother and our beloved family pet suffered. Yes, with malicious glee The Creep bragged about murdering our "fur baby." Evil! I grew up with evil. When my mother found out what he'd done to me she took no action for 18 months. This is where I concede that taking a stand is easier said than done. I understand now that my mother was too proud to ask for help, to seek financial assistance from her relatives. But, one day she announced to me and my little brother, "Well, kids, today I kicked out 2/3 of the family income!"

Then I had my own problems. The Creep was gone but my mother (manic depressive/bipolar/suicidal) had failed to provide any stability, wholesome love. Due to a dysfunctional family life, I got married the first time before graduating from high school (technically finished high school in three years rather than four). Yep, married a few months before my 18th birthday to escape that perverse family life. My first husband? Over the years, he became an alcoholic. He hit me once. And, like my mother, it took me over a year to kick him out. Kicked him out two days before our 9th wedding anniversary. Point being, I don't judge you. Only you know the details of your circumstances. We may be strangers; but, I want what's best for you.

Back to my being knowledgeable, I got diagnosed so long ago that there was little to nothing the MDs at Vandy could offer. Just two tidbits of info re: a patient who reacted to FD&C Red #2 and another who reacted to natural sunlight! So, I was on my own. Had to discover my "trigger" and adjust my life accordingly.

It's only years later, after I'd moved from Nashville to Lexington, that a Dermatologist put me on Claritin waaaaaay back when it was available via Rx only. Why did I seek a Derm? My hives would morph into cystic acne despite my being the only person in my family that had not suffered with "crippling" acne in my younger years. They my mother and four siblings were socially "crippled," hiding in the house with brown ointment dabbed on their faces, scarred with acne pits. Then I started to get those blemishes in my mid 20s!!! What?!? Tobacco smoke was my "trigger."

Jump forward to the Internet. I could research! Also, I did medical transcription for a time and bought myself a personal Merck's Manual. Learned about the connection between masto and leukemia. Sure enough, as an auto worker, my annual physical indicated elevated leukocytes, something I'd had as a child, something that had delayed my tonsillectomy and adenoidectomy at the age of seven. My Derm referred me to an Oncological Hematologist and Tagamet was added to my regimen. Oh that Oncologist? He'd never heard of masto. Being an honorable, man he admitted that he'd had to research my disease before my appointment!

But the beginning of my journey as a health nut began at the age of 15 when a friend's older brother (a hippie) steered me to natural mood elevators. I'd revealed my severe depression to him (yes, I was becoming suicidal living under the same roof with The Creep and a mother who took no action). On his advice, I started B-Complex, extra B-12, Vitamin D3 and cod liver oil. My circumstances hadn't changed one bit but I was better able to cope.

So, for over 50 years, I've continued to glean info about natural remedies. My motto? God's Pharmacy First. For any atheists out there, my other motto is: Mother Nature Provides.

I take natural antihistamines like Quercetin, Luteolin and more. Along with the DAO Enzyme to digest histamines, I take a Super Daily Enzyme capsule from Vitacost.com. That one-two punch of digestive enzymes has granted me total success. Back to eating daily yogurt, half a grapefruit, chocolate, spicy foods and more. Can't think of a thing that's off my list though I do feel an urge to sneeze when I make my husband's organic whey protein shake with organic Ceylon cinnamon and more. But who wouldn't feel a sneeze coming on if they inhaled a fine powder of anything? Not a coward but I've yet to add cinnamon to my daily regimen. Have no need since my blood sugar is just fine. Fasting blood sugar in the mid 70s.

Oh, before I release you, I must laud two other health shows that I DVR, also on CTN. One is "Dr. Ward Bond." His whiteboard presentations are informative. The third show that I DVR every M - F is "Your Health with Dr. Richard Becker." It's an hour long but, again, I can jump through the promos.

Finally, I subscribe to a magazine that may strike others as fluff but usually contains some useful health info. "Woman's World" provides a weekly crossword and sudoku, features on beauty and fashion, recipes and weight loss regimens and... articles on nutrition/health.

Perhaps something above will be of interest, useful to you.

My prayers are with you! I will never forget a former boss (Cindi Walton at The Jockey Club--God rest her loving, humble soul). She ended every email with this tag line:

"Be kinder than necessary for everyone is carrying some kind of burden."

And I will share two things I learned when my husband suffered a heart attack, stroke, went Code Blue SEVEN times that night, two-and-a-half weeks in a coma, two-and-a-half months in a hospital bed, two-and-half months of physical, speech and occupational therapy.

1. The LORD Himself helps me carry every cross.

2. Prayer has power.

Again, my prayers are with you, Katrincha!

Have anyone had pharmagenetic testing?

It’s being researched for genetic disposition to adverse or overall individual reaction to certain medications/drugs/pharmaceutical drugs. But I don’t know if this would help MCAS patients.

Wow! Where the heck did you pick up your writing skills? I’m a former high school English teacher, and I know good writing!
I’m impressed again!
I have to make this kind of short because I have to order food from Whole Foods, and I’ve been researching low histamine and low oxalate diets. It’s hard to cook nutritious foods for my son when the ex brings over crap that is gluten-free. Ugh!
He has his own opinions as to how to get our son better and yells or talks loud the entire time he’s here every night. He walks hard and eats like a chipmunk. It makes me sick!
Long story why he’s here, but it’s because my son wants to see him. I still can’t figure out this whole thing, and I’ve told him he’s ruined my life, but he ignores me and keeps doing what he wants. I stay in my bedroom when he’s here. He can’t make a decision, so his house is just now starting to be redone. He is getting new windows, but in the meantime, the carpets need to be removed, all the clothes need to be washed in Borax, etc, so why doesn’t he do that while he’s waiting for windows? I can’t answer that.
I have taken stands, and he totally ignores them! One time, he fell shoveling snow and had to have rotator cuff surgery. I took him since he has no one else, and he ended up staying here for 5 months. It’s so weird! Also, my son and he are, unfortunately, extremely co-dependent and my son can’t go one hour without calling him at work. I wish he had bought the house down the street, but he thinks his house is salvageable. I do not.
We come from similar backgrounds, except my dad was the alcoholic snd I was the scapegoat. My mom finally developed her career Kate in life and put me through school. She worked so hard, and I’m afraid I’m the only one if my sisters who inherited her work ethic and non-judging nature. My sisters and I have not gotten along since our mom died 17 years ago. I became the scapegoat and I’m not sure why. It’s so hurtful, but I pray and meditate several times a day to stay sane!
Anyway, I love Doug Kaufmann, and I’ve been on his phase one diet since I found out about breast implant illness and the connection to mold; probably about 6 years ago. I had gone gluten and dairy free, already, but I never knew about mold or that it was so toxic. It was so unfortunate that my condo had mold, because my sister, who is a multi, multi, millionaire by marriage, had fixed it up before I moved in. It was gorgeous!
When I walked in, I remember saying, “I could die here!” No truer words were spoken.
She hasn’t been to my house since I had to move, which has been about 3 1/2 years ago.
Anyway, I saw Doug’s assistant, Dawn Strohm, as my naturopath when I found d out about BII. Then I started taking supplements that Doug recommended too and felt better. It was enough to get me to pack and move by myself.
So, Quercin is an antihistamine?
Andrew, my son, is taking a prescription antihistamine. This mold has gotten into his sinuses and stomach and then Covid hit a year ago and he’s been almost bedridden since then.
I keep seeing something new when I look for things to help him… RESEARCH! Lol!
Now I have Lyme co-infections, and deal with chronic pain from a spine deformity and Scarlet Fever as a baby, severe leg aches, which have returned in the last 4 years (excruciating!), strep constantly as a child for over 20 years, always fatigued, and no one paid much attention. I think my mom was busy holding the house together.
Now, I may have lost my fiancé because he won’t come over because of my ex, and I have a broken arm.
I have no idea what I said before.
What site am I on, again? Mayo?
I sound like my IQ is about 50!
I just kept following the links until I saw this, and I had to respond to your post!
I hope we can talk again!
You are the kind of person I’d like to have for a friend. No one else understands!
Is Lexington in KY?
My best friend lives in BA outside if DC. I was supposed to go visit her at Thanksgiving, but I broke my arm and had no one to watch my dog nor my son.
Oh! My ex gets 15% of my pension, claims my son as a dependent, and now that my son got disability, he has to take money out for rent.
You’d think he’d put it in an account for when we die! I could go on about him, but I’ll spare you the details.
I’m the nice one! Lol!!
Have a good evening!
Im going to check out the other programs you mentioned. I basically watch You Tube because I can’t get near the TV at night and mine is set to my son’s settings.
He can hardly function mentally or physically anymore. 🙏💕💫
Have you ever heard of Michael Sandler? Suzanne Geisemanne, a channeler? Check them out. They make me happy!

Moylandavis, you are right. Remarkably, my husband's best friend got diagnosed with mastocytosis and, in his private plane, used to fly up to the Mayo Clinic for consults and... Now? He is seeing a receptive Dermatologist in Lexington, Kentucky (an hour's drive from his home). He also has an Oncological Hematologist in Kentucky. Last I heard, his serum tryptase was in the 30s. Cause for concern. It's my understanding that a reading of 20.0 or above may indicate the need for watchfulness and possible bone marrow biopsy.

Have no idea why Mayo Clinic bowed out.

Have yet to click on the link you provided but looks like something we ALL need to read. We must commit to self-education! Many thanks for sharing that resource.

Final comment/question. I keep seeing references to ehlers-danlos but am not clear on what it is or if I've understood correctly, am misremembering. Is it related to extreme flexibility of joints? Forgive me if I seem lazy, if I fail to educate myself (again). If I am remembering correctly, I am famous for my extreme flexibility (and I'm going on 70!!!!).

Again, grateful for that link. Will click on it. right. now!!!

Wow! Where the heck did you pick up your writing skills? I’m a former high school English teacher, and I know good writing!
I’m impressed again!
I have to make this kind of short because I have to order food from Whole Foods, and I’ve been researching low histamine and low oxalate diets. It’s hard to cook nutritious foods for my son when the ex brings over crap that is gluten-free. Ugh!
He has his own opinions as to how to get our son better and yells or talks loud the entire time he’s here every night. He walks hard and eats like a chipmunk. It makes me sick!
Long story why he’s here, but it’s because my son wants to see him. I still can’t figure out this whole thing, and I’ve told him he’s ruined my life, but he ignores me and keeps doing what he wants. I stay in my bedroom when he’s here. He can’t make a decision, so his house is just now starting to be redone. He is getting new windows, but in the meantime, the carpets need to be removed, all the clothes need to be washed in Borax, etc, so why doesn’t he do that while he’s waiting for windows? I can’t answer that.
I have taken stands, and he totally ignores them! One time, he fell shoveling snow and had to have rotator cuff surgery. I took him since he has no one else, and he ended up staying here for 5 months. It’s so weird! Also, my son and he are, unfortunately, extremely co-dependent and my son can’t go one hour without calling him at work. I wish he had bought the house down the street, but he thinks his house is salvageable. I do not.
We come from similar backgrounds, except my dad was the alcoholic snd I was the scapegoat. My mom finally developed her career Kate in life and put me through school. She worked so hard, and I’m afraid I’m the only one if my sisters who inherited her work ethic and non-judging nature. My sisters and I have not gotten along since our mom died 17 years ago. I became the scapegoat and I’m not sure why. It’s so hurtful, but I pray and meditate several times a day to stay sane!
Anyway, I love Doug Kaufmann, and I’ve been on his phase one diet since I found out about breast implant illness and the connection to mold; probably about 6 years ago. I had gone gluten and dairy free, already, but I never knew about mold or that it was so toxic. It was so unfortunate that my condo had mold, because my sister, who is a multi, multi, millionaire by marriage, had fixed it up before I moved in. It was gorgeous!
When I walked in, I remember saying, “I could die here!” No truer words were spoken.
She hasn’t been to my house since I had to move, which has been about 3 1/2 years ago.
Anyway, I saw Doug’s assistant, Dawn Strohm, as my naturopath when I found d out about BII. Then I started taking supplements that Doug recommended too and felt better. It was enough to get me to pack and move by myself.
So, Quercin is an antihistamine?
Andrew, my son, is taking a prescription antihistamine. This mold has gotten into his sinuses and stomach and then Covid hit a year ago and he’s been almost bedridden since then.
I keep seeing something new when I look for things to help him… RESEARCH! Lol!
Now I have Lyme co-infections, and deal with chronic pain from a spine deformity and Scarlet Fever as a baby, severe leg aches, which have returned in the last 4 years (excruciating!), strep constantly as a child for over 20 years, always fatigued, and no one paid much attention. I think my mom was busy holding the house together.
Now, I may have lost my fiancé because he won’t come over because of my ex, and I have a broken arm.
I have no idea what I said before.
What site am I on, again? Mayo?
I sound like my IQ is about 50!
I just kept following the links until I saw this, and I had to respond to your post!
I hope we can talk again!
You are the kind of person I’d like to have for a friend. No one else understands!
Is Lexington in KY?
My best friend lives in BA outside if DC. I was supposed to go visit her at Thanksgiving, but I broke my arm and had no one to watch my dog nor my son.
Oh! My ex gets 15% of my pension, claims my son as a dependent, and now that my son got disability, he has to take money out for rent.
You’d think he’d put it in an account for when we die! I could go on about him, but I’ll spare you the details.
I’m the nice one! Lol!!
Have a good evening!
Im going to check out the other programs you mentioned. I basically watch You Tube because I can’t get near the TV at night and mine is set to my son’s settings.
He can hardly function mentally or physically anymore. 🙏💕💫
Have you ever heard of Michael Sandler? Suzanne Geisemanne, a channeler? Check them out. They make me happy!

Natural Antihistamines

Very recently learned of other natural antihistamines. Have yet to research all of them. Some are part of my daily regimen for other reasons, my being ignorant of their antihistamine benefits. Here's the list with brief comments:

Forskolin (have to research)
Quercetin (been taking for years in a blend with Bromelain)
Astragalus (been taking for years for immune strength, didn't know it's antihistamine effect)
Vitamin C (no need to comment except that too much can cause "loose stools")
B. Longum (I assume this is a probiotic that's no to low histamine)
B. Infantis (I assume this is another no to low histamine probiotic)
Erythropoietin (Huh? Never heard of this one. Have to research.)
Theobromine (related to tea? I no longer use organic green/matcha tea in my morning shakes but do take EGCG daily)
Guarana (I know of its energy boost–unbound caffeine that can be gently metabolized)

Oh, I do take Stinging Nettle. Will check into Holy Basil and Chinese Skullcap, too.

Finally, just learned in the past hour via a newsletter by Anita (Beth is another mastocytosis expert) that Vitamin B6 is needed so our bodies can make DAO Enzyme!!!!! So, I just had a recent question of mine answered. Yes, our own bodies can manufacture DAO Enzyme, a histamine digester, but only if we have adequate Vitamin B6.

I assume, like all B vitamins, B6 will be most effective if all B vitamins are in our system. So, taking a B-Complex with additional B6 would probably be the way to go.

Yes, EDS is a joint disorder and commonly is a comorbidity with MCAS, as it HATs and POTs.

Dr Afrin, who was the lead on this guide, wanted to provide the guide for free and did so on the EDS website...through the medical journals, you need a paid subscription. He addresses it to Gastroenterologists but really any Doctor who is curious can benefit from reading.

Mayo and so many other medical institutions and medical practices have decided to not seek MCAS patients or allow them to be referred in. We just take up too much time and the Insurance companies will not compensate them for their time. We are just too complex. And testing is just too difficult. I have taken me 4 years to get a positive hit on a lab test...I also have elevated Mast Cells in my GI tract...Even with the elevated Mast Cells, the Lab refused to run further test that would give more clues to what type of Mast Cells and their features. I'm sure it is an insurance thing! So many practitioners are hung up on Tryptase.