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

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.

I have “fatty liver” too 🫢. I thought it was hereditary. Is choline a vitamin?

This information is all fabulous! It also feels good to see and hear all the sharp intellects fighting for health and all I can think is, I wished I’d been plugged into these discussions since the MCAS bomb went off in my body, but grateful anyway!. I wanted to say that I used Dr Becky Campbell’s “Optimal Reset” supplements , and still do esp w a flare, I am right back on them. The unusual thing I did was to follow my blood type diet and go on an extreme version of it. Nothing else was working. For O , that extreme version was the Carnivore Diet which is Beef, Butter,Bacon, Eggs. Just that.! I studied many sources on YouTube and tried it. Got my Instant Pot and got right into it. I began to reverse to health in 24 hours after months in bed. I kept it up for a month until I was quickly and actively healing. I have slowly introduced my vegetables , but only broccoli and lettuce are tolerated but back to chicken turkey and less beef. But I’ll tell you whenever I have a flare, I go right back on it an the flare dies right back down after a few days. Becky Campbell and Beth O’Hara have taught me many things but honestly this BBBE protocol of my own has saved me and given me back a life I can do!!

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.

Cromolyn comes in liquid vials that you take with meals and helps gut symptoms from MCAS--but I got nauseous. Ketotifen is an H1 antihistamine and you have to use a compounding pharmacy which puts powdered drug in capsules--neither med is cheap!

I think NasalCort contains cromolyn and Alaway eyedrops contains Ketotifen. Don't know if this form of the drug helps.

Hello, bluecow! I started out with Code Age Beef Kidney. Finished the bottle and switched to One Earth Beef Kidney. Why the change? I'm the human guinea pig. I felt an increased improvement with One Earth but that may have been due to the months of DAO building up in my system with the initial use of Code Age. Yes, I'm a fanatic about being objective. Since I've been back to normal for months, I've now opted for the most affordable. Hold on while I grab the bottle. Brand name at the top of the label in a gentle arch is Herbage Farmstead. Gold cap. Dark bottle. Pale grey label with the words "GRASSFED KIDNEY" prominently displayed. Potency is identical to the previous two bands: 3000 mg. Now, that 3000 mg is divided among 6 capsules. Yes, I do still take 6 capsules per day (2 with each meal).

Now, your previous reaction. I'm no doctor so take what I say "with a grain of salt." I have heard of many MCAS sufferers who experience a delayed reaction (up to 48 hours later). So maybe, just maybe, you were reacting to something else.

Me? With some items, I have an undeniable immediate reaction. Case in point? A certain brand of toothpaste and a "healthy" mouthwash. Those products, in less than two minutes of exposure against the sides of my mouth, under my tongue) caused "gurgly gut." This happened three nights in a row during my bedtime regimen. I do not discount what others share. Each of us is unique. Perhaps, due to my ridiculously high number of mast cells, I tend to have more immediate reactions.

Oh, I've been using this cheapest DAO/Beef Kidney supplement for over a week with zero setbacks. Love to save money but I'd pay $100/month if that's what was required to stay on this supplement.

Another form is DAO derived from desiccated pork kidney. I'm not Jewish but I do adhere to a Biblical diet in terms of no pork or other scavengers and keeping all dairy two hours before or after any meat. No, I don't claim to be perfectly "kosher" but being a health nut and researching various aspects of digestion, it certainly makes sense to me. Back on topic: I just want you to know you have options and they may not bother to state DAO Enzyme. Desiccated Pork Kidney? Beef Kidney? It's up to you.

I will not be offended if you opt out. For all we know, you may have reacted to the capsule itself. I think they're usually made of gelatin.

Moving on to choline. Don't know about blood labs. I did send in a hair sample to Advanced Food Intolerance Labs and got a comprehensive report (about 20 pages, I believe). That report listed foods, beverages, vitamins, minerals, yeast (such as candida albicans and the like). The graphics communicated well. For foods and beverages, certain colors indicated good, neutral or probable allergy/sensitivity. For vitamins, minerals, amino acids and the like, certain colors indicated sufficient, slightly deficient or deficient.

Yes, oh YES! I do take a choline supplement now. My husband and I have opted to send in hair samples twice a year (around my birthday and again in mid-February). I'm delighted to consider AFIL hair testing a wonderful birthday and Valentine's Day gift! My most recent results showed I'd taken care of my Co-Q 10 deficiency and a few other items. I'd never taken Co-Q 10 before but now take a double dose (a total of 400 mg per day though 200 per day is considered adequate). Based on upcoming mid-February results, I may drop back to 200 mg. I do make sure to take a bioavailable form (ubiquinol). That's just one example of the benefits I've derived from those hair tests. Oh, I've conquered candida. Didn't even know I had it. Zero symptoms but evident in a high enough amount to be detectable in that hair sample. I cut waaaay back on sugar and simple carbs. My most recent test? Zero candida. Hope I get the same good news about choline!

I'm self-diagnosed with the A-fib. Don't know what type of arrhythmia I have since I don't have a doctor. But, hey, I can feel it. It is getting better.

You are blessed to have a cooperative internist. I am on the verge of consulting with a new Dermatologist for a variety of reasons. Need to have some moles frozen off. Need to get a Rx for Sporanox for stubborn toenail fungus. (Yuck!) But I'd love to conquer that problem. Plus, Sporanox is anti-cancer! A bonus. To the best of my knowledge, I'm cancer free but happy to get that added benefit.

As to dismissive doctors, I've had other "problems." Pervs, jerks, idiots, liars, incompetents. Ohhhhhh, the stories I'd could tell and they'd all be true. FACTUALLY true. Learned earlier this year (at a Sherwin-Williams Paint Store) that my former GYN was inappropriate with her, too. So, that's a total of three ladies that I know of who had problems with that jerk. When he was still in practice (retired now), I warned everybody away from him--friends, family, coworkers, strangers. If doctors knew... We talk! Yes, we DO talk. I owe it to everyone to warn them away from incompetent or skewed MDs.

So glad your heartburn is resolved. My husband suffers from acid reflux and has been on another terrible drug. Rx Pantoprazole is a Proton Pump Inhibitor. We are weaning him off of it verrrrrry slowly and carefully, with his MD's full knowledge and support. With PPIs, some people suffer acid rebound if they stop or reduce too dramatically. H2 Blockers? I had no need for them as an acid reducer and, thankfully, had no change when I stopped all of them abruptly. Yep, during my most desperate days, I was taking 2 Tagamet a day and 2 Famotidine a day along with my H1 Blocker (2 Claritin a day). Then I stopped the Famotidine and got back to just 1 Tagamet a day (my usual dose for decades). From Day One, it bothered me that my stomach acid was reduced. I wanted to enjoy the full benefits of normal digestion of all my food and supplements. I had the Tagamet added to my regimen when my first Oncological Hematologist prescribed it, hoping it would help with my ferocious itching. It did but... I'm no longer exposed to chemicals at home or in the workplace (used to be in automotive mfg.). I've swapped my personal hygiene products (shampoo, conditioner, body wash, toothpaste, mouthwash). So, months ago I said "good-bye" to Tagamet/Cimetidine. Now I'm back to one Claritin per day. Period.

Well, I've gone on at length again but I didn't want to neglect to reply to each of your concerns. I don't have much but I offer what I can.

Oh! Let me offer this. I learned of AFIL via a Groupon email. So, the price was reasonable. They offer different levels of testing now but the one we opted for was impressive and comprehensive (for our concerns). It's a great place to start! A blood test? Probably even better!

Imagine me giving you a hug, bluecow!

You asked for information about testing…this guide helped me…I printed, read it, Filled out forms and shared it with my doctors…
Doctors who helped me : really any doctor who is familiar and willing to learn, and genuinely interested…In my case, a rheumatologist/immunologist who was so intrigued and spent tons of time devoted to helping me ( he retired last year) and my primary care doctor who is very knowledgeable about supplements. My 1st Allergist did skin testing and gave up…Allergist #2 started me on h1 and h2 antihistamines and on follow up appointment said he didn’t feel comfortable treating me…Allergist #3 is knowledgeable and willing to learn more…so I am making progress…dermatologist was clueless about MCAS and not interested in learning…

In my experience, testing is only useful if the doctors has a full understanding of what test to order and how biopsies need to be tested…AND the lab handles the sample correctly. 24 hr urine was negative the first time I tested but sample was mishandled ( by me and lab due to poor instruction)…and then positive when I worked with another lab and was given clear instructions…

Here is the link to the MCAS guide. Any doctor can follow this not just GI doctor.
https://www.ehlers-danlos.com/wp-content/uploads/MCAS-Primer-for-the-Gastroenterologist.pdf

And last I heard! Mayo Clinic refuses to treat MCAS. Someone correct me if I am wrong…

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! 🙏💕

@moylandavis thank you so much! 🙏🏻 I really really appreciate this 🌼 blessings for healing always ❤️‍🩹

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!!!