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

Next time I stumble upon one of her newsletters I'll come back and give details. There are two ladies who are real experts on mastocytosis. Both of their newsletters are respected. Yes, they offer recipes, attempt to sell items but also offer useful info. One newsletter is Anita's (as mentioned). The other is Beth's. Yes, they're both so well known at Inspire.com (the various masto forums) that all that is needed to communicate to fellow sufferers is their first names. Let me go through my emails right now. My "in box" is in the 600s. Seriously! Can't keep up! But I do what I can to keep up on Mayo. BTW, I've been muzzled by Inspire.com because I'm not politically correct. I share uncomfortable FACTS about the vax, inaccurate test results (false positives/false negatives), the dangers of mandated Remdesivir, Fraudci/Falsi, Big Pharma, VAERS/Adverse Events and more. Shame on me! Verboten! Achtung, Baby!

Whooo HOO! Did not delete her latest newsletter that mentioned the role of Vitamin B6 in enabling our body to manufacture its own DAO Enzyme. First, here's Anita's email address:

Anita Tee (anita@factvsfitness.com)

Next? The following is a copy and paste from "Page One" of her latest newsletter. Hope you find it of interest. The copy and paste did not pick up the pretty graphics, just the text. But that's what matters!

Do you know the role of B vitamins in health?

B vitamins are incredibly important. They’re the ones that are part of many of the links in the chain of all reactions that take place throughout the body.

For example, vitamin B12 is part of blood formation while vitamin B9 has a key role in hemoglobin formation and thus the oxygen carrying capacity of your blood.

Not many will know exactly what the other B vitamins do. But it’s quite important that you know more about B6 as it has a critical role to play in histamine intolerance.

You see, when a nutrient is essential to the processes of other compounds such as enzymes, we call them cofactors, and vitamin B6 is exactly that; a cofactor.

For which reactions you may ask? For the creation of diamine oxidase (DAO) - a histamine degrading enzyme.

That’s right. If you don’t have enough B6 in your body, you’re not going to be able to prioritize making DAO.

And, if you’re not making enough DAO, you’re going to suffer the consequences of elevated histamine levels...in other words, histamine symptoms.

Oh, last reply re: masto newsletters. I'll try to get back over here with a copy and paste the next time I get a newsletter from Beth!

More info on choline, Ruthie! Another uncanny moment. These happen to me all the time. I just happened to be watching "Your Health with Dr. Richard Becker." It was a re-run but, for some reason, I chose to watch it again. The subject? Phosphatidylserine. Great for cognition and it works with both Acetyl Choline and Gingko Biloba, making both of those supplements more effective in warding off and even reversing dementia!

Oh, Phosphatidylserine is conditionally essential. It's something our bodies make naturally but production declines with age. So absolutely safe, as is Acetyl Choline.

HAD to share with you.

I've been taking Phosphatidylserine for some time now and, as mentioned before, recently added choline. In the future, I'll be certain to always order the Acetyl Choline.

Another mundane tidbit that I may have failed to share before: Yes, doing puzzles is a good idea but they've tested and it is proven that crossword puzzles are more beneficial than sudoku. I enjoy both but am now committed to crossword puzzles. With sudoku, once you've plugged into your inductive and deductive reasoning, well, you've gained the skill. With crossword puzzles, that's a broader and deeper cache of memories into which you must dip. And, yes, some reasoning is involved as you take a chance by filling in a probable answer which provides a letter or two to successfully fill in another clue.

Brain fog? I don't consider myself as suffering from that but... I will watch or listen to something of interest that ignites a line of thought, resurrects a memory and my mind is on a different track. I'm all there, not mentally numb or dull, not staring into space. Just on an internal mental path. Love to use my "jump back" button on the remote so I can get back to the part of the program where I went on my own path for a while and continue to stay on the track for the remainder of that show. Is that brain fog?

As I told my Sunday School/CCD students, sometimes our minds wander in Church because the Scripture readings make us ponder something in particular. That's okay. But we shouldn't be thinking about silly, selfish, stupid things. Just get back on track.

Oh, Ruthie, how I wish I could meet you and several others face-to-face, to give you and others encouragement. I give what I can at this keyboard. A virtual hug is on its way to you!

I did some digging and found an old newsletter from "Beth"--the other mastocytosis/histamine expert. Here's her email:

bethohara@mastcell360.com

I'm not sure as I've never been diagnosed as I always present as a perfectly healthy person despite my complaints of cognitive, memory, and digestive issues. I did have good luck with this list:
https://en.wikipedia.org/wiki/Mast_cell_stabilizer#:~:text=Mast%20cell%20stabilizers%20are%20medications,of%20IgE%2Dregulated%20calcium%20channels.
I personally take loratadine (claritin), quercetin, and vitamin D daily. Between that and, basic well wellness through a healthy diet, exercise, and sleep, I've managed to keep it under control. When I do react to a food, I'm very quick to identify and remove the offending food for a few months as it rarely becomes a permanent allergy.

Lawrence B. Afrin, MD has a book on Amazon. He has been an vocal advocate for people with MCAS, and I believe MCAS is major component of the Long Covid.

Kurt G, thank you so much for the link and for steering me to the book by Dr. Afrin. I will go to Amazon right NOW!

FWIW (For What It's Worth), you may want to add Bromelain to your regimen since it makes Quercetin more bioavailable. In fact, Vitacost.com sells a capsule that is a combo of Quercetin and Bromelain.

Like you, via natural supplements, I am 100% back to normal for about four months now. Like you, I take one Claritin (10 mg Loratadine) per day. Period.

Now, the sleep? STILL struggling with raging insomnia. But that's another topic. Being a health nut on zero prescriptions, I've added GAGA, L-Tryptophan and 10 mg time release Melatonin to my evening regimen. Recently added Glycine, also. Gave up on the herbals. Used them without fail for months and enjoyed zero benefits.

Staying hopeful...

Lidiana, I believe a biopsy would be very helpful. Your lack of success angers me. The next time you suffer from a rash or hive, all they have to do is take a skin sample. That rash on my thigh? One of the two doctors at Vandy took a gentle scraping and sent the cells to the lab. That was it. DIAGNOSED! And that official diagnosis could open the door to meaningful care.

I've had the back scratch test. Results? Allergic to dust and cat dander. Neither of which would explain the severity of my cutaneious symptoms, fevers and swollen lymph nodes nor the dramatic, life-threatening GI symptoms!

Please keep us posted. I pray you find a medical practitioner who is receptive to your very basic need/request.

@frenchie333 your reply came in just the perfect timing… this just happened an hour ago I just took Benadryl I don’t know what else to do… I honestly don’t know what triggered this… I just ate a lil hibachi fried rice and vitamins (magnesium, D3, B12 and Maltaglobin iron syrup) with water and lil coke. I did felt the food like spicy or burning mouth but I thought it was seasoning or just sensitive mouth syndrome…..I’m getting really frustrated and honestly scared my allergen test shows this on the pictures but have no clue what implications these have.

Thank you so much for sharing your experience and for the good wishes 🙏🏻 blessings of healing and wellness for all always 🌼

O. M. G.!!!!! Did the fried rice have the usual soy sauce and eggs? I could be wrong but I thought soy sauce was high histamine. And, indeed, some spices are high histamine, too. And your chart showed eggs as an allergen.

Many websites will list high versus low histamine foods. You may already know this but, if not, you may want to check out the highly regarded SIGHI list. I've forgotten what that acronym stands for but it's Swiss something-or-other.

Me? I think you know me well enough to discern I'm not smug, not bragging. Soooooo deeply grateful for DAO enzyme, my diet being expanded to include everything and anything without mast cell reactions, gaining back the weight I lost. Yep, all due to DAO Enzyme. When I share with friends, family and strangers I help them remember by pointing upwards and saying Divine Authority Overhead. DAO! For me, a lifesaver! Perhaps literally.

You have got a serious problem. Alarming!

If you seek out DAO enzyme, it might not even be mentioned on the label. It's desiccated beef or pork kidney. There are many brands on Amazon.com. I opted for the Beef Kidney and take two capsules three times per day. I take them with meals but it wouldn't be a bad idea to take those capsules half an hour before each meal.

I am seriously concerned for you! Oh, have yet to check your allergen chart. Will do that next.