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DiscussionWhat testing should I look forward to be properly tested for MCAS
Autoimmune Diseases | Last Active: Sep 3, 2023 | Replies (45)Comment receiving replies
Replies to "Thanks so much for lengthy comment! I am genetically inclined to be DAO deficient per DNA..."
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!
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 have “fatty liver” too 🫢. I thought it was hereditary. Is choline a vitamin?