What testing should I look forward to be properly tested for MCAS
I’m still here by the grace and mercy of my God 🙏🏻 I’m trying to understand and to target possible commodity with my current diagnosis (POTS and HSD). I have this symptoms related to MCAS but I haven’t been able to get properly tested. What was your experience getting tested and diagnosed? What specialist test this?
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Good question, @lidiana. I'm tagging fellow members who have experience with diagnostic testing for Mast Cell Activation Syndrome (MCAS) like @rhawk314 @hsminc @frenchie333 @juy77 @kurtg @sommerreign @bluecow @teedlum to join this conversation and share the diagnostic testing they had.
Here are further related discussions:
– Mast Cell Activation Syndrome: What treatments help you? https://connect.mayoclinic.org/discussion/mast-cell-activation-syndrome/
– Mast Cell Activation: https://connect.mayoclinic.org/discussion/mast-cell-activation/
What diagnostic testing have you had, Lidiana?
I think one blood test but I forgot the name. I’m trying to see a rheumatologist but I’m also not sure if he’s the one specialized on this or is it other type of doctor. I’m getting a full panel blood and pricking allergy tests soon 😅 that my local doctor ordered, maybe that could be complementary. I’m honestly ok with biopsies to this point cuz I’m feeling 😓 horrible and I prefer MCAS over having NET or any other malignancy.
I was confirmed as Case #138 ever diagnosed in America with Mastocytosis. The doctors at Vandy performed biopsies (a colorless mole on my collar bone proved to be a "solid nest of mast cells" and a rash on my right thigh proved to be mast cells that had degranulated or ruptured). Those biopsies indicated I was born with 1,000 times the normal number of mast cells in my skin. I went to Vandy thinking I had mononucleosis (fever, swollen lymph nodes). I thought, hey, while I'm here, I'll show them that "mole" and rash. At that time (and for decades) my symptoms were cutaneous. However, I realize now that I also can attribute many of my respiratory problems to masto–pneumonia, walking pneumonia, double pneumonia, bronchitis, sinus reaction to allergens, swollen lymph nodes. Very sickly child! Almost died of pneumonia as an infant. Absent from school so often I had to learn to count to 100 in one day of kindergarten. My "trigger?" Tobacco smoke and both my parents smoked! Oh, they both had urticaria…
Fast forward to the Wu Flu. After the Pfizer double jab, I suffered eighteen months of chronic diarrhea. Up to nine episodes per day. Doubled my H1 Blocker, doubled my H2 Blocker, added a double dose of another H2 Blocker, took myself to the ER for IV infusion of that newer H2 Blocker. NONE of it helped. Why was I savvy enough to connect my GI distress to masto? Because once, one time only, I missed my dose of Claritin and clear, odorless fluid came gushing out of me later in the day. I am famous for being the most regular person on the planet–even when traveling internationally, I get back "on schedule" in 24 hours at the most. Never a previous problem with either diarrhea or constipation. Missed one Claritin and 12 hours later I had to dash!
With the Pfizer vax, I must also speculate that I was reacting to the polyethylene glycol that is an ingredient in those vaccines. I'd had a short-term reaction to thimerosal a decade or more before but nothing but acute nerve inflammation from a previous nerve injury. That polyethylene glycol? Worth researching…
By the way, an international compilation of data determined "a worldwide spike in food hypersensitivity" after the Covid vaccines. Yes, I think we can translate the words "food hypersensitivity" as "food allergy."
Researched, researched, researched! Learned more about MCAS on Inspire.com. Using the SIGHI chart and other online resources, I put myself on a very restricted low histamine diet. Helped but not the magic bullet. I was desperate, having dropped down to an alarming 115 pounds. Based on my body build (skeletal structure and musculature) that 115 would be like someone my height (5' 5") getting down to 105 pounds!
Researched, researched, researched. One, just one fellow sufferer on Inspire.com had a genius of an Allergist who recommended DAO Enzyme. Not a histamine blocker, DAO Enzyme is a histamine digester. It's supposed to take up to 60 days of regular use to have a positive impact since it can take some time to build up in the GI tract. Me? I was so empty that the DAO Enzyme took up residence and started to work within 24 hours. DRAMATIC improvement in 72 hours. Totally back to normal for over three months now while eating absolutely anything and everything I want, including high histamine foods. My weight? Last time I stepped on the scale, I was at 123. May be up to 125 by now. Not obsessed any longer! Granted, I'm still taking DAO Enzyme, two capsules, with every meal.
So? Point being I am self-diagnosed with MCAS-GI/D. That diagnosis was confirmed by my positive results with DAO Enzyme.
By the way, in the middle of my debilitating journey, I lost so many vitamins, minerals and essential electrolytes that I now have Atrial Fibrillation and the attendant blood clots. Loss of minerals for 18 months was so severe that I now have a broken metatarsal in my left foot despite no acute injury. Since I'm back to normal, I am hoping my regimen of calcium, magnesium, boron, Vitamin D3 and Vitamin K2 will aid in that break healing by Thanksgiving, Christmas at the latest. That A-Fib? Same thing. Hoping a proper mineral balance will aid my heart in calming down. Those blood clots? Currently under control (no longer noticeable) with one baby aspirin every night.
Also, in the middle of my journey, I consulted with an Oncological Hematologist to get tested for Systemic Mastocytosis. Negative! Cause for alarm would be a serum tryptase reading of 20.0 or above. Mine? Only 2.0. Granted, I wasn't in an active "flare" at the time since I had to fast for 36 hours before the appointment just so I could leave the house. So, the results may not be truly revealing. I will say I donated blood recently (yes, I'm feeling that good despite the broken bone). My leukocytes and iron content were just fine.
Oh, ceased taking any H2 Blockers (no longer necessary, maybe never necessary) since they contribute to neurological disorders by inhibiting our body's ability to utilize choline. Choline deficiency is a proven factor in future dementia/Alzheimer's. Could the use of all those OTC antacids (many of which are H2 Blockers) be the reason these neurological conditions have spiked in our country? Something to ponder. By the way, received my Advanced Food Intolerance Labs test results a couple months ago. Sure enough, I was deficient in choline. Now, as mentioned, I'm on zero H2 Blockers and supplementing with choline every day. Can I reverse my mental decline? I don't know but I'll do what I can!
I apologize for my typical verbosity but I pray one nugget of info will be of benefit to one person. If so, may you be blessed with success, health and wealth!
Your skin issues look just like mine, and mine are likely MCAS. My skin got better taking Singulair, but everyone is different. For testing, I think a good test is 24-hour urine test, which has to be kept constantly cold even in transport–that's the caveat, but Mayo does this test. It also has to be done on a "bad day." MCAS is super common with hEDS and POTS (trifecta).
I have not had a biopsy yet, but they should have done it with my endoscopy. Chemicals from mast cells, even histamine, have super short life so blood tests are usually "normal." I am still in-process so don't know what else to suggest. If you respond well to Ketotifen (a compounded antihistamine med) that is a sure sign you have MCAS, but I couldn't tolerate it. For some Ketotifen is a miracle 🙂
I don't think Mayo treats MCAS, only mastocytosis, which is where you have elevated tryptase, which MCAS patients do NOT–but it's what allergists always want to test for and will be negative 90% of the time.
I've never taken/been Rxed Ketotifen but here's an ironic twist. I had a severe adverse reaction to Singulair. Two days, yes, just two days on Montelukast and I suffered dramatic vertigo for the first time in my life. Almost fell down a flight of stairs at home as I started to black out from my head spinning. Called my Allergist's office and someon on her staff said, "No, vertigo is not a side effect." Well… I'm super in touch with my body, have had exactly zero imagined events, no psychosomatic predilections, the opposite of a hypochondriac, reality based. I felt what I felt. I experienced what I experienced. I did a super basic search on the Internet and learned that one of the side effects of Montelukast is…
VERTIGO! Different from standard dizziness. So, nyah, nyah, nyah, nyah, nyah! As usual, the patient knows more than the medical "professionals."
Trust your body! Listen to your body. You are you!
@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.
Thanks for sharing. I have tried to get a biopsy but with no success. I’m going to test for allergies on skin and blood. But is this how or do we need a biopsy to confirm definitively? I just don’t want to have a massive reaction when the biopsy could have avoided something going very wrong. I guess they can always use the 🖊️ pen or send me to the hospital 🏥 😅
Thank you so much for sharing! I hope you get your thorough investigation soon. I think this is the blood test they did on me. Interesting 90% is a lot. Is Cromolyn and Ketotifen similar? are this kinda like Benadryl?. I have so much inflammation on my nasal cavity my locals say it’s just allergies and gave me fluticasone. So maybe it would be a good idea for the biopsy in my case. I can’t enjoy BBQ anymore 😓 without itching sore and trembling throat like bolus.
I totally get it. My most common symptom when my mast cells are angry is tremulousness, also lot of gut and bladder issues, besides asthma and allergies. When I tried Allegra and then Claritin, I had a lot more trembling, so back to Zyrtec as my body was "used to it." When I had Covid vaccine, I had dizziness for 2-3 weeks. Doctors still don't know all of MCAS symptoms, and they seem to change over time and everyone is different! The Singulair might be aggravating my gut as I've had lot more cramping. Everyone has to pay attention to their own body, ignore nay-say doctors. LOL I'm positive your vertigo was a mast cell reaction.
Thanks so much for lengthy comment! I am genetically inclined to be DAO deficient per DNA tests, but I tried a good brand of DAO and had horrible diarrhea next day. What brand do you buy? My blood lab tested high for histamine–yeah I'm 5'5" and only 106 pounds! I eat low histamine diet, but still feel horrible most the time.
Thanks for info on H2, I've been taking but getting worse, so I'll try and stop pepcid. I stopped having heartburn when I went gluten-free anyway. Scans even said "fatty liver," a sign of choline deficiency. Can choline be tested in blood labs? Do you take choline supplement?
I have tachycardia and tremulousness with lot of brain fog, also muscle spasticity on top of "normal" allergy sx–I research a lot like you, but so many doctors are dismissive. My local internist will usually prescribe any tests I want so…I'll ask.