Has anyone with mast cell disorders had a low cortisol? Waiting to hear back from my specialist on these results, but wanted to know others experiences…

Sad because it helps with my mood slightly. Been on it 2 weeks and it’s definitely made things worse.

Our preliminary data clearly show that blocking both histamine H1 and histamine H2 receptors may lead to the improvement or even the disappearance of some symptoms in a significant proportion of patients with long-COVID with symptoms attributed to MCA.

Antihistamines improve cardiovascular manifestations and other symptoms of long-COVID attributed to mast cell activation
Salvucci F, Codella R, Coppola A, Zacchei I, Grassi G, Anti ML, Nitisoara N, Luzi L and Gazzaruso C (2023)
Front. Cardiovasc. Med. 10:1202696.
doi: 10.3389/fcvm.2023.1202696

Does anyone who started LDN have worse flares that got better than baseline after a while?

It’s only day 1 but my heart is beating faster and my Erythromelalgia is definitely triggered more already.

I have no doubt more histamine is circulating through my body.

Does any one know if Cromolyn will affect bone marrow biopsy results?

My son's biopsy is Nov. 26th. The GI team wants him to try cromolyn after his steroids failed to improve things.

I just don't want to start it if it can affect results

Anyone out there have any difficulties with swallowing (I.e., choking on food, liquid, saliva; or feeling things being stuck)? Currently going through a medical investigation nightmare related to my swallowing difficulties. I am wondering if it’s possibly connected.

Hi, my doctor sent me for a scope which found increased colonic mast cells - I am already taking LDN and sodium cromoglycate with slight benefit, as well as budesonide (entocort) for the past 6 days. I thought I felt something different in the hours after I took the budesonide but haven’t seen any improvement since then, mainly talking in terms of diarrhea output and drowsiness though I do have other symptoms as well.

From what I have read on my condition the case studies described ‘prompt’ and ‘rapid’ resolution of symptoms for those who responded, thus I think it is now unlikely that this medication will work for me. Although, I do not know exactly what length of time these adjectives allude to.

How long would it take budesonide to work for mast cell symptoms if it was to work at all? Days, weeks?

I was diagnosed with oral allergy syndrome around 7 years ago as my on going eczema, rhinitis, fatigue, stomach issues, joint pain and allergic reactions seemed to fit that best.

Since then, especially after being critically unwell from covid a few years ago, my symptoms have worsened dramatically and I am beginning to question my OAS diagnoses. I have been brushed off every time by GPs for my symptoms due to ‘being a young woman’.

I have no allergies that show on blood tests, and I have never reached anaphylaxis (but I’ve been close!).

Any recommendations for diagnostic testing for MCAS? I’m nearly certain that I was misdiagnosed, but fear i’ll be told my doctors that OAS is a good enough excuse for my symptoms (however they will not treat them with anything other than standard dose Fexofenadine). I have recently moved to a new GP in a new city, so I’m hopeful their care will be more thorough :)

If anyone has any similar experiences or advice, I would love to hear from you!

Hello. I have had a ton of symptoms and comorbid issues since I was young, plus some newer symptoms that started post partum (14 months):

-Brain fog (childhood) -Fatigue (childhood) -Dizziness/lightheadedness (childhood) -Difficulty exercising (childhood) -Environmental allergies (childhood) -Scoliosis (childhood) -(ETA) Hyperhidrosis (preteen) -Migraine (teenager) -Depression (teenager) -Dizziness/vision blacking out when standing (teenager) -GERD (young adult) -Lactose intolerance (young adult) -Anxiety (young adult) -ADHD (young adult) -Depersonalization/derealization disorder (young adult) -Fibromyalgia (recent, post partum, doubt this one) -Rashes (started a couple of weeks post partum and are getting worse when they happen) -Slightly positive ANA (post partum) -Positive tryptase, 13.4 (post partum, this week)

I'm probably forgetting something. I have sought help from many specialists over the years: GI, ENT, sleep specialist, cardiologist, allergist, neurologist, psychiatrist, etc. Everyone has declared me healthy outside of the diagnoses above and has never given me a good explanation for my symptoms, and everyone writes a lot of it off as mental health. I truly feel that my mental health issues stem from whatever causes my brain fog and other issues, and not the other way around.

Before having my baby, I had my mental health and migraines under control. My allergies were being treated by Zyrtec and allergy shots, but they weren't getting worse. My brain fog and fatigue are constant and my worst, most life altering symptoms. The brain fog/DPDR has been literally constant since elementary school.

After having my baby, the rashes started, the allergies, are not improving, and my migraines are back, though not back to the chronic level. The rashes aren't very frequent. Sometimes I'll go weeks without one, then another week I'll have them multiple times. Originally, it was just hot, extremely itchy, and splotchy with no actual bumps. Over the past year, it's slowly gotten worse, to the extent that I've thought I caught poison ivy. It originally just showed up on my face, neck, arms/hands, and knees and lasted about 40 minutes. Recently, it was almost everywhere and lasted over two hours, and I had some wheeziness. Then, poof, it's gone, except for a couple of times where I had a preexisting small rash with no explanation. This, plus the slightly positive ANA and my mom's lupus got me an appointment with a rheumatologist. They ran blood tests and concluded it was fibromyalgia. I doubted this diagnosis because I don't have much pain outside of migraines and some muscle pain in my neck and back that I attribute to my scoliosis. I do have some joint pain elsewhere sometimes, but it isn't that severe. I felt like he was writing me off with that diagnosis. He also put "polyarthritis" in my file, but didn't really talk about it during the appointment and I don't know where that came from. He advised me to go to my allergist for the rashes. So, I did last week and he was amazing and listened to me. I showed him the photos of my rashes. He took me seriously and ordered a copper and tryptase blood test. He also added Azelastine to my regimen (Zyrtec and Flonase) to try to stop the rashes and said he wanted to redo my scratch test in December to see if my allergies have changed. I got the results back for the tryptase and it was positive at 13.4. I've since looked into these mast cell disorders and feel that there may actually be a good chance that that is what's going on. I'm trying not to get my hopes up as that is what's happened in the past when I thought I found answers.

So, what do you all think? Do my symptoms line up in your experience? I'm waiting on a call back from my allergist to discuss the results. Could you please give me some advice on what kinds of questions or tests to request to either rule it out or get the diagnosis? I really don't want this to be disregarded if it could be the answer I've been searching for. Feel free to ask me for more info. I do have brain fog, like I said, so who knows what I've left out. Thank you so much!

I really appreciate anyone in this community taking the time to fill out my survey. It's been hard finding respondents. If you have any questions about the survey, feel free to post.

https://forms.gle/QX6pLTdafZX8RdXy8

I have been on antihistamines due to getting a bunch of blood work and I can't tell if my mast cell activation disorder is in overdrive or if my allergies are causing the full body itching and rashes. Any ideas for how to cope? I have to go until Friday morning without them.

The title says it all, and I'm wondering if anyone else has been told this? As soon as I answered "mast cell activation disorder," the nurse said it was one of the diagnoses that bars me from donating. He told me why and I can't remember any of it. I've tried to find out on my own why it's a problem and I can't find anything. Anyone know what the big deal is?

I was diagnosed with MCAS and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome last week by my cardiologist. She gave me a packet of information that explained the syndromes in very scientific, technical terms, but that was all the information I was given. She started me on Famotidine and Loratidine, but after a week of taking medication I'm still light- headed and seeing double. My other symptoms have improved dramatically. No nausea or terrible headaches for a week. My symptoms get worse with activity. The more I move around, the worse it gets. I have an appointment with my regular doctor on Tuesday to discuss testing for Mastocytosis, due to the double vision. I've been reading as much information as I can, but I would love to hear from all of you about the things that have helped, the things that haven't, how you cope with symptoms, etc... I appreciate anything you can share with me.

When doing research, I’m seeing different ranges of normal for this test. My test results said under 5205 is normal but I’m seeing much lower upper limits elsewhere. Any insight to the different upper limits?

2,3-dinor 11B-Prostaglandin F2a, U Normal value: <5205 pg/mg Cr Value = 4908

Has anyone else experienced a tingling in their arms throughout the day? It’s on and off.. sometimes my arms go completely numb, mostly it’s the tingling sensation that’s been persistent. Mostly in the right arm, sometimes left… just wondering your experience with it and what helped, etc. I have a message into my doctor to discuss, but Reddit has been so helpful with everything I figured I’d post here too!

Been diagnosed w both. I'm in the DC area. Have a good immunologist who figured it all out but I feel like he just wants to manage symptoms instead of seeing how I can address my system. I think I may have systemic mastocytosis and need more in depth testing. I've looked for new docs but they are also about symptom management and don't even address the COVID part. Does anyone know of specialists who can address this in its entirety?

I’m interested in hearing about how other people discovered that they have a masked cell disease.

I’ve felt crummy for years, all through my teenage and adult life with a lot of seemingly random things. I’ve been to so many different specialists from rheumatologists, endocrinologists, allergists. I’ve ruled out a lot of illnesses so I felt like I was out of options and I kinda just accepted that I’d feel crappy forever.

Well, I went to a hematologist to get an iron infusion (heavy periods) but he paused while going over my blood work and asked a bunch of questions, then suggested I have some kind of mast cell disease. I felt seen! I felt HEARD! Idk if this is what I have but after reading about this, I think it is the most probable of anything else I’ve been tested for. Test results pending. If it doesn’t turn out to be a mast cell disease, at least I can rule something out.

Hey all I have mast cell I belive due to my pots today I had sever allergic reaction to latex and had to use my epi pen. My leg is THROBBEING. does anyone gave any suggestions to help with the pain. It's messing with my pots and how I'm sitting so it doesn't hurt makes my leg go tingly

Anyone else have this? I always thought it was so specific! I had a retained baby tooth until 30, with no adult tooth underneath it!

So, mastocytosis is a condition I've stumbled across quite a lot in my recent research, and I've realised it matches a LOT of symptoms I've experienced, including:

-Joint pain (which has been alleviated by taking quercetin and msm, which help control histamines)

and over the last year I've developed 'flare ups' with:

-Acid reflux (also a condition I've had on and off since I was young)

-Bloating/feeling bloated

-Hot flashes and feeling of being too hot/cold and always clammy or greasy (though not to the touch)

-headaches and dry eyes

-circulation issues, hands becoming freezing or blood suddenly rushing to my fingers

-concentration issues (also have ADHD but I'm medicated)

-general tummy issues

I haven't been able to figure out the trigger for said flare ups, annoyingly. My best guess is stress atp. But more and more it points to systemic mastocytosis

The list goes on, but anyway, is anyone here from the UK (Scotland specifically) and had any luck in getting tested/treated for mastocytosis or MAST cell conditions? Is it a condition doctors ever know about? I want to know my probability of managing to get help for it bc this is Not fun. Any suggestions or advice is appreciated!!!

What treatment for epilepsy

Hello!!

I am looking for a Mast Cell doctor in the Tulsa, OK area or one anywhere who does Telehealth & takes BCBS insurance!

I have recently been diagnosed with MCAS by my PCP but she hasn’t been super helpful in treating it and my symptoms are becoming unmanageable. I really need a specialist to help me get it under control but they’re super hard to find, I really don’t want to go through an allergist who’s going to make me withdraw from all my antihistamines for inaccurate testing as that’s honestly just a huge safety risk and from what I’ve learned any MCAS specialist knows that and won’t put you through that. Even on all my antihistamines I’m barely getting by so I know if I had to go off them I’d be in the ER by night one. The only thing keeping my airway open right now is Benadryl.

I am not in a position to be able to travel far or pay out of pocket unfortunately. If I really need to, I could probably go to OKC, Stillwater, or Norman, or any surrounding town, but no further than 2 hours.

All the doctors I’ve found online for Tulsa have turned out to have very little knowledge on MCAS so please only share doctors in the area if you have had positive personal experiences with them!

I also have EDS, POTS, Celiac disease, and suspected gastroparesis. I have barely been eating since March/April from reactions, nausea, etc… you name it. I’ve lost so much weight and I’m barely getting by. The POTS has been flaring really bad too so I am desperate for any help to get this all calmed down. I had to leave my job, move back in with my mom, and my whole word has been crumbling down from this flare. I am very much so over it 😅

Thanks so much to anyone who is able to provide any helpful information🩷

Forgive me if this isn’t the appropriate forum to ask but does anyone know of any research that proves or disproves mast cell diseases correlate to specific blood types?

I am A+ and was reading yesterday that A blood type is more likely to have some cancers over other types, which is what got me thinking…did my blood type increase my likelihood of having a mast cell disease?

Was just wondering if anyone experiences pitting edema with their mast cell flares? I will be going to a doctor just in case it’s something else, obviously! But just wanted to see what others experience has been… thanks in advance!

I got diagnosed and am really struggling with the diet right now. Is there anyone that is legit in the US or online that someone here can vouch for?

Any help is really appreciated

I have HaTs. Today while in traffic, with the windows down, by a Chik-Fil-A, a waft of chicken smell took over the car. My throat quickly closed up and I immediately lost my voice. I reached for my meds and started treating myself. Thank goodness I had rescue meds on hand. It all happened so quick and reacting to the smell of chik fil a is new to me. I don’t eat there. Is that a fragrance they pump out? Or actual chicken smell permeating the air in the vicinity? If its the actual chicken smell, then I wonder what it is I’m reacting to. Is pumping out fragrance to the general public not against ADA rules? I’m guessing not.
Anyway, just wanted to get y’alls thoughts.

I’m curious to know, did anyone have pregnancy difficulties or were you able to have a “normal” pregnancy without difficulties or symptoms? what was your experience like? Did you have to stop all meds? I was told that I might have difficulty with being pregnant because MCAS messes with hormones. ☹️ this scares me. ☹️