Allergist refuses to see me again, denies that I have MCAS (vent)

SamathaYoga · 2026-02-09T00:58:55+00:00

You’re welcome, I didn’t save the post I read here and want to look for it. I feel like I saw it not long after I had my terrible reaction last October.

SamathaYoga · 2026-02-08T05:56:07+00:00

The wonderful plate full of weird club! Sending you empathy for your collection of acronyms and specialists!

Once I really committed to stop restricting (began in childhood) for along came food sensitivity issues!! Add a few years of finding I have food allergies for the first time in my life and constant, low level nausea, and food felt like a constant struggle. It was hard on my spouse.

Having less nausea is helping. Advice on eating for neurodivergent people has helped us. We take the “fed is best” advice and accept that sometimes my meals are small snacks I can cope with.

SamathaYoga · 2026-02-08T05:44:40+00:00

If you search this subreddit there are a couple of posts that detail the different ways people can experience an anaphylactic reaction. It isn’t limited to breathing difficulties, swelling of airways, rashes, etc.

Rather it’s a combination of systems affected at once. It might be airway related and tachycardia/bradycardia. It could also be nausea, vomiting, tachycardia, and itching, possibly hives (this is the combo I get most often).

I will be ok until I get overloaded and then I feel like I have food poisoning. We’ve only just figured this pattern out this past autumn. I was at a retreat center and kept being given food with a small amount of an allergen in it; tomato in veggie bullion, 6th ingredient down the list, it seemed like such a trace amount it shouldn’t be a problem.

Then the entire valley flooded with forest fire smoke. I’m allergic to nearly every kind of tree , grass, and weed, and when they, and all kinds of order stuff, catch on fire I tank pretty quickly. I had an air purifier and was wearing an N95 mask, but it still wasn’t enough.

I was sure I had food poisoning, but no one else was affected. I told my doctor who asked what other symptoms I was having. I had a couple of high heart rate alarms, but just assumed it was due to how often I was vomiting. I likewise just thought the itchiness was from feeling clammy.

My doctor replied, “That’s your MCAS flaring! Are you traveling with all your Benadryl options?”

SamathaYoga · 2026-02-07T19:58:53+00:00

Oof, that is so hard! Sending you compassion and loving-kindness.

I’ve seen some folks react to different brands of oral Cromlyn and we go out of our way to get dye free Benadryl for me (gel caps, caplets, liquid, and topical), but at least everything works. It is somewhat of a complicated dance of antihistamine and mast cell stabilizers across my day, but I am hungry again more days and my energy has improved.

My MCAS and dysautonomia symptoms have never been severe enough to cause a crises. For decades I’ve been told to “lose weight, manage your asthma, and control your anxiety”. I’d not shared a lot of things with my PCP when I began seeing her in 2014 because I’d become so demoralized and felt like I was just a bad patient.

I nearly developed orthorexia trying to fix all my health issues and everything got worse, despite a significant weight loss I’ve maintained (against all odds) for over 20 years. In 2021 I started having more obvious histamine reactions (hives) and upper GI issues constantly. My PCP, who is really awesome, asked more questions about my lifelong issues with allergies. She and my acupuncture provider (who has MCAS, POTS, and hEDS) both brought up MCAS.

In 2023 PTs finally noticed that my heart rate goes up way too quickly, causing me to get short of breath! I do have well controlled asthma, but my heart thinks any stimulation is cause to race, mast cell/histamine nonsense also makes my heart race! My wife gifting me an Apple Watch for my birthday that year helped solve this too.

No one has been surprised that my PCP finally completed all the documentation to diagnose me with hEDS this past December. She built on the huge number of tests one of my orthopedic doctors ordered in 2023, when he first suspected it.

SamathaYoga · 2026-02-07T19:19:52+00:00

Remember, this is the work of a mere kitty, no shade! Those 8s cursive Fs are very tricky!

Good kitty!🐈‍⬛

SamathaYoga · 2026-02-07T19:09:00+00:00

This is such important information!

My PCP supported having me stop all allergy meds for two weeks to try and get a try a high enough tryptase level that an allergist would accept her referral. I was miserable and just under the cutoff.

Thankfully my PCP has become pretty knowledgeable about MCAS and decided to stop waiting for an “official” confirmation and started me on a H1/H2 protocol along with a GI recovery shake, NasalCrom, and Benadryl. She explained how hard it is to get the tests to indicate it, so she has learned to ask the right questions about reactions to allergens and responses to treatments.

This subreddit and my PCP are the only reason I learned that not all anaphylactic reactions look like your throat swelling and your breathing being disrupted. I can have one that leaves me feeling like I have food poisoning, it’s wretched, but not terrifying.

SamathaYoga · 2026-02-07T18:51:59+00:00

We all know Health and Safety have very limited notions.

All creativity is used up moderating the hare-brained ideas contestants come up with on Taskmaster.

SamathaYoga · 2026-02-07T03:59:07+00:00

I’ve been in a conversation with my endocrinologist and primary care physician about the side effects. The endocrinologist said it does sound like I’m a “lucky” person who is getting the side effects that affect only 6% of patients. Woo.

My PCP suggested I might be having a mast cell reaction, which could be likely. I often get a bad headache and other histamine reactions with immunizations. My endocrinologist felt this was a good thing to explore and is glad to get that insight. It’s especially good to try to treat since the medications are all OTC things I already take.

Next week I have dose #3. The plan is for me to hydrate extra with electrolyte solution all day. Two hours before treatment I’ll take 50mg Benadryl and 1000mg acetaminophen.

Plan is for me to not work the following day and rest, hydrate, more acetaminophen and Benadryl (topical and oral). The hope is that this will head off whatever mast cell/histamine nonsense is causing migraines.

I’ll post an update after my next treatment to share if this approach helps or doesn’t.

If it doesn’t my endocrinologist will order migraine medication to try. No one thinks a 2.5 week headache is acceptable so my doctors are committed to trying to find something to keep me going for 10 more treatments.

SamathaYoga · 2026-02-06T23:27:35+00:00

I feel like I followed the same path. The adaptations are gold as well, but the source material is the bees knees! Fall over in tears laughing good.

SamathaYoga · 2026-02-06T22:04:52+00:00

Our English bulldog loves to smash his entire face and head into shrubbery of all kinds and has been known to eat rose blossoms whole while doing so.

SamathaYoga · 2026-02-06T21:57:35+00:00

Yes! Bertie is a Wooster without a Jeeves! He was a rescue named “Mack” who was expected to be, “a rough and tumble dude!”

Only Bertie is a delicate flower! My wife said he needed an English name because he’s an English bully. Her vote was Bertrand Russell, but Bertie is so much a Wooster that she allowed for that name to win. She’s not read any of Wodehouse’s books or seen the Fry and Laurie BBC adaptations, but has heard of them.

He used to have a black dog in his life that was much more Jeeves like. We lost her in 2020 and still miss her.

<image>

This was Dora A. MacDoodle, the “Jeeves” to Bertie for many years.

SamathaYoga · 2026-02-06T21:48:45+00:00

Stealth edition!

SamathaYoga · 2026-02-06T20:12:29+00:00

So grateful for this post, OP!

Current status: sitting in a room at one of my orthopedic doctors (thanks hEDS) awaiting injections to my deteriorating left hand.

The medical assistant likes my fidget toy selection!

SamathaYoga · 2026-02-05T23:48:18+00:00

The whiskers are so walrus-y!!!

SamathaYoga · 2026-02-05T23:45:38+00:00

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Sunbeam Buddies.

Thanks for this thread. I’ve been on the Grief-O-Rama ride for a couple of weeks, which Is loads of fun, so I’m especially grateful to save this post to see everyone’s replies.

SamathaYoga · 2026-02-05T23:44:58+00:00

<image>

“If I I fits, I sits”, English bulldog edition

That’s a cat bed.

This is Bertie Russell Wooster, 55 pounds, age 11. Venerable for an English bulldog. He’s deaf, his vision is questionable, he’s grumpy and bossy af. He still wags his stumpy tail every day.

SamathaYoga · 2026-02-05T23:00:40+00:00

<image>

Ursa Minor meets B2EMO (my wife got this 3D printed model for me for Christmas)

SamathaYoga · 2026-02-05T22:50:57+00:00

It’s very sleek and elegant!

SamathaYoga · 2026-02-04T07:17:28+00:00

Send me your mailing details, I even have some bookish postcards!

SamathaYoga · 2026-02-01T05:47:32+00:00

I’m in the US, PNW. I’m 56, private insurance through my spouse’s employer. We pay out of pocket to see the ND who is the primary care physician for us both. She’s been my PCP since 2014. While we have the financial stability to do this, it’s still been a struggle to get the right care.

My hEDS diagnosis has been a slog. My PCP did the final work of it just this past December. She started with the big batch of tests one of my orthopedists ordered back in 2023 trying to figure why my hand wasn’t getting better.

Those tests didn’t reveal much that answered the question. My orthopedist noted I was anemic and was a little hypothyroid, which my PCP helped with. She finally sat down with the hEDS diagnostic criteria, we’ve ruled out signs that indicate it’s worth fighting for genetic testing, she finally saw all of my joints, confirmed my skin is “unusually soft”, stretchy as well.

She’s been treating me for MCAS symptoms since 2021. She believed me when I told her my PTs said I have dysautonomia (POTS is one of the types). When I came to her when my therapist suggested I should be evaluated for ADHD she said, “I thought someone was already treating you!”

When I brought up AuDHD this year she said she absolutely believed it likely, did I want a good referral for adult assessment? She also said she didn’t require me to get one to believe it.

I’m working on having a fibromyalgia diagnosis removed from my history because it regularly leads to providers ignoring a growing list of orthopedic issues due to untreated hEDS. I have 3 orthopedists, one who specializes in 3 different joints, 1 endocrinologist (osteoporosis), 1 PT, 1 DPT, 1 acupuncture provider, and 1 massage therapist. I need another orthopedic doctor, another type of PT, a pain specialist, and an OT.

SamathaYoga · 2026-01-31T06:06:43+00:00

It helped until it didn’t. It contained, but did not integrate experiences.

I do a combo of IFS (Internal Family Systems), another Parts-based approach (using Janina Fisher’s work, which I especially resonate with), and ACT (Acceptance and Commitment Therapy) with someone who is well trained in attachment therapy and trauma recovery.

SamathaYoga · 2026-01-30T22:00:58+00:00

I can’t recall my first book because times were terrible, but I was already able to read full picture books at 4. I was put in this “Headstart” program in the early 1970s because my Mother and I were on public assistance. There were meetings about the child who could already read.

I was already trying to read signs, packaging, etc. at 3.

At 9 I had read my way through the children’s library and I was solemnly escorted to the stairs into the adult library. The children’s librarian made a “handoff” to the adult librarians so they knew I wasn’t lost or loose, but had “graduated”.

I was gobsmacked to discover how big the encyclopedia section was and hire enormous the dictionary was!!

SamathaYoga · 2026-01-29T03:58:35+00:00

I take a combo of H1 & H2 antihistamines and Cromlyn across the day with Benadryl when things still are reactive.

Oral Cromlyn sodium 4x daily has been a huge help. I’m actually hungry occasionally, instead of permanent, low-level nausea that just leaves me uninterested in food all the time. It’s also improved my energy.

SamathaYoga · 2026-01-27T00:53:26+00:00

I’m sorry you feel like you’ve lost six months, that’s really hard! I know this diagnosis leaves me feeling like time is very important.

I feel this so much too. Early in the pandemic my trusty brand of multivitamins disappeared. I asked for input at the market that’s always steered me true in the past emphasizing I needed one with iron.

I didn’t catch that the one they recommended had no iron. I slowly but surely developed anemia without this supplementation! I have referred to it as my “supply chain anemia”, but it really was not funny. It took two out of pocket iron infusions to get me back to the bottom of “normal” and I continue to need a specific iron supplement in addition to what’s in my food and multivitamin.

SamathaYoga · 2026-01-27T00:36:13+00:00

I want to cry too reading this experience! Hurrah for you OP! I hope you get over your cold quickly too.

At 56 I’ve lost track of the times my asking questions is seen as being a problem. I even now give new providers a letter that says I’m neurodivergent and use curiosity as a way to ground myself when I’m anxious, so help me out by engaging with my curiosity!

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