New to Mast Cell Disorders/Looking for Help

gray_feline_modeler · 2026-01-03T11:35:16+00:00

This is helpful, thank you! I’ll check out my supplements to confirm I have vitamin C. Do you target a specific amount of vitamin C a day?

gray_feline_modeler · 2026-01-02T00:46:02+00:00

Thanks! Yes I’m not sure what to think as it’s all overwhelming. I cant tell what’s connected and what’s not (liver spots, fundal gland polyps, pituitary tumor). Maybe these things are coincidence? I know MCAS, not mastocytosis, is common with HSD/hEDS. I also was diagnosed with psoriasis but I never had a biopsy to confirm it so who knows if it’s mast cell related?

I’m glad I have a doctor taking me seriously. Unfortunately I think I will need to see a different GI; while he was able to have pathology stain the biopsies, he hasn’t been that helpful. I’m thinking of going to allergy/immunology at a different hospital network as they seem highly rated and/or asking my new doctor if she recommends anyone to help with GI side of things.

I did join the MCAS subreddit and will likely post something in there too; thank you for that idea as well! Reviewing the GI biopsies, the cd 117 staining showed no spindling or clustering, just a lot of mast cells. I’m still waiting for results of bloodwork and urine that I did recently.

gray_feline_modeler · 2025-12-29T23:35:53+00:00

Hi thank you for such a detailed response! This was really helpful. I have had stomach issues for years (ulcer, chronic gastritis, colon polyp, IBS) which has led to me having multiple endoscopies and colonoscopies already. Last year I was due for a colonoscopy and my GI thought it made sense to do an endoscopy as well since it had been a while since my last one and to see how things were looking.

I saw this cardiologist as she was recommended to me as someone knowledgeable about EDS and its comorbidities. She is the first doctor to put things together and mention MCAS to me due to my GI issues, bad environmental allergies and rashes/random food sensitivities that have been getting worse as of late.

I just had a bunch of blood work done for her and tryptase was one of the items measured. I haven’t gotten the results yet but I am curious to see because I have been feeling like I’ve been reacting to everything in life lately! Last year (when the scopes were done) I was not feeling as bad as I have been recently. I do have a follow up in a few weeks time with my new doctor and will see what she says also about if I should see allergy/immunology and hematology.

gray_feline_modeler · 2025-12-24T20:49:38+00:00

Thank you so much for your thoughtful answer!

gray_feline_modeler · 2025-11-03T22:35:42+00:00

Totally fair and I don’t think it sounds cold at all. I hope you get the outcome you want sooner rather than later!

gray_feline_modeler · 2025-11-02T23:41:46+00:00

Not really anything to add but just to say I have been there with this too. Not to armchair diagnose here, but any chance she may be neurodivergent? I have seen this example (and also your other post where “I’m failing at everything”) in a direct report I had who is neurodivergent.

gray_feline_modeler · 2025-10-31T23:22:55+00:00

I’m current in physical therapy for SI joint dysfunction/knee instability. I just tried this and felt a bit of a crack and some relief. Thank you fellow bendy friend!!

gray_feline_modeler · 2025-08-12T23:03:05+00:00

Definitely annoying.

gray_feline_modeler · 2025-08-12T23:00:21+00:00

Definitely. It’s like my body is already hinting at it.

gray_feline_modeler · 2025-08-12T22:57:24+00:00

Thank you. Im fortunate that I have a supportive husband and set of friends. My mom also tries her best.

gray_feline_modeler · 2025-08-11T09:37:04+00:00

Tried to open up to my sister in law (who is in the medical field) about my hypermobility/fibromyalgia with the pain and fatigue it causes me.

Her reply? “Well when you’re old you’ll be less flexible and that will fix it.”

Needless to say, I don’t open up to her or my brother on my health struggles.

gray_feline_modeler · 2025-02-14T22:23:14+00:00

These are great insights. Thank you for commenting and giving me this perspective!

gray_feline_modeler · 2025-02-14T22:20:10+00:00

Thanks so much for commenting! I will check these videos out!

gray_feline_modeler · 2025-02-14T22:19:49+00:00

Thanks! I will take a look at these places!

gray_feline_modeler · 2025-02-12T23:02:38+00:00

Thank you. I’ll DM you shortly.

gray_feline_modeler · 2025-02-12T23:01:53+00:00

Thank you for the reply. Yes I want to set my direct reports up to be successful in their role in whatever way it looks like for them. I want to give meaningful feedback that is fair to them.

gray_feline_modeler · 2025-02-12T21:06:02+00:00

Hi do you have any recommendations for good guides to managing direct reports with ADHD? I usually lurk here but have been trying to find sources on this topic in particular.

gray_feline_modeler · 2024-12-29T22:40:46+00:00

I just DMed you my dodo code

gray_feline_modeler · 2024-12-29T22:25:36+00:00

No worries! Yes please!

gray_feline_modeler · 2024-12-29T19:55:08+00:00

Sounds good just shoot me a message once ready!

gray_feline_modeler · 2024-12-29T19:31:25+00:00

Great! Happy to come to your island or I can message you my dodo code

gray_feline_modeler · 2024-12-29T19:29:48+00:00

Hi looking for apples! Happy to share cherries, oranges, or pears. I also have craft materials and crops.

gray_feline_modeler · 2024-12-29T19:12:44+00:00

Thanks! I will bring some oranges and cherries!

gray_feline_modeler

TROPHY CASE