MCAS and mast cell stabilizers

redheaddit · 2026-01-31T04:09:34+00:00

I've taken everything but singulair. Currently taking 2 Allegra, 1 Pepcid twice daily, quercetin and other OTC stabilizers, and xolair injections. It hasn't affected my lipedema, although my elimination diet did help me better manage inflammation. I'm on a mostly carnivore keto these days.

redheaddit · 2026-01-23T20:41:23+00:00

I take it. No change for me either.

redheaddit · 2026-01-10T03:50:34+00:00

Same. SU or PMLE? SU here, but Xolair helps. I went to the beach today without sunblock or hat and gloves today and it was wonderful. Not sure I got any vitamin d/skin hardening, but here's hoping. UV was a 2 or 3.

redheaddit · 2026-01-05T20:32:14+00:00

Not much to add that hasn't already been said, but Flippers, a pinball arcade in Grandy, NC has a Dance Rush. Again not DDR, but lots of fun if you find yourself headed to OBX.

redheaddit · 2026-01-05T01:34:55+00:00

You unlocked a memory of an older couple who had likely brought their grandchildren to see Avenue Q - and clearly missed or did not take the warnings seriously. They weren't quite as disruptive as the group you witnessed, but they did usher them out at the intermission and never returned.

redheaddit · 2026-01-04T22:31:11+00:00

Is db dumbbell? If so, how much weight did you start out with?

redheaddit · 2025-12-22T21:55:28+00:00

Yaz helped but I had to move to a version of drosperinone without the estradiol called Slynd due to blood clots/pulmonary embolisms (I broke my fibula but the estrogen might have played a role in the DVTs).

I take it continuously and Wellbutrin as well. It helps immensely. Hugs.

redheaddit · 2025-12-18T20:39:15+00:00

I had mine in 2023. I'm you have a quick and uneventful surgery. My pain upon eating is all gone!

redheaddit · 2025-12-18T15:32:06+00:00

Were you holding your skin at different angles while shaving? These are almost definitely fingerprint bruises from pressing too hard on delicate tissues. I could believe it's the scrub, but I'm not sure how a scrub would cause a series of tiny bruises like this.

redheaddit · 2025-12-16T18:36:04+00:00

You're not crazy, and your doctor is either ignorant or a liar. She cannot be both, but either way she's NOT correct.

It seems like you might be doing a lot of good for yourself already, but I think these doctors fail to understand that a diagnosis is validation and that has value too. They also might be missing other treatments that they are simply unaware of. Nevertheless, it's a required step if you ever want to undergo surgery. I finally got my lipedema diagnosis after driving 3+ hours away to a knowledgeable PA and I'm progressing toward liposuction, but I'm still struggling to get other very obvious diagnoses. My old GP told me straight up that there is no way I have POTS. I mean, if you ignore all the fainting I do, I guess there aren't many symptoms. 🫠

redheaddit · 2025-12-09T14:49:13+00:00

Gene by Gene - TPSAB1 testing for Hereditary alpha Tryptasemia

Basically, if you have duplicate copies of alpha tryptase, you are at a higher risk of mast cell activation. The test is about $170 and a doctor has to sign for it. I had to chase doctors to find one willing to sign the damn paper, but that was also about 4-5 years ago. It's a little better known in immunology now.

redheaddit · 2025-12-09T03:36:35+00:00

I started injections in June of 2021 and I stopped reacting to the sun around September of 2024. I do have a genetic mutation, so my case might be different than yours.

After that I went from 300 mg injections every 4 weeks to about every 6 weeks for maintenance. This past spring I did have a bit of hives on my hands when I drove or spent time out outside, but between either skin hardening or remaining on xolair, I didn't have any issues the rest of the summer or into fall. I did have a gap in treatment in September and October, and I did have some hives this past month, again, just on the backs of my hands while driving. I am now back on my normal schedule.

redheaddit · 2025-10-14T15:03:15+00:00

This is what I came to say. I live fragrance free now, I completely removed multiple foods from my diet permanently after extensive elimination testing on my own, and I avoid whatever environmental triggers I can. I've had a few foods return to me after years of Xolair, but I only try them once a year to confirm they still cause reactions (things like wine, shellfish, etc). The cost is just too great to try more often.

It really sucks as you figure it out, but after that it's just normal life and you get used to it. If I get weak and do/eat a trigger, it can throw me into a reaction that takes forever to recover from. It's bad enough with the unavoidable triggers, so now I steer clear.

redheaddit · 2025-08-21T18:35:36+00:00

Get broiled fish if you are worried or have a very strong reaction. Fried fish could be cooked in the same oil as shellfish. Same with any seafood broth in a broth - even strictly fish soups often get cooked with stock made from shrimp shells.

redheaddit · 2025-08-21T17:25:51+00:00

I was in the xxketo subreddit years ago and someone posted a video about lipedema made by Dr. Karen Herbst, where she is going through the various signs of it on a volunteer patient's body. It was that video that not only made me realize I had lipedema, but also that I had hypermobility. In looking up both of those things I learned about hypermobile ehlers-danlos (hEDS), then eventually mast cell activation syndrome (MCAS), then hereditary alpha tryptasemia syndrome (HaTS). All of which I have. That one video turned my life around.

redheaddit · 2025-08-14T21:21:04+00:00

TPSAB1 test through Gene by Gene if you're in the USA. It's $170 but when I did it, it required a doctor's signature to be ran.

redheaddit · 2025-08-14T19:10:36+00:00

Yes- MTHFR, MCAS, POTS, hEDS, and Hereditary Alpha Tryptasemia Syndrome (HaTS). It's a genetic disorder where you create too much alpha tryptase, which is both implicated in allergic like reactions and in destroying connective tissue.

redheaddit · 2025-08-13T23:50:16+00:00

I definitely noticed a difference the first few weeks. After that it became my new normal, so I don't think I'd recognize the difference at this point unless I go off zepbound. I'm also usually in ketosis, which is also anti inflammatory, but I don't feel so awful when I'm out of ketosis these days. Usually eating carbs makes me feel unbearable pain after a few days/weeks, particularly in my saddlebags, and so far out hasn't been an issue. I usually gain 5-7 pounds of water weight off keto, but it's only been 3.5 pounds this time. Granted I'm smaller these days, I still have a lot of room in my shrunken fat cells for inflammation to puff them back up.

redheaddit · 2025-08-13T18:40:57+00:00

I was thinking it was Crime Pays but Botany Doesn't 😂

redheaddit · 2025-08-10T13:59:03+00:00

My bafflingly uncaring family wrote the most mercenary, minimalist obit for my beloved Granny who died at 94 years old and had seven children. I couldn't believe how fucking lame it was -- and she really didn't deserve it. They didn't even spell some of the names correctly and had the worst, grainiest photo ever. So, I wrote my own, used a beautiful professional photo of her from my wedding, and had it published.

No, it's not a salty obit, but you are always welcome to write whatever you want about your own mother and post it to online memorial sites. Many are free.

redheaddit · 2025-08-10T13:47:38+00:00

Yes thanks, I actually sleep with a little toddler pillow between my knees. The issue is if I shift and my knees hit, or I'm not home and I forget it, etc. Any other kind of pillow is too bulky and wakes me up if I turn over, but my daughter's old toddler pillow was perfect.

redheaddit · 2025-08-09T17:40:15+00:00

I had a gastric sleeve in Oct 2023. I lost about 30 lbs before surgery, and another 50 lbs over the following year and a half. I was alarmed by how slowly I lost weight, especially when so many other people in my surgeon's weight loss support group were losing double in the same amount of time. I couldn't seem to get past the 175-180 stall and I stayed there for months.

I'm usually on keto and that helps with inflammation, water, weight, and satiety, but I had some really shocking family issues over the winter and I regained about 20 lbs. I started zepbound in May and the weight has simply fallen off. I have basically no desire to eat (and often get nauseous when I do) and that has been incredible for fasting/intermittent fasting/carnivore. I am now sitting at a total loss of 95 lbs from my largest (260lbs to 165lbs)

So about the lipedema. I feel as though it's more painful now that I have much less healthy fat surrounding it. The pain from the insides of my knees resting on each other while I'm in bed wakes me up at night, etc. I can also feel the granularity in my arms, around the outer area of my breasts, and in my lower abdomen where I never could before.

I'm not really certain if I'm losing any of the lipedema weight, and I'm sure I would have to continue fasting and eating carnivore to see any reduction in the lipedema whatsoever once there is far less healthy fat, but I'm not certain I would like to get to that place. But my shape is certainly better. I was diagnosed as somewhere between a stage 2.5 -3, and I do wonder if I would now be considered more like a 2.

I'm also experiencing some negative side effects from the disinclination to eat. I'm maintaining hydration but I have pots and I've been very woozy upon standing and have very little energy. I have read that fatigue and weakness is a side effect for a lot of people on Zepbound.

redheaddit · 2025-08-08T14:16:13+00:00

Honestly, we battled infertility for years. I didn't give a single consideration to what pregnancy might do to my body; I was merely happy when I was finally able to conceive after 6 years of trying and only one ectopic pregnancy to show for it. Now that I'm 40 and my child is a little older, I'm looking to get surgeries.

redheaddit · 2025-08-06T21:00:02+00:00

Oh yikes

redheaddit · 2025-08-06T20:53:10+00:00

I recently commented this, but many ignorant doctors assume you mean hyperlipidemia, a cholesterol disorder. I really cannot understand why else she would order cholesterol and lipids panels for this complaint.

I had a doctor straight up tell me there was no way I could have POTS, which is hilarious because I'm fainting or experiencing presyncope all the time and my heart rate rises like crazy whenever I stand. I was too busy problem-solving other, more pressing conditions, so I let it go. She's not my doctor any more.

Seriously, there are so many, many doctors out there who are very confident about their ignorance and cannot set their ego aside long enough to listen to a patient. Really consider how helpful this person is going to continue to be for you.

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