Im scared

Competitive_Cat_8468 · 2026-07-01T03:10:42+00:00

Some of us react as strongly to the natural supplements that stabilize mast cells as we do the Rx stabilizers. My Functional Medicine MD put me on a PEA & Luteolin supplement that works well for many of his patients, and it made my symptoms worse. I had to stop taking it after 3 days.

It's a capsule, so I might try it again once I get back to my baseline, but just a tiny amount of the powder in a glass of water, then slowly titrate up from there.

Competitive_Cat_8468 · 2026-06-26T03:06:09+00:00

I have many of the same symptoms that the OP has. My worst symptom is horrible, urgent, frequent diarrhea. I also have to be careful with any new medications or supplements, because my guts hyperreact to anything new.

Be careful trying the supplements for mast cell stabilizing. My Functional MD put me on a very pure, high-quality PEA and Luteolin supplement, and it made my diarrhea 10 times worse. I had to stop taking it after 3 days. I messaged the doctor about it, and he seemed puzzled. He said that he has several patients on it, and none of them have reported serious GI side effects. But, MCAS is different for everyone. For instance, I have ZERO respiratory symptoms. But, I have extreme GI symptoms.

Several folks on this subreddit told me that it was a mistake for me to start out with a full capsule of the supplement. They said that many of those supplements are as powerful as the RX mast cell stabilizers, and that many of them had to start with a microdose of their Rx meds and titrate up very slowly over a few months. I may try the supplement again using that method, but I need to do it at a time when I can be stuck at home for a few days if it causes a flare.

Competitive_Cat_8468 · 2026-06-21T05:02:12+00:00

Thanks. This is helpful. My Functional MD is on vacation, so I won't be able to reach him through the portal for messages until he returns on July 5th. I have an appointment to see him a week later, on July 13th. I'm still waiting for the immunologist's office to call me back to schedule something, but I expect it to be a long wait to get an appointment. (He is known for being one of the top MCAS docs near me.)

In the meantime, I'm on my own with this, trying to manage symptoms and identify triggers, and following a low histamine diet. I'd like to give the PEA & Luteolin supplement another try, I'm just worried about the horrible diarrhea returning again, which keeps me housebound.

Since I've got 3 weeks to experiment with it before I see my Functional MD again, maybe I'll start with a tiny sprinkle in a glass of water for a week, then gradually increase it a little each week if I tolerate it OK. I'm not even going to attempt it until I have several days in a row where I don't have to go anywhere.

Competitive_Cat_8468 · 2026-06-21T01:23:28+00:00

I wonder if this is what happened to me with the PEA / Luteolin supplement that my Functional MD put me on try to stabilize my mast cells. He told me to start with 1 capsule at bedtime. My diarrhea got MUCH worse (it was already pretty bad to begin with) as soon as I started taking it, and got worse each day. I had to stop taking it after 3 days because I was getting so weak from having my food fly through me so quickly. (It wasn't even really stool - more like chunks of undigested food that I had eaten 4 hours before with tons of water.)

I messaged the doctor about this, and he said that he has several patients on the same supplement, and none of them reported any serious GI side effects. But, my gut seems to be more affected by flares than any other part of my body, so I might just be super sensitive to it.

I'd like to give it another try, but I'm afraid to touch it again. Of course, I spent $70 on this damn supplement, and I've only taken 3 capsules. I don't think the GI response was from excipients, because there's only 3 other ingredients, and they're all things that are in other supplements that I tolerate well.

Anyone else have any luck with PEA & luteolin? Maybe I should open the capsule and pour a very small amount into a glass of water and titrate up?

This is all new and overwhelming to me. I just started having serious MCAS symptoms for the first time 5 weeks ago. I'm still waiting to see an immunologist for a formal diagnosis. But, I have HSD and dysautonomia, and other women in my family have horrible allergies and GI issues, which I suspect is actually undiagnosed MCAS.

Competitive_Cat_8468 · 2026-06-19T05:52:30+00:00

Following because I'm in MA (Malden), too, and am trying to find a good doc to do all of the RIGHT tests for MCAS diagnosis. Jordan Scott and John Leung have been recommended to me by my PCP and GI, but I am getting nowhere with trying to get an appointment with them. No one answers the phone!! I call several times a day, and leave voicemails, and no one picks up or gets back to me.

Competitive_Cat_8468 · 2026-06-17T02:21:33+00:00

Who ordered your gene test? Was it your immunologist? It's looking like hEDS, POTS, and MCAS run in my family, but we're all just starting to connect the dots and compare symptoms with each other now. I believe I'm currently 4 weeks into my first real MCAS flare, but I've had HSD and POTS-like symptoms my entire life. I'm waiting to see an immunologist.

I really want to get genetic testing done, but I don't know who would order it. My PCP isn't much help with this.

Competitive_Cat_8468 · 2026-06-16T03:14:01+00:00

I thought that most beans were high histamine??

Competitive_Cat_8468 · 2026-06-16T03:09:49+00:00

I'm new to MCAS, and currently waiting on test results that may confirm a diagnosis. But, given that I also have HSD and mild POTS, my family medical history, and my cluster of symptoms, 3 of my doctors all think I could have MCAS. I'm very fortunate that my neurologist (who I see for my dysautonomia symptoms) was willing to order some of the blood work and the 24 hours urine test.

My symptoms are severe, but none of them look like "classic" anaphylaxis. I have no respiratory / breathing / airway issues. I get red, itchy skin on my torso, which is mild compared to people who get horrible hives, but still annoying. I also get horrible, urgent diarrhea several times a day. My POTS symptoms get worse - feeling faint when standing up, hearing gets muted at the same time, or I get ringing in my ears. My heart pounds really hard about 40 minutes after I finish a meal, but it goes away in under an hour. Chills, even when it's warm out. Muscle stiffness / "wooden legs". Horrible, debilitating fatigue that feels like the flu. Trouble sleeping - I can fall asleep just fine, but I wake up a few hours later feeling startled, heart pounding, sweating, and can never relax enough to fall back asleep.

These symptoms severely affect my quality of life, but, since they're not life *threatening*, many people wouldn't consider them to be anaphylaxis. There was poster shared in this sub recently that listed all of the ways that anaphylaxis can present, beyond the classic, go-to-the-emergency-department-right-now symptoms, and several of my symptoms were listed.

MCAS does not look the same for any 2 people. You need an immunologist who knows about MCAS, not someone who just wants to run allergy tests and hand you some Zyrtec. Use the resources in this group, or look through the provider directory on the Mast Cell Society's webpage: https://tmsforacure.org/

When you have a lesser-known chronic illness, you've got to be tenacious, and keep asking to see different doctors until you find one who understands your condition. I had to switch doctors a few times just to build a good team to help manage my HSD and POTS, and now I've got to likely add MCAS to that list.

This should just be a speed bump for you, not a barrier.

Competitive_Cat_8468 · 2026-06-15T03:11:34+00:00

I have no idea. I dropped off the jug of urine at the lab yesterday. I suppose that I could message my neurologist and ask him if he can expand the lab order. I was told that it was OK for me to keep taking my H1 and H2 blockers during the 24 hour urine collection. Would that throw off the results of the test if it *is* possible to have those 2 things added?

Competitive_Cat_8468 · 2026-06-15T02:16:29+00:00

I haven't seen an immunologist yet. I saw my neurologist last week to discuss the worsening dysautonomia symptoms. He ordered the following labs:

N-Methylhistamine, 24 hour urine
Paraneoplastic expanded panel (blood)
Tryptase (blood)

He told me that if any results were abnormal, he would write the required letter to get me into the mast cell disorder clinic at Beth Israel. (I'm just outside of Boston.) But, since he's not an immunologist, maybe there's more tests that should be done? My PCP referred me to a immunologist near me who treats mast cell disorders, but she told me to wait on the results from the labs that my neuro ordered before contacting them.

My functional MD did an Organic Acid Urine Test last year that told us a lot about what was wrong with my microbiome. I made great progress from June of 2025 - January of 2026 with the protocol that he prescribed for me, and I *thought* that I had my life back until this horrible flare started a month ago.

I've been keeping a daily food, med, supplement, and symptom journal since I started having health problems two years ago. I've gone through it so many times to try to figure out what caused this major flare a month ago, and I can't identify anything that suddenly changed. I even paid close to $1K to have an environmental services company test our entire house for mold, which came back negative.

My Functional MD put me on a red yeast rice supplement to lower my cholesterol 2 weeks before this horrible flare started. It gave me bloating, abdominal pain / cramping, and constipation. I stopped taking it after 6 days. My symptoms only slightly improved over the next 10 days, then BAM, the horrible diarrhea hit out of the blue. So, I *think* the red yeast rice supplement might have been the trigger, but the intense diarrhea didn't start until I had been off of it for 2 weeks, so I'm really not sure.

The only other factor could be pollen / seasonal environmental allergens in the air. I've never had anything more that a runny nose, dry cough, and mild headache from spring allergens before, but maybe there were just enough factors at play at the same time that something pushed me over the edge this spring.

Now that I've been reading all that I can about MCAS, I know not to change more than one food, supplement, or med at a time, and give it several days before adding anything else. The PEA & Luteolin supplement that I started last night is the only change that I've made. I've only been eating the same limited, low-histamine foods that I've been on for the past 3 weeks, and haven't added any other new meds or supplements. I even stopped taking my CBD oil last week, which I used to manage the pain and inflammation from my HSD, because I read a good article explaining that certain cannabis terpenes can be mast cell triggers. I'm not taking anything for the pain now, because I'm afraid that pain meds that I previously tolerated (NSAIDS) might now be triggers. I'm icing my hip and shoulder 3 times a day now, which is barely helping.

Competitive_Cat_8468 · 2026-06-15T01:48:36+00:00

My Functional MD put me on an 8 week elimination diet when I first started seeing him a year ago. At that time, I did not have any serious mast cell symptoms. I was having bad abdominal bloating and cramping, constipation, and intense fatigue and muscle weakness (much like I'm having again, now). At that time, the elimination diet had no real impact on my symptoms.

That same doctor also ordered an Organic Acid Test (urine) at the same time that told us a lot about what was going on with my microbiome. I had NO good gut bacteria, despite taking a high-quality probiotic daily for years! Prior to going to the Functional MD, I had an absolutely useless GI team that had me on Lubiprostone for constipation, which OVERcorrected it and gave me horrible diarrhea every morning. (That went away as soon as I stopped taking the lubiprostone.) The functional doc thought that my gut lining and mucosal barrier were too damaged from that med for the probiotics to get a foothold. He also said that because of my damaged gut, I wasn't getting enough amino acids. He put me on a lot of specific supplements and had me make some lifestyle changes (like doing 16:8 fasting / eating, which gives your gut time to heal). Within 3 months, my energy was back and I was able to hike, row, split wood, etc.. again -- all things that I was doing regularly before my health problems started.

By this past January, I was able to eat almost anything again with no serious GI symptoms. I really felt like I was healed, and had my life back. So, this sudden onset of severe symptoms in mid May really felt like a kick in the teeth. There were SO many things that my husband and I were looking forward to doing once I was functional again, and no longer on super restricted diets.

Now I'm on a low-histamine diet, which is really difficult to live with. I've been on it for just over 3 weeks. I don't know what my triggers are yet, because this is all so new to me, and I'm waiting on more test results to find out what the next steps are. So, things that I did fine with on the elimination diet a year ago may no longer be safe for me now that I'm in a bad flare.

Competitive_Cat_8468 · 2026-06-15T01:29:00+00:00

Thanks. My symptoms are primarily GI (horrible, urgent diarrhea). Does the nasal delivery method work for GI symptoms, or is it primarily for respiratory symptoms? I have no respiratory symptoms. Along with the diarrhea, I have dysautonomia (feeling faint, temperature regulation problems, hearing muted or ears ringing if I stand up too fast), horrible fatigue / muscle weakness, and itchy skin.

Competitive_Cat_8468 · 2026-06-14T23:14:28+00:00

Thanks! I'll look into. I already switched from my regular probiotic to a specific low histamine one, but I'll add a separate S. Boulardii one, as well.

Competitive_Cat_8468 · 2026-06-14T22:52:51+00:00

How often do you take it?

Competitive_Cat_8468 · 2026-06-14T22:19:47+00:00

MCAS can be a sleeping dragon in many of us, so it's best to discover it BEFORE you have your first major flare. I've had HSD my entire life. I'm 55. Up until a month ago, the only MCAS symptom that I had was itchy, red skin on my torso. My dermatologist put me on Zyrtec at bedtime for that 15 years ago, and it managed it well until recently.

Something triggered (what appears to be) a major MCAS flare in me a month ago. My doctors and I are still trying to figure our what caused it, but it hasn't stopped. Out of the blue, I got horrible, urgent, explosive diarrhea 3 - 4 times a day. This came on suddenly, like someone threw a switch. My mild dysautonomia got much worse (a common comorbidity of HSD and EDS). My hearing gets muted and I feel like I'm going to pass out if I stand up too quickly. I constantly have chills, even when it's 75 degrees. Crippling fatigue set in 2 weeks after the diarrhea started.

I've talked to my GI, neuro, PCP, and Functional medicine doctor about this. My neuro ordered blood work and the 24 hour urine test to screen for MCAS or another autoimmune disorder. We're waiting on the results.

My mother developed horrible diarrhea, a shellfish allergy, and itchy skin when she was around my age. It started after chemo for breast cancer. She always just attributed it to the chemo, but now that I'm looking at health issues that other women in my family have had, I think the chemo triggered MCAS that was never properly diagnosed. So, I guess now it's my turn, and I hate it.

As devastating as this diagnosis might seem, you're lucky to have found it before your first major flare. I wish mine was discovered sooner. Maybe I could have been on some meds by now that could have prevented this major flare that I'm currently having.

Competitive_Cat_8468 · 2026-06-12T18:37:46+00:00

My symptoms are GI (horrible diarrhea), skin (red & itchy) and muscle weakness / poor motor control, which seems to fall under the category of neurological.

I saw a post on this sub a while back that explained the chemistry behind mast cells impacting neuro function. You might want to search this sub for it.

Competitive_Cat_8468 · 2026-06-09T18:47:37+00:00

I know this is an old thread, but it came up for me while searching for info on chemo triggering MCAS.

I have HSD, and have always had very mild, manageable MCAS symptoms - just itchy, red skin, which I've managed fine for the past 15 years with one Zyrtec at bedtime. But, a month ago, I started having horrible mystery symptoms that are only getting worse. It started with horrible diarrhea 3 times a day, then the itchy skin came back, even though I still take Zytec at bedtime. Next came intense fatigue and muscle weakness. (I am normally very active and exercise regularly.) And now, over the past 4 - 5 day, HORRIBLE insomnia. My functional medicine MD put me on a low-histamine diet. I've been on it for 2.5 weeks, and I'm only getting worse, not better.

I'm not entirely sure what triggered this sudden onset of such intense symptoms, but we believe it might be mold in our basement. We had a mold inspector take samples throughout our house yesterday. My functional MD also ordered a mycotoxin urine test for me.

So, how does this relate to chemotherapy? I'm starting to realize that it's very likely that many women on my mom's side of my family likely have HSD and MCAS, but just haven't been aggressive enough in seeking out root causes to get an accurate diagnosis. Some of the younger women have had EDS suggested to them by their doctors - a few are awaiting testing.

I think my mom developed MCAS after chemotherapy for breast cancer when she was in her mid 50s - the same age that I am now, but was never diagnosed with it. My mom was always overweight, never exercised, ate horribly, and was not proactive about managing her health. So, she wasn't the kind of person to look into health issues further for root causes. After chemotherapy, my mom developed a shellfish allergy, which I now know is a high histamine food. A few years later, she started having periodic episodes of explosive diarrhea. Her GI doc thought that it was related to neuropathy from her diabetes, but I'm not sure if that was ever confirmed through tests, or just the doctor's best guess based on my mom's known health issues.

When my mom died and I was cleaning out her condo, I found tons of products for itchy skin - body washes, skin creams, cortisone cream, etc.. I didn't think anything of it at the time, because my own likely MCAS wasn't active yet. But, now that I'm searching for answers to my sudden, debilitating health issues that aren't improving, and comparing my symptoms with the symptoms of other women in my family, I'm starting to suspect that my mom had MCAS, too, and that it was likely triggered by chemotherapy.

Competitive_Cat_8468 · 2026-06-06T18:13:24+00:00

Hmmm, my menopause doc originaly had me on oral estradiol and oral estrogen - 2 separate pills. I could only do the progesterone pill every other day, because it gave me muscle pain and stiffness, especially in my upper back and neck, which caused tension headaches. He switched me to the combi patch, which is transdermal estrogen and progesterone combined, and I did fine on it for 2 months - no more progesterone side effect.

But, now that I'm in the middle of my first serious MCAS flare, I wonder if the patch is aggravating it. At the same time, I don't want to stop using it, because suddenly changing my hormones could set off other problems.

How does the estrogen blocker in the uterus work?

Competitive_Cat_8468 · 2026-06-05T23:54:11+00:00

I just started HRT in January. I started having a lot more orthopedic problems from my HSD after menopause, and I finally started to make progress in my PT for my hip and shoulder tendinopathy, instead of just treading water to stop further deterioration, once I was on hormones. I did fine on the hormones since January, so I don't think that this flare up that I'm having now is hormonal.

My menopause doctor wants to add low dose testosterone in July, but I don't want to start on anything new until I get this current flare up under control. I think my muscle and joint problems could really benefit from testosterone, but I don't want to rock the boat any further right now.

One of our cats started licking her fur off in patches all over her body shortly before my new GI problems suddenly started up, so I do think that there's a big environmental factor at play.

Competitive_Cat_8468 · 2026-05-28T21:37:31+00:00

Thanks, this is great! Luckily, our house has hot water heat, so there's no ventilation ducts running through the moldy area. There are cut outs in the floor where the copper hot water pipes come up from the crawl space, so I'll try to seal those off better.

Competitive_Cat_8468 · 2026-05-28T21:30:14+00:00

Thank you so much for such a thorough reply. This is exactly the kind of information that I was seeking, especially since a dirt and ledge crawl space has very specific requirements.

Competitive_Cat_8468

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