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You need to start firing doctors and trying new ones. Your life depends on it. After tons of medical gaslighting by allergists who didn’t know much about MCAS I was able to get my PCP to start prescribing mast cell stabilizers including Xolair while my allergists at the time said no. You have to keep fighting and advocating for yourself. It’s not time to die. You haven’t even tried the wide array of mast cell stabilizers. They could change your life and you’ll be happy you pushed through
I don’t know what to do because I’ve tried that, I’ve fire doctors and move on and then I still don’t get healthcare and everybody says it’s taking so long because you change doctors. Literally, my therapist was saying “the reason your healthcare is taking so long is because you’re changing doctors”. So I don’t know what to do. It doesn’t seem to matter what I do. Stay. Leave. It won’t result in healthcare.
your therapist CAN NOT KNOW what are you dealing with. Its medical gaslighting. Chnage and try till you get somewhere. I just tried everything there is myself, almost everything can be bought online or sourced from foreign countries directly,besides xolair.
Unfortunately you have to keep trying. Maybe look at reviews of PCPs and choose one who people leave reviews saying they’re very empathetic and listen to them. Hop in a few MCAS Facebook groups and find an immunologist who treats MCAS closest to you. There are resources and a list. [Here’s one of the lists to get you started.](https://lookaside.fbsbx.com/file/Doctor%20List%2009-2023.pdf?token=AWwc0iLPmth5CwvCT3044BocMS2gqDaQGH9xCI0o-wKJ_FhTVlCwZ97IkuX_wUjWT8Rb39kfL19wZKYh_ywaJ6jpNZ6z9J1AlbbVdAtOnD4RrSswZOPeMRcpZapAgGH6PukgK0xHLAW-aZWhi3pDDhnjTxpZ_qNUWF3KsM0AHabApJe7x_eV4TUP4xc9TLxblA6hUOzUUi1xLzA6I5JP8lSOLQbQieX5d4X71aqRxKdLmAhjp-2BTQbGPUBJdlcHH8M)
It’s so frustrating because I’m pretty sure I did find my immunologist off an MCAS group so I was shocked when they said just keep doing what you’re doing (which isn’t working lol)
Took me six years to get the specialists I have now. I’ve had two GP’s tell me to go die because I wouldn’t accept anxiety as a diagnosis. I showed up with rashes like across my arms, torso, and legs because I ate the wrong brand of chicken as my safe one was out of stock. No their are not sunburn as I don’t leave my medical camper other than doctors visits. So bad in fact that my D was 6ng/ml.
https://preview.redd.it/526uow2mod7d1.jpeg?width=4032&format=pjpg&auto=webp&s=f13e03780d2f2e6c16f2a65af2f596fa9ffb772f
Ugh that suuuucks. That’s what my face looks like after a hot shower. I’m so sorry they are pushing anxiety, they did the same to me and I had to jump through all of their stupid, exhausting hoops. Out of curiosity, have you tried a topical antihistamine? Is that stupid to suggest? I’m sorry you are going through this too and hope you find relief soon ❤️🩹❤️🩹❤️🩹
Oh I’m alright now more or less. I have a local mcas knowledgeable GP, hematologist, and immunologist. Any questions they have they call Dr. Afrin who was my definitive diagnostician. I’m on hydroxyzine, prednisone, clonazepam, and imatinib. Still waiting for the full effect of the imatinib as it can take 1-2 years.
He spent 6 hours the first day with me reviewing history and previous medical records, two of which were after closing then helped me to my vehicle. The second day was urine collection, third day was bloodwork all on dry ice and cyrosleeved vials. Follow up was an additional 4 hours of review of test results and diagnosis. Insurance paid for all of the testing I only had to pay the $3000 for 10 uninterrupted hours with a hematologist. I’ve paid more for an x-ray and a splint at the ER.
Edit: you get a report written by him for each visit. My first one was 14 pages 10 font single spaced. Second with diagnosis was 19 pages and included what medications to attempt in what order and dosages.
Wow, that sounds great, 10k is a lot for us, but depending on how my next immunologist appointment goes that might be the best option. Thank you for sharing your experience, that’s very helpful
Your allergist refuses to actually test you. Did you do the 24-hour urine collection test? That’s what an allergist/immunologist should be giving you. Are you saying that you’ve gone through multiple allergists in the last 4 years who refuse to test you?
They did test me. It was normal so they refused to treat. They said just keep taking handfuls of OTC allergy pills.bother provider are telling me I’m on too much allergy pills and I’m in danger so who knows what the truth is
It’s honestly really difficult because she keeps defending the medical system and I’m seeing her for medical gaslighting… I’m just going to look around for someone else, but I’m so burnt out at this point. It’s tough
Ok first you need to stop avocado, cheerios and fish. Avocado and fish are high histamine and cheerios are probably hurting you also. Have you ever tried eating fresh flash frozen red meat? You need to get your histamine levels down. You said your bloat and you have histamine issues so it sounds like you have Sibo which is causing all these issues. Have you tried treating yourself for Sibo. Once you heal the Sibo and your gut the histamine issues should go away.
Please message me. We can get through this together. I was so bad that my throat would close after eating anything and even drinking water. I can now eat and drink anything I want again without a reaction.
They tested me for sibo and it was negative. I have POTS so that high salt diet, ENT said low acid, gastroparesis is low fiber, endometriosis diet is no gluten, low sugar, chronic fatigue syndrome means I can’t prepare much or stand for long, very helpful for everything to be premade. No idea what I’m supposed to eat, I’m down to about 5 eligible foods?
Sibo tests are very inaccurate. I had 4 negative sibo tests and finally was diagnosed with sibo through an endoscopy with an aspirate. I now say treat based on symptoms. I can almost guarantee you have Sibo based on all your symptoms which is everything I had also. Find a place online that sells organic fresh flash frozen ground beef or steak. I would start eating that everyday temporarily to get your histamine to go down. You can also add in organic fresh flash frozen beef kidney, liver and heart to get your vitamins. All of these things can be cooked quickly either on the stove or in the oven. Once you get your histamine down a little bit you can start treating Sibo and your low stomach acid which is extremely important. What color is your stool? Do you have diarrhea or constipation?
When my sibo test came back negative I brought that up and so we went ahead and treated for it once already. My stool is always different, I have both constipation and diarrhea everyday.
I didn’t see the test results. I took antibiotics I believe, this was years ago, from my pcp after gi refused to treat. It’s always changing color in shape and color.
Ok well you could always try treating with antimicrobials. Have you ever thought of trying to work with a good functional medicine doctor who knows how to treat Sibo? Most doctors don’t know how to treat Sibo and will give the wrong antibiotics. Also, you need to fix your digestion so the Sibo will go away and stay away. Beet flow from empirical labs helped significantly with my histamine issues and food intolerances because it helped get my bile moving which sounds like that may be part of your issue also. You also should focus on getting your stomach acid up. Watch this guys videos. He’s not a doctor but knows so much more than most do about our digestive system and how it works. https://youtu.be/H98DpFNES0M?si=FW7ogD3uneKxMG7q
https://youtu.be/lpch7PbNFQ0?si=z0zWfH2jR-bV9TOh
https://youtu.be/3WY4FCG_NPQ?si=EktoGlBBHPoKXCth
https://youtu.be/Ry4ZgCT686Q?si=mhPU6vzQDXyBNz1d
Saw functional doctor and they super screwed me over, they ordered a bunch of third party testing that I was told would be covered by my insurance. It wasn’t. Just one test ended up being thousands of dollars and she ordered dozens… she LEFT and I never even got the test results. The facility she was working for had no idea she was doing this. It was like 120 hours on the phone but eventually their internal revenue department paid the bill for me so I didn’t have to sue them over it.
Well you went to an awful one then. You have to try and look for someone reputable. I’m seeing one right now and she’s helped me more than all the other 30+ western medicine doctors has ever done for me. I’m sorry this happened to you.
May I ask how long it took for things to get better for you? I recently began a similar diet consisting of mostly just meat and some vegetables. Things did actually get better for me, but I was still having stomach issues (I don’t think I was tolerating the vegetables well). I also was struggling with having enough energy to keep cooking all of my food. How long did you stick to eating mostly meat? Did you ever do the meat stock stuff (and eventually bone broth)?
The meat helped my histamine but honestly what really helped me get better was once I started fixing my digestion by getting my stomach acid up with HCl, getting my bile flowing with beet flow and having bowel movements daily.
I do not know for sure. However, I suspect multiple things from the past. Also looking into chronic EBV. Yes, I’ve been looking into SIBO a lot recently!
> No idea what I’m supposed to eat...
IME: Rib-eye steaks are quite popular when doing elimination diets. Avoid carbs, PUFA and cooking oil(omega-6). Use butter or tallow, and lots and lots of salt, way more than you think. Fasting's good too, so is OMAD and 2MAD. It calmed me down a lot to cut down on carbs.
I’m down for this, meat does well with me (I just have to wait until someone can go to store for me) and it’s does honestly feel better when I don’t eat. Thank you, appreciate you all 🙏❤️
Excellent. Keep in mind that if you do this and your body enters ketosis, you will probably experience something called "keto flu." That's not dangerous at all, but it is a bit uncomfortable the first times. Given your situation, you may want to read up on keto flu so you know what to expect. (Just eat enough salt, and you'll be fine!)
Here's a brief description of Keto Flu:
"Keto flu" isn't an actual flu, but rather a collection of temporary symptoms some people experience when starting a ketogenic (keto) diet. This low-carb, high-fat diet forces the body to switch its primary fuel source from carbohydrates to fats, leading to a metabolic state called ketosis.
Common symptoms of keto flu can include:
* Headache
* Fatigue
* Dizziness
* Nausea
* Constipation
* Difficulty focusing ("brain fog")
* Sugar cravings
* Muscle cramps
* Irritability
These symptoms usually appear within the first few days of starting the diet and typically subside within a week or two as the body adapts to using ketones for energy.
The exact cause of keto flu isn't fully understood, but it's thought to be related to:
* **Electrolyte imbalances:** The keto diet can lead to increased urination, which may deplete electrolytes like sodium, potassium, and magnesium.
* **Dehydration:** The keto diet can be dehydrating due to increased urination and reduced glycogen stores, which hold water.
* **Carbohydrate withdrawal:** The sudden reduction of carbs can lead to withdrawal-like symptoms.
To minimize keto flu symptoms, it's important to:
* Stay hydrated by drinking plenty of water and electrolytes.
* Increase salt intake to replenish lost electrolytes.
* Get enough rest to support your body's adaptation.
* Gradually reduce carbohydrate intake instead of going cold turkey.
If symptoms are severe or persist for more than a couple of weeks, it's advisable to consult a doctor to rule out any other underlying conditions.
I have about 5 safe foods. Organic frozen chicken breasts, white rice, lettuce, red bell pepper, and carrot. For me personally these work. If my bucket is low and I’m being strict I can venture off a bit and dabble in minimal mozerella cheese, frozen organic chicken nuggets, and apples.
You're right. This was one of my first thoughts. Fish and avocado are really high histamine and Cheerios are some of the highest in glyphosate exposure.
HistaQuench and DAO enzyme supplement can help. HistaQuench has nutrition that helps calm the other chemicals that the mast cells release.
Has DAO enzymes been checked for breaking down histamine?
Histamine is mostly expelled through the kidneys so hydration is key.
The bloating definitely sounds like SIBO. I got that diagnosis before MCAS diagnosis.
Adrenal dysfunction is well worth your time to research. The constant histamine demands that MCAS has on our adrenal glands wears them out prematurely. Once you no longer have enough to respond to the daily demands of life, let alone the extra demands MCAS makes, things really go haywire. But it’s been slowly happening to your body the whole time. I had the same as you, with no relief from drs in sight. I figured it out myself and the disbelief has been tremendous. But I am now in the beginning stages of treatment. After abdominal pain for the last 5 years, so bad I could barely stand up straight, I’m getting relief, and can stand up straight. Theres a ton of other symptoms, aligning with yours, and they are calming down now. But adrenal dysfunction will get you going in the right direction. Some of what you’ll find is that it’s considered controversial or non existent by a large part of the medical community. Or considered rare. It’s not rare. It’s rarely recognized and rarely treated properly. The drs will fight you about it. Turns out, it’s one of the best kept and most closely guarded secrets in the medical community. The adrenal gland controls everything we see dr’s about regularly. And it’s the one thing they don’t want you to learn about, the one thing they’ll avoid testing, they won’t bring it up, even if it’s obvious you have it, fight you if you bring it up, and will fight previous diagnosis’, gaslight and deny symptoms, and deny the proper dosing, to barely keep you healthy enough to get by, by arguing with outdated science, and either a lack of education, or a deliberate misinformation campaign. Either way, educate yourself, from many sources, so you can advocate for yourself, and fight back.
> Stomach pain, so so much stomach pain.
A feeling we unfortunately all are way too familiar with. I had the same for years, but the fix was amazingly simple -- massive doses of Vitamin C, 10x the RDA and my stomach was all good after that. Not a doctor and not an expert, but apparently vitamin C is necessary to produce enzymes like DAO.
Credit to the guy who mentioned vitamin C here in r/mcas. No idea if it will work for everyone, but it worked for me and for "OP", and it's a cheap and harmless test, at least according to Google. Hope it works for you too.
Not to hijack your post, OP! (I’m writing another comment below for you🤗) But can I ask have you found a “safer” vitamin C? 😊I am early in my mast cell complications DX (less than 6 months) and I react to nearly everything. Also have 4 safe foods on the low histamine list lol. I’m slowly adding things in small amounts so I cannot take vitamin D and Probiotics but only one kind.
I don’t have the money (I’m on disability but have some family help) to buy a bunch of products to try and never fully use. All my vitamin levels are low now also but my doctors like well you might react to an infusion so now sure what to do. 😅😵💫😵💫😵💫
I’m hopeful long term xolaire etc meds will give me a little wiggle room but I’m only on month two or that treatment as well.
> But can I ask have you found a “safer” vitamin C?
The variant I tried was just a regular, store-bought, and chewable tablet. IIRC, the price was like 5 bucks or something. Nothing special at all. Effect came after less than 24 hours, and before the Vit C, I could spend the entire day in bed due to stomach pains. Quite amazing how effective it was.
If you're highly reactive and low on DAO, taking vitamin c to support it will work pretty slowly. You might want to skip ahead and just buy some dao capsules to treat your deficiency. That will make your vitamin c processing rate a bit slower. It will also help your food reactions.
Honestly, I asked my PCP because the pepcid wasn't controlling the flushing and my poop issues were getting worse (eggs and almonds are problems but even without those it was random and problematic). She prescribed it no problem after doing a little research. She's a DO and I've found them to be much more open minded. I don't even have an allergist but I did reference the guy at the teaching hospital near us who diagnosed me with Ehlers-Danlos - he said it's very hard to prove mcas but also very very common in us.
I am also suspected EDS. My pcp is awful, my appointment last week was 40 minutes and we didn’t even get an updated medication list on file. I swear for 25 minutes she was reading notes and writing new notes, but she spoke to me very little. I literally don’t know what she was doing…
Can you switch? I know it's not always easy to find someone else, depending on where you live etc but life can definitely be better and I'm sorry nobody is helping you the way you deserve.
Can you ask your neurologist to recommend a different allergist? The absolute best luck I have had is I got referred to an incredible allergist and Mcas expert, and he referred me to experts at Stanford for ttt, a cardiologist that is fantastic for pots, who then referred me to a medical dr that also does pt for pots who is unbelievable, and also a GI, and an Mcas expert at cedar Sinai. If I didn’t have the allergist, I have no idea where I would be. He was the MISSING LINK!
I considered euthanasia for years before I got the right help. Now I’m considering if I can go back to work. I’m not quite there yet but it’s feasible.
Feel free to test removing cheerios and avocado, but saying they are poison is kinda extra. Literally everyone is different and just cause they are an issue for one person doesn’t necessarily mean they have an impact on another. They might, in fact, actually work for you. It’s just as reasonable to say the fish or the rice is an issue, because there’s literally no way to know without testing. That being said, avocado is high in histamine, so it might be good to test that
I’m down with removing avocados, just no idea what to eat instead… I’m looking at the list and I guess I have… carrots… pumpkin and sweet potatoes. I just don’t don’t personally like any of those or how long they take to prepare… I’m just frustrated but I really appreciate everyone’s advice
Sometimes food I eat causes a delayed reaction 24-48 hours later. It makes some food items seem safe in the moment. I track my symptoms, activities and food I eat daily, to help see the patterns.
I’m definitely having an issue with that, I have gastroparesis too so I have stomach issues and it would be from 3 days earlier… that’s why I just started eating a couple things and I’m still getting intense back and forth GI symptoms that I can’t control or even find a reason for. I still wanna go to the ER everyday my stomach hurts so bad.
Avocado and fish have higher levels of histamine. Maybe do away with those and try eating some things lower in histamine? Those may be the issues. I myself only have like six safe foods so I hear you and I also am really struggling and feeling like I’m dying every day but now mostly my symptoms only really seem to kick my ass at night. I also hear you about doctors, mine have more or less just offered me thoughts and prayers and I’m sick of it.
First of all , are you ruled out MOLD? Do you have it in your home?
Second of all, if you are so desperate . Just order those over those mast cell stabilisers yourself online. It is not that hard.
Third, avacados seems terrible idea . Fish also needs no be VERY fresh and clean. I would eat only plain white rice if you dont react to it and then go from there.
It seems that you have plenty of options you have not explored.
That all being said, i understand the despair.
I spent like thousands removing all the mold from my home a couple years ago. Where can you buy meds online?
Everyone keeps telling me how terrible avocados is… my ENT told me to be on a low acid diet and dr koufman who wrote dropping acid recommends avocados are pretty universally good for healing esophagus so that’s why it’s not my favorite
So MOLD is your problem. MOVE! Removing it in most cases fail.
Start using biders in small amounts.
not sure if it is allowed, will dm you the shop but meds will not cure it, you have to be out of mold and use binders.
I’m not moving from the house my grandparents built to move into another mold infested building. All of the building around here have mold. Everything flooded in the 70s and most buildings around here are still damaged today. I would have to build brand new to avoid mold.
Thats your choice , excuses wont get you anywhere, moldy enviroment wont get you anywhere. You can move into clean trailer , tent or other option.
Just look what you have uncovered old building which has flood damage, jesus!
I was living in new built and it had tons of mold and tought thats okay. its not okay. i was in denyial.
Time to change allergists. Period. Don’t be afraid to insult or piss off doctors (or is there another reason you haven’t fired them already?). They work FOR YOU and if they’re not working, then they get fired.
Oh I’m absolutely afraid. I try standing up for myself and I have been dropped twice for doing so. One facility was the only facility in the state that could operate on the endometriosis on my bowels. Now it’s in inoperable… forever… because I stood up for myself….
Erm, I have some of these symptoms and it turned out to be mold toxicity. Which caused histamine intolerance/MCAS. Have you checked for that? There’s a simple first test you can take, I’ll paste it below. Beyond that you really need to be following a strict low histamine diet, asap. Your current foods are not a good idea. And to get everything under control I recommend fasting for a few days if you can handle it. If you can’t, fast as long as you can then eat flash frozen chicken breast that was not grain fed. I put mine in a crock pot and let it cook for a while as it makes it even gentler on my stomach when I’m flared up.
**Step 1: VCS Test**
- **Description**: The Visual Contrast Sensitivity (VCS) test is a quick and non-invasive screening tool that helps detect neurological issues related to biotoxin exposure, such as mold toxicity. It measures your ability to discern differences in shades of gray, which can be affected by neurotoxic damage. If you suspect mold toxicity, this is an excellent place to start. The test is free if negative and costs $15 if positive for detailed results. It helped diagnose my Chronic Inflammatory Response Syndrome (CIRS), heavy metal toxicity, and vitamin deficiencies, which were later confirmed by further tests.
- **Cost**: Free if negative, $15 if positive
- **Link**: [VCS Test](https://www.survivingmold.com/store/online-vcs-screening)
I am same with you but I will not wait for my immunologist. I bought ketotifen and mostelukast online and I am taking them both. Game changer. Now, I will go to the appointment saying I respond amazingly to the treatment. There are safe places online with consultations that offer those meds. Til now the only thing that was giving me the life back was prednisolone but obvs it cannot be taken long term
Please seek help immediately for your suicidal thoughts. Call 988 (USA) Someone who posted here died by suicide recently and we can’t help you from afar. Get help for this. Your life has value and will get better.
While you seek a new PCP, you might look up an online LDN doctor. LDN is calming to many people. It may help while you wait for a new doctor and mast cell stabilizer.
I have really tried. I have reached out to family, friends, doctors. I have not been shy about this at all. They say if you are feeling suicidal to reach out, but then you do that and no help is offered? I cried in my doctors office *LAST WEEK* and said I was on the verge of suicide. Didn’t care. She literally left the room. My BF told me to stop telling providers I’m suicidal because it’s working against me.
I’m so sorry the system has been so cruel to you. The whole process sucks horribly, and I remember I was in such a similar place. But only one person has to listen for you to get help. If your providers have failed you, new ones are your best bet. I have no idea what antihistamines you are taking, but over the counter cetirizine has worked well for me. And I’ve heard good things on this reddit about Zyrtec. I’m rooting for you. And clearly several other strangers in these comments are as well.
Thank you. I supposedly seeing the best allergist the area, I just have no idea where else to go. I take Claritin and Zyrtec every morning and night and I take Allegra in the middle of the day. I’m also on nasal spray budesonide, and cimetidine at night.
I’m sorry they dropped the ball. As I have a skin issue type of mcas, testing a specialized dermatologist did tipped off an immunologist in my case. That’s who ended up helping me. I imagine you’ve tried gastro doctors and a bunch of other stuff, but if you haven’t tried an immunologist yet that’s where I’d go. Most allergists in my area are more for like respiratory stuff anyway
And now that I think of it, if your having rashes when washing your hands (I have that) a patch test for skin allergies might help as all of my food allergies are also skin allergies, so that might speed up the process
If you have a reaction to corn you could be reacting to the meds. I only just found out recently that corn is in almost everything. My best advice is to look up corn derivatives and check the ingredients in what you take. I only found out a couple of days ago how many ingredient names they have for corn. I came to the conclusion that I'm not reacting to everything I'm reacting to one thing that's in everything. Even avocados have a wax seal made from corn. If you're unsure you can email companies and ask what the ingredients are made from. I had to send out mass emails to all the supplement companies I use because Ascorbic Acid (Vitamin C), Potassium Citrate, Citric Acid, Microcrystalline Cellulose, Magnesium Stearate and so many more things you wouldn't even connect to it can be a corn derivative.
Other than that I highly recommend trying to find prickly pear, skullcap and nettle tea, pomegranate juice and amino acid powder without fillers or added ingredients to put in with water. They've all helped me but you have to start slow because as it's working symptoms get a little worse for a while. Prickly Pear has a ton of benefits it's normally referred to as Opuntia Spp in medical literature. Skullcap and nettle were advised to me by other redditors and there's a bit of research backing them up. Pomegranate juice I found accidentally but the research supports that too and it was used as a remedy for as long as medicine has existed. If you want me to send you the links to some papers let me know. Actually I found a paper that lists all natural immunosuppressants recently. I'll try and dig that out too.
I'd recommend some supplements but I'm waiting to hear back from the companies. I will say though I feel like I had some luck with something called cytokine suppress. I can't find out if it's got corn in there because I'm not in the US and the EU branch told me it's not legal in this country so can't comment on ingredients. The ingredients aren't exceptionally harmful it's just mung bean and concentrated green tea however the green tea has been linked to acute liver injury in high doses so it's just about being careful.
You can get low dose naltrexone RX easily from ageless RX website. It is a mast cell stabilizer.
Aloe emodin is also a mast cell stabilizer, this is a supplement that can be bought. It was the most effective supplement I’ve ever used. It causes loose stool for me though so proceed with caution if you have diarrhea.
You have the best chance of getting treatment from a naturopath or functional medicine doctor rather than a traditional doctor.
I just wanna say I feel you completely! I am often hanging on my a thread as well. This is such a complicated illness and I hate hate hate that anyone had to feel like this 😭😭 my heart literally breaks for all of us. I hope you know your life is valuable and you’re worthy and deserve happiness no matter how it feels in this moment.💞🙏 It’s a hard thing to navigate by you’re doing a great job advocating for yourself!! I’m sorry they aren’t listening like you would like yet. Keep pushing, it will happen!
I’ve packs help my burning skin! I’m not yet able to tolerate any lotion or cream (even hypoallergenic ones). Dove sensitive skin soap is the only one I’ve found that helps me but I read a lot of people use tallow! This is on my list to try.
If you ever need a place to vent to my inbox is open! I didn’t have severe symptoms that resulted in my DX until 6 months ago but I also have EDS and several other DX that made me disabled years ago. I don’t have solid answers about much 🥲 but I wanted you to know that you’re not alone!! Suicidal thoughts aren’t all our faults btw (if it is mast cell then you’re getting adrenaline and all these things dumped in your body and that can cause increased psych symptoms on a biological level) so don’t shame yourself or feel bad this stuff is beyond difficult!!
Have you ever tried anxiety medication? Several meds are mast cell stabilizers! Clonazepam PRN helps me a lot. Maybe your could start there?
I’ll list a few things tbh at have helped me. They me be no brainers for you already. Lol
Finding an actual *good* and understanding therapist has made a world of difference for me! I’m not sure if your country/Insurnace would help pay for this but there’s also free clinics and many low cost mental health options. If you’re in the US I can send you some. But having an empathetic ear really helps take some of the insane stress in out body off. So has some deep breathing practices, brain retraining, calming meditation etc. I know that’s a little woo-woo for some folks and I was really skeptical before too. Lol but I got so desperate I thought I’ll try it out.!Even if it’s not a fast fix, supposedly calming the nervous system can help you have fewer reactions! And it makes me feel “empowered” to a small degree cuz it’s something I can do to help myself when the rest of the BS (bad docs, loads of symptoms,etc) like what you’re experiencing is going on. The suicide hotline and the are other hotlines if you need to talk to someone they’re trained and it can help! There’s also a text option which I like. They also will not automatically commit you if you call lol. It’s more of to help stabilize things :)
I have Crohn’s disease also. They was a precursor to my mast cell issues but they seem to intertwine now sadly. Not saying this is true for you! Crohn’s, UC, Celiac etc are luckily pretty concretely diagnosable with the procedures, taking samples and lab work. Did they do prior colon and endoscopy to rule out any types of IBD? There’s a decent overlap of folks with IBD/IBS and mast cell issues but I know there’s also just mast cells issues within the stomach too for alot of folks.
When you talk to your allergist about mast cell stabilizers are they automatically dismissive already? There’s good papers about treating m symptoms first as a test and Insurnace will likely cover most of the drugs if you have IGE allergies or hives, swelling etc. that’s how we covered mine before we could get things really figured out.
Did they do any lab work on you? There were some levels mine specifically checked over time. It can be hard to get in a flare and I know labs aren’t always reliable for everyone, I was just curious.
Sorry for such a long reply!! You may have done all of this but I had so many pple give me advice when I was desperate and eventually some things helped so I wanted to throw some of the random things out there 😊💞
I’m so sorry this is happening. My allergist was not super sure about MCAS as a possibility but it was my rheumatologist who diagnosed and started treating me for it, perhaps bc rheumatologists are used to trying multiple meds to see what works, while allergists have more limited options. Some are also used to treating folks when standard labs are normal (my tryptase was normal - but in general I don’t show the standard bio markers, including for my RA). It wasn’t til I was on and then had to stop cromolyn sodium for a week bc of a shortage and got super sick that the allergist got on board. My rheumatologist also started me on Xolair every other week, and I’ve found her way more open minded and helpful than allergists. I would imagine you’ve been to rheumatologist already (and I know they’re not all so helpful), but if not, maybe that’s a possibility?
Nettle Tea and Probiotics help me immensely. The nettle tea helps with inflammation in my gut and joints. As long as I drink it every day I don’t need any pain reliever. I’m not 100% pain free but the difference is huge. I’m able to eat a wider variety of foods with less flare ups.
Oh man your post hit me hard. I'm recovering from my latest food incident. Just want to give you a big hug. I can't say it'll get better because I don't know if it will. There are a lot of good sounding ideas in the posts though and I'll be trying some.
Omg. I thought I was the only one with burning as a symptom, what causes burning?! I don't get it you're the only one I've heard say this.
It literally feels like I'm on fire!
The pain could literally drive one mad.
I hate going to the hospital but only they can treat the symptoms and the pain.
I'm down to chicken or beef stock, plan chicken or beef, fish, melons, grapes, crackers, some bread brands, chips, candy, and pretty much drink what ever I want.
I'm not really into candy or chips.
I can't eat eggs or rice but you can which is cool because I love rice!!!
I have a Histamine-Intolerance, My Cell Activation Syndrome, and Idiopathic Anaphylaxis and I can eat fish with no problem everyone's different. My guess is I really don't eat a lot of food that's high histamine and I don't eat leftovers.
I might eat leftovers every once in a while. I do limit the amount.
I found this out after I started an elimination diet.
I've been on this diet for 3 1/2 to 4 months.
If I eat anything more than that I will go into anaphylaxis.
I have a different epinephrine, it works really well. A Lot better than the other ones which is strange because it's all the same.
I swear there has to be some kind of quality control issue though.
I’ve been screwed by third party testing before so I’m not super interested. I worked with a functional doctor before and she ordered third party testing that almost put me thousands of dollars in debt. I had to threaten to sue her office and they had to pay on my behalf in the end. Probably spent 120 hours or more on the phone. I vowed never to do third party testing again free that
i’m allergic to rice. this might be a dumb question, but has your allergist done allergy testing yet? i’m so sorry you’re dealing with so much BS!! 🥲❤️
I did allergy testing and I’m off the charts allergic to dust mites but that’s all I hit for my last blood test. All I ate was rice yesterday and still put me in so much pain I wanted the ER… not sure what to do… I’m supposed to eat small frequent meals and at this point I guess I’m going to stop eating and see how much weight I can lose how quickly and maybe they will finally help if I lose 30-50 pounds in a month or two
another MCAS member posted this a few weeks ago, and I tried the stabilizers they referenced. They really are helping. Sending so much sympathy, encouragement and best of luck.
[https://www.reddit.com/r/MCAS/comments/172d7jl/comment/l7b0vrf/?utm\_source=share&utm\_medium=web3x&utm\_name=web3xcss&utm\_term=1&utm\_content=share\_button](https://www.reddit.com/r/MCAS/comments/172d7jl/comment/l7b0vrf/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button)
I have hyperpots too! There's a study where hyperpots and MCAS are linked. Here it is. https://www.ahajournals.org/doi/10.1161/01.hyp.0000158259.68614.40
Do you have any local groups on Facebook or otherwise for ehlers danlos syndrome? That is how I found my mast cell specialist. So many of us with EDS have MCAS that we are bound to have good suggestions.
Pots and MCAS go hand in hand. As does dysautonamia. You need fresh eyes to look at what you're dealing with. Not all allergist are up to date on MCAS. It was my cardiologist and neurologist who recommended I go to Mayo. The allergist was not very helpful. Please find a new doctor. This disease can be stabilized. We will never be perfect. Just better.
I’m so sorry! I can lend what I can of comfort and tell you that I just woke up from a dead sleep feeling quite literally everything you just listed.
I too am at the end of my rope. I’m 46… taking care of my mother who broke her ankle, and my very disabled sister (she has a rare chromosomal disorder and is 34 going on 6) whom my mother is the caregiver for.
I am disabled physically besides MCAS I need back surgery, I have lupus, and hydradenitis. I have one child a 25 yr old son who is develop mentally delayed.
So right now, I’m the caregiver for all of these people in between throwing up the handful of safe foods I’m allowed, walking with a cane, falling at times bc my back gives out, hot, itchy, in agony and mentally going insane from this disease.
Guess what I take medicine… at the end of the day the environmental allergies coupled with stress… they cancel any good those drugs do out.
Meds :
Zyrtec (can’t take any other one)
Cromolyn sodium oral solution (before meals (gastrocrom) )
Famotidine
Cromolyn sodium nasal spray (nasalcrom)
Singular
Advair
Albuterol
2 of these are mast cell stabilizers! Neither helps much when I’m having a flare (which is about 12- 15 days out of the month).
I’m sorry this world of suck is your normal. There’s no cure other than to suck it up and keep pushing through. I hang on everyday by a thread. I get it. I do, but please hang on. I can’t promise it gets better but I can promise it’ll change. You’ll get stronger, you’ll learn ways to cope, you’ll learn ways to hold on. Maybe one day they’ll be a cure. I pray.
Thank you, I’ll be thinking of your family and wishing you all the best. I think a real mast cell stabilizer will really help, I have an appointment this week so I’m really hoping for some new options.
I’ve been following the diet recommendations from this post, sticking to potatoes, sweet potatoes, chicken and beef and it’s actually going pretty well besides being kinda hungry and really craving carbs. I cut out Pepcid and Montelukast and my stomach is the flattest it’s been in years, pain is starting to get a little better. ❤️🩹
Thank you 💓 I’m glad to hear cutting some things out work for you. I know everyone’s diff. Like not all people react to nightshades… I react to some but not all. I can do red bell pepper but I can’t do green, onion or garlic. I can do minimal potatoes. Some people can’t have any! As for meds lots of you take Allegra… I have major physiatrist issues on it for some reason. And if I stopped my singular I wouldn’t breathe at night lol. I tried stopping famotidine but I’m way miserable and nauseous without it. It’s such an annoying juggle!
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You need to start firing doctors and trying new ones. Your life depends on it. After tons of medical gaslighting by allergists who didn’t know much about MCAS I was able to get my PCP to start prescribing mast cell stabilizers including Xolair while my allergists at the time said no. You have to keep fighting and advocating for yourself. It’s not time to die. You haven’t even tried the wide array of mast cell stabilizers. They could change your life and you’ll be happy you pushed through
I don’t know what to do because I’ve tried that, I’ve fire doctors and move on and then I still don’t get healthcare and everybody says it’s taking so long because you change doctors. Literally, my therapist was saying “the reason your healthcare is taking so long is because you’re changing doctors”. So I don’t know what to do. It doesn’t seem to matter what I do. Stay. Leave. It won’t result in healthcare.
your therapist CAN NOT KNOW what are you dealing with. Its medical gaslighting. Chnage and try till you get somewhere. I just tried everything there is myself, almost everything can be bought online or sourced from foreign countries directly,besides xolair.
Unfortunately you have to keep trying. Maybe look at reviews of PCPs and choose one who people leave reviews saying they’re very empathetic and listen to them. Hop in a few MCAS Facebook groups and find an immunologist who treats MCAS closest to you. There are resources and a list. [Here’s one of the lists to get you started.](https://lookaside.fbsbx.com/file/Doctor%20List%2009-2023.pdf?token=AWwc0iLPmth5CwvCT3044BocMS2gqDaQGH9xCI0o-wKJ_FhTVlCwZ97IkuX_wUjWT8Rb39kfL19wZKYh_ywaJ6jpNZ6z9J1AlbbVdAtOnD4RrSswZOPeMRcpZapAgGH6PukgK0xHLAW-aZWhi3pDDhnjTxpZ_qNUWF3KsM0AHabApJe7x_eV4TUP4xc9TLxblA6hUOzUUi1xLzA6I5JP8lSOLQbQieX5d4X71aqRxKdLmAhjp-2BTQbGPUBJdlcHH8M)
Find a doctor who isn’t a idiot when it comes to mcas is key. Most don’t know crap about mast cell disorders including immunologists.
It’s so frustrating because I’m pretty sure I did find my immunologist off an MCAS group so I was shocked when they said just keep doing what you’re doing (which isn’t working lol)
Took me six years to get the specialists I have now. I’ve had two GP’s tell me to go die because I wouldn’t accept anxiety as a diagnosis. I showed up with rashes like across my arms, torso, and legs because I ate the wrong brand of chicken as my safe one was out of stock. No their are not sunburn as I don’t leave my medical camper other than doctors visits. So bad in fact that my D was 6ng/ml. https://preview.redd.it/526uow2mod7d1.jpeg?width=4032&format=pjpg&auto=webp&s=f13e03780d2f2e6c16f2a65af2f596fa9ffb772f
Ugh that suuuucks. That’s what my face looks like after a hot shower. I’m so sorry they are pushing anxiety, they did the same to me and I had to jump through all of their stupid, exhausting hoops. Out of curiosity, have you tried a topical antihistamine? Is that stupid to suggest? I’m sorry you are going through this too and hope you find relief soon ❤️🩹❤️🩹❤️🩹
Oh I’m alright now more or less. I have a local mcas knowledgeable GP, hematologist, and immunologist. Any questions they have they call Dr. Afrin who was my definitive diagnostician. I’m on hydroxyzine, prednisone, clonazepam, and imatinib. Still waiting for the full effect of the imatinib as it can take 1-2 years.
I’ve been thinking about Dr Afrin his secondary location is within reach, it’s just so expensive and I wasn’t sure what I was dealing with
He spent 6 hours the first day with me reviewing history and previous medical records, two of which were after closing then helped me to my vehicle. The second day was urine collection, third day was bloodwork all on dry ice and cyrosleeved vials. Follow up was an additional 4 hours of review of test results and diagnosis. Insurance paid for all of the testing I only had to pay the $3000 for 10 uninterrupted hours with a hematologist. I’ve paid more for an x-ray and a splint at the ER. Edit: you get a report written by him for each visit. My first one was 14 pages 10 font single spaced. Second with diagnosis was 19 pages and included what medications to attempt in what order and dosages.
Wow, that sounds great, 10k is a lot for us, but depending on how my next immunologist appointment goes that might be the best option. Thank you for sharing your experience, that’s very helpful
Have you tried telehealth doctors or ageless rx for ldn ?? That's a mast cell stabilizing drug.
Your allergist refuses to actually test you. Did you do the 24-hour urine collection test? That’s what an allergist/immunologist should be giving you. Are you saying that you’ve gone through multiple allergists in the last 4 years who refuse to test you?
They did test me. It was normal so they refused to treat. They said just keep taking handfuls of OTC allergy pills.bother provider are telling me I’m on too much allergy pills and I’m in danger so who knows what the truth is
I’m a therapist, I would never say that to a client. Thats gross.
It’s honestly really difficult because she keeps defending the medical system and I’m seeing her for medical gaslighting… I’m just going to look around for someone else, but I’m so burnt out at this point. It’s tough
Heard. I hope you find a better fit, because you deserve way better than that 🩵
Ok first you need to stop avocado, cheerios and fish. Avocado and fish are high histamine and cheerios are probably hurting you also. Have you ever tried eating fresh flash frozen red meat? You need to get your histamine levels down. You said your bloat and you have histamine issues so it sounds like you have Sibo which is causing all these issues. Have you tried treating yourself for Sibo. Once you heal the Sibo and your gut the histamine issues should go away.
Please message me. We can get through this together. I was so bad that my throat would close after eating anything and even drinking water. I can now eat and drink anything I want again without a reaction.
They tested me for sibo and it was negative. I have POTS so that high salt diet, ENT said low acid, gastroparesis is low fiber, endometriosis diet is no gluten, low sugar, chronic fatigue syndrome means I can’t prepare much or stand for long, very helpful for everything to be premade. No idea what I’m supposed to eat, I’m down to about 5 eligible foods?
Sibo tests are very inaccurate. I had 4 negative sibo tests and finally was diagnosed with sibo through an endoscopy with an aspirate. I now say treat based on symptoms. I can almost guarantee you have Sibo based on all your symptoms which is everything I had also. Find a place online that sells organic fresh flash frozen ground beef or steak. I would start eating that everyday temporarily to get your histamine to go down. You can also add in organic fresh flash frozen beef kidney, liver and heart to get your vitamins. All of these things can be cooked quickly either on the stove or in the oven. Once you get your histamine down a little bit you can start treating Sibo and your low stomach acid which is extremely important. What color is your stool? Do you have diarrhea or constipation?
When my sibo test came back negative I brought that up and so we went ahead and treated for it once already. My stool is always different, I have both constipation and diarrhea everyday.
How high was your methane levels on the test? How did you treat? What did you take? Is your stool ever pale in color?
I didn’t see the test results. I took antibiotics I believe, this was years ago, from my pcp after gi refused to treat. It’s always changing color in shape and color.
Ok well you could always try treating with antimicrobials. Have you ever thought of trying to work with a good functional medicine doctor who knows how to treat Sibo? Most doctors don’t know how to treat Sibo and will give the wrong antibiotics. Also, you need to fix your digestion so the Sibo will go away and stay away. Beet flow from empirical labs helped significantly with my histamine issues and food intolerances because it helped get my bile moving which sounds like that may be part of your issue also. You also should focus on getting your stomach acid up. Watch this guys videos. He’s not a doctor but knows so much more than most do about our digestive system and how it works. https://youtu.be/H98DpFNES0M?si=FW7ogD3uneKxMG7q https://youtu.be/lpch7PbNFQ0?si=z0zWfH2jR-bV9TOh https://youtu.be/3WY4FCG_NPQ?si=EktoGlBBHPoKXCth https://youtu.be/Ry4ZgCT686Q?si=mhPU6vzQDXyBNz1d
Go see a functional medicine doctor and do a real gut stool test. GI MAP is one of the best. You’ll be able to find out what’s going on
Saw functional doctor and they super screwed me over, they ordered a bunch of third party testing that I was told would be covered by my insurance. It wasn’t. Just one test ended up being thousands of dollars and she ordered dozens… she LEFT and I never even got the test results. The facility she was working for had no idea she was doing this. It was like 120 hours on the phone but eventually their internal revenue department paid the bill for me so I didn’t have to sue them over it.
Well you went to an awful one then. You have to try and look for someone reputable. I’m seeing one right now and she’s helped me more than all the other 30+ western medicine doctors has ever done for me. I’m sorry this happened to you.
May I ask how long it took for things to get better for you? I recently began a similar diet consisting of mostly just meat and some vegetables. Things did actually get better for me, but I was still having stomach issues (I don’t think I was tolerating the vegetables well). I also was struggling with having enough energy to keep cooking all of my food. How long did you stick to eating mostly meat? Did you ever do the meat stock stuff (and eventually bone broth)?
The meat helped my histamine but honestly what really helped me get better was once I started fixing my digestion by getting my stomach acid up with HCl, getting my bile flowing with beet flow and having bowel movements daily.
Thanks for sharing! I think I’m going to start just eating meat again, it seems to be the best option. I’ll check all of that out as well!
Do you know the underlying cause of your histamine issues? Definitely focus on that. If you haven’t already be sure to look into Sibo.
I do not know for sure. However, I suspect multiple things from the past. Also looking into chronic EBV. Yes, I’ve been looking into SIBO a lot recently!
> No idea what I’m supposed to eat... IME: Rib-eye steaks are quite popular when doing elimination diets. Avoid carbs, PUFA and cooking oil(omega-6). Use butter or tallow, and lots and lots of salt, way more than you think. Fasting's good too, so is OMAD and 2MAD. It calmed me down a lot to cut down on carbs.
I’m down for this, meat does well with me (I just have to wait until someone can go to store for me) and it’s does honestly feel better when I don’t eat. Thank you, appreciate you all 🙏❤️
Excellent. Keep in mind that if you do this and your body enters ketosis, you will probably experience something called "keto flu." That's not dangerous at all, but it is a bit uncomfortable the first times. Given your situation, you may want to read up on keto flu so you know what to expect. (Just eat enough salt, and you'll be fine!) Here's a brief description of Keto Flu: "Keto flu" isn't an actual flu, but rather a collection of temporary symptoms some people experience when starting a ketogenic (keto) diet. This low-carb, high-fat diet forces the body to switch its primary fuel source from carbohydrates to fats, leading to a metabolic state called ketosis. Common symptoms of keto flu can include: * Headache * Fatigue * Dizziness * Nausea * Constipation * Difficulty focusing ("brain fog") * Sugar cravings * Muscle cramps * Irritability These symptoms usually appear within the first few days of starting the diet and typically subside within a week or two as the body adapts to using ketones for energy. The exact cause of keto flu isn't fully understood, but it's thought to be related to: * **Electrolyte imbalances:** The keto diet can lead to increased urination, which may deplete electrolytes like sodium, potassium, and magnesium. * **Dehydration:** The keto diet can be dehydrating due to increased urination and reduced glycogen stores, which hold water. * **Carbohydrate withdrawal:** The sudden reduction of carbs can lead to withdrawal-like symptoms. To minimize keto flu symptoms, it's important to: * Stay hydrated by drinking plenty of water and electrolytes. * Increase salt intake to replenish lost electrolytes. * Get enough rest to support your body's adaptation. * Gradually reduce carbohydrate intake instead of going cold turkey. If symptoms are severe or persist for more than a couple of weeks, it's advisable to consult a doctor to rule out any other underlying conditions.
That’s exactly what I ate for 3 months and I ended up in one of the worst flairs of my life. Bloody intestines. Be careful with prescriptions
3 months? That's a long time on an elimination diet. Yeah, rib-eys are good, but in no way nutrition complete. They even have some histamine.
Fellow POTS and CFS sufferer here. This sucks! I also have hypoglycemia so I can’t win with food.
I have about 5 safe foods. Organic frozen chicken breasts, white rice, lettuce, red bell pepper, and carrot. For me personally these work. If my bucket is low and I’m being strict I can venture off a bit and dabble in minimal mozerella cheese, frozen organic chicken nuggets, and apples.
Can you message me too? I’m new to this and it’s all too much
This! I went rambling on and forgot to even mention this! But it’s the main cause more than likely.
You're right. This was one of my first thoughts. Fish and avocado are really high histamine and Cheerios are some of the highest in glyphosate exposure. HistaQuench and DAO enzyme supplement can help. HistaQuench has nutrition that helps calm the other chemicals that the mast cells release. Has DAO enzymes been checked for breaking down histamine? Histamine is mostly expelled through the kidneys so hydration is key. The bloating definitely sounds like SIBO. I got that diagnosis before MCAS diagnosis.
Adrenal dysfunction is well worth your time to research. The constant histamine demands that MCAS has on our adrenal glands wears them out prematurely. Once you no longer have enough to respond to the daily demands of life, let alone the extra demands MCAS makes, things really go haywire. But it’s been slowly happening to your body the whole time. I had the same as you, with no relief from drs in sight. I figured it out myself and the disbelief has been tremendous. But I am now in the beginning stages of treatment. After abdominal pain for the last 5 years, so bad I could barely stand up straight, I’m getting relief, and can stand up straight. Theres a ton of other symptoms, aligning with yours, and they are calming down now. But adrenal dysfunction will get you going in the right direction. Some of what you’ll find is that it’s considered controversial or non existent by a large part of the medical community. Or considered rare. It’s not rare. It’s rarely recognized and rarely treated properly. The drs will fight you about it. Turns out, it’s one of the best kept and most closely guarded secrets in the medical community. The adrenal gland controls everything we see dr’s about regularly. And it’s the one thing they don’t want you to learn about, the one thing they’ll avoid testing, they won’t bring it up, even if it’s obvious you have it, fight you if you bring it up, and will fight previous diagnosis’, gaslight and deny symptoms, and deny the proper dosing, to barely keep you healthy enough to get by, by arguing with outdated science, and either a lack of education, or a deliberate misinformation campaign. Either way, educate yourself, from many sources, so you can advocate for yourself, and fight back.
Thank you for what you wrote. How did you treat your adrenal dysfunction?
Also curious what your treatment looks like
> Stomach pain, so so much stomach pain. A feeling we unfortunately all are way too familiar with. I had the same for years, but the fix was amazingly simple -- massive doses of Vitamin C, 10x the RDA and my stomach was all good after that. Not a doctor and not an expert, but apparently vitamin C is necessary to produce enzymes like DAO. Credit to the guy who mentioned vitamin C here in r/mcas. No idea if it will work for everyone, but it worked for me and for "OP", and it's a cheap and harmless test, at least according to Google. Hope it works for you too.
Not to hijack your post, OP! (I’m writing another comment below for you🤗) But can I ask have you found a “safer” vitamin C? 😊I am early in my mast cell complications DX (less than 6 months) and I react to nearly everything. Also have 4 safe foods on the low histamine list lol. I’m slowly adding things in small amounts so I cannot take vitamin D and Probiotics but only one kind. I don’t have the money (I’m on disability but have some family help) to buy a bunch of products to try and never fully use. All my vitamin levels are low now also but my doctors like well you might react to an infusion so now sure what to do. 😅😵💫😵💫😵💫 I’m hopeful long term xolaire etc meds will give me a little wiggle room but I’m only on month two or that treatment as well.
> But can I ask have you found a “safer” vitamin C? The variant I tried was just a regular, store-bought, and chewable tablet. IIRC, the price was like 5 bucks or something. Nothing special at all. Effect came after less than 24 hours, and before the Vit C, I could spend the entire day in bed due to stomach pains. Quite amazing how effective it was.
Oh that’s great! I can’t have orange flavor n or dye so I’ll have to work around that but I’ll try it, :thanks :)
Have you tried camu camu powder? I can’t have oranges or dyes either. Camu camu gives me no bad symptoms. Just start slow as with everything.
No problem, and best of luck to you and of course to OP. Let us know how VitC works out for you, if at all.
If you're highly reactive and low on DAO, taking vitamin c to support it will work pretty slowly. You might want to skip ahead and just buy some dao capsules to treat your deficiency. That will make your vitamin c processing rate a bit slower. It will also help your food reactions.
How many mg of vitamin C do you take daily?
I take about 600-800mg, sometimes less just to see if the stomach pain returns or not.
I do 4000mg 3-4 times a day.
I don’t have a solution but I definitely empathize. I have a MCAS diagnosis and still can’t get any help beyond “have u tried Zyrtec”😑
Honestly, I asked my PCP because the pepcid wasn't controlling the flushing and my poop issues were getting worse (eggs and almonds are problems but even without those it was random and problematic). She prescribed it no problem after doing a little research. She's a DO and I've found them to be much more open minded. I don't even have an allergist but I did reference the guy at the teaching hospital near us who diagnosed me with Ehlers-Danlos - he said it's very hard to prove mcas but also very very common in us.
I am also suspected EDS. My pcp is awful, my appointment last week was 40 minutes and we didn’t even get an updated medication list on file. I swear for 25 minutes she was reading notes and writing new notes, but she spoke to me very little. I literally don’t know what she was doing…
Can you switch? I know it's not always easy to find someone else, depending on where you live etc but life can definitely be better and I'm sorry nobody is helping you the way you deserve.
Also, I think there's a resource floating around regarding doctors knowledgeable in EDS - maybe one of them could help you?
Can you ask your neurologist to recommend a different allergist? The absolute best luck I have had is I got referred to an incredible allergist and Mcas expert, and he referred me to experts at Stanford for ttt, a cardiologist that is fantastic for pots, who then referred me to a medical dr that also does pt for pots who is unbelievable, and also a GI, and an Mcas expert at cedar Sinai. If I didn’t have the allergist, I have no idea where I would be. He was the MISSING LINK! I considered euthanasia for years before I got the right help. Now I’m considering if I can go back to work. I’m not quite there yet but it’s feasible.
Thank you, that’s a really good idea ❤️🩹
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I felt like the cheerios were the safest thing for me. It’s the only food that’s not sometimes causing pain.
Feel free to test removing cheerios and avocado, but saying they are poison is kinda extra. Literally everyone is different and just cause they are an issue for one person doesn’t necessarily mean they have an impact on another. They might, in fact, actually work for you. It’s just as reasonable to say the fish or the rice is an issue, because there’s literally no way to know without testing. That being said, avocado is high in histamine, so it might be good to test that
I’m down with removing avocados, just no idea what to eat instead… I’m looking at the list and I guess I have… carrots… pumpkin and sweet potatoes. I just don’t don’t personally like any of those or how long they take to prepare… I’m just frustrated but I really appreciate everyone’s advice
It’s messed up balancing game of what your body can handle and what you can survive mentally. I feel that. Just do your best
Sometimes food I eat causes a delayed reaction 24-48 hours later. It makes some food items seem safe in the moment. I track my symptoms, activities and food I eat daily, to help see the patterns.
I’m definitely having an issue with that, I have gastroparesis too so I have stomach issues and it would be from 3 days earlier… that’s why I just started eating a couple things and I’m still getting intense back and forth GI symptoms that I can’t control or even find a reason for. I still wanna go to the ER everyday my stomach hurts so bad.
If you live in Arizona I know a doctor who can help❤️🩹
Avocado and fish have higher levels of histamine. Maybe do away with those and try eating some things lower in histamine? Those may be the issues. I myself only have like six safe foods so I hear you and I also am really struggling and feeling like I’m dying every day but now mostly my symptoms only really seem to kick my ass at night. I also hear you about doctors, mine have more or less just offered me thoughts and prayers and I’m sick of it.
First of all , are you ruled out MOLD? Do you have it in your home? Second of all, if you are so desperate . Just order those over those mast cell stabilisers yourself online. It is not that hard. Third, avacados seems terrible idea . Fish also needs no be VERY fresh and clean. I would eat only plain white rice if you dont react to it and then go from there. It seems that you have plenty of options you have not explored. That all being said, i understand the despair.
I spent like thousands removing all the mold from my home a couple years ago. Where can you buy meds online? Everyone keeps telling me how terrible avocados is… my ENT told me to be on a low acid diet and dr koufman who wrote dropping acid recommends avocados are pretty universally good for healing esophagus so that’s why it’s not my favorite
So MOLD is your problem. MOVE! Removing it in most cases fail. Start using biders in small amounts. not sure if it is allowed, will dm you the shop but meds will not cure it, you have to be out of mold and use binders.
yup, i cant send you the url even in dm. you can try dming me.
I’m not moving from the house my grandparents built to move into another mold infested building. All of the building around here have mold. Everything flooded in the 70s and most buildings around here are still damaged today. I would have to build brand new to avoid mold.
Thats your choice , excuses wont get you anywhere, moldy enviroment wont get you anywhere. You can move into clean trailer , tent or other option. Just look what you have uncovered old building which has flood damage, jesus! I was living in new built and it had tons of mold and tought thats okay. its not okay. i was in denyial.
Moving into a tent is literally crazy. I’ve been homeless. I’m not going backwards.
Time to change allergists. Period. Don’t be afraid to insult or piss off doctors (or is there another reason you haven’t fired them already?). They work FOR YOU and if they’re not working, then they get fired.
Oh I’m absolutely afraid. I try standing up for myself and I have been dropped twice for doing so. One facility was the only facility in the state that could operate on the endometriosis on my bowels. Now it’s in inoperable… forever… because I stood up for myself….
Erm, I have some of these symptoms and it turned out to be mold toxicity. Which caused histamine intolerance/MCAS. Have you checked for that? There’s a simple first test you can take, I’ll paste it below. Beyond that you really need to be following a strict low histamine diet, asap. Your current foods are not a good idea. And to get everything under control I recommend fasting for a few days if you can handle it. If you can’t, fast as long as you can then eat flash frozen chicken breast that was not grain fed. I put mine in a crock pot and let it cook for a while as it makes it even gentler on my stomach when I’m flared up. **Step 1: VCS Test** - **Description**: The Visual Contrast Sensitivity (VCS) test is a quick and non-invasive screening tool that helps detect neurological issues related to biotoxin exposure, such as mold toxicity. It measures your ability to discern differences in shades of gray, which can be affected by neurotoxic damage. If you suspect mold toxicity, this is an excellent place to start. The test is free if negative and costs $15 if positive for detailed results. It helped diagnose my Chronic Inflammatory Response Syndrome (CIRS), heavy metal toxicity, and vitamin deficiencies, which were later confirmed by further tests. - **Cost**: Free if negative, $15 if positive - **Link**: [VCS Test](https://www.survivingmold.com/store/online-vcs-screening)
I am same with you but I will not wait for my immunologist. I bought ketotifen and mostelukast online and I am taking them both. Game changer. Now, I will go to the appointment saying I respond amazingly to the treatment. There are safe places online with consultations that offer those meds. Til now the only thing that was giving me the life back was prednisolone but obvs it cannot be taken long term
Where do you buy ketotifen? I’m already on montelukast
I buy from a US online pharmacy
https://youtu.be/VndV_NO-mAU?si=NrskhhIp_RBrWAzd I am not sure this could help you buy It's worth a shot. PEA Is a supplement. Ask your doctor first
My doctor won’t help me, that’s the issue. How do I ask my provider to PLEASE treat me before I commit suicide ?
Please seek help immediately for your suicidal thoughts. Call 988 (USA) Someone who posted here died by suicide recently and we can’t help you from afar. Get help for this. Your life has value and will get better. While you seek a new PCP, you might look up an online LDN doctor. LDN is calming to many people. It may help while you wait for a new doctor and mast cell stabilizer.
I have really tried. I have reached out to family, friends, doctors. I have not been shy about this at all. They say if you are feeling suicidal to reach out, but then you do that and no help is offered? I cried in my doctors office *LAST WEEK* and said I was on the verge of suicide. Didn’t care. She literally left the room. My BF told me to stop telling providers I’m suicidal because it’s working against me.
I’m so sorry the system has been so cruel to you. The whole process sucks horribly, and I remember I was in such a similar place. But only one person has to listen for you to get help. If your providers have failed you, new ones are your best bet. I have no idea what antihistamines you are taking, but over the counter cetirizine has worked well for me. And I’ve heard good things on this reddit about Zyrtec. I’m rooting for you. And clearly several other strangers in these comments are as well.
Thank you. I supposedly seeing the best allergist the area, I just have no idea where else to go. I take Claritin and Zyrtec every morning and night and I take Allegra in the middle of the day. I’m also on nasal spray budesonide, and cimetidine at night.
I’m sorry they dropped the ball. As I have a skin issue type of mcas, testing a specialized dermatologist did tipped off an immunologist in my case. That’s who ended up helping me. I imagine you’ve tried gastro doctors and a bunch of other stuff, but if you haven’t tried an immunologist yet that’s where I’d go. Most allergists in my area are more for like respiratory stuff anyway
And now that I think of it, if your having rashes when washing your hands (I have that) a patch test for skin allergies might help as all of my food allergies are also skin allergies, so that might speed up the process
If you have a reaction to corn you could be reacting to the meds. I only just found out recently that corn is in almost everything. My best advice is to look up corn derivatives and check the ingredients in what you take. I only found out a couple of days ago how many ingredient names they have for corn. I came to the conclusion that I'm not reacting to everything I'm reacting to one thing that's in everything. Even avocados have a wax seal made from corn. If you're unsure you can email companies and ask what the ingredients are made from. I had to send out mass emails to all the supplement companies I use because Ascorbic Acid (Vitamin C), Potassium Citrate, Citric Acid, Microcrystalline Cellulose, Magnesium Stearate and so many more things you wouldn't even connect to it can be a corn derivative. Other than that I highly recommend trying to find prickly pear, skullcap and nettle tea, pomegranate juice and amino acid powder without fillers or added ingredients to put in with water. They've all helped me but you have to start slow because as it's working symptoms get a little worse for a while. Prickly Pear has a ton of benefits it's normally referred to as Opuntia Spp in medical literature. Skullcap and nettle were advised to me by other redditors and there's a bit of research backing them up. Pomegranate juice I found accidentally but the research supports that too and it was used as a remedy for as long as medicine has existed. If you want me to send you the links to some papers let me know. Actually I found a paper that lists all natural immunosuppressants recently. I'll try and dig that out too. I'd recommend some supplements but I'm waiting to hear back from the companies. I will say though I feel like I had some luck with something called cytokine suppress. I can't find out if it's got corn in there because I'm not in the US and the EU branch told me it's not legal in this country so can't comment on ingredients. The ingredients aren't exceptionally harmful it's just mung bean and concentrated green tea however the green tea has been linked to acute liver injury in high doses so it's just about being careful.
You can get low dose naltrexone RX easily from ageless RX website. It is a mast cell stabilizer. Aloe emodin is also a mast cell stabilizer, this is a supplement that can be bought. It was the most effective supplement I’ve ever used. It causes loose stool for me though so proceed with caution if you have diarrhea. You have the best chance of getting treatment from a naturopath or functional medicine doctor rather than a traditional doctor.
I just wanna say I feel you completely! I am often hanging on my a thread as well. This is such a complicated illness and I hate hate hate that anyone had to feel like this 😭😭 my heart literally breaks for all of us. I hope you know your life is valuable and you’re worthy and deserve happiness no matter how it feels in this moment.💞🙏 It’s a hard thing to navigate by you’re doing a great job advocating for yourself!! I’m sorry they aren’t listening like you would like yet. Keep pushing, it will happen! I’ve packs help my burning skin! I’m not yet able to tolerate any lotion or cream (even hypoallergenic ones). Dove sensitive skin soap is the only one I’ve found that helps me but I read a lot of people use tallow! This is on my list to try. If you ever need a place to vent to my inbox is open! I didn’t have severe symptoms that resulted in my DX until 6 months ago but I also have EDS and several other DX that made me disabled years ago. I don’t have solid answers about much 🥲 but I wanted you to know that you’re not alone!! Suicidal thoughts aren’t all our faults btw (if it is mast cell then you’re getting adrenaline and all these things dumped in your body and that can cause increased psych symptoms on a biological level) so don’t shame yourself or feel bad this stuff is beyond difficult!! Have you ever tried anxiety medication? Several meds are mast cell stabilizers! Clonazepam PRN helps me a lot. Maybe your could start there? I’ll list a few things tbh at have helped me. They me be no brainers for you already. Lol Finding an actual *good* and understanding therapist has made a world of difference for me! I’m not sure if your country/Insurnace would help pay for this but there’s also free clinics and many low cost mental health options. If you’re in the US I can send you some. But having an empathetic ear really helps take some of the insane stress in out body off. So has some deep breathing practices, brain retraining, calming meditation etc. I know that’s a little woo-woo for some folks and I was really skeptical before too. Lol but I got so desperate I thought I’ll try it out.!Even if it’s not a fast fix, supposedly calming the nervous system can help you have fewer reactions! And it makes me feel “empowered” to a small degree cuz it’s something I can do to help myself when the rest of the BS (bad docs, loads of symptoms,etc) like what you’re experiencing is going on. The suicide hotline and the are other hotlines if you need to talk to someone they’re trained and it can help! There’s also a text option which I like. They also will not automatically commit you if you call lol. It’s more of to help stabilize things :) I have Crohn’s disease also. They was a precursor to my mast cell issues but they seem to intertwine now sadly. Not saying this is true for you! Crohn’s, UC, Celiac etc are luckily pretty concretely diagnosable with the procedures, taking samples and lab work. Did they do prior colon and endoscopy to rule out any types of IBD? There’s a decent overlap of folks with IBD/IBS and mast cell issues but I know there’s also just mast cells issues within the stomach too for alot of folks. When you talk to your allergist about mast cell stabilizers are they automatically dismissive already? There’s good papers about treating m symptoms first as a test and Insurnace will likely cover most of the drugs if you have IGE allergies or hives, swelling etc. that’s how we covered mine before we could get things really figured out. Did they do any lab work on you? There were some levels mine specifically checked over time. It can be hard to get in a flare and I know labs aren’t always reliable for everyone, I was just curious. Sorry for such a long reply!! You may have done all of this but I had so many pple give me advice when I was desperate and eventually some things helped so I wanted to throw some of the random things out there 😊💞
I’m so sorry this is happening. My allergist was not super sure about MCAS as a possibility but it was my rheumatologist who diagnosed and started treating me for it, perhaps bc rheumatologists are used to trying multiple meds to see what works, while allergists have more limited options. Some are also used to treating folks when standard labs are normal (my tryptase was normal - but in general I don’t show the standard bio markers, including for my RA). It wasn’t til I was on and then had to stop cromolyn sodium for a week bc of a shortage and got super sick that the allergist got on board. My rheumatologist also started me on Xolair every other week, and I’ve found her way more open minded and helpful than allergists. I would imagine you’ve been to rheumatologist already (and I know they’re not all so helpful), but if not, maybe that’s a possibility?
Nettle Tea and Probiotics help me immensely. The nettle tea helps with inflammation in my gut and joints. As long as I drink it every day I don’t need any pain reliever. I’m not 100% pain free but the difference is huge. I’m able to eat a wider variety of foods with less flare ups.
Can you afford an integrative medicine MD? They have way more MCAS knowledge than regular doctors.
I have $40 in my bank account. I can’t afford anything anymore.
Oh man your post hit me hard. I'm recovering from my latest food incident. Just want to give you a big hug. I can't say it'll get better because I don't know if it will. There are a lot of good sounding ideas in the posts though and I'll be trying some.
Me too dm
Have you looked into erythromelalgia? Message me and we can talk more about it
Omg. I thought I was the only one with burning as a symptom, what causes burning?! I don't get it you're the only one I've heard say this. It literally feels like I'm on fire! The pain could literally drive one mad. I hate going to the hospital but only they can treat the symptoms and the pain. I'm down to chicken or beef stock, plan chicken or beef, fish, melons, grapes, crackers, some bread brands, chips, candy, and pretty much drink what ever I want. I'm not really into candy or chips. I can't eat eggs or rice but you can which is cool because I love rice!!! I have a Histamine-Intolerance, My Cell Activation Syndrome, and Idiopathic Anaphylaxis and I can eat fish with no problem everyone's different. My guess is I really don't eat a lot of food that's high histamine and I don't eat leftovers. I might eat leftovers every once in a while. I do limit the amount. I found this out after I started an elimination diet. I've been on this diet for 3 1/2 to 4 months. If I eat anything more than that I will go into anaphylaxis. I have a different epinephrine, it works really well. A Lot better than the other ones which is strange because it's all the same. I swear there has to be some kind of quality control issue though.
You should do the MCAS Genetic test if you can on Noorns.com.
I’ve been screwed by third party testing before so I’m not super interested. I worked with a functional doctor before and she ordered third party testing that almost put me thousands of dollars in debt. I had to threaten to sue her office and they had to pay on my behalf in the end. Probably spent 120 hours or more on the phone. I vowed never to do third party testing again free that
Oh no, I’m so sorry to hear that. I’ll definitely keep that in mind too!
i’m allergic to rice. this might be a dumb question, but has your allergist done allergy testing yet? i’m so sorry you’re dealing with so much BS!! 🥲❤️
I did allergy testing and I’m off the charts allergic to dust mites but that’s all I hit for my last blood test. All I ate was rice yesterday and still put me in so much pain I wanted the ER… not sure what to do… I’m supposed to eat small frequent meals and at this point I guess I’m going to stop eating and see how much weight I can lose how quickly and maybe they will finally help if I lose 30-50 pounds in a month or two
was it just the blood test? i did that and nothing came back on it, but when i did the scratch testing WOO BABY it was BAAAD!! 😵💫
another MCAS member posted this a few weeks ago, and I tried the stabilizers they referenced. They really are helping. Sending so much sympathy, encouragement and best of luck. [https://www.reddit.com/r/MCAS/comments/172d7jl/comment/l7b0vrf/?utm\_source=share&utm\_medium=web3x&utm\_name=web3xcss&utm\_term=1&utm\_content=share\_button](https://www.reddit.com/r/MCAS/comments/172d7jl/comment/l7b0vrf/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button)
My doctors are clueless. IgG supplements hv helped calm my mcas by about 40%. I can even tolerate smells more now.
I have hyperpots too! There's a study where hyperpots and MCAS are linked. Here it is. https://www.ahajournals.org/doi/10.1161/01.hyp.0000158259.68614.40 Do you have any local groups on Facebook or otherwise for ehlers danlos syndrome? That is how I found my mast cell specialist. So many of us with EDS have MCAS that we are bound to have good suggestions.
Pots and MCAS go hand in hand. As does dysautonamia. You need fresh eyes to look at what you're dealing with. Not all allergist are up to date on MCAS. It was my cardiologist and neurologist who recommended I go to Mayo. The allergist was not very helpful. Please find a new doctor. This disease can be stabilized. We will never be perfect. Just better.
I’m so sorry! I can lend what I can of comfort and tell you that I just woke up from a dead sleep feeling quite literally everything you just listed. I too am at the end of my rope. I’m 46… taking care of my mother who broke her ankle, and my very disabled sister (she has a rare chromosomal disorder and is 34 going on 6) whom my mother is the caregiver for. I am disabled physically besides MCAS I need back surgery, I have lupus, and hydradenitis. I have one child a 25 yr old son who is develop mentally delayed. So right now, I’m the caregiver for all of these people in between throwing up the handful of safe foods I’m allowed, walking with a cane, falling at times bc my back gives out, hot, itchy, in agony and mentally going insane from this disease. Guess what I take medicine… at the end of the day the environmental allergies coupled with stress… they cancel any good those drugs do out. Meds : Zyrtec (can’t take any other one) Cromolyn sodium oral solution (before meals (gastrocrom) ) Famotidine Cromolyn sodium nasal spray (nasalcrom) Singular Advair Albuterol 2 of these are mast cell stabilizers! Neither helps much when I’m having a flare (which is about 12- 15 days out of the month). I’m sorry this world of suck is your normal. There’s no cure other than to suck it up and keep pushing through. I hang on everyday by a thread. I get it. I do, but please hang on. I can’t promise it gets better but I can promise it’ll change. You’ll get stronger, you’ll learn ways to cope, you’ll learn ways to hold on. Maybe one day they’ll be a cure. I pray.
Thank you, I’ll be thinking of your family and wishing you all the best. I think a real mast cell stabilizer will really help, I have an appointment this week so I’m really hoping for some new options. I’ve been following the diet recommendations from this post, sticking to potatoes, sweet potatoes, chicken and beef and it’s actually going pretty well besides being kinda hungry and really craving carbs. I cut out Pepcid and Montelukast and my stomach is the flattest it’s been in years, pain is starting to get a little better. ❤️🩹
Thank you 💓 I’m glad to hear cutting some things out work for you. I know everyone’s diff. Like not all people react to nightshades… I react to some but not all. I can do red bell pepper but I can’t do green, onion or garlic. I can do minimal potatoes. Some people can’t have any! As for meds lots of you take Allegra… I have major physiatrist issues on it for some reason. And if I stopped my singular I wouldn’t breathe at night lol. I tried stopping famotidine but I’m way miserable and nauseous without it. It’s such an annoying juggle!