Mast cell Puns

I’ve been treated for rosacea for 2 years and nothing has helped me. Today I was explaining symptoms to a friend and she said she thinks I have mast cell disease. I looked into it and match almost all of the symptoms. It can be mistaken for rosacea, contact dermatitis, and allergic reaction. All of which my doctors have diagnosed me with but treatment never helped. I’m going to ask my doctor about this and get tested, but wondering if anyone else is familiar with it?

Almost two years of investigation and finally getting some answers to why I'm in pain -- turns out that covid caused a build up of mast cells (Mastocytosis) in my body, which makes sense why antihistamines reduced the pain, because they block the histamine release that mast cells trigger. Getting a bone marrow biopsy next week to see if it's mast cell leukaemia but hoping it is 'just' regular Mastocytosis, and apparently it seems my body is attacking it's own platelets?

Glad to have some sort of eureka moment with the doctors, after months and months of being in a grey area, but feel a bit frustrated that it took this long to spot something that I suspected from my own research a year ago.

Just wondering if many others have been diagnosed down the mast cell route? Anyone else with the combination of very low white blood cell count, red blood cell count, and lymphocyte count?

Hello all. I don’t see any way around having shoulder surgery. These tears are not going to repair themselves of course, and the pain is becoming just…unbearable.

As with all of us, we just have so many things attacking us at any given time that fear has really started to take hold. Fear of the anesthesia, fear of how well my shoulder will fair as far as healing. The list goes on.

My surgical consult is on Monday and I guess I’ll go from there. And I know there are people here who have had successful surgeries. I am just terribly afraid of having some new reaction while under…

I’d love to hear as many success stories and encouraging words as anyone would care to share :)

Thanks!

What are all of the tests that I should ask an immunologist to run on me to try and diagnose a mast cell disorder? After reading Never Bet Against Occam, I think I have a partial list that consists of: tryptase, N-Methyl Histamine (24h urine), Prostaglandin D2 PGD2 (24h urine), 11Beta-prostaglandin F-2alpha (24h urine), serum albumin, serum LDH (what does LDH stand for? wrote this down but don't know what its an abbreviation for), serum alkaline phosphatase. Any further tests or advice or information would be greatly appreciated!

Backstory: After spending the last 5 years trying desperately to figure out what was causing all of my digestive issues, I just read the Dr. Afrin book and realized that some sort of MC disorder affects myself and several members of one side of my family. I have an appointment with an immunologist in 2 weeks. I have had several doctors in the past tell me that I am crazy, and that all of my problems are psychosomatic. In light of that, I don't know how much or little this doctor will know about mast cell disorders, so I want to be prepared with a list of tests to ask him to run on me to try to produce a diagnosis so that we can start to pursue treatment. My symptoms are almost entirely digestive and brain fog/anxiety, almost no skin symptoms which is probably a part of why it took me so long to figure this out.

Last year, on top of all the anxiety the pandemic had brought me, included thousands of dollars of house repairs and my wife being diagnosed with MS, the process of which put her in the ER. Then I was scheduled for an invasive medical procedure and the clinic were terrible and broke any trust; I ended up not actually needing the procedure despite the clinic doctor raising my fears about my health.

All that has, what my wonderful primary care doctor has labled it, caused my cPTSD to "flare". This in turn has lead to what looks like Mast Cell Activation Syndrome. Stress makes my body think I'm having an allergic reaction now, which is NOT fun.

Has anyone else had experience with this? Any tips?

I've got a new med for my anxiety coming, a completely different approach from the cocktail of brain drugs I already have. I'm hoping it will help with the MCAS since it should get me sleeping again, lower pain, and reduce anxiety.

Can anyone guide me to resources aimed towards mast cell dysfunction information that also links EDS and what it all is? At first I dismissed it for myself, but I’ve started to worry. I have a sever allergy to wheat, but my immune reaction is chronic pain not anaphylaxis. Even though my allergist was highly surprised I didn’t go into anaphylactic shock every time I ate it 😂 as of today, I don’t have any anaphylactic shock, but several random allergies that cause me to develop hives or cause chronic pain. Now I’m interested in looking into mast cell activation syndrome just in case and go on a low histamine diet and start up my old allergy meds. I’m allergic to like half the plants outside 😂 but when I moved from my childhood home I stopped having snot attacks so I stopped.

I have lots of chronic illnesses (mental health and physical) for a mere 26 years old and I’m convinced they’re due to inflammation. Lots are treatment resistant, especially the anxiety and depression. I suspect histamine intolerance (possibly mast cell issues?) due to mold, candida and likely SIBO.

It seems like a lot of anti inflammatories aren’t good for histamine intolerance.

Anyone else dealing with inflammation & have any good recs?

Already addressing inflammatory diet.

(Long short but any one else here have PCOS? I’m sure that’s causing inflammation or impacted by it)

Thank you kindly ~

EDIT: Especially neuro-inflammation

I respond to hydroxyzine very well at times. Sometimes I don't have much of a response to it.

My pelvic floor PT told me my pelvic floor is not an issue. Diet is not an issue for me either. My Pelvic floor PT thought bladder instillations would be helpful. I've tried some of them before, and they don't really do much for me... the lidocaine makes me feel great, but then it wears off in a couple of hours and I'm back to feeling bad.

What kind of bladder instillation is good for targeting mast cell inflammation in the bladder? Or is there a drug that works better than hydroxyzine? I also take low dose amitriptyline.

Thanks!

Hi team. Have any floxies had bad reactions to mast cell medications - for instance, ketitofen, cromolyn, etc?

Also curious about mast cell supplements - Luteolin, rutin, celery seed, stinging nettle, etc. I know quercetin is popular here and seems well tolerated. I have no plans to do supplements for a while but would like to know.

Looking for advice on new treatment tigilanol tiglate injection (Stelfonta) for mast cell tumor in dogs/cats.

We found out that one of our dogs (rescue, mixed breed), age 3, has a mast cell tumor on the left side of her back. The vet has given us the option of traditional surgery or the newer form of treatment tigilanol tigilate injection - which is less invasive but relatively new. It was FDA approved only November 2020, with effectiveness shown in a study of 118 dogs (tbh not sure if that’s considered standard size or not).

We are leaning towards the injection option since the pup in question doesn’t seem to recover well from surgery (she had a separate surgery earlier this year to fix a prior suture reaction and now has signs of slow healing over the second surgery’s sutures), but the fact that this treatment is so new - worries me.

Question: Have your dogs/cats undergone this new treatment? If so, we'd love to hear how it went and how you decided between that and surgery (if there was a choice)! Thank you in advance!

My beloved 2 year old Italian Greyhound. She has great energy levels, no signs of illness. She had a small bump that grew on her tail within a month. I suspected it was a wart. Took her to the vet, turned out to be a high grade mast cell tumor. The vet removed the bump, and the margins was narrow. The vet said she got it all.

The vet referred us to an oncologist. The oncologist ran series of test, and all came back negative for any spread throughout the body. She is very healthy. Which is good news. Although, the oncologist wants a complete removal of her tail, and complete 12 rounds of chemo. What got us is that Oncologist said on average with high grade mast tumor, with treatment the survival for her is 6-18 months.

Which is very sad, and we can’t really afford a second opinion since I’m already about $5k in with this vet.

Is her assessment correct, and course of action isn’t too drastic?

Hello,

I have CPTSD from early childhood trauma and I know from reading research that this is connected to PMDD. (It just keeps getting more fun, lol). I notice a lot of people here are mentioning having a good result with antihistimines. Antihistamines are often helpful with a third diagnosis of mine: mast cell activation syndrome (MCAS). If you have food allergies (milk and wheat/gluten seem to be common), flushing, weird rashes, hives or migraines, these can all be symptoms of MCAS.

The connection is by no means a proven one, but I suspect the MCAS may be related to the CPTSD. Mast cells are a type of immune cell activated by stress (by corticotropin releasing hormone) and a PTSD brain is one that has the body in a state of stress more so than a non-PTSD brain.

Here is an article mentioning the PTSD/mast cell connection: https://pubmed.ncbi.nlm.nih.gov/29302258/

Another article about stress, brain injury and mast cell activation: https://www.frontiersin.org/articles/10.3389/fncel.2019.00054/full

I wanted to mention a few things that have helped me in case it would help anyone else. Things that help with one of these conditions tend to help with symptoms of all three.

• borage oil (it has more of the active ingredient than evening primrose oil does. I had to make it through one entire cycle before the effects were apparent. Reduced cycle symptoms globally including pain and mood symptoms)
• EPA only fish oil
• ketotifen (a mast cell inhibitor)
• xolair (suppresses IgE dependent mast cell activiation)
• benadryl (an antihistamine)
• dong quai (a female specific adaptogen and suppressor of brain inflammation- this one has been superb for me for PMDD)
• fisetin (an anti-inflammatory flavonoid - also great for PMDD for me)
• high dose thiamine

I also notice that some people here respond favorably to progesterone increases, while progesterone makes other people worse. I'm in the second camp. Bioidentical progesterone makes me super depressed. I have a history of feeling awful from a couple days after ovulation to when my period starts. I'm testing whether a BCP will be helpful for me and whether I will be able to tolerate it.

I don't even properly know myself! Im like... 'so ive got this thing called mast cell activation syndrome. Its where the mast cells go wrong and um.. make me feel sick'. Then they say.. what are mast cells? And im like 'umm...' 😂 Anyone got any canned responses they use to explain quickly? People dont want to hear a lecture when they ask why you cant eat things!

My girl had a bunch of skin growths removed recently and the pathology shows they are mast cell tumors (cancer). My vet will be giving me care information, but I don't think I will go so far as to try to see a veterinary oncologist several hours away or be able to pay for chemo. If anyone has been through this with their pit bull, I'm interested to learn how it went and if you have any advice to offer.

This is Gracie. She is 6 years old.

I finally got around to listening to "The Perfect Stool" podcast. At the end of this week's episode they started talking about butyrate and its effect on mast cells in the digestive tract. It sounded very positive. Certainly famotidine isn't doing it for me.

In particular they stated you should take an enteric coated tributyrate so that it gets down into your small intestine and even your colon.

Now I realize all these people have stuff to sell us, and this stuff ain't cheap. But I am intrigued.

So I looked at this guy's website, healthygut.com, where they sell their brand. They're also selling an ebook on SCD, the specific carbohydrate diet. I live 5 minutes from a very large library so I am going to get some books out on that.

The guy did mention that Pure Encapsulations also makes a supplement which I did find on Amazon. It's a flavored liquid so how well you tolerate it is debatable.

I also looked around the web a bit to see what others say about tributyrate and MCAS. Mastcell360.com has an article, but again, I think she's all about selling things. I did find this https://www.azwellmed.com/2021/08/09/mcas-treatment-and-relief/ that mentions butyrate as a helpful supplement.

So, has anybody tried butyrate or tributyrate?

Hello,

I tried to find a medication that will help with my MCAS symptoms (mostly anxiety, high blood pressure, flushing, tingling and brainfog).

Few years ago i used DAO supplements but they are became so expensive where I live that I had to discontinue them and results were not so great anyway. I tried multiple II generation OTC h1 antihistamines including desloratadine, loratadine, cetirizine, levocetirizine and fexofenadine. All of them gave me pretty big brainfog, confusion and made me sleepy (especially the cetirizine) I couldn't focus on work so i had to discontinue them. I tried several mast cell stabilizers but all of them gave me side effects e.g. quercetine, which caused brainfog, same with nasal cromolyn. The worst one was the alpha lipoic acid - terrible anxiety and confusion, couldnt form a sentence while i was on it (it's listed on few pages as a natural antihistamine and mast-cell stabilizer.

Recently medication with famotidine became available in one of pharmacies (as we know ranitidine has been withdrawn from sale) so i bought them a few packages of it as it is one of the drugs recommended for MCAS. I did the test and noticed no normally occuring negative immediate reactions to food or alcohol - after the latter, I often was immediately anxious and confused (especially after whisky, red wine or beer). After taking famotidine, I observed that these symptoms were significantly alleviated. Does that mean something?

My allergist told me that I have a definitive issue with my mast cells, but she said that she doesn't have the capacity to treat or diagnose anything beyond the hives, but I'm having several other symptoms like daily GI upset (heartburn and diarrhea), fatigue, joint issues, intolerance to high impact exercise, and extreme sensitivity to temperature.

I was on zyrtec twice daily, allegra once a day, and pepcid, but I couldn't tolerate the high dosage and had to cut back to just zyrtec and a PPI for the heartburn.

If an allergist doesn't treat mast cell disease, then who does?

Edit: Thanks for all the advice! I managed to book an appointment to get a second opinion from a different allergist and will be reaching out to my gastro as well.

Now I don't know exactly what I should do to "properly" trigger them.

For instance, now, I feel like I'm dying and can barely open my eyes from taking my second antihistamine of the day. Is this a mast cell activation which should show higher tryptase?

Should I just go ahead and cook/smell something I don't tolerate at all?

Thanks!

Needless to say, I am devastated. She’s 5, she’s healthy otherwise, she’s a loving member of our family.

She had a tumor appear the last couple months, we just had it removed, tests came back with really bad news. Mast cell tumors, high grade 2. Spread to her lymph nodes.

We have an appointment to see an oncologist next month. But everything I’m reading is basically saying my dog has months and we can probably only extend her life by 6-12 months.

Have any of you been through this? I don’t want her to live in pain, I had planned to have her around for another several years at least. I’d rather get a few good months than bad ones, in pain, and on expensive meds with surgeries.

I am not poor, but the potential cost of the road we’re headed down scares me. Do I spend thousands of dollars just to extend her life a few months? Does she have a shot to live much longer? Is it possible this can be treated?

We lost a dog a few years ago to cancer but it happened so fast, he was 9, we had no idea. One day he just coughed up blood and he was put to sleep 24 hours later as the vet said he had days.

I’m a whirlwind of emotion right now, looking for anyone who’s been through this and how did it go? I have two kids who love our dogs dearly and two dogs who love our little Beagle. I have the means to get her great care but is this something that is a losing battle?

Thank you for any advice/support.