Unusual symptoms -- could this be mast cell?

[shunter99]

Hello everyone! I have a symptoms question I wanted to ask on behalf of my husband. We've been trying to figure out if what they've been going through could be mast cell related or if it could be something else, so we wanted to know if anyone else experiences this.

My husband has typical mast cell symptoms of flushing, itching, tight throat, allergies and intolerance to most foods, etc etc. But then randomly, or triggered by different foods, they will get spells where they suddenly feel like they're shot full of adrenaline, with sudden terror, sweating, shortness of breath, nausea, tachycardia, palpitations, tremors, high blood pressure, and chest pain. During these times all of the mast cell/allergy symptoms completely disappear, even if they were just experiencing them moments before. These spells can last hours or days, and eating foods they're usually allergic or intolerant to during these times can even help them!

They've tried medications (antihistamines, quercetin, Singulair, etc) and that helps the allergy-related symptoms, but they don't affect the "adrenaline" related symptoms, and even makes the "adrenaline" worse. Is this typical of mast cell disorders? Has anybody else experienced anything like this before?

I'll note too that they've seen many, many doctors, and they have no ideas. Had lots of cardiology workup and they only found mild palpitations. All bloodwork (and believe me, there's been a lot) is always perfect. Thyroid has been VERY thoroughly tested and it's absolutely fine. It is absolutely not an anxiety or panic disorder. We've ruled out nearly everything, which is why we were wondering if it could be a strange part of mast cell disorders that no one talks about.

[Jess-UKMasto Administrator]

Hi there,

I'm so sorry they're having these unusual symptoms and not getting traction with an approach that improves quality of life. Some of the "adrenaline" type symptoms are not unusual in MCAS: shortness of breath, nausea, tachycardia, tremors, high blood pressure, and chest pain can all be mast cell mediated. It can be tricky with blood pressure. The typical presentation is with low blood pressure, but there are examples that have been documented of people who have high blood pressure. (Here's a link that some people have found helpful on that: aaaai.org/ask-the-expert/hy... IT would be good to take a look at a description of the symptoms of anaphylaxis to understand (apart from the blood pressure) if they sound familiar. High blood pressure in anaphylaxis can make doctors wary about using adrenaline because that can also raise BP, though there is evidence that in some patients it lowers the BP because it stops the mast cell event.

That said, it really sounds like a more thorough work up would be good to rule out other explanations for the set of symptoms. It would be helpful to be sure alternative explanations are being ruled out. One thorough list of other conditions with overlapping symptoms is here: jaci-inpractice.org/article...

For the chest pain, one mast cell related diagnosis that involves heart pain is called Kounis Syndrome. I am not suggesting they have that-- just that it should be ruled in or out.

It would be good to see about capturing a 24 hour urine around the time of one of these events to look for metabolites of histamine and prostaglandins, as those can be helpful in pinning down whether mast cells are involved in an event.

The meds being ok sometimes and not always does sound unusual. Do they actually help some of the time or are the neutral and then bad?

Good luck with this puzzling situation!

[Gladiator10]

I have had these exact symptoms on and off since being diagnosed with covid nearly 12 months ago! after many hours of scrupulous research, I have come to the conclusion that I have vagus nerve damage caused by the virus. Autonomic nervous system symptoms/MCAS are common amongst long covid sufferers. I believe damage to the c spine ligaments can also cause these symptoms, caringmedical.com/prolother.... I have found that following a low inflammation/low histamine diet has improved my symptoms drastically as well as surprisingly starting to eat red meat again! (I've been vegetarian for the last 12 years!) I believe the branch chain amino acids found in high-quality red meat are working wonders. This could of course be a coincidence, but I do feel almost back to my normal self with these dietary changes. My greatest sympathies go out to your Husband, it's a horrible feeling, particularly the adrenaline surge and the feelings of terror! I have never, ever experienced anything like it, I truly hope that they start to feel better soon.

[jfmmc76321]

I had very similar problems to your husband. After seeing 5 consultants and 8 GP's over about 5 years, I moved house and new GP referred me to Nutritionist specialising in gut problems. He said that patients these days were presenting with problems that GP's have not seen before, sometimes caused by anti-biotics. This lady arranged for 2 specific tests, both proved positive. The answer was bacterial over growth in the small intestine. SIBO. I was advised to eat a low sugar/carb diet, high protein, cutting out all processed foods. I was also treated with a specific anti-biotic, and I take a cocktail of supplements. The SIBO had caused mal-nutrition. There doesn't seem to be a cure for this problem, but my symptoms have greatly improved - as long as I stay on the very strict diet. The nutritionist is in Eastbourne, and can conduct consultations via Skyp/Zoom. I've recently found a very good book called The SIBO Solution. I have found that doctors have little knowledge of this problem. Two Gastroenterologists could only offer anti-biotics, saying even if the meds work, SIBO can return - which it does, all the time that it's fed on too much sugar/carbs. They have little knowledge of nutrition for this problem. One thing I read recently was that coconut can kill off the bacteria. I make a smoothy every morning from coconut milk with an apple and ginger. I feel that since I've been taking this there has been a improvement in symptoms. There is also a free from range of cheese available, made with coconut. My tolerance to other foods has improved. My health is far from perfect, but looking back to about 6 years ago, I am very much better. Really worth looking into this. Everyone seems to be looking for treatment for a cure - but nut looking into the cause.

[JimmyBrown]

That sounds most like POTS. Otherwise he should be checked for the very unlikely carcinoid tumour or a pheochromocytoma.

[Mastomum]

I have exact same. On beta blockers to calm heart which due to hospital admissions has been well documented. I worked out mine triggered by high histamine foods. Lots of other triggers for possible mast cell disease inc heat, chemicals and latest big trigger breaking my hip, which also a big clue given my age. Sent to resus to be stabilised. but no firm diagnosis as tryptase normal level but new GP has prescribed mast cell stabiliser on top of antihistamines and ordered urine test and heart monitor. Low histamine gives some release. All best x

[CTucker]

Yes, this is me exactly! It always happens to me in the morning, possibly because that’s when histamine levels are naturally the highest. Then it slowly tapers off throughout the day as levels drop presumably. I haven’t yet figured out if eating low histamine helps, but trying it out. I also stopped taking a methylated B-Complex that may have been spiking my histamine levels even higher. I’m sorry your husband is experiencing this and I hope he finds something that works to calm it.