Anyone with Mast Cell Disease?
 

I was recently diagnosed with Mast Cell Disease and put on an antihistamine and anti-acid regime to help control the symptoms, which for me are fever, chills, headache, bone pain, hives, swelling and exhaustion. When I have a flare up, it can take me down for days.

I am going through a flare up right now and trying to avoid going to get a shot for it, so I was wondering if anyone else had it? I am looking for some practical advice on how to handle this.

I know food is involved, in fact, I think it was avocado toast for supper on Monday that set it off, but I obviously don't know much about that part of it. I just printed out a list of foods to avoid but does avoid mean never again, or can the foods that are high in histamine be eaten at a small or moderate level?

Are there certain foods that can help control the symptoms that I should be adding to my diet?

I don't have any kind of game plan on how to best manage a flare up when it occurs. Right now, I double up on the meds, but that much allergy medicine knocks me for a loop too. I would love to know how other people handle flares up and maybe discover something that might work for me too.

I think any info from anyone who has Mast Cell Disease or Histamine Intolerance would be helpful to me as I navigate this rocky road I'm on.

I've never heard of that - but I wish you well as you navigate your new reality!

Not officially, but a lot of my same issues and the medication I take is also for MCAS. My diagnosis is CIU - Chronic Idopathic Uticaria and I take monthly Xolair injections. It's been a life saver. I'm not sure if you're at the point of biologic injections, but it works for A LOT of MCAS people as well. I was still reacting even while taking massive prednisone doses on top of the 7 antihistamines (I also do the pepcid which is a 2ndary antihistamine) I take daily.

Big hugs & hopefully now that you have a diagnosis, you can get some answers & the correct meds!

Also to answer the food questions- I haven't noticed a difference at all when I eat low-histamine foods. I think my trigger is stress- so trying to curb that works for me. A weird study I read mentioned that tomatoes were a major trigger for a lot of people with CIU/MCAS- so I try to limit those as much as possible. :/

I have no advice but just wanted to give you a big hug <3

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Big hugs, Lorie! That is a lot to handle :( I am no help here, but I hope you'll get through it and manage to improve somehow soon.

So sorry to hear the news. I don't have any experience with this, but a quick google showed there are a few facebook support groups you could join?

https://www.facebook.com/TMSforacure

Fingers crossed that you find the help/advice you need and a management plan that works.

I don't have experience with this disease... but I do with other afflictions that are triggered by foods. Look into the AIP diet. You start with a very clean diet and slowly add in foods to see if they are a trigger... most of the time you do have to avoid them for the long term. Some you might be able to add in once your body heals. I had that with gluten... now I can eat some things with gluten like sprouted grains, but if I have too much - I'm in a world of hurt.

Thanks everyone for your words of wisdom and encouragement. I feel like it is manageable, so now I have to learn how to manage it.

I can't help but wonder if it was being "over radiated" that triggered it, but with so many people having it, it seems unlikely. Of course since Chernobyl, the entire world has had a lot more radiation exposure than in the past. So maybe. I don't know, but these are the weird tangents my mind goes on. LOL

I think with so many auto immune conditions that are affecting so many people these days I truly believe our food and what is put into it is is a huge thing and a bigger deal than the companies and FDA what to admit. Food quality in europe is so much better than in north america and I read about people who travel to europe and able to eat so many things that they can't tolerate in the USA... I just really think it has contributed to a lot of what is going on in our bodies :(

/ sorry for the rant!

I don't have any experience, but wanted to send you my love!

As a person who works in the food industry, I totally agree with you. And I can tell you, despite names like organic and whole, unless you are eating from your own garden and don't use any chemical fertiziler on it, there are chemicals in everything.