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Could I have Mast Cell Activation Syndrome?

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samantha96666
samantha96666

I'll try make this as short as possible.

I'm a 21 year old female with Ehlers Danlos Syndrome and POTS. Over the past 2/3 years I've had 4 bouts of GI related problems (vomiting, severe diarrhoea, cramps etc) but they've never been caused by infection, food poisoning or a gastric flu.

About a year ago when I was moving home from the village I've lived in all my life and I suddenly took a strange allergic reaction type thing. It was only on my face and it was really bad - eyes swollen shut and everything. I assumed it was something I was using and bought new make up, cleansers etc and it cleared up. It's happened twice since then with no known cause. Most recently though, I started with trouble swallowing around 7 days ago. Then 2 days later my eyes swole up and I got a rash on my face, pretty much cleared up after 2 days and then the next day I was crippled with vomiting, diarrhoea and cramps. I'm still recovering, still having some trouble swallowing and I can't help but think it's a bit more than a coincidence that all these things seem to be happening for different reasons. I find I'm always worse if I'm stressed or coming near to my period. I think it's all connected. Any help or advice would be immensely appreciated, thank you smile

0 likes, 3 replies

3 Replies

  • michelle43974
    michelle43974 samantha96666

    Posted

    You definitely sound like someone who has mast cell issues going on and if I were you I would see an immunologist right away. I have biopsy proven MCAD and have many of those symptoms when I'm triggered. I have to carry epipens because of my reactions to wasp/bee stings. I am triggered badly by dairy, soy, corn, yeast and lots of other foods and chemicals. I am also "allergic to my period" and get hives from all forms of estrogen or birth control. Aspirin and NSAIDs trigger me, too.

    Getting a diagnosis and learning to avoid my triggers as well as being put on the right medicines made a huge difference for me. Again, I would contact an immunologist right away and make sure to ask ahead of time if they know about mast cell disease. It's pretty new so a younger doctor might be your best bet. That's who finally put it all together for me. I hope you get answers, I know how frustrating and scary it is. xo

  • nscott84
    nscott84 samantha96666

    Posted

    I have the same issues, and my husband pointed out how it always happened arounf my period except when i was pregnant (the first and worst attack). I think you should do some research and find a doctor that knows about these disorders. Apparently there arent many in the US where I live so I was going to the ER repeatedly and being treated for an allergic reaction. One medic even accused me of OD'ing on some drugs.

  • sashford73
    sashford73 samantha96666

    Edited

    I have exactly the same as you samantha96666. I was not diagnosed with EDS III until 18 years ago & then about 15 years ago I was also diagnosed with PCOS. Just like you I too get bouts of digestive systems problems, usually with a lot of pain in tow!

    About the same time my PCOS was diagnosed I was also diagnosed with a stomach ulcer, largely caused by my medication or so I was told. However, despite being super careful with my medication and being careful to eat before taking them, the stomach pain continued. I would have bouts of dyhorrea and extreme pain. in the end the GP said it was IBS but whether it is or not is another question entirely! I do work full time despite having a Beighton score of 9 and having had to have a number of surgeries and more to come over the next 3 months. But all of those are for the Ehlers and not for the stomach pain and extreme lethargy that I now live with, which is always a zillion times worse when my stomach systoms flair up.

    I am based in the UK where access to medical professionals are almost always your family doctor, but because it is a government run service and money is tight, they wont refer you to the hospital unless they are forced to, which means what's actually wrong with my digestion is still a mystery.

    I wish I could answer your questions, but hopefully between us we will get some answers and then help one another 🤞🏼

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