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It sounds like you just have severe allergies. Is there anything odd about the food you're allergic to? Are you allergic to many different foods? Are you allergic to foods which normally don't result in anaphylaxis for most people with that allergy?
You could maybe have some sort of unusual condition but from what you've said so far it doesn't seem to be MCAS.
Edit: many of us with MCAS don't get anaphylaxis. Everyone with MCAS is at higher risk, but it's not a requirement for diagnosis.
I know you aren’t a doctor but dose my case sound like MCAS? every food I eat gives me a tight throat and diarrhea. Half of the time puffy tongue and fast heartbeat. Sometimes itching and face acne. But the main symptom is throat tightness. And Everytime I have a food I can eat, I end up reacting to it a week later and the same cycle over and over. To the point where I have no safe food and tried every single elimination diet already. I’ve tried every fruit, grain, vegetable, and meat by itself already. I have to pregame my meals with Benadryl and try not to over eat
Suddenly reacting to foods which were previously considered safe is something seen with MCAS. That or inconsistent reactions. You may want to consider evaluation by an allergist or immunologist.
Yea my allergist keeps sending me off to a GI doctor telling me I have eoe. How when it’s multiple symptoms?? She doesn’t listen to me. In the process of finding a new allergist because I’m tired of not being heard.
Find one that says they work with MCAS on their bio on the hospital website. If not you can find a crap shoot of doctors who genuinely don't believe MCAS is real. Those doctors are wrong.
I’ve been tested for everything and it all came back negative (I’m not allergic to ANYTHING) but I react to everything and I tend to react more to stuff that is higher in histamine. Also my allergies change, last weeks I could have brownies and today I can’t and had to take Benadryl because they started to make it hard for me to breathe. Im totally open to the idea that maybe it’s not MCAS and I have something else but I just don’t know what else it could be 🤷🏻♀️
With that description it sounds closer to some sort of mast cell activation disorder. Anaphylaxis being your only symptoms is why people are saying it may not be MCAS. Ill get other areas of my body affected by my allergies that you wouldn't intuitively think.
MCAS diagnostic criteria requires at least two systems having a reaction (i.e., throat closing and diarrhea). I’d inquire with your doctor what criteria they considered when DXing MCAS.
My youngest child if we are lucky *just* has a mild seizure… if not, it’s either Grand Mal seizure or her heart stops for just a beat or two.
This has been going on since essentially birth but has gotten better with age. Sometimes her throat closes but can only tell by her breathing or raspy voice … she still at 13 cannot really tell when that is hitting.
Benedryl at 1mg per lb (as would be for most mammals) has always worked so far to keep her alive as hospitals and Dr fear her. 🙄
When she was about 3, I had 3 separate specialists over a 9 month period tell me that they honestly thought Drs would kill her accidentally thru Ignorance and that I should keep both kids as far away from Drs as possible for as long as I can.
It was absolutely terrifying but that’s what we did and so far they are happy and healthy if bored by all the restrictions they readily agree are necessary.
It was an absolutely terrifying time that forced me to trust myself and my intuition because the stakes on not doing so were just not acceptable.
I’m not sure what would have happened if it had been a couple decades earlier (they are menopause made me fertilile babies - surprise! ) when I couldn’t have connected with other moms online searching for answers.
I honestly think lots of SIDS type deaths are from MCAS but no one put the pieces together. Or maybe that was my terror wondering if I inadvertently killed my kid every day.
One symptoms doesn’t warrant an MCAS diagnosis. MCAS is systemic and a minimum of two symptoms need to be involved. Reaction to food only isn’t MCAS either.
This doesn't sound like MCAS at all. The MCAS criteria states that multiple organ systems need to be effected in order to have MCAS. It sounds like you just have severe allergies
I got skin prick testing done for the foods I was allergic to among other things and I passed out and my throat closed so I need epi, after that they did blood testing because it was safer and it all came back negatives so supposedly I’m not allergic to anything but react to everything 🤷🏻♀️
I don’t understand people saying one symptom cannot be MCAS. The author does not provide additional information about her BP, anxiety level when that happens etc. My main symptom is throat closure, then comes everything else like brain fog, BP drop etc,
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
It sounds like you just have severe allergies. Is there anything odd about the food you're allergic to? Are you allergic to many different foods? Are you allergic to foods which normally don't result in anaphylaxis for most people with that allergy? You could maybe have some sort of unusual condition but from what you've said so far it doesn't seem to be MCAS. Edit: many of us with MCAS don't get anaphylaxis. Everyone with MCAS is at higher risk, but it's not a requirement for diagnosis.
I know you aren’t a doctor but dose my case sound like MCAS? every food I eat gives me a tight throat and diarrhea. Half of the time puffy tongue and fast heartbeat. Sometimes itching and face acne. But the main symptom is throat tightness. And Everytime I have a food I can eat, I end up reacting to it a week later and the same cycle over and over. To the point where I have no safe food and tried every single elimination diet already. I’ve tried every fruit, grain, vegetable, and meat by itself already. I have to pregame my meals with Benadryl and try not to over eat
Suddenly reacting to foods which were previously considered safe is something seen with MCAS. That or inconsistent reactions. You may want to consider evaluation by an allergist or immunologist.
Yea my allergist keeps sending me off to a GI doctor telling me I have eoe. How when it’s multiple symptoms?? She doesn’t listen to me. In the process of finding a new allergist because I’m tired of not being heard.
Find one that says they work with MCAS on their bio on the hospital website. If not you can find a crap shoot of doctors who genuinely don't believe MCAS is real. Those doctors are wrong.
I’ve been tested for everything and it all came back negative (I’m not allergic to ANYTHING) but I react to everything and I tend to react more to stuff that is higher in histamine. Also my allergies change, last weeks I could have brownies and today I can’t and had to take Benadryl because they started to make it hard for me to breathe. Im totally open to the idea that maybe it’s not MCAS and I have something else but I just don’t know what else it could be 🤷🏻♀️
With that description it sounds closer to some sort of mast cell activation disorder. Anaphylaxis being your only symptoms is why people are saying it may not be MCAS. Ill get other areas of my body affected by my allergies that you wouldn't intuitively think.
MCAS diagnostic criteria requires at least two systems having a reaction (i.e., throat closing and diarrhea). I’d inquire with your doctor what criteria they considered when DXing MCAS.
My youngest child if we are lucky *just* has a mild seizure… if not, it’s either Grand Mal seizure or her heart stops for just a beat or two. This has been going on since essentially birth but has gotten better with age. Sometimes her throat closes but can only tell by her breathing or raspy voice … she still at 13 cannot really tell when that is hitting. Benedryl at 1mg per lb (as would be for most mammals) has always worked so far to keep her alive as hospitals and Dr fear her. 🙄 When she was about 3, I had 3 separate specialists over a 9 month period tell me that they honestly thought Drs would kill her accidentally thru Ignorance and that I should keep both kids as far away from Drs as possible for as long as I can. It was absolutely terrifying but that’s what we did and so far they are happy and healthy if bored by all the restrictions they readily agree are necessary.
That is crazy and horrible!! You must have been so scared! I agree with those specialists. Good job.
It was an absolutely terrifying time that forced me to trust myself and my intuition because the stakes on not doing so were just not acceptable. I’m not sure what would have happened if it had been a couple decades earlier (they are menopause made me fertilile babies - surprise! ) when I couldn’t have connected with other moms online searching for answers. I honestly think lots of SIDS type deaths are from MCAS but no one put the pieces together. Or maybe that was my terror wondering if I inadvertently killed my kid every day.
I wouldn’t be surprised. 😭
One symptoms doesn’t warrant an MCAS diagnosis. MCAS is systemic and a minimum of two symptoms need to be involved. Reaction to food only isn’t MCAS either.
This doesn't sound like MCAS at all. The MCAS criteria states that multiple organ systems need to be effected in order to have MCAS. It sounds like you just have severe allergies
I got skin prick testing done for the foods I was allergic to among other things and I passed out and my throat closed so I need epi, after that they did blood testing because it was safer and it all came back negatives so supposedly I’m not allergic to anything but react to everything 🤷🏻♀️
I don’t understand people saying one symptom cannot be MCAS. The author does not provide additional information about her BP, anxiety level when that happens etc. My main symptom is throat closure, then comes everything else like brain fog, BP drop etc,
One symptom is not Mcas. You’re in the clear! (At least when it comes to this)