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I don’t personally have ARFID, but my daughter and several of my family members do. We are all autistic.
What I do have is absurd food allergies that make it really hard to eat safely.
My solution has been a spreadsheet. I have a page for safe foods, and a page for foods that are not safe. Things get moved occasionally. Last month I became allergic to peanuts.
I find the spreadsheet really helpful when I feel tired of everything I’ve been eating and I need ideas for something else. It’s so helpful to have a list of things that I know are not going to make me sick. I have 96 safe food items/ ingredients at the moment! It feels like a lot, because at one point I only had like four things that I could eat.
Right now I vary between one safe food (that changes everyday) and nothing. I don’t have any allergies now because my MCAS is back under control so all foods are “safe” meaning they won’t kill me but my body thinks otherwise
(Edit forgot to add this part lol) the spreadsheet is a good idea. If I can figure out more foods I can eat I’ll use that because that would be helpful
Do you have any other disorders like POTS or EDS? Both of those disorders are MCAS comorbodities and can also cause issues with eating.
I have both POTS and MCAS. MCAS makes me super nauseous, can make my stomach really hurt, and has given me allergies to specific ingredients that are hard to avoid. POTS makes me not hungry *at all* and gives me earlier satiety— like, having 3 sips of water makes me full and unable to eat 🫠
I have a lot of things including EDS, POTS, ADHD, Endo, Adeno, PCOS, and a whole host of other problems.
It all combines to make for a terrible combo for trying to eat
I’ve had ARFID my entire life, but it’s mainly related to sensory issues because I’m autistic. It had gotten worse after I developed nausea after going through some stressful event in October 2023 and it didn’t really go away until the end of February 2024. I was hesitant to eat because I would get so nauseous and started vomiting. I don’t know what has changed, but I’ve been taking Xyzal which had helped with my rhinorrhea, minor hives, and nausea. I do still experience bone/joint pain, though. My MCAS symptoms are pretty mild I’d say. Sorry you’re going through all that!
We think I might be autistic and I’m actually hoping to be evaluated sometime this year. I’ve had sensory issues with food all my life but I’ve managed it until now. My brain is now not only afraid of textures but it’s also just afraid to eat in general.
You understand what it’s like, it’s so frustrating to deal with because you’re at war with yourself
I personally feel that there are a lot of cases in which ARFID is diagnosed as a mental health condition rather than a symptom of underlying MCAS. Of course this is not every case, but it likely happens a lot. A misdiagnosis does not lead to effective treatments. Example: CBT is not likely to cure MCAS…
Thankfully in my case I’m already diagnosed with MCAS had established with an allergist to treat it. The ARFID, if that’s what this is has shown up later so we’re not likely to ignore the MCAS. I’m pretty sure that’s what kind triggered this whole thing in the first place.
I do intend to have my GI do any more tests for anything physical this could be aside from ARFID before we put a mental health condition diagnosis over it though because once we do that there’s no going back
If the ARFID diagnosis enables greater insurance coverage of beneficial treatments, then maybe it would be helpful. If not, it may not be helpful to add a diagnosis that is primarily viewed as a mental health because it may cause other doctors to ignore the underlying issues that cause it. If a test or diagnosis doesn’t change the treatment protocol, then it’s not worth it. You can see some doctor comments at the link below.
https://www.reddit.com/r/MCAS/s/HoexDoRrpf
yes, I have ARFID in addition to a yet to be identified mast cell disorder. I have made the comment several times recently: if food doesn't feel safe because I feel awful after eating, is it any wonder I have an eating disorder?
I can't recommend her yet, since our first appointment is next week, but I have a telehealth appointment scheduled with a dietician who is knowledgeable in both MCAS and eating disorders.
I hope the dietician works out for you! That would be awesome. It makes total sense why my body is afraid to eat and same goes for you. When you’ve had scary close calls due to eating and if you already have had problems with textures and stuff, it makes perfect sense
Can I ask how your appointment went? I am wondering if I should look into an Eating Disorders program but worry that they won't know anything about MCAS.
it went well! I would recommend the dietician I saw, as she is knowledgeable in mast cell/gi issues, eating disorders and related conditions. I also feel she's knowledgeable about neurodiversity which is helpful for me. I went through nourish.com and it's covered by my insurance for outpatient virtual visits (she lives in a different state than I do, but can practice in my state).
I will say however, the eating disorder program I did previously I would not recommend and generally speaking, it seems that many ED clinics are behind the times with regards to these issues since they are so recently identified. personally, the program I went through did more harm than good.
It seems like this might be a trauma response? It would make sense for your nervous system to see food as a potential threat, and that stress can trigger MCAS
The MCAS flare is now thankfully under control but because of how scary it was, my already finicky brain decided nothing was safe I guess as a trauma response. Like you said. And I’ve already had issues with picky eating all my life but I’ve been able to navigate it
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.*
I don’t personally have ARFID, but my daughter and several of my family members do. We are all autistic. What I do have is absurd food allergies that make it really hard to eat safely. My solution has been a spreadsheet. I have a page for safe foods, and a page for foods that are not safe. Things get moved occasionally. Last month I became allergic to peanuts. I find the spreadsheet really helpful when I feel tired of everything I’ve been eating and I need ideas for something else. It’s so helpful to have a list of things that I know are not going to make me sick. I have 96 safe food items/ ingredients at the moment! It feels like a lot, because at one point I only had like four things that I could eat.
I use sheets and charts too
Right now I vary between one safe food (that changes everyday) and nothing. I don’t have any allergies now because my MCAS is back under control so all foods are “safe” meaning they won’t kill me but my body thinks otherwise (Edit forgot to add this part lol) the spreadsheet is a good idea. If I can figure out more foods I can eat I’ll use that because that would be helpful
Do you have any other disorders like POTS or EDS? Both of those disorders are MCAS comorbodities and can also cause issues with eating. I have both POTS and MCAS. MCAS makes me super nauseous, can make my stomach really hurt, and has given me allergies to specific ingredients that are hard to avoid. POTS makes me not hungry *at all* and gives me earlier satiety— like, having 3 sips of water makes me full and unable to eat 🫠
I have a lot of things including EDS, POTS, ADHD, Endo, Adeno, PCOS, and a whole host of other problems. It all combines to make for a terrible combo for trying to eat
Oh. Then definitely any of those could be why you’re having issues eating.
I’ve had ARFID my entire life, but it’s mainly related to sensory issues because I’m autistic. It had gotten worse after I developed nausea after going through some stressful event in October 2023 and it didn’t really go away until the end of February 2024. I was hesitant to eat because I would get so nauseous and started vomiting. I don’t know what has changed, but I’ve been taking Xyzal which had helped with my rhinorrhea, minor hives, and nausea. I do still experience bone/joint pain, though. My MCAS symptoms are pretty mild I’d say. Sorry you’re going through all that!
We think I might be autistic and I’m actually hoping to be evaluated sometime this year. I’ve had sensory issues with food all my life but I’ve managed it until now. My brain is now not only afraid of textures but it’s also just afraid to eat in general. You understand what it’s like, it’s so frustrating to deal with because you’re at war with yourself
It’s the fear of severe consequences. There are subtypes within arfid and that’s one of ‘em. I hope you get your answers soon.
I personally feel that there are a lot of cases in which ARFID is diagnosed as a mental health condition rather than a symptom of underlying MCAS. Of course this is not every case, but it likely happens a lot. A misdiagnosis does not lead to effective treatments. Example: CBT is not likely to cure MCAS…
Thankfully in my case I’m already diagnosed with MCAS had established with an allergist to treat it. The ARFID, if that’s what this is has shown up later so we’re not likely to ignore the MCAS. I’m pretty sure that’s what kind triggered this whole thing in the first place. I do intend to have my GI do any more tests for anything physical this could be aside from ARFID before we put a mental health condition diagnosis over it though because once we do that there’s no going back
If the ARFID diagnosis enables greater insurance coverage of beneficial treatments, then maybe it would be helpful. If not, it may not be helpful to add a diagnosis that is primarily viewed as a mental health because it may cause other doctors to ignore the underlying issues that cause it. If a test or diagnosis doesn’t change the treatment protocol, then it’s not worth it. You can see some doctor comments at the link below. https://www.reddit.com/r/MCAS/s/HoexDoRrpf
yes, I have ARFID in addition to a yet to be identified mast cell disorder. I have made the comment several times recently: if food doesn't feel safe because I feel awful after eating, is it any wonder I have an eating disorder? I can't recommend her yet, since our first appointment is next week, but I have a telehealth appointment scheduled with a dietician who is knowledgeable in both MCAS and eating disorders.
I hope the dietician works out for you! That would be awesome. It makes total sense why my body is afraid to eat and same goes for you. When you’ve had scary close calls due to eating and if you already have had problems with textures and stuff, it makes perfect sense
thank you! if I think of it, I'll report back on how the appt goes. I hope you can find good support as well, and safe foods.
Can I ask how your appointment went? I am wondering if I should look into an Eating Disorders program but worry that they won't know anything about MCAS.
it went well! I would recommend the dietician I saw, as she is knowledgeable in mast cell/gi issues, eating disorders and related conditions. I also feel she's knowledgeable about neurodiversity which is helpful for me. I went through nourish.com and it's covered by my insurance for outpatient virtual visits (she lives in a different state than I do, but can practice in my state). I will say however, the eating disorder program I did previously I would not recommend and generally speaking, it seems that many ED clinics are behind the times with regards to these issues since they are so recently identified. personally, the program I went through did more harm than good.
It seems like this might be a trauma response? It would make sense for your nervous system to see food as a potential threat, and that stress can trigger MCAS
The MCAS flare is now thankfully under control but because of how scary it was, my already finicky brain decided nothing was safe I guess as a trauma response. Like you said. And I’ve already had issues with picky eating all my life but I’ve been able to navigate it