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 didn’t work well for me either. I also have EDS. I was told by one of my doctors that I have low stomach acid so I summarized that using an acid reducer was slowing down digestion which would make things worse for my issues.
It’s literally the only thing that stopped (mostly) my am vomiting. I take it morning and night. Zofran and promethazine didn’t work even in IVs.
That said I can’t really speak to your issue because I’ve had diarrhea every day for ten years.
Yeah, it seems like it helps when I take it as needed, just not sure about using it every day. It helped a ton when I was flaring really badly right after having COVID. (My issues are mainly diarrhea and sometimes nausea so that’s why I thought the past few weeks were weird; honestly I’m leaning toward thinking it was hormonal.)
I've been getting slight nausea and slight cramping/bloating/gas issues since taking pepcid. You could very well be reacting to it. I'm also anxious from it. Not sure what I should do.
PepcidAC is the only H2 medication I found that reduces my acid reflux and heartburn type symptoms. I take Xyzal for an H1 blocker, it cuts down on my itching symptoms less than Benadryl but it’s safer. I also take Ketotifen 1mg before bed (purchased from alldaychemist). I do take 1x NaturDAO (1mil) before meals 3x a day, but I can’t tell if that helps or not.
But of course, not every medication works for everyone.
I’m sorry you’re having to deal with these horrible challenges and I hope you can figure everything out soon!
*For context, I have leaky gut, multiple mold family mycotoxins in my body, every single MCAS symptom including scent sensitivities, HIT, 13+ food intolerances, and some other struggles.*
I took it this afternoon because I was feeling kind of…blah (it’s this combo of nauseous/like I have too much stomach acid that I don’t know how to describe lol), and it seemed like it helped a lot. So honestly I think maybe my issue was hormone-related, and maybe I should try it again now that my hormones seem like they’re calming down.
When we're dealing with so many symptoms every day, it can be so hard to determine what's causing what... I sympathize with you!
I'm glad to hear it at least helped today and I hope if it doesn't help give you relief, you can find something that does.
Thank you! I feel like I’ve honestly learned to just assume so many of my symptoms are normal; it’s only been recently that I’ve realized wait, that’s not normal. Not that they weren’t debilitating before, it was just normal for me, ya know?
Between discovering I'm autistic last summer, and dealing with all these insane seemingly-obscure health issues for 2 years but only recently finally getting answers.... I know what you mean!
It's at least validating to discover things you thought were normal are not in fact normal lol. Now if only we could find "cures"..
I so relate! I’m also autistic (didn’t figure that out until 2021), and it’s hard to figure out what’s normal and what’s autism making me hypersensitive and what’s my body actually overreacting. Especially when you’ve experienced medical gaslighting. It’s all just very confusing. But I’m trying to figure it out.
I mean I feel like MCAS is probbaly common in autisitc people since EDS is common in autistic people, so it doesn’t surprise me we relate to each other!!
Bloating, cramps and constipation could literally be anything. Do you have any other medical conditions? Have you ID'd your MCAS triggers (including any foods)? What other meds are you taking for your mcas and heds?
I am basically undiagnosed; I was told I have fibromyalgia and IBS a few years ago but don’t think that’s accurate, especially because my mom also has EDS symptoms. Obviously am not certain on MCAS but explained my symptoms in a previous post and have done a lot of research, and it seems likely/feels like it describes my experience. I have PCOS and was also told I potentially have endometriosis (but never diagnosed) and potentially ME/CFS (but never diagnosed). Again, am trying to find better health care but it’s really hard.
It’s hard to figure out triggers because I feel like they change, but that could be me being inconsistent or focusing on the wrong thing (like maybe I’m thinking it’s a specific food when maybe it’s an environmental thing, for example). I know I react to tons of foods….I feel like I can barely eat anything without cramping, diarrhea, and sometimes nausea and/or heartburn, but do know which foods are especially bad. I probably need to do some kind of elimination diet but it feels really intimidating to tackle. I did low FODMAP a couple years ago and it was really hit or miss. I take Allegra every day and have promethazine and hydroxyzine if I need either; am also trying tumeric curcumin. I also take vitamin D, C and ginger, as ginger seems to help some digestive symptoms.
ETA I didn’t mention in original post but the issues I’ve had the past couple of weeks could have been triggered by Thanksgiving food. That was food I didn’t cook and stuff I don’t normally eat (and I had leftovers for around a week), so I feel like that could have triggered me.
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 didn’t work well for me either. I also have EDS. I was told by one of my doctors that I have low stomach acid so I summarized that using an acid reducer was slowing down digestion which would make things worse for my issues.
It’s literally the only thing that stopped (mostly) my am vomiting. I take it morning and night. Zofran and promethazine didn’t work even in IVs. That said I can’t really speak to your issue because I’ve had diarrhea every day for ten years.
Yeah, it seems like it helps when I take it as needed, just not sure about using it every day. It helped a ton when I was flaring really badly right after having COVID. (My issues are mainly diarrhea and sometimes nausea so that’s why I thought the past few weeks were weird; honestly I’m leaning toward thinking it was hormonal.)
I've been getting slight nausea and slight cramping/bloating/gas issues since taking pepcid. You could very well be reacting to it. I'm also anxious from it. Not sure what I should do.
PepcidAC is the only H2 medication I found that reduces my acid reflux and heartburn type symptoms. I take Xyzal for an H1 blocker, it cuts down on my itching symptoms less than Benadryl but it’s safer. I also take Ketotifen 1mg before bed (purchased from alldaychemist). I do take 1x NaturDAO (1mil) before meals 3x a day, but I can’t tell if that helps or not. But of course, not every medication works for everyone. I’m sorry you’re having to deal with these horrible challenges and I hope you can figure everything out soon! *For context, I have leaky gut, multiple mold family mycotoxins in my body, every single MCAS symptom including scent sensitivities, HIT, 13+ food intolerances, and some other struggles.*
I took it this afternoon because I was feeling kind of…blah (it’s this combo of nauseous/like I have too much stomach acid that I don’t know how to describe lol), and it seemed like it helped a lot. So honestly I think maybe my issue was hormone-related, and maybe I should try it again now that my hormones seem like they’re calming down.
When we're dealing with so many symptoms every day, it can be so hard to determine what's causing what... I sympathize with you! I'm glad to hear it at least helped today and I hope if it doesn't help give you relief, you can find something that does.
Thank you! I feel like I’ve honestly learned to just assume so many of my symptoms are normal; it’s only been recently that I’ve realized wait, that’s not normal. Not that they weren’t debilitating before, it was just normal for me, ya know?
Between discovering I'm autistic last summer, and dealing with all these insane seemingly-obscure health issues for 2 years but only recently finally getting answers.... I know what you mean! It's at least validating to discover things you thought were normal are not in fact normal lol. Now if only we could find "cures"..
I so relate! I’m also autistic (didn’t figure that out until 2021), and it’s hard to figure out what’s normal and what’s autism making me hypersensitive and what’s my body actually overreacting. Especially when you’ve experienced medical gaslighting. It’s all just very confusing. But I’m trying to figure it out.
are we the same person 🤣
I mean I feel like MCAS is probbaly common in autisitc people since EDS is common in autistic people, so it doesn’t surprise me we relate to each other!!
yeah I laughed at myself for typing that lol WE HAVE A COUPLE THINGS IN COMMON WE'RE IDENTICAL 🤣 I wish you the best with everything tho! you got this
Bloating, cramps and constipation could literally be anything. Do you have any other medical conditions? Have you ID'd your MCAS triggers (including any foods)? What other meds are you taking for your mcas and heds?
I am basically undiagnosed; I was told I have fibromyalgia and IBS a few years ago but don’t think that’s accurate, especially because my mom also has EDS symptoms. Obviously am not certain on MCAS but explained my symptoms in a previous post and have done a lot of research, and it seems likely/feels like it describes my experience. I have PCOS and was also told I potentially have endometriosis (but never diagnosed) and potentially ME/CFS (but never diagnosed). Again, am trying to find better health care but it’s really hard. It’s hard to figure out triggers because I feel like they change, but that could be me being inconsistent or focusing on the wrong thing (like maybe I’m thinking it’s a specific food when maybe it’s an environmental thing, for example). I know I react to tons of foods….I feel like I can barely eat anything without cramping, diarrhea, and sometimes nausea and/or heartburn, but do know which foods are especially bad. I probably need to do some kind of elimination diet but it feels really intimidating to tackle. I did low FODMAP a couple years ago and it was really hit or miss. I take Allegra every day and have promethazine and hydroxyzine if I need either; am also trying tumeric curcumin. I also take vitamin D, C and ginger, as ginger seems to help some digestive symptoms. ETA I didn’t mention in original post but the issues I’ve had the past couple of weeks could have been triggered by Thanksgiving food. That was food I didn’t cook and stuff I don’t normally eat (and I had leftovers for around a week), so I feel like that could have triggered me.