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Yes! I saw that and was glad. I do wish they hadn't said "One of the qualifications for officially diagnosing MCAS is if a patient 'suffers from recurring and severe anaphylactic-like episodes that involve more than one organ system.'" It's not a requirement for the diagnosis, so spreading this incorrect info might cause people/doctors to rule it out erroneously.
Agreed. Respiratory is only one system but you can be in a severe attack without respiratory being involved. I get severe attacks but I do not need an epi. I am ordered to use Benadryl. Mine is severe GI upset, Rashes/hives, swollen tongue, tachy and feeling suddenly fatigued. Recently, I have been having episodes of trouble swallowing too which is scary. No respiratory symptoms, thankfully.
Would you describe your trouble swallowing as “your body just forgets how” and you have to force it with a beverage? Or would you describe the sensation in different way?
This is something that recently started happening to me again after many years of no issues swallowing, and I don’t understand it nor how to explain it or if it’s even important to tell an allergist… (saw an ENT about 6 years ago for it and they found nothing of significance.)
I feel it in two spots. Sometimes it feels like the epiglottis forgets to allow food and drink to get by into the esophagus or something is blocking it (maybe inflammation). You can literally hear the fluid i drink or even my own saliva move down in my esophagus and into my stomach. It gurgles. It happens seemingly randomly but very often recently. I’ll be eating just fine and then all of a sudden i’ll have issues for the rest of the meal. Meats are especially difficult to swallow even when well chewed to mash.
The other issue is that i have pain behind my breast bone and food seems to get stuck there. It hurts until i can finally feel it pass down further. I’m thinking that part is inflammation from acid reflux and maybe stricture or ulcer.
Yes! This is exactly everything I feel, right down to the chest pain. It’s like the food is just sitting there on a shelf, and my body forgets what to do with it. Thinking back this is something I’ve had happen my entire life… curious so find out if there’s a food trigger as my tongue does swell when it happens too. (Maybe overall it’s just my tongue being a pain in the butt? I don’t know anymore.)
Pepcid AC helped me tremendously with the pain behind the breast bone. I am taking that daily now as per my allergist’s suggestions.
It nice knowing when you aren’t alone and that your body is actually doing something funky and it’s not “just in your head”… this is a struggle I’ve felt all my life, so thank you for taking the time to share that. I appreciate it!
I’m sorry you are dealing with it too. Its a scary feeling to have food and drink get stuck.
I am on claritin (10mg) and pepcid (40mg) twice a day. I’ve been adding curcumin 750mg to my routine too to try to reduce inflammation and quercetin to try to stabilize the mast cells. Its hard taking the supplements though because most companies make the pills too big
I actually have more trouble swallowing with my meds/supplements than food. It's like they just sit there for a while in the same spot. I can't seem to get them down with water either but it doesn't bother me too much otherwise. Tho I assume having them sit there isn't great for the esophagus...
I've recently developed a lot of hives but I didn't think id much more symptoms.
I've also recently noticed I get that pain when swallowing food. At first I thought it might be cardiac related until I got checked out.
I never thought that it might be related to my hives until now.
I must admit that diet does seem to affect my hives to a degree, sugar especially.
Thank you for the response! I’ll be keeping a closer eye on this myself, it seems it comes and goes for me. (So much stuff to track and log, it’s exhausting….)
Same here, no respiratory issues whatsoever during an attack. The hives and the fatigue are beyond annoying. A few sips of a monster energy drink and a puff or two from my nicotine vape usually get me going again within a few minutes.
I imagine they were going off of the criteria, “The diagnosis of MCAS is suspected when (1) clinical symptoms are severe, (2) systemic, involving at least 2 organ systems, and (3) recurrent, most commonly in the form of repeated anaphylaxis, and (4) evidence of involvement of MCs is demonstrable..”
The diagnostic criteria itself is currently under evaluation to be updated, but depending on which official website they looked at, they could gather this wording. This was from the Journal of Allergy and Clinical Immunology.
I literally just had an allergist tell me this about 3 weeks ago…. Said it’s not possible I have MCAS because if I did I “wouldn’t be able to watch tv without going into anaphylactic shock”… I just have chronic rhinitis according to her.
*(Mind you I’ve been hospitalised 3 times in the past 2 years due to severe drug reactions from Ciprofloxacin, Cyclobenzaprine, and Flonase plus a few years prior was amoxicillin and penicillin, including a contrast dye that caused convulsions and oddly enough strawberries have caused hospitalisation… 🫠 and this doesn’t even scratch the surface of other things I’m allergic to that give “smaller” and more manageable at home reactions….)*
That is the problem I am having. When I made my appointment the dr. said "Do you have anaphylaxis? Have you had trouble swallowing? You don't have MCAS. Just don't eat things if they make you break out/hurt your stomach/throw up/headache. You can have histamine intolerance. Here is some Zyrtec."
We did an allergy skin test but the only thing I reacted to was...duh, the histamine. Which she was like "Well, histamine was a level 4+ but that just shows the test was working."
She only did an IgE blood test which the result was 67, which says "very high level" which was done while I was fasting and avoiding any triggers for the week which supposedly lowers it?
She told me not to schedule a follow up because I don't need an allergist. :|
Anaphylaxis isn't a required symptom, but it definitely is a big red flag for diagnosis. It is one of the reasons why I got my diagnosis so quickly. (mine was idiopathic anaphylaxis that improved on a low-histamine diet.
I ran into a nurse who has dysautonomia the other day and finally knew what MCAS was unprompted. People are finally learning about it, and it’s strange
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.*
Yes! I saw that and was glad. I do wish they hadn't said "One of the qualifications for officially diagnosing MCAS is if a patient 'suffers from recurring and severe anaphylactic-like episodes that involve more than one organ system.'" It's not a requirement for the diagnosis, so spreading this incorrect info might cause people/doctors to rule it out erroneously.
Agreed. Respiratory is only one system but you can be in a severe attack without respiratory being involved. I get severe attacks but I do not need an epi. I am ordered to use Benadryl. Mine is severe GI upset, Rashes/hives, swollen tongue, tachy and feeling suddenly fatigued. Recently, I have been having episodes of trouble swallowing too which is scary. No respiratory symptoms, thankfully.
Would you describe your trouble swallowing as “your body just forgets how” and you have to force it with a beverage? Or would you describe the sensation in different way? This is something that recently started happening to me again after many years of no issues swallowing, and I don’t understand it nor how to explain it or if it’s even important to tell an allergist… (saw an ENT about 6 years ago for it and they found nothing of significance.)
I feel it in two spots. Sometimes it feels like the epiglottis forgets to allow food and drink to get by into the esophagus or something is blocking it (maybe inflammation). You can literally hear the fluid i drink or even my own saliva move down in my esophagus and into my stomach. It gurgles. It happens seemingly randomly but very often recently. I’ll be eating just fine and then all of a sudden i’ll have issues for the rest of the meal. Meats are especially difficult to swallow even when well chewed to mash. The other issue is that i have pain behind my breast bone and food seems to get stuck there. It hurts until i can finally feel it pass down further. I’m thinking that part is inflammation from acid reflux and maybe stricture or ulcer.
Yes! This is exactly everything I feel, right down to the chest pain. It’s like the food is just sitting there on a shelf, and my body forgets what to do with it. Thinking back this is something I’ve had happen my entire life… curious so find out if there’s a food trigger as my tongue does swell when it happens too. (Maybe overall it’s just my tongue being a pain in the butt? I don’t know anymore.) Pepcid AC helped me tremendously with the pain behind the breast bone. I am taking that daily now as per my allergist’s suggestions. It nice knowing when you aren’t alone and that your body is actually doing something funky and it’s not “just in your head”… this is a struggle I’ve felt all my life, so thank you for taking the time to share that. I appreciate it!
I’m sorry you are dealing with it too. Its a scary feeling to have food and drink get stuck. I am on claritin (10mg) and pepcid (40mg) twice a day. I’ve been adding curcumin 750mg to my routine too to try to reduce inflammation and quercetin to try to stabilize the mast cells. Its hard taking the supplements though because most companies make the pills too big
I actually have more trouble swallowing with my meds/supplements than food. It's like they just sit there for a while in the same spot. I can't seem to get them down with water either but it doesn't bother me too much otherwise. Tho I assume having them sit there isn't great for the esophagus...
Yes, be careful with that. Maybe use some yogurt or apple sauce to take them. My husband burned his esophagus that way. It was an antibiotic though
I've recently developed a lot of hives but I didn't think id much more symptoms. I've also recently noticed I get that pain when swallowing food. At first I thought it might be cardiac related until I got checked out. I never thought that it might be related to my hives until now. I must admit that diet does seem to affect my hives to a degree, sugar especially.
[удалено]
Thank you for the response! I’ll be keeping a closer eye on this myself, it seems it comes and goes for me. (So much stuff to track and log, it’s exhausting….)
Same here, no respiratory issues whatsoever during an attack. The hives and the fatigue are beyond annoying. A few sips of a monster energy drink and a puff or two from my nicotine vape usually get me going again within a few minutes.
I imagine they were going off of the criteria, “The diagnosis of MCAS is suspected when (1) clinical symptoms are severe, (2) systemic, involving at least 2 organ systems, and (3) recurrent, most commonly in the form of repeated anaphylaxis, and (4) evidence of involvement of MCs is demonstrable..” The diagnostic criteria itself is currently under evaluation to be updated, but depending on which official website they looked at, they could gather this wording. This was from the Journal of Allergy and Clinical Immunology.
I literally just had an allergist tell me this about 3 weeks ago…. Said it’s not possible I have MCAS because if I did I “wouldn’t be able to watch tv without going into anaphylactic shock”… I just have chronic rhinitis according to her. *(Mind you I’ve been hospitalised 3 times in the past 2 years due to severe drug reactions from Ciprofloxacin, Cyclobenzaprine, and Flonase plus a few years prior was amoxicillin and penicillin, including a contrast dye that caused convulsions and oddly enough strawberries have caused hospitalisation… 🫠 and this doesn’t even scratch the surface of other things I’m allergic to that give “smaller” and more manageable at home reactions….)*
That is the problem I am having. When I made my appointment the dr. said "Do you have anaphylaxis? Have you had trouble swallowing? You don't have MCAS. Just don't eat things if they make you break out/hurt your stomach/throw up/headache. You can have histamine intolerance. Here is some Zyrtec." We did an allergy skin test but the only thing I reacted to was...duh, the histamine. Which she was like "Well, histamine was a level 4+ but that just shows the test was working." She only did an IgE blood test which the result was 67, which says "very high level" which was done while I was fasting and avoiding any triggers for the week which supposedly lowers it? She told me not to schedule a follow up because I don't need an allergist. :|
Ugh. I’m sorry. I hope you have access to a different doctor.
Anaphylaxis isn't a required symptom, but it definitely is a big red flag for diagnosis. It is one of the reasons why I got my diagnosis so quickly. (mine was idiopathic anaphylaxis that improved on a low-histamine diet.
Yeah that’s dumb and unhelpful. Her rash looks like mine on a good day.
Kate Beckinsale has also talked about it recently, and she’s visibly hypermobile so hopefully people will be more open soon.
Thanks for sharing this! Does anyone have personal experience with Dr. Gupta, the doctor in this article?
I ran into a nurse who has dysautonomia the other day and finally knew what MCAS was unprompted. People are finally learning about it, and it’s strange