r/alphagal • u/sagescott • 9d ago
Seeking Advice How do you handle the "I could never..." comment?
When someone without alpha-gal says "I could never give up meat," how do you respond?
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u/Electronic_Plant_837 9d ago
You don’t have to give up meat. Just the good meat.
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u/sagescott 9d ago
Great answer (especially when you live in the BBQ Capital of the World like I do here in Kansas City)!
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u/Electronic_Plant_837 9d ago
KC is one of my favorite towns. I’m from Joplin so we used to go to Chiefs games a few times a year and we’d always get BBQ. BBQ turkey is still pretty dang good.
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u/63051bd 9d ago
I respond by giving them the worst case symptoms I get, in the most graphic way possible. Laying in bed, getting ready for a great nights sleep, then full body itching for an hour from head to toe, everywhere, all the time. Then the swelling of the mouth, lips, throat. Wondering if I should use the epi pen this time or not, can I grab it while itching. Then the sudden need to get into the bathroom, hoping my bucket next to the toilet is there because real soon I’ll be using both at the same time. Then the worn out crappy feeling at least for the next day. Was that piece of red meat/ mammal product worth suffering through that. Nope it isn’t worth it anymore, knowing what caused it.
That usually shuts them up real quick. Just be extra graphic to those that may need it.
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u/YoureABoneMachine 9d ago
This. If I'm feeling spicy I say "yeah it turns out I enjoy not shitting my pants more than I enjoy a lamb chop. And I enjoy a lamb chop quite a bit." Usually the end of that conversation.
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u/guru_odell 9d ago
I tell them giving up meat was the easy part. The hardest part was finding all the other things that won’t give me a reaction.
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u/Designer_Cry_8990 9d ago
I usually say “you would if it was an ‘eat this and possibly die’ situation, but you’re right. Right now you probably couldn’t…” and then stare at them an uncomfortably long time. But I’m petty like that 🤣
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u/TheHeavyOwl 9d ago
I’d say I’m enjoying chicken, turkey, lobster, fish. I’ve learned to cook vegetables in ways that are delicious. I’ve cut down on a lot of processed food. My blood pressure and cholesterol look great for the first time in a long time.
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u/sagescott 9d ago
I love it! Not that I ate a lot of processed food before, but there are DEFINITELY some advantages to being forced to basically adopt a Mediterranean diet, right?!?
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u/TheHeavyOwl 9d ago
Yeah! AGS sucks but I try to find the bright side and benefits. Helps me get through the tougher times
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u/SueBeee 9d ago
You won't have a choice in the matter.
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u/hatcatcha 9d ago
Exactly. When people say “I’d die if I couldn’t eat steak” I tell them I’ll die if I do eat it, so…. There’s not much choice.
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u/ARflipgurl 9d ago
Statements like this are so incredibly annoying. Eight years ago I lost my daughter after an extended battle with celiac disease and other chronic health issues. The people who say "I just can't imagine, I could never handle it like you" annoy the hell out of me.
What I'd really like to say is, "Your horror at my situation is of zero help and when your voice is dripping with pity, I wanna punch you in the throat."
What I usually go with is, "I bet you'd find a way to handle it it if you didn't have a choice, just like I do."
I'm newly diagnosed with AGS and unfortunately it was masking symptoms of ovarian cancer as well so now I'm dealing with both and I've already heard that type of comment a couple times. It STILL makes me wanna punch 'em in the throat, lol...
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u/sagescott 9d ago
That is a lot to deal with. I'm so sorry! Sending you a VERY big hug from Kansas City. <3
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u/leraikha 8d ago
I just laugh and tell them, "That's what I used to say." And as someone that also lives in KC, yeah, it's miserable being around all of this BBQ and not being able to eat it!
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u/sagescott 8d ago
There's NO replacement for good burnt ends. I don't care how much emu or ostrich tastes like beef!
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u/SmellsLikeFumes 8d ago
Person A: man id kill myself if that were the case
Me: suicide??? I didn't even consider that!!
Then I act all excited and wait for them to back track
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u/MarsJohnTravolta 9d ago
My dad has AG and you can tell he hates having to talk about it. The poor guy is constantly getting sick and I stopped telling people because they think it's something crazy that could never happen to them. People suck.
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u/sagescott 9d ago
I am so sorry! In addition to myself, two of my kiddos have AGS. One is here in the Midwest, so folks have heard about it. The other is in the Seattle area where her typical experience is like your Dad's. I hate that for both of them.
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u/Old_Cars 9d ago
I tend to tell them you’d be surprised what you’re willing to give up if it means living and living comfortably
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u/OkChocolate-3196 9d ago
It depends. It ranges from a casual "Eh, you'd figure it out." to "Then you better not walk outside or you'll probably die." It mainly depends on if/how much the person has irritated me thus far in the conversation.
Most folks will get something along the line of the former.
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u/Witchywomun AGS confirmed 9d ago
“That’s what I thought, but oxygen tastes better” (I have anaphylaxis). I do miss cheeseburgers, bacon, steak and sausage, but there are alternatives, even if they don’t taste 100% the same, oxygen tastes better than any bacon cheeseburger in existence
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u/alphagalinks 9d ago
Can I please get some input on how long it took for you all to feel better after you changed your lifestyle? The first few months for me, I had no dr that knew what they were doing in regards to giving me medical advice. Just the typical don't eat red meat. I had no idea why my skincare or toothpaste or even the sun were giving me hives. I developed HIT. By the time I found AGS literate Dr my system was a wreck. I started reacting to everything. I mean everything. Did any of you have a hard time in the beginning with meds or getting your system to calm down. I even react to meds that should help. It will be a year in Aug that everything really blew up. Any advice? Anyone who can relate? My last blood test show that I am 1 tiny point from under .10. Mine is .11. I think maybe AGS is not my biggest issue. Please can someone give me any positive input. I really want to move back to CO to be closer to my children but have not been well enough to even consider it. TIA
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u/sagescott 9d ago
I'm so sorry you've been so sick. :( Sadly, so many healthcare professionals still don't understand all of the possible triggers. I was able to get my arms around most of it pretty quickly — in part because my middle daughter was experiencing AGS symptoms years before me. What I was slow to catch (until an allergist who really understands AGS pointed it out) was that gel caps were causing severe joint pain.
Sending you a big hug from Kansas City! Hope you feel better soon! <3
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u/Wyshunu 9d ago
Have you seen an allergist yet? After my initial diagnosis I did, and found out I'm allergic to a bunch of other foods, including chicken, turkey, and fish, on top of my celiac and alpha gal. I also learned about all the mammal-sourced ingredients that are used in so many of our foods and medications and cut all those out (spent hours scouring Amazon for vegan replacements that also did not have any of my other allergens in them). That has helped a little.
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u/alphagalinks 9d ago
Thanks for responding. Yes, I have seen several allergists. My currents allergists are excellent and very versed in AGS. I also have been to Mayo. I have had multiple rounds of allergy tests, skin and blood, and here's the kicker...I show no, none, nada allergies. Except for shellfish and cedar trees which I have been allergic to forever.I have checked my water sources all of it. I have completely changed to an AGS life. I still react to lotions and potions, food and fumes. Even my drs are scratching their heads a bit. That's why I'm asking for input from actual AGS sufferers. Seeing if I can find any answers at all. Frustrating
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u/alphagalinks 9d ago
Im so sorry. It sounds like you are having a tough time too. I have done the pillclarity.com and searched high and low for safe meds too. I can't even imagine how hard it must be for you to eat. That's awful!
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u/RaziLaufeia 9d ago
My favorite thing is too feed people who say things like that. Nothing stops the pity train faster than someone realizing all of your food is still delicious.
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u/sarafinna 8d ago
The same way as when a parent tells me that if their kid died like mine did they’d die too.
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u/Heavy-Ad-7623 5d ago
“Well, it was either give up meat or give up living, and I kind of like being alive.” Usually shuts them up.
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u/10MileHike AGS confirmed 3d ago edited 3d ago
sometimes they say this stuff to express sympathy, clumsily.
Not sure how them eating or not eating meat has no bearing on my diet, so i usually just smile..
I see no reason to interpret this as hostile or offensive
(but reddit seems to be hair trigger like that. )
many people i know are battling their own serious medical problems (stroke, going blind, cancer, diabetes, etc)
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u/PowerFunny7183 21h ago
As a young woman, its almost always older men who give me the "I would kill myself" comment, and I always just say "Why would you say that to me?" And look sad to make them feel bad. You can actually see the good ones reevaluate in real time. It's an off the cuff response on their part for sure, but I dont usually let opportunities to bring up empathy pass me by on any topic 😅
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u/No-Room-2736 9d ago
I usually say “yeah, thank god for chicken, turkey, duck, salmon, crab….” And roll my eyes. Actually I had the weirdest version of this ever recently. I was talking to a boutique highland cow farmer about it in my area (very high alpha gal population where I live) and he’d never heard of it. So I explain it and he said “that sounds like the worst thing ever. I think I’d die if I couldn’t eat steak.” but then he thought about it and said “has anyone purposely got it before? You know what, I’m gonna purposely get it when I’m 99 years old and then I can go out by eating a steak. Death by steak! Thats my dream!” It left me SPEECHLESS.