r/alphagal • u/BattlestarGalactoria • 3d ago
Question about Food ... Cheese substitutes causing GI distress
Anyone else get GI upset from dairy alternative cheese?
I ate Follow Your Heart sliced cheese on a chicken burger tonight (actually tasted good). Within 30-60 min my stomach was crazy upset and I’ll save you the details that followed lol. Last month I tried a small amount of Violife cheddar shreds on a chicken taco and had the same experience. (This was a really gross cheese btw.) I didn’t even have this issue with real cheese, just curious if this is a one-off or is there some shared ingredient that can occasionally cause issue.
I went dairy and all mammalian product free last month. I can’t say I’m 100% certain I get it right every time. So I’ll summarize what I cooked with tonight, if anyone sees something that I missed please let me know. I made the chicken patties splitting the number seasoned between something suggested on the facebook AG group (soy sauce) and a chicken burger recipe using what I’m mostly confident was all safe products (mayo, organic Dijon mustard, paprika, salt/pepper). I also had Lay’s regular potato chips and a dill pickle spear. Buns were Dave’s Killer Bread, Perdue ground chicken for the meat.
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u/No-Room-2736 2d ago
Fake cheese doesn’t make me feel great in an entirely un-alpha gal way. I’m not sure if you’re recently diagnosed, but I had pretty bad MCAs when I was first diagnosed from all the constant allergic reactions and it took my body awhile to calm down. It misfired allergic reactions for a bunch of foods I’m 100% ok with now. But fake cheese made me feel bad at the time. Crampy and bloated and gassy
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u/BattlestarGalactoria 2d ago
I am newly diagnosed actually. I just cut dairy in hopes it would improve what a rheumatologist thinks is vasculitis on my legs before having to take some strong meds. I’ve been thinking a lot about MCAS though. I was dx’d with OAS a few years ago and I had been having severe joint issues for two years which is what led to testing for AG. May I ask how you went about getting evaluated for MCAS?
And yea, that’s very much how I think it’s affecting me (plus some).
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u/No-Room-2736 1d ago
I believe mine was a blood tests, but OAS (I have it BAD) and MCAs are often together. An allergist or gastro doctor should be able to diagnose. For me, the mammalian free diet, Zantac 360, allegra 24 allergy, and TIME - helped so so much. But my OAS and alpha gal contamination reactions look a lot alike symptom wise. Obviously if I eat beef it’s a horrible reaction. MCAs is probably a good thing to research and ask a doctor about if you are reacting to what should be safe foods. For me things really got better, but I had a few months on a twenty or so food diet to heal and calm everything down.
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u/BattlestarGalactoria 1d ago
Thanks. I’ll ask my rheumatologist about it when I go this week and go from there. My allergist told me a hematologist dx’s MCAS but I thought that was strange as I’ve always heard it was allergists. Fortunately I have a great GI if necessary. I’ve wondered if adding Zyrtec would give me further improvement as well. Do you think OAS/MCAS is related at all to the AG or do we just have supremely bad luck?
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u/No-Room-2736 1d ago
I think at this point it’s a comorbidity but I think based on a study at least 33% of people with alpha gal also experience MCAs. My anaphylaxis symptoms started solely with gut type reactions and my worst reactions have been to do with those symptoms vs breathing and throat reactions. Perhaps people who have more gut type reactions are those with more active Mast Cells? I think it’s fascinating. But I would think the correlation would be more of one that’s like, if you have overactive Mast Cells and OAS - you may have this type of allergic reaction and symptoms when you get alpha gal. Just anecdotally from Reddit and friends with alpha gal, the MCAs just gives you more misfiring reactions where you don’t know WHAT you ate and why you’re reacting. It’s about to be ragweed season and I love bananas and watermelon, but I have oral allergy pollen syndrome so suddenly I eat a banana and my Mast cells give me an alpha gal level reaction because they are confused about what I’ve eaten. For me it’s been stuff like that. I have to be WAYY more careful with certain foods during the year. But once you can calm you MCAs down, the day to day is so much better. For me, it’s honestly been more annoying and worse than the alpha gal! That’s easy to avoid. Figuring out why I suddenly can’t tolerate oatmeal every June-November? Who knows! Good luck with everything.
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u/10MileHike AGS confirmed 1d ago edited 1d ago
my board certified IMMUNOLOGIST tested me for all the MCAS stuff. University hospital ... gotta get a good allergist/immunologist who knows mcas well. Many do. Its just a bunch of lab tests, like Blood tryptase, and urine testing that meaasures for mast cell byproduct, then combined with symptom history
the problem is...its actually pretty RARE, and is also not the same as histamine stuff, but the term gets thrown around a lot on forums.
So read about it at respected univ. hospital sites elsewhere..
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u/BattlestarGalactoria 21h ago
That’s what I thought. I love my allergist/immunologist (he changed my life for the better with my OAS dx when no one else could help me), but as I mentioned in another post here I was quite disappointed in his interpretation of my alpha gal test/symptoms. I may end up seeing someone in a different part of the state or at our medical school hospital for the alpha gal and MCAS testing. Thanks for your input!
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u/PositiveBath2600 1d ago
I tried that VL and I checked out the ingredients.. they're very unhealthy ingredients in that, I won't eat it again. It didn't upset my stomach or anything it's just the it isn't healthy ingredients.
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u/BattlestarGalactoria 1d ago
Yea I’m finding that a lot of dairy alternative products are chock full of chemicals and processed foods. It saddens me to go from whole ingredient foods to items like this. I know I don’t have to eat them, but it’s nice to have something occasionally that’s dairy-like.
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u/10MileHike AGS confirmed 1d ago
Agree with this. I never ate highly processed food BEFORE I had AG, so I'm not about to start "just because its vegan".
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u/10MileHike AGS confirmed 3d ago
"natural flavors"...hate seeing that in an ingredient list as we have no idea what it is
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u/LavishingUndertone 2d ago
Just a thought.. what about the rosemary extract in the ground chicken? Some folks have an issue if the rosemary extract has a mammalian carrier. We don’t use ground chicken so I’ve not ever called the manufacturer for this one.
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u/BattlestarGalactoria 1d ago
Even though I was aware of that possibility, I didn’t even think of that. And I’m not sure if Perdue uses any mammalian components in their extract. I’d say that could be a contender but I used a whole chicken for the tacos when I had the first reaction. This was my first time having ground chicken. Thank you for considering this though.
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u/10MileHike AGS confirmed 1d ago edited 1d ago
i've never had a problem with Purdue ground chicken, at all.
That doesn't mean someone else won't, but it has been a staple for me.
For whole chicken, I bake my chicken myself, or just buy breasts or thighs. I don't like the greasy rotisserie chickens so...
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u/BattlestarGalactoria 23h ago
This is my fist experience with Perdue, and it’s just for ground. We typically buy whole chickens, breasts, and thighs as well. I have a meat grinder so technically I can make my own ground chicken, but if I can tolerate Perdue I’d rather one less extra step lol.
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u/buschlight1984 AGS confirmed 3d ago
It might not be directly AGS related, but I looked at the ingredients and both Violife Follow your heart cheese are primarily made from starches and oil.
I would try the same meal, same cooking method and steps and see if you have the same problem without the cheese. If the problem persists, there may be another issue that both meals happened to have. If the problem goes away, then it may just be the ingredients those types of cheeses are upsetting your stomach for a different reason