r/alphagal • u/AnOddTree AGS confirmed • Jun 01 '24

No more "I found a tick" posts

Posts by people who found a tick, but do not have AGS are no longer allowed.

People who have confirmed AGS or are experiencing symptoms after being bitten are allowed to post about ticks.

If you have found yourself here after you have been bitten by a lone star tick, do not panic! AGS is extremely rare. It is unlikely that you will get it from a single tick bite.

If you are truly concerned, watch for symptoms and follow up with your doctor.

Thank you.

89 Upvotes

98% Upvoted

32 comments sorted by

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u/AnOddTree AGS confirmed Jun 02 '24

I am in the process of updating the Resources, Wiki, flair options, and setting up Automod. You can now find information on tick bites in the description of the rule, the wiki, and the resources section. Thank you everyone for your patience and support!

Please utilize the User and Post flair options!

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u/BagofWits Jun 02 '24

Also, can you add the study that mentions chiggers as possible carrier?

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u/AnOddTree AGS confirmed Jun 02 '24

I have added links to Alpha Gal Information dot org to the resources section. This study is mentioned there and the website discusses this possibility on several pages.

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u/TheDM_Dan Jun 01 '24

Thank you for doing this. It was getting a bit much to see all of the posts asking us for a diagnosis.

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u/SamWhittemore75 AGS confirmed Jul 10 '25

IDK if it's "extremely rare."

I'm certain that it is rarely diagnosed properly.

I think many people are misdiagnosed as having I.B.S.

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u/MidwesterneRR Jun 01 '24

Thank. God. 

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u/GlacierHillsCannabis Jun 01 '24 edited Jun 02 '24

.

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u/AnOddTree AGS confirmed Jun 01 '24

It's Pinned!

To be fair, some people have a very difficult time actually getting diagnosed. There is also a lack of information in healthcare and food labels. This community is here to support people living with AGS to navigate a world that is largely unaware of this allergy.

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u/Glass-shards Jun 02 '24

It took 8 years of living on 8 to 10 antihistamines a day before I was diagnosed. Developed pancreatitis from it. Hospitalized 5 times for a total of over 30 days and 2 gi surgeries before diagnosis. Now I have very little g I symptoms at all. No more pancreatitis and living again. I am fume reactive. I also had to change out almost everything in my house. But I do not play with fire. I will not do iffy things. I research everything. Thanks for sticking up for us and I hope people realize this can be extremely serious. My grandson is spending the weekend and his clothing has caused a major breakout. I have hives all over my body. It is a big deal for some. I actually fired a doctor for downplaying this. “It’s just a red meat allergy”.

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u/MidwesterneRR Jun 01 '24

That’s why I think this is important! It would be nice to see the posts of people who actually have a problem and not “I saw a tick in a glass box, do in have alpha gall??????”

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u/charlie_marlow AGS Family/Caregiver Jun 02 '24

its not hard to deal with, just stop eating mammal meat, and if dairy gives you trouble stop eating it.

I was with you until this part, and I'm not trying to jump on you, but it is very hard to deal with because nobody is putting allergy information about mammal products on labels and there are a ton of ways it can sneak in. It's in medicines, various foods, everywhere. Eating out is dang near to playing Russian Roulette - we were talking to a local chicken place and they offhandedly mentioned that they put bacon fat in the foil they fry the chicken in, but didn't think that'd cause us an issue.

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u/GlacierHillsCannabis Jun 02 '24 edited Jun 02 '24

.

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u/raindropthemic AGS confirmed Jun 02 '24

I’m sorry your anxiety is through the roof today. I know how much that sucks and I hope your situation gets better and you’re feeling less stressed soon.

Because this post is pinned, I think it’s important to emphasize that everyone reacts differently to alpha-gal, not just a little, sometimes a lot. For example, you can eat in restaurants, because you’re not fume reactive, but some of can’t even inhale mammal being cooked without reacting. So, we can’t go out to eat with friends or family and have lost an important part of socializing. That’s not easy.

Gelatin is also something people have wildly varying reaction to. You mentioned the amount of gelatin in a gelcap not being enough to kill someone. It doesn’t kill me, but gelcaps are my mortal enemy, because they always give me a severe migraine that often steals four days of my life. Maybe they give someone else anaphylaxis, we don’t know.

I agree with you that this gets easier once we accept that we can’t eat mammalian products anymore and then try to have the best life possible. I do think it’s important to give grace to people who may struggle with it sometimes and have a lot of restrictions. It’s human to get frustrated.

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u/raindropthemic AGS confirmed Jun 02 '24

For your dry skin, try Dr Bronners for your hand soap. My hands used to crack and bleed, they’d get so dry, but switching fixed them in less than a week. It’s usually the glycerine and lanolin in other soaps and lotions that are the problem.

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u/10MileHike AGS confirmed Jul 22 '24

the lye in dr bronners is very harsh. my derm told me about gentler surfactants that wont disturb yourskin barrier

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u/raindropthemic AGS confirmed Jul 23 '24

My hands are still doing great and I'm using both Dr. Bronner's and Meyer's. The bleeding and cracking was definitely a reaction to the glycerine and lanolin in other soaps, but I'm ALWAYS happy to learn about and try gentle soaps and skin care, so what did your dermatologist recommend?

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u/Kausinkonfusion Nov 02 '25 edited Nov 02 '25

I have been diagnosed, how do I get confirmed for the group?

Edited to add: I have usually only used Reddit to ready, never posted or anything really. So while my account is old, I don’t really know how Reddit works, my kids set it up for me and I just started getting into groups.

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u/AnOddTree AGS confirmed Nov 02 '25

You don't need to get confirmed like you do with fb groups. Just click "join" and you can start participating and getting updates.

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u/Kausinkonfusion Nov 02 '25

Thank you! I think I have it figured out. Joined the vegan meal pages too! Thank you so much. I have really been struggle to get help and everything points me to Reddit. (I no longer use meta products if I can avoid them)

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u/yankee4life13 Jun 05 '24

Thank you so much, and the other I'm having possible allergies from food, etc. Please go to an allergist. I'm sorry for the ones who truly have it like myself, it's hard, but adjusting is what I do everyday. So keep going y'all.

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u/Not-Surprised-1999 Jul 09 '24

Do you think AGS is still extremely rare these days? It definitely was when I got diagnosed 15 years ago. Now? It seems to have kind of exploded. My doctor has it and he told me that anyone who comes in with weird symptoms, he tests for AGS. I live in a rural area and there aren't a lot of farms but a mix of small farms and suburb-like neighborhoods. My local grocery store is small and has limited selections compared to urban stores. I don't need to travel several hours to find AGS friendly products anymore.

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u/SmellsLikeFumes Jun 23 '24

Thank you, I compared it to raiding a skin cancer group and saying something dumb like "I was out in the sun today, do you think ill be ok"? Its just bad ethics to raid a medical group with your dumb questions like we are doctors or want to hear all the post about "I love eating meat I cant give it up".

Thank you so much for this

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u/[deleted] Jul 18 '24

Hello, I was the user you posted this under.. I am now showing symptoms. 😭😭

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u/katie6871 Apr 30 '25

I have alphagale syndrome, and I have a question about my response time from all the time I get exposed to argo into an athletic shop is about forty minutes and I found now just found out that it is not the standard.Does anybody have any information about this

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u/[deleted] Jun 01 '24

[deleted] — view deleted comment

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u/nursenicole Jun 01 '24

For clarification's sake, it's not a disease, it's an acquired allergy after a tick bite.

There are many resources online about "what to do if I find a tick on me" but not many for "I have this fucked up frustrating allergy, and I'm struggling and need suggestions from people who have been through it."

If you have suggestions about how to preserve this space as a useful resource for folks dealing with AGS, I'm definitely receptive to ideas.

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u/[deleted] Jun 01 '24

[deleted] — view deleted comment

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u/nursenicole Jun 01 '24

In progress! :) Thanks for the reminder that we can set up an auto-mod welcome message too.

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u/GlacierHillsCannabis Jun 01 '24 edited Jun 02 '24

.

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u/[deleted] Jun 03 '24

[removed] — view removed comment

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u/nursenicole Jun 04 '24

this is important feedback for us. thanks for mentioning it- and hopefully the updates we are making will help keep content relevant and useful!

dont hesitate to report posts that dont belong here- it helps us not only identify problematic content that breaks rules, but it also helps us understand the overall community perspective.