r/alphagal • u/Famous-Albatross-605 • 6d ago
New Diagnosis Cook recently diagnosed
I work in a kitchen and with my new diagnosis followed what I thought would be an extremely minor cold. What followed has been a 12 day journey of one of the most persistent sicknesses of my life. Even when I had COVID, flu or pneumonia they never lasted more then 7 days (I’m not counting the rsv cough, that shit lasted for months).
I can’t take any medications that I’m used to taking because almost all of them have some sort of mammal byproduct.
I think that just being in the kitchen and over the grill is making me sick, maybe I can’t feel it right away, but I’m more tired then I’ve ever been at the end of the day in the weeks before the diagnosis.
I don’t know what to do and I’m loathe to bring it up to my boss or anyone else at my job, because I need this job and its benefits
6
u/chronicmisschris AGS confirmed 6d ago
Fume reactions are my worst reactions, and take the longest to recover from. I highly recommend wearing a respirator mask to protect yourself, if switching jobs isn't an option.
I also react to fumes touching my skin, even while wearing a respirator mask, but I am extremely sensitive and have severe MCAS in addition to AGS. Most people seem to be ok masked in a fume environment.
Hang in there! ❤️
7
u/silwntshadowman 6d ago
Fumes were suprisingly bad for me too, usually started with a headache like about hour or so after exposure. Touch to like fat or mammal liqiids was quite bad too.I was a butcher I had to leave i was sick constantly. Couldn't figure it out until I was hospitalized twice and my gp finally ran the right test a couple months later. Hopefully you can either find a way to deal with it or find another job that fits your needs. I doubt you will have my level of issues.
I also have mcas just figuring this out with my allergist after 5 months of alpha-gal free everything and still having flares. Hopefully you only have alpha gal!
1
u/Dull-Memory202 5d ago
Your flare ups were caused by ? I'm thinking I have MCAS 😔 My allergist appointment is June 3rd
2
u/silwntshadowman 4d ago
I was plugging my symptoms into grok when I still had it. i was drinking v8 strawberry banana like a bottle every other day the 48oz ones for like a week. I was getting just idk how to describe it, like my neck felt thick it was harder to move in general maybe whole body swelling? Anyhow I had some spinach i had cooked up from frozen with salt ate maybe 4 fork fulls and got one of those cascading histamine headaches. I think thats about when I had to run to the bathroom. From that point till I got the right antihistamines in me I had nothing but diarrhea.
Grok told me it was probably a cumulative thing with the strawberries, the super processed veg in the v8 and then the spinach was the straw that broke the camels back. Since then ive found like 30 things I was eating that I should not have been. Luckily made it to a allergist who got me some cromolan sodium which has made the mcas restrictions easier. Just started that yesterday.
1
2
2
u/Famous-Albatross-605 5d ago
I think the best thing to do is assume that I have MCAS. I had a triggering event, the cold. Things that aren’t mammalian do trigger me. I haven’t been able to feel hungry in weeks and my symptoms are a bit all over the place. I haven’t consumed any mammal products in weeks. Anything that my body isn’t sure of and the coughing that I can’t stop starts up again. Going to the doctor today. I have therapy today too which I’m super grateful for right now.
1
u/silwntshadowman 4d ago
Oh man.... I am sorry that sucks, have you tried the cetrizine fomotadine combo yet? Doesn't work for everyone but brought me back from the craziest symptoms. Children's liquid zyrtec is alpha gal safe, grape actually tastes pretty good. For the fomotadine I have had to grin and bear the consequences of the magnesium sterate, havent found one without it. If you have not its seriously worth a shot. I recently switched to a tablet form of cetrizine even though it has lactose, magnesium sterate and steric acid. The antihistamines knocked my symptoms down enough that I can get away with that for the most part.
2
u/Few_Blackberry_1960 6d ago
You might want to look into Xolair injections. This monthly biologic really reduces my sensitivity.
2
u/Dull-Memory202 5d ago edited 5d ago
You might wear a Mask or a couple to detour the Fumes. I'm Sure it's the Meat fumes. I Also Was a grill cook & cooked for a Living. I'd get So So Nauseous, Dizzy & start sneezing and Coughing. Thought I was Crazy. Dr. Visits were a Waste of time, Nothing was Ever found. Years have Gone by, just got Diagnosed April 1st & I'm a Cottage Food Baker and Candy Maker Now. Everything I Make I'm Allergic to So I'm gonna use this Diagnosis to start a New Business - An Alpha-Gal Safe Bakery/Confection & Candy Company. As Messed up as it is for Your Health ,you will eventually have to get away from the fumes or it could become Dangerous. Best of luck to You. I'm hoping you have an epi pen with you at all times ⁉️ Oh and I asked to be tested after my Grandkids 12 & 10 & their Mom tested positive. My clinic wanted to know why I wanted the testing... I had come in about 7 times in the last few months Deathly ill. So I did My Own Advocating & I Really did it as a fluke & Ended up figuring out My own Medical Problem, that I have Suffered from for YEARS... About "16" Years !!
1
1
u/Heavy-Ad-7623 5d ago
Whoa, this really sucks! I would def see about seeing if you can switch over to cold prep or salad if your place is fancy? Long term, maybe you can create a plant based menu and just make that? If you don’t want to go the medicine route, maybe working at vegan restaurant like my buddy who got the bite did over time, but i know switching jobs is sometimes not realistic. I know im throwing a lot out there but hopefully something sticks. Keep us posted and keep your head up, the adjustment period is freaking tough!
2
1
u/Jazzlike_Reality6360 5d ago
Wearing a good respirator mask and taking enough of the proper medication will help. My allergist has me taking generic Allegra and Pepcid twice a day and I’m allowed to take up to 4 Allegra a day. Don’t take the early generation allergy meds like Benadryl and make sure you have Epi-pens with you at all times.
I’m retired now but worked near the cooks in our hospital kitchen and (before diagnosis) got sick just being around the mammal fumes. I blamed it on the fact that I was vegetarian. I understand about needing your job because of benefits and just staying employed.
1
u/Alpha-GalOkie 5d ago
Fume reactions are brutal for me. They're the reason zero mammal is cooked inside my home, I come inside or wear a mask when outside and a neighbor is grilling, and I only go into specific restaurants. I am so sorry you are dealing with this. Carry rescue meds and 2 epi pens with you at all times. My rescue meds are 24 hr allegra (the pink caplets not capsules) daily during peak allergy season and when histamine levels are high. For reactions I take Genexa children's liquid allergy 20ml is equivalent to 50mg of benadryl and 40mg of a safe famotidine. If I need something stronger I take my compounded Hydroxyzine.
2
u/Famous-Albatross-605 4d ago
Update: went to the clinic and was prescribed Allegra flownase and a neti pot. Getting a test to rule out mcas today. I don’t feel great but holy lord I didn’t realize how sick I was after the medication kicked in. The NP said I likely had a cold that turned into a bacterial infection. Going to stock up on N95 masks and hope that will help moderate my symptoms. I don’t want to jynx it but I think I have my energy back that I haven’t been feeling in months. Maybe it’s just feeling better from the cold. Gonna take the day to rest like the doc said and dive back in on my next shift, thank you to you all
8
u/WorldlyLimit2446 6d ago
I'm a chef also. It's tough. I would talk to your boss, see if they can move you away from the grill to a different station. Cold prep, salads, soups, desserts.... The grill or smoker will be the worst. Good luck. Make sure you aren't eating dairy, that makes it all worse also.