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Anyone diagnosed with alpha-Gal syndrome?
Diagnosed in June. Alpha-Gal is a tick-borne illness. Wow, life changing. Thought if I stayed away from pork, beef, and venison I would be fine, but made tiramisu donuts with my grandson and the heavy cream has an ingredient (carrageenan) which has properties of the alpha-Gal sugars (or something like that) .... My tongue and throat swelled up a bit and I was almost ready to go to the ER. Scary and frustrating.
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I have AGS since 2007(19 years). It took 7 years before I was properly diagnosed. Don’t believe all the hype you hear about cures, SAAT, and home remedies. THERE IS NO CURE at this time. Until Dr Cummins says there is a cure I won’t believe it. I’m not trying to be a Debbie downer but facts are facts. Watch cross contamination it will get you every time. Best rule to live by is Fins, Feathers, and Scales are good, Gives live birth and nurses it’s young Bad
I wish you all luck on this crazy journey.
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2 ReactionsI am seeing Dr. Commins in May. Hopefully will get some answers. Unfortunate that Mayo Allergy Dept does not have any specialists in this specific allergy yet. Am hopeful there will be one in the near future. Am doing a cheese challenge soon. Crossing my fingers!!
I was diagnosed with Alpha Gal and would like to know what others with this condition do to avoid symptoms, aside from taking probiotics.
Any sugar except organic cane snd turbinado will trigger a flare up
White domino sugar giirs thru something cslled bone car: its mammal and its dimply to make the sugar white. Tgere is zn app cslled FIG . Get it znd bring your phone into the grocery store, hold it up to any barcode on any package you were about to buy. If it turns green you can buy it. If it turns yellow it will show you the reason that it’s a cautionary food and if it turns red, don’t even think about it I take Zyrtec and I’m doing acupuncture right now. I’ll let you know if that works, but I have flareups that are really, really really really bad no dairy no meat for me.
@colleenyoung yes and have stopped eating all dairy and mammal meat feel alot better 3weeks in
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1 ReactionIt took a year and five visits to the Er to figure out I have alpha gal syndrome. Avoid meats and seem ok with dairy. However, had a pedicure and immediately broke out in hives. The moisturizer had tallow and/or gelatin and my feet reacted to a topical trigger and there you have it. I take claritin and it seems to back off the episode before it becomes life threatening. JeanetteR
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1 Reaction@jeanetter Welcome to Mayo Clinic Connect! That was some reaction you had to the pedicure!! You’ll need to know how to deal with these allergic reactions. Have you spoken to your doctor about the incident and/or what you should do if it happens again? Wow, such a wild way to join the autoimmune group on MCC! We’re glad you’re here and hope the rest of your participation is seriously dull!
I have never been officially diagnosed with alpha-gal but have not been able to eat red meat without my gut shutting down since I was bitten by a tick 50 years ago. Doctor said RMSF. This was long before Lyme or Alpha-gal was a thing. I eventually did a long term Lyme protocol thirty years ago and have not had further issues with Lyme.
Here are a couple things you might not think about.
I was hospitalized once after unknowingly eating something fried in lard (common practice for fast food in the old days). Now, I share a household and discovered that cast iron pans used with red meat fats can retain same when I got sick after using one. My daughter has gotten into a kick of using fancy Japanese meat fats.
Since daughter has started using meat fats, I have developed a full body rash but the two may be unrelated.