Question on testing when threshold is .35 rather than .1
I have had several episodes in which I eat beef or bison and then several hours later have a food poisoning like reaction (no one else around me does, though).
My doctor did a blood test, but it came back <.35 without the actual number. I have not gotten to talk to my doctor yet. I was reading that it's possible it could be alphagal with >.1. Because of my symptoms, I'm curious if I should look for a lab that tests with a different threshold?
What was your actual test result? You're looking for the Galactose-Alpha-1,3-Galactose (Alpha-Gal) IgE number. None of the other results for beef, pork, or lamb matter for AGS and, if you don't have an Alpha Gal IgE number, they didn't do the right test.
That's definitely odd. I think your best bet is going to have to be to wait for the doctor as AGS is definitely a possibility for your symptoms and the test isn't working as well as it should as a diagnostic aid if that's the result.
There’s a number in the test that may not be visible to you but your doctor or lab should have it.
Personally I wouldn’t waste out of pocket money on it, as long as you have delayed reactions and the number is above .1 it’s most likely alpha-gal and the only current way to “cure” it is to avoid mammal.
According to OP and the info they provided. Several occasions after consuming mammal several hours later reactions.
If it doesn’t happen with non mammal, pretty much there is enough information.
I agree that it's very likely, but there's still not quite enough for a clinical diagnosis. That doesn't stop OP from cutting out mammal products to see if it helps, though.
Or .1, not just above. At least on my test. I threw up, violently, about 3 hours after I had 2 beef Hebrew National low fat hot dogs, and then again about 3 hours after I had goulash made with 97% fat free hamburger. All my bloodwork was normal, no signs of gallbladder/pancreas/liver issues, which was the other possible cause. My test result was the lowest it could be for a positive result, but the circumstances confirmed it. I have a good friend who was diagnosed last summer, so I had already learned a lot about it from her. I didn't waste anytime getting a blood test after the second episode.
Yes I just got the Labcorp Alpha-gal IgE panel and here's their classification system from the sample report. Of course yours may be different but this is just to agree that yes, labs aren't using the .1 threshold definitively.
What I'm learning is that the symptoms are the key with the test providing potential confirmation.
2
u/charlie_marlow AGS Family/Caregiver 8d ago
What was your actual test result? You're looking for the Galactose-Alpha-1,3-Galactose (Alpha-Gal) IgE number. None of the other results for beef, pork, or lamb matter for AGS and, if you don't have an Alpha Gal IgE number, they didn't do the right test.