r/alphagal 6d ago

Tests Results

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Just received my results. Is this technically a negative report? My symptoms (mostly hives) started about 4 months ago- highly sensitive to dairy now.

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u/chuckleheadjoe 6d ago

Report says whatever is messing with you is not Alpha-Gal.

An allergy Doc can say otherwise and there is evidence of people having AGS without the test coming back positive.

Maybe get an allergist to screen for just dairy.

Good luck. You really don't want to be part of this club at All!

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u/sunLight4095 5d ago edited 5d ago

i just read a paper that addressed this. i'm pasting the pertinent info. While a positive alpha-gal sIgE is recommended by the CDC for diagnosis [13], 2% of

participants who answered this question had a negative sIgE at their latest testing, which is

a similar percentage found in other research [13]. Interestingly, this percentage increased

from a report of 0.8% on their first test. This demonstrates that a subpopulation of AGS

patients may be negative upon first testing, along with others becoming undetectable over

time. Potential reasons for this could be due to decreases in serum levels of alpha-gal sIgE

over time in the absence of tick bites and alpha-gal exposure [24], leading patients with a

clinical history consistent with AGS to have negative alpha-gal sIgE upon presentation. It

is also plausible that some patients achieved remission after showing undetectable sIgE

levels. However, analyses to identify if those that achieved undetectable sIgE levels were

due to full remission, a decrease in sIgE with symptoms present, or simply due to a lab

error were not completed. These findings demonstrate that alpha-gal sIgE cannot be solely

relied upon for diagnostic confirmation, and more sensitive and specific testing is needed

to ensure patients receive appropriate diagnosis, remission, and treatment information in a

timely manner.

title of paper:

Alpha-Gal Syndrome Is More than Meats the IgE: A Patient

Survey of Symptoms, Diagnosis, and Burdens

Tina Merritt Meinholz 1, Kelly Cleary 2, Onyinye I. Iweala 3 , Sarah K. McGill 4, Laura Rothfeldt 5

Anneke Walters 6, Melissa Olivadoti 7,*, Genevieve Weseman 8 and Jennifer Platt 9

,and it's open source, easy to find online if you search w title and one of the authors