A Strange Itch, Trouble Breathing, Then Anaphylactic Shock

Jan 04, 2018 · 32 comments
Dee (St. Louis)
I have the alpha-gal allergy, officially diagnosed in 2013, but self diagnosed years earlier (and met with skepticism by doctors). My symptom was stomachaches that were increasingly severe. After one episode I was hospitalized and tested for bowel, pancreas, and gallbladder problems - left after 3 days with no diagnosis. I made the connection myself that the stomachaches had to be related to eating mammal meat. To test my own hypothesis, I bought beef jerky and turkey jerky, both teriyaki flavor from the same brand. Ate the beef and had extreme pain. Ate the turkey 3 days later with no symptoms. Then I knew it had to be mammal meat. I stopped eating meat, even though my doctor clearly wasn't buying my explanation. After years of no meat, I thought "maybe it was all in my head" and ate a few bites of pork. A few hours later - anaphylaxis and completely covered in itchy hives. Fortunately a friend carries an epi pen and saved me. This episode prompted me to see an allergist, and tested positive. Unfortunately this article doesn't mention stomach pain as a symptom, but alpha gal allergy can also manifest as waves of pain so severe it is like being stabbed.
[email protected] (Los Angeles )
it is not really that unusual for adults to deveop sudden and severe food allergies. this has happen to me, to my wife, to other relatives and friends. doctors are trained to find it unexpected, but casual anecdotal experience shows it probably is not.
Malcolm Bauer (Southampton, NJ)
Kudos to the nurse who proposed this diagnosis while all the doctors were mystified!
Rebecca (Vermont)
This is a great 2016 Radiolab podcast, in which a woman quite delightfully tells her own story of her experience with alph gal http://www.radiolab.org/story/alpha-gal/
MGerard (Bethesda, MD)
Bravissimo!!! to Dr. Lisa Sanders who writes the Diagnosis feature for the New York Times. Each article is well researched and elegantly written. And, kudos to the Times for offering these intriguing, enjoyable and valuable columns to its readers!
Ken Case (Staunton, VA)
I went through this same mysterious medical problem, except that I was bitten by chiggers. Shortly thereafter I began experiencing systemic hives after eating beef and dairy products. It took 7 years to be accurately diagnosed, and confirmed by the alpha-gal blood test. Only a few months ago the sensitivities began to decline. I am now 95% recovered, and am able to tolerate the foods which used to trigger symptoms.
MaryR (Amelia, Virginia)
I suffered multiple symptoms for nine months before before being diagnosed with alpha gal allergies. My major symptoms were anxiety, racing heart, tingling lips, rash, hands and ears which itched insanely, followed by diarrhea and days of feeling hung over and ill. It is easy to avoid steaks and pork chops and hamburgers, but the hidden mammal products in medicines and other foods are harder to avoid. Gelatin is in so many foods! I live in the country where it is very hard to avoid tick bites. Even when I try hard, I manage to get a few bites every year. Also note that only adult female Lone star ticks have a white spot. Males, juveniles and nymphs do not have have the white spot.
Leslie (Dutchess County)
I also live in tick country, on a farm, and after several bouts of tick-borne diseases I've altered my behavior in these ways: I wear permethrin treated clothing when out on the farm (insectshield is a company that will inexpensively treat your own clothes) and I shower at night. Those two things have meant only one tick bite in years, caught early. I pass this on to help others avoid getting bit!
John Smith (Cherry Hill, NJ)
THE BIT OF A LONE STAR TIC Was the cause of the patient's life-threatening symptoms. I'm familiar with two other types of tics in the area in PA where I live--one that causes Lyme's Disease and the other that cause Rocky Mountain Spotted Fever. Now the Lone Star Tic carries a very dangerous disease that can cause anaphylactic shock which leads to death is emerging. How many more varieties of tics are out there? What other diseases do they carry? Are the presence of such tics related to global climate change? Can we develop ways of sterilizing them by piggybacking on the research done by the Bill and Melinda Gates Foundation on malaria? So who's going to call Bill and Malinda to get the ball rolling. Helping in Africa is admirable. Also, charity begins at home. They need to help the US where they live!
Trina Sullivan (East Hampton, NY)
http://www.27east.com/news/article.cfm/East-End/520333/Experts-Fear-Next... Sometimes the alpha-gal allergy is identified by the strangest things, including the story about a bus driver who had an attack after eating a lollipop.
cbharvest (Saint Michaels, MD)
My best friend in Virginia got this. After half a dozen trips to the emergency room, it took more than a year for one of her doctors to suspect it and send her to UVA, where it was confirmed. She was actually allergic to hundreds of foods by then, including lettuce! Traveling for work, she would cook and carry her own food after having had something prepared at a hotel in a pan that had previously cooked meat and sending her to the ER. I had never heard of this before she was diagnosed and almost didn't believe her, but after doing just a little research, I found there are thousands of people with this illness, many having taken years to identify what was wrong. This is something we are going to see a lot more of. Be alert with your children and selves to the reactions. The tick may be long gone and unremembered, but its after effects can last a lifetime.
MK (Concord, MA)
"Her doctors were dubious. New food allergies — especially severe ones like hers — are uncommon in adults." My allergist made a bet with me that I was not allergic to broccoli (after anaphylaxis to eating it) because, he said, "No one is allergic to broccoli." The test came back positive. The interesting thing about allergies is how we know so little about them. Maybe this most recent development -- meat allergies -- will open some doors to discovery.
KK (Eastern Shore of Maryland)
Dr. Thomas Platts-Mills, UVa pediatric pulmonologist of some renown, is the U.S.A. hero here. Dr. Scott Cummins, now at Chaple Hill, is also an heroic alphaGal pioneer and on-going researcher. There is also an Australian woman doctor who identified this concurrently. It is a miserable, life-threatening thing to develop. When it first happened to me, I was told definitively and positively that there was no such thing as adult-onset allergy to beef (then lamb, then all meat, ALL MEAT, including veal stock and...bacon...). That was decades ago. Eating only things that fly and things that swim is restrictive, but do-able. It is difficult when eating out, even at friends' dinner parties. My last reaction, after a dinner where my hosts knew that I was "allergic to meat," happened after I thought I tasted bacon in the very savory chicken dish we had been served -- chicken because I AM allergic to meat. I asked the host/chef if it DID contain bacon, and was told, "of course!" There is small hope in that some who have not been tick-bit for several seasons (hard to accomplish), or for other reasons, eventually do not have alphaGal reaction. But getting blood tests to determine alphaGal levels is not easy to accomplish. After 2 years, my wonderful rural GP managed that. Because it is now acknowledged to be more prevalent. Increased awareness. Thanks for spreading the word.
Julia (NY,NY)
i became a vegan three years ago and all the little allergies i had through the years are totally gone. It's amazing how healthy i've become.
lb (az)
Or going vegan could be a placebo effect.
MainLaw (Maine)
True, but if it works don't knock it.
Trina Sullivan (East Hampton, NY)
Just this past fall, I saw Dr. Cymerman, as well, at acStony Brook medical facility, because of a sudden outbreak of what turned out to be hives that was covering my legs and stomach and chest for no reason that I could figure out. I too, was afraid it was the result of some sort of tick bite – – I live out in the Hamptons, in the woods, and there are all kinds of ticks that bring out the worst of everything, including Lyme's disease, the alpha-gal allergy, and all other kinds of infections. Just by lucky happenstance, there were no other allergists participating in my health plan within 50 miles of my home, and lucky me, I ended up with Dr Cymerman and her wonderful staff. After several days and number of hours of testing, and ruling out ticks as the culprit, they narrowed it down to keeping my cat out of the bedroom and a few dietary changes. I already carry an EpiPen because I've become allergic to Yellowjackets and some bees the last few years. All I know is that Dr Cymerman is very thorough, and I am relieved that I do not have – – yet – – the dreaded alpha-gal allergy or any other tick-related illness. They are very common out here and I know a number of people who suffer from them. Better safe than sorry, to keep checking things out until you come to a resolution.
susan levine (chapel hill, NC)
This tick disease is not uncommon in NC. In fact Chatham County NC (i think) is to Alpha Gal what Conn. is to Lyme disease.
Reed (North Carolina)
We in Orange County, NC, just north of Chatham, also have lone star ticks, and alpha-gal allergy. My husband, after two trips to the UNC emergency room with near-lethal anaphylactic shock and inability to breathe, was finally diagnosed with this allergy. Orange Co. EMC absolutely marvellous, both times. He now has epi-pens at home, in his office, in his car. Of course, the manufacturer of epi-pens has now increased the cost of them by 600%.
andrea (oregon)
One more in a long series of excellent reasons to give up meat. --Vegans
Trina Sullivan (East Hampton, NY)
I understand the point if you are vegan or some sort of vegetarian, but after reading about how this week Romaine lettuce might have E. coli in it, and the number of plant-based products that are polluted by fertilizers, salmonella, etc., we have to understand that no food is 100% safe in the universe and we have to pick and choose what works for us best.
Blue Jay (Chicago)
Not. This is rare.
dobes (boston)
I'd rather give up ticks.
LeAnne (Chapel Hill, NC)
Finally! I'm relieved to see this medical condition getting mainstream coverage. I have the mammalian meat allergy and like many whose symptoms began years ago before anyone knew what was happening, I struggled with mysterious symptoms that would often begin in the middle of the night (4-6 hours after ingesting mammal meat). The condition is complex: it is not just as simple as avoiding mammalian meat, but some people have 'fume' reactions to mammal meat being cooked, reactions to safe meat being cooked on the same grill as mammal meat, and perhaps the most complicated: the hundreds of foods, personal care products, medicines, etc. that have mammal products in them. This condition is not recognized by the CDC; companies do not HAVE to label products with mammal ingredients. We have to call manufacturers to find out ingredients. We in this 'community' hope to see this severe allergy better acknowledged in the medical community, and research funded. I don't whine about not being able to eat red meat; it's the rest of the condition that is frightening. Thanks to the NYT for highlighting this.
Blue Jay (Chicago)
Fake meat that tastes like the real thing sounds like a good development for this patient.
Deb Paley (NY, NY)
Smart nurse.
Marilyn Sue Michel (Los Angeles, CA)
I developed an allergy to lamb two years ago. I rarely eat lamb and didn't realize it until a year after the first episode, when it happened again. No tick bites or problems with beef.
Vanessa Hall (Millersburg, MO)
The spot on a Lone Star tick is *not* shaped like the state of Texas. It's a "lone" spot, just like the Texas flag has a "lone" star. It also goes by other names. https://en.wikipedia.org/wiki/Amblyomma_americanum
carol goldstein (New York)
Do dairy products contain alpha-gal?
MLChadwick (Portland, Maine)
FWIW, I just Googled your question in some depth and the answer is Yes & No. Allergic people's reaction to dairy seems to vary idiosyncratically.
Brian T (Lexington KY)
Let me Google that for you: Yes, but some people who are allergic to alpha-gal can still tolerate dairy. https://news.vanderbilt.edu/2016/12/21/allergists-say-alpha-gal-red-meat...
LeAnne (Chapel Hill, NC)
Some people find that dairy causes severe reactions; some do not have problems with dairy. Of course dairy is a mammal product. I don't think it is well understood at this point.