Delayed anaphylactic shock is a new idea in the world of allergies. Previously, it was assumed that anaphylaxis comes on within minutes of being exposed to an allergen, or not at all.
Research carried out at University of Virginia has uncovered a severe delayed allergic reaction, which they call Delayed anaphylactic shock.
It appears to be specific to a meat allergy: beef, pork or lamb. Anaphylaxis can occur 3 to 6 hours after eating these foods for those who are allergic to it.
Symptoms can start with itching, progressing to hives on the skin’s outer and deeper layers. Swelling, intestinal irritation come next, along with airway constriction, chaotic heart beat and a rapid drop in blood pressure.
In mild cases anaphylaxis may include only the less serious symptoms, but it is possible for this to progress to the more sever, life-threatening reactions.
“Our conventional understanding is that anaphylaxis happens within seconds or minutes of exposure. The notion that it can be delayed for several hours is a paradigm altering discovery,” says senior study investigator, Thomas Platts-Mills, M.D., Ph.D., Professor of Medicine and Microbiology at UVA and head of the Division of Allergy and Clinical Immunology.
The surprising thing about this allergy is that it involves a sugar, not a protein as with the allergies that science has so far become familiar with.
The reaction is triggered when IgE antibodies bind to galactose-?-1,3-galactose (alpha-gal), a kind of sugar.
So what causes the IgE antibodies to alpha-gal to be produced in the first place?
Researchers suspect it is connected with the bite of a ‘seed’ tick, the larval form of various species of ticks such as deer ticks, dog ticks etc.
The researcher suspect that seed tick bites can occasionally cause a meat allergy in people with type A or O blood. Those with B or AB blood appear to be protected from developing IgE antibodies to alpha-gal sugar.
The study also found that the most common allergy testing method used by allergists, the skin prick test, does not detect a red meat allergy.
Many allergists still believe that allergies do not develop after childhood. This study makes it clear that adults can develop an allergy to meat due to larval tick bites.
When hiking in areas that may have ticks, wear clothing that protects you from tick hijacking. If you discover a tick on your skin, remove it as soon as possible in a way that removes the head of the tick from your skin.
Clothing repellents that contain permethrin (eg Permanone) can greatly reduce, but not necessarily eliminate encounters with ticks. Do not apply such repellents directly on your skin.
If you experience significant itching and redness around the bit, talk to your doctor about getting screened for an alpha-gal antibody.
There was a link to the original article used to research this one, but they have removed the page. This link may be to the same article.
{ 61 comments… read them below or add one }
All I can say is WOW! So many stories.
In May of ’09 8 awoke late at night with terrible stomach pain. By the time I got to the bathroom and turned on the light I noticed I was beet red; then my heart starting racing. Fearing a heart attack, I told my wife to get me two aspirin and call 911. By the time she got back to me, I was on the floor, unresponsive. I couldn’t get enough air, and had passed out immediattely after evacuating my bowels. The ER said it was a vagal reraction.
Upon repeati the event several months later I began aggressively pursuing an answer. I saw cardiologists, endicronoloists, GI docs, Electro-Physiology specialists who all ran me through some 45k of tests. I was even diagnosed with panic disorder.
After seven months and 12 events my wife and I concluded it must be
meat.
Having the fortune to live in Charlottesville, I was able to contact UVA and get screened for Alpha gal quickly. I now have to watch for cross contamination issues but fee as though things are much better. I take singular and zyrtec daily, along with an h2 blocker. I have an inhaler and epi jr if needed.
Would lov to chat with others if it helps.
Steve
Hi Steve…
I just notices that you’re post is exactly what I experience with my reaction. I just found out that I tested positive for alpha-gal after a long stint of all kinds of testing that resulted in nothing. I am relieved to finally know what was going on. I don’t break out in hives, but I do turn the beet red that you describe. I normally start out with a bloated, nauseated feeling, sometimes tingling in my hands and head, a feeling of going crazy being very faint. I also lie on the tile in the bathroom floor to try to get cool. All the while, my heart is beating so fast that I can hear it in my head. Once I get towards the “end” of one of these episodes, I have a massive bout of diarrhea. I don’t break out in hives or itch during an episode which seems to be what a lot of people do. I just wanted to touch base and see if my story is similar to yours, as it very much sounded when I read your post, very similar to mine. On a normal basis, however,I would suffer from itchy hands and feet which I’m wondering had anything to do with the alpha-gal? My allergist recently put my on 10mg of Zyrtec at night and that has helped my itchiness.
Julie — it’s a very good thing that you now know what was causing your symptoms. I hope you’ll read these posts carefully and see that depending on how allergic you are, you could be reacting not to just red meat, but to anything containing lard, pork or beef fat of any kind, gelatin, glycerin (sometimes animal, sometimes mineral), certain chemical binders in foods and medicines, and of course dairy products including whey, lactic acid, rennet. You will need to read all your food and medicine labels. Once your itching stops, you’ll know what you had eliminated to get to that point.
Second, if I were you, I would also be concerned that your episodes need to be recognized as serious to severe anaphylaxis. The thing is, no one knows if or when your typical episodes might change. During anaphylaxis, your condition could deteriorate rapidly to the point where you might become unconscious and in need of immediate emergency attention. This happened to me. Ten years ago, before anyone knew about alpha gal or red meat allergies, I ended up coming to, on my bathroom floor, woozy and a lump on my head, after having fallen down unconscious. Before I passed out, I had itching, rash, rapid heartbeat and painful, blowout diarrhea, and had taken Benadryl to try to stop the symptoms. I had no idea how much danger I was in. Only much later did I realize that I could have died.
You also asked about itchy palms and feet and yes, I have had those symptoms as I was trying to track down and eliminate all sources of alpha gal from my diet. I also have weird “roaming itches” from time to time, where the sensation “travels” weirdly from one location on my body to another, and it’s not just dry skin. Although I am very vigilant about reading labels, and I rarely try to eat out anymore, I still have vague allergic reactions of a milder kind, once in awhile.
You are probably not as allergic as I have become (because of a cluster of tick bites two years ago), most people are not. But this gives you an idea of what to look for in your food sources, and how to make sure you stay safe. You do have epipens now, don’t you?
Good luck!
Hi, Julie,
The first symptoms I experience are itchy palms and soles of feet. Then within minutes, it’s hives head to toe. It took me a few years to figure out what was triggering my reactions, due to the 4-hour delay after eating, but I have since been tested and found to be positive for alpha-gal (even though I’m B Pos blood type). I’ve become vegan, and haven’t had a bad reaction to food, although I did have a bad reaction after taking a prednisone taper for poison ivy, which the pharmacist said may have been triggered by a binder in the pills.
I have been battling “idiopathic” anaphylaxis for the past 3 years. They started in week 20 of pregnancy with my 2nd child. After eating a turkey wrap. vomit, hives, diarrhea, low blood pressure… then I didn’t have a reaction for about 1 year. After eating a chicken quesadilla I had the same types of symptoms. Then 3 days later I wasn’t feeling great so I ate Cambell’s chicken noodle… about 30 minutes later I had an even worse reaction that ended in me passed out in the waiting room to an urgent care. They came about every 2-3 weeks for 2 months then stopped. They returned 7 months later around week 20 in my pregnancy with my 3rd baby. Then came back when he was 2 months, and again when he was 9 months. The weird thing is I hadn’t felt good that day again so I ate fruit loops. About 4 hours later I had my normal symptoms and again was passed out in the E.R. waiting room… A re-occurring event is my stomach aches. I usually have one for a week or two before a reaction. The days I have a reaction I, looking back, have noticed I have a really bad stomach.
I have since started a new whole food diet and have had 2 more. NOTHING I have eaten links together. My doctor is running this alpha-gal test as we speak. But I have never been bitten by a tick. My tryptase levels were raised on my last reaction so I am scheduling a bone marrow biopsy to confirm systemic mastocytosis. Still no idea on my trigger. Or why this all the sudden started.
HELP! How have all of you found your triggers? I am reading all your comments and living the fears with you all. It’s painful, and causes anxiety! I am praying I will get help finding my trigger! Have any of you heard other people that had this start during pregnancy? Anyways would love any ideas on how u all found your triggers..
Wow, that sounds very scary.
Inhalants such as dust, mold, pet dander etc. cause allergic reactions for many. Maybe you should look beyond food. I’m not suggesting this is the problem, just expanding where you look.
Good luck, hope you’re able to pin the problem down soon.
Re: Sara A
I agree with Allergy Guy; “dust, mold, pet dander” are the unseen triggers.
Sara, it sounds like you have a good doctor, most doctors won’t spend the time to research allergy issues. From my experience; even the best allergy doctors are baffled with allergies.
My anaphylactic events began four years ago after taking one sulfa pill for a spider bite that landed me in ICU for a week and would be followed up with many more hospitalizations, ambulatory runs with ER visits. I am hypersensitive to anything that I am vaguely allergic; meaning, that when I eat/drink or come into contact with environmental allergens including dust, pollen, mold, smoke, and other stuff my tongue, face, eyes, and extremities swell (Angioedema). The only thing that has been a lifesaver is that a doctor set me up with a nebulizer to take Racemic Epinephrine instead of an Epi Pen which is hard on my heart.
The anaphylactic events were really bad and it seemed like I was in constant reaction for the first two years. My allergist said I wouldn’t live much longer if we didn’t move away from the farming community and humid environment.
We moved to a drier environment with a lot less farming. We threw away everything and live minimally. We continue to throw away clothing and bedding every few months. It has helped considerably and finally I haven’t had an anaphylactic reaction for five months! I still don’t feel “right” but it is manageable and I am gettting more active again.
The stomache aches are familiar to me, I get them about ten to twenty minutes before anaphylactic events. I remember a month or two before the very first anaphylactic event from the sulfa I was waking up at night and then during the day I would feel an incredible awkward pain in my neck and throat. Some might say it was heartburn but I disagree and find it difficult to explain it. Anyway, I still get the awkward pain in my neck and throat when my body is on Pepcid, Tagament, or Zantac too long. I have to alternate the between those three antacids every two months or so, when the pain starts I change the antacid.
When I come out of an anaphylactic event from Benedryl injections and Racemic Epineprhine I will become nauseous, dry heaving and my head hurts. It is quite awful.
Like you, I had changed my entire diet. I do not eat any yeast what so ever and stay away from dyes and food preservatives as much as possible. When one begins to read the ingredients on lables there are some addiitves that is in just about every food product. Citric acid, malted barley, malto – anything, and natural flavors are ingredients I stay away from.
I have also had to wear a honeycomb to a respirator face mask because the environmental allergy triggers were too much for me. Basically, when one goes into hypersensitive mode one has to go into a “bubble.” Any kind of fragrance either detergent, candle, or spray is an anaphylactic episode event trigger.
The best help I got was from allergy groups like this one and one doctor that I can’t afford to see regularly. For the most part ER doctors have been the worst and won’t even bother to read my allergy doctor’s instructions for caring for me during an anaphylactic event. Steroids are a big no-no to me. Steroids actually exasperate my swelling symptoms. Ambulance crews have actually been the best for helping me during an anaphylactic event. Of course, the ambulance crews have a difficult time with ER doctors too because the ER doctors don’t see me at my worst as when the ambulance crews see me first and have treated me for the anaphylaxis.
I have emphathy for anyone who suffers with ongoing anaphylaxis and know from experience there is little compassion for anybody with any type of compromised health issues from the medical community.
I guess what I am saying is that when you are in a health crisis with an anaphylactic event you should dial 911 and not wait in the ER waiting room for help. Allergy issues compromised with anaphylaxis demands immediate care, please get an ambulance to assist you. Passing out while waiting for the ER to help you is not good in an anaphylaxis event.
The hardest part about allergies is that it is so much of a mystery of how the body will react to anything seen and unseen.
Allergy Guy,
Good call! Got my results today and you called it! Who would have known. My Drs. did not even have a clue about this! I do get shots for a cat allergy that consists of hives not the normal nasal symptoms. I react really bad to these shots, is it alpha-gal that I react to? I think I am waisting my time with them.
I’m not an allergy shot expert, T.M. I wonder if the dose is too high though, you might want to ask about that.
Thanks, but I’ve had the shots for years, same dose. I just think maybe the alpha-gal part is in the dander component of the serum. Just thinking that cats are included in the off limit foods then why am I getting shots for them. I don’t sneeze or have a runny nose or itchy eyes, just the severe hives like I do for red meat.
Well, I’m neither allergist nor scientist, but since what I do know is that your allergy shots consist of something taken from CAT, it makes sense that it would have alpha-gal in it, in whatever minute amounts? I’d ask an allergist who KNOWS about this allergy, as well as let your allergist know about the hives, because a too-high dose could indeed be a cause.
Kateyj-Thanks, that’s what I think too! Only problem is he didn’t know about this Alpha-Gal. He was a little upset that I wanted this blood work done to see if I have it. I live in Delaware and work with 2 other people with the same symptoms. We have delayed reactions 7 1/2- 8 hours, a little longer than what is stated in all the articles. I started a group on facebook, Alpha-Gal. Everyone’s invited to join and share.
Sara A — you must be so scared, and frustrated. You will get if figured out, though, and there is comfort in knowing what the triggers are, certainly, even when it spells the absolute end of enjoying some of one’s favorite foods or activities (I used to love going to new restaurants…)
See the posts above for the excellent suggestions on keeping a log of your food, your mood, your environment, the weather, etc. It will eventually point to something. I’d suggest also that you read all labels of all food items, skin care products, household products — anything you use in or on or around your body — you might start seeing a pattern. Some people are allergic to monosodium glutamate. Dairy, wheat and meat additives are snuck into all kinds of foods, skin care products and medicines under complex chemical names that simply won’t give a clue as to the original source.
Meanwhile, ask your allergist whether or not you can take something to reduce your immune response to your triggers, at least while you’re trying to figure out what’s going on. Because my alpha gal levels were so high last summer, with severe anaphylaxis, my allergist had me take Zyrtec AND Pepsid AC daily as a precaution. If I am getting accidental cross-contamination, those two different anti-histamines tamp down my body’s immune response. I feel safer. UVA left it up to me as to whether to continue taking them or not. I do take them, most days, especially since I am already exposed daily to dogs, cats & dust (all three allergens) and I think the “bucket” analogy is a useful one.
Good luck. Keep us posted.
I recently (within the last 5 months) found out that I have delayed anaphylaxis to artificial food dyes, most notably red & yellow. The scariest part for me, is that in can occur from 3 hours, to 3 days! Most doctors just look at me funny when I tell them that. Especially the ER doctors.
Mosquitoes are infamous for Westnile, ticks are known to cause ongoing meat anaphylactic events in people who have been bitten by a tick who eats “tick” meat, a spider bite was the prelude to my ongoing anaphylaxis to pollen, mold, dust…. Point being; was the dinosaur actually taken down by a bug rather than some catastrophic event?
A good Dinoburger sounds pretty good right now!
TO WINNY — I just re-read that your immunologist pieced together your meat allergy after you had had mast cell destabilizer?
Could you please explain why mast cell destabilizers (or is it stabilizers?) caused him to think about the mammal allergy? What’s the relationship? Thanks.
They at first thought some of my anaphylaxis was due to certain mast cell destabilizers like iodinated CT contrast for CT scans. I do have this, but the idiopathic anaphylaxis episodes have gone to almost none in the year since I gave up mammalian meat, and the few I have had could have been to cross contamination of foods at restaurants or unknown mammalian meat related ingrediants/flavoring agents.
I also was taking medicaton for chronic pancreatitis that was made from PORK. UVA very kindly tested these and found they containg alpha-gal also, so I no longer use these products, which has helped my almost constant hives also!!!
P.S. to Ward…
If your son complains of any of his past symptoms, or even new ones, and says he feels awful and thinks he’s going to die, BELIEVE HIM. Take him to the emergency room. I think I’ve had one false alarm that sent me to the ER, but it’s minor when weighed against the possibility of dying.
And I’ve said it before, and will say it again about taking “just one bite” of a known allergen…I learned the hard way and barely survived doing this. Have your epipens ready and don’t be too far from emergency medical help. Allergies are capricious, sneaky, and reactions can be unpredictable.
Ward — you mentioned the skin test — what was your son tested for? Alsio, the IgE of 300, was that test for general allergic response or a specific substance? Were your son’s anaphylactic events within a few hours, or up to three days after, eating dairy or red meat? The University of VA at Charlottesville has an excellent website on mammalian meat allergies. They also give advice about the specific types of blood tests required to test for the Alpha Gal antibodies caused by tick bites, which triggers the mammal allergy.
Your son’s symptoms are all very similar to those I’ve had over the years. I used to get extreme GI pain and urgent, cramping bowel movements, with only a mild rash or just generalized itching, after a single bite of red meat. Sometimes only mild GI symptoms and some throat swelling. What your son describes as “going crazy” and feeling something is wrong is described in scientific literature about anaphylaxis as “an impending sense of doom” and I certainly had that terrible feeling that I was about to die when I experienced a near-fatal reaction last June.
Since then, I’ve had a lot of odd reactions until I eliminated all dairy and all substances that come from mammals (gelatin, vitamins that are extracted from red meat). I don’t eat out unless I am very certain that the cook gets it completely and is extremely careful. I don’t want to die from this.
You will need to be very vigilant and record what your son is eating, drinking, being exposed to, so that if/when he has another reaction, you’ll have some information. Also, as has been said by other people on this group, emergency room doctors are generally not informed enough about anaphyaxis, delayed or otherwise, and the mammalian allergy is so newly discovered that most allergists aren’t aware of it (mine was not, and he thought I was loony, until he ran the tests and saw it for himself).
Good luck!
my 10 year old son has recently had 2 anaphylactic reactions in last 30 days. the first was severe. started at 4:00 am. me and his mom were slow to react and were not prepared. did not have benadryl. by the time my wife got him to ER it was over an hour since the onset. he had all the classic symptoms: hives, redness, itching, paleness, drop in bp, hypothermia, etc. he was stabilized and spent one night in ICU. his second was 5 days ago. woke about 11:30 at night with hives. we gabe him benadryl and used epi jr. called 911. his rash and hives worsened but his bp, oxygen, hr was all ok at the er. he was released about 5 hours later. both were accompanied by clearing his bowels. oddly, th week before his forst reaction, he had an episode where he went “crazy”. he felt funny. he used statements like”i’m gonna die” “something is wrong” “something inside me”. he had a hard time breathing. ended with him clearing his bowels. he calmed down later and went to bed. no hives, rash, etc. i now wonder if this was also an anaphylactic reaction? so far the docs have been stumped cause of the onset occurring at night. he did an initial skin test which was negative. recent blood work showed IgE of 300. all of this started the week after returning from a week trip to disneyworld. wonder if that’s related. ever heard of anything like this before?
Sorry to hear that your son is having allergy issues. I know how frustrating it is to deal with the “unknown.” Allergies is an unique medicine and so few doctors especially ER docs really do not have the knowledge to even begin to understand it.
From experience, the first thing one should do to begin to investigate one’s health issues is to keep a log of all activities, food, and “air” that one encounters. Second, thoroughly inspect your home for pests, mold, dust, etc. Third, try to go back to the basics on food, a good rule is don’t eat anything that comes from a box or plastic.
What I mean by “air” is to stay away from anything that has perfume/fragrances including laundry detergent. Limit exposure to smog, burning, pollen, dust, spoiled, rotten or decaying debris, and anything else that is not clean.
The hardest element about allergies is that one cannot physically see what will make one ill. There is no exact science for finding what makes one sick. It is all investigative and allergy testing often times than not, does not reveal the real issue that makes someone miserable.
The best advice is to observe reactions to one’s environment, food/drinks, and air then if one reacts to a certain element then eliminate that substance from one’s space and diet.
The trickiest part about allergies is that it might not be just one element that makes one sick, it might be multiple agents. The worst part about it all is that multiple triggers will cause a reaction rather than just one specific trigger. It is best explained as a overflowing bucket. A bucket won’t over flow with just a few drops of fluid but with a lot of fluid it will run over; just like with allergies, a few allergens a person can handle but with many one will have a reaction, just like the bucket over flows.
Hopefully, this information is helpful. One other little piece of information, be VERY selective when choosing an allergist. Not all allergists are good at what they do. Just because a doctor might win the town’s best doc award, it does not mean that they are good. Too many doctors will not be patient when working to investigate a patients illness. Very sad; but there really needs to be more “House” doctors who thrive on baffling symptoms.
This is very good advice.
Add to this also a log of emotional stress and weather. Neither are about allergies, but they can contribute to overflowing the bucket, or just feeling lousy or good.
My son who is 15, was diagnosed with beef and pork allergies in June. This problem started about a year before the diagnosis. He would only get mild hives at first. It would always happen around bedtime. We could not figure it out. Then the symptoms started to get alot worse. He would know only minutes before it started because his ears would start to burn.
The last time it happened was so bad we ended up in the ER. His whole body was one big hive, his lips and throat started to swell, he was having a hard time even breathing. His stomach hurt and he felt like he was going to vomit. Thank goodness for good ER docs who acted quickly and saved my son with a large dose of Epi, Solumedrol and Prednisone.
The next day we immediatly went to an allergist who asked if we had a family history of red meat allergies, we do not. Doc said do not eat anymore red meat for now. He wanted to do testing, but since he had large amounts of meds the previous night we would need to wait. So the next week we had all the testing done, sure enough beef and pork.
No red meat, no reactions.
When he was a baby he was not able to tolerate regular baby formula. He had to drink soy, but as he got older he didn’t have a problem with it, so I thought. He has always had trouble with allergies and asthma. But since we stopped the red meat, even his seasonal allergies have gotten better. His nose used to always stay stuffy and gunky. Not anymore. Could this have been a mild reaction the whole time?
Allergies tend to be additive, meaning if you are allergic to several things, your symptoms are usually worse if exposed to all of them, vs. just a few at a time.
Allergy symptoms can get worse over time, so yes, it could easily be that he was having mild reactions all this time.
To John — I used to steal a bite or two from my kids on occasion. That practice nearly killed me last June, after I’d had a few tick bites and a few weeks later, my allergy worsened considerably without warning. (My allergy started with beef and pork over 8 years ago, without any cause that I could think of, years before any of the research now being conducted that point to red meat, alpha-gal antibodies, tick bites, etc.)
IF I were you, I wouldn’t risk it. You never know when your immune system may be on “high alert” and cause a huge anaphylactic event.
I am now allergic to all forms of mammal products, including dairy; even gelatin in marshmallows.
Goat meat has become my new red meat. It’s very lean so it doesn’t bother me. Lamb would be similar but it’s more expensive and goat is available nearby. Haven’t had a reaction since I quit eating beef. I still steal a bite or two from the wife on occasion. I really feel for those of you that have it bad and can’t touch a bit of mammalian meat.
John, my reaction was just the opposite of yours. I made an Indian curry dish with fresh local goat last night and had my first ever delayed food allergy reaction. I’m recuperating from it now and just found this site while researching it. I’m an environmental scientist and spend a lot of time in the field, so tick bites are not uncommon for me. Bizarre how it developed an allergy to a type of meat that I had never had before, but shall never have again! Does anyone know why specific types of meat cause this reaction and not others?
Bruce — if you go to the UVA Mammalian Meat allergy website, there’s a Q&A about types of meat. So far, the researchers aren’t sure why those of us with Alpha Gal antibodies react so differently to different kinds of meat. The speculate that the leaner the meat, the less intense the reaction may be — which doesn’t apply in my case. Some people only react to beef, others only to pork, some seem to have different reactions depending on how the meat is processed or cooked, and whether it is organic, natural, or conventionally (additives, hormones, antibiotics) raised.
My allergy is much more intense than most other people’s and includes all forms of mammal meat, products and by-products. However, that only occurred last year after having been bitten by several ticks in about a week’s time.
Good luck.
Thanks Joy. I just heard back from UVA that I am the first person in the US with Alpha Gal antibodies that has reported allergic reactions to goat meat. Apparently it has been reported in Europe where they eat more goat meat but not over here. Just what I wanted to be famous for, LOL. I have had no reaction to other mammalian meats, so if goat is the only one I develop a reaction to I can live with that. My sympathy for your situation with reactions to all sorts of mammalian meats and by-products, that would be very tough to deal with. Have you ever heard of people’s allergies going away after a period of time, or are you stuck with this from now on?
Bruce — there is so much that researchers don’t yet know about this allergy, it being relatively recently “discovered”. UVA told me that it’s possible that people might become “less allergic” over time, if we don’t get bitten by ticks again. That seemed to be what happened with me over an eight year period, until I had the cluster of tick bites last spring. They’ve suggested that I get the alpha gal antibodies tested again to see if the levels have come down. I don’t miss red meat so much as I miss dairy, and the freedom to eat in restaurants without paranoia.
My immunologist pieced it together for me this fall when I had an anaphylactic attack about 4 hours after eating a nice big ol’ hamburger. Took 2 epipens and 4 hours in ER to get it down to just hives. Very painful attack also with gastrointestinal pain. Thank heavens for the reserachers that put it all together so he could use their information!!!!
I have had “idiopathic” anaphylactic attacks before, plus ones that were attributed to mast cell destabilizers. He put it together and had me test for alpha gal Ige. Sure enough had a Class 3 level of Ige (14.7) to alpha gal, very strongly specific to beef and pork.
I live in a rural area in SW MO where the tick that is thought to be responsible for this reaction roams. No telling when I had the tick bite – I have had a few over the years. I just wonder why I got the reaction, and no one else in the family did…..
Sigh….I will remember my last juicy hamburger forever!
I’ve had this since I was 17, just didn’t know what it was. I develop “knots” on the bottom of my feet in the arch area. That’s the way I ususally suspect I’m having an attack. I’ve also had the knots in the palms of my hands, but more pronounced in my feet. I usually take a couple of benedryl and go to bed, it goes away. They can years apart, months apart, days apart. Mostly years apart. The have gotten more severe in the past couple of decades. I have woken up with severe bowl distress. At this same time, I have episodes where I have fainted, heart pounding, trouble breathing, severe itching. The last episode was the worst. The only comfort I have had is laying on the bathroom floor with the coolness of the floor helping. After doing some research, I found info on the tick and chigger bites. 3 weeks before the last episode, my ankles were covered with chiggers. I have never put this together until I read there may be a connection. I have over the years had many tick and chigger bites. Country life in the south is drenched in those things. What is really odd is that my sister had the same reactions as I, along with my mother also. I’ve gone over 2 months without mammal protein, but it’s getting old quick. I’m wondering if there is just a huge risk to eating steak occasionally? I would like any info that any one can supply. Thanks!
I can’t tell you what the risk is Lea, but I would think the risk is about the same no matter if you have steak occasionally or often.
The fact that the symptoms are getting worse is worrying.
Well, you were right. I had about 6 bites of steak and broke out in welts. Nothing as severe as the last attack, but I did eat alot more of steak before the last attack and it’s been awhile since the last chigger bites and there was immediate action taken by me. Is there any info about whether or not this will go away? Will I have to shun beef, etc., for the rest of my life? I will note that my father and brothers have never had anything like this. Just us girls. So, that part just plain stinks.
The tick got me too. If it doesn’t swim or fly I cannot eat it. I can relate to the lying on the bathroom thing. Ground turkey (and other cuts of turkey) can be seasoned to taste somewhat like beef or pork. Go to Hursts Ham Beans website. They have seasoning packets they sell that work fairly well when used as a (beef)marinade for turkey cuts. I have been meat free for almost 3 years, but would nearly kill for a steak, hamburger, bacon sandwich,……. I have to stop, I’m driving myself crazy! Good luck to you and everyone else with this condition and to any doctors working on a cure.
I’ve gotten kinda use to the turkey….sigh……coming from a very meat eating family, it was really tough. I use to have a real problem with food getting stuck in my esphogous after eating a first bite of meat. I thought it was just some fluke that was only to me. I have since found that I don’t have it AT ALL since stopping the meat thing. I HAVE to have bacon once in awhile, especially during the summer with the tomatos. But even with that still have to deal with the food just not going down on the first bite. Hope it gets better for you too. It just plain stinks…..
BTW, I found that cooking turkey bacon in bacon grease, can somewhat give you the “taste” without the reaction. It’s been over a year for me now since I found out what the reaction was from and I’m sticking to no meat pretty good, but there are days…..
That would send me to the hospital for sure…but might work for people who are less sensitive. The uncertainty with living with allergies, though, is that the same amount of exposure to an allergen one day, causing little or no reaction, can cause anaphylaxis another day. Too much like Russian roulette, in my opinion (and also that of both allergists I’ve seen).
Hey allergy guy! Does rendered fat from pork have the alpha gal molecule in it? I thought it was only the meat itself that had that. If it does, I would like to be aware of it. I asked my allergist and she said no. I’m confused now after Joy’s statement. I scored a 4 on a scale of 6, so I’m up there.
About 10 years ago, I had two separate episodes of anaphylaxis, both from eating burgers from two separate fast food places. The first time it occurred, the first symptoms started several hours after I ate, with severe abdominal discomfort and diarrhea. That calmed down, then the following day, 24hrs later, I started to develop hives, rashes would flare up, itch and then go away, only to reappear somewhere else. This lasted the entire day. During the night I awoke because I suddenly started to have severe chest pains and difficulty breathing. At that point I was rushed to the hospital. After explaining the whole thing to the doctor, he administered a corticosteroid and Benadryl shot, and then yelled at me for not coming in sooner because this was life threatening. I had no idea it was anaphylaxis. I had 2 days of different symptoms. The second time it happen, I knew better. I also know not to eat fast food.
I am trying to find out whether or not Pimm’s products contain added sulfites. Thanks.
I have had many similar allergic reactions for about the last 7 years. I figured out early on that it was a reaction to red meat – but didn’t make the connection to ticks until recently. I do research in tropical forests in Central America and have been bitten by countless ticks over the last 20 years. Fortunately my reactions don’t seem to get worse, still, I am increasingly careful to avoid mammalian meat products (fish and poultry is fine). However well cooked or cured meats – such as deli ham or bacon (thank God) is just fine. Similarly beef and pork that has been stewed for a long period doesn’t seem to affect me. I would guess that maybe the alpha-gal sugar is sufficiently denatured by thorough cooking that it no longer elicits an allergic response.
That’s good to know – that well cooked meats don’t affect you. This may help others, although it sounds like it could be a dangerous experiment for some.
To be honest, after my fiance has had such bad reactions, I am terrified to try. We have almost lost him twice – the reactions were that bad.
It sounds like it’s not worth the risk then for your fiance.
I just figured out this morning that I most likely have this alpha gal allergy. Had a nice rib eye last night around 9pm and woke up this morning itching at 6am. A couple of itches soon turn into hives from the neck down. At one point feeling faint and nauseous. This has happened several times in the past few months and always first thing in the morning, sometimes waking me up as early as 4-5am. I pretty much had it narrowed down to beef but really didn’t understand it from what I had read about hives and allergies. I have no problem with eating a small, well done burger like fast food kind. Only happens with a nice juicy steak off the grill but has happened every time I eat a good steak in the last few months. I read something from DR Scott Commins, one of the researchers, that dosage seems to make a difference. I guess I’ve got it mild compared to some people which I’m thankful for. What really tipped me off this morning was reading the tick involvement because sure enough, this started shortly after I spent a weekend cleaning up mom-in-law’s property and I had quite a few ticks, tons of chiggers get me. I’ll have to see about getting tested but for now, I’m 95% sure.
Thanks for sharing your story, John.
Ironic that you can eat low-quality fast-food burgers and not high-quality steak. Makes you wonder how much beef is in a burger anyhow!
Dear John,
That’s how mine was. Had you been biten by a chigger or tick? That’s where you get this from. I got bit by a small tick on my neck that was embedded. From that point on I was in the emergency room 6 times in 4 months! Waking up with itching, hives, swelling, faint feeling, and going unconcious. They did the scratch test, 160 prick test, then the alpha-gal test. They had first told me I was allergic to peanuts, wheat, milk, & corn then they added black mold and a mouse. I stayed away from all of that and still ended up in the ER!
After months of agonizing episodes, and depriving myself of all types of foods, they finally found that it was the Alpha-gal mammallian meat allergy. They have me on differient antihistamines and I’m staying away from beef, pork, lamb, goat and cows milk of all kinds; also you are to stay away from buffalo meat and deer meat. Since I have been anaphylaxis free for more than 50 days. You really must your doctor or allergist specifically for the alpha-gal blood test. Also note, that if this is the allergy you have you won’t necessarily have a reaction each time you eat these items, or you may not have a reaction from one or more of these. Least that’s what my research and my allergist has told me. Let me know how it goes.
I understand what you are going through, trust me I do. It’s agonizing not knowing.
Hi John P.
In April of this year I had awaken in the night itching, getting up to find several hives around my arms, legs, and midsection. I went back to bed and in just seconds my mouth and tongue began to swell and I had thousands of hives all over me. I had began to feel funny (fainty) disoriented. I took my self to the ER, by the time I arrived my arms were blood red and very swollen.
I ended up making a total of 6 trips to the ER in 4 months, with my blood pressure dangerously dropping & my losing consciousness on many of these occassions. I was scared to death. Doctors ran many blood tests and two differient times an allergists did 80 prick tests. Totally 160 pricks to no avail. Some of the first allergy tests showed that I was allergic to peanuts, corn, milk, and wheat. I stayed away from all of these & still having ‘severe’ anaphylactic reactions! I ended up having to keep a food diary for months.
I had been bitten by a small tick back in April and remember asking a doctor if that could have anything to do with it and he said, “No.” Finally another allergist decided to run the “alpha-gal” test. YES! That was it after all, the TICK! I have gotten what they call, “alpha-gal mammallian meat allergy”. It’s rare and causes the delayed anaphylaxis! And if you are an “A” blood type you are inclined to get it from a specific tick bite or a specific chigger bite. There are only over 300 people world wide with it. The University of Virginia is doing a study on it. It’s fairly new and they don’t know a whole lot about it as of yet.
But you really need to ask specifically for the “ALPHA-GAL” test. All other allergy test screen the proteins….where the alpha-gal is a sugar that are in mammallian meats only. These meats include: Beef, Pork, Lamb, Goat, & Buffalo and everything that is derived from these animals such as: milk, cheeses, butters, gelatin which are in a lot of medicines including vitamins & jello. You have really got to do a lot of label reading. I’ve lost 45 pounds from this and have had my thyroid removed in 2005! You also need to go to the FAAN to research on how to read food labels especially milk.
Good luck!
The medical community knows very little about allergies, especially emergency room doctors who should be skilled in anaphylaxis, but they are not.
Delayed allergic reactions is the most common but the least accepted. When I had an anaphylaxis and hospitalized for a week doctors could not accept that an allergic reaction could last over three days. They were wrong.
Pollen is my nemesis. I can go outside with a mask on but the next day I pay dearly for some outside time. I am fine the day that I am out as long as I wear a face mask but the next day I have a severe cold, conjestion, stomache ache, diarrhea, and breathing issues.
I have beeen hypersensitive for over three years now since I had a drug/medicine reaction. Of course, all my life I have had sneezing and conjestion issues but it was a “cold.” Nobody ever thought to realize that I had allergies.
Your experience with doctors is unfortunately common, Julie. Some get it, many don’t, yet they still think they know more than their patients.
Given your particular experiences, I hope you leave more comments on the site to help others with challenges similar to yours.
Delayed Anaphylactic Shock to Chocolate, Pollen & Mold
I was stunned to see that the researchers were totally surprised that anaphylaxis can be delayed — I just take that for granted.
I have had a great number of small and large anyphylactic shock events over the last ten years (to chocolate & pollen) and they have ALWAYS been delayed. If I feel it coming, I usually have about 45 minutes to get some drugs and/or get to a safe environment.
The big delay between ingestion/exposure and the anaphylactic event is why it initially took me such a long time to figure out what was going on.
This spring I developed a new allergy and very different symptoms than I was used to — no throat constriction, face swelling or hives. Unbeknownst to me, I had suddenly developed a severe anaphylactic reaction to so-called “snow mold” (leaf mold) but it took me almost a month and a lot of visits to hospitals/doctors to sort it out.
My symptoms were: crazy heartbeat, “shocks” in my heart, constricted chest, severe angina-like pain, numb or prickling arms/fingers, sudden need to evacuate bowels, rapid drop in blood pressure, severe anxiety and feeling of doom.
Every time it happened (almost every day for over three weeks), I thought I was having a heart attack and had every test going but they all came back negative. I’m only 42 and I think all the doctors at emerg, the cardiac clinic and even my family doctor were starting to think I was a bit crazy — they were insinuating that it was just stress and I was having anxiety attacks.
A chance comment by someone else about a bad “snow mold” season this year and a “tight chest” finally let to my big eureka moment. I realized that my attacks were regularly occuring about 2-3 hours after being outside! I was so relieved to finally figure out what was going on.
I haven’t been outside for almost two weeks now (except to run to the car) and have eliminated all sorts of mold-unfriendly stuff from my diet, and I feel great!
So don’t let doctors pooh-pooh you if you think you’re having an anaphylactic attack hours later — they really do happen, and, as far as my own experience goes, they happen OFTEN!
Thanks for your Delayed Anaphylaxis story
Thanks for your story.
The medical establishment and research community tends towards a fixed idea of things.
I’m sure there are many more than a few people with similar experiences to yours. Some of them may have figured out what’s going on and some not.
The researchers were shocked because they ‘knew’ they were right about their previous ideas, only to have those ideas, that paradigm shattered.
I’m glad that you’ve worked things out.
It’s a read drag that snow mold is a new trigger. But it sounds like you are able to manage it.
Remember to put your car fan on recirculate during the snow mold season, instead of taking in outside air (in case you hadn’t thought of that).
The ONLY anaphylactic reactions known are the ones to the new ‘Alpha-gal Mammallian Meat allergy’, and that’s the one I have after being bitten by a seed tick back in April of this year. But the only thing that would get me out of it was a trip to the ER and epinephrine, prednisone, IV of fluids and multiple of other injections to bring my blood pressure back up, slow my heart rate down, and relieve all of the swelling & hives. I almost died 6 times in 4 months! It’s the sugar in the meats that causes the delayed anaphylaxis! All other food allergies are from the proteins in the foods that causes almost immediate reactions where as the alpha-gal sugar is the only one that causes DELAYED anaphylaxis.
You must really go to an allergist and aske specifically for the alpha-gal test. It’s the only allergy test that will defind it.
I suggest you replace “ONLY” with only known. Its discovery is relatively recent, before that it wasn’t known either. New anaphylactic reactions may be discovered, delayed or otherwise.
Try Bioenergetic Intolerance Elimination. It can help you with your allergies, so you can go outside again!
In the case of alpha-gal, delayed really means delayed. Anywhere from 3-8 hours after ingesting the food. I think 45 minutes in the world of allergies would still be considered “immediate”, i.e. directly correlatable to the food. With alpha-gal, the reaction is so far removed in time from the food, it is very hard to connect to the offending food. My typical reaction will start anywhere from 2-4 hours after eating the food.
sudden reaction after eating lamb
I have never eaten lamb before, and enjoyed a meal of rare lamb at my favorite Greek restaraunt tonight. It was one of the best meals I have ever eaten.
About 3 hours later, I felt suddenly dizzy and became frightened by the way I was feeling. My chest constricted, I found it difficult to breathe properly, and felt that I would pass out. My chest tightened, my heart started to race and I felt nauseous. I had to sit and felt very uncomfortable for about 10 minutes. I immediately took 2 aspirin thinking I might have had a mild heart attack. The symptoms passed.
I have never experienced these symptoms or any food allergy in my life before. Based on what I read here, I suspect an anaphylactic reaction to the lamb meat.
I had also taken blood pressure medicine (Benicar 40 HCT) shortly before consuming the meal.
Hi Lea,
I haven’t research products like rendered fat. Some protein may still get though depending on the rendering process, so if you are highly sensitive, this may not be safe for you. Sorry I can’t be more specific than that.
OK but alpha gal is not a protein – right? It’s an oligosaccharide, isn’t it?