Updates!
We have had a number of great questions from blog readers over the past few months and wanted to share them (and our answers) with all of you:
If a patient tested 8.16 positive for galactose specific IgE, does that also mean they should avoid all mammalian meat products including dairy?
The number does not mean as much as the person’s symptoms. There are people with very low numbers who cannot have any mammalian meat or dairy without having reactions. At the same time, there are people with very high numbers who can have dairy and eat one or more type of mammalian meat without issue.
We have heard of people who are so reactive that eating something cooked on the same space as mammalian meat causes them to react. We have not heard of any kissing issues related to this allergy–it seems pretty unlikely that it would be an issue.
I have chronic pancreatitis and have to use digestive enzymes in order to digest proteins especially properly. Most of these are made of pork protein. I have changed brands a couple of times because I had allergic reactions (I thought it was something in the manufacturing process) but because I have auto-immune urticaria also I thought perhaps I was just having a “flare” instead of true allergic reactions. Do you know of anyone else with alpha-gal allergies that has found a solution to THIS dilemma?
We tested this person’s pancreatic digestive enzymes (brand name Panges CN 10) in our lab and found that they did contain alpha-gal.
I accessed your website and blog after doing online research following my initial episode of delayed anaphylactic shock last week and talking to several other people who have had this reaction. I have been bitten many times by ticks. My reaction, which followed almost exactly the typical reactions of this kind, occurred several hours after eating locally raised goat meat (which I hadn’t had prior to this for about a year). I notice that virtually every type of mammal commonly ingested, including venison and bison, is included in the list of meats causing this reaction EXCEPT for goat meat.
Goat meat does contain alpha-gal. We will add it to our list.
A Resource on the Mammalian Meat Allergy 
I caution mammal-meat-allegic folks who eat poultry: Not all bird meat is the same. I had a ghastly severe reaction to ostrich burgers.
Requesting our researchers to copnfirm that the big flightless birds – – ostrich, emu, and rhea – – contain the bad stuff.
Thanks for the notice! Ostrich meat does not contain alpha-gal (nor do emu or rhea). Is it possible that your burger was cooked on the same surface as mammalian meat or mixed with beef fat?
So we should be able to eat an ostrich steak. I was wondering because it is a red meat. Thanks
Ground Ostrich meat may be mixed with pork or beef fat like they do with a lot of ground venison. I would ask the supplier first and tell them about your allergy. I noticed one supplier who made ostrich dogs did list pork additives.
Similarly for Turkey sausage, if its in a casing, watch out, it may be pork casing. I make my own turkey sausage, there are some good recipes out there for it.
Check your supplier. Ostrich meat has very low fat content, and so, like many other wild game, a processor will add pork or beef fat to the ground mix. Ask before you buy. One supplier who makes ostrich hot dogs, does list that there is pork additives.
I believe that my allergy has been building since childhood.. I had urticaria since puberty .. occurring (I thought) for no reason. As I have gotten older the episodes have become life threatening.. and the diagnosis was just in the nick of time!.. I am wondering about “cows milk”. I am afraid of it although it does not seem to cause an incident at this time.. I developed COPD about 10 years ago right out of the blue.. I am hoping that this immunological problem is related to my breathing and that breathing will improve. Does anyone have experience with this issue?
Thanks for the comment! From our research so far, we have not seen a connection between this allergy and respiratory issues. As for the milk, some people with this allergy have reactions after eating dairy but others do not–which makes it very difficult to advise either way.
I seem to have a reaction to low fat milk products but not to full-fat dairy. Has anyone noticed this?
While I tolerate cheese, and milk and milk products in COOKED foods, the milk biproduct WHEY is a killer for me. Unfortunately, whey is in lots of products, from Nacho Doritos to butterscoth chips.
Just found this website and I am so happy! I do not feel alone anymore in regards to my “beef allergy”!! I live was diagnosed a few years ago after eating steaks and twice having severe reactions and ending up in the ER. After meeting with my allergist this week and learning about your research, I feel somehow relieved that I am not alone! I also have a history of chronic hives (idiopathic), and idiopathic andioedema. Am now wondering if both of those are related to the Alpha-gal. Have not gotten tested yet for the antibody, but will do so. I don’t remember ever getting bitten by a tick or chigger, but I live in the mountains of NC and spend a lot of time outside, so it is highly likely that I have been bitten. Thanks again for your work and please keep this blog going!
I am alpha-gal positive. I react strongly to beef and buffalo, not as much to pork but enough where I avoid it. It’s nice to jave a forum where I can discuss with other A-G people. Keep up the good work.
So excited about this website. Was diagnosed a year ago this week, and am finally learning how to eat out again! 🙂
Concerning the comment about touching food being ok without the fear of reaction, I would just add that it is crucial, at least for me, to remember to wash my hands before doing or touching anything else, especially with really fatty meats and before I touch or prepare my own food. My wife and I have found cross contamination to be a big deal for me, though I’ve heard that’s not the case for everybody.
just my two cents; thanks so much for this!
I have been dealing with this for 20 years, getting worse every reaction. It has always had mammal meat involved until recently. I have just had another (hopefully last) reaction to FETA CHEESE (goat milk based). Never reacted to reguar dairy. Just to warn others with this condition.
I was just diagnosed with this and have avoided all meat for the past month. Just had several incidents of hives in the crooks of my elbows and along my wrists and my back, especially around the waist. The only thing I can think of is goat cheese, which I’ve eaten several times lately because I haven’t had trouble with dairy. I’m going to avoid it and see if I can isolate it as the cause. Thanks for all the help, everyone — it’s really important to know less typical causes of reactions so we can each figure out what to avoid.
My wife and I both had this type of reaction to grass fed beef several years ago. The only meat that we had been eating was free range chicken that we raised, and fish.
Can you tell me if rabbit meat might elicit a similar response? I was planning to start to raise rabbits for meat also.
Thanks,
Bill
Unfortunately, although rabbit meat is leaner than beef, rabbits do have alpha-gal, so rabbit meat will likely elicit the same response as beef.
Thanks for the quick reply. I was afraid of that.
Is there a test to see if we still have the allergy?
Bill
Hey, what about guinea pig (cavy)?
I read about the Peruvian meat breed that gets to 6-7 lbs a while back. Apparently there are some breeders in the US and the meat is sold in some of the larger urban areas.
Bill
I’ve had a week now where I’ve been to the ER @ the hospital once and then continued to have milder episodes every day. I’ve been off the meat since March 2011 and am concerned that now my allergy extends to dairy also. So I’ve now gone off the dairy. The only thing left that I can think of causing my discomfort this morning is the fact that my Premarin is derived from horses. Could that be the culprit that is setting me off?
I can comment on dairy. I am tolerant of full-fat dairy, but have had severe reactions to low fat dairy.
I used to believe my mammalian meat allergy extended to dairy, but was wrong. While milk does not agree with me, the reaction is gastrointestinal rather than allergic, and is a non-issue when the milk is cooked. The real “dairy” concern, for me, is WHEY. Derived from milk, it roduces the same reaction (severe, and delayed) as if I’d eaten burger. Whey is in or added to lots of things, from cottage cheese to butterscotch chips to many brands/types of ice cream. So consider reading lables for “whey”. (Interestingly, when cooked, whey generally does me no problem. But mammalian meat, no matter how cooked, remains deadly.)
Yes! My mother had the same reactions to beef that all are talking about on this forum….until she finished menopause. It IS directly related to hormones as weel as having the Alpha-gal. I have positive Alpha-Gal for beef, pork, venison, and …..as I was told…bear and squirrel. Wasn’t expecting a lead allergist of a big hospital to add those details. Looking at eating ostrich for my steak and ironi needs.
Hello,
About a year and a half ago, I started having symptoms from drinking milk and eating beef/pork. A few moths prior to the onset of these symptoms, I was bitten by 10 to 15 ticks during a military training exercise in northern Florida. A few weeks ago I had blood allergy tests done for both milk and beef and they both came back negative. So, my two questions are:
1.) Are there any known mammalian meat allergy cases that were caused by ticks in Florida?
2.) If I am allergic to alpha-gal, wouldn’t my blood test for beef be postive?
Does this mean I need to keep searching for what’s causing these allergy symptoms, or should I be tested for alpha-gal?
Anyone….. ? 😦
I’m not a doc, but I understand that blood tests are not that accurate. You might want to have further tests.
Im not a doc either but skin test for beef was a negative for me. My allergist sent off blood and alpha gal a deffinite positive. Found out in nov 2011 after 2 and half years of allergic reactions. Phillip near Nashville TN
I grew up in North Florida but have lived in TN for 20 years. I remember getting some nasty tick bites as a child and now have had severe alpha-gal for 5-6 years. I thought I had avoided breakouts for a while, I’ve stopped eating out b/c cross-contamination is a HUGE problem for me. This past week I broke out after eating a few milk-duds and whoppers my children shared out of their halloween candy. Textbook 6 hours later, and they both contain WHEY. I feel that Whey is also something I need to eliminate now.
thanks, LCD
I apologize for taking awhile to get back to you. We don’t have anyone dedicated to work on the blog at the moment, so we’ve gotten a bit backed up in email and comment replies.
The ticks we associate with allergy to alpha-gal are indeed present in Florida. A blood test for beef could be negative if your titer of antibodies to alpha-gal was low, although it seems unlikely that you’d be experiencing symptoms with milk if your titer were that low. How long after you eat are you experiencing symptoms? Are your symptoms oral or more skin and anaphylactic?
Hi.Thanks for responding.
About an hour or so after I eat my throat gets swollen and itches, I have trouble breathing, and then the skin all over my body itches and the symptoms are only relieved after I take Benadryl. Also… When I took the blood tests, it was done by a nurse practitioner at the VA hospital, not an allergist. She never informed me that I wasn’t supposed to take Benadryl before the tests (which I have since read online) and I had taken a Benadryl the night before I had blood drawn because I had a reaction to a hamburger. So, if Benadryl was in my system would it distort my test results?
My results say:
Rast: milk, beef = Class 0: <0.35 Absent/Undetectable
Whatever that means….
Thanks again for responding.
Alex, your symptoms seem unlikely for an alpha-gal allergy. Alpha-gal allergy typically has a longer delay (about 3-6 hours) and does not usually present with oral or airway symptoms. Also, the Benadryl is unlikely to affect your blood test enough to cause a negative result; however, it can have a effect on skin prick tests if you have those.
Ok. Thank You.
I read below that alpha gal allergy does not usually present with oral/airway symptoms. That has not been the case for my son. He does feel like his throat is closing off when he has had mammal meat. He says it feels like someone is choking him. I think like so many allergies the symptoms are going to be different in everyone.
I also feel like my throat is closing. My tongue swells and is often the first sign that I’m going to have a strong reaction. i had these mostly before I had pinpointed all the things I needed to avoid and I think it has to do with how much qty. you consume. It starts by feeling a little itchy. I use liquid benadryl right away and swish it all over my oral cavity.
I get itchy behind my ears and under by arms, then spreads between the thighs, and about that time the hives start on my arms and stomach, spreading down my legs, around the torso and the back. Then the nausea, sometimes vomiting, then,in extreme cases, the world starts closing in. I have no desire to even attempt eating red meat.
Dear Alex and research staff: In response to your comment to Alex and elsewhere on this website that alpha-gal is associated primarily with DELAYED anaphylaxis, my experience proves otherwise. Although many times my reactions have been delayed, varying from two to five hours, I have had two severe (one was life-threatening) reactions within 30 minutes of eating mammal meat or fat, and I have had several smaller reactions, reversed by taking Benadryl, after ingesting dairy and even one smaller reaction within 20 minutes of merely cooking red meat for my children. My allergist surmised that as I was frying beef meatballs, enough fat became aerosolized for me to inhale it. I suggest you amend your opening page to state that delayed reactions are typical, but that alpha gal allergies can produce and have produced reactions in much shorter time spans, like mine.
I just came across this blog and related information. I have had these exact symptoms since the mid 1980’s and am amazed at reading about the connection to tick/chigger bites. For almost 30 years now I have limited my meat diet to fish and fowl including emu and ostrich with no problem. I would like to try a bite or two of steak (or BBQ ribs) every now and then but am afraid to do so due to past reactions and trips to the emergency room.
All seafood except for crab seems to be OK but I do have a very similar reaction to crab. Any connection or is that most likely a separate issue?
I will be checking with my Dr. regarding the blood test. Thanks for the research.
I recently discovered your website after many years of not knowing why I have this allergy. What a relief to finally understand. I don’t feel I need to get tested for alpha gal allergy since my symptoms are classic. I developed this allergy in the summer of 1996, shortly after moving to a rather wooded section of Isle of Wight county, VA. Allergy tests at the time showed nothing, so after several scary reactions to red meat, I gave up eating it. However, small amounts of bacon did not bother me. Once I had a reaction to gummy bears, and another time, a reaction to a non-red meat sandwich in a restaurant, which must have come into contact with a blade used to cut red meat. Finally, I gave up all meat except some seafood for health reasons and I don’t really miss it but at least I can explain it to others now. By the way, my blood type is A negative.
Hi, Jennifer: the gummy bears probably have gelatin in them (from cows). I had a reaction to marshmallows for that reason.
It didn’t occur to me until Jennifer mentioned her blood type, but I’m also A negative and I’m wondering if there’s any particular sensitivity based on blood type.
Anne and Jennifer – initially, we thought there was a reduced risk for sensitization to alpha-gal in those with type B blood because of the structural similarity of the B blood group antigen and the alpha-gal sugar. However, our subsequent research has suggested that there is no relationship between blood type and sensitization to alpha-gal.
Is it safe to receive intramuscular vaccinations that contain gelatin (eg, HiB)?
Hello, thanks to everyone for sharing their experiences and thanks to UVA for your valuable work. I have two comments. First, I’d like to encourage UVA to amend the second paragraph of your FAQ, where it states that unlike peanut or other food allergies, people with the alpha gal allergy have a delayed reaction. That is just not always true!
It would be more accurate to say “typically” or to add a qualifier that recognizes that some people have more immediate reactions. I became allergic to beef and pork 11 years ago, and had no clue how or why. Initially my symptoms were delayed 2 to 4 hours after eating. However, I had several reactions throughout those early years that occurred within 30 minutes of eating. Also, since my allergy worsened 2 years ago after multiple tick bites, all my reactions have been within 20 to 30 minutes of eating any mammal product (including dairy products, candy or processed food with milk or butter, and candy with gelatin such as marshmallows). Once, I even had a mild reaction within 20 minutes of frying beef meatballs for my family, apparently because the meat juices became aerosolized (that’s what my allergist has theorized).
Second, I wish UVA or other researchers would do tackle the investigation of prescription medications taken orally, topically or intravenously, to determine 1) which contain alpha gal or would be suspect because of mammal ingredients such as glycerin, gelatin, magnesium stearate or other substances, and 2) whether these are potentially dangerous, particularly for those of us who have severe anaphylaxis reactions and have difficulty with even slight cross-contamination. Obviously people are having reactions to some medications and even to topically applied substances with alpha gal in them. It makes me terribly uneasy to seek necessary medical care that may involve having anything applied to my skin, eyes or injected in my body, unless those substances are determined with absolute certainty to be free of alpha gal.
“…Once, I even had a mild reaction [to] frying beef meatballs for my family…”
Glad you mentioned this. My sensitivity has increased over time. Such that, even with a good range exhaust fan, turned on throughout, I have reacted to (real) bacon being fried by my spouse for other family members.
I was wondering…if we are able to test the person to see if they are allergic to mammalian meat, is there a test to test the meat to see if you would be allergic to it? If you had control over where the meat came from and COULD test it, is that possible?
Thank you,
Kathryn
Diagnosed alpha gal positive about 2 years ago. Avoiding all mammal meat doing fine. Pet sitting and 31/2 hours after a walk where I fed them beef bites. Wham. GI distress hit followed by itchy hot. Took benadryl and zantac, about an hour symptoms subsided. Either it was just contact or I didn’t wash my hands good enough post treats. This took me completely by surprise but since an h1 and h2 blocker made me better I have to believe that was it.
Bonnie, thanks so much for posting that, for providing more clues about how reactions to alpha gal can be triggered in different people.
I’m interested in what UVA thinks about your experience, as it appears to be related to either skin exposure or cross-contamination (from your hands to whatever food you ate shortly after?) Has anyone else had a similar reaction?
Apparently it is not necessary to actually eat mammal products, at least for some of us. This blog has two different reports (one mine) of allergic reaction after being in the same room where mammal meat was being cooked. And on another site, I read about someone who posted that after they became allergic to mammalian meat, they began to get hives if exposed to their horse’s sweat.
Has anyone else out there had a reaction to skin care products, topical ointments or creams, any kind of eye drops or eye ointments, prescription or over-the-counter, that has not already been reported here?
Has anyone had a reaction to vaccines that contain gelatin, such as, MMR, shingles, or chicken pox?
Hi Katey:
I too have Alpha-gal syndrome. So severe I cannot injest anything that even has a milk-derivitive preservative in it such as sodium lactate. In response to OTC items, I used some John Frieda conditioner (the shampoo was fine) that contained sodium lactate. About 5 hours after, I had a reaction. Used the epi pen and Benadryl. It now takes 100mg of liquid Benadryl to work. (Quick tip: Carry liquid Benadryl as it works much faster.) Any way, I though all was well, then about 2 hours later it started again. I took some more Benadryl and jumped in the shower and scrubbed. All was well after that. I have learned to read the ingredients of EVERY THING. I only eat out at one local fried chicken place that does not use milk in their batter. Other than that I eat from home.
I am an RN and thankfully I was at work for 4 of my worst episodes that sent me to the ER. Jello almost did me in. Not fun.
Also my allergist put me on the following regiment: 1 Allegra, 2 Zyrtec and 1 Zantac in the AM, then 2 Zyrtec and 1 Zantac in PM. Does anyone else take anything profilactically? I am so tired of taking these drugs as they make me sleepy. I wonder if they really help or if it is just my avoidance of all mammal/milk products that is truly doing the trick.
Love the blog. Makes me feel like I’m not alone. By the way, I’m from Louisiana and only one of 3 individuals in the Baton Rouge area that have contracted this illness.
I just signed up for this blog and am trying to understand this whole syndrome. Looks like all the posts are from last year and I would like to know if this study is ongoing. My main residence is in NY but we are getting a farm going on the Eastern Shore of VA and that is where I got the tick bite. I had to bully my Dr. into authorizing an alpha-gal test and the lab in NY had to send the blood work somewhere south. The confirmation came back that the alpha gal level is 27.8. The drs. in NY don’t know what to do. Just read this comment about shingles and had them last year and wonder if it was really shingles or a different evidence of this problem. I would love to get in on the study. Anyone on this list know how to do that?
Thanks for your help,
Doris Gebel
Three years ago, my son, then 18, had a reaction to an MMR vaccination – severe itching quickly developing into hives mainly on his trunk and thighs. He has been allergic to all mammalian meat since age 15. Unlike his “normal” allergic reaction (on-set a few hours after eating depending on his exercise level) – this reaction was within 30 minutes. But the vaccine was injected. As far as we could tell, the vaccine was cultured in fetal cow serum.
Hi. Does anyone know if there is alpha-gal in vitamin D that is derived from the lanolin in sheep’s wool? I’ve tested positive for allergy to lamb/sheep (testing via LabCorp), but negative for wool (testing via VIracor-IBT)
I’ve called the companies, Nature Made and Thorne Research, that make vitamin D products and they both said, “If you are allergic to sheep/lamb we suggest that you do not use our vitamin D.”
I am currently waiting for my alpha-gal test results.
I’ve had respiratory problems, diagnosed as asthma by 4 doctors, over 7 months. All prescribed inhalers like Advair, Alvesco, and oral meds like SIngulair.
Nothing helped. Breathing difficulty increased as time went on.
4 months ago, I began to have an bright pink, itchy rash over most of my torso.
After many visits to 2 allergists and my dermatologist, they said it was “anxiety”.
I had all the usual “skin prick tests” done TWICE and the only food allergy that showed up was pork. My doctor did not warn me against eating pork or using any of the MANY MANY products that conatain pork. Pork is everywhere. I did not know this until I started looking for it.
Feeling VERY frustrated because my doctor said, “No more testing. If I do more testing, it makes you think there is something wrong and that is harmful to you. I was taught to do no harm. You need to see a psychiatrist.”
I decided to order my own testing. It is not covered by insurance, but I wanted it anyway.
I went to:
HealthTestingCenters. com
You choose what you want and pay online or call their nurse to place an order.
If you don’t see what you want to order call and ask for it. If you are not sure of what is possibly available to be ordered go to:
Click to access MM_2010_052_DirectAccountNY_TRFMaster_092911REV13.pdf
for a good list of available blood tests.
This is the same link that is provided on this website to Viracor-IBT.
Health Testing Centers will create an order for you to bring to a Labcorp office to have blood drawn. If it is a test that Labcorp does not provide, they send it to VIracor-IBT. All you need to do is then wait for your results to arrive via email.
Health Testing Centers has super customer service. Do not hesitate to call with ANY questions.
I’ve had EVERYTHING that I wanted done through them.
I found out I am allergic to lamb/sheep by requesting my own test. I am glad I did because of the results, I decided to stop taking my vitamin D supplement to see if my breathing improved. It has improved and it is getting better everyday.
Also, about the vitamin D … vitamin D3 is also found in cod liver oil. I tried Carlson’s cod liver oil (1/2 teaspoon, which is half the serving size/RDA) and within 10 minutes I was confused, dizzy, could not really focus to see the tv, and I was just not right overall.
I will not try it again because this event REALLY scared me.
Previous to this event, I was tested for cod fish allergy and it was negative, so I thought I should be ok trying it.
Not sure if it was an allergic reaction or if it was the “lemon zest” used to flavor it so it is more pleasant tasting.
Just before the confusion set in I remember thinking that tastes like furniture polish smells. I don’t remember much about the hour that follwed taking the cod liver oil.
So, for mammals …
I”ve tested positive to sheep/lamb, pork, cat, dog, horse.
Negative to beef and cow’s milk. I will avoid beef and dairy just to be safe.
Waiting on my results for goat’s milk. I used goats milk because i could not find one for just simply goat, Not that I want to eat goat, I just want to see how many mammal allergies I have.
3 years ago I had a strange bright red, non-itchy rash on my neck that lasted for several weeks and then would fade and would re-appear in the exact pattern. This went on for a few months. My dermatologist biopsied it and the report said it appeared to be an arthropod bite.
I live in the southeast and was dealing with horses out in a pasture on a daily basis. I think I was bitten by a tick that started this entire chain of events.
I am so glad I found this website.
Thanks to everyone for sharing their stories and the valuable information !!!
Hello, Lilly. Would you please report back to this group about your alpha gal test results? A positive result for alpha gal would be contradictory with a negative result for beef and dairy. What kind of tests were those?
I don’t have a proven, scientific answer to your question about Vitamin D in lanolin. My understanding is that all Vitamin D-3 comes from mammals…and since it comes from mammals, doesn’t it follow that there could be even miniscule amounts of alpha-gal present in it? It would be great if a lab out there would test for it.
I had numerous tick bites two years ago, which kicked my 11 year old red meat allergy into a whole new realm of unmanageable. Testing confirmed that I have the alpha gal allergy as well as beef, pork, lamb and milk.
Since then, my alpha gal allergy reactions have been more extreme than most people’s, so my experience likely doesn’t apply to a lot of readers here.
I kept having mini-reactions and vague symptoms until I completely removed all possible sources of mammal substances from my food, skin care and medications. It took over a year to track down, do the reading, and follow my diet, until I was feeling almost complete relief from the allergy symptoms. Among the things that seemed to cause problems were items with dairy in them (Chick-fil-a chicken sandwiches, M&Ms), marshmallows (gelatin),and cross-contamination in restaurants. I rarely eat out now, and only when I talk with the chef in advance about eliminating all possible cross-contamination. I stopped eating food with added Vitamin D-3 (Cheerios, for instance, as well as calcium or fish oil supplements with D-3), and stopped using all skin and hair products with animal by-products. I also have stopped cooking red meat for my family, after a reaction while frying meatballs — and confirmation from folks on this list that other people react to food being cooked…frankly, I thought I was nuts!
Brushing my cat and dog don’t cause me any more problems than I already had (some sneezing/rhinitis, as I was already allergic to dog and cat, for years, before my alpha gal allergy).
There’s still possibly some mammal-derived magesium stearate in a couple of my medications — it’s a binder in medicine tablets/caplets.
Many allergists still don’t know about the alpha gal allergy. As long as they’re open-minded about it and willing to be educated, that’s fine. As for an allergist telling you “it’s all in your head”, and who is not willing to get online, do the research, and do your testing? I’d find a new allergist.
hi katy j!Iam experiencing the same trouble as you and have been since the eighties,Ijust was tested positive this past april -my alphagal IGE is 95.90.my joint pain is intolerable but my doctors know nothing about it and all i get is frustration.ive learned the hard way todo my own research about ingredients in food meds and cleaning products.my doctors wont accept that i have mini episodes-even though Ive been to the er with anaphalaxis over 80 times in twenty years.And magnesium stearate totaly screws up my gi tract.its sorry but im glad im not alone with this.hopefully someone will learn more
Hi there. Tested positive for alpha-gal about a year ago, and have kept the inflammation at bay with several supplements. BUT, I had to try the cod liver oil. Same one you used (obviously before I read this). The next day, severe joint pain in my knees! I was stubborn and didn’t want to attribute it to the cod liver, but after a week, there’s no denying it. Thankful that it wasn’t a more severe reaction. Anyway, just wanted to let you know there was someone else out there who couldn’t do cod liver oil either:).
I have developed a couple of other issues at about the same time this tick.beef allergy became obvious. I’m 46 and now have gallbladder related issues which is related to certain foods. No stones or sludge detected by ultrasound,… just a hyper sensitive gall bladder. Then my uric acids levels shot up causing gout. That is diet related. Now my testosterone is in a free fall. Wondering if that’s because of not eating red meat. My MD said and quote “That tick bite has done some strange things to your body …I have no idea what else its responsible for..” I have joint and muscle stiffness. I have to eat to avoid red meat, eat to follow the gall bladder list, eat to follow the uric acid list which leaves beets and celery …just kidding. I was in perfect health up until 2 years ago, no hospital ever, no surgeries, rare doctor visits … now I fell like a hypochondriac. Has any of these other symptoms been noted in your studies?
Have you been tested for Lyme’s disease or another tick-related illness in addition to alpha-gal? Joint pain is a common symptom of Lyme’s and can emerge a long time after the bite. I would pursue this with an expert in tick-borne illnesses — more and more information is emerging about tick bites affecting different body symptoms.
I am so glad to have found this website! My 7 year old son has alpha-gal allergy and I have been searching for as much information as possible since his diagnosis. I have been wondering if collagen casings on turkey/chicken sausages are safe or not. I have found 1 brand that is made without any type of casings but have to order them by the case. It would be handy to get some from my local health food store if possible.
Hi, collagen casings are made from pork, and they are not safe for me. No one can predict if they would be safe for your son. Every one seems to have different levels of sensitivity, and some of us react differently to different things, at different times. You may not be close to a Whole Foods or other larger natural/organic grocery, but there are several brands of links or patty turkey and chicken sausages that have no casings, and they’re delicious.
I typically purchase Applegate Farms sausages and turkey bacon for him. Are there others you can recommend? Thanks!
Hi, I am from Sydney Australia, and have recently been diagnosed with alpha gal allergy.. of ..47. we are seeing more cases of alpha gal allergy from tick bites in the last few years. It seems to be confined so far, to small pockets in our region.
There is a theory that migrating birds from the northern hemisphere are bringing ticks on their bodies, which drop off and breed with our local ticks. About 7 years ago I began to react badly to lamb, pork and beef with delayed reactions…usually waking in the night with my back covered in large hives and smaller ones around my eyes
I also suffered from bad stomach cramps hours after eating dairy.I also noticed my reaction was worse ,the rarer the meat. My gall bladder lining was thickened because I was allergic to the yogurt i was eating every night
.After 18 months , I was finally diagnosed with having the red meat tick allergy. I had been bitten by seed ticks whilst gardening,. On several occasions, I had about 60 very itchy miniscual ticks on me which had to be pulled off . I stopped eating red meat and gelatin and now I’ve also stopped dairy.
. The stomach cramps and wind pains have completely gone .
I also found out there is more galactose in goat milk than cow’s, so that is why I was reacting more with goatproducts..
. I was also showing and grooming dogs. After a while I became very allergic to the dogs while I was grooming them…very red itchy eyes and runny nose.It was only after researching on the internet that i found a correlation between the two problems. I was now allergic to the dog dander because I am now allergic to all mammal’s meat and skin. I stopped grooming dogs.
This is what I am careful of now;
I carry an epipen,and notify waiters in restaurants of my problem
I only eat fish, crustatians,chicken and duck
I drink soy milk and eat soy yogurt
I check all food labels for gelatin and meat products
I take tablets instead of capsules, unless they are vegicaps.
I cook meat separately to the chicken
i check makeup and lotions for gelatin etc
If having dental implants, check. if the dentist uses a bone grafting material derived from pork.
Notify all doctors, as friend of mine had an anaphylactic response to a gelatin product during an operation
Has anyone had a reaction to wheat and gluten as a result of this allergy?
So why do mammals have Alpha gal, but humans, apes, and old world primates evolved away from it? And why do new world primates suddenly have it again? (I say suddenly, I don’t know the time scale, evolutionary, for this). I find this interesting because I started researching online why humans were “naked”, that is, uncovered, no hair, no protection. Answer..Vitamin D production. Its strange and fascinating, some of the adaptations we humans have gone through.
Great question, Amy! Although the exact reason for the inactivation of the alpha-1,3-galactosyltransferase enzyme (which is responsible for putting alpha-gal on proteins) is unknown, there are a few ideas floating around, such as the introduction of an infectious agent expressing alpha-gal on its surface in areas where only the Old World monkeys were found (Africa vs. where the New World monkeys were in South America). To answer the other part of your question, the enzyme was inactivated in Old World monkeys after they separated from the New World monkeys (~35 million years ago); because humans evolved from Old World monkeys, we also lack a functional version of the enzyme. I hope that helps!
I am curious about other alpha gal allergic folks’ reactions to tick bites now. I have a nasty, itchy rash from a tick that could not have been attached more than a few hours. I don’t want to have to get Lymes disease testing every time i get a bite. I think they have to be attached at least a day for Lymes disease transmission, but it is scary. It is good to know that this could make me more allergic in the long term. I have learned alot from reading this discussion.
We are working on our farm on the eastern shore of Virginia this week and despite all my efforts to be careful, I have had several bites from what folks here call “seed ticks” they are about the size of a pin head and redish brown in color. Is there any information about these ticks increasing the reactions? They leave a small raised hard bump and the bite oozes clear fluid.
Doris
In response to tracy’s question on 16 April. I had a reaction about an hour or so after receiving the shingles vaccination. The hospital ER doctor thought the neomycin in the serum was the problem. However, I have the alpha-gal antibody and after seeing your entry I now have doubts about that diagnosis.
HI, I don’t know what is in the shingles vaccination…glycerin? gelatin? is the vaccine developed from mammal tissue? I haven’t looked into it extensively, yet, but I think I read something awhile back regarding flu and/or pneumonia vaccines. With flu season coming, could you folks at UVA provide us with guidance on whether or not the flu and pneumonia vaccines contain any mammal ingredients or are developed from anything from mammals?
Most people are not as reactive as I am — I don’t ingest, inject, or apply to my skin, anything from mammals that I can avoid. I still take a couple of medications that contain magnesium stearate or other compounds that may or may not be derived from cow or pig…including liquid Benadryl, ironically.
My son had a reaction to a measles vaccination. Unlike his usual reactions it was a quick on-set. I posted about this perhaps a year ago so if you go through the history you may find it. It was definitely the substance the vaccination was cultured in. (bovine fetal serum if I remember correctly) He was 19 at the time, had been alpha-gal positive for 3 years, and this was his first vaccine since a tetanus shot years earlier.
This relates to the questions on the shingles vaccine. Both Varivax and Zostavax vaccines have gelatin (12.5 mg, for Varivax, about 20% less than Zostavax) and trace amounts of fetal bovine serum. The warning is to avoid the vaccine if you are severely allergic to gelatin but that it should be okay if your reaction is only hives.
If UVA is following this, it would be extremely helpful to get some guidance on this. I was planning to get the vaccine but now am hestitating.
Just this month I had my second Alfa-Gal test and the results were in the “equivocal” range. Alfa-Gal was 0.30, beef was 0.29, lamb was 0.19, and pork was 0.27. My first test was two years ago and the Alfa-Gal result was 0.46. I’ve had the meat allergy since late 1997 and between then and 2005 I had several severe reactions (anaphylatic shock). I’ve had no tick bites since 2004/2005. What exactly does “equivocal” mean in terms of being able to eat meat or dairy? If I continue to avoid ticks, will this finally go away?
Interestingly, the Doctor who ordered the first test would not order a second one! His reaction was ” you know that you have the allergy. why do you want another test?” I found another allergist!
Anything being done to better educate the profession?
Just my humble opinion, not medical advice: I think your first allergist made a valid point. Food allergies are serious business, this one breaks new ground in a number of directions, and no one knows what the numbers mean for any one individual. If you read everything that UVA states on this blog and in their research, that’s apparently the message.
It sounds like “Equivocal” means “take your chances”. Since your past reactions were life-threatening, I doubt you would want to try mammal meat on your own without medical supervision and support. Isn’t UVA conducting food challenges with people IN their clinic as part of their research?
Two questions for you, then, are 1) can you arrange to try food challenges safely in a medical setting, where you live, and 2) are you willing to take the risk of having reactions that could range from mild to life-threatening?
My allergy is absolutely “UN-equivocal”. I’ve been advised that a food challenge, even in a medical setting, is out of the question. I am not even interested in trying it, even as my numbers are going down. One near-death experience was enough. Although, if the research leads to a safer method of de-sensitization, it would be great not to have the constant concern about cross-contamination or accidental exposure.
I have severe Rhuematoid Arthritis, some meds such as Orencia and Remicaid has caused a severe anayphylatic reaction, these too need to be added to your list.
I live in FL and had to diagnose myself after a couple of years of trying to figure out what is going on because none of the doctors here have heard of this. Any mammalian meat will cause GI distress, hives/welts, and sometimes vomiting. Any mammalian dairy will cause GI distress and swelling in my throat. Also can’t use any topical products with lanolin as it will cause hives and inflammation. I have avoided any more reactions by total avoidance, after two expensive trips to the ER I don’t take any chances. I also carry an epipen, benadryl and prednisone in the event of accidental ingestion such as when I ate gummi bears and didn’t consider the gelatin. I read a lot of labels and am much more experimental with cooking due to finding alternatives to dairy, I utilize vegan recipes and add chicken or seafood.
Do you think that kangaroo meat would be tolerated? I read that their meat does not have alpha gal, but they do have beta gal enzyme.
Jennifer, kangaroo meat does have alpha-gal. Some of our colleagues in Australia have reported patients with anaphylaxis to kangaroo meat, so it is best to avoid it.
I am alph-gal positive for 2 years now. Shortly after testing positive, I started developing hives any place on my body that my dogs touched. These are dogs that I have lived with for years and are fed no mammal products. Everything effects me from meat to dairy to pretty much anything containing anything from a mammal. Now I have seemed to developed an inhaled allergy and am wondering if my dogs dander could be the source. I thought for sure that it was ragweed and pollen, but after avoiding outdoor activities no change. My dog got in bed with us last night, and I woke up with itchy throat and ears, congested, sinus drainage. Has anyone else had the same effect or have there been any studies relating the 2.
Comments:
1. Don’t eat dog meat.
2. I’ve had very mild reactivity after grooming my goats. Perhaps I inhale some skin cells.
3. But no particular reaction to my dogs or cats. The cats often sleep on my bed.
Thanks for the reply, but I don’t eat dogs, they are my pets.
Hi, Courtney. I had the “regular” dander/hair allergy to dogs and cats even before I became allergic to alpha gal. And like you, I am affected by ANYTHING from a mammal (see my earlier posts to this website). I can still groom my cat and dog, and as I did before my alpha gal allergy, I wash up and change clothes after grooming them.
My cat sleeps on my bed. I have to change the sheets more often and air out and wash the blankets much more regularly. I have found that if I don’t, I start itching all over and develop a rash, once I get in bed. I also remember reading a post on another website, from a man who could got hives from exposure to his horse’s sweat, after he became allergic to alpha gal.
Does anyone have bowel symptoms but no rashes? I am wondering if a tick bite might have caused onset of rather extreme “irritable bowel” symptoms that began shortly after a tick bite several years ago.
i used to have bowel issues and have noticed a significant to almost complete decrease in these problems now that i have stopped all meat. so my question is could i have been having mild allergic symptoms all along?? i had 1 complete anaphylactic reaction and 2 that i was able to stop with benadryl and pepcid. now that i am eating no meat and very little dairy i’m in good shape. i have had some cross contamination issues though, so eating out has almost stopped too. good luck.
Hi — my very first symptoms, 12 years ago, were strictly “GI” symptoms — pain, bloating, diarrhea…within a few weeks of the GI symptoms, I started to also have itching, lips and tongue tingling and swelling, rashes and eventually anaphylaxis.
I only had rashes one time, but the crazy bowels are all the time.
Up until May 2nd I was as healthy as an ox. I caught strep from our little boys and then all hell broke loose. I was put on different antibiotics and finally got rid of the strep. We do alot of outdoor activities ( fishing,hunting,camping) you name it. We were working in the woods around that time and after ( in Mississippi / Louisiana and got plenty of ticks on us. I never thought of any potential issue except for lime disease and we are fairly careful. Anyway, I started to have horrible GI issues like diarrhea , severe stomach cramps, headaches , and what some people say replicate a panic attack.
I went through three months of waking up and feeling ok by lunch I thought I was dying ( seriously ) the stomach cramps and the need to have a severe bowel movement started followed by the dizziness and sweating. Sometimes my ears would feel like they were on fire. I went two to GI docs and they did all the test imaginable . Both were like we don’t see anything life threatening and you are over reacting. The thing was they had no idea the misery this was causing. Nights of laying the bed praying for the pain to stop and worrying that it was my time to check out.
They did a hida scan with cck and it came back at 34 percent, slightly low. I did have sever pain when she injected the serum into the Iv and was in the gallbladder area. After the removal I was still left feeling miserable and it was worse because something was removed that might have not been necessary. A month later the GI said go to an allergist and see what he can do. I went and turns out that I have the alpha gal allergy. I have given up beef, pork,deer, and pretty much everything else. The night have gotten so much better compared to what they used to be. Sometimes I still have the severe GI issues and I can’t tie them to certain foods. After writing all of this my main question is can the symptoms just be gastric because I only had the hives once , but the dizziness, stomach pain, severe nausea, and the panic mode came 4 to 6 hours after I had eaten meat.
Glad my wife found this site because for three and a half months I thought I was loosing my mind. If I avoid tick bites and stay away from mammalian meat will this go away or does it linger forever? I know it sounds petty , we love to deer hunt and having this sure has taken a lot of the enjoyment out of it. We live outside Baton Rouge and would love to talk to someone with the same crap.
One more thing I did not mention is when I had these reactions at night I was unable to sleep. I felt as if my chest was tightening and I just could no control my thoughts or body really . The allergist gave me a prescription for some epi pens and prednisone ( not sure why the prednisone ?
My symptoms were vey similiar to yours and I only had one or two episodes(and I had many before I gave up meat)) where hives appeared. On several occasions I went into anaphalactic shock. My Alpha-Gal test results are now in the “equivocal” range(0.10-0.34). Have gone seven years without any tick exposure and hoping the sensitivity will continue to decrease.
My wife grilled last night and even after washing it prior to grilling chicken I had an episode. Starts getting nervous and flush,then the weird tingling started on my back. Took some benadryl and was able to get it together in 30 minutes or so. Man this stuff sucks.
I have alpha-gal allergy. My 2012 Galactose-Alpha Ige was 32.30 or high. I showed no allergy to gelatin. The shingles shot has trace amounts of fetal calf serum in it. Should this be a concern for alpha-gal patients? I am 65 years old and debating whether or not I should consider the shot which is about 50% effective against shingles.
Thanks, Karen. I would also appreciate some guidance on this issue, as noted in my earlier post in December:
“This relates to the questions on the shingles vaccine. Both Varivax and Zostavax vaccines have gelatin (12.5 mg, for Varivax, about 20% less than Zostavax) and trace amounts of fetal bovine serum. The warning is to avoid the vaccine if you are severely allergic to gelatin but that it should be okay if your reaction is only hives.
If UVA is following this, it would be extremely helpful to get some guidance on this. I was planning to get the vaccine but now am hestitating.”
I have alpha-gal allergy big-time, but have eaten geletin without issue. Well, I just had the shingels vaccine (week & a half ago), upper left arm, & had a whopping reaction to it. Reaction was redness, extreme itching, swelling in the upper arm, hot to the touch, all around the upper arm. Over couple days the reaction extended to half of my lower arm. I treated with many applications of Bendtyl gel and sucked down max doses of Benadryl liquid. I lived. 🙂 So, being able to eat gelatin w/o reaction doesn’t mean subcutaneous injection will give no problem.
Thanks for sharing your experience. I’m going to ask my allergist, who is an expert on alpha-gal allergy, for her advice on the shingles vaccine and will let people know what she says. I’m inclined to wait to see if my antibody levels go down before jumping into this one. Your experience sounds miserable.
Find us a cure UVA. This thing stinks to the far side of the earth. No mammals no dairy and lots of weird side effects. I miss eating out. 4 years deep.
Phil – I can absolutely say “I feel your pain”! Not eating out is one of my biggest complaints. Another is that I had lingering vague symptoms until I got rid of just about 100% of any exposure to alpha gal in my food, medicine, vitamins, in my air or on my skin. I still have reactions that pop up at the weirdest times (just recently, I started to have a reaction after spending 20 minutes in a catering place, spotlessly clean, but where apparently all the pork and beef they cook had been aerosolizing and carried through their ventilation system…sounds absolutely nuts…but my reaction started after 20 minutes, out of nowhere. Benadryl and LEAVING took care of it.) I doubt there will ever be a “cure”. I have learned how to enjoy life without mammal meat or dairy. I would be happy just not to be so darned reactive!
Team alpha gal. Yeah! You know you try and look at the positives, like maybe I will acutally be healthier for eating this way. I am a truck driver by trade and this is about enough to make you loose your mind at times. My wife has been very supportive. It is very hard to relate what your going through to others because lets face it it sounds nuts. I could leave about as long of post here as anyone but I would mostly be repeating the same stuff. I believe I am sensitive to mammals and dairy and I think to the touch and air and I am considering giving up my dog to a good home. I have changed my deoderant and misc. personal care products. Though I am four years in it wasn’t until nov of 2011 that we got the blood work back. I am still trying to get everything right. I haven’t had a full blown reaction because I choose to avoid mammals and dairy since I was diagnosed. I still have several oddities that I don’t know if they are related to alpha gal or not but based on alot of other posts I kinda think its the ticks fault. Things could be alot worse but it can put you on a roller coaster emotionally. Everything you do has to be planned and that just takes alot of fun out of life. It seems like if I get even a trace of something my body tries to inflame and expell.
It is helpful to read what others are going through. You kind of say to yourself see there I’m not crazy.
It is probably worth noting for others what happens if I eat mammals. My last steak well done. I had three hour delay. Skin starts itchy crawl. Get benadryl and take alot of it. Within a another hour or so I am scalp to toe hives. They all vary a bit for me but fluid gathers under the skin in places. Sometimes lips and tongue tingle and nose starts swelling and air starts cutting off. Epipen knocks it out and usually feel much better soon. Cross contamination will do me in as well. I once went around with tingling lips and tongue for four days before my diagnosis. I thought maybe I had eaten to much acidy foods. I had about 25 reactions over about 2.5 years before we figured it out. They became more frequent in the last 6 months. I spent alot of that time period with crawly skin. I thought I kept poison ivy all the time. Don’t wait go get the blood work if you have any symptoms.
AMEN !!! Please work on an anti-anti-body to the alpha-gal. What do you recommend as far as continuing to check bloodwork? Should we keep testing our level of alpha-gal to see if our numbers go up? How often – once a year? Are we ALL expected to continue progressing to a more sensitive level as time goes on? Please advise.
I have actually been allergic to beef and pork for more than 23 years, and first noticed this as a teenage after I started Mountain search and Rescue. I was wondering if anyone else has also had reactions to the Tetanus vaccine? I was fine before, but had one in 2011 (it changed in 2005 I believe) and now had a very similar reaction!
Over the past couple of years, my dad has been struggling with this same exact thing. As a registered dietitian, I did a ton of research and came to a conclusion that this was the allergy that he had and I told him to get tested. It just came back…NEGATIVE. He has all of the same symptoms to a tee. Delayed reaction, severe hives, etc. His is typically only to beef (and maybe pork, but he stopped eating that a while ago.) He is fine with venison.
Anyways, has anyone had any experience with getting a test and it coming back negative, even though they KNOW that has to be what it is?? By the way we live in Georgia.
I dealt with this allergy for many years – – by avoiding mammal meat/products – -before any test confirmed it. You could re-test. But the thing that really matters is preventing the reaction. If avoiding mamalian meat/products works, then it works. (I must also avoid whey.)
Ana I came back negative the first time. So soon there after my wife and I went out for her birthday to celebrate. I ordered a steak and baked potatoe. Three hours later I had life threatening reaction. Scalp to toe hives. I was retested and came up positive. I was my allergists first alpha gal patient so I am not sure if there was a mix up about the test or what.
I have been battling with this allergy since August 2012. For the past 3 months I have kept a rash around my neck and upper chest. This rash never goes away but will get lighter or brighter based on what I eat and at times my face with flush. My reaction time is 30 mins to 2 hours after eating. Does anyone else have this type of symptom? I avoid Dairy along with red meat and pork which causes total body hives. My diet is mainly fresh fruit, veggies, chicken & turkey nothing out of a can or box. My allergy doctor was not able to find anything else that I am allergic to. If anyone else has this type of reaction, I would love some advise. I’m going to look really funny this summer wearing a turtleneck.
Try avoiding whey. It’s in many kinds of foods, from nacho flavored Doritos to some soups to some candies, to you-name-it. Once I made the connection to mammalian meat AND whey, I stopped having such reactions.
Will, Thanks, I will put that on my list of things to avoid. I also try to avoid products with Gelatin & Lanolin. I am glad that I have found this site.
About two months after I first got this allergy last spring, I developed a terrible bumpy rash all over my back. It didn’t respond to benadryl or an OTC hydrocortisone cream and I couldn’t figure out what had caused it. My allergist felt it was my body being hyper-reactive and “on alert” after the Alpha-gal. She prescribed a heavy-duty cream (some kind of hydrocortisone I believe) for my back and the rash finally went away. It lasted for at least a month and was terribly itchy, as well as awful to look at. I hope yours clears up — the constant itching and irritation can drive you around the bend.
Lucy, Thanks for your reply. I’m happy that your back rash finally went away. That gives me hope. I have been doing a lot reading on line about our allergy and I am amazed at…we all have the same meat/pork (some with dairy) reactions but so many of us have different side effects. I agree I believe my body has also gone into hyper-reactive and “on alert”. I am slowing figuring out that foods high in histamines also make my rash to from bad to worse. Like Will suggested I am adding Whey to my list of things to avoid.
I’ve had this for about 7 years now. I have shown a strong reaction to deer, bear, pork, beef, squirrel, and rabbit. So I’ll just assume all mammalian meat. I have no problem with dairy or collagen cased turkey sausage.
I have two questions for the good doctor.
1. It’s been almost two years since I have been bitten by a tick or had an allergic reaction (because I know what to avoid now). An allergist once told me that if I kept from having a reaction for 2-3 years, that the allergy might stop altogether and I could start eating meat again. He only mentioned this as a possiblilty. Have you seen this to be true?
2. I’m an avid outdoorsman that lives in GA (snake country). If I were to ever get bitten by a venemous snake, would it be possible for me to be given anti-venom? I know it’s synthesized from horse blood so I didn’t know if that reaction might be worse than the venom.
Thanks for any help.
ive been having this problem since 1990 and just was diagnosed positive last week.I need to find out about alphagal and neurological damage- ive had serious chronic pain in all my joints for years but im negative for lymes and arthorytis
Get re-tested for lyme.
I just did and its negative
this is john again from nov 11 2013-I also am experiencing unexplained hypertention and am vitamin d and calcium deficiency.I live in new jersey and would be willing to come to Virginia to be seen.My doctors don’t know anything about alphagal and im really in need of help.Ciliac desease has been mentioned in association with alphagal and ive had gi pboblems for years.I really need answers as my joint pain is unbearable!
John, I live on NYC and have an excellent allergist immunologist who follows this. If you want I can forward her name to you. (Not sure if you’re close to nyc). Anne
yes,and thank-you!
Send me your email and I’ll give you her contact info.
kienbachs@yahoo.com thank-you Anne!
I was diagnosed with Alpha-gal a little over 2 years ago, my numbers were, I believe 8.31. I have actively been a dog lover and owner for several years. Suddenly I started getting hives anytime my dog rubbed against my skin. Is there any connection between the 2. Like I said, these are the same dogs I have had for several years that never bothered me prior to the Alpha-gal positive. And on a side note, I would like to add for anyone newly diagnosed, don’t freak out. Sure you can’t indulge in red meat, pork, and if your anything like me, any and all dairy. However, I lost 19 lbs the healthy way when I had to switch my diet. It’s not so bad after all, just be careful.