Our Story

About 5 years ago, my husband woke me up close to midnight and said, “I don’t know what’s wrong, but my feet are so itchy they are driving me crazy!” How weird is that? We tried to think of what might have caused it, but since I hadn’t changed laundry detergents or anything, we figured it must have just been a fluke. A year or so later it happened again and this time, the hives were going up his legs! We were really confused now because it seemed to be similar to what had happened before, but the reaction was definitely worse.  Unfortunately, we couldn’t remember enough about the circumstances surrounding the first reaction to connect the 2 incidents. When it happened a third time, the reaction was worse yet again and we decided he better see a doctor. He saw a friend of ours who ran some tests and said that basically he was not a very allergic person. He said he could do allergy testing but he did not think we would find anything that would explain his symptoms. He prescribed an EpiPen for him to carry and suggested he keep a food journal, which he did for awhile.

We think that the above reactions happened over a 3 to 4 year period with about one reaction per year. In September of 2010, he ate a McDonald’s hamburger at around 2:00pm in the afternoon. When we sat down to dinner at about 7:00pm that night, he was very itchy from his feet on up and I literally watched his arms swell with hives. Over the course of the next 3 hours, he took 3 Benadryl and had zero relief from the itching and swelling. At 10:00pm, he said his mouth and throat felt funny and he thought we better go to the emergency room. By the time we arrived, his whole body was covered in hives. I remember distinctly telling the nurse, “My husband is NOT this color.” They treated him quickly and gave him epinephrine through a nebulizer. His reaction was classified as anaphylaxis. Only after we saw an allergist (Dr. Charles Lane, Allergy Partners of Lynchburg) did we learn that he had the alpha-gal meat allergy.

Two years later, my son had ONE tick bite the first Friday of summer vacation. Ten days later, he had a Laura’s Lean Beef hamburger for a late dinner. He woke me up at 4:00 in the morning and said, “Mom, I think you need to come look at my face.” He was covered in hives! At first, I was confused because it was the middle of the night, but when I remembered what he had had for dinner, I knew exactly what it was. He tested positive for alpha-gal and his number was one of the highest Dr. Lane had ever seen. He thought his number was so high due to the how close the reaction was to the time he was actually bitten. His alpha-gal number was 74.7. This was scary for me since I had my husband in the ER with an alpha-gal level of 30.6!

WHERE WE ARE NOW: Both my husband and son have been off ALL red meat since being diagnosed. I plan to have my son retested this summer to see if his level has gone down since he has not had another tick bite. I will update this blog with his new alpha-gal level. Unfortunately, my husband is a different case. He works outside from spring until fall and thus, ticks are a regular occurrence for him. He hasn’t felt there was any reason to be retested, but I will be sure to update this blog if he changes his mind!

I would love to hear your alpha-gal story. Please reply below.

19 thoughts on “Our Story

  1. Dawn: Aren’t your guys abstaining from pork as well? My tick bite was in May of 2011, and my reaction was not until the following August. My reaction was to pork. I have not had any more tick bites and I have totally abstained from eating meat or pork since August 2011. I was just tested again a couple of months ago and the reading is still positive. Hopefully, time will tell. I don’t miss the meat much at all, but some bacon would be really nice once in a while!!!

    Thanks for creating your blog! ❤ – Farah

    • I am so glad that you mentioned this, Farah! Living with this allergy teaches you that pork IS red meat, despite the fact that everyone thinks of pork as “the other white meat” (great advertising campaign, right?). So, YES, both my boys have not had any beef OR pork since being diagnosed. Thank you for pointing this out so that others will know that ALL RED MEAT means pork too! My guys seem ok with turkey bacon, but I have another friend with alpha-gal who says it’s just not the same…is that you too?

  2. Hello,

    I stumbled onto your blog today as I was searching for information on Alpha Gal. I am from the Lynchburg area (Madison Heights) and also see Dr. Lane for my Alpha Gal. Small world!

    My story starts about 15 years ago although I did not get an answer to my symptoms until October 2012! My first reaction was in 1998 on a day trip to the NC Zoo. We had eaten at a Fudrucker’s restaurant and I had a horrible stomach reaction on the drive home.
    I have had symptoms that range from severe hives to horrible stomach issues, a burning throat, rashes, etc. On July 4th 2001 I went to the ER with horrible hives and stomach pain but left because the Benadryl took affect before I could be seen. In 2002 my stomach symptoms caused me to see a gastroenternologist and I had lots of testing done with no real diagnosis…other than Irritable Bowel Syndrome. The doctor told me that stress could really affect our gut. I really didn’t buy that! The stomach problems were causing my stress!

    I watched what I ate but seemed to never be able to pin point what was causing my symptoms. I learned to take Benadryl at the very first signs…sometimes stomach pains, tingly lips, etc. I survived but at times felt like I was dying. Fast forward to the summer of 2012 when I had several tick bites and my symptoms escalated. My pastor had recently talked about tick bites and that he had tested positive for alpha gal. The pieces of the puzzle finally fell into place and I put myself on a mammalian meat free diet. I immediately noticed the benefits! I had been having a bloating feeling and that was gone. My stomach seemed calm for the first time in years and I started to have a bit of energy…probably because I was sleeping and not up at night with my stomach issues. I made an appointment with Dr. Lane and finally got an answer! My number was in the high range…24.9.

    I am very strict about my diet but I am very sensitive to anything with gelatin in it. Taking a gamble with foods that have many different ingredients isn’t worth it to me! My husband works for Kroger so we usually buy Kroger brand sour cream….NOT ANY MORE…it contains gelatin! I even have problems with the Target Up and Up brand of Benadryl…the caplets have gelatin in them!

    It is a never ending journey but I am so thankful and feel blessed to finally have an answer and a plan of action to feel better!

    Glenda Ramsey

  3. My allergist feels there is a high probability that I have this allergy. I was bitten by a tick on my back in August and had a big reaction with enormous itchy, hard welt over 2″ in diameter. It took almost 2 months to subside and I still have a oval 1/2 inch scar. My husband had Lyme’s disease many years ago and thus we were familiar with that…but never heard of the alpha gal allergy or it’s relation to tick bites.

    In late September after having my normal morning coffee with Hazelnut flavored creamer, by bottom lip started to swell. I became hugely distorted and very uncomfortable. My husband ran to the store to buy some benadryl and I put an ice pack on it. I thought that I must have had a reaction to some additive in the coffee or creamer. To make a long story short, I have had over 25 episodes of increasingly severe lip, mouth and eye swelling, chest tightness, a goopy, raspy throat and diarreah and could not relate it to anything I ate before it happened My family doctor told me to take a daily Claritin, which did absolutely nothing for me. I started taking the chewable Benadryl at the first sign of tingling and it did help somewhat but made me very tired. It took me 2 1/2 months to get an appointment to see an allergist/immunologist which was just a few days ago all the while finding the whole thing depressing and anxiety producing. I am a Real Estate Broker and sometimes these episodes happened when I was with clients…it was soooo embarrassing and unexplainable. I felt like some kind of freak. The doctor went right to asking if I had received a tick bite. He has me taking a daily Zyrtec and avoiding beef and pork. I have not had a swelling episode since, although I had some mashed potatoes last night and woke up with a rash on my back this morning. I looked at the ingredients in the Hazelnut creamer and it is a dairy product…I switched to a non dairy. So, it seems that dairy is a problem for me as well. I am keeping a daily food/reaction log and have another appointment on Christmas Eve. Very glad there is support out there for this…..it almost seems like science fiction!!

    • I am so glad you figured out that diary was causing your reactions! Has your allergist run the blood test to diagnose the alpha-gal allergy? If not, you may want to ask him about it as he can monitor your levels going forward. I know what you mean about it seeming like science fiction! We live in VA where many people are aware of this allergy due to the high concentration of people affected by it. However, when we are out of town and at restaurants, people look at us, like we are crazy!

  4. I have alpha-gal allergy and have discovered I can’t take any of my vitamins that are in gelatin capsules. My reaction is not as bad as with meat, since the amt. is tiny, but it’s there, nevertheless. What puzzles me is that I have always loved and eaten onions (even though raw ones make me burp), but since the alpha-gal has taken over in my body I find that I have a serious reaction to onions. I wonder if there are compounds in onions that trigger the alpha-gal response? So far, I’m fine with dairy, thank heaven.
    Nancy

    • Thank you Nancy for this reminder to others about products with gelatin in it! We cannot be too careful. I am glad to know that you are tolerating dairy also. The onions are a mystery to me too! What does your allergist say about it?

  5. The allergist I was going to told me the same thing about meat and onions: “Rub some on your wrist, and if you have a reaction, don’t eat it.” That doesn’t give me a lot of confidence, but she feels that testing for everything is a waste of money. Of course, I’m the one who winds up in the ER. Oddly enough, I tried some raw onion a few days ago and only had a slight reaction. Of course, the minute I felt ill from it I took my allergy pills and felt better eventually, although experiencing the usual extreme tiredness. However, the reaction is not delayed like it is with the red meat, but almost immediate. I may look for another allergist….?

  6. I just want to interject that it might be a good idea to not only use the term “red meat” but to include “mammalian meat” since the reaction is to the meat from mammals. That is precise enough to cover all the meats that seem dangerous for those of us with this problem..

  7. Hi, I was just diagnosed at Vanderbilt in Nashville. After 12 years of rushing to the ER with hives and on one occasion having difficulty breathing, I now have the answer. I have a very high Alpha-gal number! The doctors have told me to avoid beef, pork, lamb, mutton, and deer and also any animal products, such as butter and milk. I am doing research and find that animal products hide in many places such as “natural flavorings”. This is going to be a long road I fear.

    • Hazel HERE A FEW YEARS LATER! I have been off meat for a few years now with no allergic outbreaks. However, my original tests showed a score of 100. After all this time it still remains at 100 which the doctors do not understand. My case was unusual because after consuming meat daily I only had a reaction every year or so. I have many questions and no answers!

      • Hazel, my reactions were the same way. Only about 1 a year, which I am finding is actually very normal according to my allergist, but I would have stomach distress everyday until one day my system just couldn’t handle anymore and send my body into a reaction. My allergist name is Dr. Scott Cummings at UNC, and he is doing research, and a study on AG. There are several Facebook groups out there now for AG. I’m part of several, and they have a lot of great information plus some great recipes also.

  8. Yep. It’s really rough. You have to read every bit of every label, even if it takes a microscope. I went into anaphylaxis and just made it to the ER from our rural home, not knowing what was wrong. I know now! You have to look out for gelatin and lard, too. And if you live in the south, lard is used in a lot of places. You can’t eat things off the same grill where meat is cooked, etc., etc. I even found meat used in a so-called chicken parmesan frozen meal. It was use in the sauce. I find that most of the time I can use butter, drink milk, and eat ice cream….so far. Now and then I’ll start itching and have hives for no reason I can figure out. It’s a tough allergy to have to put up with, but since it’s fairly newly discovered, maybe they will work out some kind of way to get around it. We can only hope!

  9. Like so many others that have commented, thank you for making this info available. Recently(since Easter 2017) I’ve been reacting to mammalian foods, pork, beef, and now dairy. We live in a very rural area and I have had 3 tick bites this year. What caused me to suspect alpha-gal was that I was taking a daily collagen hydrolysate supplement (beef based) only to break out in hives, have GI issues, extreme tiredness, etc. every day! Taking the supplement and consuming beef was a double whammy and manifested asthma like symptoms. I, too, live close to the Lynchburg area and, from your recommendation, have an appointment w/ Dr. Lane. Thank you again for all of your research.

  10. Mine was similar to your husbands reaction. Was waking up in the middle of the night with hives for 4 years. Then chest pains like a heart attack started. My doctor could not figure out what was happening. Then while traveling for business in June 2015, I ate a big juicy hamburger at the airport in Houston. Started having chest pains 3 hours later on the plane on the way to Tampa but did not say anything By the time I got home at 8:PM (6 hours after eating) I was covered with hives. Five minutes after walking in my front door my throat and tongue started swelling, my heart started racing and my blood pressure dropped very low. My wife drove me to a nearby emergency care clinic where they injected me with two doses of Epinephrine then transferred me to a hospital. 23 hours later they let me go home with no diagnosis of cause.

    So I went to the VA hospital in Tampa where an allergist fresh out of school asked me if I had ever been bitten by a tick. The answer was yes, over 60 tick bites in 5 years, as I like to camp, hike,Zephyrhills and mountain bike. My blood was tested for AG and came back positive at 29.9.

    Have not eaten mammal meat since and have not had another reaction since. The reactions got progressively worse over 4 years culminating in 2015 anaphylactic reaction. I am starting to have similar symptoms now from heavy cream such as that found in good cafe con leche. Drinking my coffee black from now on.

    Regards

    • I don’t know if you have tried any since posting this, but the So Delicious (soy) brand of creamer is really good. I was surprised myself at how good it was. There are a lot of non dairy stuff out there to use to make some good coffees.

  11. I’m glad I found your blog. I had unexplained reactions starting in 2000, after the 3rd one, my doctor, like yours, said he could find no explanation, and gave me an epi-pen to carry around with me. My final episode in 2014 resulted in an ER visit in anaphylactic shock.

    I went back to my doctor and did not look forward to a 3rd allergist visit. The only reason I got my diagnosis is that my PCP sent off the wrong panel of allergy tests. He meant to send off the one for another nut allergy, and sent both by mistake.

    Needless to say, he was a shocked as I was. He did a little bit of research, but most of it was left up to me. My allergy now includes dairy, but have found some good replacements in the So Delicious category and almond milk. Never was a mild drinker, but it IS in everything, and I like cream in my coffee. LOL

    Thank you again for your blog and great recipes!

  12. So glad to have support through your blog. I got a lone star tick bite in April of this year when we moved to the Lake. I started with the hives after eating a McDonald’s burger about a week later, ending up in the ER with severe stomach pains. The hives continued for months no matter what I ate. An Allergist found I was allergic to eggs, wheat, tree nuts, peanuts, milk and tomatoes (plus every grass and tree in the state of Virginia!) Recently I was tested positive for Alpha Gal and I am freaking out because I don’t know what’s left for me to eat. I am taking Allegra and Zantac daily and also carry an epi-pen. And now I found that all of my maintenance medications contain magnesium stearate or gelatin.

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