Learning about Alpha-Gal

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We have spent the last 15 months taking our daughter to a range of doctors as well as her allergist in an effort to get to the bottom of her health issues. We know that she has a severe allergy to all bees, wasps, hornets, and yellowjacket venom. But over the past 12 months she has progressively gotten worse. She had joint pain, and increasing fatigue, moments where she would feel close to passing out, plus she had random vomiting and diarrhea that seemed to have no cause. We eliminated some foods from her diet, but she didn’t see any improvement.

Because she was still having a range of problems we visited other doctors that led her to being diagnosed with IBS and POTS. The doctors were sure that dysautonomia was what was causing the stomach problems and lightheaded/fainting feeling. So she added a prescription for each. And they helped a little.

But, she was still having allergy and asthma flairs in spite of using her medications and taking a daily antihistamine. She would suddenly start feeling very itchy or have a hard time breathing. Sometimes she would have asthma attacks after eating meals. One day she ended up back in the emergency room close to anaphylaxis even though she hadn’t been stung by a bee.

So, we went back to the allergist to start over again. Because of how severe her allergy flairs had been, her doctor had to skip skin testing and try to use blood tests to get some clues to what was happening.

We finally have a diagnosis! Alpha-Gal

Her blood test came back positive for an Alpha-Gal allergy. Galactose-alpha-1,3-galactose is a carbohydrate found in most mammals except humans. An alpha-gal allergy is cause by a tick bite that causes an allergic reaction to all mammalian meat, red meat, and products. Symptoms can show up 3 - 10 hours after being exposed.

If she eats any meat from mammals - beef, pork, bison, goat, sheep, etc. she will have an allergic reaction. It sounds simple, but isn’t. Those turkey hot dogs, might be made with a pork casing.

Additionally, she has to stay away from any medicines or health and beauty products that contain animal byproducts.

It can be very challenging to discover what products have a mammal source because it isn’t required to be labeled. If a product has gelatin, it is probably mammal based. If a product has glycerin, it could be animal or plant based, but without good labeling we have to avoid it. Most razors contain lanolin. Many medicines contain magnesium stearate which could be animal or plant based. Most toothpaste contains carrageenan. Many medicines are in gel tabs which is gelatin based. The list goes on and on.

She can still eat poultry and fish and appears to be fine with some dairy products, so far. We are still trying to figure out challenges such as eating out. Can she eat a veggie burger if it is cooked on the same grill as a normal burger? Will trace amounts trigger her anaphylaxis? How much exposure is too much?

Learn more

The Food is Good app now supports Alpha-Gal grocery shopping.

In talking with other people who have Alpha-Gal, we discovered that symptoms and presentation can be very different. One person had horrible GI issues for a week, where another person broke out in full body hives.

Alpha-Gal Skincare Products

We think that one of her allergic reactions was shortly after she put on her makeup to go to work. She threw away or gave away every health and beauty product that she had including her toothpaste. We spent a lot of money to buy only organic or vegan products that were clearly labeled with the source. It took hours to read the label of every product in the store and sometimes the manufacturers website to find product origins. When we weren’t sure, we skipped the product. Note: manufacturers frequently change ingredients so be sure to check the current product label.

Our goal was to avoid lanolin, carrageenan, glycerin, gelatin, stearic acid, or anything with vague labeling. Here are the replacements she purchased for hair, skin, and body.

Razors: Flamingo (Harrys)