My Allergy Origin Story: Alpha-Gal Syndrome
“Linda got her first tick bite when she was 19 years old. She didn’t know much about ticks, despite being a camper, backpacker, and girl scout.”
“It didn’t heal right. Cerrone has a scar from it.”
After the bite, Cerrone would wake up in the middle of the night with a severe and potentially fatal allergic reaction, with head to toe hives, GI issues, and blood pressure dropping.
“She started avoiding foods that triggered her symptoms because she didn’t know what she was experiencing.”
I ate steak for 2 days in a row. Those were the worst reactions I have ever had. I think that is what it is.
As she got older, her response to certain foods became more severe.
I had my first child at the age of 30. The allergies got worse after she was there. I became more sensitive.
After the birth of her second child, her allergies continued to get worse. She was getting tick bites.
The alpha-Gal molecule in my system is exposed through tick bites and they now know that it is true.
“The medical community had yet to officially recognize her allergy as she was searching for answers. It wouldn’t happen until alpha-Gal was formally reported in 2009.”
“The allergic reaction she experienced was called alpha-Gal syndrome, or alpha-Gal allergy, and she didn’t know it at the time.”
It is a delayed allergic reaction that can occur after someone eats mammal-based foods or is exposed to other mammal-based products.
The reaction is caused by Galactose–1,3-galactose.
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The symptoms of alpha-Gal syndrome are delayed, and occur 2 to 6 hours after eating the food.
Patients are fine until suddenly they develop symptoms that are not related to their eating, and that are out of nowhere.
Commins shares that typical alpha-Gal allergy symptoms include redness, swelling, itching, wheezing, trouble breathing, and even passing out.
There are patients who report isolated gastrointestinal symptoms, but instead have vomiting, diarrhea, and abdominal pain.
Commins says that there are other causes of AGS, including chiggers, stinging insects and parasites.
Most published data shows that a presence of pre-existing allergies does not increase the risk of AGS. Commins says that it appears to be a sign that a tick bite leads to a swollen, red, inflammation, itchy, slow to heal spot at the site of the tick bite.
According to a 2015 and 2016 study, about 2.9 percent of the American population has self-reported peanut allergies, a well-known allergy. In comparison, research suggests that about 3 percent of Americans have alpha-gal syndrome. In endemic tick regions, researchers estimate that alpha-gal sensitivity may range between 15 and 30 percent.
After the steak incident, Cerrone stopped eating red meat and noticed a difference in her demeanor.
She continued to eat dairy products, but eventually gave up cheese, milk, and yogurt.
“Many of Cerrone’s choices were self-prescribed based on her own symptoms, and the guidance of her allergist, since there was no medical guidance at that time.”
“I went through years and years not knowing what it was and trying to raise my kids while having anaphylaxis all the time, always being sick with things like rashes and GI issues,” Cerrone says.
At the age of 32, Cerrone was told by her orthopedist that she had the arms of a 65-year-old man.
When I eat mammal, especially dairy, it causes systemic inflammation throughout my body, especially in my joints.
“A condition called tachycardia is a condition in which a person’s heart rate is usually over 100 beats per minute.”
“By the time her youngest child was 3 years old, she had found an allergist who could recognize her allergies, but alpha-Gal syndrome still hadn’t been named.”
We called it a meat allergy. It was called midnight anaphylaxis because it can take between 2 and 8 hours for you to have a reaction to it.
“The delayed allergic reaction was a big problem for doctors who were used to immediate reactions. That really ended their lives. She says they didn’t know what to think.”
Cerrone has adopted a mammal-free diet to help manage her allergies. She does not make allowances for poultry or seafood.
It can be difficult to navigate poultry and seafood. When it comes to meat, you have to be careful with seafood and chicken because they inject them with things.
Shrimp gets injected with a substance called gelatin. The same thing can happen with turkey and chicken.
The smells from certain foods can cause allergies. She notes that her reactions to them have included a rash around her eyes, blisters around her jaw, dizziness, and blood pressure drops.
It has become difficult to walk down the street in the neighborhood by fast food places. The places where I go to cook are places with mines for me.
“In case of emergencies, Cerrone carries an EpiPen with her, which she doesn’t use very often.”
It is difficult for people withume allergies to join in celebrations like Thanksgiving, Christmas, or weddings.
“People can be afraid to invite people with alpha-Gal syndrome to dinner because they don’t want to cause harm. This can result in a loss of social connections.”
Traveling on a plane is not something that I can do because I can not get help if someone opens a sandwich for me.
People with alpha-Gal syndrome typically avoid meat like beef, pork, lamb, venison, goat, and rabbit.
If symptoms persist, we move to dairy elimination, followed by avoiding all of the above, and cooking fumes.
Commins says that some patients need to eliminate cat and dog exposure. This was true in the case of Cerrone since she has been allergic to dogs and cats since she was a child.
It can become even more specific, such that products carrying the label “natural flavors” are avoided. Even wines that are clarified with bone char may need to be eliminated.
A lot of people with AGS struggle with the changes. You grieve the same way you grieve your loved one, just like that. There is a lot of anger, there is grief, and there is denial.
When things get bad, she takes Xyzal and Allegra twice a day. Another emergency option is Unisom melt, a non-mammal over-the-counter aid that offers similar relief to Benadryl.
“People with alpha-Gal syndrome have to be careful about other things, like food allergies. Paper goods like toilet paper and women’s hygiene products can be problematic because of the process that makes them white.”
Since many medications contain mammal ingredients, Cerrone has to watch out for reactions to them.
“The use of magnesium stearate, which is from pork, and the use of cow’s milk-derived product, called gelatin, are two examples that Cerrone gives.”
Beauty products can be problematic. I have to use vegan beauty products, vegan hair care, and just really be on top of it, because goutrin can be in so many of our beauty products.
Lactose, calcium, and a variety of other things are included in the long list of ingredients that Cerrone has.
Almost every packaged product contains mono and diglycerides, which are usually from pork and bovine products.
“Most people don’t know how much mammal is in our products. There are so many things that I have to avoid. The whitened and refined sugar is usually passed through the bone char from the cows. You have to find brands that don’t do that.”
It can be expensive to purchase products that are safe for an alpha-Gal allergy. $200 at the grocery store for someone else could be $350 for Cerrone.
A loaf of bread is $7 or $8 for me. She says it becomes difficult to keep a budget when you have to buy everything in this way.
She had to wear a mask after her fume reactions flared up about 6 months before the COVID-19 epidemic started.
Everyone was wearing masks after the Pandemic hit.
People would look at you funny if you wore them outside of the house, but that is no longer the case.
“It was almost like people were getting a taste of what life is like with alpha-Gal because they were stuck at home and couldn’t go out and be social. As people take off their masks, Cerrone will need one.”
“It is harder to find products without certain ingredients in the supply chain. Companies haven’t been as transparent about their sources, and there can beContamination with mammal-derived ingredients.”
The biggest problem with the Pandemic is the issue with medication. 95 percent of the medications that they would use would not be able to be used if I were to end up in a hospital with a bad case.
Cerrone opted for the Johnson & Johnson COVID-19 vaccine for her first vaccine shot because it didn’t contain mammal ingredients.
“When she got her Pfizer booster, she was worried that many medical professionals wouldn’t know how to treat an allergic reaction.”
“They expect you to react immediately and then send you home if you don’t. She sat outside the emergency room for 4 hours because she had a delay in her reaction.”
“After the booster, she didn’t feel great for a few days, but she didn’t have any emergencies.”
If you think you have alpha-Gal, you should go to an allergist, but be aware that not everyone in the medical community is familiar with the condition.
Commins advises those with symptoms that seem to match AGS to have a blood test.
“If you can’t get a blood test, he recommends avoiding meat and other mammal-based foods for two to three weeks for a better understanding of whether symptoms are associated with eating red meat.”
There is no current treatment for AGS. The good news is that the allergic response often fades over time and if a person has no or few additional tick bites, many patients have the allergy resolve after 3 to 5 years.
The clock tends to reset when a tick bite happens, prolonging the time to resolution. Some patients never seem to get better.
There is some promising news on the way. Commins says that they are working on a treatment to help prevent the issue with additional tick bites.
Ask them for a blood test if you are treated like crazy. It was 5 years ago that they came up with a blood test that made it possible for me to get a little respect. I can tell other people that I have a blood test.
Some people with alpha-Gal have tried an acupuncture technique that is in testing to help with symptoms.
A lot of people swear by it, and it is being looked into. According to Cerrone, others in the community have reported becoming more sensitive to allergies after the event.
A small
Commins usually tells patients that there are no randomized studies to be had, but that double-blind studies are available.
Cerrone also recommends joining the community of support groups that can be found on Facebook, such as The AlphaGal Kitchen and Alpha-gal Syndrome.
We hit 100,000 on one of the Facebook pages. It is 3 percent of the American population.
We have over a million people. Corporations need to include us in their ingredients. It is time for the medical community to include us. It is time for a million people to get help.
