Every single one of us is different. Beef plainly wants me ill, but dairy and cheese is fine. So is pork.
I would see an allergist, what you are enduring might be allergies plus crohns or ibs. All or any are miserable, and you need to know.
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I don’t have this syndrome but I do have severe food allergies and had to completely change my diet. The first year or so was difficult I had meltdowns and I had some depression. But it got better, I love to cook now and have a freezer and pantry stocked. Because cooking my food can be more complicated I tend to cook larger batches and then freeze it in containers. It’s a life saver to have a selection of ready to heat meals.
From a shopping perspective Trader Joe’s has the best labeling of food ever. They include the source ingredients as well. One of my allergens isn’t legally required by the fda to be included in the label but Trader Joe’s does. I have to drive further and stock up but it’s worth it. They also have lots of vegetarian options that might work.
Aldi is also nice for me because as a European based store a lot of items are made with less ingredients than most American stores.
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Just wanted to mention that I have had Alpha Gal for 10 years now. I was diagnosed by a board certified Immunologist at a major university hospital, which I had to travel to because none of my gastroenterologists could figure out why I was so sick for years.
I did have a bout with Rocky Mountain Spotted Fever as well, and it may or may not have been the same tick (probably not, I’ve been exposed to quite a lot of tick bites over the years living in woods and having dogs.)
Anyway, fast forward 10 years, there is more awareness of this condition, and more foods that are safe for us, which wasn’t true back when I got it.
The numbers on test results do not seem to “jive” with how sensitive people are. I have met people with much lower numbers than I have, and yet they react more severely than I do. I have the “subset” of AG which is the gastrointestinal meltdown kind. I have never had the other kind where throat closes up, anaphalaxis, etc. I do carry an epi pen.
I would say keep a food diary and dono’t necessarily rule out certain things as we do not know exactly how much some of these excipients will work for some AG people (like vitamins in gel caps, carrageenan in ice cream and other products, and/or milk/dairy products (most milk productss don’t have very much alpha gal at all after processing), and medicine coatings like magnesium stearate).
These are all items that you will have to test individually. Many people CAN tolerate small amounts of these ingredients and many AG people have no problems at all with them.
I don’t feel deprived as I never ate much “red meat” to bein with, and prefer fish and fowl anyway. I eat a lot of ground chicken and ground turkey and make many delicious recipes using those, just as I would use ground beef or ground pork. Most processed foods are not safe for us unless you have a good eye about ingredients.
Really is not that resrictive compared to people who have diabetes, celiac disease, etc. so I guess I feel lucky. .
ONE THING I would like to bring up: please prevail upon your legislators, etc. to make Alpha Gal reportable to the CDC, like Arkansas did. They were the 1st to do so. Why? Because the numbers they had did not fully represent the number of people who actually have this.
As we know, the more people who have it, numbers drive grants, research, advocacy, development of medications, and general awareness. ( I am amazed how many people in medical practices never even heard of AG and it’s 2024! )
TBC United has a website and they have template letters and a list of your reps you can send to. You can also pin point your location on their map so that helps to know what regions and states this is most common in. As well as a lot of good info on Alpha Gal Allergy.
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The Lone Stars have taken over Chilmark and Aquinnah! 
I’m now super anxious about spending time there in spring and fall – though I saw nary a tick on my corgs or myself when I was down for two weeks in August.
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I thought the same thing and had to google it. 
@4horses So sorry you’re going through this. I have Celiac so understand how overwhelming a new diagnosis is.
I remember my first trip to the grocery store after hanging up with the doctor who told me the diagnosis. I kept looking at labels and saw that gluten is in so many products, not just bread and cereals. I actually stood in the middle of an aisle quietly crying, thinking “what am I going to find to eat.” My two big vices are chocolate and ice cream. Once I realized I could eat those (well, most brands/flavors), I calmed down and started thinking more rationally and realized there were still lots of things I like that I can eat.
The cookbook recommended above sounds like a great place to start. Also, my doctor sent me to a nutritionist. She had lots of info on gluten-free eating that really helped. Maybe a nutritionist visit could aim you in some good directions, also.
It is an adjustment, and there will always be things you will miss Soon, though, it will become your new normal and won’t feel so overwhelming.
Hang in there. {{{Hugs}}}
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This.^
Trying to eat out with a food allergy is no longer something I enjoy. I only do it when I can’t get out of it and normally eat before we go in case I can’t find anything “safe” to order. With cross-contamination concerns, it’s rare to find something I feel comfortable about. I’ve become an expert at sipping a beverage slowly and making ice cream look like a meal.
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@draftxfan mid august tends to settle the ticks down for a bit so you picked a good time to visit!
@Fiesta01After my celiac diagnosis I did the same thing. I stood in the grocery store and cried when I had to read every label and then kept putting things back. Its now been about 15 years and its just no big deal anymore. But its a huge adjustment to be sure. The one thing that’s different for us is labels almost always call out gluten. The alpha gal labeling doesn’t exist so its harder going.
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I can live with a limited diet. It’s not fun, but it’s not a huge concern. I have become fume reactive and that’s a much harder thing to control.
I still get hives especially on my face and sometimes the wind blowing in my face (and whatever pollen is in the wind) is enough to make me itch.
I keep getting inflammation in my intestines. Not enough to be considered inflammatory bowel disease but enough to make me feel miserable for a couple weeks at a time. I went on antibiotics but I’m not sure that helped. Right now I’m feeling better again but I’m not certain how long that will last. I’m trying to get in to see a GI specialist but they are backed up 6 months on appointments. I’ve been seeing the nurse and had an appointment with a doctor for December 4th but they canceled it without explanation.
It’s definitely aggravating. I do wonder if the GI issues are linked to the alpha gal or if I have developed additional food allergies that I’m unaware of.
My allergist put me on Xolair but I’m wondering if we need to add one more medication like Singulair.
I’m assuming there’s some sort of underlying autoimmune issue or mast cell activation but my current doctors have no idea how to help.
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My AGS triggered two autoimmune diseases. One is chronic urticaria and the other is Hashimoto’s. I take antihistimine everyday to keep the CU under control. I also try to eat a low histimine diet (the FIG app really helps me with this). I have found that when I eat high histamine foods, I tend to have GI issues like heart burn and acid reflux. When I eat “clean” my symptoms aren’t present. The doctors have not been terribly helpful, all they want to do is prescribe more meds to eliminate the symptoms instead of preventing them. I even tried working with 2 different dieticians, but they didn’t really know how to help me either. I have found that I am more sensitive to corn products too. I can eat them, but not too many meals in a row. Its almost like my body can take a certain amount and after that I start having issues.
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Have you tried a DAO (diamine oxidase) supplement? To help break down the histamine.
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Not yet. I have read up on it, but I have not followed through with trying it.
A board-certified internist suggested that I was possibly deficient in enzymes to break down histamine from foods, and recommended a supplement to possibly help.
I haven’t tried it, because I prefer avoiding certain foods. I noticed that webMD stated that some DAO supplements are made from pig kidneys, but I don’t know about others.
When an allergist explained about Oral Allergy Syndrome (OAS) during allergy testing last year, that opened my eyes as to what might really be going on in my particular case.
Best wishes that you obtain some relief – Alpha Gal sounds like the pits.
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Isn’t it crazy how corn and derivatives are in everything? Xanthan gum, biodegradable containers/cutlery, in vanilla extract, etc. It’s mind-boggling, truly, how many “gotchas” there are with corn!
Hope you feel better!
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I can’t eat anything with corn either, it started about 15 years ago. Between that and my soy allergy and other sensitivities, it’s hard to eat. Add me to the crew who has stood in the grocery store and cried.
I get hives on my face too and and react to fumes. I have a strange rash. No doctors can sort any of this it out. They were sure it was mast cell but it wasn’t. I have autoimmune stuff so somehow it has to be related.
I’m just rambling here and don’t have anything helpful to add. It’s just comforting to know I’m not alone.
Jingles for all who are food challenged. Man, I wish I could go out to eat just once.
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