Diet suggestion for alpha gal syndrome ( lone star tick bite )

Today is a devastating day for me.
I do not know what will happen but test result came back today shows I am positive for alpha gal, that means I was bitten by lone star tick and considered a risk if I eat red meat, as well as possibly products like milk, gelatin, even medications that contains gelatin. It can cause anaphylaxis reaction.
I vaguely remember writing about this once on Hungry Onion when I found out a friend was diagnosed with this syndrome. There was no response from anyone so, it was dismissed as an interesting topic .
Went last Tuesday for routine physical . Internist asked me if I need refill of zolpidem ( sleeping pill). I told him I seldom take it, still have meds but perhaps may have expired. I told him I only take it when I have to take 50 mg of Benadryl for allergies as Benadryl more than 25 mg gives me panic attack. Explained that this past spring, I worked outdoor and had rash almost every night. One night, about MN, my rash was so widespread, had angioedema .
Unknown to me, one of the tests ordered was alpha gal which came back positive. I did not associate my rash from allergy to red meat as I have not had any reaction since summer. I am still consuming a lot of meat, mainly pork. I very seldom eat venison as those are reserved for my poms.
This is going to be very hard on me.
Anyone has had that problem or is aware of any more than what I have just read?
My Doc just emailed me that some people will gradually get over it after a few years if I do not get bitten by lone star tick.
When I found out my friend had this syndrome, I googled and found out it was diagnosed on another patient in my County. A friend of my son came to visit last September and had the same reaction.
I hope there is a particular test that will identify the particular red meat. I would not mind if it is beef, lamb or venison but I am fond of pork and wild boar.
Thanks for input from anyone.

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So sorry - that sounds tough. I am sure you will rise to the challenge and continue to eat well.

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I have no experience with this ccj but I hope you get good medical advice and answers to dietary needs.

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So dreadful. I hope you can bust through this to a return to good health.
God be with you!

Please take good care of yourself. You have the cooking to chops to find delicious ways to eat nutritiously with a limited palette of ingredients.

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Sorry for the allergy. Hope you find a way to adapt to this. It seems that it would not last forever, but not easy to avoid if the ticks are in the garden or nature.

Curious about the fact that you didn’t have problem with red meat before the test results arrived. Could that be other food?

I never thought I had problem with red meat.
I do not remember what I ate that spring night when I had an anaphylactic reaction. I thought it was one of those usual allergic reaction since I am highly sensitive, often has rash or wheezing when exposed to certain allergens.
Have been comsuming red meat without problem since then.
However, reviewing Dr. Scott Commin’s report ( he is Assistant Professor of Rheumatology at UNC, one of the leading authority on alpha gal, correlating the syndrome to lone star tick bite ), he states that people who are allergic may not have reaction every time they eat red meat, but if they do, which happens 3-4 hours after consuming red meat.By red meat, he means meat from animals that have 4 legs and hoof. ie cows, pig, lamb and venison. it can be life threatening so his advise is to avoid red meat altogether for at least 18-24 months. . He also states that the test is very sensitive, not specific, that not all positive result means you are allergic to red meat but suggest that one avoids it because of the risk involved, retest after 18-24 month as it can be a temporary rather than a permanent problem .
Some people who has allergic reaction has less problem consuming lean grass fed organic beef. Those who are more sensitive even reacts to milk, and ice cream,
I am not sure what I am going to do about my diet yet as I had hope that I am one of those who happen to have a false positive result.
I had already prepared my lunch of garlic bread and hot sausage from Harris Teeter before I received my test result. So, I took the episode pen out of the cabinet, left it on the counter, just in case.
It has been 7 hours since my red meat consumption, so I am free for now as reaction typically is seen 3-5 hours postprandial.
Hopefully, in the future, there will be a specific test for alpha gal syndrome and desensitization as well.

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That would be tough if you’re a person who really loves steaks and burgers. If that handful of animals is the only restriction, stop to consider all the other yummy little critters there are. Rabbit, duck, chicken, turkey, quail, fish, shellfish, crustaceans …

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If, as you say, you are consuming a lot of red meat and haven’t had an adverse reaction to it, then what is the problem? From what I understand, the alpha gal syndrome can indeed be an issue, but it’s pretty clear immediately if it is going to be a problem for you or it’s not. It doesn’t have to be.

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At the period of rashes, did you use any medicine that could contain alpha gal?

I don’t know if it is useful, but keep tracking with a diary each food and the quality might you consume be useful. As I saw in wikipedia, some skin allergy happens much later than the 5-8 hour window.

Do your dogs have anti ticks treatment?

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Oh @ccj, I am so sorry to hear this. As others have said, please do take good care of yourself. So many other foods to savor and you cook so beautifully.

As an aside, this year we very reluctantly had our yard treated for ticks.

We adopted a rescue dog and were pulling multiple ticks off her daily. When I found a tick crawling on me we took the decision. (Husband: “Is that a birthmark?” Me: “No!”) Things were getting worse as the weather warmed. We still have bees (pollinators) in the garden, which I had been worried about losing.

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none of my meds has alpha gal as ingredient.
dogs have no ticks at all , if there are, they are already dead when seen.
I groom them daily
The poms have their monthly treatment with frontline plus without fail . I answered chowdom as to why 3-4 hours window etc. I am not sure if you can see the answers.
Most of the alpha gal syndrome are within 3-4 hours window unless the patients are receiving medication per intravenous for metastatic colon cancer. (cetuximab (Erbitux). The response is rapid, usually within 20 minutes.
Friends came over for lunch so I cooked shrimp sautéed with lots of garlic, a tin of anchovy and chipotle sauce. This was added to oven roasted tomatoes with EVOO, Italian seasonings and topped with Feta Cheese ( I suppose I cannot eat Feta Cheese as it is a byproduct. of 4 legged hoofed animals).
Yesterday for lunch, I had hot Harris Teeter pork sausage with French garlic bread. I did not have a reaction. I do have a rash on my back but it has been there so a while. I showed my friend, she says it is an old bite.
so, I will keep track of food intake and rash but I still am going to work in the garden. Have not decided whether I will follow strict diet regimen. Perhaps, I will nto eat beef but when son returns home, I have to cook pork , bison. Chicken ,Duck and seafood cannot be exclusively our diet . So, it will be hard.
I am still reading medial reviews. My guest has a friend who was diagnosed a year ago. She will ask if we can get in touch with each other
Thanks for concern

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I took the episode pen out of the cabinet

I certainly don’t mean to be critical, nor even merely pedantic, but since calling it an “episode pen” might possibly confuse someone when you need to replace it - or if you have to quickly communicate to someone else that they need to administer it for you if you’re (hopefully never in the position to be) unable to do so yourself - I just want to point out that the “epi” in “epi pen” is short for epinephrine, the active drug it contains, not “episode”. People familiar with them would understand “epi pen” right away, but “episode pen” might be momentarily confusing at a time when every second counts…

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so sorry for the typo error. Mia Culpa
It seems typo getting more frequent as I am due for another appointment in December for possible cataract surgery but waiting bec I may also need surgery for possible increase intraocular pressure. My Doc would prefer to perform the surgeries at the same setting.

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To All Co Hungry Onion Friends
Thanks for concern and encouragement
I am being vigilant and had started a diary on food intake and reaction.
Last night, I woke up with some rash on my abdomen. The rash did not bother me , I just examined. myself when I woke up for possible rash.
However, I was out trimming a Dwarf Weeping Norway Spruce with the help of a friend . I pointed out the branch to be trimmed as I am allergic to a lot of conifers and she actually did the trimming. I also tried to spread some milorganite fertilizer on two of my dwarf prostrate weeping spruce. I Am not sure whether that rash is contact dermatitis as that has been a minor concern since shaping my plants had always been more. important than some rash. I remember we had to eradicate over a hundred roses bec I became very allergic to them. Dwarf conifers are a passion for me and thus, I cannot let them go. But now, rash has became a differential diagnosis for me as to whether it is contact dermatitis or alpha gal syndome. My friend shared the dish of shrimp, tomatoes anchovy with feta cheese for lunch, and I had the left overs for dinner. Dr. Scott Commins did not mention cheese as possible antigen but I will research more.

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I can help there.

I had cataract surgery this summer, with two weeks recovery between the left and right. Both went swimmingly and the Dr commented that I recovered better than he’d hoped. Don’t put it off…It’s nice to be 20/20 after being 20/400 all my life.

After my recovery, they confirmed the pre-surgery suspicion thst I also have glaucoma. They scheduled me just a week apart for that, and I started my new job just 2 hours after the procedure.

Both are easy, with very manageable discomfort, and I don’t want to go back to faffing with glasses and contacts.

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Yes, we are thinking of you!

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Thanks Sunshine 842

I have been involved in thousands of cataract extraction as an anesthesiologist . Also in trabeculectomy for glaucoma.
However, my intraocular pressure when checked in June was high normal, with normal retina scan. My ophthalmologist who worked with me for many years plans to do a combined cataract ExPRESS miniature glaucoma shunt if needed depending on repeat scan in December. If the latter is not indicated, just cataract extraction

I know he surgeon very well. This combined procedure wil take him just a few minutes extra.
In the meantime, between m eyes and ulnar dystrophy and OA, typing becomes more difficult especially with a lazy person like me.

How do you treat your yard with ticK/
I know my husband refused to have our property sprayed with mosquitoes
Rather, he added mosquito eating fish into our pond.
FrontlinePLus is very effective against ticks.
We have to apply the medication without fail on the same day every month.
The 1st ingredient fipronil , kills adult fleas and ticks. The 2nd, ( S)-methoprene , attacks flea eggs and larvae. They work together to kill all month long.
I also have permethrin spray which is a neurotoxin that kills ticks and lice
However, I stopped using it bec it advises one to wash clothes gently
Well, when I work in the garden, my clothes are filthy, if not muddy.
Because of OA. I often just sit on the ground.
Have to resort to sanitary wash and guess what happens?
The clothes tear very easily
I guess I ma have to return to using it again

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I am sure that your son will support whatever the best diet is you need to follow in order to stay healthy, even if that means all chicken, duck and seafood. Which quite frankly certainly leaves open hundreds if not thousands of delicious dishes you still can eat. It’s all about your point of view :))

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“Food is a pretty good prism through which to view humanity.”

― Jonathan Gold