Thanks, it’s informative for the rest of us. Very weird allergy. Those evil ticks.
I just saw this topic for the first time. I would like to extend my best wishes and hope that everything goes well.
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Thank you all for your concern
Although I had been diagnosed in October with positive alpha gal ( grade 5/6) I am not entirely convinced that I have the syndrome as I have never known myself to have a reaction to red meat. The Doc did the test because I told him I seldom take sleeping in answer to his asking me if I need a script, unless I have severe rash similar to what occurred one day in 2018 (? our visitor from Netherland told me she was here when it occurred so, must have been during her visit sometime in Feb 2018 or between Aug 4 and Aug 29)) but I do not know what I consumed that night for dinner . She confirmed that during her stay we have had a lot of red meat including twice when we had smoked pork which is supposed to have lots of fat and triggers anaphylaxis in persons with alpha gal. 50 mg of Benadryl and a sleeping pill with heat finally allowed me to go to sleep , woke up the net day sleepy with residual rash but that was all. I am familiar with alpha gal syndrome but the dot had never connected since I have had history of allergy ever since I was a child and am allergic to a lot of insects, anaphylaxis to yellow jacket bites, epic shots, and sometimes trips tp ER, had continued to consume red meat since our friend visited without problem. I am allergic to a lot of food, ( raw carrots, celery, uncooked peaches , bananas, cantaloupe etc etc), react with laryngitis ( swelling of my throat and VC), lips and tongue.
Test now shows I not only suffer from allergic rash ( which I think happened that night in August ? ) but non allergic rash (autoimmune reaction ) . However, my allergist is reluctant to give me a food challenge , advising me to see Scott Commis in UNC ( takes 6 months for appointment), to withhold eating red meat and products for 6 months , try not to be bitten by tick in the garden ( I work outdoor in garden 8-10hours weather permitting)
So, at least, as of last week, even when I have positive IgE to milk. he is allowing me to use milk with my coffee and I am eating cheese. now. NO real ion s far except my usual hives . Our guest is returning from the Netherland on Dec 20 , one of her favorite dessert is almond float with lychee. Of course almond float is made with gelatin. The Doc has allowed me to consume a little. Dairy Products are allowed unless one is super sensitive but if one base my high alpha gal IgE, , I am supposed to have the highest seen by my allergist.
Hope this will benefit whoever has AGsyndrome out there.
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thanks everyone,
I am coping but still distressed, miss my pork mostly
Have been buying a lot of D’artagnan’s duck meat, specially duck saucisson to eat with cheese and as sandwich with some arugula and vinaigrette. o
Recently posted purchase of maple leaf farm duck ( duck breast without skin for stir frying, ground duck to take the place of ground pork, duck bacon, duck sausage without the pork beef casings, cooked duck wings , ope it is crunchy and cooked duck tenders dusted with almond powder)
also found a site to order wholesale quail ( 12 0 pieces of quail French quail legs lollipops for $142 ) from marxfoods.com. They also have boneless quail breast , 120 pieces for $157.00 Shipping is free and each piece individually wrapped. I like whole duck but am still hungry if I eat 2. Giant does have very occasionally semi boneless quail but it is very very expensive. So, that will be my next order from Marxx after I taste all my duck appetizers as Maple leaf duck farm has their appetizers on sale, 20% off thru Jan 25.Also have 5 racks of ribs I cam smoked give me more space in freezer. I still will buy my alf duck made by maple leaf farm thru Costco as their advise ( never without them ) as Costco is cheaper than them. They have a 10% promotion for new customers as well as promotion code thru Facebook if interested.
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How long does this special diet need to last?
In some. people, it is lifetime allergy.
Yet, in others, IF there is no more tick bite, no more red meat consumed, there are cases the alpha gal CAN be temporary, after 2-3 years. However, test has to be redone and I will go and repeat these tests to see if the numbers are coming down April, ( 6 months after I stopped consuming red meat)
However, more tests performed ( recently released in 2017 after years of experimentation ) confirmed that I also have autoimmune disease in which case, my body’s immune system thinks that a lot of food or environmental factors ( grasses, dust, some plants as those with thorns - I became allergic to the thorns of roses back in the early 90’s , so hundreds of roses were eradicated from my property., ) are mistakenly tricked into thinking that these are antigen , attacks them by making antibodies against them.
Interesting enough, the tests that show I am allergic to pork beef and lamb were positive not only thru alpha gal but also positive this other new test. I asked the allergist if perhaps my allergy pork, beef and lamb is not a result of alpha gal but from this other test that were positive. He says they are two separate allergies and if I want to contest that by oral change, we have to go to see a judge if he decides he will gives me oral challenge to absolve him if I do suffer anaphylaxis bec my numbers are too high for him to take a chance. Read below for more understanding. I hope it helps others to understand.
I’m really sorry you’re having to go through all this.
Have you tried different dried/cured/smoked poultry products? (I’ve mostly seen duck) Just to change things up a little for you - I find cured and smoked duck has a more “meaty” flavor and mouth-feel, which may help with any cravings and/or monotony . . . . . I wish I had sources for you . . . .
On a total “non-personal” level - the immune system is a wild and fascinating system. While I understand auto-immune and alpha gal are devastating - they are also completely fascinating to read about. What is the body thinking? It’s crazy how our bodies can “go wrong”.
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Have tried smoked duck and turkey way ay long time ago before I invested in a MaK 1 smoker which I love but mostly for pork butts, ribs, brisket ( only by request as it is great but not my favorite and when I do, I have to go to Costco to buy the biggest brisket ) , smoked fresh bluefish ( best when it is freshly caught ).
I do buy a lot of D’artagnan’s duck breast, duck confit and now, convinced my local supergiant to stock duck and wild boar saucisson
I plan to smoke my duck breast when I am ready to smoke either the butts or a few ribs as I tend to smoke when we have guest but son often ask me like this past Friday that his friends are coming for 3 days and there is not enough time for me to defrost, process etc. Also we had snow . I want to try and make duck pastrami. I have the recipe somewhere.
I you saw my latest HO article, I found a site for quail. and have bought duck breast etc from maple leaf farm which I like . They were delivered and I did try their duck breast stir fry and ground duck to make shrimp and lobster sauce.
Oooppppps! Reply was meant for you
At some point I had a duck prosciutto that was very “meaty” too.
Looks like dartagnan sells one too.
Sounds like you are way ahead of this thing from a cooking perspective! I see a cookbook in your future 
I’m glad that you are looking for different meat alternatives. Interesting to know that you can consume wild boar, you mean all the game meat?
I have never followed any cookbook in my measurements and in my cooking. However, in the early 70’s, 73-'74 to be precise, when my husband ws diagnosed with non tropical sprue ( gluten enteropathy), there were really very few ready made gluten free products. It was very nice of NIH to accept him as a patient, saved his life so, I often bring food to NIH as well as accepts call from any of their patients for cooking ideas. NIH suggested that I publish a gluten free cookbook, encouraged me to do so but I was really very busy with my full time practice, a son who was born with congenital hip dislocation and had to be reduced, hip social and abductor splint for 18 months. Life was tough for me, esp when my husband enjoyed eating . I was told then that celiac patient usually have nasty temperament bec they are not able to eat many kinds of food. My husband had enjoyed a life that is devoid of any wants ( except fried chicken as I hate to fry in my kitchen even with a fryer that I bought with some kind of charcoal filter, it usually makes the house smelly). I baked bread, learned h ow to cook with 7 kinds of flour to make him the best butter pound cake one can have, sticky rice flour dessert etc etc.
I do not regret my decision but nowadays, there are loads of gluten free cookbooks as well as gluten free products. I stopped baking bread when we found Whole Food’s Prairie Bread that were absolutely delicious .
I think I can find recipe for my ensemadas which I used to bake, still have the small pan brought home from the Philippines that friends crave for. I would make 48 at a time . It takes a few. hours but it is really worth it if one can stand the cholesterol. A colleague, whose husband was the chef for the Sequoia during Kennedy 's time shared that recipe with me. I can dig it up if anyone is interested.
That’s sad… can you test one meat each time to see if you are still allergy to that, this will give you more choice of food.
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The allergist does not want to agree to a food challenge even if I park myself at his office after ingest pork ( my favorite) as my numbers are the highest he has ever seen. He claims he has seen patients with lower numbers, ended up in intensive care and ventilator. In addition, there are people with positive alpha gal that reverses after 3 years IF they do not eat any red meat from 4 legged animals as well as not get bitten again, so my gardening days are now questionable. Aside from positive alpha gal for those red meat, I also have autoimmune disease and am positive for a lot of food and environmental issues , with positive reaction to beef, pork and lamb ( which is acc to allergist a different issue altogether) so I think I have to lay low. Just found out the other day that the greek yogurt I consumed gave me hives I looked at the fine prints , it had carrot juice , raw carrot I am allergic to! Well, that is life. I am glad I am not allergic to my babies though I am really allergic to cats !!! Early on, we have a visitor ( her husband is one of our contractor and she comes to visit with him sometimes) who wears the most intense perfume and every time she is here, I have asthmatic attacks. My husband was very careful not to offend her and asked that she not cause problem for me by using perfume when she comes ( she sells Mary Kay products ) Hah! Hah!
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These days, I suppose you stop gardening?
thank you nan for posting this.
I had always had problem with allergy, as a child, I suffered from Asthma, later, on arrival to US, severe hay fever. Food wise, I cannot eat raw carrots, and a lot of fresh fruits without my lips, tongue and V Cord becoming swollen.
Became an avid weekend gardener when I got married, but when I retired, spent 8-10 hours weather permitting outdoor gardening. I had always been allergic to wasp, bees etc, having severe reactions, need epi- pen or trips to ER. Also allergic to cat ( this has been proven to people with alpha gal-cross reaction allergy) 3 years ago against County code that I cannot cut down any shrub or trees bec I live in a critical designated area in Maryland, I had a beautiful 30 foot persimmon tree cut down bec the fallen fruits re invitation for yellow jacket . A neighbor 2 doors away had been attacked by yellow jackets and had to be rushed to ER. I called the 3 adjoining neighbors on each side and told them my intention and if any of them report me, I would be fined $10,000. None of them did . Yes, the tree is beautiful but I dare not go near there and they do fl to the neighbor’s property as well. The county has no empathy. They had forbidden someone that lives in a cliff to kill some rare insects whose nest were eroding their property and based on how fast the cliff was eroding, their house would fall into the bay, but their plea had fallen on cruel officials.
October 2018 , got diagnosed with alpha gal, but Commins cannot see me till March, which would be difficult driving to NC , not knowing if my son would be home on that particular day, and what happens to my babies? I was not aware that NIH had an earlier seminar with Platts -Mills and Commins before I was diagnosed, or I would have gone. NIH is just a stone throw from my practice. It is there that my husband was diagnosed with gluten enteropathy in 1972 when it was unheard of.
Aside from alpha gal, another test that became available to laboratories in 2017, a test for Chronic Urticaria that I seemed to suffer since childhood. A diagnosis of Autoimmune disease is made when the numbers are high, meaning that the non allergic urticaria is not just from being exposed to certain allergen. In persons with autoimmune hives, the IgG autoantibody that binds to the Fc-receptor tricks the mast cell into believing that the IgE on its surface has encountered an allergen. When this happens, hives or tissue swelling can result. I have been diagnosed as having autoimmune disease, which is allergy to red meat also. . My doc tells me that is separate from alpha gal.
Only Dr. Commins can possibly tell me whether my allergy red meat is from autoimmune disease , from alpha gal or from both. At the moment, I am trying to not eat any meat or product that comes from these 4 legged animals. I can use milk in my coffee and can eat cheese and occasionally eat ice cream but I would like to have my test redone after April, hoping my numbers are down and maybe I may be one of those lucky ones whereby my alpha gal syndrome is temporary? I would not mind having hives from eating pork ( my favorite) every once I a while as long as it is just urticaria without anaphylaxis.
To sum it all, docs and everyone has to be made aware of this. I am having eye surgery in two weeks. I am supposed to take omega rich fish oil as prophylaxis for dry eyes. I went to Costco, they have 5 different kinds of fish oil. All of them are in jel form. I was told by the pharmacist there are no such thing as fish oil in tablet form. Googled, and found out that I can find fish oil high in omega acid in 2 kinds of fruit forms from Vitami supplement store I chose lime juice which I am not allergic to.
I guess I cannot have heparin for major surgeries and colon cancer or heart valve transplant if the valves are from pigs.
This is quite lengthy but. you can move it to another section.
It is surprising. how some people are turned off with this subject. I know there is a support group in Calvert County for people who suffer from alpha gal. My neighbor came and rung my doorbell a week ago to tell me that another neighbor has passed away. I told her I have not been in the garden bec of alpha. Well, she told me her son in law was diagnosed with alpha gal. I asked if I could contact him and perhaps he is with the support group? She would not divulge any info to me.
Thanks for info
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I am scheduled for Cataract Ext IOL and stent insertion for glaucoma next week
Suggestion is that I start taking high omega acid fish oil as well as preservative free artificial tears to avoid dry eyes.
Well. there are many kinds of fish oil ( 5 to be exact) that comes in gelcap at Costco alone, but there is no such thing as fish oil in tablet form
I found this at a Vitamin shop in Gaithersburg , Md
So, for all th one who have alpha gal and cannot make gelcap, this can foot the bill
Good luck! Hope everything goes well.
I think you’re right, I don’t think a tablet would even be possible. But there are quite a few brands of good fish oil available “straight up” in a bottle without using gel caps. Check the levels of EPA and DHA they contain; some are more concentrated than others, or have them in different proportions. For some purposes, the EPA matters more, for others the DHA.
If one brand doesn’t specify those amounts, probably get a different brand.
