Alpha-Gal Syndrome: From Diagnosis to (Ingredient) Detective - FARE Webinar

This webinar provides an overview of Alpha Gal Syndrome (AGS) - the tick-borne condition that upon exposure to galactose-alpha-1,3-galactose (“alpha-gal”) renders patients allergic to mammalian meats and the myriad by-products that contain mammalian-derived ingredients (e.g. pharmaceuticals and vaccines).
Participants will receive the best available and most current information. They will learn about diagnosis and the key areas of support required for AGS patients of all ages, with a focus on dietary needs and how to be an ingredient detective. The instructors will also review pharmaceutical considerations (OTC, Rx, and vaccines) and social challenges faced by the patient in the workplace and school, with friends/family, and with their health care team. While much information will be presented, attendees will leaving feeling empowered and able to act on the knowledge learned.
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[@christinegofmanas5795]

We need a safe food/ manufacturer list

[@royalstarshanbarnes1221]

I have Alpha Gal syndrome it has turned my life upside down . I have been hospitalised for this so many times over the years I am having a very hard time with this Alpha Gal syndrome please help me I live in Fayetteville Tennessee USA where I was bitten by the Lone Star Tick...please pray for me and a cure “

[@christinaphipps8545]

Honey I have been diagnosed and I have experienced so much abuse from ER DOCTORS AND I HAVE 6 HEART STENTS AND LUPUS. BEEN TO THE ER 5 TIMES SINCE JUNE 11TH

[@christinaphipps8545]

I live in Smithville TN

[@missqt3146]

Oh wow I got bit in tullahoma! I’m currently trying to figure out what Is going on in my body! My tests won’t come back for a few weeks. Dairy seems to be the one allergy I def have because it stinks to me now. Also, the smell of certain everyday things have changed.

[@royalstarshanbarnes1221]

@@missqt3146 I can't eat no red meats or dairy don't nobody understands what I am going through with having Alpha Gal syndrome it has been a life changing diet I have been sick with now over 17 years with Alpha Gal syndrome I didn't know it was alpha Gal syndrome till my Doctor did blood I come back positive for alpha Gal and it's a life threatened food allergy I got bitten here in Fayetteville Tennessee USA from the Lone Star Tick bite

[@nickiemassa5283]

How are you doing now I am from cookeville tn and just got diagnosed with alpha gal. I am so lost not many people..doctors know much about it

[@notagreeable2249]

Great video, I took lots of notes. I live in middle TN (US) and have had problems getting properly diagnosed. I believe if physicians everywhere were better educated on these conditions, quality of care and cost would significantly improve for these patients, and do so fast. I look forward to that day...

[@arttrumbo9496]

Go to Vanderbuilt. They are doing lots of research on Alpha-gal there. I hope you are able to get treatment.

[@getreal4883]

only if they can .are money is what it's all about anymore .

[@talkeetnatattoos]

A lot of people in my area are having great results with the SAAT acupuncture therapy for Alpha gal, I'm really surprised it isn't discussed more. I'm considering it for my son and I soon

[@gingertunstall7739]

I have had IBS for several years now and now I have alpha-gal syndrome. Sorting out what I can eat is a minefield between those two conditions.

[@kiranrasul5515]

And dairy, medicine, and more.

[@debhubbard2970]

Giving up meat is easy. It's the hidden mammal in products that is extremely difficult. Being fume reactive is hard too.

[@scottgarrett1639]

I have severe reactions.. I went a few years not realizing it. Mine has really effected me in multiple ways.. I need to speak with a professional if you have contact information for me.. it has caused me joint issues gut issues and arthritis like conditions.. It is when I eat gummies my symptoms seem more advanced then anyone I have spoken with..

[@darmy713]

This is incredible info. Thank you. Getting treated soon for this.

[@christinegofmanas5795]

Great information . Contacting my insurance re compounding

[@kimpyrant1204]

Thank You for the information

[@toketeng]

Medical practitioner in my country misdignos my symptom of pompolyx eczema...after self research and self dignosed, after bitten by tick, im now of my 5th years of non redmeat eater...

[@notagreeable2249]

what country do you live in? I am guessing you had hives when you went to see the practitioner?

[@lamedvav]

You also precipitate alpha gal syndrome by putting too much tallow skin cream on large areas of your body. Without any tick bites.

[@jenna.w.9041]

Repetitive mentions of the “fair” website but no website link or address?

[@kiranrasul7963]

I was positive for several years

[@kiranrasul7963]

I’ve had it for years too.

[@Am-tl3fd]

Strangely about 5 years ago I started having gut issues, stomach bloating, diarrhea, nausea and then burning in my chest along with food wanting to come back up...seen my primary care and then a gastrointestinal doctor. Had blood work and a endoscopic procedure and was diagnosed with acid reflux, Gerd and IBS. Was prescribed a stomach relaxer, acid reflux medication. Also might I add I had developed aniexty during this time as well. Fast forward about 2 yrs later I started having these strange "episodes" that would come out of no where and last a few moments and disappear....Id suddenly feel dizzy and confused and Id have heart palpitations. So I thought it was perhaps my blood sugar bc diabetes runs in my family and thought it had something to do with that. Well then one day I woke up and both of my calves hurt, they both looked swollen and they both felt sore and heavy. This prompted me to see my primary care doctor....she sent me for bloodwork and then to a cardiologist bc of the edema in my legs and the heart palpitations. The cardiologist had me also do bloodwork...also commented my blood pressure was high...over 180 so got prescribed a blood pressure medication....also before this I did a stress test, a cardiogram, ekg test or whatever its called.. then I was taking the blood pressure medicine and it was dropping my blood pressure too low...so I refused to take it. Then I had my legs both tested for clots and checked out by a vascular doctor...he said I didnt have a vascular vien diesease but did say both my legs both looked to have non pitting edema. He suggested I see a rheumatologist. My heart has two mumurs, the cardiologist said were normal and she saw no reason for concern. Saw a rheumatologist...after some xrays of my hands and some more blood work he stated I didnt have a rheumatoid diesease but said I definitely have edema in my legs and suggested I might have a autoimmune diesease, he suggested I see a allergist bc he said that I know my own body if it doesnt feel good then to not give up bc it could be I have something thats difficult to pinpoint bc my variety of symptoms. Well during all of this I started getting this welts or whats called urtericia. And I would start itching all over, my scalp badly...then whenever I broke out in these welts theyd itch like crazy...and everytime after a shower Id itch so bad I felt like itching my skin off. Well I saw my gynecologist for a routine visit and I told her about everything that was going on and I felt at my wits end bc of all these symptoms and no one could give me any answer's, she told me to go see the allergist it wouldnt hurt to see what they say especially with the urtericia. So I saw a allergist and told him about all my symptoms and shown him the urtericia that plagued me...he immediately took a pen and used it to lightly write on my arm with the cap side....after awhile these red welts appeared where he had traced...said its dermatographia. He did a skin test and my skin reacted to alot of stuff..also bloodwork too....one of them being red meat. Then it made sense to me....once I ate a cheesesteak and my stomach bloated really badly and I had really bad diarrhea...then there was the time I had tacos for dinner with the same reaction...then all the other times where I felt horrible after eating certain things but especially red meat. Then I told him about how everytime after a shower my skin itches really bad....he asked me what bath soap I use and I said Aveeno...he said you have a food allergy to oats thats why. And food sensitivitys to 28 different foods and plants...also cats and dogs too. Im like ummm...how and why?? And he asked me have you ever been bit by a tick and I said yes at least 3 different times in the recent years...with one being about 5 years ago, it left a moutain or pimple like sore spot on my stomach and I recieved antibiotics for it. And he says first off you have a red meat allergy and its from the tick bite, its called alpha gal syndrome, then you have something called histamine intolerance....your DOA levels are low. So basically alpha gal, histamine intolerance, IBS, acid reflux, GERD....and he said its all tied together. So I went on a low histamine diet and ate no red meat as well....I lost 46 pounds in 4 months and yes I was on antihistamine medication along. I found with it I felt alot better, less itchy...and instead of breaking out in itchy hives when my skin reacted it was instead this red blotchy stuff that would appear. And if I forget to take the medicine my day really sucks without it. So my red meat allergy it was severe enough to cause me gastrointestinal distress and make my throat feel tight but Ive never had my throat close up from it no. The allergist told me Id be better off not continuing to eat redmeat just in case it continued to worsen.

[@Am-tl3fd]

Forgot to add that he believes my non pitting edema is from the histamine intolerance, histamine built up in my soft tissue, saying that's why my legs hurt too.

[@itznunyabizz5548]

I haven’t watched all of this however I live in North Central Texas and I was bit by chiggers on my feet in 2019 June, and have been allergic to only redmeat ever since. I’m not sure if you guys knew that but chiggers carry it also

[@lamedvav]

Yes they do. And you can also get it by putting large amounts of tallow cream or lotion on your body.

[@donpilo20]

hello good morning. Excuse me, if I have alpha gal, can I eat fish and seafood or not? Thank you.

[@lisatalev]

I wouldn’t mind so much if all I had to avoid was red meat, but since contracting Lyme, co-infections, mold illness and heavy metal toxicity, I’ve become intolerant to almost ALL proteins. I tolerate seafood and small amounts of chicken, but everything else, including legumes, eggs, turkey, nuts/seeds, dairy, make me super sick! Are you all aware of other tick-borne protein intolerances besides alpha gal? I don’t get the typical allergy symptoms you described from meat, but I always get intense neck pain, migraines, painful sinus inflammation, nausea, viral outbreaks and sometimes vomiting. I react most violently to l-arginine, casein and lectins. Every time I try to eat proteins besides fish & chicken, within 8 hours, I’m sick in bed with severe neurological pain and what feels like a relapse of TBRF for an average of 48 hours. Desperate to figure out what’s going on and how I can fix it!

[@gingerlee618]

have you been tested for it.. we all do not react the same

[@gerimusick6110]

What about fleas, dust mites and bedbugs?

[@notagreeable2249]

I can answer that. I have alpha-gal and am also a certified pest control technician. Bed bugs do not carry diseases. Matter of fact, there are youtube videos that researchers have made where they actually feed the bedbugs off of their own arms to continue researching them. Fleas have historically carried well-known diseases such as the bubonic plague. Like ticks and mosquitoes, fleas go from one mammal to the other, spitting, siphoning, injecting, & transferring blood and blood-borne pathogens. No one is allergic to dust mites, however, their waste is another story. I myself, am highly allergic to dust mite waste.

[@lamedvav]

Yes, you can get it from all of them. You can also instigate AGS by putting large amounts of tallow skin cream on your body..

[@valeriedebolt559]

I have read that the process of making xolair involves Chinese guinea pig ovaries that's mammal I was considering xolair for my chronic hives but now I don't know how can it treat a mammal food allergy if it has mammal in it??

[@kiranrasul7963]

And still have it.

[@kiranrasul5515]

I am healthy. But my son needs help. I’ve had it for years and no one knows how to treat me.

[@brittanycrabtree8967]

I cant have ice cream as well.

[@brittanycrabtree8967]

I'll do the survey

[@kiranrasul5515]

All natural organic resources.

[@kiranrasul7963]

My son Carson James. Has Alpha-Gal.

[@kiranrasul7963]

4 hours or so.

[@ADDMEONPSN]

Im in virginia and got bitten by a male lone star it gave me Alpha gal & STARI smh