Random Things I've Learned Since Contracting Alph-Gal Syndrome

 The first thing I've learned that I think is really the most important is that calling AGS a "red meat allergy" is almost a misnomer; it barely touches the tip of the ice berg.  

It's actually an allergy to the carbohydrate "galactose-alpha-1,3-galactose" found in the cells tissues and fluids of non-primate mammals..even cats and dogs.  However upon researching it, I have found that I am probably already conditioned to be used to the alpha-gal present in my cats/dogs, so they do not cause an allergic reaction when I am around them.  This doesn't make sense to me, but I have read online that some people DO become allergic to their pets.  I guess it depends on the severity of a person's sensitivity.  I supposedly have a moderate sensitivity.

This alpha-gal carb is also present in pretty much every mammal byproduct and also in all dairy products.

I have to scan labels for the following ingredients; gelatin, glycerin, lactose, casein, whey, stearic acid, lanolin, carrageenan...just to start with. 

Carrageenan is an algae that for some bizarre reason also contains the alpha-gal carbohydrate.  It can be found as an additive in seemingly a bajillion different products from foods to beauty products.  And it goes by any number of names; Irish moss, carrageenan gum, processed Eucheuma seaweed (PES), carrageenin, chondrus, Irish moss extract. It can also be listed as red seaweed extract, see moss, or vegetable gelatin. So when I go looking on labels and think a product is safe because it's listed as vegan, whether to eat or put on my skin, that is not often the case.  I either have to contact the company that manufactures it and ask, or I just avoid it altogether.  

Even after checking the label of my gummy vitamins and not seeing anything about gels or gelatin as an ingredient, I still get a reaction from them.  So in researching I have learned that vitamin D3 is sourced from lanolin.  Sheep.  Since I quit taking my vitamins, I have quit having big daily reactions.  Now to look for vegan vitamins that don't contain carrageenan.  

 You do not generally get an immediate reaction to exposure to alpha-gal.  Sometimes it's hours later.  This is why it took so long for the medical experts to even identify the syndrome.  

Everyone reacts differently to it.  I mean if there are a thousand different sufferers, there are a thousand different ways they react.   

 I seem to develop tachycardia (fast heart beat) as my reaction to alpha-gal exposure.  That is caused by a big histamine dump into my bloodstream apparently.  

I have not eaten any pork or beef or venison or any other mammal meat since my first tachycardia session when I was cooking bacon in the oven.  I think my reaction was to the bacon fumes, not due to the meatloaf sammy I'd had for lunch.   

 My system's reaction is the tachycardia; the fast heart rate.  Tachycardia is a heart rate of over 100 beats per minute.  

So far, I have yet to have anything other than a tachycardia reaction to consuming forbidden food.  I am sure that gummy vitamins and gummy candies give me a tachycardia reaction an hour or so after consumption.  But I've never had hives, swelling, acid reflux, stomach cramps, full blown diarrhea, or any other rashes.  I got chapped lips from the lip balm that had lanolin, and Ranch dressing burned my lips once.  But that is all. Well, at one point during the few days before and after that first tachy episode and I had completely eliminated the mammal meat from my system, I did have serious indigestion. 

Last night...well, at about  2:30 AM this morning I had a tachycardia reaction episode that woke me up.  It subsided in about 20-30 minutes, but these reactions always leave me jittery and nervous.  I laid there thinking what I could possibly have eaten to bring on an episode.  Further research later this morning taught me that often your body does a histamine dump in the middle of the night, for whatever reason.  So if you have seasonal allergy problems to begin with and then you add AGS to it, your body does some weird things.  I hadn't taken my 24 hours children's allergy meds yesterday.  I took some this morning so hopefully that will stop that from happening tonight; at least maybe not as badly. 

There are many foods that are high in histamines that I need to begin avoiding.  So at this point I am going to go on a low histamine diet to help my body throw off the extra histamines naturally.  Vitamin C is a natural substance that helps throw off the histamines from the body.  I am going to do more research as to what other foods are low histamine, or that help eliminate histamines from your body.

 

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