Alpha-gal: It all started when…

Taco night.

The kids loved taco night. Heck, the adults loved taco night. One night a week, usually Tuesday or Thursday, simply because ‘Taco-Tuesday’ and ‘Taco-Thursday’ are just that much more fun to declare to gleeful children, I made tacos. Ground beef with that taco seasoning you can get in the giant container at the big box stores, store-bought boxes of shells, cut up veggie toppings, sour cream, jar of salsa. They were always the same. Same brands, same prep method, same everything. We would all gorge ourselves on too many tacos, plus a bit of taco salad over tortilla chips for dessert. I’d get the little ones ready for bed, and then we’d collapse on the couch for some TV and digesting before we headed up ourselves. No deviation. Until one night in September 2012.

We ate tacos around 5 in the evening. By 8pm, the kids were just tucked in and I went downstairs to park myself on the couch, and I noticed my scalp was really itchy. I just assumed my hair need washing, so I went up and took a shower. By the time I came back down, it was a little better, but still pretty itchy so I took some Benadryl and went on to TV watching. Around 9pm, I tried to take a drink of water from a cup and the cup felt weird on my mouth. I went to look in the mirror, and my upper lip had started to swell.

Prior to this point in my life, I had never had an allergic reaction to anything. (Well, apparently I broke out in hives when I was given Septra as a newborn, but I don’t remember that.) I had never had hives, or swollen lips or tongue, or any other major allergic reaction. So I didn’t immediately recognize what was going on, nor did I put the itchiness and the swelling together as signs of something bigger. So I went to bed that night (the Benadryl was kicking in pretty good by then) and didn’t really worry.

This is what my next week and a half looked like*:

Sep 23:

• woke up and itch had lessened, but spread to my entire body
• by 1pm, my lower lip had swollen up, just on the right side. I actually felt this happening. I was at a local farm picking up my CSA for the week and chatting with the owner when I actually felt my lip swelling. I went home and took more Benadryl and was pretty much useless the rest of the day.

Sep 24:

• my lips were still slightly swollen in the morning and I was still a little itchy
• I got an appointment with my allergist at 3pm that day. I have a note that says “blood tests neg,” but I don’t exactly remember what he was testing for…possibly an immunoglobulin (Ig) reaction?

Sep 25:

• Woke up back to normal! Hooray! …but wait…
• Ate a bagel and had coffee from a popular chain donut shop
• I was in class that week and went to a popular chain coffee shop nearby for lunch and had a tomato-basil-mozzarella sandwich and a peppermint mocha
• By 1:30pm I was having hot and cold flashes and was nauseous, but was able to finish class
• I managed to eat a bit of canned chicken noodle soup for dinner around 5pm, thinking that might calm my stomach a bit. It didn’t.
• From 7pm until about 8:30pm, I threw up. And it was mostly my tomato-basil-mozzarella sandwich from lunch.

Sep 26:

• Woke up still nauseous, but managed half a piece of buttered toast for breakfast
• I picked up a Gatorade on the way to class at 7am
• By 9am, the left side of my bottom lip swelled up. I called my allergist and he prescribed a H2 blocker, cimetidine (a prescription strength dose of Tagamet)
• For lunch, I ate a pb&j and some pretzels
• For dinner, I ate fried chicken and mashed potatoes from a chain chicken place that’s not from Kentucky and took the prescription

Sep 27:

• I woke up miserable. I had severe stomach pain, nausea, sinus pain, dizziness, and a massive headache. I vividly remember crawling from the bathroom to the top of the stairs to yell for my husband (ex).
• He drove me to the ER where they did blood and urine tests and gave me an IV bag (for dehydration), Pepcid, anti-nausea medication, and Vicodin. The ER doc’s expert opinion is I was being dramatic and was probably hungover or in a withdrawal from some illicit substance. So I was released and sent home with 4 more Vicodin.
• I took one Vicodin at 11am, one at 4pm, and one at 8pm, sleeping the whole time in between (I’m not sure where the “high” is supposed to come in…it just makes me sleep)

Sep 28:

• I woke up at 6am, and took another Vicodin…back to bed!
• I got up around noon and ate a bit more chicken noodle soup….and then went back to sleep
• By 6pm, I was feeling a bit better

Sep 29:

• I was feeling much better that morning, but was constipated
• 6am, I had scrambled eggs, toast, and fried baloney
• 2pm, I ate chicken mac and cheese from a  restaurant chain
• 4pm, I had a mango smoothie, homemade from frozen mangos
• 9pm, I had a small plate of nachos from the leftover meat, cheese, and sour cream from taco night
• By 10:30pm, I had indigestion and my scalp was itchy again. I took Benadryl and went to bed.

Sep 30:

• I was still itchy when I woke up, still constipated, and feeling a little run down.
• I had very little appetite all day

Oct 1:

• I had no appetite all day
• I felt run down and queasy
• I was congested
• I don’t have notes on what I ate that day, probably just snacked on whatever considering how I was feeling, but by 4:30pm, my back, arms, and scalp were all itchy
• 8:30pm, I took Benadryl and went to bed.

* I took notes during this time to possibly help identify the culprit. After this episode, I was able to share my notes with my allergist to help with my diagnosis. I continue this today, taking notes about the most benign things whenever something I don’t understand is going on with my body. It has greatly helped me identify patterns and be able to make predictions on how I will react to something. I am also able to more clearly communicate what has been going on with me if I do feel the need to see a doctor without having to have a perfect memory.

Finally, after that miserable week+, I got in to see the allergist again. We went over my log above, and he did another blood test which came back positive this time. The whole appointment is kind of a blur. I was still feeling like absolute crap, and going through this thing I didn’t understand. I didn’t ask all the questions I should have. I kind of just listened and nodded and once again took the expert opinion as absolute.

I had something called Alpha-gal disease. I had adult onset food allergies. And I was allergic to sulfites.