This was the strategy the celiac doc laid out at our first visit: first, check to make sure my celiac is well-controlled. If it’s not, that could be the cause of my problems. Once she could make a determination about the celiac, only then would we move onto other potential causes. At the EGD/colonoscopy last week, she visually confirmed that my celiac is OK (still waiting on biopsy results). From there, she decided the next step would be for me to have a full abdominal ultrasound and to see a food allergy specialist, both of which I was able to do on Thursday and Friday.
The food allergy specialist spent about 2 1/2 hours with us. She took me seriously (yay!) and had some good information. Here’s a summary of the visit:
- My reactions to foods are not true allergies. In other words, it doesn’t sound (to her) like the food responses I’m having are engaging my immune system. She thinks there’s another system at work, and suggested I may be missing something – such as some kind of mediator that regulates stress pathways.
- Skin tests for food allergies are super unreliable and should be ignored.
- I *am* “allergic” to sulfites. It’s not possible to be allergic to sulfites themselves, since they have no protein, but sulfites can bond with a protein in my body, which my immune system then reacts to.
- I have asthma! And it is incompletely treated! So she asked me to stop my daily topical steroid inhaler (1 puff 2x/day) and switch to a long-acting albuterol inhaler (2 puffs 2x/day).
- I don’t need to take Fexofenadine regularly – only as needed. I can try a nasal spray daily (2 puffs 1x/day). She wrote me a prescription for a nasal spray that’s more gentle than Flonase (I haven’t picked it up, yet).
- According to the skin test, I’m allergic to cats, dust mites, and cockroaches. The cockroach serum was for both American and German cockroaches. The cockroach allergy is mild, the cat allergy is semi-moderate, and the dust mite allergy is extreme.
- There’s a condition called “Vocal Cord Dysfunction” that can mimic asthma. To be sure she’s treating the asthma correctly, she wants to rule VCD out.
After the allergist appointment, we checked in at our hotel. The allergist sees patients in Merrillville on Thursdays; they’d scheduled my appointment there before the celiac doc was able to squeeze me in for an ultrasound on Friday. Tom picked out our hotel this time and I think I’m going to put him in charge of hotel selections now on. It wasn’t too much more expensive than last week’s casino but was much, much nicer. Our room had a fridge, microwave, and sofa, and the pool was just down the hall.
We ended up eating a late lunch in our hotel room, swimming in the pool, and then going to the Merrillville mall. It was empty and under-whelming. My brain was still buzzing with the information from the allergist. I decided to exhaust all the options at the U of Chicago before I travel to Kansas City to see the functional medicine specialist she recommended (who doesn’t accept insurance, so in addition to a 7.5-hour drive one way, I’d have to pay him $600 up front). I also decided to let the celiac doctor make decisions about my appointments and treatment, since she was my first point of contact at UC and knows the most about my medical history (see chart above).
After the mall, we also went to Toys’R’Us to look for a game and discovered that Toys’R’Us was far more magical when we were kids. Although the Lego displays sucked both of us in – some things never change. I picked out a game called Iota that turned out to be a LOT of fun. Usually I beat Tom in word games and he beats me in strategy games, but with this one we seem to be evenly matched. I took my first dose of the long-acting albuterol in the evening while we were playing our second game.
The ultrasound was scheduled for 10 a.m. Friday morning. Since the celiac doc didn’t see anything wrong with my intestines from the inside, she wanted to get pictures of my abdomen from the outside. That morning I took my second dose of the albuterol and my iron pills, but no food. “How long have you had the pain?” the tech asked. “Ten years,” I replied, which threw her off a little. I’d had an ultrasound to screen for gallstones in 2006, before I was diagnosed with celiac disease (they didn’t find any). We got there early and were out by 10:05. The results are in the system, but the celiac doc has to review them before they’ll be released to me; she’s only in clinic Tuesday-Thursday. I’m trying to wait patiently!
The allergist had been able to squeeze us in with the Vocal Cord Dysfunction specialist at 12:30, but since we were early, we wandered back to the DCAM building and let them know we were free. He was able to see us right away. I did not like him one bit. He was an old white man who just wanted to talk about himself. He stuck a video camera down my throat, which made me gag, and recorded my voice; everything was normal. To summarize the visit, I may or may not have vocal cord dysfunction (which we knew before we saw him) and should try specific breathing exercises he gave me when my throat feels like it’s closing. If the exercises help, I have VCD and should schedule voice therapy appointments at IU. Also, if I experience strider (wheezing on inhalation) during these attacks, I have VCD. Generally, he said, it would good if I could relax more. Harrumph.
After that we headed back toward Bloomington. I’d been trembly since I took the albuterol Thursday night, and it was increasing as the day progressed. Lunch didn’t help. I tried to sleep but couldn’t relax my muscles. Also I was having trouble breathing. Tom pulled off at a gas station at Fair Oaks and then everything fell apart. I started trembling/shaking violently, which made me frightened, so I started crying, which made me tremble more. I took my rescue inhaler, which opened up my airways (yay!) but I couldn’t stop trembling. It felt like hypothermia. My teeth chattered and my whole body shook. Tom called the allergist’s nurse line and left voicemail; then he decided to take me to a hospital. The closest was in Rensselaer, about 10 miles away. I tried hard to convince him I was OK (“Look! No more trembling!”) but he was not swayed.
The ER doc agreed that I was having an adverse reaction to the albuterol and prescribed Benadryl. Except, like in Chicago, these nurses weren’t able to get an IV in (“Such tiny veins!”). After three painful attempts, I asked if I could take Benadryl orally. The doc said OK, but the hospital pharmacy couldn’t guarantee that theirs was GF, so Tom got my stash from the car. Altogether it was a little silly – the hospital is going to bill my insurance even though *they* didn’t actually administer any treatment – but given the scariness of my symptoms it was a smart decision to get checked out. After about 2.5 hours’ rest in the ER my BP returned to normal (my HR was never elevated) and they let me go.
As we left the hospital I left another voicemail on the allergist’s nurse line. The allergist called back soon after and agreed that I should discontinue the albuterol. Instead, she asked me to take the topical steroid 2 puffs 2x/day. I was happy she called back. I slept the rest of the way home, and then dozed today until about 4 p.m. I’m feeling much better today, although I’m more tired than normal – probably from a combination of yesterday’s “excitement” plus the Benadryl. No more trembling, though, and I’m breathing fine. Trying now to stay occupied until Tuesday, when I can talk to the celiac doc and let her choose a next step. I think a lot of the next step will depend on the results of the ultrasound.