Shopping for an Allergist

This past weekend I had another severe allergic reaction -- the second in three weeks.

I had rubbed the corner of my left eye -- it was a little itchy -- and that turned out to be a huge mistake. I can only assume there was something on my hand because my eyelid swelled, and although I thoroughly cleaned the irritated area, it stayed swollen. Soon after, I became congested and started having difficulty breathing. Long story short, I was on Benadryl for two days. To make matters worse, the next morning, I woke up aching all over -- lymph nodes were swollen all over my body, some of which still haven't quite gone down.

A few weeks ago, I had a similar experience. I touched something in my basement, I'm not sure exactly what, and within 15 minutes, my hand was inflamed -- swollen, itchy, red and hot. I became congested, started getting a funny headache, and my lips, tongue and eyelids started to swell. I immediately took a Benadryl, and it was another couple days before I was functioning normally.

I guess it's time to find an allergist and get an EpiPen. I'm not enthused about having to carry one, but it beats the alternative. I already carry Benadryl wherever I go, and on a scary practical level, at some point in the future, Benadryl may not work, and then I'd really be in a world of hurt.

I'm even less enthused about having to see an allergist. Let's just say that I haven't had positive experiences in the past.

A few years ago, I got tired of getting sick from something I ate, and not knowing what it was, so I made an appointment with the new allergist at a clinic I've used most of my life. I hoped to identify any other problematic foods and confirm what the elimination diet had shown.

He just conducted a RAST test, checking my blood sample for antibodies. On my second appointment, he informed me that he didn't think I had food allergies, nor celiac disease. He offered to have me make another appointment during which I could sit in his office for eight hours wherein I would be fed potential allergens and he could document my response(s). Uh, yah, I'll just pass on that. I didn't need him to validate me; I already know very well what happens when I consume certain foods, thank you very much. Migraine, rash, congestion, projectile vomiting, difficulty breathing, diarrhea, swollen lips and tongue, I certainly didn't need to go through any of that to prove anything to him. Moreover, my celiac disease diagnosis was confirmed by biopsy, conducted by a seasoned gastroenterologist, not someone fresh out of residency, like him. Besides, there is a strong family occurrence of celiac disease -- my mom, brother, cousin and possibly other family members all have it, and as much as I wish it were otherwise, I have it, too.

I think what I resented most of all was how he treated me, essentially as if I were a hypochondriac seeking a certain diagnosis, primarily attention. I really felt like saying to him, "Do you really think I want to have this disease and other problems with food?" I wish I had. It's pretty demoralizing not to be believed. I went through that for years: Always tired or having headaches, I nevertheless seemed fine on paper; supposedly, there was nothing really wrong with me, so I was perceived as a hypochondriac.

Perhaps needless to say, I never went back. That was strike two for me with regard to allergists. I had done the whole allergy-testing bit when I was little -- needle-testing on the back and under the skin on my forearms, which determined I was strongly allergic to ragweed, as well as cats, dust and feathers. To help control my asthma, I did the subsequent two years of allergy shots, which did nothing but make my environmental allergies worse. A year of taking a teaspoon of honey my mom hid in my food, as well as many years of competitive swimming, did far more for managing my asthma than those weekly shots did.

Suffice it to say, I have a reason not to trust allergists, but I'm willing to concede that perhaps I haven't dealt with good ones, or at least those who can think beyond the bounds of antibody-testing. Today I am more optimistic that I can find someone who will be able to help me, and it helps that I'm more informed now.

About a year and a half ago, I had an allergic reaction similar to the one a few weeks ago. Then, I had touched the carpet in a local bookstore, balancing myself while trying to get a journal from a recessed bottom shelf. The same thing happened: Within a short time, I had a swollen, red, itchy hand; swollen lips; difficulty breathing. It scared me, particularly as I was preparing for a trip overseas, and I had no idea what actually had caused the reaction. It was at this point that I started carrying Benadryl with me at all times.

Looking for some peace of mind before my trip, I did some research online and made some interesting discoveries. I found that RAST testing doesn't always work, that not all allergies are IgE-caused, and that those with autoimmune disorders, like celiac disease, have a likelihood of developing T-cell allergies. In short, what a relief it was to find that there was an explanation for what I was experiencing!

All of this goes to say, you need to be your own advocate. You live in your skin, no one else does, so if you believe something is wrong, but are told there is nothing wrong with you, do your research and persist until you get the help you need. Doctors are not gods; they aren't always right.

I believe I've found an allergist with whom I'd like to make an appointment. He's also an immunologist, so I'm hoping he'll have experience dealing with someone like me. It's more than a little frustrating, not to mention scary, to have a reaction and not know the cause. I just hope he can help.

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If you think you may have a problem with allergies or intolerance, here are a few links you might find helpful.

The Food Allergy & Anaphylaxis Network
www.foodallergy.org

Asthma and Allergy Foundation of America
www.aafa.org

American Academy of Allergy, Asthma & Immunology
www.aaaai.org