WW: Living with Food Allergies — Diagnosis

Try to put together the pieces is hard when you're not sure what goes with what.
Try to put together the pieces is hard when you’re not sure what goes with what.

How were your food allergies diagnosed?

Name Tag MKDenise and I have both posted our diagnosis stories in our blog bios. The medical tests recommended for each of us were different — her allergist recommended skin scratch tests, and my doctor had referred me to a naturopathic doctor because she couldn’t help, and my naturopath was the one who brought up food allergies. She recommended blood testing.

There is no standard testing protocol that everyone agrees on, it seems, but FARE identifies four paths of testing. After the medical tests, we both did elimination diets followed by food challenge testing. Our elimination diets varied in length — Denise’s lasted three months or so, mine was more than 6 months. The food challenges were … well, they were time-consuming and depressing, as most of the time, those foods identified as “potential” allergens made each of us sick. Yipee, real allergy identified. [sarcasm]

Treatment: Avoid trigger food. Forever. This diagnosis is secured, right?

(If you’re lucky enough not to know, a food challenge usually involves waiting until you feel well, and then eating several servings of a food that has been identified as likely to make you sick. And then wait three days, and record all symptoms. If you get really sick, never do that again. If you feel just kind of unwell, maybe try it again, or try different iterations of the food — eggs, egg whites, mayonnaise, for example — and see what happens. Depending on the severity of the expected reaction, you may need to do this under medical supervision. Please don’t read any of this as recommended medical procedure, though.)

This post on Gluten Dude really resonated with me, as I’m in a similar boat. I wasn’t tested for celiac until after I’d been told to cut gluten from my diet (it popped as an allergen on my blood test). So after cutting gluten (and a bunch of other things), I was told to go back on gluten and get the blood test, but it came back negative — did it come back negative because of the on and off, or because I don’t have celiac? The GI, years later, said he found no evidence — not really listening to the fact that I’d been gluten-free for a year and a half at that point. Genetic testing is complicated, as insurance won’t cover it for me easily because I “have no family history of celiac,” but I don’t have a full family medical history — I’m adopted. One of those catch-22 situations. 

My final decision is to never again eat gluten, as the last time I was accidentally exposed it knocked me down for two days. I’m okay with that decision, overall, as I’d rather be healthy than eat bread. But unlike “plain” food allergies, it would be nice to know if I have an autoimmune disease, instead of saying “severe intolerance to gluten with some of the hallmarks of celiac.”

I think that teasing out what you’re allergic or even sensitive to can be next to impossible, whether you’re talking about food allergies or environmental allergies. When do you eat just one food in a day? Or in a meal? Or when are you in a room with only one thing that you could be allergic to — dander, dust mites, pollen? How do you narrow it all down? How often do people even consider that allergies might be the cause of their health issues? My doctors didn’t for years.

See, I think diagnosis might be key in starting this journey, but it’s not the end of it. Knowing exactly why something makes you sick is sometimes helpful, but not as helpful as avoiding the food or trigger. The problem seems to be that the list of allergies can grow, change, expand, and so does the world. We can hope that medicine will catch up, too, but I’m not personally holding my breath.

What it seems to boil down to is using the tools your doctor or medical team can offer, and then doing a boatload (frankly, an ark-load) of research on your own. Read up. Use the magic of the internet. Get really good at trying to tease out the good sources from the questionable sources that may have some good information from the crackpot theories that somewhere in them have a product to sell to fix you. Ask lots of questions. Find other people online going through weird stuff and read what they’ve found out. Use the doctors again, if you can. And most of all, pay attention to yourself, and get to know what’s going on, both when you feel sick and when you feel well. It’s a lot of work, but generally no one else is going to do it for you.

Name Tag Denise

One of the things I find so aggravating about diagnosis is that my ball appears to keep moving. And that I had a lot of problems for a lot of years that maybe wouldn’t have been problems if my food allergies had been properly diagnosed. Mark Kate is correct in that I have had scratch testing, and you can read about it at the link above. But I’ve also have two allergies that I just had big enough reactions to the food that I don’t need to be tested, I know I’m allergic. And in the last two weeks, I just hit another food that might be a problem. I had a reaction, hives and facial swelling, which faded when I took Benedryl, and I had a milder reaction to another form of the food a week later when I ate it by accident because I wasn’t paying attention (again, I’m an idiot, don’t follow my example). I’d like to do another formal food challenge, but I need to be clear of things and get my body back to normal, before I’m willing to confirm that it’s food allergy #14. 

At this point, I find allergy testing technology to be so unreliable, that it’s hard to deal. In the last round of scratch testing, I tested positive for seven new allergies, I got a 2+ for lobster and 1+’s for wheat, corn, potato, chicken, celery and onion. For the 1+ results, the allergist said this result meant I had approximately at 25% chance of having a true allergy for these reactions. Only three of the positive results were confirmed by subsequent food challenges, although one of the ones I’m calling a pass at the moment might be iffy. (I noticed some minute things, but it’s lobster, and I could have been otherwise exposed the last time I challenged it, so I’m calling it a pass. It’s lobster.) Of the three that were challenge confirmed, corn, wheat, and chicken, all of which were a 1+’s, the corn is fourth for severity of reaction out of all 13-14 food allergies. Crab which is my worst reaction in severity, is a 2+. I can eat picked blue Atlantic crab with no apparent reaction, but if I eat soft shell crab my throat closes and I throw up. Sunflower is my second worst reaction. I’ve had no medical testing to verify it, but the reaction was so bad, I won’t do a food challenge to confirm it. I don’t want to have to use my epi pen. Dairy which is my third worst reaction in severity is a 3+. Does any of this make sense? Nope. 

At the beginning, diagnosis seems like a life line, because you have some hope that things will get better and you’ll feel better once you know what to avoid. But there are false positives, and there are false negatives, and to verify you have to do food challenges. And there are people out there who don’t test positive to the serums at the allergist’s office, but have a documented reaction to the actual food. But for me, as time has progressed, I’ve realized that I have to pay attention to what’s going on with my body and watch what I’m eating, because testing isn’t as reliable as my observations and my actual reactions. 

    1. I’m a little late here, but I had a similar experience. I tested negative for an allergy to beets. Raw beets make my mouth itch and my lips swell up but I can eat roasted or roasted then pickled just fine. The allergist decided it was on “oral allergy” and have me an epi-pen. The thing about allergies is that they are a reaction to proteins, and sometimes the allergy is so specific that denaturing the protein a little renders it non-reactive. I wonder how they make the serums they use to test for allergies – if they aren’t processed the same way as when you eat or touch them, a really sensitive person might not get the same result.

      Intolerances are often enzymatic – lacking the right enzyme to break down sugars. They’re just starting to identify enzymes – there’s a genetic test for P-450 now. That was developed largely because there is economic incentive to deliver the correct amount of painkillers. The economic inventive for food allergies/intolerances just isn’t there. Frustrating.

      1. I’ve tested positive once for walnuts and negative on another occasion. And I’m pretty sure they’re going on my main list after the reactions I was having last week. So yeah, very frustrating!

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