Carrageenan Allergy 3 Years Later

Think you’re possibly allergic to carrageenan? You are not alone! It’s been around 3.5 years since my carrageenan allergy diagnosis and since that initial post is still getting a ton of questions from readers I thought it was time for a little update. I’ve done a few other blog posts on carrageenan in makeup and carrageenan in skin care since that’s also a big concern. This is a tricky food allergy to get under control but it is possible! I’m sharing my experience to hopefully help others live under less stress from it.

And for the important disclaimer, please do not take my carrageenan allergy experience as medical advice. Please visit a doctor or allergist for professional care.

Have you had an allergic reactions to carrageenan since?

Now that I know what food I’m allergic to, my allergic reactions to carrageenan are few and far between. I’ve had a couple surprise severe reactions while I’ve been traveling. I had one allergic episode in Taipei when I ate a red bean soup dessert included with a prix fixe meal. Given the language barrier, this was unavoidable. Also when I was in New Zealand, I learned that some countries use abbreviations for preservatives, emulsifiers, and thickeners on nutritional fact labelling. Carrageenan is listed as E407 in ingredient lists. This labeling convention is also potentially used in Australia, the European Union, and other countries.

In restaurants, this rare food allergy is not always so easy to communicate. I’m considering making a wallet size food allergy card, and translating it in a few commonly spoken languages. That way staff can take it to the kitchen to cross check with the chefs and ingredient lists.

What are your allergic reactions to carrageenan like?

While my allergic reactions to carrageenan are less frequent, they are still terrifying because they arise in varying intensities of anaphylaxis. Symptoms start with my eyes itching, and because I’m a contact lens wearer this is sometimes hard to distinguish from normal irritation. It feels just like irritation from airborne allergens like dust getting in your eye. Once I know it’s not contact lens or dust irritation, I will immediately take Benadryl (diphenhydramine) to help cease the reaction.

If the reaction escalates I’ll quickly get sweaty palms and then an itchy throat. Immediately after that my eyelids will start to swell, and sometimes my lips too. Interestingly my eyes will swell at different rates, with my left eye first most of the time. The swelling could potentially close off my vision and airways in a matter of minutes. This is when I enter the anaphylaxis danger zone. At this point I will administer my Epi Pen. I carry two Epi Pens with me at all times in case one is not enough to halt the reaction.

It’s very scary and very real! Thankfully I’ve only had to use an Epi Pen on myself once. I was in NYC on a work trip so I rushed back to my hotel where I could rest safely. I had a family member on FaceTime so they could help me count for a few seconds while I administered the Epi Pen.

Have your eating habits changed much?

At home, no. My grocery shopping hasn’t changed much. Mainly I buy less ice cream now. I also buy less meat products now, like Trader Joe’s deli turkey and Costco rotisserie chicken. Those are both surprisingly pumped with carrageenan! And I no longer buy the protein bars that helped me uncover my allergy diagnosis. Unrelated to the allergy, I intermittent fast and eat mostly low carb now for weight management reasons. Starting with whole food ingredients and cooking from scratch has helped tremendously. That’s the only way I can really guarantee my meals are carrageenan free.

When I go over to family and friends houses for dinner. My family now knows to avoid carrageenan in dishes when making some of our favorite recipes. But if I was at a potluck, I generally know which dishes to avoid. I avoid desserts, creamy dips or dressings, and deli meats. Sometimes I just eat before I go to events or bring a snack in my bag in case there isn’t much I can safely eat.

At restaurants, my eating habits have definitely changed. I no longer order whatever I want. I have to think through what might sneakily contain carrageenan. Since I cook at lot more now, this is easier to reverse engineer in my brain. If I go to fast food restaurant like McDonalds, Taco Bell, Chick Fil-A, Culver’s, and others, I will always look at the ingredient information on their website before ordering. Also letting your server know about your allergy or just making a note with your reservation also helps.

That’s what has changed with my eating habits over the last few years since my diagnosis. I no longer eat in fear, but I’m always cautious and prepared. To see more of what I’m eating and cooking on a daily basis, be sure to follow my food Instagram account @omgfeedmethis. If you have any other questions about living with a carrageenan allergy let me know!