Food Allergies and Lupus: Angioedema that won't quit, and ways to improve your symptoms. (Think elimination diet!)
I think the universe was trying to tell me something. Let me set the stage:
Shortly after I was diagnosed with lupus (almost 20 years ago now!), I started to develop allergies to various foods and beverages. At the top of the list were fresh herbs - basil, parsley, cilantro, and arugula, just to name a few, along with spinach and wine - first, just red, then both red and white.
I was distraught. It was so challenging to eat out, primarily because of the herbs and the various foods cooked in wine. The allergic reaction I had when I ingested the above was so embarrassing. My tongue would get tingly, and then my lips would swell - like, to three times their normal size. If the swelling had been evenly distributed, maybe I could have pulled off a botox look. But no, the swelling was uneven and ghastly - like a third or a half of my lip would just be huge, while the rest was normal. Or just the middle would be swollen, distorting the area between my upper lip and my nose. The exact area of swelling could have been where contact had taken place, but some times, I wouldn't have ingested anything. The swelling would just happen spontaneously. On those days, I felt like the swelling was obscuring my entire face.
This type of reaction is officially called angioedema*, and my doctor and I tried all kinds of things to reduce its occurrence. We added various antihistamine medicines, and took other meds away. I changed my diet, of course, and every doctor I saw was willing to weigh in on what the cause might be.
I eventually swore off dairy, alcohol, and night shade veggies altogether (because I felt like those were contributing to the issue, too), and reduced my consumption of red meat, along with avoiding the foods I knew I was allergic to. It was a lot of change, but the swellings did subside, alongside my disease activity. It was clear they were linked.
Fast forward several years, after becoming healthy, stable and strong, and I slowly started adding foods back into my diet. First the dairy and small amounts of red meat. Then white wine and alcohol, in small amounts. (Red wine still caused a small reaction.) I introduced dried herbs, next, with complete success, and then started testing fresh herbs - like a little cilantro in salsa, or parsley flakes on my garlic bread. Again, success!
At the end of my elimination/reintroduction process, the only hold outs were basil, arugula, spinach, and red wine. Not too bad! After what I had avoided in the past, this was nothing.
But as years passed, and my lupus remained stable, I would try each of the hold out foods about once a year, and eventually, basil was the only one that continued to cause a reaction. Hallelujah! A girl can function without basil!
Which brings me to today, and the universe.
Over the past few weeks, our grocery delivery service substituted three items over the course of three deliveries. I found myself with tomato and basil crackers, tomato and basil spaghetti sauce, and tomato and basil chicken sausage.
Hmmm. That's a lot of basil.
But it had been at least two years since I had tested my reaction to basil. And I thought, "Well, here's my chance. At least I have the test subjects handy."
(Interestingly enough, when I successfully reintroduced spinach to my diet years ago, it was around the first of the year. Maybe I just like starting the New Year fresh and full of possibility!)
So I tried a cracker first. It had to be dried basil, right? So hopefully it would be the least potent.
And it worked. No reaction at all. One down, two to go.
A few days later, I tried a spoonful of the sauce. No problem again. Woohoo!
Finally, a couple of days later, I tried the sausage. Complete success!!
All three items were then incorporated into meals and ingested, without issue.
No reaction whatsoever. Yay!!!!
So I am officially food allergy free, and lupus can kiss my grits. I chalk up my success to my stable disease, and all the work I do to manage my illness and keep lupus activity at bay. I am especially proud of my patience and perseverance. I didn't give up, but I didn't rush it, either.
Lupus activity does change over time. The symptoms you have now may not be the ones you have long term. The question to ask yourself - are you doing everything you can to keep those symptoms quiet? My allergic reactions were obvious, and it was somewhat easy to pinpoint what I could do to reduce the lip swellings. But I think that fatigue, joint pain, joint swelling, rashes, and many others can also be pinpointed. For me, stress, overworking, under sleeping, and running my body into the ground most certainly contributed to my disease activity. Once I pinpointed those causes, making changes as I could, my disease started to react positively.
I hope the new year brings positive thinking and loads of possibilities for you, too!
*Angioedema can be triggered by an allergic reaction to: certain types of food – particularly nuts, shellfish, milk and eggs. some types of medicine – including some antibiotics, aspirin and non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen. insect bites and stings – particularly wasp and bee stings. www.nhs.uk
Cited: AngioedemaCauses - NHS