Adjusting eating habits to live better with HAE, other diagnoses

Confession time: I love food, especially sweets! They’re not good for me, though, or probably most people. Living with hereditary angioedema (HAE), as I do, is difficult, and having to watch what I eat is an added challenge.

The 1970s was the boom era for convenience, and I was a typical kid who ate junk food. I rarely drank water; my go-to drink was Kool-Aid. My favorite snack was cereal, the commercial variety sold during Saturday morning cartoons, all artificial colors, preservatives, and sugar. I was chronically ill as a child and believe my eating habits greatly contributed to that. My HAE and Ehlers-Danlos syndrome weren’t diagnosed until late adulthood.

We know today how bad excess sugar can be for everyone. I confess that I feel the negative effects every time I consume sweets, yet I love them so much. I also try to refrain from alcohol, since it can affect the body’s blood sugar levels. Getting a sugar high is a real thing. It’s no wonder, considering it offers a dopamine boost.

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The journey to healthier eating

Around 2000, our family’s pediatrician suggested a gluten-free and dairy-free diet might help one of our children who was struggling with severe brain fog. That was a huge challenge at the time because many such products weren’t readily available in mainstream stores. As I started shopping at health food stores, I became more aware of the issues with additives and preservatives, too.

Since I was having to learn to make new recipes without gluten and dairy, we began to pursue a healthier lifestyle.

This practice dovetailed wonderfully when we adopted our daughter Leah, who has celiac disease and many other health issues, as well as HAE type 2. We tried hard to go completely gluten-free and dairy-free after that. In doing so, I noticed a significant change in the way I felt as well. Eating healthier had positive effects.

Eventually, I was diagnosed with mast cell activation syndrome (MCAS), which explained why so many foods had triggered me. Because of it, I must now refrain from foods considered nightshades; potatoes, tomatoes, peppers, and eggplant are the main culprits. These are hard for me to avoid, but I notice a definite difference if I consume them.

Since my HAE diagnosis in 2023, I’ve discovered that stress is my biggest trigger, be it physical, mental, or emotional. And avoiding sugar, gluten, dairy, and nightshades can add stress, because sometimes I can’t find anything to eat that pleases my palate without causing a problem.

I have good days and bad days battling with myself over food. I try to hold dessert and treats to only once per week. I try to maintain healthy daily eating habits, consuming raw fruits and vegetables, drinking lots of water, and working hard to support my body so I don’t cause an MCAS flare or HAE swelling.

Maintaining our health, especially with rare disease, can be an uphill battle. If you too are struggling with food or anything else that affects your health and well-being, know that you’re not alone.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.