When you have an autoimmune disease, special diets are going to be a topic that comes up over and over again. People with autoimmune diseases often have special dietary needs and limitations.

With my disease (pemphigus), certain dietary restrictions have been recommended to prevent pain/irritation and further flaring of oral ulcer symptoms. However, there is no known dietary trigger for the initial onset of pemphigus, and there’s no specific diet that can treat and/or cure pemphigus.

If you’re just getting started and looking for information, the IPPF (International Pemphigus and Pemphigoid Foundation) has a great nutrition page.

My diet has been a process of trial and error. I change things up and adapt depending on how badly my symptoms are flaring. I actually followed a pemphigus-friendly diet long before my diagnosis. My mouth just couldn’t tolerate anything beyond gentle food.

Even when my symptoms aren’t flaring, my mouth still hurts. A good day just means I have fewer and less angry ulcers. But, my mouth has not been free of ulcers, sores, and erosions for almost two years now. It’s life altering and disruptive and impacts me physically and socially. I’ve had to decline lots of invitations to events and pass on dinners out with friends. I can’t grab a quick lunch when I’m working on campus anymore. I have to think about everything I put into my mouth.

For me, the most challenging foods are spicy, tangy, dry, sticky, chewy, crunchy, and rough. So many foods fall under this umbrella. It’s depressing and dauting sometimes, because I so love to cook and eat! I do fine with coffee and tea. Mint is not really an issue. I can eat cooked tomatoes in moderation. A lot of people with pemphigus can’t.

Food for a Flare

The photo grid below is fairly representative of my peak-symptom pemphigus eating. I showed a couple smoothies before they were processed down, so you can get the idea of what went into the mix!

Food for flares is always smooth and bland. It’s not fun. You get to the point that you feel like you’re eating baby food. Sometimes even the bland and smooth food hurts to eat.

When my symptoms have been at their worst, there have been stretches of time I wasn’t able to eat anything that required chewing.

During those times, my diet was limited to blended soups, smoothies, and soft-cooked pasta and pureed vegetables. I try to focus on whole foods that have lots of vitamins, minerals, and calories. Instead of milk, I used heavy cream. I use lots of butter and avocados. I put extra melted cheese on dishes. Undesired weight loss is common for people with pemphigus.

I also pack tons of vegetables and fruits into my smoothies. I try to limit added sugar and eat adequate protein. I’m always focused on nourishing myself with healthy food, even though it’s incredibly challenging.

Food for Less Painful Times

During less painful times, I can usually chew and swallow with only minor discomfort, as long as I take small bites and go slowly. I still try to avoid tougher cuts of meat. For example, I eat more chicken thighs than chicken breasts. I eat a lot of shellfish because it’s so tender and juicy. I steam vegetables longer and I bake a lot of my fruit. Watermelon and cucumbers seem to be well tolerated. When my symptoms are better, I prefer to eat chunkier soups than I do during a flare.

Someday…

I am hoping when I get to remission, I can eat more freely – maybe even like I used to before pemphigus.

I miss eating raw berries and tart clementines. I miss big crunchy salads with vinegary dressing and olives on top! I dream of salt and vinegar almonds or biting into a crusty piece of French bread. Don’t even get me started on tacos! There are so many things I miss! It would be a miracle to be able to eat them again.