Before my formal diagnosis of pemphigus, it felt like everyone was telling me that if I fixed my gut health with a special diet, all my symptoms would magically vanish. Countless people suggested I’d find my answer by turning to nature and food-as-medicine instead of ‘Big Pharma’.

And honestly, I was desperate, and willing to try anything to feel better. None of the medications I was taking were working. I’m also a big believer in the power of a nutritious, varied eating plan as beneficial to our overall health. I had been a careful and healthy eater throughout adulthood. What could it hurt to try a special diet for people with autoimmune issues?

It turns out that it’s not that simple.

When I started doing research and talking to people, the recommendations I heard most were the carnivore/paleo/keto, gluten/dairy free, autoimmune protocol, and vegan diets. I researched each of the diets and joined a number of online communities that followed the plans.

When my symptoms first started in spring of 2023, I ate gluten-free and dairy-free for several months. I had read numerous case studies about these foods being possible root causes of mouth ulcers. Unfortunately, these dietary changes had no positive impact on my symptoms. Also, things like milk, ice cream, and melted cheese were some of the only foods that didn’t hurt to eat. I had already been tested for celiac (multiple times over the years) and a whole range of other food sensitivities, but in the end, gluten and dairy just weren’t problematic for me.

Then, in early in 2024, I hit rock bottom. I despaired to be in so much pain. I decided to give the AIP (Autoimmune Protocol) diet a try. I followed this extremely challenging elimination diet plan strictly for almost four months. My symptoms only got worse while I was eating all this nutritious, clean, toxin-free, gut-health-improving food.

When I bemoaned my lack of results, the community suggested I give it more time or that maybe I was unknowingly cheating. Some people suggested that I needed to restrict the diet even more and only eat a small handful of ‘safe‘ foods. When you’re a person with painful mouth ulcers, sometimes you can’t even eat the limited safe foods, because they hurt too badly. I lost about twenty pounds (that I didn’t want to lose) before bottoming out around 125 pounds – I’m 5’9″. I felt worse than I ever have in my life.

Maybe AIP just wasn’t my answer, either.

Ultimately, it wasn’t the diet itself that made things worse – it was the lack of appropriate medication that caused me to continue to decline.

The valuable lesson I learned – special diets can be great, but they are not always the treatment you actually need. A healthy, nutrient-dense diet is always a good thing, but it might not fix you if you have a rare and weird disease! You might need drugs.

I am certain that AIP does help some people with some autoimmune conditions. Many people in the community say they felt better and had fewer autoimmune symptoms after going through AIP. It’s wonderful when people find healing and relief, so I will always cheer for people who find success with dietary interventions.

Most of the community had more common autoimmune conditions – Hashimoto’s thyroiditis, ulcerative colitis, Crohn’s, psoriasis, lupus and rheumatoid arthritis.

The whole time I was part of the community, I never met anyone with pemphigus. Though I was not diagnosed at the time, I was always on the lookout for people in the AIP community that were also suffering primarily from mouth sores/ulcers. They just weren’t there! Now that I’m diagnosed, that’s not a surprise. We pemphigus people are a rare breed!

And in the end, a special autoimmune diet just wasn’t my answer. I’ve learned to be ok with taking medication. For a time, it felt like a failing, but I’ve let that go and have found peace with my new treatment plan.

I’ll still keep eating healthy though!