What happened when I did an elimination diet for interstitial cystitis?
A lot, it turns out.
It’s been five or six weeks since I started this elimination diet, and it’s been tough. Despite everything I did, the bladder pain didn’t go away. In fact, I’ve had about five or so bladder pain-free days in 2020 so far. And when you’re eating a diet of cruciferous vegetables, nettle tea, and some beans for six weeks straight, it can be, well — depressing, quite frankly.
Nevertheless, I persisted.
And I’m glad I did. Not because my pain is resolved, it’s far from it. But because I now know the next step in my healing journey.
In the first two weeks, I spent a lot of time trying to work out which low- to medium- histamine-containing or liberating foods were still causing my symptoms. It’s near on impossible to do a histamine-free diet, so it’s more about staying with low-histamine foods. We’d kept in a few foods that I needed for their nutritional qualities, and I toyed with cutting those out here and there to try to get relief. Often, it would work for a day or two, and then the symptoms would return.
Over time, I noticed that while some of those remaining foods were bothering me to an extent, they weren’t the key culprits. Something else was going on. Most of the time, the only nights I would manage to sleep for more than five hours was because I was so exhausted, I would sleep through the pain of my bladder filling up and would manage to get six or seven hours. The problem was my sleep was disturbed by dreams about really needing to pee!
I started noticing that the pattern wasn’t so much me cutting out those foods, but that I was exhausted. My desperation would peak, and I’d cut out a food. I was so tired I’d manage to sleep a bit longer. The next day, I’d continue cutting out that food, but my sleepless nights would resume.
By the third week, we decided to introduce a number of antihistamine supplements, including rutin, quercetin, and nettle tea. Diamine oxidase is also an option; it’s the enzyme that breaks down histamines, but because I’m vegan I couldn’t take this supplement as it’s made from pig kidney. You can also add nutrients to help your body create diamine oxidase, but sadly some of the key nutrients needed are supplements that can aggravate interstitial cystitis so I had to skip those.
I found that the supplements began to reduce the overall levels of pain, but not entirely and not enough to bring me a full night’s rest – though my nights have been getting longer on average.
So the next question was what’s causing the pain to persist.
We know I’m sensitive to histamines and oxalates – my bladder is worse after I eat foods like chocolate, avocado, wine, and sauerkraut. My lab results also indicated I am sensitive, and since I’ve been avoiding these foods, my heart palpitations, tight chest, and chest pain have resolved, while the swelling around my eyes has reduced.
But it hasn’t been enough.
One possible explanation that’s never far from my mind is small intestinal bacterial overgrowth (SIBO). I haven’t had the finances to test for SIBO yet, but I’m presenting with 95 percent of the symptoms, and this elimination diet has really highlighted that.
There are three types of SIBO:
- Hydrogen sulfide
Hydrogen sulfide SIBO is harder to detect as there isn’t a direct test for it, but experts often identify it by looking at patterns in the test result in context with the symptoms. The symptoms include (but are not restricted to):
- Bloating, gas, diarrhea, and constipation
- Bladder pain, frequency, or urgency
- Histamine sensitivity
- Food intolerances
- Body pain
- Tingling or numbness in hands and feet due to B12 deficiency
- Sulfur-smelling gas (not very common)
- Brain fog
- Depression or anxiety
Hydrogen sulfide SIBO can often get worse when we eat sulfur-containing foods such as eggs, broccoli, and cauliflower. Though I eat cruciferous veggies every day, I eat them with a wide selection of other vegetables that support my gut health. But on this diet, I had to eat a lot more of them and even started adding an egg for protein. It was then that I started noticing worsening IBS symptoms, and began piecing together the puzzle.
So what’s the next step? Try to get tested or try treatment under supervision to see whether my symptoms improve.
I’m pleased to report that I can widen my diet in the meantime — just with a lot of antihistamine supplements to hand.
This column is based on my experience. If you are considering trying an elimination diet please consult a qualified nutritionist or doctor.
Note: Endometriosis 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 Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.