u/Brian_Lefevre_90013

9 years of inconsistent random symptoms besides 24/7 DR and terrible anxiety. 18 months ago started major triggers for both SIBO (small intestine bacteria overgrowth) and MCAS (mast cell activation syndrome): 2 bacterial infections, 2 rounds of antibiotics, 2 viral infections (one of which was COVID), a flu shot, and a vaccine meant to boost my immune system. (I am not anti vax, but people with mast cell disorders can have exaggerated reactions to vaccines.) MCAS is the reason why I'm so insanely sensitive to medication changes. I was getting side effects from manufacturer changes of generic medications (Wellbutrin and Effexor), and eventually just from bottle (batch) changes. I had been told over and over that my symptoms were psychosomatic and have tried a total of 30 different medications. Super fun side effects.

Two things that significantly reduced my anxiety and DR:

1. Stopped trying new medications and dose changes. My mast cells finally calmed down somewhat.

2. Started a very strict low Fodmap and low histamine diet. It sucks and is a major pain in the ass but my anxiety and DR flare-ups pretty much stopped. I still have DR but my anxiety is virtually gone after 18 months and there were times in the past that I had agoraphobia and selective mutism.

I have a long road ahead but at least I finally know the actual causes, and have a treatment plan: mast cell stabilizers, and antibiotics to kill the SIBO.

If you have chronic bloating (especially if your BMI is healthy or low), SIBO might be worth looking into. As for mast cell disorders... symptoms can vary significantly and it's really difficult to correctly diagnose. Also, SIBO and MCAS are fairly new diagnoses and many doctors think they are fad pseudo diseases.

It's tough because there are other causes of DP/DR besides a "Big T". Also, my causes explain why CBT didn't do much to help me and neither did EMDR. Both can be highly effective... but not if the cause of dpdr is physiological. I don't recommend that you try very extreme diets unless you read a lot about nutrition first. I had previously tried Whole30, keto, carnivore, plant-based, fasts, and just eating junk food. None of theses made me feel better because none of them are both low and FODMAP and low in histamine. There are tons of food restrictions to experiment with and honestly it can be a complete crap shoot.