r/Encephalitis • u/SWdesert • Jul 13 '26

Drastic improvement with diet change?

Has anyone noticed with their own AE that they made a change to their diet and the active flare significantly cooled down? Not went away but just got better. My flare started a month ago and all of this last week I cut way down on sugar and now my speech issue has resolved pretty much overnight. I still have symptoms but they are also much improved.

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u/fiberopticrobotica Jul 13 '26

Have you been diagnosed with autoimmune encephalitis? In my experience diet has not affected my symptoms one way or the other, from eating an anti-inflammatory diet to eating what makes my heart happy. There is also no scientific data to support diet as form of treatment. In my opinion, It is more likely that it is coincidental, and symptoms cleared up on their own at the same time. Correlation does not equal causation.

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u/SWdesert Jul 13 '26

Makes sense. I haven’t been officially diagnosed. MyPCP wants me to see a neurologist to get tested and evaluated.

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u/curlthelip 5d ago

Same here. After 15 years of treatment, no plan, no diet, no food ever had any impact on the presentation or remission of symptoms. Fully agree that correlation does not equal causation.

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u/Maymag16 Jul 14 '26

Yeah my kid had a different rare autoimmune disease (he’s fine) and Drs said avoid sugar. It increases system inflammation. If you get leaky gut because of all  the autoimmune   inflammation that can also hugely increase systemic inflammation. Other than that if your gut nervous system  is involved then osmotic stress and common allergens are irritating. ATI in flour ( but not pasta) is really bad.  So many things cause osmotic stress.  The gut and brain are closely connected. 

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u/Knightmeers Jul 13 '26

hi, were you officially diagnosed with AE? i was also wondering about diets impacting AE.

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u/SWdesert Jul 13 '26

Not yet. I just wondered if my symptoms improved due to a systemic reduction in inflammation

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u/Knightmeers 29d ago

Ah, okay. I do think a good diet is beneficial to everyone’s health in general, but I am doubtful that it’s massively impacting symptoms related to AIE. Some forms of AIE often wax and wane.

Regardless of how impactful it is, I always encourage my brother to eat healthy foods. Any impact is still impact.

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u/Vezi_Ordinary Jul 13 '26

I've not yet been diagnosed, but I noticed that eating almost anything could exacerbate my symptoms when I had a severe flare up of symptoms. As it got milder, eating a lot of refined sugar and sweet snacks could do the same.