28/09/2025
Have been reading some inspiring stories from other SPS warriors. I didn't know that diet may have an influence? Here is what ChatGPT had to say:
Quick summary of the evidence (key points)
There are no large randomized controlled trials showing any specific diet cures or consistently treats Stiff Person Syndrome (SPS). Most formal clinical trials for SPS are testing drugs or immune therapies, not diets.
ClinicalTrials
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The strongest diet-related evidence is case series / observational reports linking SPS (often anti-GAD antibody positive) with gluten sensitivity / celiac disease. Several reports and a 2021 review found a notable subset of SPS patients had serological or biopsy evidence of gluten sensitivity and many showed clinical improvement on a gluten-free diet (GFD). This is promising but not definitive for all patients.
MDPI
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Clinically, diet is viewed as supportive — it may reduce inflammation, remove triggers (e.g., gluten in sensitive people), and improve general health and muscle function — but it’s typically not a replacement for neurological or immunomodulatory treatments. Expert reviews highlight multi-modal management (meds, immunotherapy where appropriate, physical therapy, lifestyle).
pn.bmj.com
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Bottom-line recommendation
If you have positive tests for celiac disease or gluten sensitivity, a trial of a strict gluten-free diet (supervised by your clinician/dietitian) is reasonable — some SPS patients in case series improved substantially on GFD.
MDPI
Even without proven gluten sensitivity, adopting an anti-inflammatory, nutrient-dense diet (focus on whole foods, adequate protein, healthy fats, vegetables, and meeting micronutrient needs) is low-risk and may help symptoms, recovery, and overall well-being.
Work with your neurologist and a dietitian. Keep a symptom-and-food journal so you can spot patterns and make changes safely.
Practical 4-week nutrition plan (ready to use)
This plan assumes you’re open to trying a gluten-free approach if desired. It’s supportive, anti-inflammatory, and built to preserve muscle and nerve health. Not a medical prescription — check with your care team before making major changes.
Core principles
If testing shows gluten sensitivity/celiac → strict gluten-free (cross-contamination avoidance). If not, you can still try GFD for 8–12 weeks and track symptoms.
Emphasize anti-inflammatory foods: oily fish, colourful veg, nuts/seeds, legumes (if tolerated), olive oil, herbs/spices.
Ensure adequate protein (aim ~1.0–1.2 g/kg/day depending on activity and clinician advice).
Check and correct magnesium, vitamin D, B12, folate, and calcium if low (work with lab tests).
Stay hydrated; avoid excessive caffeine or alcohol if they trigger spasms.
Focus on regular small meals to stabilise blood sugar (hypoglycaemia can aggravate symptoms in some people).
Supplements to discuss with your clinician (not mandatory)
Vitamin D (if deficient), magnesium (if low or muscle cramping), B-complex if deficiency suspected.
Avoid taking high doses of anything without medical supervision.
1-page symptom & food journal template (daily)
Date | Time | Meals/snacks (include ingredients) | Meds taken | Pain/stiffness score (0–10) | Spasms (none/mild/moderate/severe) | Notes (stress, sleep, exercise, triggers)
Sample 1-day template (you can rotate)
Breakfast: Greek yogurt (or dairy-free alternative) with berries, chia seeds, and a handful of nuts.
Mid-morning snack: Apple + 2 tbsp almond butter.
Lunch: Large salad — mixed greens, grilled salmon, quinoa (or extra veg if GF required), avocado, olive oil + lemon.
Afternoon snack: Carrot sticks + hummus.
Dinner: Roast chicken thighs, steamed broccoli, sweet potato.
Evening: Chamomile tea (if helpful) — avoid heavy stimulants close to bedtime.
4-week plan structure (high level)
Weeks 1–2: Eliminate processed foods, reduce sugar and refined carbs, increase vegetables and protein. If trying GFD, remove all wheat/barley/rye and replace with certified gluten-free grains (rice, quinoa, certified oats). Track symptoms daily.
Weeks 3–4: Evaluate symptom trends. If improved, continue; if no change, discuss with clinician about continuing or reintroducing foods one at a time. Consider adding a targeted micronutrient check (vitamin D, magnesium, B12, ferritin).
Quick grocery list
Proteins: salmon, sardines, chicken, turkey, legumes (if tolerated), eggs.
Vegetables & fruits: dark leafy greens, broccoli, bell peppers, berries, citrus.
Grains/alternatives (if GF): quinoa, brown rice, certified gluten-free oats.
Fats: extra virgin olive oil, avocado, nuts, seeds, flaxseed.
Fermented: plain yogurt or kefir (if tolerated), sauerkraut, miso (check gluten content).
Spices: turmeric, ginger, garlic (anti-inflammatory).
Low-sugar snacks: nuts, seeds, hummus, vegetable sticks.
How to test if a gluten-free trial is worth it for you
If you haven’t already: ask your neurologist to check tTG-IgA (and total IgA) and/or refer for celiac testing before starting strict GFD (testing can be less reliable after long-term GFD). If positive, also consider gastroenterology referral.
MDPI
If tests are negative but you still want to try GFD: do a strict 8–12 week trial with careful symptom tracking. Improvements reported in case series were often gradual.
White Rose Research Online
What I found about clinical trials (brief)
Recent and ongoing SPS trials are drug/immunotherapy focused (for example, an efgartigimod trial listed in 2025). I could not find any registered randomized diet trials for SPS in trial registries — the strongest diet data are observational/case series (not RCTs). That means diet evidence is suggestive but not definitive.
ClinicalTrials
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Safety and practical notes
Don’t stop neurologic or immunologic treatments without clinician approval.
If you start GFD, ensure adequate calorie and nutrient intake (a naïve removal of many grains can reduce fiber, B vitamins, iron). A dietitian can help prevent deficiencies and ensure taste/sustainability.
If you experience weight loss, worsening weakness, or new concerning symptoms — contact your clinician promptly.
