Gluten/grains and nightshades - any adverse effect from diet?

[Fen2477]

Hello, I just met with the ALS specialist yesterday, and after having done a comprehensive EMG, MRI of the spine, blood work and physical examination, she concluded that I was at early stages of ALS, with severe muscle weakness concentrated on my arms. My symptoms started with a weak left arm back in March 2024, after I had COVID. In August 2024, the weakness spread to my right arm. For now, my legs are fine, strength-wise.

I had shared with the doctor that I had stopped gluten consumption in October 2024, and had felt muscle spasms significantly reduced shortly after, and even though I i had regained some left arm strength. But once glutened (by accident), the spasms will return, along with muscle atrophy and stiffness. I had tested negative for celiac, and other autoimmune disorders, so it is very perplexing why gluten worsens my condition. I'm inclined to think I have non-celiac gluten sensitivity, but the doctors say that doesn't explain the cause of my denervated muscles. I also had a bad reaction to potatoes (joint pain, more muscle spasms, including to my legs, and migraine that went away after a clean diet).

I'd like to know if anyone else who's also diagnosed has experienced these adverse effects after eating gluten, grains or nightshades and did a diet change help to slow down your progression?

 

[lgelb]

Can you clarify your status? You do not list a diagnosis date but say that you have been diagnosed with ALS? Outside an academic setting, if applicable, we would always advise a second opinion.

Adult-onset food allergies and known food sensitivities are fairly common and it stands to reason that if you avoid trigger foods, you will feel better, whether with ALS or not.

 

[Nikki J]

I tried gluten free after a relative was diagnosed with celiac. Celiac can be an als mimic so I thought worth trying ( denial is real)

I certainly didn’t get better and I think got worse a little faster than usual for me. Obviously if you feel better without gluten avoid it. Re testing if it was by blood I trust it was taken when you were eating gluten? Otherwise it would not be reliable

 

[Fen2477]

Hi, since I saw the ALS specialist yesterday when she drew her conclusion, I would think my diagnosis date was January 8, 2025. I will be starting my first ALC clinic session in Washington, DC in April.

 

[lgelb]

Thank you for clarifying; I have updated your profile.

 

[JAM]

Hello, I’m sorry to hear about your dx. I think you will find this forum very helpful & supportive. My PAL’s comes from an immediate family of 2 siblings with celiac 3 nieces/nephews with it (all confirmed with biopsies). After his dx had him tested, blood test came back fine so he never went gluten free. Also for him it is important to maintain his weight and that would have been more difficult eating gluten free. If you do a search on this forum there are many post regarding the issue.

 

[KimT]

Many people have sensitivities to gluten, especially in the US. Long before I was dx with ALS, Mayo Clinic advised me to stop gluten. Then I found that stopping all grains made me feel much better. I don't know if it affected my very slow progression but it did help my stomach and migraines.

 

[Ribo]

I had thought that I was doing better on a gluten free diet - subjectively for about 8-10 weeks - I thought it helped with my fatigue and I thought that I was eating more, I was gluten free for over 10 months. After 6-8 weeks I wasn't actually feeling any different and I was still loosing so much of weight, maybe a placebo effect for me or wishful thinking, I'm not sure.
For context, we have coeliacs in our family and I thought it was worth trying (also long road to diagnosis for me due to previous cancer history). I still persisted with being gluten free for a while just in case - not sure if this is helpful, just my experience

 

[Fen2477]

Thanks very much for sharing.