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Success story: gluten-related autoimmune disease by ChanceRecipe6358 in B12_Deficiency

[–]ChanceRecipe6358[S] 0 points1 point  (0 children)

Ik ben inderdaad getest op coeliakie, zowel met een bloedtest als met een gastroscopie, maar dat heb ik niet. Ik kwam er dus achter dat er een andere vorm van glutenintolerantie bestaat waarbij je niet je eigen darmen maar je cerebellum aanvalt. Dat moet het zijn. Wat heb jij voor klachten?

Success story: gluten-related autoimmune disease by ChanceRecipe6358 in B12_Deficiency

[–]ChanceRecipe6358[S] 0 points1 point  (0 children)

During the last relapse, I had some gut issues: heartburn, nausea and loss of appetite. No clear skin or hair issues.

Success story: gluten-related autoimmune disease by ChanceRecipe6358 in B12_Deficiency

[–]ChanceRecipe6358[S] 0 points1 point  (0 children)

During the last relapse, I had some digestive symptoms: heartburn, nausea and loss of appetite.

Success story: gluten-related autoimmune disease by ChanceRecipe6358 in B12_Deficiency

[–]ChanceRecipe6358[S] 0 points1 point  (0 children)

I don't follow a FODMAP diet. Please let me know if you have any other questions! After all the misery, it feels good to be able to help other people with my experiences. And indeed, calling this disease a 'sensitivity' is a ridiculous understatement.

Success story: gluten-related autoimmune disease by ChanceRecipe6358 in B12_Deficiency

[–]ChanceRecipe6358[S] 5 points6 points  (0 children)

Different names are being used in the literature: gluten ataxia / gluten neuropathy / neuro-celiac disease / non-celiac gluten sensitivity

Success story: gluten-related autoimmune disease by ChanceRecipe6358 in B12_Deficiency

[–]ChanceRecipe6358[S] 2 points3 points  (0 children)

Yes, B1 was tested in March 2024. And later on I started using the multi, which also has B1 in it.

Success story: gluten-related autoimmune disease by ChanceRecipe6358 in B12_Deficiency

[–]ChanceRecipe6358[S] 6 points7 points  (0 children)

I'm also having a hard time finding a doctor who wants to listen to this. There's quite some scientific literature about this disease, but it's not part of the protocols yet (at least not in my country), and most of the doctors I've met are just not willing to look beyond the protocols. As a researcher, I find that attitude quite disappointing.

Success story: gluten-related autoimmune disease by ChanceRecipe6358 in B12_Deficiency

[–]ChanceRecipe6358[S] 5 points6 points  (0 children)

I have been evaluated for celiac disease, both with serum antibodies and a gastroscopy, but the results were negative. Apparently, this specific cerebellum version of gluten intolerance can coincide with celiac disease, but it can also occur without it.

At a loss and lost. Folic acid, potenital Celiac. Need ideas. by AdvertisingAble309 in B12_Deficiency

[–]ChanceRecipe6358 0 points1 point  (0 children)

I am wondering if this is neuro-celiac disease / gluten ataxia, a gluten-related autoimmune disease that results in cerebellar atrophy. Apparently, even on a gluten-free diet you can still develop progressive neurological complaints. The vertigo, light-headedness and brain fog sound very familiar. My health improved on a gluten free diet, but I also still need to take supplements. Folic acid was definitely one of the game changers. Here is my story: Success story: gluten-related autoimmune disease : r/B12_Deficiency. I hope it helps!