Another Neurology Question

[eta5]

Apologies for all these questions...

I just read an article that stated the neurological effects of Celiac cannot be reversed. Has anyone else heard this? I want to believe the fog lifts, but right now I have very little energy and am still completely sluggish (I was officially diagonosed on Labor Day). I have an appointment with a nutritionist tomorrow, but am wondering if I should also be going to see a psychologist as well. Any thoughts?

[ShayFL]

Im healing. Migraines gone. Neuropathy nearly gone. Vertigo better. Depression Gone. ALL neurological symptoms.....I am healing on a gluten-free diet. And so are many others on this board.

That article was incorrect.

[Nancym]

I know lots of people with improved neurological symptoms. Some swear that taking B12 (methy sort, not cyano) helped them recover faster.

[eta5]

  ShayFL said:

Im healing. Migraines gone. Neuropathy nearly gone. Vertigo better. Depression Gone. ALL neurological symptoms.....I am healing on a gluten-free diet. And so are many others on this board.

That article was incorrect.

THANK YOU!

[MELINE]

I guess that article may wanted to say that in some cases severe neurological problems may not be reversable. But I guess that is not your case......Just to let you know that my toes and my fingers used to have a very strange feeling like pinching, and now I only get that when glutened. Sometimes I did not feel my toes. That is also gone. Hope you feel better.

[mftnchn]

You are early in the healing process, so hang in there. Focus first on removing gluten strictly as there are many hidden sources.

The brain fog and sluggishness hopefully will improve.

If it doesn't, there may be a further cause that you'll have to detect. For me lyme disease impacts both of these symptoms. Also I recently discovered that even being gluten and soy free for many months, and milk free for 10 months before reintroducing small amounts, I have still not healed very well and am unable to digest things very well, especially carbs. My doctor put me on SCD and I have had a good response, especially improving in these two symptoms.

[ravenwoodglass]

Another neuro here. I suffered from the related neuro issues for over 40 years before diagnosis. If I can heal anyone can. The only neuro symptom that I still have after 6 years gluten-free is a bit of ataxia. It has resolved a great deal, I no longer need to hang on to walls or use canes (unless I get glutened). I haven't had another migraine since I was diagnosed and within a couple of years gluten-free I regained the reflexes in my legs. I lost those at about age 10. The reflexes are sluggish and not very strong but I do have them again. I also now can move my right leg normally not drag it when I walk. The amount of recovery can vary, and unfortunately most ataxia cases do not resolve completely but most of the other neuro stuff like the brain fog can resolve pretty quickly.

As advised do get yourself some sublingual B12, the sublingual part is really important, that will help the healing process and be a bear about being really strict. Check everything you come into contact with and avoid gluten distilled grains in any form until you have healed. Then challenge them if they are something you want in your diet. I have noticed that celiac folks with strong neuro effects do tend to not tolerate them.

[eta5]

  ravenwoodglass said:

Another neuro here. I suffered from the related neuro issues for over 40 years before diagnosis. If I can heal anyone can. The only neuro symptom that I still have after 6 years gluten-free is a bit of ataxia. It has resolved a great deal, I no longer need to hang on to walls or use canes (unless I get glutened). I haven't had another migraine since I was diagnosed and within a couple of years gluten-free I regained the reflexes in my legs. I lost those at about age 10. The reflexes are sluggish and not very strong but I do have them again. I also now can move my right leg normally not drag it when I walk. The amount of recovery can vary, and unfortunately most ataxia cases do not resolve completely but most of the other neuro stuff like the brain fog can resolve pretty quickly.

As advised do get yourself some sublingual B12, the sublingual part is really important, that will help the healing process and be a bear about being really strict. Check everything you come into contact with and avoid gluten distilled grains in any form until you have healed. Then challenge them if they are something you want in your diet. I have noticed that celiac folks with strong neuro effects do tend to not tolerate them.

Thank you so much. I got some b12 as advised. Though what does the sublingual part mean and do you have a brand you would suggest?

[ravenwoodglass]

  eta5 said:

Thank you so much. I got some b12 as advised. Though what does the sublingual part mean and do you have a brand you would suggest?

Sublingual means it disolves under the tongue. That is really important because the damage to our gut prevents regular oral B12 vitamins from being used by the body. I use Country Life, I find it at my local health food store but there are many good brands available. Just make sure it says gluten free and sublingual on the bottle. The dosages will seem high, don't worry about that. B12 is a water soluable vitamin and there are no toxic levels. Any excess is excreted.

[jerseyangel]

In my experience, the neuro problems took the longest to ease up. I've been gluten-free for a little over 3 years. The brain fog, fatigue, tingling, numbness, feelings of heat, and anxiety began to get better at around 18 months. I had noticed an improvement early on, but it didn't last.

I also used sublingual vitamin B12 for the first 6-9 months or so.

Some went away, others are still there but much milder. I was ill for many years before going gluten-free.

[happygirl]

  eta5 said:

I just read an article that stated the neurological effects of Celiac cannot be reversed.

Could you share the article --- what did they mean when they said 'neurological'?

[ShayFL]

I use Jarrow B12 subs and Pure Encapsulation liquid (hold in my mouth for 3 minutes or so). Both gluten-free.

[Treen Bean]

My neurological symptoms are finally gone after 2 years on the diet. However, when I get "glutened" my symptoms return for 2-3 days.