Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Another Neurology Question


eta5

Recommended Posts

eta5 Newbie

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

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 Enthusiast

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

eta5 Newbie
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 Enthusiast

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 Explorer

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 Mentor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



eta5 Newbie
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 Mentor
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 Proficient

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 Collaborator
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 Enthusiast

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

Treen Bean Apprentice

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,049
    • Most Online (within 30 mins)
      7,748

    AMCONRAD
    Newest Member
    AMCONRAD
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I'm not a gastro doctor, but it seems reasonable to conclude that they would be able to spot any cancer-related issues during the endoscopy, at least in the areas that were checked.
    • Matt13
      Sorry cut out. Scott! Thanks You are really the master of this things! Thanks! One more question please, i did 2 EGD. In first EGD there was taken 2 samples from duodenum where they found MARSH 3b. In second EGD after 1year (i described in first post of this topic) they have taken multiple Samples from duodenum and jejunum and everything is ok (other than some of the samples is not readable but the explanation is very small and short, villi form good samples is OK and  they only found inflammation in lamina propria. Sorry, I am little overwhelm by this and scared so dr.google almost every-time frightens me. Would my GI and histology expert doctor see if there were like something serious like small bowel cancer or neoplasms(especially in histology)?  
    • Matt13
      Scott! Thanks You are really the master of this things! Thanks! One more question please, i did 2 EGD. In first EGD there was taken 2 samples from duodenum where they found MARSH 3b. In second EGD after 1year (i described in first post of this topic) they have taken multiple Samples from duodenum and jejenum. Would doctor GI and histology expert doctor see if there were like something serious like small bowel cancer or neoplasms(especially in histology)?
    • Scott Adams
      It's quite common for the mucosa to appear normal during an endoscopy in patients with celiac disease, especially in cases of Marsh 3a or 3b histological changes. Studies have shown that the "naked eye" assessment of the small intestine during endoscopy often misses the subtle changes associated with early or less severe villous atrophy. This is why multiple biopsies from different parts of the duodenum, including the bulb, are essential for a reliable diagnosis. Visual clues like scalloping, nodularity, or atrophy may not always be visible, particularly in patients with less advanced disease. In fact, research indicates that histology can reveal significant findings even when the mucosa looks normal on endoscopy, reinforcing the need for biopsy as the gold standard for diagnosing celiac disease. For anyone preparing to have an endoscopy, it's important to ensure that your gastroenterologist takes multiple biopsies from various areas to increase the likelihood of an accurate diagnosis.
    • Matt13
      Thanks Scott! One more question how many of celiac had normal mucosa on naked eye (i mean endoscopy) but histology was postive like marsh 3 a or b?  
×
×
  • Create New...