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Nathan's mom

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Nathan's mom Apprentice

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    1. - trents replied to MagsM's topic in Related Issues & Disorders
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      Inflammation and Menier’s disease link?

    2. - MagsM replied to MagsM's topic in Related Issues & Disorders
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      Inflammation and Menier’s disease link?

    3. - trents replied to MagsM's topic in Related Issues & Disorders
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      Inflammation and Menier’s disease link?

    4. - MagsM replied to MagsM's topic in Related Issues & Disorders
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      Inflammation and Menier’s disease link?

    5. - Scott Adams replied to RMJ's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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      Damage after 13 years gluten free


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    • trents
      Okay, so the term was being used loosely and informally, then.
    • MagsM
      Hi Trents, yes classic Alzheimer's is caused by plaque build up but the diagnosis of Alzheimer's often covers other types of cognitive decline including mild cognitive impairment, short term memory loss and vascular dementia which are all of the issues that my Mom has. She does not show any plaque build up on MRI. 
    • trents
      Alzheimer's is caused by a buildup of beta amyloid plaque tangles in the neurons. I don't see how that would be influenced by hearing loss. I can see where sensory deprivation could contribute to mental decline in indirect ways but Alzheimer's is a disease with a biochemical base.
    • MagsM
      Thank you all for your feedback. I did see the Consultant Otolaryngologist today and unfortunately she is not doing any research into potential functional immune or inflammatory mechanism that could be driving Ménière’s. My Mom was diagnosed with Meniere's at my age (58) and then did develop Alzheimer's in her 70's. The consultant mentioned that my Mom's Alzheimer's could have been triggered from the hearing loss due to the Ménière’s. She then went into worst case scenarios which freaked me out entirely (full hearing loss and cochlear implants)! Apparently it is very important to keep those neural pathways (hearing, balance vision etc.) fully functional to stave off potential brain disease like Alzheimer's. I really would like to figure this out and unfortunately do not have a good functional medic in Ireland who would help me in the diagnostic process.  Consultant today has put me on a betahistine 3x per day for the next 6 months. I am also thinking that I will go gluten free and ramp up the B-complex and Benfothiamine (already ordered). I am still trying to source the tetrahydrofurfuryl disulfide (TTFD). I'll see where I am in a few months, will also test the gut microbiome and see what those results look like.  Once again, I can't thank you all enough - your amazing knowledge and generous time and guidance is truly appreciated!!  
    • Scott Adams
      Your frustration is completely understandable—after 13 years of strict gluten-free living and mostly normal antibody levels, it’s disheartening to still see biopsy evidence of lingering damage, especially without clear guidance from your GI. The subtle improvements (like "focal" vs. "patchy" changes) might suggest some healing, but the persistent villous blunting and lymphocytosis raise valid concerns about ongoing low-level inflammation, cross-contamination, or even refractory celiac disease (though your normal antibodies make this less likely). It’s especially frustrating when your symptoms (nausea, pain) are dismissed with generic advice, and communication feels like a game of telephone with nurses. Switching to a more engaged GI is a great step—someone who’ll actually discuss your biopsy results, explore potential hidden gluten exposures (e.g., medications, shared kitchens), and investigate other culprits (like SIBO, motility issues, or food intolerances that often overlap with celiac). Hang in there—you’re advocating for yourself the right way, and your dedication deserves answers, not canned responses. Hope the new GI provides the clarity you need!
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