Jump to content

  • 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

Sudden Encephalopathy And Possible Celiac?

Mtndog

By Mtndog
in Related Issues & Disorders

Recommended Posts

Mtndog Collaborator
Mtndog
Posted

Hi Y'all- My aunt woke up one day two weeks ago (I just found out today) and had NO short term memory. She's had all sorts of tests ruling out tumors, etc and they haven't mentioned Alzheimer's or dementia because it was so sudden. My cousin told me the doctors are baffled.

I told her that maybe celiac was a possibility since her blood niece (I'm adopted so I'm not blood related) has celiac on her siter's side has celiac (my mom- her sister- died of stomach cancer and no one has a CLUE why she got it).

I told her to have her tested.

Encephalopathy can be caused by malnutrition so I'm wondering if malabsorption is an issue.

Any thoughts? I'm really worried. :(

I found this link, but could it happen THAT suddenly?

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


georgie Enthusiast
georgie
Posted

My mother had that happen. She woke up and didn't know who she was , or where she was , or anything at all. It was really scary. Mums improved. She had to go back to bed for a long deep sleep of 20 hours ( drug induced ) and then when she rewoke she was lots better. There is a name for it - can't recall it now. Does that sound like your aunt ? Mum's happened 20 years ago now, and she made nearly a full recovery with just some memory loss.

Mtndog Collaborator
Mtndog
Posted
  • Author

No, my aunt remembers everything but what happened five minutes ago.

Here's the freaky thing. i emailed her daughter to tell her about the neurological part of celiac and my cousin emailed me back to say that my aunt has known for several years that she has a "mild" case of celiac but hasn't been following the diet because her symptoms aren't that bad.

I wanted to scream! I told her that you can have no symptoms and still be doing damage internally and that I have friends whose only symptoms are neuro.

What really freaks me out is that this is my mom's side of the family and my mom died of a rare form of stomach cancer 3 years ago. She was never tested for celiac and if she had it, she was asymptomatic. :ph34r:

Guest nini
Guest nini
Posted

I'm so sorry about your aunt, I haven't got a clue... isn't it frustrating when you find out someone you love KNOWS they have a problem but aren't doing anything about it because "it's not that bad"??? Especially with Celiac... the effects are cumulative, it can only get worse if she doesn't decide to stick to the diet.

Mtndog Collaborator
Mtndog
Posted
  • Author

Thank you for the support. Sometimes I feel like the celiac police, but I just want to spare everyone else what Ii've been through. Argghhh!

Guest adamssa
Guest adamssa
Posted

Hi!

I'm sorry that I didn't notice this thread earlier. I had something somewhat similar happen to me--when I first got long lasting brain fog it came on suddenly. I was having really terrible gi problems at the same time and dizzy after eating. At first, after the severe dizziness went away my mind was clear. Then, one horrible day last year I got very, very, dizzy and was in a lot of pain and ended up in the ER. I then had brain fog (and at first it was pretty severe) that did not lift entirely until this summer after I had been gluten-free for a few months. (Then it came back and now I"m getting it under control again...long story...I post obssively about possible fog causes :)

It was very, very, very, very scary and depressing for me, and I know that you are more mentioning memory loss than brain fog. But, if I can recover from a sudden onset of brain fog that severe than a good thing is that it is possible for similar things to happen to everyone.

Unfortunatly, the thing with me is that there were a lot of factors. I had my gallbladder out shortly after going to the ER, they thought that was it. My own theory though, is that it was a combination of that and the gluten, and that at some point something just tipped the balance and my body couldn't take anymore. Something else to look into is a severe hypoglycemia episode.

The good and bad thing about message boards is that we all post about our own experiences, and try and connect everything that happens to someone else with what's happened to us to make sense of it. Sometimes it's hard to know when you should make connections or not. But, I guess I would say that I would guess that fog can suddenly happen because of a gluten probem.

all the best,

Sara

AndreaB Contributor
AndreaB
Posted

Bev,

I'm sorry about your Aunt. It's so frustrating when people think Celiac isn't that bad.

Please keep us posted if you will.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Water filters are a potential problem for Celiac Disease

      What non organic or nonorganic molecules from a plastic bottle of water can trigger a reaction that I have only experienced during an auto immune experience? There really should not be any organic molecules in such a bottle. I seen a thread where it was mentioned that his refrigerator water filter tested positive for gluten when he had it checked. If...
    2. Scott Adams
      - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Reverse Osmosis (RO) Water

      It’s understandable to want to be cautious, especially after experiencing symptoms. However, there is currently no scientific evidence that reverse osmosis or standard activated carbon water filters expose people to gluten in amounts that would trigger celiac disease. Gluten is a protein, and if any starch-based binder were used in filter manufacturing, ...
    3. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Yeast extract

      It’s understandable to look for bigger explanations when you’re dealing with complex symptoms, but the current scientific consensus does not support the idea that celiac disease evolved as a defense against Candida. Celiac disease is a well-characterized autoimmune condition triggered specifically by gluten in genetically susceptible individuals (HLA-DQ2...
    4. Scott Adams
      - Scott Adams replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      14

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      It sounds like you’ve put a lot of effort into tracking patterns, and that kind of awareness can be helpful. With celiac disease specifically, though, the only confirmed immune trigger is gluten. Reactions to dairy are common after diagnosis because intestinal damage can temporarily reduce lactase, leading to lactose intolerance — but that’s different from ...
    5. Scott Adams
      - Scott Adams replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Water filters are a potential problem for Celiac Disease

      I completely understand wanting to track down every possible source of exposure after a celiac diagnosis, especially when symptoms are distinct and repeatable. That said, there’s currently no credible evidence that bottled water — including filtered water products like Gatorade water — contains gluten from filter materials. Activated carbon filters are t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,570
    • Most Online (within 30 mins)
      7,748
    Chanty
    Newest Member
    Chanty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • YoshiLuckyJackpotWinner888
      Water filters are a potential problem for Celiac Disease

      By YoshiLuckyJackpotWinner888 · Posted

      What non organic or nonorganic molecules from a plastic bottle of water can trigger a reaction that I have only experienced during an auto immune experience? There really should not be any organic molecules in  such a bottle. I seen a thread where it was mentioned that his refrigerator water filter tested positive for gluten when he had it checked. If I went to physician to get checked for other possible triggers from a water bottle, I don’t think that will go anywhere. Again, distilled water containers cause no reactions. I’m not an industry expert, but something is there.  I don’t think that this is a case of microplastics causing this. Too bad we can’t call upon some third party investigation.  
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      It’s understandable to want to be cautious, especially after experiencing symptoms. However, there is currently no scientific evidence that reverse osmosis or standard activated carbon water filters expose people to gluten in amounts that would trigger celiac disease. Gluten is a protein, and if any starch-based binder were used in filter manufacturing, it would not pass through RO membranes or remain in finished bottled water at clinically meaningful levels. Plain water — filtered, RO, or bottled — does not contain gluten unless it is intentionally added (which would require labeling). Steam-distilled water is certainly safe, but it is not considered medically necessary for people with celiac disease. If reactions are occurring, it may be helpful to explore other potential explanations with a healthcare provider rather than assuming filter-related gluten exposure.
    • Scott Adams
      Yeast extract

      By Scott Adams · Posted

      It’s understandable to look for bigger explanations when you’re dealing with complex symptoms, but the current scientific consensus does not support the idea that celiac disease evolved as a defense against Candida. Celiac disease is a well-characterized autoimmune condition triggered specifically by gluten in genetically susceptible individuals (HLA-DQ2 or HLA-DQ8). While some laboratory studies have shown that certain Candida proteins (like Hwp1) share limited sequence similarities with gluten or tissue transglutaminase (tTG), that does not mean Candida causes celiac disease or commonly produces false-positive tTG tests in clinical practice. Anti-tTG IgA remains a highly specific and validated marker for celiac when used appropriately (especially alongside total IgA testing and, when indicated, biopsy). IgG antibodies to Saccharomyces cerevisiae (ASCA) are more commonly associated with Crohn’s disease and are not considered diagnostic for celiac. There is ongoing research into microbiome interactions and immune cross-reactivity, but at this time there is no evidence that yeast exposure from foods triggers celiac autoimmunity in people without gluten exposure. If symptoms persist despite a strict gluten-free diet, it’s best to work with a gastroenterologist to rule out other conditions such as IBD, SIBO, non-celiac food intolerances, or refractory celiac disease rather than assuming a fungal-driven mechanism.
    • Scott Adams
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By Scott Adams · Posted

      It sounds like you’ve put a lot of effort into tracking patterns, and that kind of awareness can be helpful. With celiac disease specifically, though, the only confirmed immune trigger is gluten. Reactions to dairy are common after diagnosis because intestinal damage can temporarily reduce lactase, leading to lactose intolerance — but that’s different from casein sensitivity. IgG food panels, including yeast, are generally considered markers of exposure rather than proof of clinical intolerance. Aged cheeses like Irish cheddar are typically gluten-free, though they do contain casein and natural cultures. If symptoms are strong and repeatable, it may be worth working with a gastroenterologist or allergist to sort out true allergies, intolerances, or other GI conditions rather than assuming multiple cross-reactive immune triggers.
    • Scott Adams
      Water filters are a potential problem for Celiac Disease

      By Scott Adams · Posted

      I completely understand wanting to track down every possible source of exposure after a celiac diagnosis, especially when symptoms are distinct and repeatable. That said, there’s currently no credible evidence that bottled water — including filtered water products like Gatorade water — contains gluten from filter materials. Activated carbon filters are typically bound with food-grade binders, and if any starch were used in manufacturing, it would not remain in the finished water at measurable or biologically active levels. Plain water itself does not contain protein, and gluten is a protein. Major beverage companies also have strict allergen control programs, and gluten would need to be declared if intentionally added. If symptoms are occurring consistently after certain products, it may be worth discussing with a physician to explore other potential triggers, but at this time distilled water is not considered medically necessary for people with celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.