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. trents
      - trents replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

      @Healthierbody2026, so you say here that you were diagnosed a few years back but in your first post you say you were recently diagnosed. I am totally confused!
    2. Dr. Gunn
      - Dr. Gunn replied to anya22's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Test interpretations

      As has been pointed out previously, it is not unusual to have mixed tTG and EMA results with active celiac disease. While awaiting your biopsy appointment you could request celiac genetic risk testing. If you don't carry the HLA-DQ2 and/or DQ8 genes, your lifetime risk for celiac disease is < 1%. The celiac risk genes are present in close to 100% of celiac...
    3. Lotte18
      - Lotte18 posted a topic in Publications & Publicity
      0

      Prospective CRISPR research

      Hi all, I'm just wondering if anyone knows whether Theresa Flores of Stanford University has been able to fund her research proposal to use CRISPR technology to directly alter our celiac genetic DNA coding? I know there's been a lot published on using CRISPR to alter wheat so it's "less" aggravating. But no one seems to indicate that wheat would then...
    4. knitty kitty
      - knitty kitty replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

      @Healthierbody2026, Welcome to the forum. We would like some clarification as to whether you have been diagnosed with NCGS or Celiac disease. Many people who have gastrointestinal symptoms are diagnosed with IBD or NCGS without proper investigation into Celiac disease. This can delay a correct diagnosis for as long as ten years or longer. During...
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

      A few starter suggestions for gluten-free living: - one of the other responses to you mentioned the Forums. On any page of this website, there is a blue banner near the top of the page with some menu choices. The menu choice "Forums" drops down and gives a selection. One Forum topic is "Gluten-Free Foods, Products, Shopping & Medications", another...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,702
    • Most Online (within 30 mins)
      7,748
    AMJ59
    Newest Member
    AMJ59
    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

    • trents
      New at gluten sensitivity

      By trents · Posted

      @Healthierbody2026, so you say here that you were diagnosed a few years back but in your first post you say you were recently diagnosed. I am totally confused!
    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      As has been pointed out previously, it is not unusual to have mixed tTG and EMA results with active celiac disease. While awaiting your biopsy appointment you could request celiac genetic risk testing. If you don't carry the HLA-DQ2 and/or DQ8 genes, your lifetime risk for celiac disease is < 1%. The celiac risk genes are present in close to 100% of celiac disease cases. If you do carry the genes, biopsy confirmation is essential given your history of symptoms and tTG antibody results.
    • Lotte18
      Prospective CRISPR research

      By Lotte18 · Posted

      Hi all,  I'm just wondering if anyone knows whether Theresa Flores of Stanford University has been able to fund her research proposal to use CRISPR technology to directly alter our celiac genetic DNA coding?  I know there's been a lot published on using CRISPR to alter wheat so it's "less" aggravating.  But no one seems to indicate that wheat would then have to be grown in a vacuum.  My understanding is that wheat can self cross pollinate/contaminate if it's grown downwind from other strains of wheat.  Go ahead and correct me if I'm wrong.   Anyway, what I'd really like to know is, what's up with research to directly alter celiac DNA coding?  Is Flores the only person out there proposing this?  Has the NIH funded a CRISPR study for us?   Many thanks, Charlotte
    • knitty kitty
      New at gluten sensitivity

      By knitty kitty · Posted

      @Healthierbody2026, Welcome to the forum.  We would like some clarification as to whether you have been diagnosed with NCGS or Celiac disease.  Many people who have gastrointestinal symptoms are diagnosed with IBD or NCGS without proper investigation into Celiac disease.  This can delay a correct diagnosis for as long as ten years or longer.  During that time, health problems related to Celiac disease that occur outside of the gastrointestinal system can show up.  One of those health problems is Diabetes.   I got misdiagnosed with IBD because there was no such thing as NCGS at that time.  I was told I was prediabetic for several years.  I became diabetic and had a cascade of health problems for more than ten years after until I was properly diagnosed with Celiac disease.   Did you have a DNA test to see if you carry any of the genes necessary to develop Celiac disease?  Did you have blood tests for anti-gluten antibodies?  Did you have an endoscopy?  Did biopsy samples show intestinal damage consistent with Celiac disease?  If not... I suggest you have a discussion with your doctor about proper testing for Celiac disease and whether you've had them done.  To diagnose NCGS, the doctor has to first rule out Celiac disease.   @trents could you link that article on antibody tests for Celiac?  Thanks!
    • Aretaeus Cappadocia
      New at gluten sensitivity

      By Aretaeus Cappadocia · Posted

      A few starter suggestions for gluten-free living: - one of the other responses to you mentioned the Forums. On any page of this website, there is a blue banner near the top of the page with some menu choices. The menu choice "Forums" drops down and gives a selection. One Forum topic is "Gluten-Free Foods, Products, Shopping & Medications", another is "Gluten-Free Recipes & Cooking Tips". Others relate to Restaurants, Traveling, and so on. Spend some time surfing through them. - Arguably, the single best food in a gluten-free diet is quinoa. Costco sells a house brand that appears to be gluten-free at a pretty good price. Costco can be a source of some other gluten-free foods. Another resource I found after going gluten-free is AzureStandard.com. I buy a lot of gluten-free foods there. I checked just now and it looks like they have some service to parts of Alabama. - Learn to read food labels carefully and learn what to look for. Don't be shy about calling customer service. - If you can, dedicate your home to be gluten-free. Sort the foodstuffs (any thing that could end up in your mouth) you currently own into "safe" and "not safe". Give away the "not safe". Go through your kitchen systematically and clean everything once. It's like moving into a new apartment of questionable cleanliness. Once it's clean, though, you don't have to worry so much about it. - If you live in a "mixed" household (like mine), start calling gluten-containing foods "poop". Keep as much separate as you reasonably can. While we were transitioning to a safer kitchen overall, we would designate one set of dishes to be safe (and the other for poop). Our kitchen is mostly safe now and we don't segregate dishes anymore. However, when the coprophages want to eat some poop they eat it on the porch and rinse their dishes immediately afterwards. - I don't know the gluten limit for NCGS, but for celiac it is quite low: 20 ppm (parts per million) is the official standard, but some people seem to be sensitive even at that level. One, or maybe a few, breadcrumbs are supposedly enough to trigger symptoms. I haven't tried the experiment myself though. - My transition to gluten-free living has had some silver linings. My health is better. But it has also been a period of personal growth as I've taken up cooking in a serious way. I hope this helps to address your question
×
×
  • 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.