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. Oliverg
      - Oliverg posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Glutened

      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar. 2 hours later I was throwing up violently on my hands and knees over the loo. .horrendous stomach pains, My hair was wet fro...
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      19

      My journey is it gluten or fiber?

      Yes, do take your B Complex with Benfotiamine or Thiamax. Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day. Taking them too close to bedtime can keep you too energetic to go to sleep. The Life Extension Benfotiamine with Thiamine is Benfotiamine and...
    3. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      19

      My journey is it gluten or fiber?

      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state...
    4. olivia11
      - olivia11 replied to olivia11's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      suggest gluten free food

      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    5. knitty kitty
      - knitty kitty replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent. People of Mediterranean descent have HLA DQ 7. People of Asian descent have HLA DQ 9. There's other Indigenous populations that have other HLA genes that code for Celiac disease. Are you still having symptoms? What do...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,765
    • Most Online (within 30 mins)
      7,748
    Kevin Zahra
    Newest Member
    Kevin Zahra
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Oliverg
      Glutened

      By Oliverg · Posted

      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar.   2 hours later I was throwing up violently on my hands and knees over the loo.  .horrendous stomach pains,  My hair was wet from sweat every part of my body was wet. What an awful experience, just had a bad headache today  fortunately.    Is their any products/pills anyone takes if they have realised they have just been glutened to make the symptoms a little less worse.  thanks  
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      Yes, do take your B Complex with Benfotiamine or Thiamax.  Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day.  Taking them too close to bedtime can keep you too energetic to go to sleep.   The Life Extension Benfotiamine with Thiamine is Benfotiamine and Thiamine Hydrochloride, another form of thiamine the body likes.  The Thiamine HCl just helps the Benfotiamine work better.   Read the label for how many milligrams are in them.  The Mega Benfotiamine is 250 mgs.  Another Benfothiamine has 100 mgs.  You might want to start with the 100 mg.    I like to take Thiamax in the morning with a B Complex at breakfast.  I take the Benfotiamine with another meal.  You can take your multivitamin with Benfotiamine at lunch.   Add a magnesium supplement, too.  Thiamine needs magnesium to make some important enzymes.  Life Extension makes Neuro-Mag, Magnesium Threonate, which is really beneficial.  (Don't take Magnesium Oxide.  It's not absorbed well, instead it pulls water into the digestive tract and is used to relieve constipation.)  I'm not a big fan of multivitamins because they don't always dissolve well in our intestines, and give people a false sense of security.  (There's videos on how to test how well your multivitamin dissolves.).  Multivitamins don't prevent deficiencies and aren't strong enough to correct deficiencies.   I'm happy you are trying Thiamax and Benfotiamine!  Keep us posted on your progress!  I'm happy to answer any questions you may have.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
    • olivia11
      suggest gluten free food

      By olivia11 · Posted

      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    • knitty kitty
      GI DX celiac despite neg serology and no biopsy

      By knitty kitty · Posted

      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent.   People of Mediterranean descent have HLA DQ 7.  People of Asian descent have HLA DQ 9.   There's other Indigenous populations that have other HLA genes that code for Celiac disease.   Are you still having symptoms?   What do you include in your diet?  Are you vegetarian? Are you taking any prescription medication?  Omeprazole?  Metformin?   Do you have anemia?  Thyroid problems? Are you taking any vitamins or herbal supplements?  
×
×
  • 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.