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 HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    2. HAUS
      - HAUS posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free...
    3. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

      Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...
    4. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    5. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,433
    • Most Online (within 30 mins)
      7,748
    Caty
    Newest Member
    Caty
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
×
×
  • 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.