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

Recommended Posts

Mtndog Collaborator

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

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

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

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

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

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

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.

  • 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 replied to lehum's topic in Super Sensitive People
      11

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    2. - Heavenly Flower replied to lehum's topic in Super Sensitive People
      11

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    3. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    4. - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,415
    • Most Online (within 30 mins)
      7,748

    Heavenly Flower
    Newest Member
    Heavenly Flower
    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
      Welcome to celiac.com, @Heavenly Flower!  You're off to a good start but you can certainly branch out some. White rice is fairly devoid of nutrition. Baked potatoes with the skin (washed) would be a better choice for the starch unless, that is, you don't do well with members of the nightshade family. Yams or sweet potatoes would be even better because of the beta carotene. Do you have issues with eggs and dairy? How about fresh fish? What about fresh fruit? There are also non gluten alternative grains like quinoa, buckwheat (not related to wheat) groats and sorghum that are sold by companies like Bob's Red Mill that can be used for hot breakfast cereals. Gluten free oats is also an option, though some celiacs can't do oats because the protein in them (avenin) is similar enough to gluten to cause a reaction. Gluten is found only in wheat, barley and rye.
    • Heavenly Flower
      I was just diagnosed with celiac disease after Thanksgiving. I can't imagine what all you had to do to get all the information you have, it just seems so overwhelming. I am still trying to figure it all out and don't know if the information I'm getting is correct. I have been eating only white rice and chicken breast, pork, or steak and fresh vegetables.  Gluten free pretzels and rice cakes to snack on. But that's about it cause I don't know what I can eat it's to overwhelming.  I don't even know what symptom to look for for possible cross contamination cause I also have microscopic Colitis which has the same symptoms as celiac disease. I'm hoping at least being on this forum I can get information that will help me figure it all out. Sorry I am not able to help you and hope you get the relief you are looking for. 
    • Known1
      I just read this article here on Celiac.com.  For anyone interested in or following this thread, they may also want to read this article for additional insight:  
    • Haugeabs
      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
×
×
  • 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.