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Sudden Encephalopathy And Possible Celiac?


Mtndog

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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


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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.


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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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