Glutening and Neurological Symptoms

[CharlesBronson]

Hello Everyone

I'm coming up on three years gluten free after being diagnosed with celiac and likely having it all my life (I was very sick by the time I got my diagnosis).

I made my first attempt to eat out again after going gluten-free three years ago and... I got glutened But what's shocking me is how bad the neurological symptoms and anxiety are. Twitches, cold burning nerves, chemical feeling all over, panic, intrusive obsessive thoughts, sleeping all day and night. My god I'm sick! I can understand the stomach cramps and nausea but my nervous system has gone totally haywire.

Just need some reassurance that this is all normal. It's been about a week now and I'm just totally bed-bound most of the time still.

Hope everyone is doing well and feeling recovered.

[GodsGal]

  On 9/4/2021 at 6:56 PM, CharlesBronson said:

Hello Everyone

I'm coming up on three years gluten free after being diagnosed with celiac and likely having it all my life (I was very sick by the time I got my diagnosis).

I made my first attempt to eat out again after going gluten-free three years ago and... I got glutened But what's shocking me is how bad the neurological symptoms and anxiety are. Twitches, cold burning nerves, chemical feeling all over, panic, intrusive obsessive thoughts, sleeping all day and night. My god I'm sick! I can understand the stomach cramps and nausea but my nervous system has gone totally haywire.

Just need some reassurance that this is all normal. It's been about a week now and I'm just totally bed-bound most of the time still.

Hope everyone is doing well and feeling recovered.

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Hi Charles,

I am sorry that happened to you! That's no fun. I've only been gluten free for 18 months. I understand that we become more and more sensitive to gluten as time goes on, and we tend to react more violently.

I have noticed symptoms like increased tingling in my hands when I get "glutened". I think what you are experiencing is not uncommon. I hope you feel better soon! Keep us posted!

[Scott Adams]

It may be a little late, but this article may be helpful:

 

[CharlesBronson]

Thanks for the article. I'm coming around slowly and I'll never risk eating out again.

 

[Russ H]

I develop neurological symptoms after eating gluten - memory problems, depression and paranoia which gradually fade over several weeks gluten free. I have read medical reports of it triggering neurological problems as varied as schizophrenia and ataxia. I have been 'glutened' several times this year and just don't risk eating out now.

[Scott Adams]

You're correct that celiac disease can manifest as a neurological disease in certain people, just like it can as a skin disease (dermatitis herpetiformis) in others, and we've summarized many of this research here:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/schizophrenia-mental-problems-and-celiac-disease/ 

and here:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/depression-and-celiac-disease/

and here:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

[Russ H]

Thanks for sharing those links. Very interesting. I strongly suspect that my mother had coeliac disease. I cared for her for several years after a stroke, and she had similar physical symptoms to mine. She also had chronic mental health problems and was sectioned several times. Like me she was rake thin. I am trying to get my brother (who has adult onset type 1 diabetes) and my aunt to get tested.

'sectioned' is a UK term for being admitted under the Mental Health Act.

[Scott Adams]

A recent study found that 44% of 1st degree relatives of celiacs also have celiac disease, so all first degree relatives should be screened each year via a blood panel.

[Russ H]

  On 9/22/2021 at 4:53 PM, Scott Adams said:

A recent study found that 44% of 1st degree relatives of celiacs also have celiac disease, so all first degree relatives should be screened each year via a blood panel.

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Yes, and there is a common genetic predisposition between coeliac and type 1 diabetes so it is certainly worth my brother being tested.

This summer I stopped at a small hotel in Sweden and the owner had coeliac disease. It was the first person I have met in the flesh with the condition, so it was quite interesting talking to her. Her father had coeliac, and 3 of her 5 brothers have coeliac. She recounted that one of her affected brothers develops depression when he eats gluten.

 

[Scott Adams]

If my memory serves me correctly, Finland has the most celiacs per capita, but the rate is higher in Northern Europe and Ireland, and speculation as to why often includes the theory that the people in those areas were last to adopt farming, and therefor the last to start eating wheat regularly. As I understand it, in Finland you can order a hamburger at McDonald's on a gluten-free bun (which I don't believe that you can do in any other country). 

[Russ H]

I think you can do that in Sweden too, although I haven't tried. I read that screening of blood in Africa shows a similar level of genetic predisposition to coeliac disease as Europe yet the incidence is much lower. So there must be some environmental factor.

[Russ H]

A technical review of coeliac disease and neurological sequelae here. I am increasingly convinced that my mother had celiac disease. Apart from the classic symptoms of celiac disease, this paragraph is an eye opener, particularly occipital calcification (CEC syndrome):

  Quote

Neurological signs are rare in children but as many as 36% of adult patients present neurological changes( Reference Chaudhry and Ravich 77 ). Other neurological manifestations are tremor, myelopathy, brainstem encephalitis, progressive leukoencephalopathy, vasculitis, occipital calcification and myoclonic syndrome. A myoclonic syndrome, often accompanied by ataxia, may occur in celiac disease. Myoclonus may be present as focal, multifocal or generalised convulsions.

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https://www.cambridge.org/core/journals/nutrition-research-reviews/article/progression-of-coeliac-disease-its-neurological-and-psychiatric-implications/0FEE9E54B80338FD7A7E3637FCA085E9

[CharlesBronson]

  On 12/4/2021 at 11:42 AM, Russ314 said:

A technical review of coeliac disease and neurological sequelae here. I am increasingly convinced that my mother had celiac disease. Apart from the classic symptoms of celiac disease, this paragraph is an eye opener, particularly occipital calcification (CEC syndrome):

https://www.cambridge.org/core/journals/nutrition-research-reviews/article/progression-of-coeliac-disease-its-neurological-and-psychiatric-implications/0FEE9E54B80338FD7A7E3637FCA085E9

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Wow.. Eye opening is right... I wonder why I can't seem to find a doctor who knows any of this? I likely had celiac all my life and it was only found when I was 35. Almost 4 years into a strict gluten-free diet and household, I'm still physically disabled from all my neurological symptoms. But my GI doc and even my neurologist say I'm fine...

I wonder if someone like me (long-term celiac with a ton of neuro damage) would benefit from an epilepsy diet?

And, yes, I also suspect my mother had celiac too and that's where I get it from.

Thank you so much for this amazing resource. Best I've ever seen on celiac and neurology.

[Russ H]

  On 12/4/2021 at 4:57 PM, CharlesBronson said:

Wow.. Eye opening is right... I wonder why I can't seem to find a doctor who knows any of this? I likely had celiac all my life and it was only found when I was 35. Almost 4 years into a strict gluten-free diet and household, I'm still physically disabled from all my neurological symptoms. But my GI doc and even my neurologist say I'm fine...

I wonder if someone like me (long-term celiac with a ton of neuro damage) would benefit from an epilepsy diet?

And, yes, I also suspect my mother had celiac too and that's where I get it from.

Thank you so much for this amazing resource. Best I've ever seen on celiac and neurology.

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I think mine started at about the age of 7 and gradually worsened, becoming suddenly much worse at the age of 32 following influenza. Then 20 years of Hell until I finally got diagnosed. I was developing neurological symptoms but they seem to be improving slowly. Most doctors don't seem to be aware of how serious coeliac disease is.

I don't know the epilepsy diet - is that similar to the ketogenic diet? I am concentrating on eating a nutritious diet as I have likely been malnourished for so long.

[CharlesBronson]

  On 12/4/2021 at 7:39 PM, Russ314 said:

I think mine started at about the age of 7 and gradually worsened, becoming suddenly much worse at the age of 32 following influenza. Then 20 years of Hell until I finally got diagnosed. I was developing neurological symptoms but they seem to be improving slowly. Most doctors don't seem to be aware of how serious coeliac disease is.

I don't know the epilepsy diet - is that similar to the ketogenic diet? I am concentrating on eating a nutritious diet as I have likely been malnourished for so long.

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Oh wow. You suffered for a long time too! You must have had "silent" symptoms like me where I didn't vomit or have diarrhea. I'm glad to hear your neuro symptoms are improving. My progress is so slow it's agonizing.

Yeah, from what I've been reading an epilepsy diet is high fat/specific carbs (no gluten, grains or starch). I'm not sure it would help, but it's something I'd consider in the future as my neurological symptoms are still debilitating and I'm so sensitive to foods that it's hard to eat a "normal" nutritious diet. I'm sure I could live on meats and low starch veg if it helped.

[Russ H]

  On 12/5/2021 at 12:39 AM, CharlesBronson said:

Oh wow. You suffered for a long time too! You must have had "silent" symptoms like me where I didn't vomit or have diarrhea. I'm glad to hear your neuro symptoms are improving. My progress is so slow it's agonizing.

Yeah, from what I've been reading an epilepsy diet is high fat/specific carbs (no gluten, grains or starch). I'm not sure it would help, but it's something I'd consider in the future as my neurological symptoms are still debilitating and I'm so sensitive to foods that it's hard to eat a "normal" nutritious diet. I'm sure I could live on meats and low starch veg if it helped.

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I had foul smelling fatty stools, but I did not realise until I stopped having them. I was also plagued with body odour, memory problems, bad breath, difficulty concentrating, tendonitis and weight loss. All pretty much gone now.

I feel a little bit better every day. I hadn't realised just how ill I was before, and for how long. I have moved back to the UK after living in Sweden for almost a year as it is so difficult for coeliacs there - impossible to eat out and very limited range of foods in supermarkets. Scandinavia is surprisingly backward. London is heaven by comparison. Tonight I went out and had gluten-free fish and chips and stopped at a pub on the way back that had gluten-free beer on draught.

I used to be very sensitive to starchy food and would swell up like a balloon. I suspect I had a dysbiosis and fermentation in the small intestine. This abruptly resolved after 3 months strictly gluten-free. I also ate lots of fermented foods to try and restore healthy gut flora.

I have a theory that some of the symptoms I had came from the dysbiosis caused by coeliac disease. It causes bacterial overgrowth in the small intestine, which combined with a leaky gut allows fermentation products to enter the bloodstream. I was being poisoned. Have you tried a dysbiosis diet? There are various plans but basically, avoid food with FODMAPS and regularly consume probiotic food like cheese, coconut yoghurt and kefir.

https://primehealthdenver.com/dysbiosis-diet/