Gluten psychosis : Has anyone suffered... - Gluten Free Guerr...

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Gluten psychosis

GlutenLadYorkshire profile image

Has anyone suffered any forms of mental health illnesses from or after eating gluten.

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GlutenLadYorkshire profile image
GlutenLadYorkshire
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43 Replies
pvanderaa profile image
pvanderaa

Have your Vitamin B12 and folic acid levels been checked.

I have a B12 deficiency and gluten or dairy cause me to have “brain fog” about 24 hours after eating contaminated foods.

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to pvanderaa

Yes I’m on folic acid and had b12 last year

pvanderaa profile image
pvanderaa in reply to GlutenLadYorkshire

I’m my case, damage to the lining of the gut caused by gluten and dairy may have been the reason that my gut doesn’t recycle B12 properly. Before the B12D was diagnosed, I was starting to get psychological and neurological symptoms. These symptoms have gone away since being on B12 injections which I am now self injecting 1 ml 1000 mcg/ml cyanocobalamin weekly.

I’ll still get brain fog if I get gluten or dairy by mistake.

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to pvanderaa

Yes I had similar experience for some reason even though I avoid gluten I’m still depressed

Regalbirdy profile image
Regalbirdy in reply to GlutenLadYorkshire

Bally,

I’m a dairy free Coeliac. If I eat dairy, (especially cheese) it brings on depression. I suspect that I’m casein sensitive. My understanding is that the casein molecule has a similar structure to that of the gluten molecule, hence the cross reaction.

Hope this helps.

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to Regalbirdy

That’s useful to know maybe I’ll try stopping dairy to see how I do

Regalbirdy profile image
Regalbirdy in reply to GlutenLadYorkshire

If you do, then ensure that you can get all your calcium needs from alternative sources - so that you don’t put yourself at risk of osteoporosis. x

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to Regalbirdy

Good advice l, I currently have a tablet called adcal with is like calcium and vitamin d for ostepinia which is like the stage between normal and osteoporosis

pvanderaa profile image
pvanderaa in reply to GlutenLadYorkshire

When you say you had B12 last year, does that mean you’re not currently on B12 injections?

Go look at the pernicious anemia site on health unlocked for a long list of symptoms of B12D.

I suspect you need regular B12 injections as depression is usually a misdiagnosed B12D psychological symptom that is the result of neurological damage. You want to get any possible neurological damage stopped as soon as possible and then sort of if you need other medications and/or counseling. Do you suffer from anxiety as well? That was the symptom that made my GP want to prescribe antidepressants for me. Eventually he increased my B12.

If you are currently on antidepressant medication, do not stop taking them as that can lead to suicidal thoughts. Not good.

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to pvanderaa

I had a b12 straight into the vein but according to blood tests my b12 was good, I do suffer from anxiety I’m not on any antidepressants atm I’m off to see a psychiatrist on Friday thought.

pvanderaa profile image
pvanderaa in reply to GlutenLadYorkshire

Look for a bunch of questions to ask your psychiatrist at the PAS (pernicious anaemia society). All related to neurological and psychological symptoms.

Start a logbook of all your symptoms and assess your own severity score. Provide this list to each DR and ask for it to be included in your file to monitor progress.

If you can step back from it, acknowledge that you have anxiety and depression and score these as you would any other symptoms.

Any short term memory loss or brain fog? The logbook helps you remember when you go for your Dr visits.

Also log your food and drink and meds to sort out symptoms caused by these. There can be 3 - 48 hour delay is a symptom showing up from food as the gut is involved and delays the onset of the symptoms. Also helps if you have short term memory loss and can’t remember what you ate a couple of hours ago.

Logbook helped me tremendously and I highly recommend going through the extra work needed to keep everything logged. At least until you are on a path to recovery and even then making sure progress is in the right direction each time you try a new food or are given a new medication.

Any alcohol consumption?

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to pvanderaa

Thanks for the advice I’m not a big drinker only special occasions when I was in my 20s I probably drank to much, I’ll definitely write down everything it’s easier than trying to explain things. I saw a psychologist the other week and he said that my cognitive functions were normal apart from the sped performance which could be down to depression.

pvanderaa profile image
pvanderaa in reply to GlutenLadYorkshire

B12 straight into a vein? It probably lasted all of a day and you peed it all away.

Inter muscular (IM) and subcutaneous (subc) are the two normal ways to administer B12. To make it last as long as possible.

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to pvanderaa

Didn’t know that, I’ll mention it next time I see them maybe if I need it they will administer it differently

jox1 profile image
jox1 in reply to GlutenLadYorkshire

blood levels of b12 and folate don't necessarily indicate how well the system utilises the vitamins. look up homocycsteine and methyl malonic acid for clues here - it is possible to test for these but not normally via your gp

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to jox1

I’ll have a look 👍

Ell17 profile image
Ell17

Gluten can most definitely affect you in this way. (It is now a widely known group of symptoms experienced in a subset of people.) If I am accidentally exposed to even the tiniest amounts, in just a matter of minutes intense feelings of anger and rage just wash over me (and it affects my skin for a much longer period of time). It also affects my balance for a few hours. Depression then hits me, and I am not at all myself for several days. But, once my system has had a chance to calm down somewhat from the initial shock, I am back to my normal self. (I also drink lots of water and double up on digestive enzymes. It may not do a thing, but I figure it can't hurt.)

Personally speaking, I do not experience these symptoms (except when glutened) and I am not on any type of psychiatric medications, so this proves as my litmus test for gluten exposures.

I agree that low B12 can cause neurological symptoms. Supplementing methylcobalamin (which is the active and ready to use form, no converting needed) is always a sound idea. (Remember, that there is no such thing as too much B12. Your body will flush what it doesn't need.) Most injections are still the cyanocobalamin form, which the body has to convert. I have used both injections of cyanocobalamin and taken 1000-5000 mcg daily of liquid methylcobalamin. I personally have never felt any better using the cyanocobalamin form. But, I do notice results with the active methylated form.(I don't convert well, so I take the bioavailable forms whenever possible.)

Equally as important, is the balance of ALL of the B Vitamins, not only the B12. An imbalance of B's across the board can aggravate mental health issues, as well. You may want to try taking a balanced methylated B Complex Formula (Thorne is a good brand) and see how you feel. This will also ensure you get folate (not folic acid). You can still take extra methylcobalamin (B12) along with it if needed.

Research (pubmed) has shown that just ONE exposure to gluten excites (and not in a good way) your immune system for THREE months. So, even four micro exposures could ruin a year:/ (I have found this to be true when skin is affected.) So, it seems plausible that it could take that long for depression symptoms to abate (barring another gluten exposure.)

Have you considered other sensitivities?? I react the same way (depression) when exposed to red food dye (aluminum lake). But, once it clears my system the depression goes. Some people are very sensitive and even react to the packaged gluten free foods. Additional sensitivities to other foods, environment, personal care and cleaning products can all cause issues. Anything you eat, breathe, touch, or put on your skin can have a negative impact on health, especially mental. Liver health plays a key role as well. Toxins recirculated due to an overburdened liver can affect the brain. [1000-2000 mg of Milk Thistle daily is good for liver health.]

Google Kelly Brogan, MD. She is a psychiatrist that does not believe in using psychiatric drugs anymore, because they tend to cause more harm than help. She prescribes lifestyle and diet changes to treat her patients now (with much success if the personal testimonials are anything to go by.) It would certainly be worth a try to see if there is any improvement, before deciding to go down the Rx route.

Best wishes. And be sure to give an update on your progress.😊

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to Ell17

Thanks for your reply, it seems that gluten is the devil to some people

Suit profile image
Suit in reply to GlutenLadYorkshire

Gluten is definitely a devil in disguise..

Besides b12, zinc seems to be overseen when talking about deficiencies. Nearly 7/10 with celiac have zinc deficiency.

It too can cause depression, apathy and a lot of other symptoms like ataxia. Low zinc levels have a correlation with depression.

Perhaps you need to boost your zinc levels too.

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to Suit

Umm off to see a gluten neurologist tomorrow so hopefully he will shed some light in to it

Marz profile image
Marz in reply to GlutenLadYorkshire

You still need to do your own reading and learning as knowledge enables you to ask the right questions when meeting Doctors. Try to decide what you hope to achieve at your appointment and make notes before you go. Wishing you well.

captainking profile image
captainking

Been coeliac for 67 years undiagnosed until I was 17 during which time I was very moody.....if I accidentally eat gluten I get very short tempered....I take vitamins including vit D3 it really helps with the winter months here in the north of England other than the vitamins I don't take any other medication I keep myself very fit

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to captainking

I’m already on d3, I go walking and cycling so I’m reasonably fit just really moody even though I haven’t had gluten in months

ianwoowoo profile image
ianwoowoo in reply to captainking

Hi there, all these comments sounds very familiar. Maybe it's a Northern thing, I also live in Yorkshire ! I get periods of Moodiness when the littlest things make me flip my lid and I just can't shake it off. I have regular stomach aches and pains and still have no idea what causes it, it is generally more prevalent when away from home when you have less control over things.

I have never really thought it was Gluten related but now it is making me think again. The mood swings generally come along with periods of low energy when I can't run as well as normal and I just leave washed out. It's hard to know what comes first but I guess this is another thing to consider.

It's nice to hear all these views and opinions !

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to ianwoowoo

Yes I saw a professor Hadjivassiliou who studies gluten and mentioned gluten psychosis, it must be a northern thing he also said that it is rare and only just coming more common

captainking profile image
captainking

Perhaps there may be other issues troubling you .....if I was ever out of love I would get sad

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to captainking

I don’t really know what I want I just need to sort out whatever is the matter hopefully it will go soon

lovejesus7 profile image
lovejesus7

It helps my mental health when I don't eat gluten but I don't have a mental illness due to gluten

I am gluten free due to IBSC

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to lovejesus7

I really struggle with my mental health atm you wouldn’t think gluten would affect you so bad

Marz profile image
Marz in reply to GlutenLadYorkshire

.... more likely the inflammation in the gut is causing a poor uptake of nutrients. How much VitD are you taking ? Do you keep all your test results so you can monitor your own progress ? Ferritin tested ? Iron Profile done ? Thyroid Testing ?

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to Marz

I had all my bloods done yesterday so haven’t had any results yet I take vit d I think it’s 1000g a day so will definitely have to wait.

Marz profile image
Marz in reply to GlutenLadYorkshire

So what was your VitD result before supplementing ? It could be you are not taking enough. Don't forget the important co-factors - magnesium and VitK2-MK7 ...

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to Marz

Haven’t got me results back yet but I think he said if there is anything wrong he’ll ring me

chlorophyle profile image
chlorophyle

I have bipolar 1 disorder(since 1990). I stopped eating wheat in 2012. I also stopped eating white potatoes in Dec 2012 as they caused the same symptoms (delusions and paranoia). I have remained well for the last 6 years and my psychiatrist describes me as "in remission". I had other physical symptoms which have gone away, notably lower back pain and other joint pains.

Marz profile image
Marz in reply to chlorophyle

Having scanned your previous posts I notice you suffer auto-immune issues. Have you ruled out Hashimotos with the correct Thyroid testing ? There are well documented links with low thyroid and bi-polar ...

chlorophyle profile image
chlorophyle in reply to Marz

Thank you for your interest. I have no current physical symptoms but have a history of hypothyroidism. I currently take no supplementation as it caused physical problems. I react badly to chemicals in food and medications.

Suit profile image
Suit

So, I went grocery shopping the other day with my almost 13-year old son.

After a nice walk somewhere, I was abrupted with a question:

"so mum, what are we buying?"

And I realize that I would have been walking all the way through the shop like a nice walk in the forest if I had not been disturbed.

"I have no idea" I replied. "it's all blank. What do we need? “

As he was done picking everything we needed from the vegetable isle he came to me and said.

" I'm done here, we can go now"

And I realized I had been just standing there doing nothing at all.

"I'm sorry. I don't know whats wrong. It's as if I have been glutened. But I don't know from where" I said and I followed him on his shopping.

"what are you doing mum? “ he asked. And I found myself searching for something among nuts and dried fruits.

" I have no idea. It feels like I needed something from here" and started walking towards him, when I realized that I was looking for almond paste.

Back home a couple of hours later I was looking through the drawers in the kitchen. One at the time.. When I suddenly stopped and asked out loud

"what am I even looking for? I don't even remember what I was supposed to do. Probably nothing.."

And my son replied

"you were supposed to take out the baking tin"

"why on earth was I looking through the drawers then?“

Since I did have a rash and joint pain, I wasn't to concerned. Yesterday when my brain was back I even read the label from my chickpeas flour and found that it said "may contain traces of wheat"

It sure did.

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to Suit

There is no question that gluten causes neurological problems, brain fog is one of those problems but it might be worth seeing your doctor you might have some autoimmune disorders that want addressing then again maybe your ok, I do have celiac disease and depression which could be linked to the celiac there looking into it. I’m not medically trained just read a lot of research into the affects of gluten related diseases. Hope you get well soon.

Suit profile image
Suit in reply to GlutenLadYorkshire

❤️

Hopefully you'll be alright from your depression soon.

Have you been gluten free for a long time?

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to Suit

Thank you, I been gluten free about a year although I’ve been coeliac about 4 years but didn’t bother with a gluten free diet till last year

Suit profile image
Suit in reply to GlutenLadYorkshire

Do you think that you are strict enough in your diet?

Maybe, if your depression is linked to gluten, then it won't go away until you're strict enough?

We all have different levels of tolerance for gluten, I seem to have none. Hence I become sick from nearly everything in the gluten free isle, everything that contains derivatives from grain causes at least my rash to flare up.

If you think that your depression is linked to gluten, and it still affects you, then perhaps you are more sensitive to gluten than you know?

Worth a try?

It's not fun, and probably difficult to maintain if depression is your only key to being glutened. It might not be enough of an incitament for staying away from it. And difficult to know if you've actually been glutened or not. Especially not in time to be able to trace it back to the source. Or maybe you'll realize that you are so sensitive that you actually notice those tiny traces..?

But since you are looking for a way to get rid of your depression, then maybe you're motivated enough to be extremely strict for a time?

GlutenLadYorkshire profile image
GlutenLadYorkshire in reply to Suit

I’m almost perfect with my diet I do have the odd hiccup but have been good for the last 5 months, but I think I have accidentally cross contaminated myself a couple of times it’s definitely no fun the diet, I really hope the tablets there going to provide are good enough

Suit profile image
Suit in reply to GlutenLadYorkshire

Yeah.. It's really easy to get glutened by mistake. I hope the tablets will work :)

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