• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Gluten Psychosis: Confirmation of a New Clinical Entity

natasa778

Senior Member
Messages
1,774
http://www.mdpi.com/2072-6643/7/7/5235/htm

A 14-year-old girl came to our outpatient clinic for psychotic symptoms ...

In May 2012, after a febrile episode, she became increasingly irritable and reported daily headache and concentration difficulties. One month after, her symptoms worsened presenting with severe headache, sleep problems, and behavior alterations, with several unmotivated crying spells and apathy. Her school performance deteriorated, as reported by her teachers. The mother noted severe halitosis, never suffered before. The patient was referred to a local neuropsychiatric outpatient clinic, where a conversion somatic disorder was diagnosed

...
She also presented weight loss (about 5% of her weight) and gastrointestinal symptoms such as abdominal distension and severe constipation. She was admitted to a psychiatric ward....

...
Due to the abnormal autoimmune parameters and the recurrence of psychotic symptoms, autoimmune encephalitis was suspected, and steroid treatment was initiated. The steroid led to partial clinical improvement, with persistence of negative symptoms, such as emotional apathy, poverty of speech, social withdrawal and self-neglect

...
In September 2013, she presented with severe abdominal pain, associated with asthenia, slowed speech, depression, distorted and paranoid thinking and suicidal ideation up to a state of pre-coma.

...
In November 2013, due to gastro-intestinal symptoms and further weight loss (about 15% of her weight in the last year), a nutritionist was consulted, and a gluten-free diet (GFD) was recommended for symptomatic treatment of the intestinal complaints; unexpectedly, within a week of gluten-free diet, the symptoms (both gastro-intestinal and psychiatric) dramatically improved, and the GFD was continued for four months. Despite her efforts, she occasionally experienced inadvertent gluten exposures, which triggered the recurrence of her psychotic symptoms within about four hours. Symptoms took two to three days to subside again.

...
During the second day of wheat flour intake, the girl presented headache, halitosis, abdominal distension, mood disorders, fatigue, and poor concentration, and three episodes of severe hallucinations.

...
Due to parental choice, the girl did not continue assuming gluten and she started a gluten-free diet with a complete regression of all symptoms within a week. The adherence to the GFD was evaluated by a validated questionnaire [6]. One month after AGA IgG and calprotectin resulted negative, as well as the EEG, and ferritin levels improved. She returned to the same neuro-psychiatric specialists that now reported a “normal behavior” and progressively stopped the olanzapine therapy without any problem. Her mother finally recalled that she was returned a “normal girl”. Nine months after definitely starting the GFD, she is still symptoms-free.
 

Hip

Senior Member
Messages
17,857
I would think that the psychosis cannot have been due to gluten alone, since the girl went through 14 years of life presumably eating gluten without any problems.

My guess is that this girl probably contracted some type of chronic infection, which changed the dynamics in her gut, such that gluten then became a problem for her.

The report said the girl's problems appeared after a febrile episode, so that suggests that was when an infection was caught.


I found this article about wheat and schizophrenia interesting:

Anyway, there's a funny thing about schizophrenia, turns out that quite a few of the adult schizophrenics on an inpatient psychiatric unit in 1967 happened to have a major history of celiac disease (gluten/wheat intolerance) as children. As in 50-100 times the amount of celiac disease that one would expect by chance. Celiac doctors also noticed their patients were schizophrenic about 10X as often as the general population. That's a lot! In addition, epidemiological studies of Pacific Islanders and other populations showed a strong, dose-dependent relationship between grain intake and schizophrenia. The gluten-free populations had extremely rare occurrence of schizophrenia - just 2 in 65,000 versus about 1 in 100 as we have in the grain-eating West. When populations Westernized their diets (flour, sugar, and beer), schizophrenia became common. In some clinical trials, gluten made new-onset acutely ill schizophrenics much worse, but only occasional long-term patients responded to gluten restriction. The long-term sufferer has already had a lot of damage - if wheat somehow toxic to the brain, then it would be vital to stop the insult early on in the course of the disease to see improvement.

National Institutes of Health investigators looked for poisonous protein fragments derived from gluten, gliadin (wheat proteins), and casein (a milk protein). They found them - potent opiate (yes, opiate as in morphine. Or heroin) analogs they called "exorphins." Many of these studies were done in rats, and the results are very creepy if you are fond of bread and milk (or rats). Turns out, you take wheat gluten, add stomach enzymes, and you end up with fragments of proteins that are potent opiates (1 (link is external)). The cute thing is these fragments aren't digested by the small intestine and definitely end up in the body and brain of rats that are fed gluten orally. Inject these same proteins directly into the brains of poor unfortunate rats, and you get rat seizures. Interestingly, people with schizophrenia seem to have a lot of these opioid-like small gluten-derived peptides in their urine. Way more than people without schizophrenia.

Let me review what is perhaps the most important part of the Dohan paper - a gluten-free diet definitely improved some of the new-onset schizophrenics on the inpatient unit. Not all of them. But 2 out of 17 or so. Putting back the wheat made the affected a lot worse. In another study, 115 patients on a locked ward were all given a gluten free milk free diet. They were released into the community on average twice as fast as the similar patients on another, diet as usual ward (p=.009).
 

barbc56

Senior Member
Messages
3,657
One case is not enough information to make this conclusion. It may be correct, it may not. It may be a coincidence that she felt better or something else.

I'm surprised the authors came to this conclusion. I need to look at it again as maybe it's a case study which is a bit different as far as what conclusions are drawn.

What do the authors mean when they say "paranoid thinking and suicidal ideation up to a state of pre-coma."?

I haven't heard of the term "pre coma".


Barb
 

Hip

Senior Member
Messages
17,857
One case is not enough information to make this conclusion. It may be correct, it may not. It may be a coincidence that she felt better or something else.

Remember that "she occasionally experienced inadvertent gluten exposures, which triggered the recurrence of her psychotic symptoms within about four hours".

So this is not a one off event, but rather multiple occasions where gluten has triggered psychosis in this patient.
 

barbc56

Senior Member
Messages
3,657
It's still not enough information. Attributing symptoms after the fact can be very biased. How many times was she inadvertently exposed and didn't have symptoms?

It's certainly intriguing as a theory but I'm not sure what it all means as far as drawing any conclusions.

Barb

ETA

Okay, the authors kind of redeem themself here. It still seems somewhat tenuous. I could not make the quote function to work.o_O

"The present case report shows that psychosis may be a manifestation of NCGS, and may also involve children; the diagnosis is difficult with many cases remaining undiagnosed. The pathogenesis of neuropsychiatric manifestations of NCGS is an intriguing and still poorly understood issue. Well designed prospective studies are needed to establish the real role of gluten as a triggering factor in these diseases."
 
Last edited:

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I had no reason to believe I had a celiac or gluten problem. (In spite of the fact that I always had belly aches, and only wore elastic waists) During my worst year of ME, my appetite deteriorated, my nervous system was a mess, my connective tissue symptoms manifested in a system so stuck that it took me 15-20 myofascial sessions to relieve the constant pain and and immobility. I was over-reactive to any and every stimulus. In fact, I was researching exit strategies.

When I encountered the label Gut and Psychology Syndrome, the name leaped out as a description of my hell. Within 3 days gluten/dairy free, my nervous system calmed by at least 50%. Within 2 weeks the remaining tendonous holding in my hands, Dupuytrens Contractures, had melted. And yet when I returned to my GP, he looked at his screen, then said, "But you don't have celiac."
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
Gluten intolerance could be recently acquired... as a result of recent infection, or environmental. Even if it was not recently acquired, the tolerance itself could have reached a threshold.
 

natasa778

Senior Member
Messages
1,774
I would think that the psychosis cannot have been due to gluten alone, since the girl went through 14 years of life presumably eating gluten without any problems.

My guess is that this girl probably contracted some type of chronic infection, which changed the dynamics in her gut, such that gluten then became a problem for her.

The report said the girl's problems appeared after a febrile episode, so that suggests that was when an infection was caught.

I found this article about wheat and schizophrenia interesting:


Absolutely. Isn't this what most people are dealing with when we talk about deterioration after an infection or a vaccine or another type of trigger. I hear this about asd cases all the time. This trigger pulls with itself all kinds of other pathologies, gut/food sensitivities being often the major one.

It'd be interesting to know if there is something intrinsic to gluten that makes it a prime candidate for secondary pathology, or does it become a problem simply because it is so omnipresent in the diet and the gut. I.e. are we looking at some sort of 'mimicking' autoimmune mechanism (whereas the pathogen was hiding behind what was available at the time) where the host immue system mistakes wheat/gluten for a pathogen. I always wondered if there is any gluten sensitivity issues in Asian people who don't eat it daily. Would rice instead be causing similar symptoms in say a Chinese person who never consumes wheat.
 

anciendaze

Senior Member
Messages
1,841
I've seen such a case, (though not in any professional capacity.) The individual definitely has severe gluten sensitivity. This was demonstrated when the kitchen in a restaurant made an error about a meal which was supposed to be gluten-free. She ate the meal with evident enthusiasm, then brought it up within a few minutes. (If I had that problem, I would be very careful about eating in restaurants.)

Unfortunately, the years it took to correctly identify the problem, and the resulting psychological disturbances, produced much the same effect as long-term hallucinogen abuse. Even after the problem was identified there were serious difficulties with interpersonal relations, and even paranoid reasoning. It could be a textbook example of false attribution of causes. It is hard enough to sort things out when you have a brain that works well. It is also hard to develop much empathy when you have constant evidence that what goes on in your mind is markedly different from what goes on in others.

When she limited her diet to a particular kind of rice, said to be especially healthy, she never considered that this might also expose her to other dietary problems. When tests showed arsenic in her body she accused people of deliberately poisoning her. The discovery that exactly this kind of rice had high levels of arsenic came years later.

If you let this go on for years, the patient will have serious psychological disturbances. If it starts before an adult personality forms, you can expect a personality disorder.

I hesitate to use the term "autoimmune" here because that tends to be limited to patients with demonstrated autoantibodies. This may be "autoinflammatory" or it may be a response to environmental antigens that simply don't cause any response in others -- inflammatory, but not auto.

We very badly need to understand what the immune system is doing in these cases, and develop interventions which can prevent the devastation of any long-term problem with disabling psychological manifestations.