Nightmares on Gluten Street

Nightmares on Gluten Street

Nightmares on Gluten Street

Neurological abnormalities due to gluten have been well reported in coeliac disease patients. However, there are some disturbing reports emerging of severe mental disturbances and psychosis developing as a result of eating gluten. I came across the first case report in 2014 and a further two cases in 2015. Of concern is that it was the patients themselves, their carers, or in one instance an extremely comprehensive extended medical investigation that identified this link. More concerning is that some patients had been diagnosed with psychiatric conditions and were destined for a lifetime of antipsychotic medications and possibly being institutionalised. I can’t help but wonder how many other people are out there on psychiatric medications struggling to cope on a daily basis. The problem is not in their head; it is in their gut! Sometimes you just need a doctor willing to look beyond the diagnosis to the real cause.

We have known for some time that gluten can cause neurological issues, especially in schizophrenia. A study in the British Medical Journal in 1986 looked at 24 psychotic patients in a secure psychiatric ward. They were studied for 14 weeks while on a gluten free diet. There were beneficial changes in the whole group of patients between pre-trial and gluten-free period. Two patients who improved during the gluten-free period, relapsed when the gluten diet was reintroduced.

Here I present 3 case studies where gluten has been implicated as a contributing factor in psychotic disorders. I have provided full text links to all three case studies, the links are in the title of the article.

Case 1 – Gluten Sensitivity Presenting as a Neuropsychiatric Disorder

This is a case report of a woman that experienced severe hallucinations and psychotic episodes since childhood.

  • Mother described her as a “colicky” baby, but otherwise healthy
  • Around 4 or 5 years old she began to experience recurrent gastrointestinal symptoms
  • At the same time, she began to experience auditory and visual hallucinations – She would “see beings and, at times entire scenes, that no one else would see”. “The patient relates that these hallucinations were indistinguishable from reality, and at times she would physically reach out to touch the different characters without realizing they were not real.”
  • The patient describes relying fairly heavily on these imaginary characters for companionship as a child and claims that they inhibited her ability to form friendships with other children. As she grew older, she also found these hallucinations quite distracting rendering her unable to concentrate adequately at school or to study for exams
  • After disclosing her abdominal symptoms, she was diagnosed by a physician with irritable bowel syndrome and was started on a daily regimen of high dose psyllium
  • On her own initiative, she began to experiment with elimination diets. She progressively eliminated soy, corn, and dairy but reported no change in any of her symptoms
  • At university she met a young man and became romantically involved – “relapsing hallucinations took a toll on their relationship as she was, at times, affected to the point of not recognizing her boyfriend.”
  • After attending nutrition lectures with her partner, the patient was introduced to the idea of gluten sensitivity and decided to abstain from gluten exposure – “After eliminating gluten in September 2009, her gastrointestinal symptoms and hallucinations completely abated, and she felt an improvement in her ability to concentrate at school. She describes being able to sit down with sustained focus on study for the first time in her life, leading to the completion of her biology degree and the obtainment of employment.”
  • She chose to remain completely gluten free. Despite her efforts, however, she occasionally experienced inadvertent [trace] gluten exposures, which triggered a clear reproduction of her previous symptoms including vivid hallucinations and severe abdominal pain.” During these episodes she was sometimes with her partner, who noted she became completely disoriented and did not recognize familiar surroundings. For example, 3 hours after unintentionally eating gluten-containing oatmeal, she began to see “aliens” in the computer screens at work and believed they had restrained a teddy bear in some of the computer cords. She unplugged many of the apparatuses in the office in an attempt to rescue the stuffed animal. When her partner arrived to pick her up from work, she did not recognize him at all and was very confused about how he had a key to her apartment.” The symptoms began to abate after 24 hours and completely resolved within 2-3 days
  • When re-exposed to gluten, relapse consistently occurred within 3 – 5 hours and would result in significant disorientation and departure from reality. The episodes spontaneously resolved within 48 – 72 hours as long as she maintained a gluten-free diet
  • Since May 2012, she has had no further exposure to gluten and has remained symptom free with no gastrointestinal or neurological complaints

Pathology testing

  • Her anti-tissue transglutaminase (ATTG) antibodies on a regular diet containing gluten were negative. She did not have testing for anti-gliadin antibodies, IgE antibodies directed against wheat proteins, anti-endomysial antibodies (EMA), or anddeamidatedgliadin, and she did not have an open or double-blind placebo-controlled challenge
  • An intestinal biopsy was also not performed
  • From an investigation perspective, the patient declined to have a complete workup for celiac disease, feeling that she was well as long as she maintained a gluten-free diet and that there was no further need for investigations

Case 2 – Gluten Psychosis: Confirmation of a New Clinical Entity

This case study reviews a 14-year-old girl with psychotic symptoms apparently associated with gluten.

  • 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 behaviour 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
  • She was referred to a neuropsychiatric outpatient clinic, where a conversion somatic disorder was diagnosed and a benzodiazepine treatment was initiated
  • In June 2012, during the final school examinations, psychiatric symptoms, occurring sporadically in the previous two months, worsened. She began to have complex hallucinations
  • The types of these hallucinations varied and were reported as indistinguishable from reality – “she saw people coming off the television to follow and scare her”
  • 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

Pathology Testing

  • Routine blood tests were normal
  • In order to exclude an organic neuropsychiatric cause of psychosis an extensive panel of tests were performed, including anti-transglutaminase IgA (tTG), anti-endomysium (EMA), and anti-gliadin IgA (AGA) antibodies), and screening for infectious and metabolic diseases. All tests were within normal range EXCEPT for thyroid antibodies, anti-thyroglobulin and thyroperoxidase antibodies
  • An electroencephalogram (EEG) showed mild nonspecific abnormalities and slow-wave activity

Due to the abnormal autoimmune parameters and the recurrence of psychotic symptoms, autoimmune encephalitis was suspected, and steroid treatment was initiated. Steroid treatment led to partial clinical improvement, with persistence of negative symptoms, such as emotional apathy, poverty of speech, social withdrawal and self-neglect. Her mother recalled that she did not return a “normal girl”.

  • In September 2012, shortly after eating pasta, she presented crying spells, relevant confusion, ataxia, severe anxiety and paranoid delirium
  • She was referred to the psychiatric unit where a relapse of autoimmune encephalitis was suspected and treatment with steroid and immunoglobulins was started
  • In the following months she continued to have psychotic episodes

Further laboratory testing only showed mild anaemia and slightly raised calprotectin (a gastrointestinal inflammatory marker) levels.

  • fluctuating psychotic disorder was suspected. Treatment with a second-generation anti-psychotic (i.e., olanzapine) was started, but psychotic symptoms persisted
  • In November 2013, due to gastro-intestinal symptoms and further weight loss, a nutritionist was consulted, and a gluten-free diet 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 gluten free diet was continued for four months
  • 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

Concluding remarks from the authors:

“Until a few years ago, the spectrum of gluten-related disorders included only [coeliac disease] CD and wheat allergy, therefore our patient would be turned back home as a “psychotic patient” and receive lifelong treatment with anti-psychotic drugs.”

Case 3 – Improvement in Psychotic Symptoms After a Gluten-Free Diet in a Boy With Complex Autoimmune Illness

An 8-year old boy initially presented with auditory and visual hallucinations, but was able to function adequately

  • At age 15, he developed a depressed mood, started talking to himself, and became socially withdrawn, and his academic performance declined.
  • He was hospitalized and diagnosed as having major depressive disorder with psychotic features
  • MRI and EEG showed no abnormalities.
  • Treatment with escitalopram (antidepressant) and aripiprazole (anti-psychotic) had little effect.
  • He was readmitted to hospital a number of times with the same diagnosis
  • At age 16, he developed visual and auditory hallucinations with homicidal ideations. He cut himself superficially following the command of voice hallucinations, and he was hospitalised again, with the diagnosis changed to schizophrenia, paranoid type
  • he was treated with venlafaxine (anti-depressant) and risperidone anti-psychotic)

During the same admission, a blood test showed the presence of antinuclear antibodies (ANAs), but the patient had no symptoms of any autoimmune disease. In the meantime, he was also receiving clindamycin/benzoyl peroxide and adapaline gels and minocycline for acne and fluticasone nasal spray and albuterol for asthma.

An allergy to gluten was demonstrated that showed only IgE anti-gluten antibodies. His parents reported that he developed an allergy to peanuts and soy at about the same time.

Gluten was removed from his diet at the suggestion of the mother, a licensed dietitian. After the dietary change, the intensity of his auditory hallucinations declined dramatically and the violent element diminished, and he was discharged after 9 weeks.

During the next 2 years, he remained on a gluten-free diet, which he and his family associated with the disappearance of his psychotic symptoms. Eventually the risperidone was discontinued completely. He was able to return to school, where his academic performance was normal and he joined several athletic teams.

Concluding Remarks

These are isolated reports and indeed it may only be the tip of the “iceberg”. It should be noted that:

  • Routine testing for coeliac disease was normal for these patients
  • There were other factors that suggested gluten may be a problem, gastrointestinal symptoms and mild changes in laboratory pathology values
  • I always want to see pathology results as I see so many where patients have been told that their test results are all “normal” when clearly they are not
  • Doctors are scrutinised as to the number of pathology tests they order; therefore, they are reluctant to do additional testing that may help identify the cause or eliminate a possible underlying cause. Unfortunately, that does mean that sometimes the patient needs to pay for the cost of the test
  • In two of these three cases, it was on the patients or parents own initiative that a gluten free diet was initiated
  • In the third case a gluten free diet was initiated only to try and alleviate gastrointestinal symptoms
  • Some individuals can be extremely sensitive to even trace amounts of gluten, therefore removing 99.9% of gluten may not be enough. I often hear parents say “we are mostly gluten free and haven’t seen any difference”. No gluten free means 100% free of gluten! Otherwise you are wasting time, money and more importantly seeing no benefit
  • These patients could communicate what they were experiencing. What about those patients that cannot express what they are feeling due to poor expressive language skills?
  • Of note is that most patients have some degree of gastrointestinal involvement
  • Individuals on the autism spectrum often have gastrointestinal issues. If gastrointestinal issues predispose to neurological abnormalities, then maybe some of the symptoms that a subset of ASD individuals are exhibiting is due to gluten. This is why they improve on a gluten free diet
  • I have seen children that are extremely sensitive to gluten, they will regress with trace amounts that they may inadvertently consume. I have also seen children that appear fine with the introduction of gluten (after being gluten free), and this can only be a sandwich at lunchtime, however they regress so slowly with time that it barely noticeable. After three months, parents (and the practitioner) are scratching their heads – what has happened to this child! Resumption of a strict gluten free diet, and they slowly recover, but the recovery may take months. BUT they do recover

Adults have a choice whether they follow a gluten free (or any other) diet. Children don’t have that option; they eat what they are given. “But they refused to eat the gluten free options I made, so I had to give them something!” The only reason a preferred food containing gluten is given if they don’t eat, is because it is in the house. If it is NOT in the house, then there is just no other option. This has to be done in a calm “matter of fact” manner by the parents. That is for another time and an interesting documentary on a clinic in Switzerland that specialises in feeding disorders.

The documentary was on a young Australian girl, tube fed for years due to abdominal surgery. When it was time to remove the feeding tube she refused to eat or drink anything orally. Particularly interesting as they diagnosed her as being on the spectrum. They got results after no one in Australia could help this poor girl. However they took a no nonsense approach to help this girl.

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