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Celiac.com 10/29/2021 - Ron Hoggan's book Dangerous Grains has been an enormous help toward understanding something bizarre that happened to my 19 year old son, Lee, in the past year. Lee suddenly began acting psychotic one day last October and eventually had what appeared to be some kind of seizure. He lay on the couch, tensed up, and started shaking violently. His eyes were rolling back into his head and he was vocalizing loudly. After a period of time he came out of it and was somewhat lucid but seemed dazed, and very confused. We took him to the emergency room where he underwent a battery of tests that revealed nothing out of the ordinary. During the wait, he had two more of the seizure-like episodes. A psychiatrist was phoned and he was given neuroleptic drugs. He went to the epilepsy ward for further testing -EEG, CT scans and MRI's that did not reveal anything obviously wrong. Fortunately, we were able to stay with him. On the morning of the second day he seemed better and we talked while he ate breakfast. Thirty minutes later he was having an episode- again shaking and vocalizing, and after a couple of hours started to come out of it. We noticed this pattern- eating, followed shortly afterward by seizure-like episodes and psychosis which gradually cleared enough to converse. I started to notice what he was eating and the common denominator was wheat. I gave him some rice and vegetables from home and there was no reaction, but bagels, bread, muffins and gravy all seemed to bring about the same violent reaction. I have food allergies and am aware that wheat is a common allergen (I learned to avoid it years ago), but I couldn't understand how he could be affected in such an extreme manner, so quickly after eating. He was moved to a locked psychiatric ward, diagnosed with possible bipolar disorder or non-specific schizophrenia, and the neuroleptics were continued. Of course, his psychiatrist didn't want to hear about my observations regarding Lee's apparent reaction to wheat. (My wife and daughter also witnessed it on several occasions.) I told the psychiatrist that Lee hadn't been having any mental changes lately but had been complaining about digestive problems and I requested a biopsy to confirm celiac disease. It was promptly denied, but I was able to get the hospital dietitian to put him on a gluten-free diet (unknown to the psychiatrist who rarely saw him, but was happy to prescribe ever increasing doses of neuroleptics). The seizures stopped the very next day- the staff no doubt assumed the drugs were having an effect in spite of my revelation about the gluten-free diet. Over the next several weeks Lee became more psychotic and suffered terrible side-effects from the drugs. The county brought him to court and had him committed. He was ordered to continue the neuroleptics, and there seemed to be little we could do. Eventually he was sent to a halfway house, but a couple of weeks after arriving he started to become catatonic. (I had told the staff about the wheat reaction but they were unable to provide a gluten-free diet). We took him to the emergency room where we learned that he was extremely dehydrated. He had lost the urge to eat or drink and was becoming very psychotic. The hospital was full, so he was sent to a sister hospital. By the time the ambulance arrived, he was completely catatonic - unable to speak and incontinent. At the new hospital, he had a new psychiatrist. She was alarmed at the dosages of drugs he was receiving and felt he was probably experiencing the beginning of ‘neuroleptic malignant syndrome,' a potentially fatal reaction to neuroleptics. The drugs were discontinued but he remained catatonic and was given Electro Convulsive Treatment several times a week. (I also spoke with the dietician when he was admitted and had Lee placed on a gluten-free diet - which was halfheartedly followed). After a few ECT treatments (and a mostly gluten-free diet) he started to come out of it. His new doctor began to realize that he didn't seem to have any mental illness at all (now that the neuroleptics had been discontinued, the catatonia was lifting and diet was improving) and called in several specialists for a more thorough evaluation. I told her about the reaction to wheat but she refused to believe there could be a connection. Finally, another neurologist was brought in and he had the insight to give him a gliadan antibody test and found that he was extremely reactive. He was finally "officially" put on a gluten-free diet (we had been bringing him food from home and doing everything we could behind the scenes to keep gluten from him). He continued to improve, in spite of the side effects of the ECT. His psychiatrist couldn't really understand what was going on with him but began to trust us enough to release him, drug-free, into our care. Three months after the ordeal began, he finally came home and is clearer now than he's been in years. He's always been kind of quiet and we realize now that gluten has probably been affecting him for years. He has done an excellent job of following the gluten-free diet, is working full time, and starts college in a few weeks. Shortly after he came home, my mother came across Dangerous Grains and bought it for me. It all finally makes sense and I plan to send copies to Lee's psychiatrist and neurologist. We saw countless people in the locked psychiatric wards who were suffering and, with the exception of the chemical dependencies everyone was on some type of drug or drugs. Many were receiving ECT on a routine basis. I know my son is not unique - testing and gluten-free diets could save many of these poor souls from a lifetime of drugs and suffering. I want to do everything I can to increase the knowledge of these professionals and Dangerous Grains seems the perfect vehicle. So great thanks to Ron Hoggan (and Dr. Braly and the rest) for doing what you're doing. I know it's only a matter of time before the people that control the mental health system become enlightened enough to stop doing harm and truly begin to heal these patients. It was a close call for us and I realize Lee is a living example.

Celiac.com 05/16/2017 - A number of studies have indicated that kids with celiac disease face an increased risk for mood disorders, anxiety and behavioral disorders, ADHD, ASD, and intellectual disability. A new study by a team of researchers in Sweden puts it more precisely. They put the increased risk for psychiatric disorders in children with celiac disease at 1.4-fold over kids without celiac disease. The research team assessed the risk of any type of childhood psychiatric disorders, including psychosis, mood, anxiety, and eating disorders, psychoactive substance misuse, behavioral disorder, ADHD, ASD, and intellectual disability, in children aged 18 and younger, along with their siblings. The researchers included Agnieszka Butwicka, MD, PhD, of the department of medical epidemiology and biostatistics, Karolinska Institute, Stockholm, Sweden, and colleagues. For each of the 10,903 children with celiac disease, the research team randomly selected 100 non-celiacs from the general population. These control subjects were then matched by gender and year and country of birth. For each of the 12,710 siblings of celiac disease subjects, the research team randomly assigned 100 healthy control siblings from the general population. These were also matched by gender, year and country of birth of both siblings. Both sets of siblings were required to be free of celiac disease to age 19. The researchers reviewed histological data on patients who showed villous atrophy in small intestine biopsy specimens between 1969 and 2008, and equated villous atrophy with celiac disease. In the main cohort study, the researchers estimated the risk for any psychiatric disease, as well as specific psychiatric disorders (ie, mood, anxiety, eating, and behavioral disorders, as well as neuropsychiatric disorders such as attention deficit hyperactivity disorder (ADHD), autistic spectrum disorders (ASD), and intellectual disability) in children with celiac disease, compared with general population controls. They used sibling analyses to assess whether underlying familiar factors could account for the associations. As a comparing factor, they compared the risk for psychiatric disorders in the siblings against the risk in siblings of the general population. The team conducted both univariate and multivariate analyses, adjusting for maternal/paternal age at the child's birth, maternal/paternal country of birth, level of education of highest-educated parent, and the child's gestational age, birthweight, Apgar score, and history of psychiatric disorders prior to recruitment. During follow-up, 7.7% of children were diagnosed with a psychiatric disorder. A positive association was found in the first univariate analysis between celiac disease and any psychiatric disorder, which remained even after the researchers adjusted for maternal/paternal age at childbirth and country of birth, parental education level, and child's gestational age, birthweight, Apgar score, and previous history of psychiatric disorders. The overall prevalence of psychiatric disease in the entire sample celiac disease patients was about 7%. That number remained steady in the 10 years after biopsy. However, once the researchers analyzed the findings by cohort, they found that rates of psychiatric disorders had actually increased 8-fold over that 10-year period. The siblings of celiac disease patients showed no increased risk for any psychiatric disorder. The study showed that psychiatric disorders "may precede a diagnosis of celiac disease in children." The research team called this finding "important." They write that their study also offers "insight into psychiatric comorbidities in childhood celiac disease over time." The study showed that children with celiac disease definitely faced an elevated risk for specific psychiatric disorders, including mood disorders, anxiety disorders, eating disorders, behavioral disorders, ADHD, ASD, and intellectual disability. Although the study showed that patients with celiac disease are more likely to have prior psychiatric disorders, the team notes that they have yet to determine "the mechanisms underlying the association between celiac disease and psychiatric orders." The fact that the siblings of celiac disease patients showed no increased risk of psychiatric disorders indicates that these may be an "effect of celiac disease per se rather than common genetic or within-family environmental factors," the researchers add. The researchers conclude that their study "underscores the importance of both mental health surveillance in children with celiac disease and a medical workup in children with psychiatric symptoms." This study offers yet another piece in the complex puzzle that is celiac disease. It emphasizes the need for doctors and parents to remain on the lookout for potential psychiatric issues when dealing with children who have celiac disease. Source: Psychiatry Advisor

Celiac.com 01/10/2022 - People with celiac disease technically suffer from a T cell-mediated, tissue-specific autoimmune disease, which affects genetically susceptible individuals who eat certain proteins contained in wheat, rye, or barley. A team of researchers recently set out to show the various neurological and psychiatric symptoms in celiac disease. The research team included Giovanna Campagna, Mirko Pesce, Raffaella Tatangelo, Alessia Rizzuto, Irene La Fratta, and Alfredo Grilli. They are affiliated with the Medicine and Health Science School, Università “G. d’Annunzio”, in Chieti, Italy. Individual patient genetics, environmental factors, and different immune systems, together with auto-antigens, all factor into the pathogenesis of celiac disease. The pathogenesis of celiac disease is connected with immune dysregulation, which involves the gastrointestinal system, and the extra-intestinal systems such as the nervous system, whose neurological symptoms are evidenced in celiac patients. A gluten-free diet (GFD) could help celiac patients to avoid cerebellar ataxia, epilepsy, neuropathies, migraine and mild cognitive impairment. Moreover, celiac patients on a gluten-free diet have fewer symptoms and psychiatric co-morbidities than untreated celiac patients, including depression, apathy, anxiety, irritability and schizophrenia, which are common in untreated celiac patients. A number of studies show a reduction in psychiatric symptoms in patients who start a gluten-free diet. The research team offers a review and discussion of the state of the art regarding neurological and psychiatric complications in celiac disease. In addition to highlighting data that suggest a gluten-free diet can help to reduce neurological and psychiatric complications. The researchers conclude: This is neither the first nor the last study to support the idea that a gluten-free diet can help people with celiac disease to reduce neurological and psychiatric complications. Stay tuned for more on this and related stories. Read more at Cambridge University Press

Celiac.com 10/08/2021 - I live near Montréal, in Québec country and I’m webmaster of a new French web site called SOSGLUTEN.CA devoted to gluten sensitivity. The first time I saw the word “gluten” was in year 2000. At that moment my wife, Danielle, was very sick and while she was waiting for a diagnosis from her doctor, I discovered an ailment called “celiac disease” on the Web. That was my first meeting with the word “gluten”. When she went to the doctor to finally receive what is, effectively, a diagnosis of celiac disease, she had already been on a gluten-free diet for three weeks, based on my own findings. After that, I continued to read, read, and read again, anything on the web concerning celiac disease and gluten sensitivity. In 2002 when my youngest daughter, Manon, received a diagnosis of anxiety and depression, I requested a blood screening for celiac disease. As you may have expected, the doctor initially refused. It was only after my insistence that he finally ran these tests. From this, Manon received a diagnosis of celiac disease and she stopped having to take Paxil after six gluten-free months. In 2003, I helped a sister of my wife, Suzanne, to understand that gluten might be behind her skin disease and other health problems. She finally received a diagnosis of dermatitis herpetiformis and celiac disease after seeking a second medical opinion. In 2004, I also helped another sister of my wife, Noelline, to understand that gluten might also be behind her bone pain, joint pain and many other health problems. Despite two negative blood tests and two negative biopsies, she started a gluten-free diet and it turned out to be the best decision of her life. Moore recently, in 2005, I requested, for me and my son Eric, the opinion of Dr. Kenneth Fine via Enterolab. My son, a young engineer of 25 years old had joint finger pain and he was always a little bit depressive. I frequently had esophageal reflux, indigestion with chest pain, and insomnia since I was three or four years old (I’m  now 53 years old). The diagnosis from Dr. Fine was a diagnosis of gluten sensitivity for my son Eric with a copy of HLA DQ2 gene (from his mother) and for me a diagnosis of gluten sensitivity with only gluten sensitive genes. Today, we are all on a gluten-free diet and have been since Christmas 2005, and all symptoms have disappeared for Eric and me. As you can understand, avoiding gluten is in the center of our lives, and that is the reason I have decided to create a French web site devoted to celiac disease and gluten intolerance. I now have personal proof that gluten intolerance is not limited to celiac disease. To conclude, the main goal of this article is to share my family’s experiences with you, and to ask you to visit my web site at: https://www.sosgluten.ca. 

Celiac.com 02/15/2021 - A number of studies have tied celiac disease to psychiatric disorders, but there is still not much good data to support the connection. To get a better picture of the issue, a team of researchers recently set out to describe the epidemiology of several psychiatric disorders in celiac disease. The research team included Motasem Alkhayyat, Thabet Qapaja, Manik Aggarwal, Ashraf Almomani, Mohammad Abureesh, Omaymah Al‐otoom, Mohammad Zmaili, Emad Mansoor, and Mohannad Abou Saleh. They are variously affiliated with the Department of Gastroenterology, Hepatology, and Nutrition, Cleveland Clinic Foundation, Cleveland, Ohio; the Department of Internal Medicine, Cleveland Clinic Foundation, Cleveland, Ohio; the Department of Gastroenterology, University Hospitals Cleveland Medical Center, Cleveland, Ohio; the Department of Internal Medicine, University Hospitals Cleveland Medical Center, Cleveland, Ohio; University of Jordan Medical School, University of Jordan, Amman, Jordan; and Department of Internal Medicine, Staten Island University Hospital, New York City, New York. For their study, the team used a multi‐center database, called Explorys Inc, which offers electronic health record data from 26 major integrated healthcare systems consisting of 360 hospitals in the US. Of the 3,746,581 patients in the database between 2016‐2020, there were 112,340 patients with celiac disease. The team identified a group with celiac disease using the Systematized Nomenclature Of Medicine ‐ Clinical Terms (SNOMED–CT). They then conducted multivariate analysis using SPSS version 25. Compared to patients with no history of celiac disease, celiac patients were more likely to have a history of anxiety, depression, bipolar, ADHD, eating disorder, and autistic disorder. Patients with celiac disease and psychiatric conditions were more likely to be smokers, and to have a history of alcohol and substance abuse , along with a history of personality disorder. This large database study shows that celiac patients have a higher risk of having multiple psychiatric diseases including anxiety, depression, bipolar, ADHD, eating disorder, and autism. The team advises clinicians to keep mental health in mind when treating celiac patients, and to make psychiatric referrals as needed. Read more in Gastroenterology

Celiac.com 04/10/2018 - Celiac disease is a multi-system disorder with manifestations that may result in psychiatric disorders. Does that mean that celiac disease patients are more likely to take psychotropic drugs than other gastrointestinal patients? A team of researchers recently set out to assess the prevalence of medication use to treat psychiatric disorders in celiac disease patients compared to other gastrointestinal patients. The research team included Haley M. Zylberberg, Jonas F. Ludvigsson, Peter H. R. Green, and Benjamin Lebwohl. They are variously affiliated with the Division of Digestive and Liver Diseases, Department of Medicine, Columbia University College of Physicians and Surgeons, New York, USA; the Department of Medical Epidemiology and Biostatistics, Karolinska University Hospital and Karolinska Institute, Stockholm, Sweden; the Department of Pediatrics, Örebro University Hospital, Örebro, Sweden; the Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, USA; and with the Celiac Disease Center at Columbia University in New York, NY, USA. For their cross-sectional study, the team compiled data on patients undergoing esophago-gastroduodenoscopy over 9-years at a celiac disease referral center. They then compared rates of psychotropic medication use among 1,293 celiac disease patients to a control group of 1,401 patients with abdominal pain or reflux. Average patient age was 48.4 years, nearly 70% were female, and 22.7% used some sort of psychotropic medication. Overall, the team found no difference between rates of psychotropic medication use among celiac disease patients compared to control subjects. However, they did find that people with celiac disease were more likely to use antidepressants. This was confirmed using both univariate and multivariate analysis. Psychotropic medication use was not connected with either the duration or mode of presentation of celiac disease. So, even though the data show that celiac disease patients may use more antidepressants, they use psychotropic medications at similar rates as those with other gastrointestinal diseases. From these data, the study team suggests that researchers should try to assess whether people with celiac disease suffer from mood disorders that are not treated with medications. Source: BMC Psychiatry. 2018; 18: 76. Published online 2018 Mar 27. doi:  10.1186/s12888-018-1668-0