Celiac Disease in Children
In this article, Dr. Ed Hoffenberg, MD talks about the differences seen in children with Celiac Disease at
different ages. It is unknown why some children develop celiac disease early in life and others later in life.
Symptoms also vary between children from within minutes of ingestion of gluten, to delayed symptoms
lasting sometimes as long as two weeks. With severe symptoms children are most likely to be
diagnosed: failure to thrive, weight loss and vomiting. Infants and toddlers can suffer from malnutrition
which results in low growth in height and/or weight. The tTG test is not accurate in children under 3 years
of age and any child with symptoms under this age should be seen by a pediatric gastroenterologist.
School age children usually do not vomit, but have other gastrointestinal issues like stomach aches,
bloating, diarrhea or constipation. Inability to either gain or lose weight should signal a test for celiac
Teens with celiac disease often exhibit "atypical" symptoms. Mood disorders, depression and panic
attacks may arise. Lethargy, fatigue, headaches, skin conditions (DH), stunted growth and delayed
puberty are some of the possible symptoms.
Children may also have no or mild symptoms and testing should be considered if they have other related
conditions: Type 1 diabetes, a relative with the disease, juvenile arthritis, a thyroid condition, IgA
deficiency to name a few. Anemia, weak dental enamel, elevated liver enzymes or osteopenia are all
signals that celiac disease should be tested for.

Is there gluten in your over the counter medications?
This is not new research, but I like to let people know of the only site I have found that provides a listing of
over the counter gluten-free drugs. This is a US site. It is run by a pharmacist who is also developing a
new list of drugs indicating whether there are corn, lactose, potato and soy in the drugs, in addition to
their gluten-free status. The site is

Gluten-Free Diet Does Not Repair Intestinal Damage in Some Children With Celiac Disease
Medical records of 102 children diagnosed with celiac disease were reviewed. After a year, despite
excellent adherence to a gluten-free diet for most (91%) patients, 43% experienced persistent symptoms,
27% had new gastrointestinal symptoms, and 34% had persistently elevated serology at the time of
repeat endoscopy and biopsy. Only 33% of the patients were asymptomatic at the time of repeat
endoscopy. Overall, 19% of patients showed persistent enteropathy consistent with a Marsh 3 lesion at
the repeat endoscopy. The findings demonstrate that neither the presence of symptoms nor a positive
tTG result was a reliable measure of mucosal recovery in the study population. For example, tTG was
elevated in 43% of patients with persistent enteropathy and in 32% of those with mucosal healing. In
contrast, 84% of patients with mucosal recovery on repeat biopsy were symptomatic at the time of the
repeat endoscopy, as were 55% with persistent enteropathy. Further research is required in this area.
The study included Dr. Alessio Fasano, a well-known gastroenterologist and researcher and Dr. Jocelyn
Silvester, who has been funded by the Canadian Celiac Association in the past. Published on line,
November 3, 2016 Journal of Pediatric Gastroenterology and Nutrition,
February 2017 - Volume 64 -
Issue 2 - p 286-291

New List Created by Experts May Help Prevent Food Gluten Cross-Contamination
The newly created food services checklist was compiled after an extensive literature review, input from 11
different experts with PhDs and experience with food services and/or gluten and celiac issues, along with
documents from various organizations such as the Gluten-Free Certification Program from the Canadian
Celiac Association.
The final checklist consists of 88 items divided into 12 sections, which cover everything from building and
facilities maintenance, cleaning and ventilation, to employee clothing and hygiene, to food production and
transport. The list was published in the journal Nutrients.

Celiac Disease Patients Have a Higher Risk of Pneumonia
One study, conducted in the United Kingdom, provides the most comprehensive look at the issue. The
study tracked 9,803 people with celiac disease, along with 101,755 people who didn't have the condition
for comparison purposes.
The study, which spanned 15 years, included all age groups.
Overall, the researchers identified 179 cases of pneumonia among those who had celiac disease,
compared to 1,864 cases in those people who didn't have celiac. That works out to similar odds for those
with celiac to catch pneumonia, when compared with those who didn't have the condition.
However, the researchers also identified a 28 percent increased risk of pneumonia in people younger
than age 65 who had celiac disease and who had not been vaccinated for pneumonia. This increased risk
was highest around the time of diagnosis-at that time, the risk was twice as high for any type of
infectious pneumonia and four times as high for pneumococcal pneumonia, the researchers said.
However, the risk remained elevated for more than five years following that celiac disease diagnosis.
The study concludes: "Unvaccinated patients with coeliac disease under the age of 65 have an excess
risk of community-acquired pneumonia that was not found in vaccinated patients with coeliac disease. As
only a minority of patients with coeliac disease are being vaccinated, there is a missed opportunity to
intervene to protect these patients from pneumonia."

Celiac Disease Patients Pay a Higher Economic Burden
"This study highlights the additional healthcare resource use and costs associated with celiac disease on
top of gluten-free-diet costs," said Stefano Guandalini, M.D., founder and medical director of the
University of Chicago Celiac Disease Center. "It focuses on the costs borne by insurers, as well as the
medical burden of celiac disease for patients." The study looked at the medical records of 18M patients in
the US. They identified 12,187 patients with Celiac Disease and matched them based on age, sex,
region, company and employment status. Patients with celiac disease had $12,217 total all-cause direct
costs compared with $4,935 in controls (P < .0001). Guandalini S, et al. Abstract 2. Presented
at: Digestive Disease Week, May 16-19, 2015; Washington, D.C.

Gluten Free Stakeholder 2016 Report
The Session was led and facilitated by the Canadian Celiac Association, the Allergen Control Group Inc,
and the Agriculture and Agri-Food Canada. You can read their final report regarding the September 2016

25% of Ataxia Caused by Gluten
A study in the Journal of Neurology, Neurosurgery and Psychiatry found that 25% of ataxia was caused
by gluten. A research paper lead by Dr. M Hajivassiliou published in December, 2016 concluded that
immune-mediated ataxias are common. Diagnosis of the cause is key to potential therapeutic treatments.
Ataxia is a neurological condition consisting of the loss of control of bodily movements. It includes gait

US Labelling of Gluten-Free Foods
The U.S. Food and Drug Administration (FDA) has defined the term "gluten-free" for voluntary use in the
labeling of foods. Any food product bearing a gluten-free claim labeled on or after August 5, 2014 must
meet the requirements of the agency's gluten-free labeling rule. With this uniform definition, consumers
with celiac disease can choose foods with greater confidence. The standard is no greater than 20 ppm in
products that are labelled gluten-free. This brings US labeling closer to Canada's standards. For detailed
information if you are traveling to the US.

Celiac Associated Pancreatic Disease
Dr. Hugh Freeman, a gastroenterologist affiliated with the Department of Medicine, University of British
Columbia, Vancouver, BC set out to study the prevalence of Type 1 diabetes and Celiac Disease
Prospective studies using an initial screening IgA tissue transglutaminase antibody assay (tTG) were
done at UBC and a total of 125 male and 108 female children and adolescents with type 1 diabetes
mellitus were evaluated from an established pediatric diabetes clinic. Of these, 15 male and 11 female
patients had elevated tTG titers, of whom 19 were also positive for endomysial antibodies. Among these
cases, 1 was already known to have celiac disease. Small intestinal biopsies were done in the other 18
children positive for both antibodies.
In this study, over 40% of diabetic children were asymptomatic, yet blood testing facilitated selection for a
small intestinal biopsy evaluation. 7.7% of this pediatric group had biopsy results common in celiac
disease. Dr. Freeman says that further research in this area is required to determine if these
observations can be verified by others. Annals of Gastroenterolgoy, July - September, 2016, published
on-line May 20, 2016.

Wheat Proteins Cause Inflammation Beyond the Gut
This is a study regarding ATI's (amylase-trypsin inhibitors), which are specific proteins found in wheat that
has been shown to trigger an immune response in the gut that can spread to other tissues in the body.
While ATI's only compromise 4% of the protein in wheat, they have been suggested to exacerbate
rheumatoid arthritis, multiple sclerosis, asthma, lupus, non-alcoholic fatty liver disease, IBS and other
conditions such as non-celiac gluten sensitivity (NCGS).

Rituximab Promising for Dermatitis Herpetiformis
Rituximab may be an effective treatment for recalcitrant dermatitis herpetiformis (DH), according to a
recent case study.
"DH is an autoimmune blistering disease which is commonly associated with celiac disease and can
present with debilitating pruritic blisters on extensor surfaces," explained Dr. Ron Feldman of Emory
University School of Medicine.
"The most common treatments are a gluten-free diet along with the addition of dapsone," he told Reuters
Health. "For patients who do not typically respond to these therapies, other immune-suppressing
medications have been utilized with mixed results."
"This is the first successful case of rituximab therapy used for a recalcitrant case of DH," he said by email.
"The patient had resolution of both his pruritus and skin rash. In addition, the levels of both anti-tissue and
anti-epidermal transglutaminase antibodies normalized."
The link to this article is below, you do need a login to Medscape to view it.


Carnivorous plant enzymes could help celiacs digest gluten, says U of C researcher,
CBC News by Tricia Lo, August 8, 2016
University of Calgary researchers, have made a breakthrough that could help celiac patients digest gluten with the help of an enzyme from bug-eating pitcher plants. These plants have "disposable stomachs" that are filled with an enzyme-rich liquid that helps them digest insect prey. The lead researcher is David Schriemer says that celiac patients may be able to take the extract like "beano". Full study is included in Nature at

Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of coeliac disease
Researchers including Dr. Peter Green found that there is a state of systemic immune activation in conjunction with a compromised intestinal epithelium affecting a subset of individuals who experience sensitivity to wheat in the absence of coeliac disease. In other words, NCGS is not all in their head. Much more research is required in this area.
Non- Celiac Wheat Sensitivity is Official

Jury Still Out on Celiac Disease Screening, U.S. Doctors Say
There is not enough evidence to propose widespread screening for Celiac Disease. Guidelines do recommend screening for those with a close relative with celiac disease stated Dr. Joseph Murray, Mayo Clinic, as they are at increased risk for the disease.

Neurological Dysfunction in Coeliac Disease and Non-coeliac Gluten Sensitivity
562 patients were studied: 228 or 41% had enteropathy (CD) and 59% did not (NCGS). The severity of ataxia did not differ between the two groups, although those with CD had more severe neuropathy. All patients responded to a GF diet. tTG antibodies were similar in the two groups. The researchers concluded that both groups had similar neurological issues and that there is currently a risk that if diagnosed with NCGS, the neurological issues will not be dealt with. American Journal of Gastroenteroly

Honeycomb app can be customized to user's allergies, likes and dislikes
A Vancouver Sun article talks about a local business that has developed an application on honeycomb.ai that will enable you to find restaurant menu items that will meet your allergy or in our case gluten-free needs. It is currently in Beta testing and enables you to pick by price, location and your specific needs if you have registered. There is no cost to the user as money is made from the restaurants.
h p://vancouversun.com/business/local-business/food-allergy-sensi vity-new-app-from-vancouver- developers-will-help-you-navigate-restaurant-menus

Early recognition of coeliac disease through community pharmacies: a proof of concept study
Fifteen pharmacies in UK had pharmacists administer a test for celiac disease, when customers brought forward common celiac disease symptoms. Of 554 administered the test 9.4% had CD. The study concluded that pharmacies could effectively either refer patients for testing, or be a site for testing for CD. International Journal of Clinical Pharmacology, 2016 Aug 8.

Duodenal Bacteria from Celiac Patients Has Distinct Impact on Gluten Breakdown and Immunogenicity
A research team from around the world, including Canada's Farncombe Digestive Family Centre and McMaster University, studied gluten metabolism by opportunistic pathogens and commensal duodenal bacteria, and to characterize the ability of the resulting peptides to activate gluten-specific T-cells from celiac patients. They colonized germ-free mice with bacteria isolated from the small intestine of celiac patients or healthy controls. These mice were selected by their in vitro gluten-degrading capacity. They then measured gliadin levels and proteolytic action in intestinal contents after gluten feeding. They found that the bacterial colonizations created clear gluten degradation patterns in the small intestine of the mice.
Pseudomonas aeruginosa (Psa), an opportunistic
pathogen from celiac patients, exhibited elastase activity and produced peptides that better translocated the mouse intestinal barrier. Psa-modified gluten peptides activated gluten-specific T-cells from celiac patients. In contrast, Lactobacillus spp. from the duodenum of non-celiac controls degraded gluten peptides produced by human and Psa proteases, reducing their immunogenicity. In other words, the bacteria in the gut of celiac patients impacts their immune response. This microbe-gluten-host interaction may modulate autoimmune risk in genetically susceptible persons and may underlie any connection between celiac disease and microbial imbalance or maladaptation in the digestive tract. http://www.ncbi.nlm.nih.gov/pubmed/27373514

Beyond Celiac has developed some free Back to School Kits
Back to School Toolkit
: School prep begins this month, and parents with children on a gluten-free diet have a few extra items on their back to school checklists.

Gluten-Free in College Toolkit: Prepping for college is stressful, but when you throw a gluten-free diet into the mix, things can get intimidating.
These free resources can be found at:
http://www.beyondceliac.org/community/Get-Social/Monthly-Social-Media- Happenings/1377/


Study Links Early Childhood Infections to Celiac Disease
A study in Norway of 73,000 children found that those who had 10 or more respiratory or gastrointestinal infections in the first 18 months of life were 30% more likely to develop celiac disease than those with only 5 or few infections.  The study however did not discuss a cause and effect however.  It could be that those with more infections were more actively involved in the health care system and were therefore more likely to be diagnosed.  More research is required in this area.

Correlation of Type 1 Diabetes and Thyroid and Celiac Disease Autoantibodies in Patients
A study in Saudi Arabia found the prevalence of thyroid and celiac disease autoantibodies among Type 1 diabetic patients was high.  There was no correlation between the age of Type 1 diabetes diagnosis and the level of autoantibodies.  Saudi Medical Journal 16 Apr, 37 (4):  pages 386 - 391.

Diagnosis of Celiac Disease
The authors of this study reviewed over 7,000 prior studies on PubMed, Embase, Cochrane Library and the web of science and found that the tTG IgA tests have excellent sensitivity and excellent specificity is found in the tTG IgA and EmA IgA tests.  Rockville (MD): Agency for Healthcare Research and Quality (US); 2016 Jan. Report No.: 15(16)-EHC032-EF. AHRQ Comparative Effectiveness Reviews

Presenting Pattern of Pediatric Celiac Disease
A review of 165 patient charts of children newly diagnosed as having CD in western New York, they found that patients presented most frequently with abdominal pain and constipation and were older at the time of diagnosis than those described in the classical presentation of CD (gastrointestinal issues, diarrhea, and fatigue). They speculate that these patients may have a different long-term natural history and risk factors than originally described for patients with CD. Journal of Pediatric Gastroenterology Nutrition 2016 January Pages 60-3.

Pathogenic Role of Gut Microbiota in Gastrointestinal Diseases
The gut microbiota is responsible for immune and metabolic functions.  When this microbiota is out of balance, a condition called dysbiosis, gastrointestinal issues result that can lead to irritable bowel syndrome, celiac disease, inflammatory bowel disease and other inflammatory gastrointestinal issues.  This study is looking at how genetics, diet, stress and medications can influence the gut bacteria.  See comment in PubMed Commons below Intestinal Research, 2016 April 14(2):127-38.

The Decreasing Prevalence of Severe Villous Atrophy in Dermatitis Herpetiformis: A 45-Year Experience in 393 Patients
This study looked at patients with Dermatitis Herpetiformis (DH), which is a manifestation of celiac disease presenting with itchy blistering rash and pathognomonic IgA deposits in the skin, and the degree of mucousal damage that these patients had.  Prominent gastrointestinal symptoms are rare, and small-bowel findings range from severe villous atrophy (SVA) and partial villous atrophy (PVA) to normal mucosa with inflammatory changes.  http://www.ncbi.nlm.nih.gov/pubmed/27136959

Is it gluten-free? Relationship between self-reported gluten-free diet adherence and knowledge of gluten content of foods
Patients are often unable to identify what food is gluten-free and which is not.  Therefore, self-report measures do not account for the possibility of unintentional gluten ingestion and overestimate gluten-free diet adherence. The role of patient advocacy groups and education to improve outcomes through improved adherence to a GFD requires further research.  Nutrition February 13, 2016.

Development of a Risk Score for Extraintestinal Manifestations of Coeliac Disease
This Australian study reviewed 301 patients who had symptoms other than the classic symptoms of gastrointestinal issues.  They identified other symptoms that increased the risk of having celiac disease.  These include a family history of CD, the presence of another autoimmune disorder, anemia, lactose intolerance, and depression. A risk score was developed (Coeliac Risk COMPARE) which scores individuals based on the presence or absence of these additional symptoms and provides an additional screening tool when assessing whether the patient requires follow-up testing for CD.


Features of children with positive celiac serology and type 1 diabetes mellitus
A study from the Japan Pediatric Society, identified 294 children who had celiac disease. Of these, 21 of had diagnosed type 1 diabetes mellitus. It was found that diabetic children were more likely to have absence of gastrointestinal symptoms and more likely to have reflux issues compared to children who had just celiac disease. Pediatrics International Journal 2015 Oct

Low bone mineral density in Brazilian patients at diagnosis of Celiac Disease
Low bone mineral density is considered an extra-intestinal manifestation of celiac disease with reduced bone mass, increased bone fragility, and risk of fractures. Celiac disease is considered a condition at high risk for secondary osteoporosis and the evaluation of bone density is very important in the clinical management of these patients. A study in Brazil found that 69% of Brazilian patients with celiac disease at diagnosis had low bone mineral density, being more frequent in women older than 50 years. Arq Gastroenterol 2015 Jul-Sep

CesareanSection (CS) and Diseases associated with Immune Function
A total of 750,569 children aged 0 to 14 years were included in the study. Children delivered by both acute and elective CS had an increased risk of asthma, laryngitis, and gastroenteritis. Children delivered by acute CS had an increased risk of ulcerative colitis and celiac disease, whereas children delivered by elective CS had an increased risk of lower respiratory tract infection and juvenile idiopathic arthritis. The effect of elective CS was higher than the effect of acute CS on the risk of asthma. Journal of Clinical Immunology 2015 Sep 11

Exploring the Strange New World of Non-Celiac Gluten Sensitivity
Dr. Daniel Leffler, who will speak at the CCA National Conference and Dr. Benjamin Lebwohl completed a study regarding Non-Celiac Gluten Sensitivity (NCGS) that really did not provide any conclusive results.
It seems only to contribute to the uncertainty about NCGS. But from these results and those of previous trials, it is reasonable to draw several conclusions. First, NCGS is distinct from IBS in that extraintestinal symptoms are prominent and respond to dietary modification, unlike the extra intestinal symptoms that can be seen in IBS. Indeed, half of the individual clinical components that worsened with gluten compared with placebo (aphthous stomatitis, depression, and foggy mind) related to non-intestinal symptoms, and this is certainly compatible with symptoms reported by NCGS patients in clinical practice. Second, there are no proven biomarkers for NCGS at this time, and studies focused on these have had, at best, conflicting results. "If nothing else, NCGS is a complex entity and will not give up its secrets easily. As such, studies with more limited but focused aims are likely to be more effective in providing important incremental knowledge."

Asymptomatic Children Might Not Need Biopsy for Celiac Diagnosis
Doctors might not need a biopsy to accurately diagnose celiac disease in children with no symptoms who have elevated anti-tTG, according to the latest study out of Italy. Among 196 patients with anti-tTG antibodies at least 10 times the standards, 156 had symptoms and 40 were asymptomatic. More than 90% of the symptomatic children (142/156, 91%) showed severe lesion degree on biopsy, and an even higher percentage of asymptomatic patients (37/40, 92.5%) had severe lesions. Among the EMA positive children with lower titers of anti-tTG antibodies, 70% of symptomatic children and 81% of asymptomatic children showed severe lesions. This is current research and of course it will take some time for these to filter down to our Canadian standards for care.

Mommy, I have a tummy ache!
Dr. Rodney Ford is Pediatric Gastroenterologist in New Zealand and has written seven books about gluten related issues. He feels that children's tummy aches should never be ignored. These children need help and understanding for their symptoms. Some of these children have unrecognized gastric reflux symptoms; some have celiac disease; some have Helicobacter pylori infection; some have chronic constipation; some have food intolerances; and many have gluten sensitivity/ intolerance. "Please don't just ignore them-please test and treat them! Please do not dismiss what your child is telling you: you may be able to help them. They might have a gluten-related disorder. They are not "attention seeking" they are in actual pain." Journal of Gluten Sensitivity, Autumn 2015 Issue

Are Industrial Food Additives to Blame for Soaring Rates of Autoimmune Disease?
Numerous common industrial food additives increase tight junction leakage. These include glucose, salt, emulsifiers, organic solvents, gluten, microbial transglutaminase, and nanoparticles, widely and increasingly used in industrial food production.
Researchers from Israel and Germany are calling for additional research on the connections between food additives exposure, intestinal permeability, and autoimmunity interplay to expand our knowledge of the common mechanisms associated with autoimmune progression.

Have Researchers Finally Nailed Down Non-celiac Gluten Sensitivity?
The study, from Giovanni Barbara and his team at the University of Bologna, Italy, suggests that inflammation in gluten-sensitive individuals may result from high levels of a molecule called zonulin.
Zonulin has been linked to inflammation, and people with celiac disease have been shown to have high levels of zonulin when consuming wheat protein. Symptoms include abdominal pain, bloating, alternating diarrhea or constipation. And there can be other symptoms, including "brain fog," headache, fatigue and joint and muscle pain.

Iron deficiency anemia in newly diagnosed celiac disease in children
Of all patients diagnosed with Celiac Disease in the study, 30.1% had anemia. This significant relation existing between CD and iron deficiency should be considered by pediatricians at the diagnosis of CD in order to treat the patients. Minerva Pediatrics: 2016 Feb.

Neurological Dysfunction in Coeliac Disease and Non-Coeliac Gluten Sensitivity
In a study done in the UK, the most common neurological manifestations of patients with either CD or NCGS were cerebellar ataxia, peripheral neuropathy, and encephalopathy. The neurological manifestations of CD and NCGS are similar and equally responsive to a gluten-free diet suggestive of common pathophysiological mechanisms. American Journal of Gastroenterology: 2016 Feb

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Take Part in Celiac Disease Research
Researchers at the University of Calgary are looking for North American adults to participate in a brand new online program! You are eligible if you are newly diagnosed with celiac disease or if you were diagnosed some time ago but still struggling physically or psychologically. You must have biopsy- or blood test-confirmed celiac disease to participate. Email Dr. Justine Dowd for more information celiac@ucalgary.ca . Thanks for supporting important research on celiac disease!