Celiac disease can be tricky. It often presents with a wide variety of disparate symptoms, many of them not seeming to be a gut problem at all. People with celiac frequently spend many years suffering before finding a proper diagnosis.
“Celiac disease can be difficult to diagnose because it affects people differently. There are about 300 known symptoms which may occur in the digestive system or other parts of the body. Some people with celiac disease have no symptoms at all. However, all people with celiac disease are still at risk for long-term complications, whether or not they display any symptoms.”
– The Celiac Disease Foundation (2015-a)
The most common celiac symptoms found in children are digestive (Celiac Disease Foundation, 2015-a):
- abdominal bloating and pain
- chronic diarrhea
- pale, foul-smelling, or fatty stool
- weight loss
- irritability and behavioral issues
- dental enamel defects of the permanent teeth
- delayed growth and puberty
- short stature
- failure to thrive
- Attention Deficit Hyperactivity Disorder (ADHD)
Celiac in adults is less likely to present as digestive problems – only a third have frequent bouts of diarrhea but may experience these symptoms instead (Celiac Disease Foundation, 2015-a):
unexplained iron-deficiency anemia
bone or joint pain
bone loss or osteoporosis
depression or anxiety
tingling numbness in the hands and feet
seizures or migraines
missed menstrual periods
infertility or recurrent miscarriage
canker sores inside the mouth
an itchy skin rash called dermatitis herpetiformis
For the 300 possible symptoms associated with celiac disease, see this list from the University of Chicago’s Celiac Disease Center.
CELIAC IS AN AUTOIMMUNE DISEASE
Celiac is one among the 100 or so recognized autoimmune diseases. This is important to note because we now know that the various autoimmune diseases can get expressed in people with a genetic predisposition for them – but expression can be prevented by building a robust immune system in the gut microbiome. (Hardin, 2014)
It’s also important to note that chronic autoimmune diseases in general are occurring in ever-increasingly numbers. At best, they are a nuisance (eg, acne and psoriasis). At worst they are life-threatening (eg, type I diabetes, lupus, MS, rheumatic Fever). (American Autoimmune Related Diseases Association, 2015).
In celiac disease, ingesting gluten damages the small intestine, creating serious long-term health complications. Celiac is estimated to affect 1 in 100 people worldwide, many of them undiagnosed and/or misdiagnosed and undergoing incorrect treatments – even unneeded major surgeries.
Gluten is a protein found in wheat and some other grains – and a common ingredient in most of the processed foods many people rely on as their diet. When gluten is consumed by a person with celiac disease, an autoimmune response begins that attacks the villi in the small intestine, damaging them with severe inflammation. The villi are finger-like projections lining the small intestine that promote nutrient absorption. Damage to them means nutrients aren’t properly absorbed into the body.
Damage to the villi allows gluten proteins to leak through the intestinal barrier, producing a condition called ‘leaky gut’ which is associated with autoimmune conditions/diseases in general.
The good news is that improving the health of your gut microbiome can keep a genetic predisposition for celiac disease (or any of the other autoimmune diseases) from expressing itself in your body. And, of course, avoid gluten.
It is estimated that approximately 2.5 million Americans have undiagnosed celiac disease and are at risk for serious life-long health complications. (Celiac Disease Foundation, 2015-b)
SCREENING TESTS FOR CELIAC DISEASE
There are several easy tests for celiac disease. the following information is from the Celiac Disease Foundation (2015-c):
A simple blood test is available to screen for celiac disease antibodies. People with celiac disease who eat gluten have higher than normal levels of these antibodies in their blood. You must be on a gluten-containing diet for antibody (blood) testing to be accurate.
The First Step: tTG-IgA Test
There are many screening blood tests for celiac disease but the most sensitive and commonly used, whether symptoms are present or not, is the tTG-IgA test.
Tissue Transglutaminase Antibodies (tTG-IgA)
TG-IgA test will be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. This is called the test’s sensitivity. The same test will come back negative in about 95% of healthy people without celiac disease. This is called the test’s specificity. There is a risk of a false positive especially for people with associated autoimmune disorders like Type 1 diabetes, chronic liver disease, Hashimoto’s thyroiditis, psoriatic or rheumatoid arthritis and heart failure, who do not have celiac disease.
There are other antibody tests available to double-check for potential false positives or false negatives.
- IgA Endomysial antibody (EMA): The EMA test has a specificity of almost 100%, but is not as sensitive as the tTG-IgA test. About 5-10% of people with celiac disease do not have a positive EMA test. It is also very expensive in comparison to the tTG-IgA and requires the use of primate esophagus or human umbilical cord. It is usually reserved for difficult to diagnose patients.
- Total serum IgA: This test is used to check for IgA deficiency, a harmless condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result. If you are IgA deficient, your doctor can order a DGP or tTG-IgG test.
- Deaminated gliadin peptide (DGP IgA and IgG): This test can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies.
While it is very rare, it is possible for someone with celiac disease to have negative antibody test results. If your tests were negative, but you continue to experience symptoms, consult your physician and undergo further medical evaluation.
CELIAC SCREENING & POLICIES IN OTHER COUNTRIES
Unlike the US, the countries listed below have official government policies protecting people with celiac disease and those who must eat a gluten-free diet. Some even have mandatory celiac screening programs. The US has none of these.
The information below is from the Celiac Disease Foundation (2015-d):
Argentina recently implemented its “National Program for the Detection and Control of Celiac Disease.” The program not only promotes awareness and knowledge regarding celiac disease, it also implemented an impressive array of labeling restrictions and created a national logo for all certified-GF packaged foods. For residents, Argentinian health care providers must cover the cost of alternative flours and gluten-free mixes.
Australia and New Zealand
Australia and New Zealand have the toughest labeling laws in the world; these have been set by the Australia New Zealand Food Standard’s Code and apply to all food sold or prepared for sale, including imported food. The Australia New Zealand Food Standards Code require the following:
- Foods labeled as “gluten free” must not contain any detectable gluten; and no oats or their products; or cereals containing gluten that have used malt or their products.
- Ingredients derived from gluten containing grains must be declared on the food label, however small the amount.
- Foods labeled as “low gluten” must contain less than 200 parts per million of gluten. Australia does not have a very large range of low gluten foods and be aware low gluten foods are not recommended for a gluten free diet.
Canada has labeling restrictions on all packaged gluten-free foods. All foods considered certified gluten-free by Health Canada must contain under 20 parts per million of gluten. Any intentionally added gluten-containing ingredient must be listed on a product. In addition, Canadian residents receive tax deductions for the extra cost of gluten free foods versus their non-gluten free counterparts.
The European Union has adopted universal labeling laws for gluten free food. If the food contains less than 100 mg/kg, it may be labeled “very low gluten” while if it contains less than 20 mg/kg it may be labeled “gluten free.”
Irish citizens may claim tax deductions for the extra cost of gluten free foods versus their non-gluten free counterparts. Ireland used to have a program that entitled some celiacs to specific gluten-free foods free of charge. However, the program has been discontinued.
All Italians are tested for celiac disease at an early age (by 6). Each Italian citizen over the age of 10 with celiac disease receives a monthly stipend of 140 euros, which can be spent on specific gluten-free foods (regulated by the Ministry of Health). Italians with celiac disease also receive extra vacation time to shop/prepare GF food. The Italian Celiac Association and government have done an excellent job educating restaurants on how to deal with celiac disease. There are even gluten-free meals in schools, hospitals, and all other public eating establishments.
Over 90% of British celiac patients receive gluten-free food as part of their prescription for the gluten-free diet. Essentially these patients receive gluten free food and mixes at a heavily discounted price (the cost of the prescription).
DOCUMENTARY FILM: “THE CELIAC PROJECT”
Film maker Michael W. Frolichstein is working on a highly informative documentary film about celiac to raise awareness about the disease. The film showcases the extraordinary lives of people on their long journeys to diagnosis and the obstacles celiac sufferers face trying to live gluten free lives.
Here’s a trailer for “The Celiac Project” documentary.
Frolichstein was motivated to use his skills to create this first-of-its-kind documentary about life before and after the diagnosis of celiac disease after his own 20 year struggle with unexplained health problems before finally being diagnosed in 2009. Then, a few years after his diagnosis, a blood test and endoscopy on his 3 year old daughter showed that she too had celiac.
He started talking with others with celiac and “was blown away by the unbelievable stories that I heard–so many of them worse than mine. They were hospitalized, unable to keep food down, misdiagnosed with MS (and other serious conditions), had multiple miscarriages; the list goes on and on. When I learned that 83 percent of Celiacs in this country are either undiagnosed or misdiagnosed, I felt compelled as a filmmaker to unravel the mystery of this illness. We have talked with dozens of people who struggled to get diagnosed and also interviewed the top Celiac doctors in the world and are excited to share their stories in this compelling documentary.” (Frolichstein, 2015-a)
If you wish to contribute to the film’s funding campaign or add information about your own struggles with celiac disease, go to CeliacProject.com.
A closing thought:
American Autoimmune Related Diseases Association. (2015). Autoimmune Statistics. See: http://www.aarda.org/autoimmune-information/autoimmune-statistics/
Celiac Disease Foundation. (2015-a). Celiac Disease Symptoms. See: http://celiac.org/celiac-disease/symptoms/
Celiac Disease Foundation. (2015-b). What Is Celiac Disease? See: http://celiac.org/celiac-disease/what-is-celiac-disease/
Celiac Disease Foundation. (2015-c). Screening. See: http://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/
Celiac Disease Foundation. (2015-d). Celiac Policies Around the World. See: http://celiac.org/celiac-disease/resources/celiac-policies-around-the-world/
Frolichstein, M. W. (2015-a). Kickstarter – “The Celiac Project”. See: https://www.kickstarter.com/projects/1596989314/the-celiac-project
Frolichstein, M.W. (2015-b). “The Celiac Project”. See: http://www.celiacproject.com/
Hardin, J.R. (2014). AUTOIMMUNE DISEASES: How they develop and how to put them in remission. See: http://allergiesandyourgut.com/2014/10/26/autoimmune-diseases-develop-put-remission/
University of Chicago’s Celiac Disease Center. (2015). Symptoms and conditions
potentially due to celiac disease. See: http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf
© Copyright 2015 Joan Rothchild Hardin. All Rights Reserved.
DISCLAIMER: Nothing on this site or blog is intended to provide medical advice, diagnosis or treatment.