Signs and Symptoms of Celiac Disease
Celiac disease can present itself in many different ways. The most classic symptoms involve the digestive system itself and may include (Bower, 2007, p.7):
- Chronic diarrhea
- Weight loss
- Irritable bowel syndrome
- Abdominal distension
Excessive flatulence may also be an issue. Other symptoms that do not point to digestive difficulties, but can be signs of celiac disease, can include (Bower, 2007, p. 7):
- Short stature
- Delayed puberty
- Iron-deficiency anemia
- Recurrent fetal loss
- Persistent cold sores
- Autoimmune diseases
- Peripheral neuropathy
- Cerebellar ataxia
- Dental enamel hypoplasia
Osteoporosis may also be a symptom.
The itchy, blistering Dermatitis Herpetiformis rash on the buttocks, knees, and elbows is also a clue that the person might have an issue with gluten. Not everyone with celiac disease has dermatitis jerpetiformis (DH), but those with DH have celiac disease.
Populations at risk include those with Type 1 diabetes mellitus, first and second-degree relatives of individuals with celiac disease, individuals with Turner syndrome, and those with Downs or Williams syndromes (Bower, 2007, p. 7).
In the literature, there are many signs and symptoms noted that were cleared once the person went on a gluten-free diet. These include migraines, sinus headaches, mood swings, emotional issues, muscle and joint pain. It is a disease that can affect many systems and can be misdiagnosed repeatedly. It is very common for a patient to be told for 20 years that they have irritable bowel syndrome, when in fact, it is celiac disease.
How Celiac Disease is Diagnosed
The typical route to diagnosis is a long one for most patients. They may have gone to many doctors with their symptoms, but celiac disease is not a typical diagnosis. The patient may have tried numerous stomach medicines and topical creams, but nothing has solved the problem.
Once a medical professional begins to put the pieces together with the various symptoms and suspects celiac disease, the first step is a blood test called a Celiac Comprehensive Panel. The blood is tested for the presence of immunoglobulin A (IgA), tissue transglutaminase (tTG), and immunoglobulin A antiendomysium (AEA) antibodies. These tests are considered 98% accurate and specific for celiac disease (Bower, 2007, p.10).
A positive blood test will lead to an endoscopy, the gold standard for celiac disease diagnosis. The physician will examine the intestine and take three to four biopsies of the small intestine to assess the damage done to the villi. The biopsy specimen is then sent to the laboratory for confirmation of the diagnosis (Bower, 2007, p.10).
To confirm the presence of dermatitis herpetiformis, a biopsy of the skin close to the rash (not directly on the rash) needs to be performed.
It is important that the patient continues to eat gluten until all of the diagnostic testing is done. Starting a gluten-free diet too early in the diagnosis process will skew the results.
Steps after Diagnosis with Celiac Disease
A diagnosis of celiac disease can be shocking to the patient. To be told that they must avoid gluten for the rest of their lives can be overwhelming and depressing. We live in a world where gluten seems to be hiding around every corner. The first year of eating gluten-free has a steep learning curve and can be socially isolating.
It is important that the newly diagnosed patient with celiac disease forms a patient care team consisting of a dietician, a gastrointestinal doctor, and a support group, if available. All of the members of the care team need to know the ins and outs of celiac disease because they will be supporting and monitoring the patient while he or she adjusts to the gluten-free diet. The primary care physician needs to be alerted of the patient's health status so that any changes in maintenance medicine and future medical needs can be addressed. The pharmacy must also be alerted so that they can note the gluten-free status in the patient's file. If the patient is a child, the school system, most notably the school nurse and the child's teacher, need to be alerted. There are administrative disability plans that can be filed to accommodate the child's dietary and social needs that vary by state, if needed.
A dietician can give the patient tips for daily living and monitor food diaries to make sure the patient has a balanced diet that is also gluten-free. The gastrointestinal doctor can follow up with blood tests to monitor the organs and how the levels from the Celiac Comprehensive Panel decrease as the patient adheres to the gluten-free diet. The support group helps with the social isolation and updates the patient with new discoveries related to the gluten-free lifestyle.
It is very important that children with celiac disease know what is safe and unsafe to eat, especially if they are in school. They need to learn how to become label readers. Dieticians can provide resources and recommend books that will help children with the transition. One book talks about an easy way for children to remember the unsafe grains. In Adam's Gluten Free Surprise, Debbie Simpson suggests that the acronym BROWN can be memorized to help remember that "Barley, Rice, (most) Oats, and Wheat are Never ever to be eaten" on the gluten-free diet. Another helpful book, The GF Kid by Melissa London, is written by a child with celiac disease and gives hints and support to other gluten-free children.
After the support care team is assembled, the patient needs to clean the house of all gluten products. If the household will be divided, with some people still eating gluten products, then designated areas for gluten-free food need to be established and the family members need to be educated about the dangers of contamination. A few crumbs of gluten are all that need to be ingested to set off the autoimmune reaction. Designate clearly marked containers in the pantry and freezer to keep the gluten and gluten-free products separate. Clearly label condiments such as butter or jelly as belonging to the gluten or gluten-free container. Contamination could occur from dipping a knife into the condiment jar after it touched bread that has gluten. Using green and red plastic containers can help distinguish safe from unsafe foods for children with food allergies. It may also be useful when family members or babysitters are watching the child and need to know which snacks are safe.
At the beginning of each school year, speak to the teacher and provide a description of celiac disease and the needs of the child. Gluten-free snacks may also be given to the teacher so that the child will have something to eat during snack time or when other treats are handed out. When going to birthday parties, make sure they have gluten-free cupcakes to eat when the cake is cut.
When a family member is diagnosed with celiac disease, there is a 10% chance that siblings also have it. In the family in the case study, two of their other children ended up with the gluten issues even though they did not show obvious symptoms of it. In the literature, these kinds of patients are called "silent celiacs." In fact, one of those two could not officially be diagnosed with celiac disease from the endoscopy because the inflammatory cells were not visible in the biopsies. However, the gastrointestinal damage was there and his blood test was positive, so he has been placed on the gluten-free diet. Other relatives need to be alerted of the celiac disease diagnosis because someone may have been struggling with digestive issues for years and may want to get tested for celiac disease.
The last step, which is one that will be a lifelong process, is to become a gluten detective. Gluten is everywhere. It is in the obvious products such as pastries, cookies, and cakes. It is also in the not-so-obvious products such as Play-Doh, licorice, lip balm, and envelope glue, to name a few. It is used as filler in most processed food and soup. To the patient with celiac disease, it seems to be everywhere. The patient must be aware of food labels and cook more food with basic components.