Celiac Information

Looking for some information and other facts regarding Celiac Disease? You’ve come to the right place! Though there are still a lot of unknowns surrounding Celiac Disease, here we’ve collected a lot of what is known about this disease.

What are the Causes of Celiac Disease?

The cause of Celiac Disease, also known as celiac sprue, or gluten-sensitive enteropathy (GSE), is currently unknown.  Research indicates that Celiac Disease is strongly associated with a group of genes on Chromosome 6. These genes (HLA class II) are involved in the regulation of the body’s immune response to gluten protein fractions.

One out of 133 people in the United States is affected with celiac disease. Celiac Disease occurs in 5-15% of the offspring and siblings of a person with celiac disease. In 70% of identical twin pairs, both twins have the disease. It is strongly suggested that family members be tested, even if asymptomatic. Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease.

What Symptoms are Associated with Celiac Disease?

Adults Symptoms

Celiac Disease may appear at any time in a person’s life. The disease can be triggered for the first time after surgery, viral infection, severe emotional stress, pregnancy, or childbirth. Celiac Disease is a multi-system, multi-symptom disorder where symptoms are extremely varied and can often mimic other bowel disorders and are not always gastrointestinal.

Children Symptoms
Infants, toddlers, and young children often exhibit growth failure, vomiting, bloated abdomen, and behavioral changes.

Symptoms of Celiac Disease May Include One or More of the Following:

• Recurring bloating, gas, or abdominal pain
• Chronic diarrhea or constipation or both
• Unexplained weight loss or weight gain
• Pale, foul-smelling stool
• Unexplained anemia
• Bone or joint pain
• Behavior changes/depression/irritability
• Vitamin K Deficiency
• Fatigue, weakness or lack of energy
• Delayed growth or onset of puberty
• Failure to thrive (in infants)
• Missed menstrual periods
• Infertility male & female
• Spontaneous miscarriages
• Canker sores inside the mouth
• Tooth discoloration or loss of enamel

Have You or a Family Member Been Diagnosed With the Following?

• Type 1 Diabetes
• Chronic Fatigue Syndrome
• Fibromyalgia
• IBS
• Eczema
• Sjogren’s Syndrome
• Peripheral Neuropathy
• Thyroid Disease
• Dermatitis Herpetiformis
• Osteoporosis

Dermatitis Herpetiformis (DH) is the skin manifestation of celiac disease characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most frequently found on the face, elbows, knees, and buttocks.  DH patients can have gastrointestinal damage without perceptible symptoms.

Children with Celiac Disease FAQ

How Do They Diagnose Celiac Disease?

A person seeking a preliminary diagnosis of Celiac Disease must be consuming gluten. Specific antibody blood tests are used to identify the presence of celiac disease and are the initial step in the screening and should include: IgA endomysial antibodies (EMA), IgA tissue transglutaminase (tTG), IgG tissue transglutaminase and Total IgA antibodies. It is essential that patients with positive antibody tests, and those with an IgA deficiency, have a small bowel biopsy to confirm the diagnosis and assess the degree of mucosal damage, which is performed endoscopically.

When serology and biopsy are inconclusive, testing for specific HLA (human leukocyte antigen) genes associated with celiac disease may be helpful in screening for Celiac Disease. If these genes are NOT present, it is unlikely that the individual will develop Celiac. A positive HLA or genetic test, however, does not mean that the individual has the condition, as these genes are common in the general population. Patients should consult with an experienced physician to ensure a proper diagnosis.

Dermatitis Herpetiformis (DH) is diagnosed by a biopsy of a skin lesion and staining for IgA in the tissues.  More than 85% of DH patients have small-bowel sensitivity to gluten.  Everyone with DH needs to follow a gluten-free diet in order to prevent symptoms.

What is the Treatment for Celiac Disease?

The only treatment for Celiac Disease (and DH) is lifelong adherence to a gluten-free diet.  When gluten is removed from the diet, the small intestine will start to heal and overall health improves.  Medication is not normally required.  Because osteoporosis is common and may be profound in patients with newly diagnosed CD, bone density should be measured at or shortly after diagnosis.  Consult your physician regarding specific nutritional supplementation to correct any deficiencies.  The diagnosed celiac should have a medical follow-up to monitor the clinical response to the gluten-free diet. Dietary compliance increases the quality of life and decreases the likelihood of osteoporosis, intestinal lymphoma, and other associated illnesses.

Adapting to the gluten-free diet requires some lifestyle changes.  Common sources of gluten are:

• Wheat and all its forms including durum, semolina, spelt, kamut, einkorn, and faro
• Rye
• Barley
• Triticale
• Oats (some Celiacs seem to be able to consume oats so consume at your own risk)

It is essential to read labels that are often imprecise and to learn how to identify ingredients that may contain hidden gluten.  Be aware that hidden gluten can be found in some unlikely foods such as cold cuts, soups, hard candies, soy sauce, many low or non-fat products, and even licorice, and jelly beans.

Potential harmful ingredients include:

• Unidentified starch
• Modified food starch
• Binders
• Fillers
• Excipients
• Extenders
• Malt

Gluten may also be used as a binder in some pharmaceutical products.  Request clarification from food and drug manufacturers when necessary.

Tips for Those Newly Diagnosed with Celiac Disease

So, you’ve just found that you have either gluten intolerance or Celiac Disease and now you’re wondering what to do next. Unless you’ve had prior exposure to a friend or family member living on a gluten-free diet, it will likely be a very difficult adjustment for the first month or two. The good news is that it is the 21st century and you have the internet and all of its resources at your fingertips!

Those that have been struggling with the disease for a decade or longer know how far we have come, and the future holds a lot of promise for people destined to live their lives gluten-free. Whether it is popular gluten-free restaurant chains releasing gluten-free menus or supermarkets carrying gluten-free products, we have come a long way.

The first thing you need to do is prepare yourself mentally for the lifestyle change that is to come. Once you’ve mentally prepared yourself for the change in your life, there are some other things you can do to ease the transition. Here are a few:

Preparing Your Home For a Gluten-Free Diet

Unless your entire family needs to live gluten-free, the first thing you’ll want to do is create a section of the kitchen for gluten-free supplies. Create a “gluten-free shelf or drawer” in the kitchen that will only be used for gluten-free products and make sure everyone knows that is your area.

Another important factor is cross-contamination. This means that you will want some kitchen appliances around the house that are only for gluten-free products. Depending on what you can afford, this includes things like a bread machine designed for gluten-free bread, a toaster designated for gluten-free toast and bagels, or whatever other kitchen supplies you commonly use.

Lastly, you’ll need to find some good gluten-free recipes to make your favorite foods. gluten-free products have a little different taste, but you’ll get used to the taste in time.

Find Gluten-Free Stores in Your Area

Supermarkets have started to make some progress in this area, but you will want to familiarize yourself with the local health food stores that carry gluten-free food. You’ll quickly notice that gluten-free foods aren’t very cheap, so you may also want to consider buying your food online once you’ve figured out which gluten-free products you like the best.

Practice Gluten-Free on the Go

Depending on your profession, finding gluten-free on the go can often be difficult. You can’t just stop somewhere and grab something to eat if circumstances warrant it. You’ll first need to make a habit of always preparing yourself for the day ahead and always carrying some gluten-free foods with you wherever you go. Some good examples of gluten-free foods that travel well are breakfast bars or snack bars, a small container of gluten-free peanut butter to use with crackers or pretzels, or even nuts and dried fruit. You will also need to familiarize yourself with what restaurant chains have gluten-free menus (including fast food). This can get you out of a jam when you are away from home.

Join a Gluten-Free Community

There are a bunch of ways to go about this, and nothing is stopping you from doing more than one. I usually recommend people join a gluten-free support group in their area, as well as become involved in a gluten-free forum online. If you aren’t sure where to start, you should be able to easily find both from our Celiac Resources page.

There is no better resource than those that have been through what you are going through, so make some friends, and don’t be afraid to ask questions. In my experience, the Celiac community is always glad to help!