Frequently Asked Questions About Celiac Disease

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Frequently Asked Questions About Celiac Disease

Brief answers to some of the most frequently asked questions about celiac disease...

If I experience celiac disease or gluten intolerance symptoms, can I try the gluten-free diet before an actual diagnosis?

Most health professionals recommend that all screening and diagnosis occur prior to experimenting with a gluten-free diet.

Shortly after eating a gluten-free diet, the antibody screening blood tests and necessary biopsies become unreliable and will skew an accurate diagnosis. When there is no gluten consumed, you no longer produce the telltale antibodies.

Which tests are currently being used to screen for celiac disease?

The gold standard for medical diagnosis (and for health insurance purposes) is the following blood antibody test panel  and intestinal biopsy. 

  • Anti-endomysial antibodies (EMA) - IgA
  • Anti-tissue transglutaminase antibodies (tTG) - IgA
  • Total IgA level

An endoscopic biopsy of the small intestine is typically a 10-minute procedure performed under sedation.  The doctor inserts a tube into your mouth, through your stomach and into your small intestine (duodenum) where small tissue samples are obtained.  It’s important to obtain at least 4 or more samples from different parts of the duodenum, including the duodenal bulb, to yield the highest diagnostic value, and have the samples interpreted by an experienced pathologist. 

For more extensive information on testing methods, including genetic testing, see Testing for Celiac Disease.

What if I tested positive for the genes associated with Celiac Disease? What's next?

If you have performed a genetic test for celiac disease and have either the HLA DQ2 or DQ8 gene along with symptoms, it is highly recommended that you have the antibody blood test panel to further screen for celiac disease. Genetic tests can give you an idea if you have the predisposition for celiac disease (97% accuracy), or gluten intolerance. Genetic tests are convenient for ruling out celiac disease, but by themselves are not a diagnosis of celiac disease.  Only about half the people with gluten sensitivity have one of the two gene variations seen in virtually all celiac patients. 

If you are a first degree relative (parent, child or sibling) of a biopsy-diagnosed celiac, and you also have the genetic predisposition, it is recommended that you be screened immediately for celiac disease. Typically, 10% of first degree family members will have the disease even if they don't experience symptoms.   

I have the genes for Celiac Disease, but don’t have any symptoms. Should I stop eating gluten?

According to Dr. Sheila Crowe, M.D., a professor of medicine and director of research at University of California, San Diego School of Medicine, having the genes HLA DQ2 and DQ8 puts you at higher risk of celiac disease, but they don't confirm a diagnosis.  95% of the people with CD have the gene HLA DQ2 and 5% of those with CD have the gene DQ8.

If you have the genes for celiac disease, it’s important for you to be further tested with an antibody blood test panel and biopsy.  If left untreated, celiac disease can lead to other complications such as infertility, osteoporosis, type 1 diabetes, thyroid problems, autoimmune disease and intestinal cancer.  It is also important to have these tests before cutting out gluten from your diet.

 

What about stool and saliva testing?

At this point, Western medical doctors and health insurance companies do not support using stool or saliva tests in screening for celiac disease or gluten intolerance because there are no peer-reviewed studies validating these types of tests. 

Are there tests for gluten sensitivity?

Currently, there are no tests to identify gluten sensitivity.  However, researchers are working toward identifying biomarkers that can diagnose gluten sensitivity. A recent study by Dr. Alessio Fasano, medical director of the University of Maryland's Center for Celiac Research, shows that gluten can set off a distinct reaction in the intestines and the immune system, even in people who don't have celiac disase.  Symptoms such as abdominal pain, bloating, diarrhea, constipation, anemia and other celiac symptoms should alert your healthcare provider or physician that you may have gluten sensitivity.  After ruling out celiac disease with blood tests and intestinal biopsies, and you’re still symptomatic, it makes sense to see if symptoms improve on a gluten-free diet.

What is dermatitis herpetiformis?

Dermatitis herpetiformis (DH) is an extremely itchy, chronic skin rash with bumps and blisters typically found on the elbows, knees, back and buttocks.  The cause is unknown, however it is frequently linked to celiac disease.  The diagnosis of DH is confirmed with a simple blood test for IgA antibodies and a skin biopsy.  Treatment consists of medications and a gluten-free diet.

What are the symptoms of celiac disease?

There are a variety of symptoms and conditions associated with celiac disease.

One of the reasons that celiac disease seems to be under diagnosed is because many of the symptoms are similar to other commonly diagnosed conditions, or the symptoms may be too subtle to notice. Onset may be so gradual that a person may not realize the symptom(s) is abnormal.

Prior to a recent study conducted at the University of Bologna, Italy, 11/2014, diarrhea and weight loss were considered the leading symptoms of celiac disease.  Now it appears that the more common symptoms of anemia, bloating, unexplained osteoporosis, reflux, nausea and vomiting are presenting more frequently.

The Celiac Disease Foundation has a very thorough checklist that can be used as a tool to help you and your physician determine if you or your child should be tested for celiac disease.  It is not meant to be used for self-diagnosis, but to help you to determine if you or your child should have the celiac disease panel blood test.

Click here to access:  http://celiac.org/celiac-disease/symptoms/checklist/

Ruthe Brown
I'm feeling overwhelmed yet hopeful. I've avoided almost all forms of wheat from my diet for three days now and I definitely feel a difference. Will discuss these results with my doctor and proceed from there.
Jan
Speaking to your doctor is an excellent next step. It's always a good idea to test for celiac disease before going gluten-free. After meeting with your doctor and determining your next step, we would be happy to speak with you about the process of going gluten-free to avoid feeling overwhelmed. The emails you will be receiving automatically can also offer a simplified and an organized way of approaching going gluten-free.
ncolombo
How soon will I feel better after going gluten free?
greg
It really is difficult to say how quickly you will respond to being gluten-free, but for many, the improvements can be felt within a matter of days. Intestinal damage, depending on how severe it is, can take up to a year to resolve.