Celiac Disease Frequently Asked Questions

No WheatI’m sorry I don’t have a giveaway for you this week.  In honor of celiac awareness month, I thought I would list some basic celiac disease frequently asked questions and answers.  I will give the short answer to these questions, but more extensive answers can be found at the resources listed at the end.


What is Celiac Disease?

Celiac disease is an autoimmune disease that is triggered by gluten and causes damage to the villi which line the small intestine.  This damage can affect the absorption of nutrients.

What are the Symptoms of Celiac Disease?

Here are some of the most common symptoms, but the list is very extensive.

  • diarrhea
  • constipation
  • bloating or gas
  • fatigue
  • headaches
  • joint pain
  • numbness
  • irritability
  • brain fog
  • depression
  • fertility problems
  • osteopenia or osteoporosis
  • itchy skin rash
  • mouth sores

How is Celiac Disease Diagnosed?

Celiac disease is diagnosed through a two step process.  First is blood tests.  Typically a celiac panel of tests is run.  If the results are positive, the second step in an endoscopy where the doctor will take multiple biopsies of the lining of the small intestine.  The laboratory then looks for damage to the villi.  The biopsy is considered the gold standard for diagnosis.

How is Celiac Disease Treated?

There are no drugs that treat celiac disease.  The only treatment is life long adherence to a gluten-free diet.  Once on a gluten-free diet, the intestine will heal.

How Common is Celiac Disease?

According to a prevalence study done by the Center for Celiac Research, 1 in 133 Americans have celiac disease.  The majority of those are not diagnosed.

Celiac Disease Resources

University of Maryland Center for Celiac Research
University of Chicago Celiac Disease Center
Celiac Disease Center at Columbia University
National Foundation for Celiac Awareness
Gluten Intolerance Group




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Comments

  1. I know your post is specifically about CD, but I just wanted to also mention that while the endoscopy biopsy is a great test for CD (although people still get false negatives), it will NOT diagnose other forms of gluten intolerance. Someone can be gluten intolerant and not have CD. So if someone gets a positive blood test and a negative biopsy, don’t rule out gluten intolerance all together. While a lot of doctors now recognize CD they have not caught onto the fact that there are other forms of gluten intolerance. I know many people that had a negative biopsy but still suffered for years before they were diagnosed with another form of gluten intolerance. Just FYI for everyone. :)

    • That’s a very good point, Tressa. And I also believe, as you mentioned, that there can be false negatives. Years ago I encouraged people to get tested for celiac and if it was negative I let it go. Now I encourage them to get tested and if negative to then try a gluten free diet to see if it makes a difference.

  2. Some doctors are still ordering endoscopies after a patient has gone off gluten. In those cases the villa may have already started to heal and you will get a false negative. That happened in my case and then the doctor wanted me to do a gluten challenge and then retest. Since I know how miserable I feel when I eat even the tiniest piece of gluten I decided that wasn’t the best choice for me. But I would encourage people who suspect they have CD to remain on gluten until their testing is complete.

    • Laura, you’re absolutely right about that. It’s unfortunate that many people start a gluten free diet before being tested. In the end it’s feeling better that counts, but if you have a celiac diagnosis it’s helpful to know just how careful you nee to be.

    • Enterolab out of Texas does stool sample testing, and you don’t have to be eating gluten to get correct diagnosis. Their results tell you if you have CD, or if you are just gluten intolerant in general, or if you just are gluten sensitive. After a lot of research I believe this is the most accurate testing available.

  3. Christine says:

    I want to get a really good test taken and I want it covered by my insurgence! Does anyone know where I can get tested, and not at Kaiser Permanente. I have been getting periods where I have the most horrific diarrhea and stomach pains. I have ra as well as pain in my joints and back. I had testing done and they came out negative, but I still have diarrhea and stomach pain. I eat a gluten-free diet now and it seems to help, so I am sticking to that, even if it means fixing two meals at dinnertime.

    • If you have been on a gluten-free diet for a while, the tests might not be accurate. If a doctor orders the blood work and endoscopy, then insurance usually covers it, but I guess it depends on your insurance. I don’t think they will cover the stool test. Just because the tests are negative does mean you don’t have a problem with gluten. Give the gluten free diet a good try for 6 months to decide if it is making a difference. Really, there is no need to prepare two meals at dinnertime. My family has always eaten gluten free dinners. Use naturally gluten free foods and supplement with a few specialty items such as gluten free pasta. My family likes Tinkyada brand.

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