Experts Weigh in Regarding Celiac Disease and Gluten Sensitivity

Gluten Intolerance Group (GIG) held a panel event in the Fall of 2021, “Getting a Celiac Disease or Gluten Sensitivity Diagnosis,” that provided valuable information on seeking a gluten-related disorder diagnosis. Since there wasn’t enough time to address all the questions raised by attendees, we’ve compiled some additional answers here.

Watch the full panel discussion. 

Our panelists were:  

• Peter HR Green, MD — Phyllis & Ivan Seidenberg Professor of Medicine Director, Celiac Disease Center at Columbia University 

• Dr. Kelly Baker, ND, L.Ac. — Naturopathic Doctor  
• Nour Zibdeh, MS, RDN — Integrative & Functional Nutritionist 

Here’s what they had to say. 

The Need to Consume Gluten for Celiac Disease Test Results to be Valid

Q: Is it possible to have celiac disease testing done if you’ve given up eating gluten, without having to re-introduce it? How much gluten needs to be consumed — and for how long – for a blood test to yield valid results?  

A: In terms of how much gluten you need to be consuming before being tested for celiac disease, “…eating one slice of bread a day for two weeks is sufficient”, says Dr. Green. He says the amount and timing does not appear to be related to how long a person has been gluten-free and that re-introducing gluten in this way will yield positive results in 80% of people who have celiac disease. He adds that if a patient will tolerate gluten re-introduction for longer, some of the additional 20% of those with celiac disease will be caught in screening. 

In the future, there will be a test where people will only need to ingest gluten for three days and have a blood test. According to Dr. Green, that will be available soon.

Other Conditions Associated or Confused with Celiac Disease 

Q: Should a person assume they have celiac disease if severe symptoms resolve when on a gluten-free diet but have never been tested? 

A: “Not always” says Nour Zibdeh, MS, RDN, adding it could be non-celiac gluten sensitivity (NCGS). Also, there are many other ingredients — in addition to wheat — in things like breads, pastries, or crackers that could be contributing to their symptoms, including preservatives, flavors, sugar, onion or garlic, milk, cream, vegetable oils, or yeast. Yeast is called out because some people can eat pasta but not bread, she explains. “If doing a gluten challenge with a patient, I always have them choose pasta made with one ingredient — wheat — as opposed to bread. Again, testing is very important.” 

Q: How does dermatitis herpetiformis (DH) relate to celiac disease? Can people who don’t have celiac disease have DH?   

A: DH is a skin manifestation of celiac disease. Some people who have DH do not have any intestinal damage that is characteristic of celiac disease, but some do. Dr. Green says that 20% of those with DH don’t have intestinal damage. DH is diagnosed by doing a skin biopsy instead of an intestinal biopsy. As with celiac disease, DH is treated by a life-long gluten-free diet. 

According to Dr. Green, “We regard DH as celiac disease of the skin. Twenty percent of the people with DH don’t have an abnormal biopsy.” 

Q: What are some differences in symptoms between irritable bowel syndrome (IBS), celiac disease, and gluten sensitivity?  

A: “People with IBS tend to have intolerances to more than just gluten,” says Nour. “Their digestive symptoms are often triggered by fiber intake, legumes, onions, certain vegetables and fruits, milk, and other highly fermentable foods. Often people with IBS say they feel good in the morning but get worse as the day goes on and with eating. Testing is really important though because the symptoms overlap often.” 

More About Testing for Celiac Disease 

Q: What doctor can do genetic testing for celiac disease? 

A: This likely varies. Talk to your primary care doctor. 

Q: Who can order a blood test for celiac disease, and what is the specific blood test that confirms it? 

A: Any doctor can order the tests, but the tests must be interpreted correctly,” says Dr. Green.“It is important to work with a knowledgeable physician. It can be very confusing. There is a ‘celiac panel,’ a ‘super celiac panel,’ a ‘deluxe panel’… Dr. Green says that“…as a celiac GI doctor, we testtTG, IgA,gliadin peptide IgA and IgG; and would typically biopsy anyone who is positive in any of those.”

Q: Does a blood test suggest gluten sensitivity?  

A: No, there is currently no test for NCGS. It may be diagnosed after eliminating celiac disease, wheat allergy, and other possible causes of symptoms. 

Q: Can a single blood test confirm celiac disease in children? 

A: In Europe, if there is no endoscopy, guidelines state that tTG needs to be 10 times the normal range and, if so, that the test be repeated. There are two reasons for repeating: the child could have temporary autoimmunity or there could have been a mistake made during the first test. 

Currently, no comparable official guidelines exist in the United States. Discuss your child’s specific health needs and options with your child’s physician. 

Nour also notes that it’s important for patients to look at their results, consider borderline ranges, and discuss results with the provider who ordered the test and with any additional providers involved in helping interpret the results. 

NCGS vs. Celiac Disease 

Q. If someone is told they have NCGS after an endoscopy determines it is not celiac disease, what are the symptoms?  

A: The symptoms can be the same as for celiac disease but without intestinal damage. To diagnose NCGS, one must rule out celiac disease, wheat allergy, and other possible causes of symptoms.

Q: Do some people who have celiac disease have greater sensitivity to gluten? 

A: According to Dr. Green, there is some individual variability, but it is not possible for an individual to know their level of sensitivity (in terms of intestinal damage) since the absence of symptoms is not the same as the absence of damage caused by gluten. 

Q: If a family member tested negative for celiac disease, had bad symptoms which went away with a gluten-free diet, and has first-degree relatives who have been diagnosed with celiac disease, do they have celiac disease or NCGS?  

A: This person has a greater likelihood of having or developing celiac disease due to family history, but it is not definitive. Genetic testing could be useful. If the results are positive, this means that celiac disease could develop at some point, and frequency of future testing should be discussed with a physician. If the genetic test yields negative results, then celiac disease will never develop. 

Celiac Disease Symptoms 

Q: How common is joint pain as a symptom? 

A:According to Nour, “Joint pain is often common in people with food sensitivities, leaky gut, yeast overgrowth, dysbiosis, other autoimmune conditions, and systemic inflammation – with or without celiac disease. Again, it is always best to do testing and rule out celiac disease.”

Q: If a child with celiac disease eats completely gluten-free, should symptoms go away? 

A: Generally, symptoms will resolve. If they do not, it is important to consult with the child’s healthcare team, including a dietitian, who can help uncover any possible sources of cross-contact with gluten that could be causing symptoms. 

Cross-Contact (Cross-Contamination) and Sources of Gluten 

Q. Is it safe to eat at a restaurant if I have celiac disease?

A: Cross-contact with gluten (also referred to as cross-contamination) can be an issue, particularly when your meal is prepared outside of your home or in a more controlled environment. Your best line of defense is to ask questions. Read our article Restaurant Dining: 7 Tips for Staying Gluten-Free. You can also look out for restaurants that are GFFS-validated Safe Spots.  

Q: How should I clean my sink, counter, and other surfaces to prevent cross-contact with gluten?  

A:A thorough cleaning and wiping with soap and water should be sufficient to remove gluten crumbs or particles.

Q: What is vital gluten? 

A. Vital wheat gluten is a flour-like substance that contains a very high concentration of gluten. It is used to improve elasticity and texture in food products. Vital gluten should be avoided if you have celiac disease or NCGS. 

Self-Advocating 

Q: What is the suggested course of action if my doctor won’t test me for celiac disease? What’s the best way when my provider won’t do it? How do you get a provider to test for celiac disease? 

A: The panelists agree that it is sometimes important to seek out a different provider and request a second opinion. If you live near a celiac disease center, that could be a place to start.

Check out this celiac disease center resource list. 

Check out our upcoming Winter Virtual Event on Tuesday, January 18, 2022:  

“Celiac Disease & NCGS: Today and into the Future with Dr. Stefano Guandalini” 

Sign up to attend this FREE event.