IDS Director of Patient Care and Education, Alicia Downs
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Improvements in Celiac testing are coming for People with Type 1 Diabetes!
There are some diseases that, though not caused by Type 1 diabetes, are strongly correlated. Many of these diseases are other autoimmune diseases like Hashimoto’s Hypothyroidism, Psoriasis, RA and others. But one of the strongest correlations is with T1D and Celiac disease.
What is Celiac Disease?
Celiac disease is an autoimmune response to gluten, a protein found in wheat, rye, and barley. It can lead to a host of symptoms ranging from mild gastrointestinal discomfort to extreme weight loss, severe intestinal inflammation, anemia and even bone pain, osteoporosis, infertility, nervous system damage, liver damage and in young children, can be life-threatening if not properly diagnosed and treated. Some people can not even tolerate cross-contamination in cooking areas, while others may be able to tolerate small amounts of gluten at sparse intervals.
Current data indicates that 10% of people with T1D also have Celiac disease.
Which is roughly 5-7x the non-T1D population. However, it can be very hard to diagnose because people with T1D often go years without symptoms. By the time symptoms do occur, they are often widespread and the diagnostic process can be grueling. People with diabetes (PWD) are also hesitant to be diagnosed because, let’s face it, we already face a lot of imposed dietary restrictions with diabetes management! Adding more restrictions seems daunting! Doctors often also overlook symptoms of celiac disease because they assume that digestive issues are complications of diabetes.
Screening is further complicated because the testing used is not as specific as it could be. Current testing is focused on the TTG IgA autoantibody. The first problem is that the patient must be on a normal gluten-containing diet for this test to even be useful, and many patients will have self stopped gluten if they have any symptoms at all.
In children under the age of 5, normal immunologic changes of childhood also render this test highly inaccurate. And since ages 4-6 is a peak time of T1D diagnosis in children, we miss a prime time for screening in kids. The cost of this screening is also not covered by many payers. Because of the inaccuracy, we do not have a standard of care consensus on how and when it is best to screen for Celiac, which allows payors an easy “out.”
A March 2025 study in Medscape News UK – New Antibody Test Improves Celiac Disease Diagnosis T1D
shows that the addition of deamidated gliadin peptides (GLA-IgG) took the accuracy of typical testing up from an accuracy rate of 80.4% to 90.3%. This is an important leap because the final step to finalize diagnosis is small intestinal biopsy, a surgical procedure that carries its own risks, costs and discomforts for the patient beyond that of Celiac disease itself. This added assurance in the blood work screening for celiac, coupled with findings that IgA only based screening was most effective in the first two years post diagnosis and that the addition of IgG based screening after 2 years of diagnosis raises accuracy to the same level of accuracy gives very solid evidence based grounds for screening recommendations.
At Integrated Diabetes Services, we have always recommended Celiac screening at the time of diagnosis and repeated screening every other year for children, and for adults with the onset of any GI symptoms. With this new data, we hope to see payors covering these screenings and prescribers adding them to their practices in more widespread usage.
- I would recommend that People with T1D print a copy of this article and the Cited article and take it to their prescriber to commence screening.
- I recommend getting prior authorization for insurance coverage, and if it is denied, appeal and provide the study data in that appeal to show the benefits and necessity of Celiac screening.
- More than 20% of people with T1D may not show symptoms, and once we do, treatment may be too late to prevent damage and we may be left with ongoing GI issues.
Impacts of celiac disease may also make blood sugar management much more difficult, as issues with absorption of foods and digestive timing can increase rates of hypoglycemia and make adjusting insulin dosage far more difficult for patients and clinicians.
Adjusting to a gluten-free diet is easier now than ever before. The team approach here at Integrated Diabetes Services brings together top Registered Licensed Dieticians and Registered Nurses who are both experts in Diabetes management, as well as people living with diabetes with real-world experience with gluten-free lifestyles and the impacts these have on blood sugar management.
We come alongside our clients to assist with the entire journey from facilitating appropriate diagnosis, treatments, diet planning, insulin adjustment recommendations, to making sure you (and your family) are getting your nutritional needs met while enjoying eating without feeling restricted or missing out on anything!
Neither T1D nor Celiac diagnoses mean missing out on living your best life! But what we don’t know DOES harm us! So staying in the know on screening options and advocating for our best care is key!
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