I’m going to read the new guidelines for celiac disease from the “European Society for the Study of Coeliac Disease (ESsCD) guideline for coeliac disease and other gluten-related disorders” document in the United European Gatroenterology Journal. It is a big document and I’m going to summarize anything new or interesting I find.
These are little factoids I didn’t know or have to update my knowledge.
In western countries, the prevalence of celiac is around 0.6% histologically confirmed and 1% in serological screening of the general population. So that is a big difference between people who test positive on the blood test and then have negative biopsy results. If the US has 350 million people, that means 3.5 million will have positive blood test for celiac, but only 2.1 million will have positive biopsy for celiac.
Regarding blood tests, the higher the TTG IGA is, the more likely celiac is active. EMA IGA is very specific to celiac. It should be used as a confirmatory test when TTG IGA is less than 2 times normal. This could save a lot of unnecessary biopsies if the EMA test is run in conjunction with TTG IGA.
If IGA deficiency is found in blood tests, it should prompt evaluation for other diseases that may cause villus atrophy (VA), such as giardiasis, small-bowel bacterial overgrowth (SIBO) or common variable immunodeficiency (CVID).
Saliva tests for detection of celiac tests are undergoing evaluation with some promising results. Stool tests for celiac have an accuracy of 10% making them useless for diagnostic procedures.
At least four duodenal biopsies should be collected during an endoscopy and at least one should be taken from the duodenal bulb.
Marsh 1 damage happens in 3.8% of the population with negative celiac blood tests. Only 16% of patients with Marsh 1 damage have later proven to have celiac disease. H. pylori infections are typically associated with Marsh 1 damage and when the infection is cleared so is the Marsh 1 damage.
Positive EMA tests correlate with more severe villous atrophy. TTG IGA levels 100 or greater typically show in adults and children with severe villous atrophy. Strict adherence to a gluten free diet for a year will allow 75% of people to have villous atrophy recovery. However, TTG IGA levels at follow up do not correlate with villous atrophy recovery.
If you have negative blood work and positive biopsy. A repeat biopsy after a year and villous atrophy healing is required to confirm diagnosis.
Low positive TTG IGA tests may indicate a false positive. Hypergammaglobulinemia, autoimmune diseases, chronic liver disease, congestive heart failure and enteric infections may cause the false positive.
Negative blood tests but positive biopsy is complicated and requires a significant evaluation of the situation. People with negative blood tests but positive biopsy may be in the early stages of celiac, adopted a low-gluten diet, may have impaired immunoregulation, common variable immunodeficiency, or be using immunosuppressants. Most people with negative blood tests and positive biopsy typically are older at diagnosis, likely to have typical symptoms, more severe villous atrophy, and coexisting autoimmune diseases. It is recommended to rebiopsy after 12 months to evaluate villous healing to confirm diagnosis. But the whole diagnostic process must be re-evaluated and re-examined to confirm diagnosis.
The gluten free diet is low in iron, folate (B12), vitamin D, zinc, copper, B6, and fiber. All should be monitored and supplemented appropriately.
In the first year after diagnosis, frequent follow ups are necessary. If things are stable, annual or biannual follow up is recommended. A follow up biopsy is only recommended if symptoms persist. A bone density scan is recommended within 24 months of diagnosis.
Slow responders are those who have persistent symptoms or abnormal labs after 1 year on a gluten free diet. Many times this is due to continued ingestion of gluten on accident. A repeat biopsy should be performed and if Marsh 1 or less is found, then other diseases such as IBS, microscopic colitis, food intolerances, SIBO, or EPI should be evaluated. If active inflammatory villous atrophy, then consumption of gluten or refractory celiac must be evaluated.
Next they talk about refractory celiac and special concerns with children and teens. I’m about done for the day and here is the link if you want more information or to read.
I wanted this article to inform and I tried not to spin too much of it.