What if any follow up have you had since diagnosis?

A study from 2012 showed that between 41% and 88% ad a follow up visit regarding celiac. However, less than 35% of celiac patients were followed up with according to American Gastroenterology Association guidelines. https://loom.ly/ghlgtLM

In 2020 a study showed that at 5 years post diagnosis fewer than 40% of child patients had proper follow up with their doctors. https://loom.ly/a4aOT8E

In 2021, a retroactive chart study looked at 300 celiac patients in the UK, US, and Norway diagnosed between 2008 and 2012 and followed for at least 29 months or two and a half years. On average there were three follow up visits per patient. The study further says:

• Over two-thirds (68.4%) of patients were recorded as having ongoing gastrointestinal symptoms and 11.0% had ongoing symptoms and enteropathy during follow-up.
• Approximately 80% of patients were referred to a dietician at least once during the follow-up period.
• Half (50.0%) of the patients underwent at least one follow-up duodenal biopsy and 36.6% had continued villous atrophy.
  Study link – https://loom.ly/0rsVv6Q

Bottom line here is that many of us don’t follow up. I also think many of us get frustrated with our follow up. Doctors tell us our ongoing gastrointestinal symptoms are probably IBS, which is quite common with celiac disease, but there is no cure. Doctors have no medication to offer to alleviate any symptoms or improve healing. The entire burden of this disease falls on us to adhere to the gluten free diet.

So, tell me about what follow up you’ve had done and if you believe it was adequate for your celiac disease situation.

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