The new year is finally here and if you’re making some changes in your life, celiac patients should consider a change to focus on your celiac health in 2018.

In late 2017, Beyond Celiac published a study in BMC Gastroenterology noting that more than a quarter of celiac patients diagnosed at least five years ago haven’t followed up with their primary care provider after getting diagnosed. Most respondents cited “doing fine on their own” as the primary reason for not following up. Others said “they didn’t need to” visit their physician, or their provider was “not knowledgable” about celiac disease.

According to the research, “as disease-specific symptoms and quality of life worsened, the probability of having visited a [health care provider]  increased. Conversely, as dietary adherence worsened, the probability decreased.”

Celiac Patients Resolve to Focus on Health

These are some interesting reasons for not following up with your provider, let’s take them one by one so if you are in this place, you can get to your resolution faster.

  1. Doing fine on my own/I don’t need to:
    Is that really the case? You likely invested in great gluten-free food, conducted hours of research and cleaned out your kitchen, but how do you really know if what you are putting into practice is really working? What if your celiac blood panel, vitamin levels and fiber are not exactly on point?
  2. Provider wasn’t knowledgeable enough:
    We’ve been there! The primary care doctor that diagnosed Emma, had only recently read an article about celiac and thought to test her for it. Then we were referred to a gastroenterologist. In fact, seeing the GI was the first time in many months I felt like a doctor heard and understood what we were talking about. We also saw a dietitian. But I knew more than she did about the gluten-free diet.
  3. Previous visits not helpful:
    The provider might be great at other areas, but celiac might not be one of them. Be thankful you got the diagnosis (this was the exact case with Emma’s primary care doctor) and can move on.
  4. Co-pays too high:
    Health care is expensive and reducing the number of times you need to go is very appealing.

Ideas to Answer These Excuses

  • Even if you think you are doing fine on your own, you should make sure celiac isn’t causing another problem. It can do this if your adherence to the gluten-free diet is less than perfect.
  • To answer #2 and #3 above:
    Get a new doctor. There ARE doctors that are knowledgable about celiac disease and aren’t a specialty gastroenterologist. When we saw the pediatric GI for Emma’s diagnosis, we asked if that doctor recommended a primary care pediatrician who knows a little about celiac disease. She did! And we saw that doctor until we moved to Colorado. If that option is not available to you, try’s provider search.
  • Co-pays too high:
    Do your best to pair your celiac checkup with your annual physical. The annual “well check” is often covered by insurance, you could at least avoid the co-pay and cost of the visit. However, you probably would need to pay for some lab work to check your celiac markers and vitamin levels.

“Celiac disease patients are left on their own to manage a serious, chronic, lifelong autoimmune disease, something that would not happen with other conditions,” Alice Bast, Beyond Celiac CEO stated on its website. “Something has to be done to change that and this study is a wake-up call for healthcare providers who don’t take celiac disease seriously. They often diagnose and then lose track of their patients.”

To add to that thought, celiac disease is so very different from virtually any other disease in how it is treated. In my opinion, the fact that celiac patients are “prescribed” a gluten-free diet that they manage is very different from getting prescribed a drug from the pharmacy. With prescription medicine, you get a prescription for a certain amount of time and the only way you continue with the prescription is to go back and see your doctor. There is no protocol in place requiring celiac patients to get back in and see their doctor. So that is a glitch in the system that should be fixed if we want consistent follow up.

So with the new year, consider your health. I’m not talking about your weight, the latest Weight Watchers program or getting to the gym. Work on your celiac health this year and follow up with your doctor, if you aren’t on a regular schedule with them yet. Be celiac healthy in 2018.

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