Follow-Up for Celiac Disease Often Irregular and Inadequate, Study Finds

Calendar Card - JanuaryThanks to Family Practice News for pointing me to this study published in Clinical Gastroenterology and Hepetology entitled Patients with Celiac Disease are not Followed Up Adequately.

As you can imagine, you clever readers you, the study indicates that post-diagnosis, many people with celiac disease do not receive adequate care. Data was collected on 122 patients diagnosed by the Mayo Clinic and Olmstead Medical Center.

The patients were overwhelmingly female (70%) with a median age of 42 years, and their medical histories were examined for a five-year period. As the Family Practice News article goes on to explain, the number and frequency of “celiac disease visits” that patients had was looked at — in other words, visits with any sort of medical practitioner who addressed the disease, its symptoms, and its treatment (a gluten-free diet).

Patients were classified as having either no, irregular, or regular follow-up. Of those patients with at least 4 years of follow-up (113 of the 122), only 35% had regular follow-up, defined as 2 or more visits to a practitioner and 2 or more serologies (ie, bloodwork), starting at least 6 months after diagnosis and with at least 6 months between them.

More than a third of patients (37% or 42 patients) had at least one visit that did not include “documentation of gluten-free diet compliance”. The only factor researchers found as being related to regular follow-up was diarrhea: patients who had diarrhea at the time of diagnosis were more likely to have regular follow-up. Neither age, sex, genetic history, nor other symptoms were related to regularity of follow-up.

Given how many cases of non-responsive celiac disease are actually caused by noncompliance with the gluten-free diet, and how many scary diseases celiac disease is linked to, it’s surprising how lax follow-up visits can be. Then again, there are no clear, widely accepted standards for follow-up visitation. Speaking for myself, I know I would have fallen into the no- or irregular- category in the 5 years post my own diagnosis.

How often do you see a doctor, nutritionist, or other medical professional in relation to managing your celiac disease? How often do you get bloodwork done, and what do you look for (tTG antibodies, transaminases, thyroid panel, etc.)?

7 thoughts on “Follow-Up for Celiac Disease Often Irregular and Inadequate, Study Finds”

  1. From diagnosis my doctor was seeing me annually including bloodwork. However over the last year he has changed that to every six months. Additionally he does bone density scans every other year, a colonoscopy (if I ever get a good one I can go every other year, but have had to do them annually for the past four years). He also does an endoscopy every year.

    When I hear of people going on the GF diet on their own to see if they feel better it always bothers me that they don’t get tested for Celiac. They are definitely not getting any followup care. They may not even realize all of the other diseases they are at higher risk for and very well may be lacking in other vitamins an minerals that you don’t get from the GF diet. Plus, the more people who are actually diagnosed, the more money will go to research.

  2. When I asked my doc about getting tested for Celiac, he told me to just go on a gluten free diet and see if I feel better. Didn’t write anything down, didn’t suggest any test and I have most of the symptoms…

  3. I was diagnosed 14 years ago. I get blood tests every year and have seen my gastroenterologist at least every 2 years, but it is usually when I’m having problems with diarrhea. I’ve had about 5 endoscopies and colonoscopies. I’ve subsequently been diagnosed with colitis. Many times, the blood tests showed anemia and other deficiencies which have been treated. I strongly recommend seeing a specialist or a family practitioner who understands celiac. My doctor has been wonderful and very positive in helping me adjust to the diagnosis and remain healthy. I have followed a model gluten-free diet and still have had some issues. Please get checked regularly.

  4. I was diagnosed with Celiac Disease in March 2010, after 3 years in a row of bad bone density readings. My internist was very concerned as she called me her “super woman” one of the healthiest patients in her practice. I have always been athletic, lifted weights, eaten very healthy, no smoking and rarely consumed alcohol. My overall health was great. She recommended a staff endocrinologist to check my thyroid, thinking perhaps I had an undiagnosed thyroid condition. They did a series of blood tests which came back as positive for Celiac Disease. They immediately recommended I get an endoscopy to confirm the diagnosis. Being asymptomatic, other then my poor bone density readings, I consider myself incredibly lucky to have had such a fabulous and thorough physician who always asked me several questions at the beginning of my annual check-ups. However, this is very much a two way street. I made sure to see my internist every year, almost exactly to the date, I would answer all her questions honestly and usually offered even more information about my lifestyle to ensure my records were accurate and in-depth. After the endoscopy confirmed that I indeed had Celiac Disease I immediately went on the GF diet and made sure every Dr. I saw, even my dentist, was told of my new found “issue”. I also continued to have regular appts with the endocrinologist, gastroenterologist and my internist, all of whom monitor my condition. I believe one must be very proactive when it comes to their health. If your Dr’s aren’t following up on your conditions, ailments and diseases, then clearly, you’re seeing a bad physician and you must find one that is attentive to your needs. It’s always a good idea to read about your illness so you can learn how best to make sense and apply the appropriate changes to help keep yourself in the best possible health. Both you and your Dr. are responsible to monitor your illness.

  5. You need to be checked for other auto-immune illnessess, such as loss of thyroid function. Also, have your vitamin levels checked. I think having additional biopsies are a waste of your money, unless you are entirely asymptomatic when you fail your diet. What will the doctor tell you after a biopsy… Do a better job with the diet? Most of us know when we have been poisioned from suffering symptoms and don’t need a doctor to tell us.

  6. I had no real knowledge of the diet and I still don’t no everything I need to no to function at my best. I have various immune diseases and I take lots of medicines over the past 5 years. My oldest son is allergic to some foods including wheat and my younger son has lots of problems with his stomach. I feel left out of getting the personal care me and my family needs to stay healthy.

  7. I am glad that Lady Gaga is furthering our cause and getting GF eating out there in the public eye.

    The more people that talk about it, the better it is for all of us.

    Whether you are a celiac patient under a doctor’s care, someone on a diet or a celebrity, you should be taken seriously for your special needs. Of course, a celiac patient’s needs are even more critical.

    If more celebs follow the diet that “regular folks” have to be on because of their illness, then more restaurants and food manufacturers will follow suit.

    Believe me, it can only help.

    I love Venice Bakery pizza crusts for example. I have been experimenting with them for the past few weeks and have made some really cool pizzas. I am not Celiac but I am gluten sensitive because of an auto immune disease, Ulcerative Colitis. I feel better when I avoid gluten but won’t be in the hospital if I do eat it. My friends at work tried the pizzas and thought they were really good.

    Celebs like Miley Cyrus and Lady Gaga just make more people talk about it, follow it, read about it, etc. It can’t hurt us, only raise awareness, which is what we really want anyway.

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