forgetfulness

The day I forgot to be my own celiac advocate

**As of January 2017 I have stopped updating this webpage and all comments are now closed. Please visit my new page, www.jessicamaddenmd.com, for my new posts, updated celiac information, and the ability to comment on my old posts. Thank you to all of you for your support!**

My family and I moved back to Cleveland recently and I had my first appointment with my new primary care physician a few days ago. Since it was my first time seeing her we reviewed my past medical history, surgeries, allergies, family history, medications, etc.  prior to my exam. After examining me she sent my prescription refills to the pharmacy, and then printed out a requisition slip for me to take the lab to have my blood drawn for cholesterol levels, a basic metabolic panel, and complete blood count (all normal baseline labs for someone of my age–almost 40!!!) as well as thyroid function labs since I have hypothyroidism from Hashimoto’s disease.

I had a busy rest of my day and it wasn’t until I got home at night and reflected on my visit that I realized my doctor and I didn’t discuss my diagnosis of celiac disease (outside of when I stated it when I listed all of my medical conditions).

She never asked when I was diagnosed with celiac disease and what testing I had done.  She didn’t ask how I was doing on the gluten-free diet.  We did not discuss the need for monitoring for problems associated with celiac disease, such as vitamin D deficiency, anemia and bone loss, or checking celiac antibody levels.  We did not discuss the possibility of being followed in a dedicated celiac disease clinic or by a celiac expert.  It was almost as if my celiac disease wasn’t treated as a “real” disease since there wasn’t a medication to prescribe to treat it. And since it was not at the forefront of my mind that day I failed to bring it up.

I checked a few of the major celiac disease websites and according to the University of Chicago Celiac Disease Center as well as the Celiac Disease Center at Columbia University, follow-up testing should occur yearly for those of us who have been diagnosed > 12 months:

http://www.cureceliacdisease.org/wp-content/uploads/FactSheet6_Follow-Up-Testing.pdf and https://celiacdiseasecenter.columbia.edu/celiac-disease/follow-up.

I also looked up the recommendations on the medical database Up-to-Date, which is for health care providers, and came across this algorithm (for those of you who are visual learners like I am):

Image
* Tissue transglutaminase and deamidated gliadin peptide can be used for monitoring celiac disease.
Other tests may include complete blood count, alanine aminotransferase, vitamins (A, D, E, B12), copper, zinc, carotene, folic acid, ferritin, and iron.
Δ Blood tests at follow-up should be individualized to verify correction of laboratory tests that were abnormal at baseline.
The role of biopsy for monitoring celiac disease is discussed in detail in the text

So, at a bare minimum my doctor and I should have discussed and confirmed that I am not having difficulty adhering to the gluten-free diet, and I should have had my vitamin D level and celiac antibody level (TTG-IgA) checked.

I thought it would be worthwhile to share my experience, as I figured that since I forgot to discuss celiac disease with my own primary care doctor that this may have happened/or will happen to some of you as well. We need to continue to be our own celiac advocates.

Happy New Year to all of you! I hope to reply to your emails and messages soon.

P.S. I do want to report that the pharmacist who filled my prescriptions the next day was excellent and printed out detailed ingredient lists that we double-checked together to confirm that my medications were gluten-free. It sort of made up for my mediocre annual physical.