What are medical students learning about Celiac Disease these days?

I’ve been wondering this for a while. I graduated from medical school 10 years ago, which makes me a relatively “young” doctor.  Although I did learn about Celiac Disease during my medical training, the image that I had burned in my mind was of a sickly child with a huge belly, diarrhea, and failure to thrive.  I do not recall seeing a single adult patient with it during my clinical years of medical school, outside of a patient with Celiac who came to one of our genetics lectures to share her experiences.  I vividly remember thinking that her gluten free life sounded horrible (sad, but true!)

Although I now work in a community hospital, I have a teaching appointment at a large, well-respected medical school which allows me to be able to interact with and teach medical students on occasion.  I recently worked with an exceptionally smart and motivated student who hung out with me for a day. Just for fun, at the end of our day together, I asked if she had ever heard of Celiac Disease.  She told me that she had learned about Celiac Disease during her pre-clinical years (first and second year).  I gave her a short quiz on what she had learned about Celiac Disease. Here are her answers:

What is Celiac Disease?  An autoimmune disease where the body produces an antibody to gluten and is unable to digest gluten.  Exposure to gluten leads to characteristic GI symptoms of bloating and diarrhea, and is also associated in some cases with dermatitis herpetiformis.

How is Celiac Disease diagnosed? Testing for the presence of TTG antibodies.

Have you seen a patient with Celiac Disease? If so, what were his or her symptoms?  Yes, it was a man with bloating, diarrhea, weight loss, and a rash of the upper extremities.

What is your best estimate as to the prevalence of Celiac Disease?  1 in 100,000

I thought that her answers were okay until I read the 1 in 100,000! Although these are the answers of only one medical student, who is only half way through her medical schooling, my impression is that students are still learning that Celiac Disease is a rare disease associated with digestive and skin symptoms only. I really hope that I am wrong, and I will report back as I further investigate this topic.

Are any of you in medical or nursing school right now? If so, would you be willing to share what you have actually learned about Celiac Disease in your lectures?


14 thoughts on “What are medical students learning about Celiac Disease these days?

  1. Cindy

    I have two friends who just finished nursing school (RN) May 2013. BOTH said they never heard about celiac. Except from me.

    1. Cindy

      Sorry forgot to add, I just finished a nurse aide program. The nursing instructor did talk about it. I think because she has celiac…

      1. Jess Post author

        Hi Cindy,
        Thanks for taking the time to post a comment! It is so fascinating that your friends did not learn about Celiac Disease during their recent educational experiences.
        I had been falsely optimistic that newly trained doctors and nurses would be better able to recognize the symptoms of Celiac in their patients than their older peers. Now I am not so sure…they are not going to suspect that their patients have it if they think it is extremely rare, only presents with GI symptoms, or haven’t learned about it at all!

  2. Kelly L

    My 8 year old has celiac and Crohn’s disease ,dermatitis herpetiformis ,eosinophilic esophagitis and gastroesophageal reflux .sensory prossesing, asthma and ADHD . I also have two other children and myself with celiac disease . You might recall @patient celiac we’ve spoke on a group before.I had two take my little girl Aaliyah to emergency Sunday room becouse again she was glutened at school (I provide food )another girl kept putting her cookie and sandwich on Aaliyah and that’s all it takes she very sensitive . I very really ever take her into ER she catches everything so me and her doctor try to avoid it but after vomiting continuously Friday evening till Sunday morning and some bloodie sto
    And not doing anything else but sleeping she had to get iv for fluids , my doctor wasn’t there but called in orders . We’ll after a couple hours a attending doctor from emergency room comes into my celiac child’s room and hands me ritz crackers and tell me to try to get Aaliyah to eat them. I kindly told him to leave my child’s room he would not be treating her from this point and called my doctors answering service and when she called we decided it would be safer at that point to take her home and bring her to office to prevent her getting glutened again . So I think a lot more should be being taught in medical school . She’s still sick if I new how to attach pic I would . Something like this could of caused a lot of harm . Thank you for posting you do great work

    1. Jess Post author

      Hi Kelly,
      Your experience sounds absolutely horrifying and thank goodness you were able to prevent Aaliyah from getting glutened again. I have heard so much about children with both Celiac Disease and food allergies experiencing food based bullying at school that it makes my heart hurt. Thank you for being brave and sharing your story with me. Thank you also for having the guts to fire the ER doctor!
      I almost got glutened myself at a hospital last year after I had my 4th child. I ordered a gluten free sandwich off of the menu and I was so tired that I almost took a bite of it, until I realized that it was on regular bread. This was back before I went off of almost all grains. I learned that I could never let my guard down, and although we hope that we can be safe from gluten in hospitals, that it is not always true.
      I hope that your daughter is starting to feel better. You guys have been through so much….

  3. Sophia

    Im not surprised of your findings. Think it will improve over time. It’s a trickle down effect. Ironically I am a registered dietitian diagnosed with celiac disease for 12 years. I finished my training in 1992 and celiac disease only got a mere mention in schooling. I’ve seen tremendous changes since I was diagnosed and feel as more folks are diagnosed we can only hope to spread the word. It is frustrating that there continues to be misinformation and so many people don’t take it seriously but I remain hopeful.

    1. Jess Post author

      Hi Sophia,
      It is great to hear that you have personally experienced an improvement in awareness. I hope that in 10 to 12 years that I am able to appreciate a difference too! I am trying my best to be patient with all things related to this disease and some days my impatience comes out and gets the best of me.
      Your patients with Celiac Disease must be so thankful to be able to work with you.

  4. Molly (Sprue Story)

    Oh dear! No wonder they only learn about it for an hour if their professors think of celiac as a disease affecting 1 in 100,000! You’re completely right that there are other diseases doctors and patients also need to be aware of, but I’ve been wondering how many multisystemic diseases there are with as high of an incidence as celiac has, and whether doctors are more, less, or equally aware of any such diseases (and whether they suspect them with more or less frequency). Then again, if you go in with general complaints as a woman, it seems your thyroid is checked as a matter of course. If celiac would just be tested for along with the barrage of other tests a PCP generally gives, there’d be no need for more suspecting of it. Perhaps the test is just more expensive?

    Anyway, I’ve gone off topic, but thanks for sharing this anecdote, even though it’s discouraging. I’ll be looking forward to reading more about this.

    1. Jess Post author

      I think that the issue is that it’s still not on the physicians’ radars yet. And it will be, with time, but I don’t want the younger generation (I think that includes you!) to have to have such dramatic delays in diagnosis like all of us old folks have.
      I will definitely update the posting when I find a med student who can answer 1 in 133 (when I am done hugging him or her and jumping up and down!)

      1. Molly

        Yes, I think mostly what I’m wondering is how fair it is to expect that celiac disease should be much more on doctors’ radars than it is. Basically, what other possible diagnoses are competing for their attention when someone comes in with the more recently understood symptoms like infertility or anemia, and are those other diagnoses more or less common than celiac disease is? Is it fair for me to think that when someone goes to a doctor with complaints of tiredness, for example, which is a symptom associated with lots of conditions, that the doctor’s mind should go to celiac? Or are there other things above it on the list? In that case it might be helpful just to test for it more often, given that it is associated with such a variety of symptoms which are all in turn associated with other illnesses. If the blood test were standard and came back positive, that should put it on the doctor’s radar!

  5. Liza

    After my doctor confirmed my celiac diagnosis through endoscopy, the nurse in recovery asked me if I would like a snack. They were offering muffins! I was like, UHHHH, NO. I told my doctor that while it was nice that they offered snacks, they should really consider offering some gluten free options.

    1. Jess Post author

      Hi Liza,
      I cannot believe that they don’t have GF options. Hopefully they will take your suggestion and start to do so. My hospital is pretty small and they did have GF cookies for me after my last colonoscopy (although if you read any of the earlier comments in this thread, the same hospital did almost gluten me last year when I was postpartum). We really can never let our guards down.
      Thanks for stopping by and checking out my page!

  6. Nick

    As a Gluten Sensitive sufferer myself, all forms of Celiac Disease should be recognised. It did take my hospital almost an hour to russle a GF option after a surgery although a baked potato and cheese wasn’t exactly what I wanted after surgery (I do suffer from lactose intollerance also!) but I was mighty hungry and willing to bear the consequence.

    1. Jess Post author

      It seems that we all do have our hospital GF eating horror stories, Nick. Just yesterday a woman with celiac disease told me that her GF option as a patient was a box of Rice Krispies (the non GF ones that contain malt flavoring!)

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