ID-100260936

Updated Guidelines on the Diagnosis and Management of Adult Celiac Disease

I tried to abstain from reviewing celiac disease research for my 10 day vacation to Massachusetts and failed (proving that I am a big nerd). Earlier today when I checked out Pubmed.gov I came across a June 10th publication entitled “Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology.” This paper summarizes recommendations and information from a panel of 21 worldwide celiac disease experts.  You can find the entire article here. If you have the time, the entire article is worth reading.

As I read I learned some new facts, figures, and celiac disease information:

6-22% of cases of celiac disease are seronegative. This means that between 6-22% of people with celiac disease do not have abnormally high antibodies on celiac blood screening tests but do have abnormal small intestinal tissue on biopsy.

First degree family members of celiacs (parents, siblings, and children) have a 16-fold increased risk of also developing celiac disease if they are HLA-DQ2 positive on celiac gene testing.

If a patient has abnormally high celiac disease antibodies, but a normal small bowel biopsy when endoscopy is done (no signs of celiac), then some of the experts recommend that endoscopy be repeated so that jejunal biopsies can be performed. The jejunum is the 2nd portion of the small intestine and is not normally biopsied when a patient is evaluated for celiac disease.  Video capsule endoscopy can also be used in equivocal cases.

Biopsy reports should include all of the following (this is a bit technical but important for those of us who have copies of our own reports, and/or our family members’):

  • Number of biopsies (including those from the duodenal bulb) and orientation.
  • The architectural features (normal, partial, sub-total or total villous atrophy).
  • Comment on the content of the lamina propria (in CD these are lymphocytes, plasma cells and eosinophils, and occasionally neutrophils, but cryptitis and crypt abscesses should suggest other pathology).
  • Presence of Brunner’s glands.
  • Presence of crypt hyperplasia, villous height: crypt depth ratio (3:1).112 The absence of plasma cells suggests common variable immunodeficiency.
  • Evaluation of IELs (with immunocytochemical staining for T cells (CD3) in equivocal cases) is vital.

After diagnosis with celiac disease, adults should be followed-up annually with all of the following: complete blood count, ferritin, folate, Vitamin B12, calcium and alkaline phosphatase levels, thyroid function testing and glucose levels, liver function tests, and celiac antibody levels. In the absence of symptoms, having a follow-up biopsy appears to be controversial. Most of the experts recommended that it be done between 2 and 5 years after diagnosis. 6 months after diagnosis definitely appears to be too soon.

In regards to a gluten challenge, the authors stated: “To perform a gluten challenge, a recent study recommends a 14-day gluten intake at ≥3 g of gluten/day (two slices of wheat bread per day) to induce histological and serological changes in the majority of adults with CD. The challenge can be prolonged to 8 weeks if serology remains negative at 2 weeks.”

In conclusion, this paper is a comprehensive overview of the latest and greatest in regards to celiac disease in adults.  Now that I’ve discussed it I am going to return to my vacation! Hope that you’re all having a good summer thus far. Please let me know if you come across any interesting articles, research, etc.

Reference:

Ludvigsson J, Bai J, Biagi F, Card TR, Ciacci C, Ciclitira PJ, Green P, Hadjivassiliou M, Holdoway A, van Heel DA, Kaukinen K, Leffler DA, Leonard JN, Lundin KE, McGough N, Davidson M, Murray JA, Swift GL, Walker MM, Zingone F, Sanders DS; Authors of the BSG Coeliac Disease Guidelines Development Group. Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut. 2014 Jun 10. pii: gutjnl-2013-306578. doi: 10.1136/gutjnl-2013-306578. [Epub ahead of print]

 

13 thoughts on “Updated Guidelines on the Diagnosis and Management of Adult Celiac Disease

  1. Cherish

    Thanks for sharing this. I need to make a copy to bring to my doctor (who is of the ‘once you’re gluten-free, there’s no need for follow-up testing’ mindset).

    Have a nice vacation!

    1. Jess Post author

      Hi Cherish,
      You’re welcome. If it makes you feel better my doctor did not recommend any follow-up testing either, until I brought him a list of tests that I wanted to have done at the one year GF point. Since then I’ve found a new doctor!
      Our vacation was great, just got back today and am back to the grind in the morning. Happy 4th to you and your family this weekend!

      Jess

  2. shannon

    Jess,

    Glad to know that I am not the only nerd around! Thanks for sharing this article. The protocol where I am seen is the following: At diagnosis, TTG, IGg/IGa gliadin, copper, lft’s, CBC, zinc, ferritin, iron studies if indicated, vitamin b12, vitamin d, calcium, folate, Pt/INR, and glucose. You also see the nutritionist for an initial consult. At 6 months, labs are repeated that were abnormal and celiac antibodies are tested. You also see the nutritionist for follow up. At one year, the EGD is repeated and a bone density test is done. I was told that they wait a year for the density test in hopes that it will improve so that you get the best baseline after being gluten free.
    Even with this article, I don’t think that it will convince my family members to get tested.
    Thanks again and enjoy your vacation.

    1. Jess Post author

      Hi Shannon,
      Thanks so much for sharing your information and your center’s protocol. I am guilty of not having had a bone density test done since diagnosis. My insurance did not cover it for me, even with a celiac diagnosis, but now that I have a high deductible insurance (and have to pay out of pocket for mostly everything anyway) it’s probably time. Thanks for the reminder!
      Also, you are not alone with family members refusing to get tested.
      I have one family member with dermatitis herptiformis who has declined testing and continues to eat gluten. I have another family member with all of the following who refuses testing: sibling with celiac, DQ2 positive, hypothyroidism, persistent fatigue, and horrible gastroesophageal reflux. I know that neither of these family members read my blog so I feel okay making examples of them…
      Looking forward to ICDS 2015 with you!

  3. Joanne

    Thank you for the list of bloods test that needs to be done as I will compare it with the tests recently done but I am sure only 1/2 of these levels were screened for. Very good to know for future testing.

    1. Jess Post author

      Hi Joanne,
      You’re welcome. It’s always a good idea to check your blood work to make sure that it’s complete. Luckily it’s easier to do so nowadays with online patient portals. I encourage all celiacs to keep copies of all of their test results, if possible.
      Thanks for stopping by and writing.
      Jess

  4. IrishHeart

    I am so glad my GI doc is so thorough with follow up care and testing. (and I am very glad I keep urging people to have follow up care—as some of them do not really get any at all) :(

    I am so glad I am a nerd too–and that some of the best people I know are also research nerds :)

    I found this especially interesting:
    “6-22% of cases of celiac disease are seronegative. This means that between 6-22% of people with celiac disease do not have abnormally high antibodies on celiac blood screening tests but do have abnormal small intestinal tissue on biopsy.”

    Some people erroneously report 30-40% . I care about this particular data because I was seronegative.

    Thanks for the article, Jess….Now get back to vacation!!

    hugs, G

    1. Jess Post author

      Hi IH,
      I have heard the 40% rate too, which is ridiculously high. My favorite internet celiac “myth” that I recently saw being propagated was that up to 90% of kids born to moms with gluten sensitivity will develop schizophrenia during adulthood. Someone had typed it in a nice font, made it into an image, and shared it on Facebook with no reference source, and then a bunch of people started to share it and circulate it.
      So sad. Didn’t mean to go off topic, but thought you’d understand!
      Jess

      1. IrishHeart

        Ah yes, the internet is full of strange and erroneous information.
        This is my mission–stamping out celiac myths. Didn’t plan on becoming such a crusader,
        but things just fall into our laps sometimes. LOL

        And IMHO–You are not off topic—it’s your blog! 😉
        Hope you had a good vacation.

    1. Jess Post author

      Hi Carol,
      Thanks so much for sharing the link to my post. I also wanted to let you know that I love your magazine, Simply Gluten-Free. My mom bought me a subscription for my birthday last year and I’ve recommended it to many since then. I hope you’re having a good summer!
      Jess

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