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“Up to Date” Management of Celiac Disease in Adults

“Up to Date” is an online medical database for physicians and other practitioners.  I use it almost every day when I am at work to get a brief overview of the most recent evidence regarding the diagnosis and management of my patients’ problems.

I just reviewed the most recent “Up to Date” highlights on the management of Celiac Disease in adults (published April 10, 2013). Here are some of the highlights:

There are 6 key elements in the management of Celiac patients (note mnemonic CELIAC):

  1. Consultation with a skilled dietician.
  2. Education about the disease.
  3. Lifelong adherence to a gluten free diet.
  4. Identification and treatment of nutritional deficiencies.
  5. Access to an advocacy group.
  6. Continuous long-term follow-up by a multidisciplinary team.

I highlighted #4 because I think that it is in important one to discuss and a reminder that the management of our disease is a bit more complicated than just eating gluten free foods.

The authors suggest that newly diagnosed patients should have blood work done 4 to 6 weeks after starting the gluten free diet, which should include a CBC (complete blood count, to evaluate for anemia), folate and vitamin B12 levels, iron studies, liver chemistries, and Celiac antibody levels.  In most cases, TTG (tissue transglutminase) IgA levels should decrease to normal within 3 to 12 months of going gluten free.  The authors reiterate that the most common cause of persistently elevated celiac antibodies is continued exposure to gluten (whether intentional or not).

Although the authors still recommend a repeat endoscopy and small bowel biopsy 3 to 4 months after going gluten free, they admit that this is debatable.  An increasing number of physicians will only repeat the biopsy for patients with persistent symptoms after going gluten free.

“Nonresponders” are patients who have persistent symptoms and/or elevated antibodies and/or abnormal small bowel biopsies after 2 years on the GF diet.  I plan to discuss this topic in further detail in an upcoming post.

The authors recommend monitoring for specific nutritional deficiencies which are associated with Celiac Disease, including the following: iron, folic acid, calcium, vitamin D, thiamine, vitamin B6, vitamin B12, magnesium, zinc, copper, and selenium, especially at the time of diagnosis. This is pretty much in line with the recommendations from the University of Chicago Celiac Disease Center.

Patients should be evaluated for bone loss using a DEXA scan at time of diagnosis and at one year intervals. As an aside, I was unable to get my own insurance to cover this for me, and my out of pocket quotes ranged from $650 to $800. I am going to have to start to pick this battle again soon.

Family members should be screened.  The authors quote that 5-11% of first degree relatives (parents, siblings, children) will also have Celiac Disease. This is quite a bit higher than some of the other estimates which I have seen.

A few things in this article which I had never heard before:

–  It is normal for women to experience breast tenderness in the 1st 3 months after going gluten free….

– Gluten challenges in children with Celiac Disease may increase the risk of the development of additional autoimmune disorders, such as type 1 diabetes…

– Improvement in dermatitis herpetiformis may not occur for 6 to 12 months after going gluten free…

I just tried to remember what the CELIAC mnemonic stands for, and failed miserably, so I am going to go to sleep instead.  Thanks for reading and good night!

Reference:

“Management of Celiac Disease in Adults.” By Ciclitira, P.J.  UpToDate, April 10, 2013. www.uptodate.com.

8 thoughts on ““Up to Date” Management of Celiac Disease in Adults

  1. Kim Jorgensen Gane

    Excellent tool for doctors and practitioners. I hope more of them will access it when patients come in and ask to be tested. Too often, they still get the blank stare, or the eye roll about spending too much time on the Internet. Gluten free often isn’t enough, which is why I’m absolutely in support of the additional nutritional testing. There is a vast section of the population that is afflicted by intolerance or sensitivity to the gluten/dairy/yeast trifecta, and even fewer are actually diagnosed as such. The Yeast Connection (William Crook, MD) helped me to achieve pregnancy after six years of infertility, and going gluten free after my first trimester (my husband had colitis), when I STARTED having severe morning sickness, helped me to stay that way. Every BODY is different, and we are in need of more individualized and integrative and self-intuitive medical care vs. the cookie cutter direction in which we’re currently disastrously headed. Your fellow visionary, Dr. Lissa Rankin, MD, with her book, Mind Over Medicine, is sure to have a huge impact. I’m so pleased when I find MDs like you that are brave enough to be change-makers, rather than status quo upholders.

    1. Jess Post author

      Hi Kim,
      Thanks for much for providing the information about The Yeast Connection and Mind Over Medicine. I have not read either book and will definitely check them both out.
      I hear you loud and clear on the cookie cutter medicine, and based on what I can see, it is only going to get worse and worse. All of us, as patients, need to increase our health and medical literacy. Thankfully, we can read and share ideas on the internet. The most challenging part is making sure that the internet resources that one comes across are reliable and up to date.
      Do you have your own web page by any chance? If so, please feel free to share the link.
      Jess

  2. Kim Jorgensen Gane

    Thanks so much, Jess. I have two, actually:
    http://www.GlutenNaziMom.org
    and
    http://www.WestCoastPosse.com (writing, women empowerment, etc.)

    Please subscribe to my emails, as I will be releasing an online program for infertile couples near the end of the month (June 2013). I agree with you about vetting the information that is out there on the internet, for sure! I am not a doctor. I am only sharing my own experience and success with common sense practices I believe can help infertile couples who want desperately to have babies, but are scared to death to have broken ones, to make big changes that can help them “GANE” back and OWN their fertility naturally, and to help ensure a whole, healthy baby as a result.

    Together we will change the way people address and own their own wellness, and what they expect from the medical community. It’s a long road, but our voices are powerful.
    –Kim Jorgensen Gane

    1. Jess Post author

      Thanks Kim! I thought that I recognized your name from Twitter, I follow you on there! I’ve been working a lot the last week so I’m not connecting the dots as quickly as I usually do. Looking forward to following both of your blogs. Thanks for all you are doing to help those who are experiencing infertility. Hope we can connect from time to time!
      Jess

  3. Patricia

    Thank you, Jess! I was diagnosed with Celiac Disease last year and have IBS symptoms. I purchased Digestive Advantage Intensive Bowel Support without reading the entire package information. Big mistake: It contains wheat & soy! I called company to question this, especially, the wheat and was told that it would be noted! Huh? What does that mean?

    I’m going to try the Florajen 3.

    Thank you again for all of this great helpful information!

    1. Jess Post author

      Hi Patricia,
      Don’t worry, the first probiotic blend that I was sold at my local health food store contained wheat as well…thankfully they let me return it and I got my money back! The irony is that it was actually billed to me as being GF when I purchased it.
      I have become a huge fan of Florajen 3, and no, I do not own stock in the company or make any money off recommending it. I actually ended up starting on it because it was one of the only 3 blend probiotics sold at the pharmacy at the hospital where I work. Now I am hooked.
      Thanks for taking the time to read and comment. Although I try my best to keep this page up I rarely get a chance to analyze all of the web traffic to my page, so sometimes I wonder if anyone is reading anything that I’ve written.
      Happy New Year!
      Jess

  4. cheryl

    I just found your page I am celiac to been for 5 yrs now my stomach just burn really bad and i watch everything i eat, i just started back on my probotic called phillips but i think i am going to try Florajen 3 like you are taking. I have never had my vitamin D or B12 checked i am bloated all the time and tried all the time what can i do about that? looks like I am pregenant

    1. Jess Post author

      Hi Cheryl,
      My first question for you is who is managing your celiac? Is it your primary care physician or a GI specialist? Monitoring of Vit D and other levels is pretty much the standard of cafe for celiac, so if your doctor is not doing this then you may need to find someone who had more knowledge about celiac.
      It is concerning that you are still having symptoms after being GF for so long…is it possible that you have another medical problem in addition to celiac?
      Jess

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