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"up To Date" Management Of Celiac Disease In Adults

Posted by jebby, 20 June 2013 · 1,770 views

“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 pneumonic CELIAC):

Consultation with a skilled dietician.
Education about the disease.
Lifelong adherence to a gluten free diet.
Identification and treatment of nutritional deficiencies.
Access to an advocacy group.
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 gluten-free 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 pneumonic 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.

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That's very helpful especially for those of us in the beginning stages!  I have had a bad week of accidents so I am going to get more strict!  Thanks for the information.

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You are welcome! I hope that you begin to feel better soon!
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It is normal for women to experience breast tenderness in the 1st 3 months after going gluten free….

 

good to know because I never used to have that problem, but now before that time of the month it's happening, so hopefully that will resolve soon!

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

 

 

And yet, many pediatric GIs will insist upon this step as part of the diagnosis.

Thanks for posting this informative article, Jess.

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Thanks,

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You are welcome. Thanks for stopping by!

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

 

 

And yet, many pediatric GIs will insist upon this step as part of the diagnosis.

Thanks for posting this informative article, Jess.

Hi Irish Heart, It is nice to "see" you on here. I hope that parents can bring this info forward to their kids' physicans to challenge them when they recommend a gluten challenge. Just about all MDs have access to "Up to Date" and should be able to read the article which I summarized.  I think it is important for patients to have as much knowledge as possible and be involved in the decison making process.

All the best to you!

Jess

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Thank you for the post, it is very meaningful to me. It shows that someone, somewhere, in the medical community has begun to really pull the basics of medical support and investigation of celiac disease together. These recommendations would have helped me if my doctors had any knowledge of the existence of such a list to use as a guide to what to do next. They didn't, including my current doctor who HAS celiac disease.
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Mr. gluten-free, That is very sad that your own MD, who has Celiac Disease, does not keep up to date on the management of your shared problem. This is a misperception that this is an easy disease to manage, since it is diet controlled, but as we all know it can be quite a challenge to avoid small amounts of incidental cross contamination. It's a lot more difficult than taking a pill...
Jess
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