Attending a Celiac Disease Patient Conference: Part 2

March 28, 2012 at 4:49 pm 2 comments

Last week, I gave you a wrap-up of the food and people I encountered at the Intestinal Immune-Based Inflammatory Diseases Symposium at Columbia University on March 2-3. While I had a fine time networking and meeting others in the gluten-free community, my main reason for attending was to hear from prominent celiac disease researchers. Needless to say, I was an attentive listener.

The Education

The sessions in the Patient Program covered everything from the basics of celiac disease to the latest research in therapeutics. Here are a few takeaways that perked my ears:

The No. 1 cause of poor response to a gluten-free diet is gluten exposure.

7-30% of patients with celiac disease reported continued symptoms on a gluten-free diet. The reasons can vary, from lactose intolerance to bacterial overgrowth to microscopic colitis. But as it turns out, most people simply aren’t following the gluten-free diet as diligently as they should, or they are ingesting gluten unknowingly. Another factor can be having the wrong diagnosis, so doctors stress the importance of confirming an individual’s celiac diagnosis. Which leads into the second point…

Columbia University Conference - Patient Session

1 room. 2 days. Lots of learning!

Reviewing biopsies is essential.

A few months ago, a study revealed that many gastroenterologists do not take a sufficient number of samples during a small intestinal biopsy. The presenter noted that several factors play a role in making a successful diagnosis: orientation, interpretation, number of biopsies and location. That means if too few biopsies are taken, or if the small intestine hasn’t been examined as thoroughly as it should be, it could affect the diagnosis that the pathologist makes.

Children are not little adults.

A proper celiac diagnosis is critical for child development. A child diagnosed with celiac disease early on will most likely grow to their full potential. A child diagnosed later in life may be permanently stunted from so many years of malabsorption. How exactly does this malabsorption affect their development? Iron deficiency can lead to poor concentration or irritability; calcium deficiency can lead to poor bone calcification and zinc deficiency can lead to growth failure and sexual immaturity.

There’s a lot to learn about the autism/gluten-free connection.

I was eager to hear Columbia’s presentation about the potential benefits of a gluten-free diet for those with autism spectrum disorders (ASD). It was the perfect build up to NFCA’s ADHD and autism webinar that took place the following day. While research thus far has been inconclusive, it appears that the gluten-free diet may help a subset of those with ASD. More research is needed to identify these subgroups and the specific proteins in gluten they’re reacting to.

Discovering risk factors is the No. 1 step to prevention.

There are a number of potential therapies currently being researched, and they each aim to accomplish one of three goals: Reduce exposure to gluten, reduce intestinal permeability or reduce immune activation. However, the question of how to prevent celiac disease remains. As healthcare turns from a model based on treating symptoms to one based on promoting wellness and prevention, we can expect this to be a focus. The answer lies in identifying more of the risk factors, because once researchers know what causes the disease, they can focus on ways to stop it.

– Cheryl

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Attending a Celiac Disease Patient Conference: Part 1 Are You a Mindful Eater?

2 Comments Add your own

  • 1. Nancy Neal  |  March 30, 2012 at 9:27 am

    If 70% of patients have some other reason of still being sick I wish Doctors would believe us when we say she isn’t eating gluten. We wasted money on 3 different dieticians they sent us to assuming “she didn’t get the GF diet”. 3 trips later to mayo at $10,000 or more per trip they found a reason for being sick. In addition to her Celiac her intestine narrows at the end and retracks. A pill takes care of that.

    Reply
  • 2. angela rose maki  |  March 30, 2012 at 9:55 am

    I am interested in more info please send me more info and yes I want to go to the classes. Send ifo here 125 E. Darwin st. Athena oregon 97813.

    Reply

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