the patient celiac

CeliAction Study Extension

0 comments August 16, 2014

I sincerely hope to be back to blogging soon. In the meantime I wanted to let you all know that the CeliAction Study has been extended through September 2014, so it is not too late to participate. All questions and comments on this post will receive responses from a CeliAction Study representative. I hope you are all having a great summer!  -Jess

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Going Running...and I Need Your Help!

2 comments August 08, 2014

I am excited to announce that I will be running this year’s New York City Marathon as a member of the Celiac Disease Foundation’s “Team Gluten-Free.”  Training has been going well and now that I have hit double-digit mileage for my long runs I feel comfortable sharing this with all of you. I vowed to never run another marathon after getting injured in 2013, but I could not pass up the opportunity to run and raise funds for celiac disease. My five teammates and I have each committed to raise $3500 for celiac disease education, research, and advocacy while training for the marathon on November 2nd.

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Celiac Disease: 10 Things for Doctors and Patients to Know

11 comments July 25, 2014

I came across this list on PubMed the other day, and although I posted it on Facebook, I thought it might be worth sharing on here for everyone else. It comes from an abstract titled “Celiac Disease: Ten Things that Every Gastroenterologist Should Know.” It was written by Drs. A. Oxentenko and J. Murray (from the Mayo Clinic) and published online in the journal “Clinical Gastroenterology and Hepatology" on July 19, 2014. I usually don’t like "Top 10" lists, but it has some good information for both gastroenterologists and their patients. Just for clarification, the quoted statements come directly from the publication and the words in italics are mine.

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Celiac Disease Autoimmunity

3 comments July 20, 2014

I first came across the term “celiac disease autoimmunity” a few weeks ago as I read summaries of the article “Risk of Pediatric Celiac Disease According to HLA Haplotype and Country” that was published in the July 3, 2014 issue of the New England Journal of Medicine (NEJM).

Based on my reading and interpretation of the article, it seems that celiac disease autoimmunity is interchangeable with the more commonly used term “potential celiac disease.” Both are used to describe cases in which people have abnormally high levels of celiac antibodies (TTG IgA)  in their blood but their small intestinal biopsies do not show changes consistent with celiac disease. In other words, there is an autoimmune response to gluten that has yet to cause destruction to the villi of the small intestine. For the sake of this study, the subjects had to have abnormally high TTG IgA levels on 2 separate occasions, at least 3 months apart, to be labeled as having celiac disease autoimmunity.

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Strawberry Almond Flour Blender Cake

11 comments July 15, 2014

Now that I've started to train for another marathon I've had to really focus on eating enough calories everyday. Thankfully, it's strawberry season in my part of the world, and I recently began to make this super easy, gluten-free cake recipe to use up some of our fresh picked strawberries (I adapted it slightly from a recipe that I found on the website roostblog.com). I have not taken a photo of it to post because I keep forgetting to do so, but it looks like an ordinary 8 inch cake when it's baked.

Strawberry Almond Flour Blender Cake

 

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It's not too late to enroll in the CeliAction Study

1 comments July 08, 2014

I recently learned that the CeliAction Study will be enrolling subjects with celiac disease through the end of July 2014. The ALV003 enzyme is being studied as a treatment to augment the gluten-free diet by providing protection from gluten cross-contamination. It is also being researched as a treatment for nonresponsive celiac disease.  All questions about this post will be answered by a CeliAction Study representative. Thank you for reading!  -Jess

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Hope for a Less Challenging "Gluten Challenge"

30 comments July 06, 2014

The current “gold standard” tests for celiac disease include testing for celiac antibodies in patients’ blood and performing an endoscopy to obtain small bowel biopsies. In order for these tests to be accurate, one has to be eating gluten up until the time of testing.  If a patient is already on the gluten-free diet when these tests are done, the diagnosis of celiac disease can easily be missed.

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Updated Guidelines on the Diagnosis and Management of Adult Celiac Disease

0 comments June 27, 2014

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.

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The Scope is Clear (At Least for Now)

0 comments June 17, 2014

clairebear1

Claire is the youngest of our four children and was the first born after my diagnosis with celiac disease. She was a very healthy baby and I can't recall her having any health issues during her infancy other than one or two mild colds and a touch of constipation.  Then, when she was about a 13 months old she began to have very high fevers, up to 104.5-105 F, that would come out of the blue and last between 2 and 5 days.  During these fevers she would have no other signs or symptoms of infection (i.e. rashes, vomiting, cough), she looked good, and, for the most part, her blood and other lab tests were normal. She had 9 or 10 total episodes of fever without a source during her 2nd year of life. Celiac disease was always in the back of my mind but I could not link her fevers with eating gluten. Although our home is 100% gluten-free, my kids do eat gluten outside of the home, in part so that I can keep tabs on whether or not they develop symptoms after eating it.

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Update on the CeliAction Study

0 comments June 13, 2014

The CeliAction Study will be continuing to enroll subjects with celiac disease through this summer. This medication has the potential to help many of us with celiac disease. All questions and comments will be answered by a CeliAction study representative, as this is a sponsored post. Thank you for reading!   -Jess

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