the patient celiac

Guest Post: Diary of a Newly Diagnosed Celiac

20 comments September 10, 2014

My name is Shannon. I was diagnosed with Celiac Disease in November of 2013 at the age of 51. I cannot tell you how long that I had Celiac prior to being diagnosed except that it was for many, many years. At this time, I am the only one in my family who has been diagnosed or tested. I have been a nurse since 1993. At that time, Celiac Disease was taught to be a very rare finding in “failure to thrive” children. I returned to school in 1997 to become a Nurse Practitioner. Again, Celiac Disease was a very rare finding and was to be considered in the “failure to thrive” child. I do not even recall learning about this in classes, simply reading a paragraph about this in a textbook at the most. I have had tummy issues since I was a teenager, poor dentition despite very good oral hygiene, multiple canker sores for as long as I can remember, strange illnesses, food intolerances, allergies, intermittent dizziness, anxiety, bouts of depression, herniated disks in my lower back, low vitamin D level, premature ovarian failure, and migraines. I have always felt as if I was treated as a hypochondriac and wasn’t tough enough to handle the “little things” that came my way. I have been to multiple doctors over the years trying to find out what was wrong with me only to walk away feeling like it was all in my head. Since my diagnosis, I have contacted some of my prior physicians to try to educate them as to what was really wrong with me. Some have been receptive and thanked me – others not so much. I am currently not practicing as a Nurse Practitioner for many reasons.

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CeliAction Study Update

1 comments September 02, 2014

celiactionsept

Even when you try your best to stay gluten-free, you never know for sure if something you’ve eaten has been cross-contaminated or mislabeled until after the fact. Most people with celiac disease can relate to accidentally ingesting gluten and then paying the price later on.

Well, there is research currently underway to evaluate if an investigational drug can reduce the symptoms of unintentional exposure to gluten. If proven effective, the drug would offer a new way to manage celiac disease and supplement a gluten-free diet by reducing the risk of gluten’s impact on the body. The best part is that you have to stay on your gluten-free diet in order to participate – no gluten challenge!

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Quietly Spreading Celiac Awareness

18 comments August 22, 2014

Summer is wrapping up and right now I am preparing to send my 3 oldest kids, plus a teenage niece, back to school. Due to some pretty significant life changes I have had to put blogging on the back burner for a while. It's been difficult to do this, as I feel very passionate about spreading Celiac awareness and writing about gluten-related issues. But as I reflect on my summer, I realize that I have had opportunities spread celiac disease awareness, and share information about celiac disease, all summer long. I'll share a few examples with you, and as you read, I am sure you'll find that many of you have had similar experiences.

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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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