the patient celiac

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

celiaction

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Easy Gluten-Free Strawberry Rhubarb Cobbler Recipe

0 comments June 11, 2014

ID-10083685

With our garden blooming, as well as our summer Community Supported Agriculture (CSA) share and local farmers' markets starting up, we've had a steady supply of rhubarb over the last few weeks. So I've been making cobbler. I adapted my recipe from one that I found on the website "The Fountain Avenue Kitchen."

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Frequency of Screening for Celiac Disease in Children with Siblings and/or Parents with Celiac Disea

0 comments May 29, 2014

I had the opportunity to moderate a discussion on celiac disease in children during my local celiac support group meeting last week.  One of the topics that we discussed was how often the siblings (or children) of those with celiac disease need to be screened. Research has shown that between 5 to 10% of first degree relatives of those with celiac disease will eventually develop it, and there is consensus that all at-risk children need to be tested at least once.

I have opted to have all of my kids screened with celiac antibody panels starting at age 4, in the absence of symptoms, and then we’ve planned on having them re-screened every 2 to 3 years, as we know that celiac disease can develop at any time during life. That being said, as my group discussion continued, I felt sort of dumb, as I was unable to recall where I had heard the advice about repeated screening of at-risk children. And I started to worry that perhaps I am having my kids tested too often...if you are new to my blog, you will learn that I get a bit neurotic about things from time to time.

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The CeliAction Study Continues to Seek Subjects with Celiac Disease

0 comments May 21, 2014

This is the 3rd of four sponsored posts on my page about the CeliAction Study.  The CeliAction Study is seeking people with celiac disease to enroll in their study of ALV003, a drug to prevent intestinal damage and symptoms from accidental gluten cross-contamination. All comments and questions will be replied to by a CeliAction study representative. Thank you and I hope you are all well. -Jess 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.

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Celiac Books and a Toolkit

0 comments May 19, 2014

Celiac Awareness Month is already halfway over, which seems mind boggling to me, as I feel like May just began. Since May started we've celebrated family birthdays, a First Communion, Mother's Day, and I ran as part of a 200 mile relay from just south of Boston to Cape Cod. I've also worked similar hours to when I was in my medical training.  I am ready for things to slow down a little and cannot wait for summer to arrive to spend more time with my kids, travel, go to the beach, etc.

During this past month I have also come across a few resources and books that I thought might be helpful to some of you.

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Gluten-Related Neurologic Symptoms in Children

0 comments May 16, 2014

There is a well-established relationship between celiac disease (and non-celiac gluten sensitivity) and the development of neurologic problems in adults.   According to Dr. Marios Hadjivassiliou, a neurologist in the UK who is one of the world’s experts in this area, up to 50% of adults with newly diagnosed celiac disease have signs or symptoms of neurological problems. I have personally experienced a peripheral neuropathy (nerve damage) as a result of celiac disease and it was my neuropathy that prompted me to start writing about my experiences in 2012 (see link).  If you are interested in learning more about gluten-related neurologic problems in adults, I urge you to read Christine Boyd’s article “Gluten and Your Brain” in the April/May 2014 issue of Living Without Magazine. I was fortunate to be interviewed for Ms. Boyd’s story, and the article contains a wealth of information from experts, including Drs. Fasano and Hadjivassiliou.

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The CeliAction Study

0 comments May 06, 2014

A significant percentage of patients with celiac disease continue to have gastrointestinal symptoms and/or small bowel inflammation while on the gluten-free diet. The Celiaction Study is recruiting subjects with celiac disease to test a medication that will help improve symptoms of celiac patients who are already on the gluten-free diet. Since this is a sponsored post, all questions will be answered by a CeliAction Study representative. Thank you!  -Jess

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“Gluten intolerance” can actually be subclinical celiac disease

0 comments April 30, 2014

glutenintolerant

I think most of us have met people who have symptoms of celiac disease, but when tested, are told that their celiac antibody blood tests and biopsy results are negative (normal). Some of these people are labeled “gluten intolerant” or “gluten sensitive” by their doctors, others are told they may have “early” celiac disease, or “pre” celiac disease, and the rest are told that they have nothing wrong and are often advised to continue to eat gluten.  Many continue to eat gluten and find themselves getting sicker and sicker, with an improvement or disappearance of symptoms when they go gluten-free.  Then, when they go gluten-free, since they are “gluten intolerant” as opposed to having celiac disease, it is unclear how closely they need to be followed for vitamin deficiencies, the development of additional autoimmune disorders, and other problems that are associated with long-standing celiac disease.

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My Kids are Bakery-Deprived

0 comments April 25, 2014

We just returned from a spending a week in Florida to celebrate Easter with my grandparents. As we were flying back I asked my 3 oldest kids what their favorite part of the trip was, expecting that the one thing they'd agree on would be "playing at the beach," "exploring the park with four playgrounds," or "going to the Easter egg scramble."  Instead, they all agreed that their favorite experience was actually going to a bakery. On our very first day in Florida we went to a gluten-free restaurant and bakery in Melbourne Beach called The Bald Strawberry. Since it was just a few days before Easter, the glass display cases at The Bald Strawberry were filled with cupcakes, and cookies, tortes, and macaroons, and we let each of the kids pick out a treat to take home.

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