Recap of Running the NYC Marathon for Team Gluten-Free

I ran in the NYC marathon this past Sunday as part of the Celiac Disease Foundation’s Team Gluten-Free  and it was an incredible experience. It was a beautiful, windy and cool day in New York, and I felt a wide range of emotions as I ran through all 5 boroughs of the city.  As I ran the 26.2 miles I was able to reflect on my life since my celiac diagnosis in 2010, all that I have learned since then, and all of the incredible people who I have met as a result of having celiac disease.

The CeliAction Study is Continuing to Recruit Subjects with Celiac Disease

I've recently been notified that the CeliAction Study is continuing to recruit subjects with celiac disease. ALV003 (an enzyme) is being investigated 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. I just returned to "real life" after running the NYC marathon for Team Gluten-Free and I look forward to sharing my experience with all of you soon in a separate post. Thank you for reading!  -Jess

Celiac Disease and Muscular Pain, Weakness and Atrophy by Irish Heart

Hi all! It's a super busy week for me as I wrap up work and prepare to travel to New York to represent all of us with celiac disease in the NYC marathon on Sunday November 2nd as a member of the Celiac Disease Foundation's Team Gluten-Free.  I will be back to posting soon, but in the meantime wanted to re-post this excellent article about celiac disease and muscular issues that was written by my dear friend Irish Heart (shared with her permission). Like Irish Heart, I have suffered from neurological and musculoskeletal symptoms from my celiac diagnosis, which have, fortunately, improved with time. Hope you're all doing well!  -Jess

Potential Future Celiac Treatments

I think we all know that the only current treatment for celiac disease is the gluten-free diet. Most days I think that it’s awesome that the only “thing” I have to do to treat my autoimmune disease is watch what I eat. I am grateful that I don’t have to take any pills, do self-injections, etc. But some days, especially when I travel or have to eat outside of my gluten-free home for an extended period of time, I don’t feel quite so enthusiastic about having celiac disease. I fear getting “glutened” when I am away from home. And it takes my body a good 2 to 4 weeks to totally recover every time I am accidentally exposed to gluten.

Introducing Gluten to the Baby At-Risk for Celiac Disease (2014 update)

My youngest daughter, Claire, who I had in 2012, was my first baby born after my celiac diagnosis. I really struggled during her infancy to figure out if/when I should ever feed her gluten, as I wanted to do everything possible to prevent her from developing this disease. Based on all of the available research at the time, I made the decision to introduce her to small amounts of gluten when she was about 5 months old, and I breastfed her as long as I could (see my previous post for more details). I also freaked out a bit, as I was pretty sure that I had introduced gluten at the “wrong” times for my 3 oldest kids, beyond the 4-6 month “window” that had been supported by the literature, and I had not even been breastfeeding when my 2nd child was given gluten for the first time.

#100

When I started this page in 2012, I never anticipated that I'd make it to the 100 post mark, but here I am. I am going to treat this post as a brief update. My disclaimer is that this is a very personal post, and has very little to do with with celiac disease, so if you follow my page for celiac and/or non-celiac gluten sensitivity information only, then you should probably stop reading now...

Guest Post: Diary of a Newly Diagnosed Celiac

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.

CeliAction Study Update

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!

Quietly Spreading Celiac Awareness

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.

CeliAction Study Extension

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