the patient celiac

New Year and New Celiac Info...

15 comments January 03, 2015

Happy New Year to all of you!

This post will focus on updated information about adult celiac disease that was presented at the Celiac Disease preceptorship that I attended at the University of Chicago in December 2014. Prior to the hustle and bustle of the holidays I was able to write a bit about what I learned about pediatric celiac disease (see link). I hope to share more information from the preceptorship in upcoming months, as time allows…

Dr. Carol Semrad, a celiac specialist from the Celiac Disease Center at the University of Chicago, gave a presentation entitled “Celiac Disease: The Adult Perspective” on December 4th. Here are some of the “highlights” from her excellent and comprehensive lecture.

75% of patients with celiac disease are diagnosed during the adult years. Many have only mild, intermittent gastrointestinal (GI) symptoms that they may think are "normal."  Many adults are actually overweight/obese at the time of diagnosis. Others may have other problems (with either mild or absent GI symptoms) such as low bone mineral density, iron deficiency anemia, and hepatitis.

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Update on Pediatric Celiac Disease from the University of Chicago 12/2014

31 comments December 11, 2014

I've been so busy learning new information about celiac disease and non celiac-gluten sensitivity that I haven't had a chance to post for a while. I was fortunate to be one of 30 practitioners selected for the 2014 Preceptorship Program at the University of Chicago Celiac Disease Center, which took place 12/4-12/5. We had an intense 2 days filled with lectures on topics ranging from "The Pathology of Celiac Disease" to "Celiac Disease and the Skin" to "Celiac Disease and Developmental Disorders." I was also able to spend time with Dr. Guandalini in the pediatric celiac clinic at the University of Chicago. Overall it was a great experience and I learned a TON about this disease which I hope to be able to share in upcoming months with other doctors, nurses, patients, friends and family, and all of you.

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Fall 2014 Celiac Disease Research Round-Up

11 comments November 21, 2014

I haven’t done a “journal club” type post for a while on here, and there have been some really interesting studies published in the last 4-6 weeks, so here goes…

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Recap of Running the NYC Marathon for Team Gluten-Free

10 comments November 08, 2014

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.

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The CeliAction Study is Continuing to Recruit Subjects with Celiac Disease

1 comments November 05, 2014

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

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

10 comments October 30, 2014

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

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Potential Future Celiac Treatments

3 comments October 21, 2014

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.

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

12 comments October 06, 2014

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.

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#100

12 comments September 21, 2014

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...

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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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