the patient celiac

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.

Read Full Article

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.

Read Full Article

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.

Read Full Article

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.

Read Full Article

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

Read Full Article

“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.

Read Full Article

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.

Read Full Article

An Introduction to the CeliAction Study

0 comments April 24, 2014

This is the first of a series of sponsored posts about the Celiaction Study on my page. Since being diagnosed with celiac disease in 2010 I have been patiently waiting for treatment options to augment the GF diet.  Although I eat strictly GF and am safely able to do so in my home, I am at risk of gluten cross-contamination whenever I travel and/or eat outside of my home.  The enzyme being studied has the potential to reduce intestinal damage from gluten cross-contamination, and is also being evaluated as a treatment for those with nonresponsive celiac disease.  All comments and questions will receive a response from a Celiaction Study representative. -Jess

Read Full Article

Dr. Fasano's Gift of Gluten Freedom

0 comments April 05, 2014

Dr. Alessio Fasano, founder and director of the Center for Celiac Research at Massachusetts General Hospital, is one of the world’s leading experts in celiac disease and non-celiac gluten sensitivity. Without his dedication and research, there’s a good chance that many of us with celiac disease would still be walking around undiagnosed and chronically ill. As I have stated before, he is one of my heroes.

I had the fortune to read Dr. Fasano’s brand new book, Gluten Freedom, as I sat at O’Hare airport earlier this week due to a flight delay.   It made for one of the most fascinating flight delay experiences of my life.

Read Full Article

Happy Gluten-Free Spring

0 comments March 22, 2014

I intended for this post to be an overview of a recent review article about celiac disease written by three prominent celiac researchers in the UK, Drs. Mooney, Hadjivassiliou, and Sanders. However, after just doing 7 hours of online continuing medical education modules, my heart and brain are not cooperating, and I am also ready to throw my laptop out the window. So I'm going to shorten my post by quite a bit and save the life of my computer...

Below are the “take home” messages of the article, as well as some interesting comments on the original article that were published by another physician. Please bear in mind that I am “translating” from medical terminology to lay terminology, so if anything seems confusing, just post a comment and I will clarify.

Read Full Article
Copyright Jessica Madden All rights reserved