the patient celiac

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

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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.

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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.

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Necrotizing enterocolitis: a devastating digestive disease of premature babies

0 comments March 05, 2014

I do not see celiac disease in my practice as a neonatologist as most of my patients are born prematurely, weigh less than 5 pounds at birth, and have never eaten wheat.  That being said, I have taken care of several babies with an intestinal condition that is much worse than celiac disease. It is called necrotizing enterocolitis (or NEC) and approximately 5-10% of the smallest premature infants develop it after birth. The incidence in the neonatal population overall is 1-2%, similar the rates of celiac disease in the adult population.

Babies with NEC develop inflammation in the lining of their intestines which can lead to injury and death of segments of the small and large intestines. In the worst cases of NEC, perforations (holes) develop in the intestines and portions of the intestine have to be surgically removed. Clinical signs of NEC include abdominal distension (babies’ bellies often become large and hard like a rock), bloody stools, delayed digestion, respiratory distress, and shock.  Once NEC develops, it can progress rapidly, and 25 to 30% of babies who develop NEC die. A healthy premature infant can develop NEC and be dead within 8 to 12 hours.

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Notes from the 2014 International Nutrition and Growth Conference in Barcelona

0 comments February 19, 2014

I was fortunate to be able to escape the "polar vortex" 3 weeks ago and travel to sunny Barcelona, Spain for the 2nd International Conference on Nutrition and Growth, a 3-day gathering of doctors, researchers, nutritionists, nurses, and other specialists from around the world. During this conference I learned about the most recent research regarding neonatal and pediatric nutrition, breastfeeding, probiotics, obesity, maternal diet and nutrient supplementation during pregnancy, epigenetics, and the microbiome. I was also given a fair amount of free time to explore one of the most beautiful cities in the world. As an added bonus I was able to eat GF like a queen throughout the city (there will be an upcoming post about this). If it was not for my family, job, and other "real life" things I am not sure that I would ever have left Barcelona!

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Celiac Disease Can be a Pain in the Joint

0 comments January 27, 2014

Unexplained joint pains (arthralgias) were one of the main symptoms that I dealt with prior to my celiac diagnosis. Throughout my twenties I had pain and stiffness in my fingers, knees and ankles that would come and go with no apparent explanation.  I ran track for part of high school and continued to run for fitness during college, but shortly after graduating had to stop running for a long time due to my joint issues. I was evaluated over and over again for lupus, rheumatoid arthritis, Lyme Disease, etc. but there were never any answers for why I had developed the pains. So I learned to live with them and I stopped running. Fortunately, since going GF in 2010 my arthralgias have almost entirely disappeared, and I was able to resume running again.

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Celiac Disease in Children (Summary of January 2014 Review Article)

0 comments January 11, 2014

Drs. Guandalini and Assiri have written a summary of pediatric celiac disease that was published in the online edition of the journal JAMA Pediatrics last week. In this post I will share some of the highlights of their review article. Although the overall prevalence of celiac disease is 1% in the pediatric population, only 10-15% of children with celiac disease have been diagnosed and treated. The celiac genes (HLA-DQ2 and DQ8) contribute 40% of the risk of developing celiac. Environmental risk factors for celiac disease include infant feeding patterns, early infections, gut microbiota, and the amount and timing of initial gluten exposure.

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Mast Cell Activation Syndrome Madness

0 comments January 04, 2014

At this time last year I had never heard of mast cell activation syndrome (MCAS) and the first time that I heard the name I thought that it was a “made up” disease. Since then I have come to realize that it is a real diagnosis and I have learned a ton about it, including the following:

  • MCAS is a newly recognized disease of the innate immune system (our bodies’ first line of defense against bacteria, viruses, parasites, and other invaders).
  • Women make up the majority of patients with MCAS.
  • Symptoms are caused by having too much histamine in one's system and can affect almost any part of the body (see comprehensive list below).
  • MCAS is very common (there is pilot data showing that 17% of Germans are affected to some degree).
  • It is acquired during life; no one is born with MCAS and it is not yet known why it develops in certain people.
I am one of the unlucky people to have acquired MCAS during my journey through life. Although I really wish that I didn’t have it, I am sharing my story in hopes that I can help others.

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December Book Review, Recipes, and Ramblings

0 comments December 10, 2013

If you are one of my readers who visits this page to be able to learn about newly published research studies about celiac disease and gluten sensitivity, this is not the post for you. I am not going to write about any research this time. Instead, this is going to be a rambling post written by a chronically sleep-deprived, working mother 2 weeks before Christmas! If you don’t like the sounds of it, please stop reading now!

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If Research Looks Too Good to Be True, it Probably is…

0 comments December 04, 2013

I recently learned that bovine colostrum (the milk produced by cows in the first few days postpartum) was discussed during a large online presentation for those with gluten-related disorders.  As some of you may know, I am a huge advocate of breastfeeding and I think that it is very important for newborn babies to get their own mothers’ colostrum, if possible, because it is full of antibodies and other immune proteins, pre- and probiotics, and it promotes optimal functioning of babies’ digestive tracts.

However, I was unfamiliar with any benefits of bovine colostrum for humans, and in doing a search of the literature on Pubmed.gov, I was unable to come up with any scientific references regarding the use of bovine colostrum for celiac disease or non-celiac gluten sensitivity. All that I could find regarding bovine colostrum and “leaky gut” in humans was one study showing that bovine colostrum is associated with an increase in intestinal permeability in runners, and another showing that it may decrease intestinal permeability in athletes.

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