the patient celiac

I Forgot that May is Celiac Awareness Month!

0 comments May 10, 2019

For the first time in 10 years I forgot that May is Celiac Awareness Month!

If you would have told me 5 years ago that this was going to happen I would not have believed you, as I was at the height of my celiac advocacy efforts.

I became a celiac advocate after my celiac diagnosis as I was appalled by my own lack of knowledge about the disease, as well as the huge knowledge gaps in the medical community. I figured that if other physicians and I were not well versed in the symptoms and diagnosis of celiac disease, that the general population was probably in the same boat.

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Celiac Disease and Babies

0 comments May 02, 2018

I’ve had babies on my mind lately as I have just opened a neonatology home visiting service called Primrose Newborn Care--this is why I have been away from my celiac website and social media pages for so long! I’ve also had celiac disease on my mind as May is Celiac Disease Awareness Month and I’ve yet to do anything to recognize it. So, I figured that it’s a good time to write about two of my favorite topics!


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What does it mean if I have a celiac gene?

0 comments September 30, 2017

What does it mean if I have one of the celiac genes?


Does it mean that I definitely have celiac disease? No


Does it mean that I will eventually develop celiac disease? Not necessarily


Does it mean that I need to go gluten free? No


I’ve been asked about genetic testing for celiac disease more times than I can count over the last five years, so I finally decided to make time to write about it!


The two genes associated with celiac disease are HLA-DQ2 and HLA-DQ8. Over 95% of people with celiac disease have one or two copies of either celiac gene.

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Participants Needed for Study of Emotional Aspects of Celiac Disease-CLOSED!

0 comments September 25, 2017

Did it take five years (or more) following the onset of symptoms before you received your diagnosis of celiac disease? Are you over the age of 25 and willing to share your experience? 


My colleague, Heidi Maxwell, who is a doctoral student of clinical psychology, is seeking participants for a study about the emotional sequelae associated with the experience of severe unexplained symptoms of celiac disease over an extended period of time.  Please see the full post for details about how to participate.

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Seminar in Celiac Disease Overview

0 comments August 17, 2017

I was so pleased to learn that Celiac Disease is the topic of a seminar in the Lancet, which is one of the world’s leading medical journals, because thousands of doctors will read it and be able to learn about celiac disease from it. It was written by Drs. Benjamin Lebwohl (U.S.), David Sanders (U.K.), and Peter Green (U.S.). It included some important points that I thought were worth sharing.

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Celiac Q&A

0 comments June 18, 2017

I was recently checking my blog email account and I realized that I get a lot of messages from readers (which I love) and that many of the questions have similar themes. Here are examples of some of the most common questions that I get from readers, along with my attempts to answer them.

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The Alphabet Soup of Celiac Blood Testing

0 comments May 09, 2017

What does TTG mean?

TTG is the abbreviation for tissue transglutaminase, an enzyme that is present in the intestines, as well as in other parts of the body. Enzymes are involved in the bodies’ biochemical reactions.

In celiac disease the immune system produces antibodies that attack TTG when gluten is eaten—this is an “autoimmune” response as the antibodies that are made attack one’s own tissues (differs significantly from the immune response in a food allergy in which antibodies are produced against specific food proteins).  Anti-TTG antibody levels are elevated in active, untreated celiac disease.

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Celiac Disease in Adolescents

0 comments April 11, 2017

I came across a disturbing statistic that only about 1/3 of teenagers with celiac disease actually comply with the gluten-free diet.  This led me to investigate what is known about celiac disease and adolescents.  I learned that there has not been much research in this area until recently, as the majority of studies of celiac disease have involved either adults (most) or young children.

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The day I forgot to be my own celiac advocate

0 comments January 06, 2017

My family and I moved back to Cleveland recently and I had my first appointment with my new primary care physician a few days ago. Since it was my first time seeing her we reviewed my past medical history, surgeries, allergies, family history, medications, etc.  prior to my exam. After examining me she sent my prescription refills to the pharmacy, and then printed out a requisition slip for me to take the lab to have my blood drawn for cholesterol levels, a basic metabolic panel, and complete blood count (all normal baseline labs for someone of my age--almost 40!!!) as well as thyroid function labs since I have hypothyroidism from Hashimoto's disease.

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Pediatric Celiac Disease Updates

0 comments November 15, 2016

I came across on article on Medscape, a reputable site for medical information, a few days ago that scared me a bit. The title is “Gluten-Free Diet Does Not Repair Intestinal Damage in Some Children with Celiac Disease” and it discusses a recent study by Dr. Margaret Leonard and her team at the celiac center at Massachusetts General Hospital showing that nearly 20% of children with celiac disease continue to show signs of intestinal damage on biopsies after they’ve been on the gluten-free diet for quite a while (more than 12 months). In many cases the pediatric subjects with persistent damage had experienced a normalization of their celiac antibody levels and no longer had symptoms. The long term impact of the delayed healing is unclear, but the authors speculate that ongoing inflammation may effect physical and cognitive development as well as increase the risk of lymphoma, low bone mineral density, and/or fractures.

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