the patient celiac

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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You can run from celiac disease but you can’t hide…

6 comments September 28, 2016

I've been off the radar the past few months because we've been transitioning AGAIN. We moved from Boston back to my hometown of Cleveland in August, and since that time I've been focused on settling into our new home, getting all four of our kiddos adapted to their new school, trying to maintain my sanity, etc. Just like last summer, I ended up taking a much-needed break from reading scientific journals about celiac disease, reading others'; blogs, writing articles, etc. Celiac disease has on my back burner and I sort of thought it was going to stay there...

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Revisiting the Past

17 comments July 08, 2016

I’ve worked really hard over the last few years to try not to revisit my past and live in the present moment. I’ve also been recently working on staying off of my phone, the internet, and social media so that I can focus on my kids and family this summer. I failed at both of these things yesterday pretty miserably…

I am a member of a physician-only online forum and I came across a recent discussion regarding MDs’ sentiments about how to handle patients who come into their offices with “laundry lists” of complaints, i.e. the patient who complains of feeling overall unwell with problems such as headaches AND fatigue AND body aches AND abdominal pains. Although some were empathetic to patients like this, the majority of doctors who commented were rather critical. The general themes of their comments were that patients like this, with numerous vague complaints and problems, are usually “crazy,” their symptoms are likely all in their heads, and that their symptoms best be treated with some combination of therapy, antidepressants and recommendations for exercise and weight loss.

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