the patient celiac

CDGEMM Study: An effort to understand why celiac disease develops (& what can be done to prevent it)

7 comments December 23, 2015

The Celiac Disease Genomic, Environmental, Microbiome, and Metabolomic (CDGEMM) Study, recently launched by the Center for Celiac Research at Mass General Hospital for Children, is a long-term, prospective study aimed at understanding the genetic, microbial (gut bacteria), and environmental processes that trigger the onset of celiac disease—the information gathered by this study will help to explain why celiac disease develops with an ultimate goal to be able to prevent the development of celiac disease and other autoimmune conditions.

The principal investigators, Drs. Maureen Leonard and Alessio Fasano, aim to recruit 500 infants from age 0 to 6 months of age who have a first-degree relative (mother, father, and/or sibling) with celiac disease. According to study materials, the risk of developing celiac disease in those with a first-degree relative with celiac is 8-15% compared with 1% in the general population. Subjects enrolled in the CDGEMM Study will be tested for the presence of celiac disease genes and then followed until age five via blood and stool samples. Parental involvement includes keeping a diary of dietary patterns and antibiotic use during the first year of life, and then completing online questionnaires every six months. Subjects can be enrolled from anywhere in the U.S. There is no travel requirement as blood samples can be collected from local pediatrician's offices/labs and sent in and stool samples are collected at home and mailed in.

To learn more about the CDGEMM study, including FAQs about the study, you can visit the website or email the study coordinators at

For more detailed scientific information about the study, please refer to the following paper:

Leonard, M., Camhi, S., Huedo-Medina, T., Fasano, A. Celiac Disease Genomic, Environmental, Microbiome, and Metabolomic (CDGEMM) Study Design: Approach to the Future of Personalized Prevention of Celiac Disease. Nutrients. 2015. 7: 9325-9336.

This is a rarity, someone talking about prevention. What is even more rare is people that talk about prevention, assisting or supporting in elucidating causes (this includes common names in the field).
I seem to have developed Celiac dz. Prior to it I had reactions to isolated foods, Ritz and Cheerios, but not other wheat products, for years! Now I get the same reaction to all gluten products. Has anyone else noticed such a pattern?
7/19/2016 5:01:29 PM
Hi Abbey,

You’ve brought up a lot of interesting questions that I do not know the answers to.
In my work as a neonatologist I have seen the incidence of newborn babies with milk protein allergies skyrocket (my own daughter included), and although it happens more often in formula babies I have also seen it in exclusively breastfed babies (due to passage from mom to baby via breast milk).

There’s been some emerging info that probiotics may help to prevent food allergies in infants and I’m interested to see what comes from that research.

Anyway, thank you for sharing your thoughts and writing.
7/19/2016 5:00:28 PM
In reply to Vik.
HI Vik,

My whole site is messed up in terms of comments and notifications–that’s why I am getting a new site. Sorry that I am just seeing this comment from you now!

Everything went fine with my oldest daughter’s testing last fall and winter. I am screening my third child a little earlier than the recommended two years because she’s been complaining of recurrent abdominal pains–if she’s positive I’m sure I will post about it.

Hope all is well with you :)

7/19/2016 5:00:07 PM
Abbey C.
Hi there, as a pharmacist I have been increasing coureous about the use of infant formulas.
I know that allergic responses are almost always caused by the immune response to foreign
proteins. Many infant formulas are made with incredibly fine proteins in the mix in order to
enhance digestion of proteins that would otherwise not get digested. I’m just wondering if
such tiny particles are actually able to spark immune responses early on and then cause people
to develop allergies to the foods that contain those proteins or even parts of those proteins.
Allergic responses don’t happen the first exposure to a protein….allergic responses can come about
only after a second exposure, but they can also wait and come about after hundreds of exposures. So if
infants are exposed to such tiny protein particles, I would think there is a greater chance that an
immune response would occur early in life. We see more gluten allergies now, and peanut allergies etc.
Have our formula babies developed allergies to the most basic of foods because we have been too
over zealous to give them fine protein? I would love to see a study done comparing total breast fed
infants to those who have had any formula introduced in their diets. How common is celiac in other
countries where formulas don’t exit? Or have we tried to prevent malnutrition by sending formula into
those countries and now they have similar allergy problems?
7/19/2016 4:59:52 PM
In reply to Wendy.
Hi Wendy,

There are definitely situations when an antibiotic is needed but unfortunately a lot of people are still receiving antibiotics for viral infections. In my opinion the best way to ameliorate the effects of antibiotics is to also take a probiotic. Some doctors are recommending this to their patients and others are not.

Hope this helps.

7/19/2016 4:59:07 PM
If antibiotic use can cause celiac disease and can slow the repair to the small intestine, what is the alternative if antibiotics are needed for an infection?
7/19/2016 4:58:48 PM
Hi Jess, I never received a notification of this post, I was just kind of clicking around to see if there were any new posts, since the notification process can be sketchy, and here was one! That’s a pretty cool study that they’re going to be doing. I don’t know anybody who has celiac and a baby but if I come across any, I will for sure tell them about it. How are the blood tests for your kids turning out? And, happy new year!
7/19/2016 4:58:21 PM
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