the patient celiac

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!


A few fun facts about celiac and babies include that the earliest that an infant can develop signs/symptoms of celiac disease is around the 8-9-month mark (per Dr. Guandalini at the University of Chicago Celiac Center) and that long ago infants and children with celiac disease were known as “banana babies” because they were fed diets that consisted of only bananas to survive (this was before it was known that the symptoms were cause by the ingestion of gluten). For more info about this topic and the history of celiac disease please refer to this 2017 article from NPR.


I was never a banana baby as I was diagnosed with celiac disease between my 3rd and 4th pregnancies, when I was 32 years old.  Even though I did not know that I had celiac disease when I was pregnant with #3, my body definitely did, as all I craved were fruits, veggies, and Rice Chex cereal, which was one of the first mainstream breakfast cereals to be labeled as being gluten free. I actually remember reading the words “gluten free” on the label and being so thankful that I did not have to avoid gluten! Little did I know what was in store for me...

 
There is mounting evidence that celiac disease can lead to infertility, miscarriages, and adverse pregnancy outcomes, including prematurity.  Years ago I came across a research study in which investigators discovered that the same TTG antibodies which are abnormally elevated in celiac disease can attack the placenta. One of my first blog posts was actually about the effects of celiac disease on pregnancy as I found the topic to be fascinating and under appreciated at the time in the medical community. My previous post from 2012 with references about celiac disease and pregnancy can be found here.

 
The relationship between celiac disease and neonatal outcomes is not as clear cut as the info about perinatal outcomes, and, quite frankly, there has been a lot of conflicting information in the literature. When I started to study celiac disease in 2012, it was recommended that parents introduce gluten to their babies between a “critical window” of 4-6 months of age, as it was believed that this would promote gluten tolerance for life.  Later research studies debunked this and the optimal timing of the introduction of gluten to babies is a moving target. 


Some other hypotheses that I have come across in regards to celiac and babies include the following:
 

  • The season of conception and/or month of birth predisposes a baby to have a higher risk of celiac (not true)
 
  • Birth by C-section leads to an increased risk of celiac (not true)
 
  • Breastfeeding decreases the risk of celiac disease (probably-but it is unknown if it is the duration of breastfeeding or other factors, such as the presence of protective antibodies to gluten in the mothers’ milk, that make the difference). 
 
  • The timing of a baby’s first exposure to gluten determines whether or not he or she will eventually develop celiac (probably not-see above)
 
  • Viral illnesses during infancy can lead to an increased risk (yes)

As a result of some of this information (much of which we now know is false) I have spent way too much time to worrying that I have put my four kids at risk for celiac disease. My oldest, Grace, was born in the” wrong” season and I was not GF when I was pregnant with her. I was also not GF during my second pregnancy, and I only breastfed my 2nd, Tommy, for a few months after birth.  Although I breastfed Gabby, my 3rd, for a long time, I introduced gluten to her way too early (just shy of 4 months) and probably gave her too much. I received antibiotics during my labor with my 4th, Claire, wiping out the “good bacteria” that I was supposed to transfer to her during birth via sharing my microbiome. So, as you can see, my kids are all doomed!
 

I do not want other mothers to blame themselves and, with time, I hope we will have better information in regards to both risk factors and the prevention of celiac disease. Fortunately, there are a few large scale studies that are examining factors in infancy and childhood that have an effect on the later development of celiac disease. These include the CDGEMM study which is currently enrolling infants at Mass General Hospital in Boston, and the PreventCD and PROFICEL studies which are in Europe.  We have also gained a better understanding of celiac disease autoimmunity from the TEDDY study of diabetes mellitus (DM), and we now know that kids with Type 1 DM have a higher than average risk of developing celiac disease.

 
After almost a decade of living with celiac disease, and raising 4 kids who are genetically at risk for its development, my best advice to my fellow moms is the following:
 
  1. Try to relax and not worry and blame yourself (I know, this is much easier said than done!)
  2. Try to breastfeed, but do not sacrifice your well-being in the process of trying to do so.  We are fortunate to have safe and nutritious alternatives to breast milk including formula and donor breast milk.
  3. Do your best to feed your family healthy meals and snacks, but realize that there are going to be times that Chick Fil A and frozen pizzas become necessities. And that everywhere your kids go they will be offered and given candy!
  4. Be vigilant for the development of symptoms and follow your instincts in regards to their health.  I have all 4 of my children screened with a celiac blood panel every 2 years.  Since my kids are gluten-light, I have their testing done in January, after their weeks long holiday binges of gluten-filled Christmas cookies, pies, etc. 
  5. Remember that they won’t be babies for long, and as they get older you'll have even more stuff to worry about!
 
Here is what has happened to my own babies over the last 6 years: 




Thank you and Happy Celiac Disease Awareness Month to all of you!

Also, please continue to reach out via email if you are interested in arranging celiac phone consults with me for a nominal fee: thepatientceliac@gmail.com.  It has been a privilege to be able to meet and help so many of you by phone over the last year and thank you to all who have referred others to me. 

 

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