Tag Archives: gluten free children

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Pediatric Celiac Disease Updates

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.

I think we all know that the currently accepted treatment for celiac disease is to stay on a strict gluten-free diet for life. However, the management of celiac disease requires more than just eating gluten-free, and a lot of follow-up.

A group of celiac disease experts, including Drs. Fasano and Guandalini, recently drafted updated guidelines for the management of pediatric celiac disease, which were published in the journal Pediatrics a few months ago. All recommendations are based on scientific evidence as well as their experiences taking care of patients with celiac disease. Below is a quick summary of their recommendations (please see reference at end of article for full details):

Bone Health: Celiac Disease can lead to problems such as bone pain, low bone mineral density and unexplained fractures. Fortunately, initiation of a gluten-free diet restores bone mass to normal density in almost all children and adolescents.

-all children should be screened for vitamin D deficiency at the time of diagnosis
-parents should be counseled on age-appropriate intake of both calcium and vitamin D
-children who do not adhere to the gluten-free diet should have bone density testing
performed

Hematologic (Blood) Problems: Iron deficiency anemia is the most common.

-all children need to be screened for iron deficiency anemia at the time of diagnosis and
repeat complete blood counts (CBCs) should be done at follow-up visits
-children with celiac do not need to be routinely screened for folate deficiency

Endocrine-Associated (Hormonal) Problems: Autoimmune thyroid disease, type 1 diabetes, Addison disease, parathyroid disorders, and growth hormone deficiency are all associated with celiac disease.

-all children should be screened for thyroid disease at the time of celiac diagnosis AND
at their follow-up visits
-parents should be counseled on the signs of symptoms of type 1 diabetes, but children
do not need to be tested for diabetes unless symptoms develop

Liver Function: Celiac disease can be associated with elevated liver enzymes and hepatitis. Many patients with celiac disease do not respond to the Hepatitis B vaccine series.

-children with celiac disease should have their liver enzymes checked at the time of diagnosis
-Hepatitis B immunization status should be checked at the time of celiac diagnosis

Nutritional Problems and Celiac Disease: Nutritional problems can stem from both intestinal inflammation as well as of a result of the gluten-free diet.

-all children with celiac disease need to have their height, weight, and body mass index
(BMI) monitored
-all should be referred to an experienced registered dietician who is knowledgeable
celiac disease (not all are!)
-multivitamins should be offered at the time of diagnosis

Testing and Monitoring for Celiac:

-the initial screening tests for celiac should include a quantitative IgA and IgA anti-tissue
transglutaminase (tTG). These tests should also be followed after diagnosis to monitor
compliance with the gluten-free diet.
-10% of celiac cases are seronegative, which means that the celiac antibodies are falsely negative even though celiac disease is present!
-celiac genetic testing can be helpful in trying to figure out whether to pursue a gluten challenge and further testing in kids who have been put on the gluten-free diet prior to testing.

I wish a Happy Thanksgiving to all who celebrate and I hope to reply back to your emails and Facebook messages as time permits over the next few weeks.  I am so grateful for your readership. enthusiasm, and for motivating me to continue to keep up this page. I hope that you are all able to enjoy quality time with your loved ones as the holidays approach.  We moved back to my hometown of Cleveland a few months ago and I’ll be hosting my side of the family for Thanksgiving for the first time in about 9 years! Please feel free to share your favorite GF Thanksgiving recipes in the comments section if you’d like as I’m a bit nervous about cooking for so many people!

References

Leonard, M., Weir, D., DeGroote, M., et al. Value of IgA tTG in Predicting Mucosal Recovery in Children with Celiac Disease on a Gluten Free Diet. Journal of Pediatric Gastroenterology and Nutrition. Published online Nov 3, 2016.

Snyder, J., Butzner, M., DeFelice, A., Fasano, A., Guandalini, S., Liu, E, Newton, K. Evidence-Informed Expert Recommendations for the Management of Celiac Disease in Children. Pediatrics. 138(3). September 2016.

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Yes, it is “Safe” to Raise Non Celiac Kids Gluten Free

I’ve realized that I have not written for almost a week and I think I am okay with this. When I started this blog two months ago, I anticipated being able to post about once a week, so I think I am on track. Between working full-time, running, and trying to squeeze in some sleep, the main reason  that I have not had time is that I have four small children. I am trying my best to cherish this phase of our family life, as I know that someday I will have four teenagers at once!

None of my kids have Celiac Disease, but I consider them all to be at high risk for its development. Although I was diagnosed when I was 33, I have probably had Celiac Disease since early childhood. My mother also has it, and interestingly enough, was diagnosed after I was. Through conversations with aunts and uncles, it seems there is some “gluten sensitivity” in my deceased dad’s family. Although my husband, Tom, does not have Celiac, we do know that he is HLA-DQ2 positive, as he was tested by his GI doctor.  He has both an aunt and cousin with Celiac Disease as well. If none of my children go on to develop Celiac Disease, I will be truly amazed!

We started off my Celiac journey with a shared kitchen. I read up on this as much as I could after diagnosis, and I had my own “gluten free” cabinet, pasta strainer and pasta pot, cooking utensils, baking dish, etc. I also kept separate GF butter, peanut butter, and other condiments to avoid cross contamination.  I always put my items on a piece of aluminum foil when toasting because I was never able to find the “toaster bags” which people would discuss on the Internet forums. I thought that I was doing everything right and although our GF/non GF set-up did work for a while, I kept on getting sick. In 2012 I developed a peripheral neuropathy, which is persistent numbness and tingling from nerve inflammation, and was evaluated for multiple sclerosis. My neuropathy ended up being Celiac Disease related, as a result of continued exposure to traces of gluten. We made our whole home gluten free in 2012 and I have had minimal problems since then.  My exposure to tiny hands and mouths with gluten crumbs was much more damaging than I could ever have imagined when I was diagnosed in 2010.

Through starting this blog I have been able to interact with a lot of moms with Celiac Disease and/or raising kids with Celiac Disease. Many of us have decided to raise all of our kids gluten free, however, this seems to be controversial.  I have learned that many people are being advised by their doctors that it is not “safe” to raise their non Celiac children gluten free, because they are being told that by doing so that they are depriving their kids of essential vitamins and nutrients.  I have researched this and have not found any evidence that this is the case, as long as gluten free kids are given a wide variety of non-processed, nutrient-rich foods.

Our youngest is now 10 months old and, freakishly enough, has 7 teeth, so she is eating table foods at dinner. We eat a lot of vegetables, fruits, meats, eggs, beans, and fish. Our “starches” consist of potatoes, rice and risotto, squash, and sweet potatoes.  Once a week or so we will make a GF pizza of some sort. Lately we have been making a cauliflower pizza crust which I adapted from a recipe I found on Pinterest (I will post it on the “Recipes” page of this blog soon). We occasionally make tacos, enchiladas and other Mexican foods, pasta or lasagna, and Indian dishes, usually a chicken curry of some sort.  For snacks our kids eat fresh fruit, applesauce, popcorn, dried fruits and nuts, yogurt, string cheese, GF crackers and rice cakes.  We always have a few “treats” in our home, usually Annie’s GF Bunny crackers, ice cream, and a tortilla chip of some sort.  I bake a lot of treats for the kids as well. We’ve made delicious chocolate chunk cookies using almond flour 2 or 3 times in the past week (see link). We’ve said goodbye to a lot of convenience foods like chicken nuggets and frozen macaroni and cheese.

I do not see any evidence that my children are nutritionally deprived. They are growing and thriving, are not anemic, and interestingly enough, my two oldest have grown quite a bit since going off of gluten last year.  I give all of them a calcium and vitamin D supplement once a day, but I have done this for years. We live in the midwest, where vitamin D deficiency is rampant in both kids and adults, and a deficiency is associated with the development of autoimmune diseases.  I have not given them any other vitamins or supplements. I am pretty certain that they are getting enough protein, fat, vitamins, minerals and calories for proper growth and development through their diets.

I am not trying to say that what I am doing for my family is right or best for all families. I am sharing my story in hopes that it may help others to make the decision whether or not to make their entire household gluten free. Looking back, I wish that I would have made the transition much earlier in my journey, as it would likely have prevented me from developing neurologic complications from Celiac Disease. Thank you for reading!

 *Also, a quick reminder that this is a blog. I am summarizing medical literature, but also adding in my own thoughts and opinions on what I have read. I am not trying to tell anyone what they should do for their own health, nor am I giving medical advice through this page. Thank you!