Category Archives: Children

Celiac Disease (Out of the Mouths of My Babes)

I am not going to be able to write a new post for a while due to time constraints, but I’d like to share the answers to some questions about Celiac Disease which I recently asked my 7, 5, and 3 year old children. I promised them that I would post the answers from their “interviews.” I did not interview the 1 year old for obvious reasons!

What is Celiac Disease?

3 y.o.: “It’s dumb.”

5 y.o.: “It makes you not eat gluten foods.”

7 y.o.: “If you eat gluten, even by mistake or accident, you get really sick.”

What is gluten?

3 y.o.: “A butt ”(followed by a lot of giggling!)

5 y.o.: “A type of thing that Celiacs cannot eat.”

7 y.o.: “Stuff made out of wheat. Foods with crumbs usually have it.” I am pretty sure that this answer is better than what you would get from the general public if asked the same question.

What foods have gluten?

Collaborative effort: bread, bagels, vanilla wafers, donuts, frosting and cake, ice cream, pizza, milk, French fries, hamburgers, hot dogs, sausages. Not sure where the milk came from, but they had recently experienced my disappointment on Mother’s Day when we found out that the ice cream at our local (favorite) ice cream shop now contains gluten. My husband was the recipient of my free Mother’s Day dish.

What foods do you miss?

Collaborative effort: Daddy’s oatmeal (Quaker Instant), Cheezits, pizza bagels, Goldfish crackers, vanilla wafers, ice cream sandwiches. I am truly not sad that they cannot eat these foods anymore.

If you found out you had Celiac Disease, how would you feel?

3 y.o.: “Happy, because I can’t eat gluten anymore.”

5 y.o.: “Sad, because I would miss the gluten.”

7 y.o.: “Kind of happy and kind of sad.” This is most similar to how I felt after diagnosis….

What are your favorite gluten free foods?

Again, a collaborative effort: Salmon, Annie’s Bunnies, lentils, hamburgers, chocolate, raisins, yogurt, Fruity Pebbles, popcorn, tortilla chips, Cinnamon Chex. I realized that I have not been as good about removing processed foods from our house as I thought I had been!

As life settles down a bit I hope to write about dermatiis herpetiformis, the relationship between Celiac Disease and other autoimmune diseases, non celiac gluten sensitivity, yoga, DNA testing, and much more. Please let me know if you have any topics/areas which you’d like me to try to tackle, and thanks for all of your support.

Update on Celiac Disease Screening in Infants and Toddlers

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There are multiple reasons why a young child may need to be evaluated for Celiac Disease. The most obvious reason is if he or she has symptoms, such as chronic diarrhea, poor growth, and/or anemia. Other reasons include having a first degree relative (parent or sibling) who has Celiac Disease or having another autoimmune disorder, such as Type 1 diabetes.

The main blood tests to screen for Celiac Disease are tissue transglutaminase IgA (TTG IgA) antibodies and endomysial IgA (EMA IgA) antibodies. These tests are highly sensitive, which means that if the tests are negative, Celiac Disease can be ruled out most of the time. The problem with using these tests in infants and toddlers is that the sensitivity of these tests is much lower for children under the age of 2 than it is for older children and adults. Some believe that this is because young children with Celiac Disease have not had enough time to develop TTG and EMA IgA antibodies which can be measured. Needless to day, there are probably many toddlers with Celiac Disease who are walking around undiagnosed because they did not have elevated TTG and/or EMA IgA antibodies when they were tested.

Deamidated gliadin peptides (DGPs) are a new test for antibodies against gliadin and are being used with increased frequency for screening for Celiac Disease in the U.S. and Europe. A group of Italian researchers recently studied the utility of using DGP IgG antibodies to screen for Celiac Disease in children under the age of 2. They found that 100% of children under the age of 2 with biopsy-proven Celiac Disease had abnormally high DGP IgG antibodies on blood testing. They also found that DGP antibodies were abnormally high in 4 toddlers who had malabsorption (diarrhea) but who did not have a biopsy consistent with Celiac Disease. One of the 4 children with an abnormal DGP did have mild villous blunting and eventually developed Celiac Disease. The other 3 children with diarrhea and elevated DGPs all had the genes that predispose to Celiac Disease. They plan to follow these 3 children closely for the development of Celiac Disease. The researchers also found that DGP levels correlate very well with the extent of damage on the duodenal biopsies of the children with Celiac Disease and postulate that in the future, children with markedly elevated DGP antibodies may not need to be biopsied for diagnosis with Celiac Disease.

Out of curiosity, I went to the internet sites of some of the major labs that perform Celiac Disease blood screening tests. Labs which DO include DGP IgG antibodies on their celiac panels include Prometheus, Labcorp, ARUP, and Mayo Medical Labs. Labs which DO NOT include DGP IgG antibodies on their celiac panels include Kimball Genetics and Quest Diagnostics (as of 4/17/2013).

If you suspect that your young child may have Celiac Disease, but he or she did not have positive antibodies, it may be helpful to find out which lab their blood was sent to so that you can learn whether or not DGP IgG antibodies were part of the testing. I recommend that you discuss any concerns with your child’s physician.

References:

1. Antibodies to deamidated gliadin peptides: an accurate predictor of celiac disease in infancy. Amarri, S., et al. J Clin Immunol. Published online 4/5/2013.

2. ARUP Consult. A Physician’s Guide to Laboratory Test Selection and Test Interpretation. Celiac Disease. www.arupconsult.com/assets/print/CeliacDisease.pdf.

3. Screening for celiac disease in average-risk and high-risk populations. Aggarwal, S., Lebwohl, B, and Green, P. Therap Adv Gastroenterol. Jan 2012; 5 (1): 37-47.

A New Food “Allergy” of Infancy: Food Protein Induced Enterocolitis Syndrome (FPIES)

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My oldest daughter, Grace, had horribly bad reactions to cow’s milk protein as an infant, which included vomiting, chronic diarrhea with mucus, irritability, reflux, and poor growth. Her first reaction occurred shortly after getting her initial supplemental bottle of formula. She was predominantly breastfed at first, but I did have to supplement her due to milk supply issues (which, looking back, I believe were a result of my undiagnosed Celiac Disease). She went through a series of formula changes (from regular to soy to Alimentum and Nutramigen), and it was not until she was started on Neocate, an amino acid based formula, at 2 months, that she began to grow and thrive. Looking back, I am pretty sure that she had food protein induced enterocolitis syndrome, which is also called FPIES.

FPIES is a severe food sensitivity/intolerance which causes digestive symptoms in infants. Although it is considered by many to be an “allergy,’” it does not involve the formation of IgE antibodies like other food allergies. The most common triggers for FPIES in babies are cow’s milk and soy proteins, although rice, oats, barley, fruits, and vegetables have also been documented as triggers for older infants who have been started on solid foods. Based on recent studies it is believed that 0.3% of infants have an FPIES reaction to cow’s milk. This is in addition to the 3-5% of infants who have milder non-IgE reactions (allergies) to cow’s milk protein during the first year of life.

Infants with FPIES have symptoms shortly after consuming cow’s milk and/or soy proteins, usually within 1-4 hours. The usual trigger is a cow’s milk based formula, but breast fed infants can react to milk proteins in their mother’s breast milk as well. Symptoms can include projectile vomiting, chronic diarrhea with blood and/or mucus, low blood pressure, lethargy, irritability, and/or an elevated white blood cell count. 50% of infants with FPIES who react to milk will also react to soy.

It has recently been recognized that older infants can develop FPIES after solid foods are introduced during the 2nd six months of life. Rice is the most common trigger, followed by oats, barley, chicken, turkey, egg whites, green peas, peanuts, and potatoes. I recently learned that 80% of infants with one solid food trigger will have reactions to at least one other food, and that it is common for infants to have FPIES reactions to multiple foods.

Diagnosing FPIES is difficult because there are currently no blood tests that can be used in detection. This is because the immune reaction of FPIES does not involve the formation of IgE antibodies against the offending foods. This is much different than the IgE-mediated immune reaction that occurs in older children with food allergies. IgE allergies can be detected by blood and/or skin testing. If a baby has adverse reactions after multiple exposures to the same food, FPIES can be diagnosed clinically. If the diagnosis is unclear, an oral food challenge (OFC) should be performed. It is recommended that an OFC be performed under close medical supervision (i.e. doctor’s office), as there is a risk for low blood pressure and/or dehydration to develop during a food challenge. In the worst cases an infant can develop shock. In some cases infants may need IV fluids after a reaction. Steroids are sometimes needed in severe cases. Based on what I have read, it seems that reactions to trigger foods may get more severe with time, i.e. it may take less and less of the offending food to trigger a reaction.

Research has shown that FPIES to milk and/or soy protein resolves by 3 years of age. It is recommended that children with FPIES get oral food challenges every 12 to 24 months. My oldest daughter is now 7 years old and she has no problems with dairy products (she eats yogurt, cheese, and ice cream) but she has refused to drink plain cow’s milk and has a tendency to avoid soy as well.

Reading and learning about FPIES led me to have many questions and concerns:

1. Why are so many infants born with this problem and why is it increasing in severity? Is it somehow related to their moms having undiagnosed Celiac Disease, and/or some other process causing “leaky gut” while pregnant?

2. Is this the same disease process which those of us who have multiple food intolerances are experiencing, only babies are getting sicker and having more severe reactions since their immune and digestive systems are less mature?

3. How under-diagnosed is this problem? I had never heard of it 7 years ago when my daughter had it (and I was in my pediatric residency at the time). What are the real numbers?

4. Do infants with FPIES go on to develop Celiac Disease or gluten sensitivity when they are older? Is FPIES, even though it resolves, some sort of marker for the future development of food issues in a patient?

5. Is this somehow linked to the dramatic increase in autism over the last few years? Do the FPIES episodes have some sort of effect on the developing brain of an infant?

6. Does the microflora of the gut play a role? Would probiotics prevent and/or ameliorate the problem?

7. I was going to speculate a bit about GMOs, but I am not sure that I am ready to write about that yet…

I suspect that we are going to hear a lot more about this problem in the future. I wrote this article to share the little which I know about FPIES with you, in hopes that we can learn about it together.

References:

1. American Academy of Allergy, Asthma, and Immunology website: www.acaai.org/allergist/allergies/Types/food-allergies/Pages/food-protein-induced-enterocolitis-syndrome-fpies.aspx

2. Medscape Pediatrics. “FPIES: The ‘Other” Food Allergy.” Dr. Anna Nowak-Wegrzyn, MD. Published online April 3, 2013.

3. Curr Opin Pediatr. 2012 Dec;24(6):739-45. Clinical diagnosis and management of food protein-induced enterocolitis syndrome. Leonard, S. and Nowak-Wegrzyn, A. www.ncbi.nlm.nih.gov/pubmed/23042254

4. Clin Exp Allergy. 2012 Aug;42(8):1257-65. A multicentre retrospective study of 66 Italian children with food protein-induced enterocolitis syndrome: different management for different phenotypes. Sopo, S., et al. Department of Pediatrics, University of Sacred Heart Agostino Gemelli Rome, Rome, Italy. www.ncbi.nlm.nih.gov/pubmed/22805473

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

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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!

Book Review: “Adam’s Gluten Free Surprise” by Debbie Simpson

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I discovered this book by reading a review written by “Celiac Yoga Momma.” I ordered my own copy, snuggled up with my three oldest kids over the weekend, and gave it a read. It could not have come at a better time as we’ve recently transitioned to being a totally gluten free household, which has been easier said than done.

This book shares the struggles of a little boy with celiac disease named Adam. His classroom is “typical” in the sense that parents and teachers provide treats on a regular basis, i.e. ice cream cones and pizza parties. As the school year progresses, Adam’s teacher and classmates gain a better understanding of what it means to have celiac disease and live gluten free. There is a great surprise at the end which I will not ruin for you!

“Adam’s Gluten Free Surprise” is a excellent book to read to any child with celiac disease, gluten sensitivity, and/or other food allergies. It is also an important read for any child who would benefit from having a better understanding of food allergies and intolerances, especially siblings and classmates of such children.

After we were finished with this book, my first grader and I had a nice discussion about all of the kids in her classroom who have food allergies. My preschoolers both gained a better understanding of celiac disease and why I have to be so careful to avoid foods with gluten. They asked me multiple times if I ever get sad like Adam does about not being able to eat “gluten foods” anymore…

Although Adam is an 8 year old boy, I found myself able to relate to him throughout the book. Just today I walked into our break room at work and it looked as if a “gluten bomb” had gone off. The tables and countertops were piled with cupcakes, pretzels, Chex mixes, Christmas cookies, muffins, breads, etc. and there were about one million crumbs on the floor. I related to little Adam very well as I carefully heated up my gluten free lunch and ran out.

Please check out author Debbie Simpson’s website at www.dsimpsonbooks.com. The book can be ordered through amazon.com and there are reduced prices between now and New Year’s.

This is one of my favorite pages from the book. I hope that you enjoy it as much as I did.

The Patient Celiac

I am a mom and M.D. with Celiac Disease working to increase awareness and share information about gluten-related disorders.