Tag Archives: Celiac

baby bottle

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

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

 

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.

brown (celiac)

The Effects of Gluten on the Brain and Nervous System

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Most of the articles about gluten and celiac disease I’ve came across in the media have focused on symptoms related to digestion, such as abdominal pain and bloating after eating gluten, and damage to the small intestine. The bulk of the gluten-related discussions on the celiac forums I’ve perused concern questions and answers regarding the diagnosis of celiac disease and tips for following the gluten free diet. There have been several papers published over the last few years about the neurologic effects of gluten exposure for those with celiac disease and non-celiac gluten sensitivity. I do not believe that they have gotten the attention that they deserve in the media or on the forums. I am especially interested in this area as over the last few months I have developed a peripheral neuropathy (nerve damage) related to having celiac disease.

Dr. Hadjivassiliou is one of the leading researchers on neurologic problems related to gluten exposure. Although I have no idea how to pronounce his name, I can tell you that he is on faculty in the Department of Neurology at Royal Hallamshire Hospital in Sheffield, United Kingdom. My favorite paper of Dr. Hadjivassiliou’s is a review article titled, “Gluten sensitivity: from gut to brain,” which was published in the Lancet, a major medical journal, in 2010. In this paper, gluten sensitivity refers to both celiac disease and non-celiac gluten sensitivity. Some of the key points of this paper include the following:

• Most patients with neurologic symptoms related to gluten do not have gastrointestinal symptoms.

• Ataxia (a problem with balance and coordination) and peripheral neuropathy (nerve damage) are the most common neurologic symptoms related to gluten. Up to 25% of celiac patients on a gluten free diet will develop a peripheral neuropathy at some point.

• Patients with neurologic symptoms often have celiac “autoantibodies” on blood testing, usually anti-gliadin (AGA) antibodies and/or tissue transglutaminase (TTG) antibodies. Many patients with these antibodies have non-celiac gluten sensitivity, meaning that they have high celiac antibody levels and symptoms, but no evidence of villous blunting (seen in celiac disease) on small bowel biopsy.

• The average age of onset of gluten ataxia is 53 years and for the gluten-related peripheral neuropathy is 55 years.

• Brain MRI findings can include cerebellar atrophy (loss of volume) and/or white matter lesions which may mimic those seen in multiple sclerosis.

• Neurologic symptoms often improve on a strict gluten free diet but may never resolve completely.

Gluten sensitivity has also been associated with seizures, dementia, and migraines. Obviously, further research on the effects of gluten on the brain and nervous system is needed. I’ve came across many people on the celiac forums who have psychiatric symptoms related to gluten exposure as well, although this has not been well-studied.

It seems especially frightening that many people who develop neurologic problems, like me, do so when they are already on the gluten free diet. This is a reminder that even small traces of gluten can cause serious damage to those of us who are gluten sensitive. If you have any family members or friends who develop ataxia or a peripheral neuropathy of an unknown cause, I urge you to recommend an evaluation for celiac disease and non-celiac gluten sensitivity.

For further reading on the this topic I would suggest the following links:

1. “Brain Abnormalities Common in Celiac Disease Patients,” by P. Harrison, published in Medscape Neurology News on September 10, 2012.

2. Dr. Hadjivassiliou’s Lancet Neurology article, “Gluten Sensitivity: From Gut to Brain,” published in March 2010.

3. Living Without Magazine article, “Gluten Attack: Ataxia,” found in the Feb/Mar 2011 issue.

Breastfeeding and Celiac Disease

As a mother of four children ages 7 and under, I have spent a lot of time over the past few years breastfeeding and expressing breast milk. I did not get diagnosed with celiac disease until after my 3rd was born in 2009, so it was not until my last pregnancy that I was actually gluten free…although, looking back, my “craving” during my 3rd pregnancy was for Rice Chex with milk (my body must have been trying to tell me something!) If you are interested, my pregnancy cravings during my other pregnancies were as follows: fillet-o-fish sandwiches with cheese (1st), Golden Grahams cereal (2nd), sweet potatoes (4th). I admit the fillet-o-fish thing is disgusting.

Thus far, I have not noticed any differences between my three oldest children and Baby Claire, my gluten free baby, in terms of the pregnancies, labors, deliveries, birth weights, colic vs. no colic, breast milk production, or growth during infancy.  I have spent a lot of time thinking about this as I’ve had irrational fears that my undiagnosed celiac had somehow secretly “damaged” my three oldest kids. In researching information on breastfeeding and celiac disease I came across the following link on the www.infantrisk.com site. This website, part of the Texas Tech University Health Sciences Center,  is a great resource for information on the exposure of infants to medications, nutrients, herbs, etc. through breast milk. I have called their toll free number several times in my work with with newborn babies, and have always found them to be helpful in terms of giving advice about medications in mothers’ milk.

The crux of the article is that anti-gliadin antibodies (antibodies against the major protein in gluten) are present in the breast milk of all women, even those without celiac disease. The numbers of anti-gliadin antibodies are highest in the colostrum, or early breast milk, and decrease as the months go on. These antibodies seem to be important to babies because they provide early immunity against gluten, and thus, possibly decrease the risk of later developing gluten intolerance and/or celiac disease. This helps to explain the “protective” effect of breast milk which has been shown in study after study. So now, while I still feel terrible that I was not gluten free while pregnant and breastfeeding my oldest kids, I know that I probably gave them huge titers of anti-gliadin antibodies in my celiac-diseased breast milk!

I struggled to figure out when to introduce gluten to Claire’s diet (she was just born in early 2012) and went ahead and bit the bullet. I’ll discuss this more in upcoming weeks.