Monthly Archives: December 2012

Introducing Gluten to the Baby At-Risk for Celiac Disease

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This is Claire. She is my fourth baby, my “last” baby, and one of the greatest gifts of my life. She is the first baby I’ve had since being diagnosed with Celiac Disease and going gluten free. Because of this, I spent a lot of time during the postpartum period obsessing/fretting/freaking out about if/when I should expose my dear baby to gluten. I felt that I needed to do everything that I could to protect her from developing celiac disease. As usual, my husband was much more laid back and calm about the whole situation!

I researched my question and discovered the following:

1. Based on the best available information, gluten should be introduced to the “at risk” baby between 4 and 6 months of age. This runs counter to the current notion that infants should be exclusively breastfed for 6+ months and not have solids introduced until after 6 months.

2. Babies should be breastfed when gluten is first introduced and should continue to receive breast milk for at least 2-3 months after the first introduction to gluten.

Here is some of the science behind what I discovered:

-Anti-gliadin antibodies (antibodies against the major gluten protein) are present in breast milk of all women. The highest antibody titers are in colostrum, or early breastmilk, and levels decrease with time. It is hypothesized that these antibodies, which are passed from mother to baby, provide immunity to babies when gluten is introduced. Please refer to my post from November 2012 for additional information.

-Norris, et al. followed a large cohort of infants (>1500) in the U.S. who were at risk of developing celiac disease between the years 1994 and 2004. Feeding practices were analyzed and their research showed a much higher risk of celiac disease if gluten was introduced between 1 and 3 months of age or after 6 months of age.

- The rates of celiac disease skyrocketed in Sweden between 1984 and 1996; 3% of children born during this time developed celiac disease. This epidemic coincided with a nationwide change in feeding practice recommendations from starting solids between 4-6 months until after 6 months of age. This led to many infants having gluten introduced after being weaned from breastfeeding. See link for more information.

- The European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) recommends avoiding both early (<4 months) and late (>7 months) introduction of gluten and to introduce gluten while the infant is still being breastfed. This mirrors the advice given by the University of Chicago Celiac Center (see website). The American Academy of Pediatrics emphasizes the importance of introducing gluten while breastfeeding in their 2012 “Breastfeeding and the Use of Human Milk” policy statement.

Overall, there seems to be a current consensus for an optimal “window” for introducing gluten to the “at-risk” baby between 4 and 7 months.

Back to sweet, little Claire. We started her on wheat-contaminated baby oatmeal at 4.5 months one time/day for about 4 weeks. She received exclusive breast milk for the next 2.5 months and is now a gluten-free baby. We’ll see what develops with time, but at if she develops Celiac Disease, at least I will know that I tried my best to prevent it!

Happy New Year and 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.

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Celiac Disease in the December 20, 2012 New England Journal of Medicine

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I am grateful to one of my partners for leaving the December 20th issue of the New England Journal of Medicine in my mailbox with a yellow sticky note stating, “Jess, Thought this might interest you.” She was right, it did interest me, because it includes a review article written by my favorite celiac researcher, Dr. Fasano, from the Center for Celiac Research in Baltimore, MD (which, if you’re interested, will be moving to Boston, MA in 2013).

I love this article as, from the start, it highlights the fact that celiac disease can present in patients in “atypical” ways.

The article begins by describing a 22 year old female who fractures her wrist while playing volleyball. Outside of having fatigue and oral ulcers, she is otherwise healthy. An X-ray of her wrist shows that she has osteopenia (low bone density). Her blood tests show anemia, low iron, and low Vitamin D levels. She had no gastrointestinal symptoms but celiac disease is suspected.

I absolutely love this case presentation, as when I was in medical school (which wasn’t really that long ago) I learned that celiac disease was to be considered in patients with classic gastrointestinal symptoms, such as chronic abdominal pain, diarrhea, and weight loss. During my pediatrics residency (which was even more recently), I learned to suspect celiac disease in toddlers with signs of malnutrition, chronic diarrhea, and failure to thrive. Definitely not in young adults with a wrist fracture and low Vitamin D levels…..

I am so excited that hundreds and thousands of physicians, nurse practitioners, and physician assistants will read this article and learn and/or be reminded that patients with celiac disease can have symptoms NOT related to the GI tract. As Dr. Fasano eloquently states in the article, “The clinical features of celiac disease are protean and reflect its systemic nature.” How beautiful is that?

Dr. Fasano also reminds us of the consequences of untreated celiac disease, which include osteoporosis, spleen dysfunction, infertility and recurrent miscarriages, intestinal ulcers, and cancer. This is important for all doctors and patients to know.

He mentions that for many celiacs, despite adhering to a strict gluten free diet, minimal intestinal damage persists. I think that it is important for more to know this, as it highlights the need for additional research into celiac disease and the “leaky gut” phenomenon which it seems more and more of us are experiencing.

The last segment of the article is called “Areas of Uncertainty” and includes a discussion regarding the appropriate timing of introducing gluten to infants. He reports a 50% lower risk of celiac disease in infants who are receiving breast milk when gluten is introduced. I hope to write more about this in the upcoming months.

In conclusion, this article reaffirmed my admiration and gratefulness for Dr. Fasano, and I sincerely hope that its publication leads to increased diagnosis and treatment for the 97% of celiac patients in the U.S. who are walking around undiagnosed.

Can “Gluten-Free” Make you Skinny?

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This caption caught my attention as I was skimming through a recent issue of Redbook Magazine. I was skeptical to read the article at first, as the two other health features on the same page are titled “Another Reason to Have a Drink” and “Yes, Your Undies Can Be Bad for You.” However, I kept reading and am glad that I did.

I was happy to see this article in a mainstream women’s publication for the following reasons:

  • Gluten is defined, in plain English, as a protein found in wheat, barley, and rye. This is a good thing, as I wrote last month about the general public’s lack of understanding of what gluten actually is.
  • It alludes to the fact that gluten is often hidden in “non-obvious” foods, such as soups, salad dressings, and sausages.
  • The two medical reasons to be on a gluten-free diet, celiac disease and non-celiac gluten sensitivity, are discussed.
  • Although the gluten-free diet is referred to as “the world’s biggest diet trend,” there is not a laundry list of celebs who are gluten free. This is good, because if one more person mentions to me that they’ve heard that Lady Gaga is on a gluten-free diet, I think I am going to rip all of the hairs out of my head!

My criticisms of the article are as follows:

  • As usual, celiac disease is described as an autoimmune disease affecting only the gut, despite the fact that it is associated with so many other problems, including infertility, anemia, osteoporosis, thyroid disease, and fatigue.
  • There is no mention of the huge number of those with gluten sensitivity (up to 8% of the U.S. population).
  • The concept of the importance of cutting out both gluten-containing and gluten-free processed foods is totally ignored. This is a huge pet peeve of mine, as for many, being “gluten-free” means to continue to follow the carbohydrate-heavy, overly processed, standard American diet, i.e. substituting GF bagels for regular bagels and GF frozen dinners for regular frozen dinners.

It is very important for overall health and bodily healing that those of us who have Celiac Disease start on a predominantly whole foods diet. We need to focus on buying, preparing, and eating fresh vegetables, fruits, fish, nuts, lean meats, etc. (instead of GF cookies, muffins, waffles, etc.) While I am grateful that so many GF products exist, and I do indulge occasionally, I am thankful that my diagnosis has forced me to change the entire nutritional landscape of my family. I can assure you that I have not missed being able to eat Cheezits, Lucky Charms, Doritos, or Weight Watchers frozen entrees for a moment.

In summary, while this is not the best article out there about the gluten-free diet, it is an easy and quick read. And it does increase awareness that eating gluten-free is not a magic bullet for weight loss.

Next up, I need to keep reading to find out if my underwear is bad for me!

What Now? Wheat Sensitivity?

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I first came across the term “wheat sensitivity” in an editorial entitled, “Non-Celiac Wheat Sensitivity: Separating the Wheat from the Chat,” in the December 2012 issue of the American Journal of Gastroenterology. Thanks to a night of bad insomnia and a pretty interesting original research article by Carroccio, et al., in the same issue, I kept on reading…

Researchers out of Palermo, Sicily, state that “wheat sensitivity” is a both a new and real diagnosis. They reviewed the medical records of 267 patients diagnosed with both Irritable Bowel Syndrome (IBS) and “wheat sensitivity” during the 10-year period from 2001 thru 2011. All of their patients with wheat issues met the following criteria:

  1. Symptoms of irritable bowel syndrome
  2. Negative celiac antibody testing for TTG (tissue transglutaminase) and EMA (endomysial) antibodies
  3. Normal small intestinal biopsies (no villous blunting like that seen in celiac disease)
  4. Negative IgE (skin prick) testing for a wheat allergy
  5. Improvement in gastrointestinal symptoms on a wheat free diet by a double-blind placebo challenge

For the double-blind placebo wheat challenge the patients ate a regular diet, including 30 grams of wheat, daily for 2 to 4 weeks. 30 grams of wheat equals 1 slice of bread. They then had a 2-week elimination period, in which they stopped eating wheat, dairy, tomatoes, eggs, and chocolate, all of which are considered highly allergenic foods in Italy. After the elimination diet period, they were then given one of two pills everyday for 2 weeks. Pill “A” contained wheat and Pill “B” was a placebo sugar pill. Neither the research subjects, nor the researchers, knew which pill each subject was taking during the test period; this is why it is called a “double-blind” placebo study. There was a one week interim period in which subjects avoided all of the allergenic foods again, and then those who received pill “B” for the 1st two weeks were given “A” for the 2nd two week period and vice versa. The beauty of this type of crossover study is that each subject served as his or her own control.

If you’ve actually read this far, you may be wondering what the researchers found when they re-analyzed the 276 cases of wheat sensitivity….see below!

Compared to patients with Celiac Disease and IBS, those with “wheat sensitivity” have the following characteristics:

  • Increased likelihood of having atopic diseases (i.e. eczema, hay fever, environmental allergies)
  • Increased history of food allergies, especially during infancy
  • Elevated numbers of eosinophils (white blood associated with allergic reactions) in both the small and large intestine
  • Abnormally high anti-gliadin antibodies (a type of antibody against one of the gluten proteins) compared with those with IBS
  • Higher rates of anemia and weight loss than seen in those patients with non-wheat sensitive IBS

The researchers were able to break down the 276 wheat sensitive individuals into 2 groups. Those in Group 1 (n=70) shared many characteristics with Celiac patients, including having the genes that predispose to Celiac Disease (HLA DQ2 and/or DQ8). They believe that these wheat sensitive patients with IBS are at risk for the later development of celiac disease. Those in Group 2 (n=206) were found to have multiple food intolerances, including having antibodies to cow’s milk proteins, despite not having IgE mediated food allergies on skin prick testing. This group was referred to as the multiple food sensitivity group.

I believe that the researchers have done a great job demonstrating that there are many people with IBS who may benefit from being wheat free. I wish that I had known this when I was diagnosed with IBS at age 19. I was advised to increase my consumption of healthy whole grains, which I did; unfortunately, most of my increased grain consumption was in the form of whole wheat!

Perhaps in the future gastroenterologists will be able to use the presence/absence of eosinophils in the small and large intestines to help guide nutritional recommendations for patients with IBS. I am especially interested in seeing what the future holds for learning about links between wheat and cow’s milk protein sensitivities. I work with newborn babies and it seems like the numbers of babies with cow’s milk protein allergies are skyrocketing. I hope to write more about this soon.

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.

My “Unlucky” Seven

Since going gluten free 3 years ago I have made my share of mistakes leading to “glutenings.” Most of them were in my first 6 months post-diagnosis. I am sharing my list in hopes that I may prevent others from getting sick like I did. I am also sharing so that friends and family members of Celiacs may understand why their Celiac loved one may seem to be “paranoid” from time to time.

1. Shampoo: I had a bad case of brassy highlights and bought a “blueing” shampoo to use a few times a week to neutralize the brassiness. Lo and behold, I began to feel ill, and one morning, as I read the ingredients while in the shower, I realized that my shampoo contained hydrolyzed wheat protein. There is a lot of controversy about whether or not gluten can be absorbed through the skin, but in this case, I believe that a little bit of shampoo was probably getting into my mouth while I was rinsing my hair. I stopped using the shampoo and my symptoms went away. Problem solved. My lesson learned was to always read the ingredients in hair products before buying and using them.

2. Playdough: Yes, this seems obvious, but I honestly thought that if I washed my hands carefully after playing with it, that I would be safe. I had figured that as long as I didn’t actually eat the Playdough that I would be fine. I was totally wrong. If you’re a Celiac with kids, you cannot touch Playdough with a ten foot pole! Trust me.

3. Eating gluten free pizza at a pizza parlor that makes regular pizza: Looking back, it seems obvious that this was a bad idea, but I had confirmed with the kitchen staff ahead of time that there were no gluten ingredients, that the gluten free pizza would be made on a separate surface, that the flour used to roll out my pizza was gluten free, etc. I learned a lesson in cross-contamination.

4. Hand sanitizer: I was traveling for a work conference, through lots of dirty airports, subways, etc. in the middle of winter, so I used a lot of hand sanitizer. Unfortunately, I soon discovered that it had wheat amino acids in it. Like the shampoo incident, I don’t believe that I absorbed the wheat protein through my skin, but I used the sanitizer many times before eating, and thus, probably ingested trace amounts that built up in my system and made me ill.

5. Soup at an airport café: As most celiacs know, soups are usually unsafe. I was at an Au Bon Pain at a major airport (yes, a very poor choice of café for a Celiac) and was pregnant and starving. The soup was labeled as a gluten free white bean soup and there were ingredients listed, which were all “safe.” But it wasn’t actually safe at all. I am pretty sure that the ladle must have been contaminated by being dipped in some of the other soups, and then put back into the gluten free one. That was the last bowl of soup that I ever ate….

6. Making Christmas cookies: This happened shortly after the Playdough incident, but I was still in denial that I could get sick just from touching/handling wheat flour. My kids and I made dozens and dozens of cut-out Christmas cookies using regular flour. I washed my hands numerous times, picked dough out from underneath my fingernails, and obviously didn’t eat any of the cookies, but still got majorly glutened. Hence, the gluten free cut-out cookie recipe that I shared with you last week!

7. Trusting a “no gluten ingredients” label: This was my most recent glutening. We do not live near a Trader Joe’s but will often stop at one when traveling. I have always avoided any of their products that have the disclaimer that they are made on “shared equipment” with wheat because I know I am sensitive and react to traces of gluten. We bought and prepared a basic spaghetti sauce that was marked as “no gluten ingredients” and did not have the shared equipment warning on it. We ate it with rice pasta for dinner and I got sick (no one else in my family did). I contacted Trader Joe’s via email and they did write back that the sauce was made on shared equipment. I have learned to never make any assumptions about processed foods.

As time has passed I have learned how careful I really need to be to prevent getting sick. I wish that I knew at diagnosis what I know now, that being “gluten free” is not as simple as it sounds and to not take risks with the diet. For those of us with Celiac Disease, eating gluten free is not trendy or a “fad,” it is the difference between sickness and health. As the actress Jennifer Esposito, a Celiac, recently stated, “This disease is no joke.” I wholeheartedly agree.

The Latest and Greatest on Non-Celiac Gluten Sensitivity

Yes, this is a real diagnosis, and it effects between 6 to 8% of our population, or approximately 18 million people. Many doctors and patients are unaware that it exists. Most of the papers on this topic have only been published in the last 2-3 years. The British Medical Journal published a case study and review of gluten sensitivity in their November 30, 2012 edition. It is the first case study I have come across in a major medical journal in which a patient self-diagnoses based on information which he found on the internet. The review article gives a good overview of our current understanding of this disorder.

Gluten sensitivity is a catchall term for a bodily reaction to eating gluten. It is not a food allergy, and the autoimmune process differs from celiac disease in that there is not destruction of the villi of the small intestine. People with gluten sensitivity may experience any of the following symptoms after eating gluten:

1. Gastrointestinal symptoms like diarrhea, abdominal pain, constipation, and/or “irritable bowel syndrome.”

2. Fatigue, depression, or difficulty concentrating. Feeling like one has a “foggy brain.”

3. Joint pains, stiffness, and/or leg numbness and tingling.

Anemia and osteoporosis have also been associated with gluten sensitivity. Some recent work has also shown neurologic problems, such as ataxia and peripheral neuropathy, in gluten-sensitive individuals.

Many of these symptoms overlap with celiac disease, but patients with gluten sensitivity do not meet the diagnostic criteria for celiac disease. Some may not have either of the two major celiac genes (HLA-DQ2 or DQ8), some may not have abnormal celiac antibodies, and most have normal, or almost normal, small bowel biopsies.

There are no tests for gluten sensitivity. Once celiac disease has been ruled out, if your symptoms go away when you stop eating gluten, and they return when you start eating gluten again, then you know that you are “sensitive” to it. You can diagnosis yourself.

We do not yet have information on the long-term effects of continuing to eat gluten if you have a gluten sensitivity. In this recent article, Dr. Fasano, one of the leaders in celiac disease research, states that he doesn’t believe that there are long term effects on health if you choose to do this.

I am a bit uncomfortable with this, as just a few decades ago it was believed that patients could “outgrow” celiac disease. The bottom line is that if a food makes you feel terrible, don’t eat it! You can definitely survive and live a full life without gluten-containing cupcakes, pizza, pancakes, etc. My fellow Celiacs and I are proof of this and we can help you on this journey.

For additional reading on this subject I would suggest Melinda Beck’s article, “Clues to Gluten Sensitivity,” published in the March 15, 2011, Wall Street Journal Health Journal.  There is also some helpful information about gluten sensitivity on the website www.celiaccenter.org.

Easy Cut-Out Gluten Free Christmas Cookies

I made the mistake of making regular Christmas cookies with my kids my first winter after diagnosis. Even though I did not eat the cookies, I experienced a major “glutening” episode from just working with the cookie dough. The next year I came across the following recipe for gluten free  holiday cookies, and I’ve used it ever since. My friends and family have not been able to detect a difference between these cookies and “regular” Christmas cookies. Plus it’s an easy recipe!

Ingredients:

1 cup of sugar

1 cup of butter, softened

2 egg yolks

1-1/2 teaspoons GF vanilla extract

1/4 teaspoon salt

2 1/4 cups GF flour blend (this is made by mixing 2 cups of white rice flour, 2/3 cups of potato starch, 1/3 cup of tapioca flour, and 1 teaspoon xanthan gum. I left out the xanthan gum the last time and it turned out fine too)

Directions:

1. Combine sugar and butter in a large bowl. Beat at medium speed, scraping the bowl often, until creamy. Add egg yolks and vanilla. Continue beating, scraping often, until well mixed. Reduce speed to low; add GF flour blend and salt. Beat until well mixed. Cover and refrigerate until firm (approximately 1 hour).

2. Heat oven to 350 degrees F. Roll out dough on surface lightly dusted with GF flour, one half at a time (keep other half in refrigerator), until 1/4 inch thick. Cut into shapes with cookie cutters. Place 1 inch apart on ungreased cookie sheets.

3. Bake for 8 to 12 minutes or until edges are lightly browned. Let stand 2 minutes and remove from cookie sheets. Makes approx. 36 cookies.

Enjoy!