ID-10096024

A Glimmer of Hope (for Increased Awareness of Gluten-Related Problems)

I recently came across a discussion concerning celiac disease on a physician-only internet forum.  Here are some of the (anonymous) comments which were posted:

“Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”

“Celiac disease – so little known, so much to know, so important to know”

“Celiac disease is easy to diagnose ONCE SUSPECTED! We can easily suspect in a child with diarrhea and an adult with the same in chronic state, but in the face of generalized inanition, neuropathy, or other intestinal disorders, or teen age diabetes onset, it doesn’t readily pop up in one’s conciousness. Yet recent studies have suggested that as many as 1 in 5 with celiac disease will have a variety of neurologic and other symptoms. I know in my practice I can look back and see a number of patients whose symptoms might nowadays suggest a strong need for screening. It is with regret that I look back on their years of suffering without a chance for their improvement with a gluten free diet or study of the nutritional factors disturbed by gluten deposition.”

“Most physicians are missing the Celiac Disease because they diagnose it as IBS.”

“Its very hard for patients to stick to a gluten free diet, unless the entire family goes gluten free, which most don’t. I am seeing many more gluten free products in the stores, though, especially baking mixes and crackers/cookies – makes it easier. But I have tasted some gluten free cookies. I decided that gluten is good.”

“Hey, did y’all know that most American soy sauce is mostly fermented wheat?”

And then I came across this comment, a true treasure, which made me feel like the time I had spent reading through the other comments was actually worthwhile. I wish that I could meet this physician in person and give him or her a huge hug!

I diagnose and successfully treat many children with gluten intolerance who do not meet the typical diagnosis of celiac. I screen all kids with neuropsychiatric and immune dysfunction for the HLA DQ2 and DQ8 genetic markers. If the patient is positive, I inform them they do not necessarily meet celiac diagnostic criteria, but the gold standard is a trial off gluten. IF the child is way better ( which they often are), the family is sold on the diet, even if it takes a lot of work. 

As for the kids who get worse gluten free, (many are autistic), they are usually soy or corn sensitive, and as they remove gluten they increase their soy and corn consumption and get worse. There are many families that seem more sensitive to soy and corn than even gluten, (GMO?), any trial off gluten, a family must be warned of this potential adverse effect so they are not surprised. Also, patients dont feel better for up to 2-3 weeks, in the beginning they have gluten withdrawal and get worse.

For all of you that believe the gluten free life is hard, it is far harder to have a severe autistic, anxious, depressed or ill child. Most families are more than willing to endure the trouble when they see their kids thrive. Don’t assume they will do poor.

As for those who say that they will have nutritional deficiencies, GIVE ME A BREAK, many cultures all over the world are free of gluten, it is not needed for human life. It just takes education, plus they eat less processed foods, which all Americans could benefit from.

Looking for this in my patients has changed my whole practice, and the lives of my families. We dont have IBS in our office, no functional abdominal pain, no chronic fatigue. Gluten intolerance is not all that we do for those conditions, but it is a good place to start. Children are suffering for reasons that are treatable, not “stress”.

This last post gave me hope that awareness of gluten-related disorders is finally increasing within the medical community, especially in pediatrics. It’s about time!

 

wine

Happy Sulfite Intolerance

I started to develop chest tightness and wheezing out of the blue in the middle of running with one of my neighbors last spring. I figured that I was out of shape from my pregnancy and the strange sensation slowly resolved as I walked. But then it came back again and again, each time a little bit worse, and sometimes with chest pain. I had a chest CT to evaluate for a pulmonary embolism, since I was at risk due to being postpartum, and it was normal. My chest x-ray was normal too. My heart tests, including an EKG and Echocardiogram, were unremarkable.

One night at work I had to go to the ED because I was having so much difficulty with breathing. I was diagnosed with possible asthma, given albuterol, and sent home with a prescription for a course of oral steroids. Despite the treatment, over the course of the next few weeks my breathing declined. I went from being able to run a 10K to getting winded and short of breath walking across a Target store. I wracked my brain trying to figure out why asthma would just “pop up” suddenly when I was in my mid-thirties….

I had pulmonary function tests and a methacholine challenge, to look for exercise-induced asthma, about 6 weeks after my symptoms first started, and everything was normal (I did not have asthma).

I began to notice that my chest tightness/wheezing would occur shortly after eating. Around this time I was back to work and eating a lot of Apple Cinnamon Chex and KIND bars for both snacks and meal replacements. I began to keep a food journal and discovered that all the the following foods were triggers for my symptoms: Apple Cinnamon Chex, raisins, wine, Juices, KIND bars, eggs, certain bottled waters, balsamic vinegar, shrimp, and anything that contained molasses as an ingredient. I looked at a box of Apple Cinnamon Chex over and over until I saw the words “contains sodium sulfite.” I did a web search for foods that contain sulfites, and I found that ALL of my trigger foods were on the list. I discovered that I had a sulfite intolerance, which is also called a “sulfite allergy.”

FAQ about about sulfites:

What are sulfites?

Sulfites are sulphur-based compounds which are added to foods and supplements as a preservative and/or flavor enhancer. They may also occur naturally. Sulfite sensitive individuals need to avoid all of the following:

  • sulfur dioxide
  • sulfurous acid
  • sodium sulfite, sodium bisulfate and sodium metabisulfate
  • potassium sulfite, potassium bisulfite and postassium metabisulfite

What foods contain sulfites?

  • Baked goods
  • Beverages (including beer, wine, hard cider, fruit juice, vegetable juice, and tea)
  • Bottled lemon and lime juice (concentrates)
  • Condiments
  • Cornstarch
  • Dried fruits
  • Dried and/or processed potatoes
  • Fruit toppings/jams/jellies
  • Gravies
  • Maraschino cherries
  • Molasses
  • Sauerkraut
  • Shrimp
  • Soy
  • Vinegar
  • Wine

The most comprehensive list and forum to check out regarding sulfites is the website: www.holdthesulfites.com.

Sulfites can be present in medications. A lot of generic acetaminophen tablets and other OTC meds contain sodium metabisulfite.  Cornstarch, which is sulfited during processing, is a filler in a lot of pills, and depending on the degree of one’s sulfite sensitivity, may trigger a reaction.

Why do people develop a sulfite intolerance?

We do not know. Most of the scientific papers about sulfite allergies are case reports which were published back in the 1980s (most are in French). Some theories I have come across on the internet regarding why a sulfite intolerance develops include that sufferers may have a partial sulfite oxidase deficiency (a full deficiency is fatal, so perhaps we are “carriers” of the gene and express some symptoms), or that symptoms are due to a deficiency of molybdenum, which is a mineral cofactor in the breakdown of sulfites. Other lines of thought are that the intolerance is related to an environmental exposure of some sort and/or is immune-related (a non-IgE mediated food allergy). In my interactions with others with this problem it seems like a lot of us have either Celiac Disease or gluten sensitivity. But, this is all anecdotal, as there is no research out there (and as far as I know, no one doing any research into the problem of sulfite issues).

How is a sulfite intolerance treated?

The most important thing is the obvious: avoid sulfites! However, this is easier said than done! The only mandatory labeling is for foods and drinks with a lot of sulfites added in, such as wine,  beer, and hard cider. Other foods which contain sulfites, such as dried fruits and KIND bars, do not have mandatory labeling. I have been unable to find any GF, sulfite free beers or hard ciders. The main sulfite free wine makers are Frey and Orleans Hill. I am partial to the Orleans Hill’s Zinfandel, Syrah, and Cabernet, and am slowly getting used to bringing my own bottle with me when I socialize. Many people report a lessening of symptoms while taking Molybdenum. I tried Molybdenum, and, unfortunately, and it did not help me. Other supplements which I have seen recommended include Vitamin B12, Magnesium, and Probiotics. It also never hurts to have an Epipen (or 2) around, just in case of a severe reaction.  Ironically, though, Epipens do contain sulfites as preservatives!

How are sulfites metabolized?

Sulfite Metabolic Pathway (from http://pathman.smpdb.ca/pathways/SMP00041/pathway):

Sulfur_Metabolism_a

Update January 2014: Since writing this post last spring I discovered that my sulfite intolerance is the result of an immune system disorder called mast cell activation syndrome (MCAS) and I have since started on a treatment regimen.  Please see my recent post on MCAS for more details. Thank you.

References/Links:

1. www.holdthesulfites.com: This is hands-down the most comprehensive resource out there for those who are suffering with sulfite issues.

2. “Allergies and Sulfite Sensitivity.” www.webmd.com. 2012.

3. American Academy of Nutrition and Dietetics Nutrition Care Manual (accessed 8/10/12)

*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!

bacteria

Probiotics and Celiac Disease

Up until last year, the only thing which I knew about probiotics are that they are “good” bacteria which some people take to improve gut health. I began to see more and more posts about probiotics on the Celiac forums and I became curious. I asked my primary care physician if I should be taking probiotics for my Celiac Disease and he said no. I asked my gastroenterologist if I should be taking them and he also said no. I did not heed their advice and went to a local health foods store to buy one anyway. I told the nutritionist that I was gluten free due to Celiac Disease and was sold one that contained barley grass as an ingredient! At this point I was about 4 weeks postpartum and had a screaming baby and toddler at the health foods store with me when I made my purchase (so was a tad bit distracted). Fortunately, I was able to return the gluten-filled probiotic, and since then I have learned quite a bit.

Probiotics are healthy bacteria which keep the microflora (bacterial balance) of our digestive systems intact and prevent overgrowth of “bad” bacteria. The normal human GI tract contains 400+ types of probiotic bacteria. The largest group of probiotic bacteria in the intestine is lactic acid bacteria, of which Lactobacillus acidophilus, is the best known. Probiotics are found naturally in certain foods, such as yogurt, and are available as dietary supplements. Probiotics are often prescribed alongside antibiotics to prevent the depletion of “good” bacteria during antibiotic treatment for infections. They are also used to prevent recurrent yeast infections, during recovery from infectious diarrheal illnesses, and in some cases of intestinal inflammation, such as that seen in inflammatory bowel disease.

In 2005 there was a study done by O’Mahoney et al, which showed a marked improvement of GI symptoms (abdominal pain, bloating, and diarrhea) in patients with Irritable Bowel Syndrome who took probiotics compared with placebo (see reference). Adult and pediatric patients with Celiac Disease have recently been shown to have low levels of a probiotic species called Bifidobacterium in their digestive tracts (see reference).

A group of researchers from Argentina recently evaluated the benefit of giving probiotics to patients with Celiac Disease and published their results in the February 2013 issue of the Journal of Clinical Gastroenterology (see reference). They gave patients with untreated Celiac Disease (just to clarify, these patients were still eating gluten) a probiotic called Bifidobacterium infantis for a 3 week course and compared them to controls who took a placebo. 86% of the Celiac patients had evidence of leaky gut (called increased intestinal permeability) at the beginning. At the end of the 3 week period they evaluated for a difference in leaky gut and found no difference between the group of Celiacs who received the probiotic and the group which did not. In the discussion at the end of the article, the authors admit that their lack of difference between groups may be due to the short duration of the study and/or the fact that the probiotic administered only contained one strain.

To date, there have been no studies evaluating the effect of probiotics on the symptoms of patients with Celiac Disease who are being treated with a gluten free diet. I think that most of us with Celiac Disease who are interested in probiotics are patients who are already gluten free but not feeling 100% better, having symptoms of leaky gut, multiple food intolerances, and/or want to optimize our treatment. If a patient with Celiac Disease is not following a gluten free diet, then I think that it is less likely that he or she would be interested in taking probiotics. So, as with so much of Celiac Disease, we, the current patients, are the subjects.

Based on the “experts” in the social media world and my own experiences I have learned the following about selecting the right probiotic:

1. Make sure that your probiotic is gluten free and also free of other foods to which you may have intolerances, such as lactose or soy.

2. The higher the bacteria count (CFU), the better.

3. The probiotic should contain at least 2 different strains of bacteria, of which one should be Lactobacillus.

4. Probiotics should be taken on an empty stomach.

5. Once you begin taking a probiotic, you will experience a 24 to 48 hour period of digestive distress. This is normal and I believe is part of the war between the “good” and “bad” bacteria in your intestines. This will improve with patience and time.

I have been taking an over-the-counter (OTC) probiotic called Florajen 3 for the last 6 months or so with a good effect. It costs about $24.99 for 90 capsules, a 3 month supply, and is gluten, soy, dairy, and corn free. Other probiotics which I have seen good reviews for include Culturelle and Align, which are OTC, and VSL #3, which is by prescription only.

Since starting the probiotic my digestive symptoms and sensitivities to other foods have improved. As I have read and researched this area further, I have also decided that if/when my kids need antibiotics in the future, that I will make sure that they take a probiotic at the same time to maintain a healthy gut flora (due to them all having a high risk of gluten-related issues due to a genetic predisposition to celiac disease).  From all I have read about probiotics, I feel that the benefits far outweigh the risks for those of us with gluten-related illnesses.

Thank you for reading! If you are currently taking a probiotic, I would love to hear your experiences and advice.

*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!

13534261817451-small

HPIM0564.JPG

Easy Gluten Free “Muffin Tin” Recipes for Families

When I started this blog, I had no intention of posting recipes, as there are a ton of awesome websites and blogs with gluten free recipes already in existence.  However, as a working mom who prepares gluten free meals regularly for a family of 6, I have adopted a ton of super easy, family friendly foods over the past few years. One common theme is that all of these recipes involve making foods in a muffin tin.  For some reason, my kids seem to really like this!  All six recipes are gluten free and soy free, and some are Paleo and/or dairy free (or can be modified to be so).  If you’d like, you can skip the cooking spray and use olive oil to grease the tins instead. Okay, here are your recipes…

1. Zucchini Bites (recipe adapted from The Naptime Chef)

Ingredients: 1 cup grated zucchini, 1 egg, 1/4 yellow onion (diced), 1/4 cup cheese (we usually use parmesan), 1/4 cup GF bread crumbs, salt and pepper

Directions:  1. Preheat oven to 400F.  Spray a standard muffin tin or mini muffin tin with cooking spray and set aside.  2. Squeeze out grated zucchini between paper towels so it is dry.  3. Mix egg, onion, cheese, bread crumbs, zucchini, and salt and pepper (use as much as you’d like) in a bowl.   4.  Using a spoon or cookie scoop, fill the muffin cups to the top.   5. Bake for 15-18 minutes, or until the tops are browned and set.

**Makes 12 mini muffins or 6 regular sized muffins.  We have doubled and even tripled the recipe many times without a problem!

 

2. Pizza Frittatas (I have had this recipe for so long that I cannot recollect its origin):

Ingredients: 1 cup chopped mushrooms, 1 chopped bell pepper, pepperoni slices, 10 large eggs, 1 cup shredded mozzarella cheese, 1 tsp salt

Directions:  1. Preheat oven to 350F.   2. Saute the mushrooms and bell pepper.   3. Spray muffin tin with cooking spray and divide sauteed veggies evenly into each cup.    4.  Line inside of each cup with 4-5 slices of pepperoni.  5.  Whisk eggs and salt together.  Pour eggs evenly into each muffin cup.   6. Top each with mozzarella cheese.     7. Bake for 15 minutes, or until eggs are set and puffy.

**You can tightly wrap the individual frittatas and freeze.  Microwave in 15 sec increments until heated through.  You can prepare as a Paleo dish if mozzarella cheese is omitted.

 

3. Easy Cheesy Bread (modified from a recipe on www.simplyrecipes.com):

Ingredients: 1 egg, 1/3 cup olive oil, 2/3 cup milk, 1-1/2 cups tapioca flour, 1/2 cup grated cheese of your choice, 1 tsp salt

Directions: 1. Preheat oven to 400F.   2. Put all ingredients into a blender and pulse until smooth.  You may need to use a spatula to scrape down the sides of the blender halfway through.  3. Pour into a greased muffin tin.    4. Bake for 15-20 minutes until puffy and just lightly browned.

 

4. Meatloaf Delight (modified from a new recipe called “Meatloaf in a Muffin Tin” on Dana’s website, www.celiackiddo.wordpress.com):

Ingredients: 1-1/2 lbs lean ground sirloin, 2 garlic cloves (minced), 1tsp salt, 1/2 tsp pepper, 1 cup GF bread crumbs, 1 egg

Directions: 1. Preheat oven to 450F.     2. Grease a standard sized muffin tin.     3. Combine sirloin, egg, garlic, salt, pepper, and bread crumbs in a large bowl with your hands.     4. Divide equally into muffin cups, either using an ice cream scoop or rolling into balls and pressing into cups.    5. Bake for 20 minutes, making sure to cut into one to make sure it is cooked through before serving.

**if you check out Dana’s website (see above) she has a recipe for a ketchup glaze to put on the top before cooking.  We opted to give our kids ketchup on the side.  We just made this recipe for the first time last week. My oldest gave it a score of an 11 on a scale of 1 to 10, and my 2nd coined it “Meatloaf Delight” because he loved it so much.

 

5. Salmon Cakes (adapted from a recipe on www.runnersworld.com):

Ingredients: Two 6 oz cans of salmon, 2 eggs, 1/2 cup GF bread crumbs, 1/3 cup milk (can use non-dairy milk), 1 shredded zucchini, 2 tsp curry powder (okay to omit curry if you don’t have it)

Directions: 1 Preheat oven to 350F.    2. Combine all ingredients in a large bowl.    3. Stuff into 8 to 12 standard sized muffin cups (we have had enough for 12).    4. Bake for 25 minutes.

**can be served with an avocado sauce as well (combine 1 avocado, 1/2 cup plain yogurt, juice of 1 lime, and 1/4 tsp salt in a food processor).

 

6. Banana Chocolate Chip Muffins (also via www.celiackiddo.wordpress.com):

Ingredients: 3 ripe bananas, 1/2 cup coconut milk, 2 tbsp apple cider vinegar, 1 tsp GF vanilla extract, 1-1/2 cups GF all purpose flour (I am pretty sure you can substitute almond flour but we have not tried this yet), 1/2 cup light brown sugar, 1 tsp baking soda, 1-1/2 tsp cinnamon, 1/2 tsp salt, 1/2 cup mini chocolate chips (we use the Enjoy Life brand)

Directions: 1. Preheat oven to 350F.  Grease a standard, 12 cup muffin tin, or 2 mini muffin tins.   2. Place bananas, coconut milk, apple cider vinegar, and vanilla extract into a blender or food processor and pulse until smooth.  Scrape down sides with a spatula and blend again.    3. In a large bowl, whisk together all dry ingredients except for chocolate chips.     4. Add wet mixture to the dry mixture and mix well.     5. Fold in the chocolate chips.   6. Spoon batter into muffin tins.     7. Bake mini muffins for 10 minutes, standard sized muffins may need closer to 20 minutes (you will know they are done when a knife or toothpick inserted into the center comes out clean).

Enjoy!

ID-10068290

Why I Love Being Gluten Free

As a Celiac, going gluten free was nothing less than a rebirth for me.  I did not realize the toll that Celiac Disease had taken on my body and mind until after my diagnosis and treatment with the gluten free diet began. For the first time in my life since childhood I began to feel “normal” and like I was lifted out of a fog. The overall improvement in my life has been incredible. In addition to a total resolution of my chronic GI distress and arthritis, I experienced several other unexpected benefits of being off of gluten.

One of the first things that occurred after removing gluten from my diet was that I had a rapid increase in my energy level.  Although I ran track in high school, and continued to run while in college for fitness, I had struggled to run more than 2 miles at a time in the years leading up to diagnosis.  Like most aspects of my life, I chalked my exercise intolerance up to stress. Looking back, my real problem had been untreated Celiac Disease. Within 8 weeks of being on the gluten free diet I was able to run a 10K and within 16 weeks I completed my first half marathon.

The second thing that was noticeable within weeks of starting my gluten free journey was a marked improvement in the integrity of my hair, skin, and nails.  All of the “gross” stuff that I had experienced for ages, like adult acne, dandruff, breaking nails, alopecia (hair loss), and easy bruising, disappeared.  My hair grew back in and I actually had to get it cut regularly. I started to have to trim my fingernails on a weekly basis again (prior to going gluten free I cut them maybe once a month).  As I write and reflect on this now, I realize how malnourished by body actually was.

My depression has dissipated and I feel a joy about life that I did not feel when I sick with diarrhea, abdominal cramping, and joint pains on a regular basis. There have been several studies showing that there is a higher incidence of depression in patients with Celiac Disease, and I believe them. In my case I think that the improvement in my mood is multifactorial. Once I removed gluten I began to physically feel better and eat in a more nutritious manner, which led me to get be able to run and exercise, which in turn led to a decrease in my stress level and an improvement in my overall well-being.  Although there have been stressful experiences in my life the last few years (deaths, a miscarriage, familial stress, a multiple sclerosis scare, etc.) I have not had my depression recur like it used to prior to my diagnosis.

Miscellaneous other things which improved or disappeared when I removed gluten include the following (some seem utterly bizarre and I still cannot figure out if or why they are connected with gluten and Celiac Disease):

  • gray hairs on my head
  • ringing in my ears
  • TMJ (temporomandibular joint) pain and clicking
  • difficulty seeing at night
  • mouth sores and ulcers
  • hay fever and seasonal allergy symptoms
  • bad menstrual cramps
  • sensitivity to sounds and loud noises
  • styes
  • having to pee all of the time (although my husband may debate this one!)
  • low white blood cell count

I hope that with increased awareness and diagnosis of Celiac Disease and gluten sensitivity that others will begin to experience the fabulous gluten free life. I can attest that it is much better than the alternative!

Celiac Disease and the Innate Immune System

256px-Innate_Immune_cells

I know that this title sounds very boring (so much so that I doubt that many will read any further than this).  But, if you can bear with me, there is some fascinating research involving the role of the innate immune system in reactions to wheat. Trust me!

The role of the immune system is to fight infection.  There are two main types of immunity: innate and adaptive. The adaptive immune system is highly evolved and involves antibody formation. The ability of our bodies to “remember” previous infections and respond to vaccines depends on adaptive immunity.

The innate immune system, on the other hand, is our first line of defense against bacteria and viruses. It is primitive, exists in all plants and animals, and does not involve antibody formation. The innate immune system is made up of different types of white blood cells, including neutrophils, monocytes, basophils, and mast cells (see picture above).  When confronted with an “invader,” these cells release chemicals, called cytokines, which cause widespread inflammation.

The traditional teaching is that autoimmune diseases involve the adaptive immune system, as antibodies are created against one’s own tissues and organs, called “autoantibodies.”  For example, in Celiac Disease antigliadin antibodies and tissue transglutaminase antibodies (TTG) are created. However, recent research has shown that the innate immune system may also be involved in the “gluten reaction” experienced in Celiac Disease.

Alpha-amylase/trypsin inhibitors (ATIs) are “pest-resistant” molecules found in wheat and other cereals and grains, such as corn and soy. A team of researchers from Boston and Germany have recently discovered that wheat ATIs trigger an innate immune response, with a release of pro-inflammatory cytokines from monocytes, macrophages, and dendritic cells, when they come into contact with human intestinal cells.  They were surprised to find that inflammation occurred when wheat ATIs came into contact with cells from all of the subjects (both with and without Celiac Disease). I find this to be both fascinating and scary.

I am curious to see if those of us with Celiac Disease who seem to be “super sensitives” may actually have a stronger innate immune reaction to wheat than other Celiacs. I am also wondering if the innate immune system plays a role in why so many of us with Celiac Disease develop additional food sensitivities with time and/or feel like we get “glutened” from gluten free foods from time to time. The fact that other grains contain ATIs, and hence, can likely trigger an innate reaction, may explain why so many of us feel our best when we are on a Paleo, or at least “grain-light,” diet.  Finally, I hope that this information will stimulate research into the mechanism of non celiac gluten sensitivity, which so many suffer from.

For more information on this subject I suggest the following:

1. Gliadin Triggers Innate Immune Reaction in Celiac and Non-Celiac Individuals.  Celiac.com webpage. 12/31/2012.

2. J Exp Med. 2012 Dec 17;209(13):2395-408. doi: 10.1084/jem.20102660. Epub 2012 Dec. Wheat amylase trypsin inhibitors drive intestinal inflammation via activation of toll-like receptor. Junker Y, Zeissig S, Kim SJ, Barisani D, Wieser H, Leffler DA, Zevallos V, Libermann TA, Dillon S, Freitag TL, Kelly CP, Schuppan D. Division of Gastroenterology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA 02215, USA.

3. Researchers believe pest resistance molecules in wheat play role in triggering innate immune responses.  National Foundation for Celiac Awareness website. 12/31/2012.

4. Natural “Pesticides” in Wheat: Is There a Role in Gluten Sensitivity and Celiac Disease? By Peter Olins, PhD. December 19, 2012.

IMG_3051

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!

 

 

 

What your doctor may possibly be reading about Celiac Disease

medicine_and_Stethoscope

I was at a work function recently and I met a new physician. She noticed that I was not eating any of the food from the dinner buffet and she asked me why. I told her that I have Celiac Disease and she asked me, “What is Celiac Disease?” It took me a minute to respond because I was so taken aback by the question. When I responded that I cannot eat gluten, she asked me, “What foods is gluten found in?”  I went back to the basics in my explanation.

This encounter came about a month or two after I had another doctor ask me questions about my “gluten allergy” and whether or not I ever “cheat” on my diet. He told me that one of his relatives has Celiac Disease, but cheats all of the time.

That encounter came about 6 months after I was told by another M.D. that all Celiacs cheat on the gluten free diet because it is too difficult to follow. He shared with me that he has never met a patient who has been successful at eating gluten-free.

So, although I have not picked up a copy of “Harrison’s Principles of Internal Medicine” since medical school, as I am in a very different field, I marched into the library and began to read the 17th edition. Two of the 2500+ pages were devoted to “Celiac Sprue” (that is what it is called in this book). This is probably the last big, clunky edition of Harrison’s that many MDs have sitting in their offices for reference, as since then it has been widely available online.

Here are some of the things which I read (and what other doctors and practitioners may also be reading):

-Celiac disease is a common cause of malabsorption (true)

-it occurs in up to 1 in 113 people (true)

-although the cause is unknown, it is likely due to a combination of genetic, environmental, and immune factors (true)

-the hallmark findings are an abnormal small-intestinal biopsy showing villous blunting (photos of biopsies are shown) and response to a gluten-free diet (true)

-it may develop at any time during life (true)

-symptoms can come and go for years and years before diagnosis (true)

-symptoms include diarrhea, fatty stools, weight loss, nutrient deficiencies, anemia, bone disease, and/or iron deficiency anemia (true-but no discussion of all of the other symptoms and problems
which we now know celiac disease is associated with, like infertility, thyroid disease, joint pains, rashes, nerve inflammation, oral ulcers, ataxia, osteoporosis, etc.)

-it is associated with ingestion of gliadin, a protein component of gluten in wheat, rye, and barley (true-but no mention of oats often being a culprit as well due to heavy contamination with gluten)

-patients often have abnormally high levels of certain antibodies, such as IgA antigliadin, IgA endomysial, and IgA anti-TTG (true)

-10% of family members of celiacs may also be affected (true)

-Almost all patients are HLA-DQ2 positive. Absence of HLA-DQ2 excludes Celiac Disease (not true-we now know that about 8% of celiacs are HLA-DQ8 positive, and that a small number may actually not have either of the 2 main celiac genes).

-A small intestinal biopsy is required for diagnosis (this is not always the case anymore, a lot of people are diagnosed based on lab results, family history, and response to the GF diet; diagnostic
criteria are being revised)

-the most common cause of continued symptoms and lack of intestinal healing is continued ingestion of gluten (true, but the role other food intolerances, such as lactose intolerance, are not discussed)

-associated diseases include dermatitis herpetiformis, type 1 diabetes, and IgA deficiency (true-but no mention of all of the other problems which I discussed earlier)

-the most important complication is the development of cancers, like lymphoma (true)

Things which I am surprised were not mentioned in this textbook:
-that Celiac Disease is an autoimmune disorder
-that Celiac Disease can present without any gastrointestinal symptoms or anemia; the concept of “atypical” Celiac Disease
-that patients with Celiac Disease require follow-up testing, nutritional counseling, testing for bone density, vitamin levels, etc.
-that HLA-DQ8 is associated with the disease

This edition in my library was written in 2008. There was a more recent, 18th edition of the textbook, published in 2012, which I was able to access online. I was optimistic that it would
be much more up-to-date, which it was to a degree. There was a discussion of DQ8 as a genetic
marker. It also included the following very important statement:

“A much larger number of individuals have manifestations that are not obviously related to intestinal malabsorption, e.g., anemia, osteopenia, infertility, neurologic symptoms (“atypical celiac disease”); while an even larger group are essentially asymptomatic though with abnormal small intestinal histopathology and serologies and are referred to as “silent’ celiac disease.”

The problem is that this is very new publication, and if MDs are using the 2008 (or older) edition of the textbook, they are not going to be seeing this. A lot of younger physicians are using an online resource called “Up to Date,” which is continually updated and has all of the newer information on Celiac which seemed to be lacking in the textbook.  There is also a wonderful section on Celiac Disease in “Up to Date” for patients and their families, which I hope to share soon.

Reviewing the internal medicine textbook, in conjunction with my recent interactions with other medical providers, reminded me that we all need to work together to continue to educate our families, friends, doctors, nurses, teachers, neighbors, etc. about Celiac Disease. I am trying to do my part. Will you help me?

So it appears that Celiacs are not slowly dying after all…

Happy celiac

I recently came across the question, “Are Celiacs really slowly dying?” on one of the Celiac Disease forums. My first thought was, “Aren’t we all slowly dying?” Then, as I read, I realized that the person who posted it was concerned about research showing that many adult Celiacs do not have complete healing of their intestinal mucosa (tissue) despite being on the gluten free diet. This is called “persistent villous atrophy” in the medical world.

One of the major studies of persistent villous atrophy was published in 2009 (see link). Italian researchers studied a large group (n=465) of Celiacs who were on the gluten free diet. The average follow-up biopsy was performed 16 months after biopsy-confirmed diagnosis of Celiac Disease. At the time of follow-up biopsy, 75% of the patients reported that their symptoms had disappeared and 87% of the subjects experienced normalization of their celiac antibody tests on the gluten free diet. Of the 465 Celiacs on the GF diet, they found the following on repeat biopsy: 8% had completely normal duodenal (small intestinal) tissue, 65% were in remission (intestines looked better than at diagnosis, but there were still an increased number of white blood cells in the intestinal tissues), 26% had no change from diagnosis, and 1% were actually worse than prior to going gluten free.

At the end of the paper, the researchers hypothesize that the lack of intestinal healing and increased white blood cells may be due to the continual activation of the innate immune system by small amounts of gluten in “gluten free” foods. I plan to discuss this soon in another post. The Italian researchers’ findings and discussion at the end of their paper have, unfortunately, led many to believe that the gluten free diet is harmful and/or killing all of us with Celiac Disease.

In February 2013 Dr. Green and colleagues at both the Celiac Disease Center at Columbia University and in Sweden will be publishing a paper entitled “Mucosal healing and mortality in celiac disease.” Their teams set out to see if a lack of mucosal healing (persistent villous atrophy) is associated with an increased risk of death for patients with Celiac Disease. Similar to the Italian researchers, > 40% of Celiacs were shown to have persistent villous atrophy on follow-up biopsies. However, the researchers found no association between persistent villous atrophy and an increased risk of death for Celiacs. This is definitely a good thing!

After reading both of these papers, I am left with many questions: Why does it take so long for adult Celiacs’ guts to heal after going gluten free? Should we expect the same for children with Celiac Disease? Is the persistence of white blood cells in the intestines contributing to and/or a “marker” of the “leaky gut” that so many of us seem to be experiencing, or is it a normal part of the slow healing process? How is the innate immune system involved? Are follow-up biopsies for Celiacs going to be necessary in the future now that so many patients are diagnosed on the basis of genetics, symptoms, and abnormal antibody testing alone? Isn’t the fact that symptoms resolve and antibodies normalize much more important than what actually shows up on repeat biopsies?

I’ll definitely be hitting the books and reviewing the innate immune system in upcoming weeks with plans to share what I find with you…

**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.

 

The Prevent Celiac Disease Study

prevent_cd_logo

I recently wrote about the best available recommendations for when to introduce gluten to babies who may be at risk of developing Celiac Disease. Although most babies are exposed to small amounts of gluten in breast milk, for my 4th baby (first born after my diagnosis), my breast milk was gluten free. Based on the best available evidence in the medical literature, small amounts of gluten should be given between 4 to 6 months of age, as it seems this is a critical window for the development of the immune system. If gluten is introduced later than this, the consensus is that it is important for breastfeeding to still be taking place during gluten introduction (see references in my previous post for more info).

I understand that this is a controversial area, as many parents feel that they should never introduce gluten to the at-risk child. I believe that, despite our best efforts to shield our children from gluten, they are eventually going to be exposed one way or another.

I did recently discover that the question of the timing of gluten introduction is being explored in Europe right now through the PreventCD study (www.preventCD.com).

This study has been sponsored by the European Union and involves 11 countries. More than 1000 infants were enrolled in the study from 2007 through 2011, and they are now being followed for the development of Celiac Disease from infancy until age 3. Based on the latest newsletter on the study website, the last participant will turn 3 in 2013, and the results will be “unblinded” at this point.

The 1000 infants in the study were all considered to be “at risk” for CD by having a first-degree relative (parent and/sibling) with Celiac Disease and being HLA-DQ2 and/or DQ8 positive. The study “intervention” started at 4 months of age and went for 8 weeks. Half of the babies were given a gluten-containing baby food on a daily basis and half were given a placebo. Breastfeeding was encouraged for both groups during the 8 week period.

The endpoint of the study is to see if there is any difference in frequency of Celiac Disease between the two groups at age 3. As a mom, Celiac, and pediatrician, I am eagerly awaiting these results. I am also intereseted to see if they will have the funding and resources to be able to follow the children into later childhood and adolescence. Either way, the results which they share will be valuable for all of us!

Although the study results will not be published for a while, the researchers have published an interesting review paper on infant feeding and Celiac Disease:

Systematic review: early infant feeding and the prevention of coeliac disease. Szajewska H, Chmielewska A, Pieścik-Lech M, Ivarsson A, Kolacek S, Koletzko S, Mearin ML, Shamir R, Auricchio R, Troncone R; PREVENTCD Study Group.Aliment Pharmacol Ther. 2012 Oct;36(7):607-18.

The full details of their study are described in this paper:

The PreventCD Study design: towards new strategies for the prevention of coeliac disease. Hogen Esch CE, Rosén A, Auricchio R, Romanos J, Chmielewska A, Putter H, Ivarsson A, Szajewska H, Koning F, Wijmenga C, Troncone R, Mearin ML; PreventCD Study Group.Eur J Gastroenterol Hepatol. 2010 Dec;22(12):1424-30.

Eosinophilic Esophagitis and Celiac Disease

simplified-digestive-system-md

Eosinophilic Esophagitis, also known as “EE,” is gastrointestinal disorder that, like Celiac Disease, seems to be increasing in frequency of diagnosis. I first heard of EE disease when I was in my pediatric residency.  I worked with a Pediatric GI specialist who seemed to diagnose all of his infant patients with gastroesophageal reflux (GERD) with EE. When I learned about EE I had no idea that my dear husband had the very same problem!

My husband was diagnosed with EE in 2009 after having several episodes of choking and feeling like he had food stuck in his throat. In usual wife fashion I recommended over and over again (looking back, perhaps I nagged a little bit) that he get evaluated for his swallowing problems. He finally saw a GI doc following an ED visit for a choking episode, and had an upper endoscopy with biopsy performed that showed numerous eosinophils in his esophagus.

Eosinophils are white blood cells that are usually involved in allergic reactions. Although doctors are not exactly sure what causes EE, it is believed that food allergies/intolerances play a role. Both adults and children can be affected by EE, but the symptoms are different in these two groups. In adults EE leads to symptoms of difficulty swallowing (feeling like food is stuck in the throat), chest and/or abdominal pain, and heartburn. Infants and small children who are affected may refuse to eat, develop failure to thrive, and suffer from abdominal pain and/or nausea and vomiting. Some babies who are diagnosed and treated for “reflux” by their pediatricians may actually have EE.

Most patients with EE are referred for food allergy testing. If there are food allergies, avoiding the food “triggers” often helps their EE symptoms to improve. Infants and toddlers with EE may need to be put on a hypoallergenic formula, such as Neocate, to avoid allergic triggers. Other treatments for EE include proton pump inhibitors (PPIs), which are a type of anti-reflux medication, and swallowed inhaled steroids (such as Flovent) to decrease inflammation in the esophagus.

My husband’s GI doctor tested him for Celiac Disease, as, in his experience, he has encountered many patients who have both Celiac Disease and Eosinophilic Esophagitis. Although my husband does not have Celiac Disease, he carries one of the main Celiac genes, and he has found that his EE symptoms have markedly improved since going on a gluten free diet. I find this to be very fascinating as it makes me suspect he may be gluten sensitive to some degree.

Dr. Peter Green from Columbia University, one of the nation’s leading experts in Celiac Disease research, published a study showing a clear link between Celiac Disease and EE in 2012. In his paper (see link), both children and adults with Celiac Disease are at a much higher risk of also having EE. There have been a handful of smaller studies also showing an association between the two disorders, but, like with much research related to Celiac Disease and gluten-related disorders, more work needs to be done.

For additional information I recommend the American College of Allergy, Asthma & Immunology (ACAAI) page on Eosinophilic Esophagitis.

Celiac Disease and Pregnancy

baby-18998_640

Although I am pretty sure that I had Celiac Disease for more than two decades before my diagnosis, I was not diagnosed until after my 3rd child was born. Looking back, my diet during my first 3 pregnancies was a gluten-filled nightmare. I am actually glad that I have no idea how sky-high my celiac antibodies probably were while I was pregnant with my oldest kids.

There has not been a ton of research on celiac disease and pregnancy, but based on the work that has been done, I have learned that celiac disease has effects on fertility, miscarriage rates, fetal growth, and the ability to carry a pregnancy to term.

Celiac disease is associated with early menopause, endometriosis, irregular menstrual cycles, and amenorrhea (missed periods), similar to what is seen in many other autoimmune diseases.

Between 4 to 8% of unexplained infertility is due to undiagnosed celiac disease. Many celiacs with infertility as their main problem do not have the “classic” digestive symptoms that would normally lead to diagnosis.

Once pregnant, women with undiagnosed celiac disease have between a 2-4x higher risk of miscarriage than women who do not.

During pregnancy, women with untreated celiac disease are at a higher risk of anemia, preterm labor, stillbirth, and having infants with low birth weights (growth restriction). These problems are related to a combination of maternal nutrient deficiencies during pregnancy, as well as effects from the attack of the placenta by maternal auto antibodies (TTG).

As a part of taking care of premature babies, it is important for me to review the medical and obstetric histories of my patients’ mothers. I have come across women more times than I can keep track of who, upon review of their medical records, may have celiac disease (some combination of irritable bowel syndrome, anemia, thyroid disease, depression, infertility, diabetes, and/or asthma). I have a friend who did a small research study during her fellowship in which she evaluated the mothers of low birth weight babies for celiac disease. Through her study, one mother was diagnosed with celiac disease. Similar research has recently been conducted in Italy, with results mirroring my friend’s.

Based on the information on the University of Chicago Celiac Disease Center website, once a woman is diagnosed with celiac disease and on a strict gluten free diet, fertility should return. Experts have recommended waiting between 6 months to 2 years once being gluten free before trying to conceive, in order to give the body time to heal. It is essential for celiacs to be on appropriate vitamin and mineral supplementation while pregnant.

It is assumed that pregnancy outcomes for women with treated celiac disease are similar to those of women without it. The only exception is that celiacs are still at a higher risk of miscarriage, even when we are gluten free during pregnancy. I have personally experienced this; back in 2011 I miscarried within days of bad “glutening” episode.

In summary, women with unexplained infertility should be screened for celiac disease. Once diagnosed, it is important to remain strictly gluten free and take a good gluten free prenatal vitamin while pregnant. One of the best resources to check the gluten status of a medication is at www.glutenfreedrugs.com. Last of all, try not to worry about the effects of celiac disease on your baby! Treated maternal celiac disease has no association with birth defects, heart problems, cerebral palsy, etc. However, if you are like me, you will worry about your baby throughout your entire pregnancy…this is a totally normal part of being a mom!

For additional reading on celiac disease and pregnancy, I recommend the following links:

1. The National Foundation for Celiac Awareness’ 2009 article “Pregnancy and Celiac Disease.”

2. “Celiac Disease: An underappreciated issue in women’s health” by Shah, S (2010).

Thank you for continuing to read and providing inspiration for posts!

Update September 2013: A group of Italian researchers has discovered that the type 2 tissue transglutaminase (TTG) antibodies seen in Celiac Disease interfere with the development of placental blood vessels. Reference is Simone, et al. Potential New Mechanisms of Placental Damage in Celiac Disease: Anti-Transglutaminase Antibodies Impair Human Endometrial Angiogenesis. Biol Reprod. Sept. 5, 2013. E-pub, ahead of print.

 

 

Carrageenan and Celiac Disease

red seaweed

Carrageenan is a food additive that is extracted from red seaweed.  It is used as a thickener and emulsifier and is found in dairy products, processed meat, soymilk, toothpaste, and ready to feed infant formulas. I first came across it on an ingredient list early in on my gluten free (and food label reading) life. Once I learned that it is gluten free and “natural,” I assumed it was safe for me to eat as a celiac. However, a few months ago I began developing GI upset every time I ingested it, and I cut it totally out of my diet. Based on what I have now learned, I am glad that carrageenan is out of my life and kitchen.

First of all, the definitive answer to the question, “Is carrageenan safe for celiacs?” is never going to be known in our lifetimes.  No one is going to pay for a randomized controlled trial in which one group of celiacs are fed carrageenan and one group are fed a placebo, and outcomes of the two groups are measured. It’s just not going to happen.

Carrageenan has antiviral properties and stimulates the immune system.  On a quick search through the Pubmed.gov database, carrageenan aids in killing viruses and is being researched as an additive in treatments for HIV, enterovirus, and human papilloma virus.

When rats are given carageenan, they develop inflammation and arthritis-type symptoms.  Many studies of anti-inflammatory medications involve giving the test medications to Carrageenan exposed, and hence, inflamed rats and monitoring for improvement and side effects.

Research has shown that animals given carrageenan in high doses develop polyps, ulcers, tumors, and inflammation of the intestine. Most of the published research on the effects of carrageenan on human cells and tissues is by Dr. J. Tobacman from the University of Illinois, Chicago.  In the past year she has shown that carrageenan leads to enzyme changes and an inflammatory response in human intestinal and mammary cells as well. See link for more information.

There are two types of carrageenan. The first is degraded, or low molecular weight, and is the type which has been shown to cause inflammation in animals and human cells. It is not used in food products and products for human consumption.  The second type is undegraded, or high molecular weight, and is the type which is added to foods and beauty products.  There is an widespread belief that undegraded carrageenan is safe, and according to the Stonyfield farms website:

The scientific literature overwhelmingly concludes that undegraded carrageenan is safe to eat.  Based on this independent review of the literature, along with the Board’s recommendation to continue to allow it in organic production, we feel that carrageenan continues to be a safe ingredient to use.

What we don’t have any information about is whether or not our bodies convert some of the undegraded (“safe”) form to degraded (“unsafe”) form after we have eaten it. There are a few small studies from the 1970s which show that this chemical change occurs in the intestinal tract of rats and guinea pigs.

The European Union has banned the use of carrageenan in infant formulas due to concerns about safety in this population.  I just checked the website of the major U.S. formula makers and it is still present in most ready-to-feed formulas commercially available in the U.S.

Dr. Weil, M.D., one of the nation’s leaders in integrative health, spoke out against carrageenan in October 2012 (see link), stating, “I recommend avoiding regular consumption of foods containing carrageenan. This is especially important advice for persons with inflammatory bowel disease.”

As a Celiac I’ve made my decision and there’s no turning back now….

My First Trip to a Gastroenterologist

GI

I have been wanting to get this story off of my chest for a while! Alternative titles ideas for this post included, “Why I did not become a Gastroenterologist,” and, for my M.D. friends, “Some females with chronic abdominal pain may actually be suffering from gluten intolerance.”

I saw a gastroenterologist for the first time approximately 16 years ago. It was the summer between my freshman and sophomore year of college. It is etched in my memory because it was such a horrible experience.

I suffered from a mysterious mono-like illness when I was 18 that started shortly after an episode of food poisoning. Soon after, I began to have episodes of sharp, stabbing, diffuse abdominal pains accompanied by bloating and diarrhea. My symptoms seemed to always get worse in the evenings, shortly after dinnertime. I wondered why I would go from looking “not pregnant” to about 8 months pregnant within minutes. I slept with a heating pad on my abdomen most nights. I also had recurrent pharyngitis, fatigue, oral ulcers, and anemia. I also could eat anything I wanted without gaining any weight (which I admit, I thought was pretty cool at the time).

I was treated over and over again for stomach and duodenal ulcers, but despite treatment, my symptoms continued to worsen. During my freshman year I had an upper GI performed (barium swallow) which was normal. My adolescent medicine doctor referred me to a Gastroenterologist and I met him that following summer. It was a memorable experience…but not in a good way! The GI doctor came into the room and didn’t introduce himself. He never sat down. He did not look me in the eye. He reviewed the results of my upper GI study and told me it was normal. He told me that I had Irritable Bowel Syndrome (IBS). He asked me if I had ever been sexually abused. After telling him that I had not, he told me that I must have been abused and was repressing it, because, in his experience, most of his female patients with Irritable Bowel Syndrome had abdominal symptoms as a result of abusive memories. He recommended that I get psychological counseling and to eat a lot of whole grains. He walked out the room.

I remember this interaction vividly because I was planning on going to medical school and it was one of my first experiences as an adult patient. Although I cannot remember the name of the Gastroenterologist, I know that, if I really wanted to, I could find him, as at the time he was working at a large university hospital in a large mid-western city. I hope to God that he actually evaluates his IBS patients for Celiac Disease now, in lieu of recommending psychological evaluations and whole grains. Actually, I hope for the sake of all that he is no longer practicing medicine!

Perhaps I have shared too much with you, but I know that there are tons of Celiacs who have had similar experiences to mine. The lesson that I learned was that I should have gotten a second opinion (or third, or fourth if needed). And, if you or your loved ones are having symptoms that seem to be dismissed, that you need to seek alternate opinions as necessary.

Also, despite there being bad doctors out here, most of us truly care about our patients and want them to heal! We continually learn from our patients as well. Please ask questions and provide us with information that you think is important and relevant to your care and the care of your family. I have learned a ton from the parents of children with chronic illnesses through the years.

When “Gluten Free” Does Not Mean “Free of Gluten”

photo (1)

My husband and I recently traveled to Kauai, Hawaii for a conference. We ended up having a peaceful and wonderful time, but, as usual, I was nervous to eat due to concerns about being “glutened” while traveling. I was well prepared for the long flight with fruit, nuts, water, Larabars, and other snacks. Once we arrived at the resort, however, my anxiety set in, despite being assured by the concierge that all of the cafes, restaurants, etc. in the resort had “gluten free” options available.

The first morning of our trip I went down to grab breakfast on the terrace. I had placed an order for a large coffee and a fruit bowl, when I saw a sign stating that gluten free muffins were available. I inquired about where the gluten free muffins were, and the clerk pointed to the glass case with shelves of regular muffins, croissants, and pastries. The gluten free muffins were at the bottom of the case, in the perfect location to have an ongoing shower of crumbs as the higher up regular pastries, croissants, and muffins were removed for customers. I suggested that they move the gluten free muffins to the top row to prevent cross-contamination and I mentioned that someone with Celiac Disease could get very sick from eating one of the muffins.

The next morning I was pleased to see that the gluten free muffins had been moved to the top row, but upon closer inspection, saw that they were “kissing” the gluten containing muffins next to them (see poorly taken photo from my cell phone). Sigh….

I was reminded once again that, as Celiacs, we need to be very careful to confirm that our “gluten free” food is truly gluten free and free of cross-contamination. If a “gluten free” chicken breast is grilled on the same surface as wheat-containing buns, it is not gluten free. If “gluten free” french fries are made in the same fryer as onion rings and mozzarella sticks, they are not gluten free. If “gluten free” muffins are touching gluten-containing muffins, they are not gluten free. We must always watch our muffins and we need our families and loved ones to do the same.

Fortunately, I met a woman named Marie Cassel on the island, and thanks to her 100% gluten free bakery, Sweet Marie’s, in Lihue, I ate muffins to my heart’s delight. I truly regret not eating more of them while I had the opportunity! Now we will definitely have to return to Kauai….

 

Introducing Gluten to the Baby At-Risk for Celiac Disease

IMG_3038 copy

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!

PLEASE NOTE THAT THERE HAS BEEN ADDITIONAL RESEARCH INTO THIS TOPIC SINCE I WROTE THIS POST IN DECEMBER 2012. PLEASE SEE MY OCTOBER 2014 POST FOR DETAILS. THANK YOU!

*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

adams-gluten-free-surprise-helping-others-understand-debbie-simpson-paperback-cover-art

 

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)

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

Nejm_logo2011

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?

belly2-2354_150

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?

wheat sensitivity 2

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

brain option 3

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!

 

Celiac: Is There a Trigger?

I’ve questioned this so many times. More than 40% of Americans have at least one of the celiac genes, HLA-DQ2 and/or HLA-DQ8, yet only 1% go on develop the full-blown disease. I recently read an article in the magazine Living Without called, “Celiac Disease, By Accident,” in which possible environmental triggers are discussed (see link). Many people report that they have developed celiac disease after major life stressors, including accidents, surgeries, and infections. I am pretty sure that my trigger was pregnancy.

Although my symptoms waxed and waned for 20+ years, it was shortly after I had my 3rd child that I got very sick. At first I thought that my symptoms of fatigue and continual diarrhea were due to being postpartum, stressed, and drinking too much coffee to stay awake. Then I began to feel like I was getting food poisoning all of the time, and I actually blamed my husband for a while because he was doing most of the cooking at this point (sorry, Tom!). I blamed my hair loss on the pregnancy but thought it was strange when it didn’t grow back in. When I was about 8 months postpartum I developed additional symptoms….arthritis in my hands, knees, and ankles, diffuse oral ulcers, daily low grade fevers, low back pain, and huge bruises all over my body. At this point in time I remember feeling like I was continually “hungover” and that my brain was in a fog, even though my baby was sleeping through the night and I was no longer working the crazy night shifts that I had during my medical training. I suspected that I had an autoimmune illness and actually thought that it was probably rheumatoid arthritis.

It was around this time that I had the most memorable gastrointestinal virus of my life! I subsisted on Gatorade for about 2.5 days and all of my autoimmune symptoms went away. The fatigue, joint pains, and mouth ulcers miraculously disappeared, and I felt better than I had in ages, despite having a nasty GI bug. Then, once I did start eating again, mostly toast, saltines, and chicken noodle soup, all of the symptoms came back with a vengeance, including the GI symptoms. I was diagnosed a few weeks later. Now, every time I get “glutened,” I experience immediate GI symptoms (abdominal pains, bloating, food poisoning symptoms) followed by about 5-7 days of arthritis, lethargy, oral ulcers, brain fog, headache, and overall feeling really crummy. This is why I am so cautious with what I eat. As the breadwinner for my family I cannot afford to be sick on a regular basis. If my reaction was just a little GI discomfort, or just lasted a day, I’d probably consider cheating on the diet from time to time…..

 

Gluten is _________ (Fill in the Blank)

I know that there have been a lot of news features and pieces on the internet about the gluten free diet, so today I asked 12 random people to answer the question, “What is gluten?” Here are the responses I received:

1. A type of fat in the foods we eat.

2. A type of sugar.

3. Something in foods that makes people sick.

4. Found in dairy products and causes a negative reaction.

5. A muscle in your butt.

6. A substance in white bread–not good for you!

7. A product used for making breads, such as wheat.

8. An item in food, like a starch.

9. A type of sugar.

10. A component in wheat that can cause an allergic reaction when consumed.

11. A filler used in wheat.

12. A food product.

Okay, so outside of #5, in which I think that the person must have meant the gluteus muscles which indeed are part of our butts, everyone knew that gluten is food-related….this is a good thing. However, as you can see, an understanding of gluten, beyond the concept of it being present in food, is lacking in most cases.

Gluten is a protein found in wheat, barley, and rye. In people with Celiac Disease, eating gluten triggers an immune reaction which leads to damage to the lining of the small intestine and resultant nutrient deficiencies. Untreated Celiac Disease also leads to anemia, osteoporosis, cancers of the digestive tract, infertility, and other autoimmune problems, such as thyroid disease. There is emerging evidence that approximately 6-8% of the population has a condition called non-celiac gluten sensitivity and would also have improved health abstaining from gluten. I hope to discuss this problem soon. For now, as long as gluten does not make you sick, enjoy it in moderation, and remember that in the future, you may too have to give up gluten for health issues. I probably would have enjoyed my last slice of pizza, my last donut, my last Girl Scout cookie, etc. much more had I known they were the last I would ever eat!

Why are 97% of American Celiacs Undiagnosed?

Based on prevalence studies, it is estimated that 3 million Americans have Celiac Disease. Of these 3 million people, 2.9+ million have no idea that they have a serious autoimmune disease. This is a huge problem….

A few explanations for the atrocious rates of diagnosis:

-Only 1/3 of Celiacs have “classic” symptoms, such as abdominal pain and chronic diarrhea. Many of the symptoms of celiac disease, such as reflux, fatigue, anemia, oral ulcers, joint pains, hair loss, osteoporosis, seizures, migraines, infertility, etc. can be seen in other conditions and lead to errors and delays in diagnosis. There are probably many people with diagnoses such as chronic fatigue syndrome or fibromyalgia who actually have celiac disease as their underlying problem.

-Doctors used to teach that children with celiac disease would “outgrow” the condition, so there are many adult celiacs who believe that they outgrew their problems with wheat.

-The screening blood tests for celiac disease can be inaccurate.

  • Although there is evidence that patients need to have tests for several celiac antibodies, many labs are not performing all of these.
  • The labs that must be performed are 1. IgA endomysial antibodies, 2. IgA and IgG tissue transglutaminase antibodies, 3. total IgA antibodies, and 4. deamidated gliadin peptides.
  • 3% of celiacs have selective IgA deficiency, so if total IgA antibodies are not tested, the rest of the test results will be meaningless (meaning that celiac antibody tests will be negative even if celiac disease is present).


-Genetic testing is not perfect either. Most labs will test for two genes, HLA-DQ2 and HLA-DQ8, which are found in 95% of people with celiac diease. If a patient doesn’t have these genes, even if they get horribly sick from eating gluten, they are often told that they do not have Celiac Disease and may not be offered further testing. However, in 3-5% of cases, patients with Celiac Disease on biopsy are negative for DQ2 or DQ8. So it is possible to be a Celiac, even if you don’t have the 2 most common genes.

-Many biopsies are done incorrectly. According to most experts, the “gold standard” of diagnosis is an endoscopy with biopsy. Celiac disease destruction of the small intestine can be very patchy, and if the wrong areas are biopsied, and/or not enough tissue samples are taken, it can be missed. It is essential that at least 4 samples are taken. It is essential that the duodenal bulb be biopsied in all cases. Despite the guidelines, only 35% of biopsies are done correctly. Many patients have classic symptoms of celiac disease, positive antibodies and/or gene tests, but have negative biopsies due to the wrong area being biopsied. They are labeled as being gluten intolerant and some are sadly told and advised to continue to eat gluten!

-Right now there is no cure. Celiac disease is treated with the gluten free diet, but there is not a pharmaceutical “magic bullet.” I think that when there is finally a pill to treat this disease, and the associated marketing campaign, that people will finally get diagnosed in large numbers.

The bottom line is that if you or a loved one has any symptoms of celiac, it is worth researching the idea of celiac disease and discussing with your doctor. A lot of people who I have met have been diagnosed after asking their doctors to test them. Also, the book “Celiac Disease: A Hidden Epidemic” by Peter Green, is definitely worth checking out if you have any suspicions or conerns that gluten is causing you harm.

Help, My Gut is Leaking! Celiac Disease and the “Leaky Gut”

Intestine_-_sized

I have heard and read tidbits about the concept of the “leaky gut” for a while, especially in regards to autism, so it was with great interest that I read Dr. Alessio Fasano’s article, “The Leaky Gut and Autoimmune Diseases,” which was published in 2012. Dr. Fasano is one of the leading U.S. researchers of Celiac Disease and is the head of the Center for Celiac Disease Research at the University of Maryland. He was the first to report that 1 in 133 Americans are Celiacs (the majority of which have no idea). He will likely be one of the first to find a cure for us. And, as I recently learned by watching a recent televised interview, he is also very easy on the eyes…

Our digestive tracts are one of the largest immune organs in our body. The tissues of our small and large intestines act as a barrier to keep out proteins and other molecules which may be perceived by our bodies as being “foreign.” According to Dr. Fasano, increased intestinal permeability (or loss of the barrier function of our intestines) may play a role in the development of autoimmune diseases. In autoimmune diseases, our immune systems produce antibodies against our own tissues, called “autoantibodies.” For example, in Hashimoto’s Disease, the first autoimmune disease which I was diagnosed with, autoantibodies have attacked and destroyed my thyroid gland. In Celiac Disease, when our bodies are confronted with “foreign” proteins in gluten, such as gliadin, autoantibodies are formed which lead to an attack that may cause injury to many organs, including the intestines.

We all have “tight junctions” between the cells in the lining of our intestines. These tight junctions prevent the movement of “foreign” proteins to the layer of the intestines where the immune response occurs. Dr. Fasano has found that individuals with autoimmune diseases have increased levels of a molecule called zonulin in their intestines. Zonulin plays a role in making the intestinal tight junctions looser, and thus, “leakier.” Leaks between the tight junctions allow “foreign” proteins, i.e. gliadin, to sneak into the deeper layers of the intestine and for autoantibodies to be created. Dr. Fasano provides evidence that zonulin levels are increased in Celiac Disease as well as other autoimmune diseases, such as Type I Diabetes, Asthma, Multiple Sclerosis, and Inflammatory Bowel Disease.

Trials of a zonulin blocker, called Larazotide acetate, are currently underway. Thus far, patients with Celiac Disease who take this medication have much “tighter” junctions when ingesting gluten. While this would not be a cure for celiac disease, it would be a great way to prevent people on the GF diet from getting accidentally “glutened.” And if you are a Celiac or have a loved one who is a Celiac, you can understand how truly horrendous it is to get “glutened.” I am curious to see if research will show that increased zonulin levels lead to other food intolerances and sensitivities in those of us with Celiac disease. Since going gluten free I have also developed autoimmune/inflammatory symptoms after consuming foods with soy proteins as well as sulfites. I guess that time will tell. Until then I am patiently waiting….

Cooking for a Gluten Free Guest

I used to taste EVERYTHING when I went to a party, wedding, etc. I have now been a gluten free guest more times than I can count.

Some tips/words of advice if you will be entertaining a Celiac or individual who is highly sensitive to gluten:

1. Don’t stress!

2. Keep the food plain and simple. Use simple ingredients like vegetables, meats, oil, salt and pepper. Many sauces, marinades, broths, and dressings have gluten as a thickener.

3. Don’t assume that a processed food is gluten free without careful label reading. I have had well-intentioned family and friends make chili and soups for me, not realizing that the brands that they purchased contained gluten.

4. Don’t get offended if your guest would like to read all of the labels of ingredients you used, just to make sure there are no hidden sources of gluten. Although the FDA mandates labeling for wheat, there are no mandates for other gluten-containing grains like barley and rye.

5. If you choose to make gluten free pasta, please buy a new, cheap plastic colander and wooden spoon to use, as your normal ones are probably contaminated with gluten. You can usually find these at a dollar store.

6. If cooking with butter or margarine, open a new stick or tub, so that there is no contamination with breadcrumbs.

7. Do not place GF items directly on a rack in a toaster oven, put them on aluminum foil before toasting.

8. Talk to your guest ahead of time, if possible. Many celiacs have additional food intolerances, i.e. soy or dairy, which are helpful to know about when menu planning.

9. Ask your guest if he/she is interested in bringing a GF dish to eat and share.

10. If in doubt, order out. There are several chains in the U.S. who do a great job with gluten free entrees and prepare foods in separate areas of their kitchens to avoid gluten contamination. P.F. Chang’s and Maggiano’s both come to mind as possibilities.

Meal ideas:

Appetizers: Cut up vegetables and fruit. Slices of cheese. Nut thins or other rice based GF crackers. Shrimp. GF corn chips and salsa. Mozzarella and tomatoes with basil and balsamic vinegar.

Salads: Use any salad green and chopped veggies. No croutons. Keep dressings and toppings on the side. Have oil and vinegar available. Keep in mind that many nuts are processed on equipment shared with wheat and have the potential for gluten contamination.

Bread: If you absolutely must have bread, heat up an Against the Grain GF baguette or two and slice and serve. Can serve with GF bruschetta or dipping oils.

Main dishes: Basic meats work well, such as a roast chicken, steak, or pork tenderloin. Use oil, salt, and pepper instead of a marinade (unless you are sure it is GF). Lasgana made with brown rice noodles (Tinkyada or Trader Joe’s). Enchiladas made with GF corn tortillas (Mission brand). Baked fish seasoned with lemon and fresh herbs. Risotto. Chili made with a GF mix. Eggplant parmesan made with gluten free breadcrumbs (like Glutino). Homemade meatballs made with gluten free breadcrumbs. Most homemade Indian dishes are GF as well (obviously skip the Naan).

Side dishes: Salads. Polenta. Baked potatoes. Sweet potato fries. Butternut squash puree. Roasted vegetables. Asparagus. Homemade mashed potatoes. Simple rice dishes (avoid boxed, seasoned rice as most mixes contains gluten). GF corn bread. Thanksgiving is actually a pretty easy meal to do gluten free.

Desserts: Fruit. Ice Cream or Gelato (make sure labeled GF). GF brownies. Kids often like Fruity Pebbles squares.

Beverages: Most beers contains gluten. Wine and ciders are safe. If beer is a must, go for Redbridge, New Grist, New Planet, or Bard’s, which are all GF.

Just for Fun

I came across this picture on “Gluten Dude’s” website and it made me laugh, even though Celiac shouldn’t be spelled with an apostrophe. I hope that the little girl’s sandwich is not on Ener-G bread!

Happy Thanksgiving!

Save the Date (September 22-25, 2013, Chicago, IL)

I am thrilled to learn that the 15th International Celiac Disease Symposium will be taking place in Chicago from September 22-25, 2013. The last symposium was held in Oslo, Norway in 2011. This meeting will bring together celiac researchers, physicians, nurses, dietitians, patients, etc. from around the world. The latest research on celiac disease and non-celiac gluten sensitivity will be presented. There will be 2 separate forums, one for physicians and scientists, and a clinical forum for patients, clinicians, dieticians, etc.

I plan on attending for sure, as I live within driving distance to Chicago, it’s a lovely time of year to visit the city, and I am eager to learn from this conference. I will likely sign up for the “clinical” track, although there is a part of me which would love to participate in the scientific forum as well (each person can only register for the scientific or the clinical forum).  Luckily, I have plenty of time to make a decision.

Please check out the Symposium’s website for full details and registration. I hope to see you/meet you there and/or share information with you after I attend.

 

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.

 

My First Introduction to Celiac Disease

For my first 24 years of life I was oblivious to the existence of gluten, and unaware that I was consuming gobs of it on a regular basis. My diet in the year 2000 consisted of pizza, pasta, chicken parm, cookies, brownies, bread, waffles, etc. One of my first medical school lectures in Genetics that year was about Celiac Disease. A tall, red-headed woman with Celiac Disease, who was probably in her early forties at the time, shared her experiences of being a Celiac and living gluten free. She told us the following:

  • When she went to McDonald’s, she had to eat her burger without the bun
  • It was difficult for her to find a gluten free toothpaste, as all the major brands contained gluten
  • It cost $8-$10 for one box of brownie mix
  • Gluten free bread tasted very bad
  • It took her years to get a proper diagnosis of Celiac since she was not underweight
  • She would get extremely ill if she accidentally took one bite of a gluten-containing food

I remember thinking was that I her life was horrible and secretly feeling smug that I did not have to worry about gluten. Every time I hear someone say, “I would rather die than have to give up gluten,” I think back to this lecture and remember feeling the same way. Only now I freely choose to avoid gluten because if I continue to eat it I will die.