Monthly Archives: November 2012

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”


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 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.