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Nonresponsive Celiac Disease

Nonresponders are the 5% of Celiac patients who have either persistent symptoms and/or abnormally high Celiac antibodies after two years on the gluten free diet.

According the most recent medical review in the “Up to Date” database, there are 5 main categories of nonresponders to the gluten free diet:

Patient is continuing to eat gluten. This is the most common cause of persistent symptoms. This can be on purpose (i.e. taking a little bite of a gluten containing food every once in a while) or accidental (i.e. not realizing that a child is nibbling her wheat containing Playdough at school).
Patient doesn’t actually have Celiac Disease. For example, elevated serum antigliadin IgA antibodies may be a false positive. Small intestinal villous blunting may be caused by any of the following: hypogammaglobulinemia, acute infectious gastroenteritis, lymphoma, Crohn’s Disease, and/or a milk protein intolerance.
There is a second disease present, in addition to Celiac, which is causing symptoms. Lactose intolerance, irritable bowel syndrome, small bowel bacterial overgrowth, pancreatic insufficiency, and microscopic colitis can all lead to digestive symptoms in patients with Celiac Disease. I recently wrote about having the dual diagnosis of Celiac Disease and Irritable Bowel Syndrome (see link).
Refractory sprue is Celiac Disease which has never improved, or recurs after a period of “remission.” It usually needs to be treated with steroids or other drugs that suppress the immune system, as it can lead to #5.
Ulcerative jejunitis and/or intestinal lymphoma. Patients with ulcerative jejunitis have symptoms of malabsorption, fatigue, loss of appetite, weight loss, abdominal pain, diarrhea, and fever despite being on a gluten-free diet. Small bowel obstructions may occur. Lymphomas have similar symptoms to ulcerative jejunitis, but may also be associated with fevers and abdominal masses.

The bottom line is that If you do not feel significantly better after two years on the gluten free diet, you need to work with your doctor to figure out the reason why. Untreated refractory sprue, ulcerative jejunitis, and lymphoma can lead to death. This is yet another reason to recommend screening to our family members…and if any of my 4 siblings are reading this, yes, you need to get tested or I will continue to badger you about this for this rest of your lives!

References:

1. Cleveland Clinic Center for Continuing Education. “Celiac Disease and Malabsorptive Disorders.” By J. Wakim-Fleming.

2. “Management of Celiac Disease in Adults.” By Ciclitira, P.J. UpToDate, April 10, 2013. www.uptodate.com.

“Up to Date” Management of Celiac Disease in Adults

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“Up to Date” is an online medical database for physicians and other practitioners. I use it almost every day when I am at work to get a brief overview of the most recent evidence regarding the diagnosis and management of my patients’ problems.

I just reviewed the most recent “Up to Date” highlights on the management of Celiac Disease in adults (published April 10, 2013). Here are some of the highlights:

There are 6 key elements in the management of Celiac patients (note pneumonic CELIAC):

Consultation with a skilled dietician.
Education about the disease.
Lifelong adherence to a gluten free diet.
Identification and treatment of nutritional deficiencies.
Access to an advocacy group.
Continuous long-term follow-up by a multidisciplinary team.

I highlighted #4 because I think that it is in important one to discuss and a reminder that the management of our disease is a bit more complicated than just eating gluten free foods.

The authors suggest that newly diagnosed patients should have blood work done 4 to 6 weeks after starting the gluten free diet, which should include a CBC (complete blood count, to evaluate for anemia), folate and vitamin B12 levels, iron studies, liver chemistries, and Celiac antibody levels. In most cases, TTG (tissue transglutminase) IgA levels should decrease to normal within 3 to 12 months of going gluten free. The authors reiterate that the most common cause of persistently elevated celiac antibodies is continued exposure to gluten (whether intentional or not).

Although the authors still recommend a repeat endoscopy and small bowel biopsy 3 to 4 months after going gluten free, they admit that this is debatable. An increasing number of physicians will only repeat the biopsy for patients with persistent symptoms after going gluten free.

“Nonresponders” are patients who have persistent symptoms and/or elevated antibodies and/or abnormal small bowel biopsies after 2 years on the GF diet. I plan to discuss this topic in further detail in an upcoming post.

The authors recommend monitoring for specific nutritional deficiencies which are associated with Celiac Disease, including the following: iron, folic acid, calcium, vitamin D, thiamine, vitamin B6, vitamin B12, magnesium, zinc, copper, and selenium, especially at the time of diagnosis. This is pretty much in line with the recommendations from the University of Chicago Celiac Disease Center.

Patients should be evaluated for bone loss using a DEXA scan at time of diagnosis and at one year intervals. As an aside, I was unable to get my own insurance to cover this for me, and my out of pocket quotes ranged from $650 to $800. I am going to have to start to pick this battle again soon.

Family members should be screened. The authors quote that 5-11% of first degree relatives (parents, siblings, children) will also have Celiac Disease. This is quite a bit higher than some of the other estimates which I have seen.

A few things in this article which I had never heard before:

- It is normal for women to experience breast tenderness in the 1^st 3 months after going gluten free….

- Gluten challenges in children with Celiac Disease may increase the risk of the development of additional autoimmune disorders, such as type 1 diabetes…

- Improvement in dermatitis herpetiformis may not occur for 6 to 12 months after going gluten free…

I just tried to remember what the CELIAC pneumonic stands for, and failed miserably, so I am going to go to sleep instead. Thanks for reading and good night!

Reference:

“Management of Celiac Disease in Adults.” By Ciclitira, P.J. UpToDate, April 10, 2013. www.uptodate.com.

So you just found out that you have Celiac Disease….now what?

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This post is in honor of all of us whose only advice was to “eat gluten free” after diagnosis!

1. Cry. Be angry. Complain. Mourn the loss of gluten from your life. You will never be able to eat pasta, pizza, chocolate chip cookies, or drink beer again. Feel sorry for yourself. Cry and yell some more. Get it all out, emotionally, at the beginning. FYI, I was so angry and in denial at first that I ate a whole sleeve of Thin Mint Girl Scout cookies and then cheesy pizza bread sticks within a 24 hour period right after my testing was complete…the effects on my body were so horrible, that I was able to then go gluten free and never look back (I just wish that I been smarter about choosing my last gluten-containing foods).

2. Learn about which foods contain gluten. There is a great list on the Living Without Magazine website (see link). Remember that you can never eat any of the following again: wheat (einkorn, durum, faro, graham, kamut, semolina, or spelt), rye, barley, triticale, malt, malt flavoring, and malt vinegar. Get used to reading ingredient labels and calling companies to inquire about gluten in foods and products. Two of my favorite lists come from the page www.withstyleandgraceblog.com:

3. Purge your kitchen, bathroom, and medicine cabinet of gluten. You will give away/throw away more than you could ever imagine. Gluten Free Makeup Gal’s website can help with cosmetics and www.glutenfreedrugs.com can help you to find out if gluten is lurking in your medications.

4. Get copies of your Celiac tests (antibodies, genes, pathology results). Read through them, learn from them, and share them with your family members who may need to be tested.

5. Find reliable sources about Celiac Disease and sign up for internet newsletters, Facebook pages, etc. My two favorites are the National Foundaton for Celiac Disease Awareness (www.celiaccentral.org) and the University of Chicago Celiac Disease Center (www.cureceliacdisease.org).

6. Do not give in to the urge to replace all of the foods you threw away (pastas, breads, salad dressings, etc.) with gluten free versions. Try one or two gluten free products out a week, as many of these foods are very expensive, may not taste good, and contain a lot of sugar and empty calories. Focus on eating a lot of whole foods (fruits, veggies, lean meats, fish, potatoes, etc) in the first few months if you can.

7. Explore shopping for GF foods online, as you may be able to save quite a bit of money. I’ve been able to order flours and mixes, i.e. Bob’s Red Mill, for almost 50% off what I would have paid at my local grocer.

8. Find a few “go-to” meals and snacks for when you are time pressed but need to be able to safely eat, i.e. Larabars and KIND bars.

9. Find a support group, whether it be it a local group or online. I just joined a fabulous one that was started by Chrissy from “Glam Without Gluten” (see link).

10. Discuss whether or not you need supplements with your doctor or practioner. A lot of us are anemic and/or Vitamin B12 deficient in the beginning. It is important for us to have our Vitamin D levels and our thyroid function monitored. There is emerging information on the role of altered gut flora (bacteria) in inflammation of the digestive system, so you may want to consider a probiotic as well (see my post on probiotics for more details).

11. Encourage your family members to get tested. First degree family members (parents, siblings, and children) have a 1 in 22 risk of also having Celiac Disease. Second degree family members (aunts, uncle, grandparents) have a 1 in 39 risk.

12. Expect a change in how you socialize. Gone are the days when you can freely eat and drink whatever you’d like at every party, potluck, wedding, etc. Some people will go out of their way to accommodate you, and others won’t. Some will care about your diagnosis, and others won’t (and it will be difficult to predict who will care and who won’t). You will feel “left out” at least some of the time. Get used to bringing your own food and snacks wherever you go. I always bring a GF item to every social gathering I attend, so that I am assured that there will be one food that is safe for me to eat.

13. Take care of your body. Run, walk, do yoga, meditate. Use your diagnosis as an opportunity to take charge not only of your diet, but your overall well-being. Once I was gluten free, I was able to run again after years of not having the endurance to run more than 2 miles.

14. Cry. Be angry. Complain. There will be good and bad days at first, but with time, the good days will outnumber the bad. It will get easier, I promise!

One of my favorite reminders to take care of myself:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

References:

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

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

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

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

Socializing and Socca Bread

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I was recently reminded of how socially isolating Celiac Disease can be. I attended a day long volunteering orientation during which a complimentary lunch of sub sandwiches and cookies was provided for attendees. I was not surprised by this, and, as usual, packed and brought a lunch from home. I am so far into this whole Celiac thing that I was not bothered by this at all. The two women sitting closest to me at the orientation were curious as to why I brought own lunch when we knew ahead of time that a free lunch was going to be provided. I went through the whole, “I have Celiac Disease, so I get very sick if I eat gluten,” explanation for the umpteenth time. Again, not a big deal, and I am always happy to educate others about gluten-related illnesses.

When I finished my lunch I grabbed my phone to check my emails. The first 3 emails I read were the following:

1. An invitation to a spaghetti and garlic bread benefit dinner for a local homeless shelter.

2. A reminder that my upcoming book club is at a cheesecake restaurant (I have been there many times and there is nothing on the menu I can eat and no “carry ins” allowed).

3. A local running club invitation to an upcoming ”flatbread and beer” 5K fun run.

This string of emails was a quick wake-up call that those of us with Celiac Disease (1% of the population) are a small minority, that we truly live in a food-based culture, and a reminder that I used to take similar social events totally for granted back when I could attend them.

I fortunately, just this week, came across a recipe for socca bread, a French, chickpea flour-based flatbread which is similar to Italian farinata. It is gluten free, dairy free, cheap, easy to make, and tastes great. I found the recipe on the website www.thekitchn.com. I used the oven method to make it, as I am ashamed to admit that I do not own a cast iron skllet, and I used Bob’s Red Mill Garbanzo Bean Flour. I am not ashamed to admit that I ate the entire flatbread in less than a day!

Ingredients

1 cup (4 1/2 ounces) chickpea flour
1 cup (8 ounces) water
1 1/2 tablespoons extra-virgin olive oil, plus more for the pan
1/2 teaspoon salt
Optional seasonings: 1 tablespoon chopped fresh herbs (rosemary, thyme, oregano), 1-2 cloves minced garlic, 1/8-1/2 teaspoon spice (chili powder, cumin, smoked paprika, za’atar)

Equipment

10-inch cast-iron skillet, pie tin, or other metal baking dish
Spatula
Knife

Instructions

Makes 1 thick 10″ pancake or 2 thin 10″ pancakes (recipe can be multiplied)

1. Prepare the Chickpea Batter – Whisk together the chickpea flour, water, olive oil, and salt in a small bowl. Let rest for 1/2 hour to 2 hours to give the flour time to absorb the water.

2. Heat the Broiler and the Pan – Set an oven rack six inches below your oven’s broiler and turn on the broiler. Set a cast iron skillet or other baking dish on the rack to warm for five minutes.

3. Pour the Batter – Remove the skillet from the oven using oven mitts. Add a teaspoon or so of olive oil and swirl to coat the bottom of the pan. Whisk the chickpea batter quickly and then pour half into the hot skillet (or all if making a thicker pancake). Tilt the pan so the batter coats the entire surface of the pan.

4. Broil the Socca – Broil for 3 to 5 minutes, until you see the top of the socca begin to blister and brown. If you find the top browning before the batter is fully set, move the skillet to a lower oven rack until done. The socca should be fairly flexible in the middle but crispy on the edges.

5. Slice and Serve – Use a spatula to work your way under the socca and ease it from the pan. Slice it into wedges or squares, sprinkle with salt and pepper, and drizzle with a little good olive oil. Repeat with any remaining batter.

Socca is best if eaten immediately after baking while still warm, but can be refrigerated and re-toasted for up to a week.

Additional Notes:

• To Bake in the Oven: Heat the oven to 450°F and pre-heat the baking dish for 5 minutes. Bake the socca for 8-10 minutes, until it’s cooked through, then run it under the broiler to blister the top.

• To Bake on the Stove Top: Film a pan with oil and set over medium-high heat. Pour in the socca batter. After about 3 minutes when the edges are firm, gently lift the pancake and flip it. Cook on the other side for another 2 to 3 minutes, until both surfaces are dry and beginning to brown.

I plan on making socca often, and sharing it with many. I may even have my own socca bread party so that I can actually socialize and eat at the same time. I hope you enjoy it as much as I did.

Disclaimer: The socca bread which I made looked nowhere near as pretty as the socca bread photo which I found on www.wholeliving.com. Their website also has a few different recipes and suggestions for socca bread preparation.

It is Possible to Have Both Celiac Disease and I.B.S.

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Like many, I had a long delay in my diagnosis of Celiac Disease and walked around for years with a label of Irritable Bowel Syndrome (I.B.S.) Once I was diagnosed with Celiac Disease in 2010, I threw my diagnosis of I.B.S. in the garbage. From a medical standpoint, I have ignored discussions and articles regarding I.B.S., digestive problems in fibromyalgia, “functional bowel disease,” FODMAPs, etc. because I have assumed that they do not apply to me. Also, the largest patients I take care of are about 12 lbs., and, fortunately, do not suffer from I.B.S.

I have been trying to search for answers as to why so many of us with Celiac Disease also have multiple food intolerances. With our villous blunting and poorly functioning small intestines before diagnosis, it makes physiologic sense to have a temporary lactose intolerance. I had severe lactose intolerance when I was first diagnosed with Celiac Disease and was unable to tolerate dairy until I had been gluten free for at least 6 months. I can now tolerate a moderate amount of dairy without the development of GI symptoms. However, since being diagnosed with Celiac Disease in 2010, I have developed intolerances to both soy protein (after one year of being GF) and sulfites (right around my two year anniversary of being GF). When I ingest soy proteins or sulfites I have immediate digestive distress followed by a “delayed” onset of inflammatory symptoms about 24 hours later.

Recent research has shown that I.B.S. patients often have multiple food intolerances, of which wheat is one of the most common. A group of Italian researchers published a paper last fall that highlighted that many patients with “wheat sensitive” I.B.S. have other food intolerances, the most common of which are dairy, tomatoes, eggs, and chocolate. I did write a bit about this last December in a post which I titled, “What Now, Wheat Sensitivity?” The original research article by Carrocchio, et al. can be found here.

Although I used to think of I.B.S. as being a “diagnosis of exclusion,” I have confirmed with the University of Chicago Celiac Disease Center, as well as two other gastroenterologists, that it is possible to have both Celiac Disease and I.B.S. With my development of multiple food intolerances and “super sensitivity” to traces of gluten, I believe that I may have both Celiac Disease and “wheat sensitive” I.B.S. Through my online interactions with many other Celiacs, I am pretty sure that I am not alone in this either. Due to the plethora of information regarding Celiac Disease on the internet, we are fortunate to be able to read and learn a lot about the treatment for Celiac Disease (which, as we know, is the gluten free diet). We have much less information about what to do about I.B.S. symptoms. In my case, I was totally in the dark as to the fact that I probably still have I.B.S., as I figured that all of my gut problems and symptoms were from untreated Celiac Disease. However, in reading up on I.B.S. for this article, I have learned that April is I.B.S. Awareness month. There is also a huge online IBS support forum which can be found at www.ibsgroup.org.

In brief, I.B.S. is a chronic condition of the digestive system of which the most common symptoms are abdominal pain and diarrhea and/or constipation. It is estimated that 10-20% of the U.S. population, at any given time, meets criteria for having I.B.S. Although the exact cause of I.B.S. is unclear, current theories include that it involves having a “spastic” colon, a history of a previous GI infection, food intolerance(s), stress, and/or overactive nerves in the GI tract. Current treatments for I.B.S. include dietary changes, psychological therapies, and medications, including antispasmodic drugs, antidepressants, and anti-diarrheal therapies.

The low FODMAPs diet (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) is one of the most popular nutritional treatments for I.B.S. The underlying theory is that an alteration in small intestinal gut flora leads to the fermentation of short chain carbohydrate components (FODMAPs) in the large intestine. Fermentation by colonic bacteria causes adverse symptoms such as gas, abdominal pain, diarrhea, and constipation which can lead to I.B.S.

FODMAPs include the following: fructans (found in wheat, rye, onion, garlic, artichokes, asparagus, and chocolate), fructose (found in honey, fruits, high fructose corn syrup), galactans (beans, lentils, and legumes, such as soy), polyols (found in apples, apricots, cherries, nectarines, peaches, pears, prunes, watermelon, blackberries, avocados, mushrooms, and artificial sweeteners, such as mannitol, soribtol, and xylitol), and lactose (dairy).

For more on the low FODMAPS diet, please refer to the Stanford Digestive Health Center Nutrition Services website.

At this point my GI symptoms are under control on a gluten free, soy free, sulfite light, and “modified” paleo diet, so I am not going to adopt a strict low FODMAPs diet, nor any other I.B.S. treatments, unless I develop symptoms that warrant it. However, reviewing I.B.S. has reminded me that my periodic episodes of digestive discomfort may actually be due to I.B.S. symptoms as opposed to “glutenings.” I spent a lot of time during my first year after diagnosis trying to figure out why I kept getting “glutened” by GF foods, such as soy flour, Gatorade, lentils, and cranberries. Looking back, I was likely having I.B.S. type symptoms from FODMAPs. Also, it is entirely possible that the GI discomfort that I experience from ingredients such as xanthan gum and carrageenan may be due to I.B.S. as well (as opposed to Celiac Disease).

A dual diagnosis of I.B.S. and Celiac Disease may well explain why many of us have multiple food intolerances, symptoms of leaky gut, and/or better responses to probiotics than others with Celiac Disease. Is I.B.S. a manifestation of an innate immune response to both gluten and other food proteins in some of us with Celiac Disease? Is it I.B.S. that actually causes a leaky gut in some of us or is it a leaky gut which causes I.B.S. symptoms? I hope that we will someday have answers. In the meantime, I hope that we can all find the best diets for our individual needs and intolerances without having to go too crazy or jumping through too many hoops.

Happy Spring to all of you!

Sun Dogs, Celiac, and Gratitude

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The sun was setting as I was driving to meet a friend for dinner last night, and I noticed that there was what looked like a multi-colored beam of light going almost all the way around the sun. I was so enthralled with staring at it that I missed my exit twice! When I got home I searched the internet and found that the phenomenon, called a parhelion (plural is parhelia), is due to atmospheric ice crystals which act like giant prisms. When the beams are not totally connected, they are called “sun dogs.”

My friend and I shared a fabulous meal and as I drove home I reflected on how grateful I am for my family, friends, faith, health, and the foods and beverages that I can (and do) eat and drink.

Here is my list of foods I am thankful I can eat (in no particular order):

• fruits (apples, berries, clementines, grapes, peaches, melons) • vegetables (kale, spinach, sweet peas, tomatoes, eggplant, zucchini) • chocolate • eggs (and bacon) • fish, shrimp, and non-processed seafood • fresh squeezed lemonade • aged cheese • meats such as chicken, pork, lamb, and lean beef • sweet potatoes, squash, and yams • Jelly Bellies • homemade chocolate, cranberry scones (adapted from this fabulous recipe) • popcorn and kettle corn • Against the Grain baguettes • green, leafy salads • all types of nuts (as long as ordered from nuts.com) • GF oats and oatmeal • gelato • corn tortillas and many Mexican foods • organic wine • chickpeas, rice, and other beans • fresh herbs like basil, cilantro, and rosemary • GF Thin Mint cookies from Happy Bellies Bake Shop

I will leave you with the Shin Buddhist Food Prayer (in Japanese and English):

Before meals recite: Ita Da Ki Masu. I take this nourishment in gratitude (to all beings).

After meals recite: Go Chi So Sama. Thank you in deepest gratitude (to sustain my life).

Thank you for reading! What foods are you thankful to be able to eat?

Delay in Diagnosis of Celiac Disease

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This is my first grade photo. This was taken right before I began to show signs and symptoms of Celiac Disease. Although it takes, on average, 10 to 13 years after the initial onset of symptoms for a patient with Celiac Disease to be diagnosed, in my case it took almost 30 years.

Undiagnosed, and hence, untreated, Celiac Disease is associated with anemia, osteoporosis, arthritis, infertility, central nervous system damage, and the development of other autoimmune diseases. Celiacs with longstanding exposure to gluten are also at an increased risk of cancer of the digestive system. Although some of these problems, such as anemia and infertility, are reversible once gluten free, others are not. My autoimmune thyroid disease (Hashimoto’s thyroiditis), which I suspect is due to decades of gluten exposure, will never go away. Through the internet I have interacted with tons of other people with Celiac Disease with long delays in diagnosis (some not until their 50s or 60s). Anecdotally, it seems like a lot of us have multiple autoimmune issues, such as lupus, multiple sclerosis, fibromyalgia, and/or irritable bowel syndrome, as well as multiple food intolerances. It is unclear whether or not we would have developed these additional autoimmune problems had we removed gluten from our diets decades earlier, when we first started to show signs and symptoms of Celiac Disease. My gut tells me that we would have…

There was an interesting study published in Wales in 2007 in which the medical records of patients with Celiac Disease were reviewed. Celiac patients had a significant increase in number of subspecialist consultations in the years before diagnosis, seeing on average 5 different consultants. People with Celiac Disease also had symptoms of depression, anxiety, anemia, and diarrhea in much higher numbers than patients without Celiac Disease prior to diagnosis; 41% had a history of depression and/or anxiety. Swedish researchers examined the quality of life of 1500+ patients with Celiac Disease, both pre- and post-diagnosis, and found, not surprisingly, an improved quality of life for Celiac patients once diagnosed and treated (see link).

Last of all, a case report of a women diagnosed with Celiac Disease in her mid-forties (named Mrs. J) was published in a large medical journal called JAMA in 2011. Mrs. J’s main symptoms of Celiac Disease were recurrent miscarriages and chronic anemia. While I highly recommend that all of you read the article if you can, I am going to cut and paste a few of Mrs. J’s questions after diagnosis and the experts’ answers to her:

Could my miscarriages have been related to celiac disease? Currently the typical newly diagnosed patient with celiac disease is a woman around the age of 40 years who has had symptoms of celiac disease for over a decade. Given that active celiac disease has nutritional and direct inflammatory consequences on fertility, the reproductive life of many patients is irreversibly affected. In particular, the risk of miscarriage appears higher in women with untreated celiac disease compared to the general population. For these reasons, clinicians should maintain a very low threshold for celiac disease testing in this population.

Has my body sustained any irreversible damage from celiac disease over the years? The small intestinal mucosa has enormous regenerative capacity in both health and disease. Even individuals with longstanding, severe celiac enteropathy can expect to achieve complete or near complete intestinal healing with gluten avoidance and nutritional support, although the length of time to healing varies from less than one year to more than five years and healing is associated with younger age at diagnosis and improved GFD adherence. Outside of the intestine, however, healing is not always assured. A number of extraintestinal manifestations of celiac disease such as dermatitis herpetiformis, anemia, and joint pain, typically improve significantly or resolve within the first year of treatment, as was seen in Ms. J. One of the most common associations with celiac disease is reduced bone mineral density (BMD) which is seen in at more than 50% of patients at diagnosis. Although there is often a significant improvement in BMD over the first year of treatment with a GFD, up to 21% of patients will have persistent osteoporosis. There are multiple neurologic manifestations of celiac disease, some of including peripheral neuropathy and headaches which resolve, while case studies suggest that other manifestations including ataxia, may stabilize but rarely improve. Finally, there is a potential increased risk of secondary autoimmune disorders related to longstanding untreated celiac disease, and once triggered, these will not respond to gluten withdrawal.

My hope is that no child with current symptoms of Celiac Disease will have to wait 20+ years for diagnosis, like so many of us did. We need to prevent Celiac-associated problems, such as infertility, neurologic complications, and other autoimmune diseases, from developing in the first place, so that children with Celiac Disease can have an improved quality of life as adults!

References:

1. A case-control study of presentations in general practice before diagnosis of coeliac disease. Cannings-John R, Butler CC, Prout H, Owen D, Williams D, Hood K, Crimmins R, Swift G. Br J Gen Pract. 2007 Aug; 57(541):636-42.

2. Delay to celiac disease diagnosis and its implications for health-related quality of life. Norström F, Lindholm L, Sandström O, Nordyke K, Ivarsson A. BMC Gastroenterol. 2011 Nov 7;11:118.

3. Celiac disease diagnosis and management: a 46-year-old woman with anemia. Leffler D. Source Department of Gastroenterology, Beth Israel Deaconess Medical Center, and Department of Medicine, Harvard Medical School, Boston, Massachusetts 02215, USA. dleffler@caregroup.harvard.edu. JAMA. 2011 Oct 12;306(14):1582-92.

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

1 Reply

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!

Happy Sulfite Intolerance

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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):

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!

Probiotics and Celiac Disease

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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.

Why I Love Being Gluten Free

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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!

What your doctor may possibly be reading about Celiac Disease

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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…

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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

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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

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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.

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

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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….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Can “Gluten-Free” Make you Skinny?

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

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

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

My criticisms of the article are as follows:

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

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

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

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

Gluten is _________ (Fill in the Blank)

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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?

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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.

Just for Fun

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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!

The Patient Celiac

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

Category Archives: Uncategorized

Nonresponsive Celiac Disease

“Up to Date” Management of Celiac Disease in Adults

So you just found out that you have Celiac Disease….now what?

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

Socializing and Socca Bread

Instructions

It is Possible to Have Both Celiac Disease and I.B.S.

Sun Dogs, Celiac, and Gratitude

Delay in Diagnosis of Celiac Disease

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

Happy Sulfite Intolerance

Probiotics and Celiac Disease

Why I Love Being Gluten Free

What your doctor may possibly be reading about Celiac Disease

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

The Prevent Celiac Disease Study

Eosinophilic Esophagitis and Celiac Disease

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

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

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

Can “Gluten-Free” Make you Skinny?

Gluten is _________ (Fill in the Blank)

Why are 97% of American Celiacs Undiagnosed?

Just for Fun