Monthly Archives: April 2013

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Celiac Disease and the Thyroid Gland

If you have Celiac Disease, it is important that you know a bit about your thyroid gland, as you are at a high risk of autoimmune thyroid disease. Experts estimate that between 8 and 12% of people with Celiac Disease have, or will eventually develop, problems with their thyroid gland. Conversely, between 3 and 5% of people with autoimmune thyroid disease will develop Celiac Disease. I was diagnosed with Hashimoto’s Disease (hypothyroidism) in 2003, seven years before my Celiac diagnosis.

The thyroid gland is a butterfly-shaped gland that is present in the neck region, just under the region of the “Adam’s apple,” which is made up of two lobes (see diagram).

Illu_thyroid_parathyroid

Our thyroid glands secrete hormones that regulate metabolism, play a role in the growth and development of our bones and muscles, and impact brain and heart function. Thyroid gland dysfunction can lead to a rapid decline in health. Prior to my diagnosis with Hashimoto’s Disease, I had a 4 to 6 month history of overwhelming fatigue, dry skin, puffiness around my eyes, hair thinning, mental sluggishness, and feeling cold all of the time. I was about to scan and put in a photo of myself in the weeks leading up to my diagnosis, but I look so atrocious that I did not want to scare any of you. It is available upon request!

In Hashimoto’s Disease, the body makes auto-antibodies which lead to thyroid inflammation and destruction, which in turn causes the the thyroid to be under-active (also called hypothyroidism). Hashimoto’s is the most common autoimmune thyroid disease that is associated with Celiac Disease. Common symptoms associated with hypothyroidism include lethargy, depression, muscle cramps, constipation, dry skin, cold intolerance, and/or weight gain. The treatment for hypothyroidism is to take synthetic thyroid hormone, which is called levothyroxine. The brand name for levothyroxine is Synthyroid.

If you are started on levothyroxine, it is important to have your thyroid hormone levels checked frequently, so that your dose can be adjusted as needed. Pregnancy, the postpartum period, lactation, menopause, and other events associated with hormonal changes can also effect the thyroid gland, so it is important to have your thyroid hormone levels monitored closely during these times.

Once I went gluten free, my levothyroxine dose decreased from 150 mcg/day to 125 mcg/day. From the reading that I have done, this is not unusual, and many Celiacs experience a need for less thyroid hormone once off of gluten. However, it is very unusual for hypothyroidism to ever totally resolve. This means that if you are diagnosed with Hashimoto’s Disease, you should anticipate being on thyroid hormone replacement therapy for the rest of your life.

A few other things which I have learned about levothyroxine: 1. Make sure to take it on an empty stomach (I take mine first thing in the morning, about 30 to 45 minutes before breakfast), 2. To take separately from vitamin and mineral supplements, as some can interfere with its absorption, and 3. Make sure that the levothyroxine which you are taking is gluten free.  I have been taking generic levothyroxine manufactured by Lannett since October 2012 without any issues. www.glutenfreedrugs.com is a great resource to check out the GF status of drugs and supplements.

Grave’s Disease is the most common cause of hyperthyroidism, or overactive thyroid. In this disease, auto-antibodies stimulate the thyroid gland to produce an excess of hormones. Hyperthyroid symptoms are the opposite of those seen in Hashimoto’s Disease and include weight loss, elevated body temperature, irritability, tremors, heart palpitations, and insomnia. Treatment options for Grave’s Disease include antithyroid medications, radioactive iodine, and surgery. For more on Grave’s Disease, please see the following link (taken from the womenshealth.gov website).

The main test used to screen for thyroid problems and monitor thyroid function is called a TSH (short for thyroid stimulating hormone). In hypothyroidism, the TSH is too high, and in hyperthyroidism, the TSH is too low. In most cases test results should be available within 24 hours of having blood drawn. T4 and T3 levels are also monitored closely during diagnosis and treatment.

My hypothyroid symptoms improved dramatically within one week of starting on Synthroid after my diagnosis with Hashimoto’s Disease. I urge you to have your TSH checked if you or a loved one are experiencing any unusual symptoms which may be due to thyroid dysfunction.

The bottom line is that if you have Celiac Disease, you need to have your thyroid function monitored, and if you have autoimmune thyroid disease, you should strongly consider being screened for Celiac Disease, especially if any concerning symptoms develop.

For more information, please check out the following links:

1. Celiac Disease and Autoimmune Thyroid Disease. Ch’ng, C., et al. Clin Med Res. 2007; 5(3): 184-192.

2. “Celiac Disease, Thyroid Disease Often Found Together. Two Autoimmune Disorders Could Share Common Trigger.” By Jane Anderson, About.com Guide; updated January 19, 2012.

3. “Celiac and the Thyroid.” NFCA website: www.celiaccentral.org. Accessed 04/23/2013.

4. Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: an Italian multicenter study. Sategna-Guidetti C, Volta U, Ciacci C, Usai P, Carlino A, De Franceschi L, Camera A, Pelli A, Brossa C. Am J Gastroenterol. 2001 Mar;96(3):751-7. See link.

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Update on Celiac Disease Screening in Infants and Toddlers

There are multiple reasons why a young child may need to be evaluated for Celiac Disease. The most obvious reason is if he or she has symptoms, such as chronic diarrhea, poor growth, and/or anemia. Other reasons include having a first degree relative (parent or sibling) who has Celiac Disease or having another autoimmune disorder, such as Type 1 diabetes.

The main blood tests to screen for Celiac Disease are tissue transglutaminase IgA (TTG IgA) antibodies and endomysial IgA (EMA IgA) antibodies. These tests are highly sensitive, which means that if the tests are negative, Celiac Disease can be ruled out most of the time. The problem with using these tests in infants and toddlers is that the sensitivity of these tests is much lower for children under the age of 2 than it is for older children and adults. Some believe that this is because young children with Celiac Disease have not had enough time to develop TTG and EMA IgA antibodies which can be measured. Needless to say, there are probably many toddlers with Celiac Disease who are walking around undiagnosed because they did not have elevated TTG and/or EMA IgA antibodies when they were tested.

Deamidated gliadin peptides (DGPs) are a new test for antibodies against gliadin and are being used with increased frequency for screening for Celiac Disease in the U.S. and Europe. A group of Italian researchers recently studied the utility of using DGP IgG antibodies to screen for Celiac Disease in children under the age of 2. They found that 100% of children under the age of 2 with biopsy-proven Celiac Disease had abnormally high DGP IgG antibodies on blood testing. They also found that DGP antibodies were abnormally high in 4 toddlers who had malabsorption (diarrhea) but who did not have a biopsy consistent with Celiac Disease. One of the 4 children with an abnormal DGP did have mild villous blunting and eventually developed Celiac Disease. The other 3 children with diarrhea and elevated DGPs all had the genes that predispose to Celiac Disease. They plan to follow these 3 children closely for the development of Celiac Disease. The researchers also found that DGP levels correlate very well with the extent of damage on the duodenal biopsies of the children with Celiac Disease and postulate that in the future, children with markedly elevated DGP antibodies may not need to be biopsied for diagnosis with Celiac Disease.

Out of curiosity, I went to the internet sites of some of the major labs that perform Celiac Disease blood screening tests. Labs which DO include DGP IgG antibodies on their celiac panels include Prometheus, Labcorp, ARUP, and Mayo Medical Labs. Labs which DO NOT include DGP IgG antibodies on their celiac panels include Kimball Genetics and Quest Diagnostics (as of 4/17/2013).

If you suspect that your young child may have Celiac Disease, but he or she did not have positive antibodies, it may be helpful to find out which lab their blood was sent to so that you can learn whether or not DGP IgG antibodies were part of the testing.  I recommend that you discuss any concerns with your child’s physician.

References:

1. Antibodies to deamidated gliadin peptides: an accurate predictor of celiac disease in infancy. Amarri, S., et al. J Clin Immunol. Published online 4/5/2013.

2. ARUP Consult. A Physician’s Guide to Laboratory Test Selection and Test Interpretation. Celiac Disease. www.arupconsult.com/assets/print/CeliacDisease.pdf.

3. Screening for celiac disease in average-risk and high-risk populations. Aggarwal, S., Lebwohl, B, and Green, P. Therap Adv Gastroenterol. Jan 2012; 5 (1): 37-47.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

References:

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

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

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

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

 

Courtesy of www.wholeliving.com

Socializing and Socca Bread

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.

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

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!