The Patient Celiac

Celiac Disease And The Thyroid Gland

Wed, 24 Apr 2013 04:02:00 +0000

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).

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 gluten-free 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.

Let's Talk About Celiac Disease And Infertility

Mon, 18 Mar 2013 20:01:00 +0000

One of my favorite Celiac Disease-related pages on Facebook is that of the University of Chicago’s Celiac Disease Center. One of the first “tidbits” that I read on this page, after discovering it last fall, was the following statement: “Women who have experienced persistent miscarriages or infertility without a known medical cause should be tested for celiac disease.” I had no idea that there was such a strong association between Celiac Disease and infertility until I read this sentence.

I have encountered tons of women, both professionally and personally, who have struggled to get pregnant and/or carry a pregnancy to term. Recent estimates have shown that up to 10.9% of women of childbearing age (15-44) in the U.S. seek treatment for infertility in any given year. I wrote a post about the effects of Celiac Disease on pregnancy in January 2013, and since then have read quite a bit more about topic. Here are some things which I have learned about Celiac Disease and infertility:

-Studies published within the last two years have shown that between 6 and 10% of women with unexplained infertility have (undiagnosed) Celiac Disease. Previously, it was believed that the numbers were much lower, around 2-4%.

-Many women with Celiac-related infertility do have a prior history of irritable bowel syndrome or other GI complaints, but they do not necessarily have these symptoms while undergoing treatment for infertility. It is well known that signs and symptoms of Celiac Disease can appear and then disappear for years (and even decades) before diagnosis.

-It is believed that Celiac impacts fertility due to a combination of malnutrition (nutrient deficiencies interfere with sex hormone function) and the formation of small placental blood clots (thromboses) due to Vitamin B12 deficiency. It has also been shown that anti-TTG antibodies do bind to placental tissues and can interfere with placental formation and function.

-If a woman has infertility due to Celiac Disease, fertility should resume between 3 to 9 months after going gluten free.

-Many researchers conclude that all women with unexplained infertility should be screened for Celiac Disease. Based on discussions with several people, this does not seem to be happening in all parts of the U.S.

The average cost for one cycle of IVF is $12,400. Many women go through multiple rounds of IVF before conceiving. Surrogacy can cost up to $100,000. If the research studies are correct, many women who are paying for these expensive treatments may actually have undiagnosed Celiac Disease. We need to continue to inform and discuss this with our families, friends, and neighbors as so many are potentially impacted.

General infertility statistics are found on the CDC site: http://www.cdc.gov/nchs/fastats/fertile.htm.

Other references which may be of interest:

1. Undiagnosed celiac disease in women with infertility. Machado AP, Silva LR, Zausner B, Oliveira Jde A, Diniz DR, de Oliveira J. J Reprod Med. 2013 Jan-Feb; 58(1-2):61-6

2. Increased prevalence of celiac disease in patients with unexplained infertility in the United States. Choi JM, Lebwohl B, Wang J, Lee SK, Murray JA, Sauer MV, Green PH. J Reprod Med. 2011 May-Jun; 56(5-6):199-203.

3. Immediate effect on fertility of a gluten-free diet in women with untreated coeliac disease. Raffaella Nenna, Maurizio Mennini, Laura Petrarca, Margherita Bonamico. Gut 2011;60:1023-1024.

4. Anti-tissue transglutaminase antibodies from celiac patients are responsible for trophoblast damage via apoptosis in vitro. Di Simone N, Silano M, Castellani R, Di Nicuolo F, D’Alessio MC, Franceschi F, Tritarelli A, Leone AM, Tersigni C, Gasbarrini G, Silveri NG, Caruso A, Gasbarrini A. Am J Gastroenterol. 2010 Oct; 105(10):2254-61.

5. Infertility Treatment in a Population-Based Sample: 2004–2005. Sara E. Simonsen, Laurie Baksh, Joseph B. Stanford. Maternal and Child Health Journal. May 2012, Volume 16, Issue 4, pp 877-886.

The Gluten Contamination Elimination Diet (Summary Of Dr. Fasano's Recent Paper)

Sat, 09 Mar 2013 05:31:00 +0000

As many of us already know, there are some celiacs who are “refractory” and continue to have ongoing symptoms after going gluten free. In addition, there are a bunch of us who are “super sensitive” in terms of reactions to gluten cross-contamination. I am one of the super sensitives. Not too long ago I had a reaction from eating one bite of a Trader Joe’s “no gluten ingredients” brownie which I had prepared in my own gluten free kitchen for a potluck.

Just last week, Dr. Fasano and colleagues published a research paper on the effects of 3-6 months of a diet of exclusively whole, unprocessed foods on the symptoms of celiac patients who had no improvement while eating strictly gluten free. In this study patients were considered to have non-responsive celiac disease (NRCD) if they failed to respond to the gluten free diet or had a recurrence/relapse of symptoms despite being gluten free. Steroids are currently the standard of care for treating NRCD, which as we know can have serious side effects.

The researchers coined their diet the “Gluten Contamination Elimination Diet.” Here is the breakdown of foods with are allowed and prohibited on this diet:

Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade.

Not allowed: millet, sorghum, buckwheat or any other grains, seeds, or flours; frozen, canned, or dried fruits and vegetables; lunch meats; ham; bacon; seasoned or flavored dairy products; processed cheeses; flavored and malt vinegars.

Basically, all processed foods are eliminated. Of note, dairy is not reintroduced until week 4 of the diet.

17 patients with NRCD, all female, were placed on this diet for an average of 3-6 months. 14 of the 17 (82%) significantly improved on the Gluten Contamination Elimination Diet. Of those who did have biopsies performed after the diet, all but one had resolution of their villous atrophy. This is important information as there have been a lot of recent studies showing that persistent villous atrophy is common in celiac disease. Most of the patients in this study were able to eventually resume a “traditional” gluten free diet.

It has taken me over 3 years, and a lot of trial and error, to figure out the foods which my body loves and hates. Interestingly enough, my body’s food preferences are almost identical to the foods on the “allowed” list in this diet. Had I known about this diet, and adhered to it when I was first diagnosed, it would have saved me a ton of pain and anguish. I am optimistic that this diet (or a similar version) will become the standard of care for those newly diagnosed with Celiac Disease, and I hope that this happens sooner than later. If we work together, we can get the word out!

Reference: “Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients.” BMC Gastroenterology. 2013. 13:40 (e-pub).

Non Celiac Gluten Sensitivity

Tue, 12 Feb 2013 01:58:00 +0000

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

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

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

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

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

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

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

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

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

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

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

Celiac Disease And The Innate Immune System

Tue, 12 Feb 2013 01:27:00 +0000

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

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

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

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

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

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

For more information on this subject I suggest the following:

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

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

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

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

Yes, It Is "safe" To Raise Non Celiac Kids Gluten Free

Tue, 05 Feb 2013 05:39:00 +0000

I’ve realized that I have not written for almost a week and I think I am okay with this. When I started this blog two months ago, I anticipated being able to post about once a week, so I think I am on track. Between working full-time, running, and trying to squeeze in some sleep, the main reason  that I have not had time is that I have four small children. I am trying my best to cherish this phase of our family life, as I know that someday I will have four teenagers at once!

None of my kids have Celiac Disease, but I consider them all to be at high risk for its development. Although I was diagnosed when I was 33, I have probably had Celiac Disease since early childhood. My mother also has it, and interestingly enough, was diagnosed after I was. Through conversations with aunts and uncles, it seems there is some “gluten sensitivity” in my deceased dad’s family. Although my husband, Tom, does not have Celiac, we do know that he is HLA-DQ2 positive, as he was tested by his GI doctor.  He has both an aunt and cousin with Celiac Disease as well. If none of my children go on to develop Celiac Disease, I will be truly amazed!

We started off my Celiac journey with a shared kitchen. I read up on this as much as I could after diagnosis, and I had my own “gluten free” cabinet, pasta strainer and pasta pot, cooking utensils, baking dish, etc. I also kept separate gluten-free butter, peanut butter, and other condiments to avoid cross contamination.  I always put my items on a piece of aluminum foil when toasting because I was never able to find the “toaster bags” which people would discuss on the Internet forums. I thought that I was doing everything right and although our gluten-free/non gluten-free set-up did work for a while, I kept on getting sick. In 2012 I developed a peripheral neuropathy, which is persistent numbness and tingling from nerve inflammation, and was evaluated for multiple sclerosis. My neuropathy ended up being Celiac Disease related, as a result of continued exposure to traces of gluten. We made our whole home gluten free in 2012 and I have had minimal problems since then.  My exposure to tiny hands and mouths with gluten crumbs was much more damaging than I could ever have imagined when I was diagnosed in 2010.

Through starting this blog I have been able to interact with a lot of moms with Celiac Disease and/or raising kids with Celiac Disease. Many of us have decided to raise all of our kids gluten free, however, this seems to be controversial.  I have learned that many people are being advised by their doctors that it is not “safe” to raise their non Celiac children gluten free, because they are being told that by doing so that they are depriving their kids of essential vitamins and nutrients.  I have researched this and have not found any evidence that this is the case, as long as gluten free kids are given a wide variety of non-processed, nutrient-rich foods.

Our youngest is now 10 months old and, freakishly enough, has 7 teeth, so she is eating table foods at dinner. We eat a lot of vegetables, fruits, meats, eggs, beans, and fish. Our “starches” consist of potatoes, rice and risotto, squash, and sweet potatoes.  Once a week or so we will make a gluten-free pizza of some sort. Lately we have been making a cauliflower pizza crust which I adapted from a recipe I found on Pinterest (I will post it on the “Recipes” page of this blog soon). We occasionally make tacos, enchiladas and other Mexican foods, pasta or lasagna, and Indian dishes, usually a chicken curry of some sort.  For snacks our kids eat fresh fruit, applesauce, popcorn, dried fruits and nuts, yogurt, string cheese, gluten-free crackers and rice cakes.  We always have a few “treats” in our home, usually Annie’s gluten-free Bunny crackers, ice cream, and a tortilla chip of some sort.  I bake a lot of treats for the kids as well. We’ve made delicious chocolate chunk cookies using almond flour 2 or 3 times in the past week (see link). We’ve said goodbye to a lot of convenience foods like chicken nuggets and frozen macaroni and cheese.

I do not see any evidence that my children are nutritionally deprived. They are growing and thriving, are not anemic, and interestingly enough, my two oldest have grown quite a bit since going off of gluten last year.  I give all of them a calcium and vitamin D supplement once a day, but I have done this for years. We live in the midwest, where vitamin D deficiency is rampant in both kids and adults, and a deficiency is associated with the development of autoimmune diseases.  I have not given them any other vitamins or supplements. I am pretty certain that they are getting enough protein, fat, vitamins, minerals and calories for proper growth and development through their diets.

I am not trying to say that what I am doing for my family is right or best for all families. I am sharing my story in hopes that it may help others to make the decision whether or not to make their entire household gluten free. Looking back, I wish that I would have made the transition much earlier in my journey, as it would likely have prevented me from developing neurologic complications from Celiac Disease. Thank you for reading!

The Effects Of Gluten On The Brain And Nervous System

Thu, 24 Jan 2013 04:35:00 +0000

Most of the articles about gluten and celiac disease I’ve came across in the media have focused on symptoms related to digestion, such as abdominal pain and bloating after eating gluten, and damage to the small intestine. The bulk of the gluten-related discussions on the celiac forums I’ve perused concern questions and answers regarding the diagnosis of celiac disease and tips for following the gluten free diet. There have been several papers published over the last few years about the neurologic effects of gluten exposure for those with celiac disease and non-celiac gluten sensitivity. I do not believe that they have gotten the attention that they deserve in the media or on the forums. I am especially interested in this area as over the last few months I have developed a peripheral neuropathy (nerve damage) related to having celiac disease.

Dr. Hadjivassiliou is one of the leading researchers on neurologic problems related to gluten exposure. Although I have no idea how to pronounce his name, I can tell you that he is on faculty in the Department of Neurology at Royal Hallamshire Hospital in Sheffield, United Kingdom. My favorite paper of Dr. Hadjivassiliou’s is a review article titled, “Gluten sensitivity: from gut to brain,” which was published in the Lancet, a major medical journal, in 2010. In this paper, gluten sensitivity refers to both celiac disease and non-celiac gluten sensitivity. Some of the key points of this paper include the following:

• Most patients with neurologic symptoms related to gluten do not have gastrointestinal symptoms.

• Ataxia (a problem with balance and coordination) and peripheral neuropathy (nerve damage) are the most common neurologic symptoms related to gluten. Up to 25% of celiac patients on a gluten free diet will develop a peripheral neuropathy at some point.

• Patients with neurologic symptoms often have celiac “autoantibodies” on blood testing, usually anti-gliadin (AGA) antibodies and/or tissue transglutaminase (TTG) antibodies. Many patients with these antibodies have non-celiac gluten sensitivity, meaning that they have high celiac antibody levels and symptoms, but no evidence of villous blunting (seen in celiac disease) on small bowel biopsy.

• The average age of onset of gluten ataxia is 53 years and for the gluten-related peripheral neuropathy is 55 years.

• Brain MRI findings can include cerebellar atrophy (loss of volume) and/or white matter lesions which may mimic those seen in multiple sclerosis.

• Neurologic symptoms often improve on a strict gluten free diet but may never resolve completely.

Gluten sensitivity has also been associated with seizures, dementia, and migraines. Obviously, further research on the effects of gluten on the brain and nervous system is needed. I’ve came across many people on the celiac forums who have psychiatric symptoms related to gluten exposure as well, although this has not been well-studied.

It seems especially frightening that many people who develop neurologic problems, like me, do so when they are already on the gluten free diet. This is a reminder that even small traces of gluten can cause serious damage to those of us who are gluten sensitive. If you have any family members or friends who develop ataxia or a peripheral neuropathy of an unknown cause, I urge you to recommend an evaluation for celiac disease and non-celiac gluten sensitivity.

For further reading on the this topic I would suggest the following:

1. “Brain Abnormalities Common in Celiac Disease Patients,” by P. Harrison, published in Medscape Neurology News on September 10, 2012.

2. Dr. Hadjivassiliou’s Lancet Neurology article, “Gluten Sensitivity: From Gut to Brain,” published in March 2010.

3. Living Without Magazine article, “Gluten Attack: Ataxia,” found in the Feb/Mar 2011 issue.

Eosinophilic Esophagitis And Celiac Disease

Mon, 21 Jan 2013 00:51:00 +0000

Eosinophilic Esophagitis, also known as “EE,” is a gastrointestinal disorder that, like Celiac Disease, seems to be increasing in frequency of diagnosis. I first heard of EE 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. While I was learning about EE I had no idea that my dear husband had the very same disease!

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.

Introducing Gluten To The Baby At Risk For Celiac Disease

Sun, 20 Jan 2013 05:26:00 +0000

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

I researched my question and discovered the following:

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

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

Here is some of the science behind what I discovered:

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

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

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

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

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

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

Celiac Disease And Pregnancy

Sun, 20 Jan 2013 05:20:00 +0000

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

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

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

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

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

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

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

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

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

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

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

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

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