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What Does Living with Celiac Disease Mean For Me My Family

Online Health Chat with Laura Jeffers, MEd, RD, LD

December 13, 2011

Introduction

Celiac disease affects 1 percent of the population worldwide. One in every 133 people in the U.S. is affected with celiac disease – children, adults, men and women. Celiac disease is known to be a life-long genetic, autoimmune disease, and since gluten has been identified as the offending trigger, once a diagnosis has been made, treatment for celiac disease is a life-long adherence to a gluten-free diet.

Registered dietitian, Laura Jeffers, MEd, RD, LD, answers your questions about what living with celiac disease means for you and your family. Learn how to find foods that are naturally gluten-free, how to dine out and travel on a gluten-free diet.

Laura Jeffers is an outpatient clinical manager and primary metabolic dietitian at Cleveland Clinic. She joined Cleveland Clinic in 2004 and has experience in general pediatric nutrition, weight loss, allergies, celiac disease, and weight management. Her nutrition expertise includes medical nutrition therapy for in-born errors of metabolism, weight loss, diabetic diet education, and gastrointestinal disorders. She has been the primary metabolic dietitian at Cleveland Clinic for seven years and is actively involved in Genetic Metabolic Dietitians International (GMDI).

To make an appointment with Laura Jeffers, MEd, RD, LD, or any of the specialists in Cleveland Clinic’s Digestive Disease Institute, please call 866.382.2352. You can also visit us online at clevelandclinic.org/nutrition.

Cleveland_Clinic_Host: Welcome to our Online Health Chat with Cleveland Clinic specialist Laura Jeffers, MEd, RD, LD. We are thrilled to have her here today for this chat. Let’s begin with some of your questions.


Celiac Disease Basics

plato: What exactly is celiac disease?

Laura_Jeffers: Celiac disease is an autoimmune disorder that is a permanent intolerance or reaction to anything with gluten in wheat, rye, and barley. There is no CURE – only treatment. Individuals diagnosed with celiac disease must avoid all food products, medicines, vitamins, and even glue on envelopes that may contain gluten.

bff: What is the scope or incidence of celiac disease?

Laura_Jeffers: About 2.2 million Americans and more than 10,000 children are diagnosed annually with celiac disease. It affects 1 in 133 Americans. Actually, 97 percent of individuals with celiac disease go undiagnosed. Individuals with celiac disease are at a great risk of gastrointestinal cancer, particularly lymphoma.

30_: How is celiac disease diagnosed?

Laura_Jeffers: Celiac disease is diagnosed with blood tests and a biopsy of the small intestine. The biopsy is the gold standard for diagnosis. Genetic testing does not confirm the disease. It only identifies potential predisposition for the disease.

lld: How is celiac disease treated?

Laura_Jeffers: The only way to treat celiac disease is to follow a gluten-free diet. Gluten is found in many grains, so it is important to know which grains are safe to eat and which to avoid.

All wheat, rye, and barley ingredients must be eliminated. The intestine may take 6 to 12 months to heal.


Symptoms

foco: What are the symptoms of celiac disease?

Laura_Jeffers: There may be no symptoms at all. Others may experience diarrhea, stomach pain, weight loss, irritable bowel, osteoporosis, skin rash (very itchy with blisters), short stature, iron deficiency anemia, lactose intolerance, mood swings, etc.

Jill: What are the difference in symptoms between celiac disease and non-celiac gluten intolerance?

Laura_Jeffers: Celiac disease is activated by eating gluten, proteins found in wheat, rye, barley, and other related grains. The symptoms for each individual vary, and the only way to be sure that you have celiac disease is to have a blood test to measure antibodies and a confirmatory intestinal biopsy.

hadley: Can you talk about lowered heart rate as a symptom? Does diet help re-increase the heart rate or is some form of medication going to be needed?

Laura_Jeffers: I would recommend discussing these symptoms with your physician as they will be able to address them accordingly.


Gluten

harken: What do you mean by ‘gluten’?

Laura_Jeffers: Gluten is a protein found in wheat, rye, and barley. Think of it as a portion of protein that forms the structure of dough. Gluten causes the T-cells to react and think of it as an enemy, causing the lining of the intestine to become inflamed and making it unable to absorb nutrients (protein, fat, vitamins, minerals, etc.).

fun_fun: On food labels, is gluten-free the same as wheat-free?

Laura_Jeffers: No, because wheat-free products many still contain barley or rye, which are two grains that must be eliminated in a gluten-free diet. Gluten-free literally means that the product does not contain wheat, barley, or rye. Sometimes, a food label will state that there is no wheat in the product, but are there potential hidden sources of wheat?

mickey: Sometimes a food label will state that there is wheat in the product, but are there potential hidden sources of wheat?

Laura_Jeffers: Wheat is often used as a thickening agent and a binder in many medications. Wheat may also be found in seasonings, sauces, marinades, soy sauce, soups, salad dressings, and some packaged flavored rice.

viko: Do some medications have gluten?

Laura_Jeffers: Yes. Some medications, prescription or not, can contain gluten fillers. It is important to discuss this with your pharmacist or sometimes even the manufacturer of the medication.

blake: What is the difference between gliadins and the glutenins?

Laura_Jeffers: Gliadins are the protein peptides (prolamins) found in wheat (alcohol soluble). Gluten is the protein from wheat, rice, corn, and other grains; a vegetal albumin.


Gluten-free Diet

crayons: If I follow a gluten-free diet, will I lose weight? Is it safe even if I have not been diagnosed?

Laura_Jeffers: No. Following a gluten-free diet is not meant for losing weight. In fact, many gluten-free products are actually packed with sugar, fat, and salt. They may also lack certain essential vitamins and minerals.

As far as safety of a gluten-free diet, you must know that wheat flour is fortified with vitamins, minerals, and nutrients that may be missed if gluten is removed from the diet.

jake: As a vegetarian, is it okay to follow a gluten-free diet?

Laura_Jeffers: Actually, the high fiber content of a typical vegetarian diet is a great complement to a gluten-free diet. A vegetarian diet may include more nutritious gluten-free whole grains and flours, such as quinoa, flax meal, and garbanzo beans, which are additional sources of iron, calcium, and B vitamins.

mmm: Can I still drink alcohol?

Laura_Jeffers: Wines, pure liqueurs, and gluten-free beer are okay. You should avoid beer, ale, lager, and wine coolers.

hobon: Are there any concerns to keep in mind when on a gluten-free diet such as there are with a vegetarian diet (insuring adequate protein intake, etc.)?

Laura_Jeffers: Yes. It is very important to consume protein, and most natural protein sources do not contain gluten. However, it is important to focus on consuming fruits and vegetables to consume essential vitamins and minerals and adequate fiber. Also focus on consuming calcium-rich foods/beverages.

hobon: Are there any other benefits to being on a gluten-free diet beyond being a treatment for celiac disease?

Laura_Jeffers: In my practice as an RD, we utilize the gluten-free diet for celiac disease treatment and if there is a gluten intolerance or allergy diagnosed.


Reactions

play_time: Is there such a thing as gluten withdrawal? Newly diagnosed and have just eliminated gluten from my diet. It has been about two weeks now and my whole digestive system still seems to be off. I am losing weight and have a loss of appetite. Is this normal or should I be concerned?

Laura_Jeffers: Your body is attempting to heal and this will take time. You have changed your diet and may not be consuming as many calories. You will need to be sure to eat even if you are not hungry to ensure that you can maintain a healthy weight. If the lack of appetite persists, I would recommend following up with a physician. I would also recommend seeing a dietitian to review your current intake, and he or she will do a nutrition assessment.

punkin: I have been gluten-free for about a year now. Last week, I caved and had a dessert with gluten. Despite how much I enjoyed it at the time I ate it, I totally regretted it after! My reaction was so much worse than before I was diagnosed? Why is that?

Laura_Jeffers: The villi in your GI tract had healed. The gluten damages and destroys the villi and this interferes with the body's ability's absorb.

ridley: When eating gluten after going gluten-free, how long do the ‘consequences’ last? Hours, days, what? The holidays are coming up. If I fall off the diet, how bad will the consequences be?

Laura_Jeffers: Each person varies. However, whether you feel the symptoms or not, your body is being damaged by consuming gluten and, over time, this will lead to long-term effects.

aigil: After contamination with gluten, how long can it take to be okay again? My daughter has been having problems since being contaminated and it's over eight weeks now. She's doing better finally.

Laura_Jeffers: You may want to take a closer look at her overall intake, as there may be a few hidden sources of gluten causing this. I am surprised that one incident would take eight weeks to improve.

babyb: We now have a gluten-free house, even though my husband can eat with no problems. However, both of us seem to have a problem with red meat and greasy foods, even those that are only slightly greasy. We run to the bathroom with diarrhea. Is this because the gluten-free diet has changed our digestive system in some way? We did not used to have this problem.

Laura_Jeffers: Based on the information you have provided, there is a chance that your body is still in its healing stages, as this can take many months. In general, greasy foods and red meat have a higher fat content, which may be contributing to your GI symptoms.


Related Concerns

pepper_pot: Is it normal for your tastes to change after going on a gluten-free diet for a period of time? There are things (like chocolate) that I have really lost the taste for.

Laura_Jeffers: I have not heard of this as a common symptom, but you may have something else going on. If your taste change keeps up, I would follow up with your MD.

hard_times: Does celiac disease cause hair loss or does a gluten-free diet cause it? I have been experiencing hair loss and I don’t know why.

Laura_Jeffers: Hair loss can happen for multiple reasons. A vitamin or mineral deficiency can cause hair loss and untreated celiac disease may lead to deficiencies.

ppr: When I eat gluten, I get bone and joint pain, and also some neurological symptoms besides the digestive complaints. Is damage being done to these other areas of my body when I eat gluten? Can it be serious? I know what it can do to the digestive tract, but don’t know much about other parts/systems in the body.

Laura_Jeffers: Joint pain is a sign/symptom of celiac disease, along with dental enamel abnormalities and fatigue, to name a few. Damage can be done to the entire body, as physicians now believe celiac disease to be a multi-system/multi-symptom disease, affecting not only the gastrointestinal tract, but also the neurologic, endocrine, orthopedic, reproductive, and hematologic systems.

ppr: In regard to my previous question about other body functions that are affected by celiac disease, will making changes in the diet help with those other symptoms/effects as well?

Laura_Jeffers: Yes, a gluten-free diet for life is the treatment.

dahetm: I have heard of cases where someone with diabetes also comes down with celiac disease. Is this common?

Laura_Jeffers: Celiac disease is an autoimmune disease, and there is an increased risk for other autoimmune diseases to come alongside of celiac disease, including diabetes.

lalala: Does treatment for celiac disease include help with the mental stress, depression, etc. that can be associated with such a drastic change in lifestyle/dietary habits? Or is this something I will have to pursue on my own? (Just diagnosed and am on shaky ground.)

Laura_Jeffers: Starting a gluten-free diet can be a very large stress on a person. I would recommend seeing a dietitian to discuss diet options, suggested products, etc. I would recommend talking to a psychologist if you are experiencing depression and other mental stressors.

aigil: Is it common for people suffering from celiac to develop other digestive problems such as lactose intolerance, etc.?

Laura_Jeffers: Yes. It can be common since the micro villi are damaged, which alters ability to absorb. Once a gluten-free diet is initiated, that may resolve.

ld: Have you heard of a correlation between celiac and vitiligo (loss of skin pigment)? I know they are both autoimmune diseases. I asked my dermatologist about it but he wasn't sure.

Laura_Jeffers: I am an RD and this is really out of my scope. I don't have enough experience with your question. I would follow up your GI/MD, as they may have had other patients with these same symptoms.

KatieVH: Concerning pregnancies. Are women with celiac disease putting the baby at an increased risk of any kind?

Laura_Jeffers: I am not a physician and I encourage you to speak to your GI, MD, or OB with your concerns.


Genetics

sunny: Does celiac disease run in families?

Laura_Jeffers: Celiac disease is inherited, and family members should be tested even if they are asymptomatic (meaning they do not have any symptoms.) Approximately 5 percent to 15 percent of children and siblings of individuals with celiac disease will have it occur. In 70 percent of identical twins, both twins will have the disease. It is also noted that family members that have other forms of autoimmune disease have a 25 percent risk of having celiac disease.


Resources

millie: Any special considerations if I am dining out and attempting to follow a gluten-free diet?

Laura_Jeffers: You can still dine out at restaurants, but you must be aware of some of the following: Choose restaurants with a wide variety of choices. Ethnic restaurants -- such as Mexican, Indian, Thai, or Japanese -- are good choices. Many restaurants will label menu items as ‘gluten-free.’

You may want to call ahead and discuss your dietary needs. It is important to be aware of potential cross contamination of items due to preparation methods (grills, utensils, fry oil, ingredient fillers, etc.)

Gluten-free restaurants can be found with a variety of web searches: http://www.glutenfreerestaurants.org/ and http://neohioceliac.com/restaurants.html are good places to start. They also list a number of things to consider when dining out.

brother: Where can I find a list of ingredients and foods to avoid that may contain gluten?

Laura_Jeffers: Some foods are naturally gluten-free: milk, butter, cheese, fresh/frozen/canned fruits and vegetables, fresh meats, fish, poultry, eggs, beans, seeds, nuts, corn, and rice.

You may wish to meet with a registered dietician to discuss the foods to avoid. Excellent lists may be found on many websites, including celiac.org and Cleveland Clinic Digestive Disease Resources .

good_luck: Where can I find resources about celiac disease?

Laura_Jeffers: There are many local and national resources available. There are even local support groups. Excellent information can be found at neohioceliac.com (Celiac Disease Foundation Northeast Ohio Chapter); celiac.org (The Celiac Foundation); and celiaccentral.org (National Foundation for Celiac Awareness). For an individualized assessment and eating plan you may call Cleveland Clinic for an appointment with a registered dietician at 216.444.3046.

poppers: Is there somewhere to go for a list or do you have a list of guidelines for traveling?

Laura_Jeffers: Start with celiac.org. They have a great resource list.


General Questions

KatieVH: I've been refraining from gluten because I THINK it may be responsible for some of the problems I was having, but I was never professionally diagnosed. What type of doctor should I see to be tested - my primary? A dietitian? An allergist?

Laura_Jeffers: You should make an appointment with a gastroenterologist. However, you will need to be consuming gluten at the time of testing. I would recommend seeing a dietitian once you have a diagnosis and plan from GI physician.

lalala: Am going to my first dietitian appointment since diagnosis. What should I expect and are there any questions you suggest I should ask? I am feeling a little overwhelmed.

Laura_Jeffers: I am happy to hear that you have appointments with an RD. Make a list of questions prior to your appointment that you would like to know more about. Also, it may be a good idea to bring in food labels if you have ingredient questions. The RD will gear the education toward your needs.

dahetm: With the baking season upon us, is there a brand of gluten-free flour that tastes better than others? Some of the gluten-free items just don't taste good.

Laura_Jeffers: You are right. There are so many products available to choose from. The gluten-free products containing sorghum will help to make the baked goods "stickier" since gluten is the sticky part of the protein.

alli: How important is it to switch to gluten-free soaps, lotions, shampoos, etc.? Isn't it more important to just make sure to go gluten-free in your diet?

Laura_Jeffers: Dermatitis Herpetiformis is diagnosed by a biopsy of a skin lesion and staining for IgA. If you are diagnosed with this, it would be important to avoid shampoos/soaps.

Warbler: Are there any clinical trials being done on refractory sprue? Is aloe vera juice helpful to people with celiac and/or refractory sprue?

Laura_Jeffers: To my knowledge there are currently no live trials being done on refractory sprue. You can learn more about this on clinicaltrials.gov.


Closing

Cleveland_Clinic_Host: I'm sorry to say that our time with Laura Jeffers, MEd, RD, LD, is now over. Thank you again, Ms. Jeffers, for taking the time to answer our questions today about celiac disease.

Laura_Jeffers: Thank you very much for your great questions.


More Information

To make an appointment with Laura Jeffers, MEd, RD, LD, or any of the specialists in Cleveland Clinic’s Digestive Disease Institute, please call 866.382.2352. You can also visit us online at clevelandclinic.org/nutrition.

You may request a remote second opinion from Cleveland Clinic through the secure eCleveland Clinic MyConsult Web site. To request a remote second opinion, visit eclevelandclinic.org/myConsult.

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