Celiac.com 08/20/2022 - It is not much of a reach to suspect additional food sensitivities in the context of celiac disease or gluten sensitivity. After all, celiac disease causes increased intestinal permeability(1) otherwise known as “leaky gut.” Since large, undigested gluten proteins can sometimes pass into the bloodstream, other food proteins are also likely to reach the circulation. The immune system reacts against such foreign proteins in an attempt to protect us. The presence of non-self proteins causes an immune system reaction just as if they were infectious microbes. And herein lies one answer to some, perhaps many, cases of incomplete recovery and refractory sprue. These conditions may sometimes be relatively easy to correct through the detection and avoidance of additional food sensitivities.

Adult-diagnosed celiac patients have usually experienced many years of a leaky gut, with or without symptoms and ill health. Admittedly, these signs and symptoms can result from a variety of causes including nutritional deficiencies due to malabsorption, abnormal immune responses, damage to the protective mucosa of the intestinal wall resulting in a leaky gut, additional autoimmune conditions, and opportunistic infections. It sometimes seems that celiac disease just rolls out the red carpet for a host of additional ailments. Increased intestinal permeability, resulting in additional food allergies, is just one of the many contributors to this witches’ brew of additional ills that arise in untreated celiac disease and may continue despite careful avoidance of gluten.

Considerable evidence has long pointed toward additional food allergies. Unfortunately, this information has largely been ignored. But recent developments in serological testing are now making it feasible, economical, and convenient, to identify and correct such food allergies. One article appeared almost thirty years ago in the peer reviewed literature reporting complete resolution of what was previously diagnosed as refractory sprue following removal of additional allergenic foods from the diet(2) . Another such publication documented the progress of one celiac patient who was thought to have refractory sprue. This individual recovered with the additional dietary exclusion of egg, chicken, and tuna(3) . This patient became very ill before the possibility of immune reactions to other dietary proteins was considered.

More recent reports of the success of elemental diets in reversing refractory sprue further support this perspective(4) . Another group has indicated that 36% to 48% of celiac patients demonstrate antibody reactions to milk proteins(5) . Although there are some reports that the frequency of such sensitivities reduce with treatment time on a gluten-free diet(6,7), they also report a higher initial frequency of reactions to milk proteins.

I have not heard of any new evidence suggesting that the injury to the intestinal mucosa caused by gluten can now be distinguished from similar injuries caused by milk protein allergies. Thus, any of a variety of food allergies might be contributing to such damage to the mucosa.

The peer-reviewed reports cited above, along with the many posts to the Celiac Listserv indicating that additional food sensitivities are a factor in individual cases of celiac disease, suggest the need for vigilance among celiac patients, particularly those who are experiencing incomplete recovery on a strict gluten-free diet.

Before leaping to the use of steroids, further antibody testing seems prudent. There are a number of commercial laboratories in the United States and at least one in the United Kingdom that offer IgG testing for delayed-type allergies to common foods. Although such tests are not perfect, they can provide valuable information for those who have not experienced a full recovery on a gluten-free diet, or some individuals who have been diagnosed with refractory sprue. The therapeutic use of systemic steroids can produce some very dangerous side effects. IgG blood testing and dietary exclusion of identified allergens, on the other hand, involves a simple, convenient test followed by the kind of dietary inconvenience that most of us are already well versed in.

If possible, ELISA or similar testing ought to be done prior to beginning steroids, as such drugs may be unnecessary, or they may compromise the accuracy of the blood test.

Sources:

1. Pizzuti D, Bortolami M, Mazzon E, Buda A, Guariso G, D'Odorico A, Chiarelli S, D'Inca R, De Lazzari F, Martines D. Transcriptional downregulation of tight junction protein ZO-1 in active coeliac disease is reversed after a gluten-free diet. Dig Liver Dis. 2004 May;36(5):337-41.
2. Baker AL, et al. Refractory sprue: recovery after removal of non-gluten dietary proteins. Ann Intern Med. 1978 Oct;89(4):505-8.
3. Volta U, et al. Antibodies to dietary antigens in coeliac disease. Scand J Gastroenterol. 1986 Oct;21(8):935-40.
4. Mandal A, Mayberry J. Elemental diet in the treatment of refractory coeliac disease. Eur J Gastroenterol Hepatol. 2001 Jan;13(1):79-80.
5. Kemeny DM, Urbanek R, Amlot PL, Ciclitira PJ, Richards D, Lessof MH.Sub-class of IgG in allergic disease. I. IgG sub-class antibodies in immediate and non-immediate food allergy. Clin Allergy. 1986 Nov;16(6):571-81.
6. Paranos S, et al. Lack of cross-reactivity between casein and gliadin in sera from coeliac disease patients. Int Arch Allergy Immunol. 1998 Oct;117(2):152-4.
7. Scott H, et al. Immune response patterns in coeliac disease. Serum antibodies to dietary antigens measured by an enzyme linked immunosorbent assay (ELISA). Clin Exp Immunol. 1984 Jul;57(1):25-32.

Celiac.com 08/13/2022 - Celiac disease is an autoimmune gastrointestinal disorder that may occur in genetically susceptible individuals triggered by the ingestion of gluten-containing grains such as wheat, barley and rye. Of the many autoimmune disorders, celiac disease represents one of the few where the etiological agent is known and the disease subsides and goes in remission once the etiological agent is withdrawn from the diet.

Celiac disease is characterized by malabsorption resulting from inflammatory injury to the small intestinal mucosa, which, when prolonged, can cause malnutrition. The classic symptoms of celiac disease include diarrhea, weight loss and malnutrition. However, only a small percentage of patients with celiac disease present with the classic symptoms. Consequently, the clinical spectrum of celiac disease has grown much broader to include patients without classic symptoms. It is not uncommon for the initial symptoms to be non-gastrointestinal or for gastrointestinal symptoms, if present, to be mild or intermittent. Some of the common non-gastrointestinal manifestations include short stature, iron and folate deficiency, anemia, bone loss, aphthous stomatitis, arthralgia, dental enamel defects, etc. The inclusion of a wider range of clinical presentation has led to greater numbers of individuals diagnosed with celiac disease later in life than ever before. Adults may present with iron deficiency, macrocytic anemia and hypocalcaemia.

Studies have found the prevalence of celiac disease to be highly variable from population to population (1) and the true prevalence has been difficult to ascertain. The disparate criteria used in the diagnosis of celiac disease are often the cause. If only the clinical criteria are used in determining prevalence, the incidence of celiac disease is much lower as compared with incidence established by serological methods (2) . Using serological methods of diagnosis, the incidence of celiac disease in the general population is approximately one in 200.

Diagnosis of celiac disease based on clinical criteria can therefore be misleading and may lead to serious delays in proper diagnosis. Frequently, delays in diagnosis extend 10-13 years from the first clinical presentation of symptoms. Failure to diagnose celiac disease early on may predispose an individual to long-term complications such as splenic atrophy and intestinal lymphoma. The incidence of lymphoma arising in the context of celiac disease is difficult to ascertain. One study has shown incidence of lymphoma involving the gastrointestinal tract in patients with celiac disease to range from 3.6 percent to 40 percent (3) . In another recent study, celiac disease was found to be associated with significantly elevated risk for intestinal lymphoma, especially for non-Hodgkin’s (4) . A gluten-free diet normalizes the mucosa and helps reduce the malignant potential.

Histological examination of the small intestinal biopsy is considered to be the gold standard for diagnosing celiac disease, but it has its own limitations. Certain studies have shown some patients with latent or even active celiac disease that may have normal histopathology(5).

Serological Methods of Detecting Celiac Disease

The revised European Society of Pediatric Gastroenterology and Nutrition (ESPGAN) criteria for diagnosis of celiac disease include only a single biopsy with clear-cut remission of clinical symptoms on a gluten-free diet (6). Positive serology at the time of diagnosis with a decline in antibody levels on a gluten-free diet contributes to the diagnosis. The various serological tests employed in the work-up of patients suspected to have celiac disease include anti-gliadin antibody (AGA), anti-endomysial antibody (EMA), anti-reticulin antibody (ARA) and anti-tissue transglutaminase (tTG) antibody tests. Antibodies to gliadin and tTG are detected by the ELISA method, whereas endomysial and reticulin antibodies are detected by indirect immunofluorescence. EMA are very specific indicators of celiac disease. One study (7) concludes that “EmA-IgA is 100 percent sensitive and specific in active, untreated IgA-sufficient celiac disease patients when performed by an established laboratory.”

tTG has been identified as the endomysial antigen. This discovery has enabled development of automatable ELISA methods for detecting antibodies in the sera of patients with celiac disease. Many laboratories have opted to use the tTG antibody method in screening for celiac disease. In these laboratories, it may be the only assay used for detection of celiac disease cases. Various studies on the efficacy of the tTG antibody method for screening have found the specificity and sensitivity of this method to range from 90 percent to 95 percent (8). Assays using human tTG have been described to improve the sensitivity of detection of tTG antibodies. Surprisingly, in a recent report by the Medicines and Healthcare Products Regulatory Agency (MHRAM) on various anti-tTG IgA isotype assays the specificities were found to be good but assay sensitivity was often poor, indicating considerable variation in reliability of detection.

One limitation of existing serological methods is that, with the exception of IgG–gliadin, they detect only the IgA isotype of the antibodies; hence, IgA deficient celiac disease patients may yield false negative serology (9) . This may compromise the utility of the serum antibody methods in detecting all celiac disease cases (10).

What is IgA deficiency?

In the blood there are proteins called immunoglobulins that generally provide immunological protection. There are five types of immunoglobulins, known as IgG, IgA, IgM, IgE, and IgD. IgG and IgM provide protection in the circulatory system whereas IgA is transported to the surface of mucosal surfaces such as in the gastrointestinal tract and oral mucosa, safeguarding these mucosal surfaces from infection. Certain individuals that fail to produce the IgA immunoglobulin are referred to have selective IgA deficiency. The cause of this selective IgA deficiency is not known. What is known is that patients with selective IgA deficiency have a defect in differentiating B cells (one of the white cell types) into cells that manufacture immunoglobulins called plasma cells. The concentration of IgA in the plasma of normal individuals is about 300 mg/dl. In individuals with selective IgA deficiency the IgA levels are less than 0.05 mg/dl. IgA deficiency is one of the most common immunodeficiencies, found in one in 500-700 healthy blood donors (11). In most situations, these IgA deficient individuals are healthy. Those who develop symptoms suffer from sino-pulmonary infections, allergies, and autoimmune disorders, especially celiac disease (12). The incidence of IgA deficiency in celiac disease patients is between 2-3% representing a 10-15 fold increase over the general population. Familial inheritance of IgA deficiency occurs in 20% of cases. While the selective defect of B cells limits the number of IgA secreting plasma cells, IgA deficient individuals have normal function of IgG and other immunoglobulin secreting plasma cells. Celiac disease patients with IgA deficiency produce IgG immunoglobulin normally, and the antibodies to EMA, tTG and gliadin are of the IgG isotype rather than IgA. To prevent false negative results in IgA deficient cases of celiac disease, it is necessary to include serological methods that can detect antibodies of IgG isotype.

How can we detect Celiac Disease in patients with IgA deficiency?

In patients with known selective IgA deficiency, the IgG antibody levels for EMA, tTG and gliadin can be measured and are very effective in identifying patients with celiac disease. However, one generally does not know if the individual is IgA deficient. Until specific tests for IgA levels are performed, the IgA status of an individual may never be known. As IgA deficiency is more prevalent in the celiac population than the general population, it has been proposed that all patients who are considered for celiac disease be tested for IgA levels to identify cases of IgA deficiency. Checking all routine samples referred to a laboratory for celiac disease testing, Lock and Unsworth found that testing for IgA levels in identifying IgA deficient celiac disease patients is excessive and more likely to identify non-celiac disease cases (13). They concluded that testing of IgA levels is not cost effective. Testing for IgG antibodies to EMA, tTG or AGA, however, is cost effective. Detection of these antibodies either individually or in combination helps to identify all cases of IgA deficient celiac disease on normal diets. Using this method, we reported the first IgA deficient celiac disease case in 1989. Since then, others have reported on large populations of IgA deficient celiac disease and non-celiac disease cases and found the serological methods to be effective (see table on pg. 17). The levels of these antibodies are also of interest, as antibody level tends to correlate with the severity of the disease. When a patient is on a gluten free diet, the levels of these antibodies will decrease and eventually disappear, suggesting that the patient is in remission. Thereafter, tests for antibody levels could be checked annually or bi-annually to ensure the individual’s dietary compliance. Intake of gluten in individuals who are in remission will result in the re-appearance or increase of these antibodies in the serum (see figure below).

Celiac.com 08/05/2022 - The mere thought of traveling with gluten-free children can be so overwhelming you might think—why bother? Once you learn the tricks of traveling gluten-free you will be glad you made the effort, and you will treasure the memories forever.

Our family has learned over the years to roll with the punches— finding gluten-free meals on vacation is always possible— although it can be challenging at times. We have successfully traveled gluten-free with children aged 2 through 12. Fine dining is more practical now that the kids are older, but through the years our methods for gluten-free travel have remained mostly unchanged—although now we don’t pack much gluten-free food in our suitcases. This is due to better planning and more readily available food in natural food markets and grocery stores.

Recently, my daughter and I traveled to Victoria, British Columbia to teach a class and discovered a relatively new resource. The Victoria chapter of the Canadian Celiac Association has a list of area restaurants that understand the gluten-free diet— we used this list to narrow down our choices and had excellent gluten-free meals. Many support groups across the country have developed gluten-free restaurant lists, so it pays to contact the local support group in your travel area. The Gluten Intolerance Group, Celiac Sprue Association, Celiac Disease Foundation, and www.celiac.com all have support group lists, so it is relatively easy to make contact with these local support groups.

You will also want to go on-line and determine what gluten-free items are available from fast food restaurants. Consider regional fast food restaurants that you haven’t checked into before, as there are many across the country that you may want to visit, and it pays to know which of their items are gluten-free. We don’t eat at these places most of the time, but on vacation they can be life savers!

When planning your trip, seek out hotels with high-end restaurants. Their wait staff and chefs are more likely to understand the gluten-free diet, or they are more apt to be able to modify their fresh, made-from-scratch foods to meet your needs. Bed and Breakfasts are another good choice, and those we have stayed at have been very accommodating to our special diets. Condos with full kitchens and vacation home rentals are our top choice. Be sure you have access to an outdoor barbeque to keep your time in the kitchen to a minimum. We often rent the same home year to year—find a place that you like, as there are many benefits to knowing exactly how the kitchen is stocked. By staying in the same place repeatedly you will also learn where the best stores are located.

Call ahead to find out where the closest natural food market is (the internet is a great help in locating such stores), and ask if they stock your favorite gluten-free items. When you contact the staff ask them if they will hold your favorite items for you. On one trip we called ahead but failed to ask for the items to be held and by the time we arrived they were sold out of all of our favorite items! By calling ahead you can free up needed space in your luggage and you won’t have to worry about items that you bring getting crushed. Sometimes a natural food market can be a long distance away from your rental, so be prepared to make one big trip to that store for your gluten-free crackers, pastas, cereals, baking mixes, and snacks. We now pack only frozen homemade breads and frozen slices of healthy sweet bread, since these items travel well and can be hard to find.

Plan at least one night out for fine dining (if your children are old enough to make this enjoyable). We have had some terrific experiences on our travels at some wonderful restaurants. Call early in the day (or a few days in advance) and speak to the head chef so you can learn what menu items are safe. If the head chef is not working the night of your visit they may still be able to inform the kitchen staff of your special needs.

For air travel it is important to have a good supply of high-protein snacks in your carry-on bags such as granola bars, bananas, hard-boiled eggs, cheese, and crackers. Order a fruit plate in advance, even though you won’t be able to eat the wheat-containing packaged items that often come with it, you will at least have some fresh fruit. Our luck with ordering the gluten-free meals some airlines offer has not been very good, so we stick to the fruit plates.

Remember that problems will always arise—and even the best laid plans may go awry. One example of this is our trip to Boston last year which offered us a few surprises. We arrived on Saturday evening in downtown Boston at the Harvard Club, a reciprocal health club to ours. Unbeknownst to us, the club has a skeleton staff during the summer months, as many of its members aren’t in town much then. Their restaurants were all closed. Although I had called ahead to talk to them about food, I failed to mention our dates of travel, so on a Saturday night we began walking down a popular street lined with busy restaurants to look for some place that we could eat.

Out of about 30 restaurants there was only one high-end steak house where we thought we could eat. At 9 pm not a single table was available. I explained our situation to the bar hostess who took charge of moving things around in the bar to make a spot for us. They allowed us to dine from the restaurant menu, and we managed to have a fabulous meal, even though it was expensive, but it was our only option aside from a nearby convenience store.

The next day we had breakfast at the Harvard Club and then walked all over Boston. We had lunch at one of several places that served fresh fish which we found in a guide book. That Sunday evening we were walking in Cambridge and discovered that almost everything was closed. We ended up in an almost empty French restaurant and had another fabulous meal. The balance of the trip was easier as we stayed with relatives in a home. My aunt knew of a great natural foods market but we never made it there because the regular grocery store had an entire natural foods section with all of our favorite items.

Plan some extra time into your vacation to accommodate your special diet, but do not stay home and avoid travel because of it. Our family has so many great gluten-free vacation experiences. It would be a shame to limit ourselves because of our diets.

Karen Robertson’s Banana Bread

Reprinted with permission from Karen Robertson’s Cooking Gluten-Free! A Food Lover’s Collection of Chef and Family Recipes (Celiac Publishing, 2003). This recipe makes one loaf.

Ingredients:

• 1⁄2 cup unsalted butter, softened
• 1 cup sugar 
• 1 teaspoon vanilla extract
• 2 eggs
• 4 medium, ripe bananas, peeled and mashed
• 1 teaspoon milk
• 2 cups Multi Blend 
• Gluten-Free flour mix
• 1⁄2 teaspoon xanthan gum
• 1 teaspoon baking soda
• 1⁄4 teaspoon salt

Directions:

If you do not have time to make the bread right away, freeze your ripe bananas for later use in this recipe.

Preheat oven to 350°F.

Butter a 5 x 9-inch loaf pan.

Cream butter, sugar, and vanilla on high speed until pale in color and light in texture. Beat in eggs one at a time until well blended. With a fork, mix bananas and milk in a small bowl and set aside. In another small bowl, combine the flour, xanthan gum, baking soda, and salt. Blend dry ingredients into the creamed mixture alternately with banana mixture.

Turn batter into prepared pan and bake for 1 hour, until a toothpick inserted near the center comes out clean with a few crumbs clinging to it. Remove from pan and cool completely on a wire rack.

Note: If using a standard gluten-free flour blend, add 1⁄4 teaspoon xanthan gum to the dry ingredients.

07/29/2022 - The term “cheating” is judgmental and for most celiacs, probably inaccurate. It will not be discussed here. It is unfair to accuse a person with celiac disease of cheating— when they had to learn the diet on their own because their doctor or dietitian knew little about it.

Temptation, however, is neutral territory.

We are all tempted in some way by something. Whether or not we choose to act on temptation is something that occurs after the feeling of being tempted. Handle one and you’ve got the other taken care of. How we avoid temptation depends a lot on how we’ve addressed similar issues before; there’s no one size fits all solution. Taming temptation is a concern that must be addressed without judgment so that we may help others and receive help without guilt or shame.

It’s important to realize that when considering important issues like finding ways to stick with a medically-prescribed diet for long term health, it is possible to learn a lot from others who find themselves in similar circumstances, whether they have celiac disease or not.

The University of Chicago Celiac Disease Program developed the Taming Temptation Education Tour to highlight the fact that it is not enough to tell a newly diagnosed celiac what is or is not gluten-free. We want to emphasize the importance of teaching the skills that are necessary for an individual to choose to be gluten-free every day of his or her life. Skills for handling temptation are the focus of this education initiative.

What We Know

Roughly one-third of the U.S. population—that’s 90 million Americans—have a chronic illness. This includes 10-15% of young people who have one or more chronic conditions. It is estimated that only 50% of Americans adhere to the treatment regimen for their chronic condition. Many say that it is easier to take a medication than to engage in health behaviors (like diet or exercise) to manage their condition.

While research estimates vary, it is clear that on average, over half of those diagnosed with celiac disease do not strictly follow the gluten-free diet. Research has demonstrated that those with celiac disease who do not follow the gluten-free diet at all, or just part of the time, tend to die earlier than their siblings. Yet in this same study, those who followed a completely gluten-free diet lived longer than their siblings.

It has also been established that children diagnosed with celiac disease tend to avoid many of the serious complications of this condition, while adults who remain undiagnosed for years are much more likely to experience severe complications such as refractory sprue, autoimmune disorders, osteoporosis and infertility. While many factors may influence whether a person with celiac disease also experiences complications, it is clear that adherence to the gluten-free diet, once diagnosed, is a big part of the picture.

Education Isn’t Enough

If a person diagnosed with celiac disease is fortunate enough to receive a referral to a knowledgeable and experienced dietitian, the new celiac will start off his or her gluten-free life ahead of many others who receive little information or guidance. However, numerous studies in celiac disease and other chronic conditions demonstrate that education isn’t enough to help people follow their medically-prescribed diet.

It’s interesting to note that two countries that are commonly regarded as having high-quality care for people with celiac disease are still faced with the challenge of helping celiacs improve their compliance to the diet.

A 2002 Italian study of 390 celiacs receiving follow up biopsies after an average of seven years on a gluten-free diet found that 44% had normal biopsies and 56% had mild or severe intestinal damage. In 2001, a Canadian study of 234 celiacs demonstrated that 35% had gastrointestinal symptoms consistent with celiac disease two or more times a week and about the same number reported difficulty with the diet. Interestingly, over 50% rated their dietitians as very knowledgeable.

You Are What You Believe

So if knowledge isn’t the key, what is? As it turns out, this very question has been studied in a number of patient groups, from people on dialysis because their kidneys are failing, to people with diabetes who need to lose weight. Consistently, researchers have found a very strong influence on the ability of patients to adopt health behaviors that treat or manage their condition: Their beliefs about their own health.

Health beliefs include whether or not someone feels that their condition is severe, or that their risk for a condition is serious; whether or not an individual feels that there are alternative behaviors that can manage their condition (the belief that what the doctor has recommended is in fact what they should do); and whether or not a person feels that they can overcome barriers and successfully manage their condition on their own. These kinds of beliefs can change over time, as we learn through our interactions with others and our environment.

Researchers that have studied health beliefs have found that what an individual believes about their health affects the actions they take to maintain their health.

Super Size Me

Super Size Me is an award-winning documentary film about a man who ate at McDonald’s, three meals a day for thirty days. Before embarking on the film (he was also the filmmaker) he brought together a team of doctors to monitor his health. He decided he would vary his menu choices during the thirty days, so he didn’t have the worst items on the menu at every meal.

What do you think happened? The young man, in his 30’s, experienced a 50 point increase in his cholesterol levels, gained a lot of weight, and at one point his liver began to fail. His doctors insisted that he not complete the thirty days of the film, and when the filmmaker refused to stop, his physicians provided him with a detailed list of symptoms that would require an immediate trip to the emergency room.

Does this surprise you?

Traveling around the country to celiac conferences and support groups, I have related the story of this young filmmaker and have yet to find anyone who was truly surprised that his cholesterol skyrocketed, that he gained weight or even that he became seriously ill.

What do we believe about our health and the effects that our choices have on our health?

The fact that a vast majority of our society chooses not to eat at McDonald’s three times a day is an indication of a widespread belief that this behavior is harmful. Most of us would say that it is not necessary to read studies in a medical journal about this issue in order to know we should not eat every day at McDonald’s. Isn’t it interesting that despite the fact most of us don’t “feel” cholesterol doing damage to our arteries (only those with late stage cardiac disease might), we believe that high fat foods are tremendously harmful and make food choices accordingly?

What makes celiac disease different?

While heart disease kills more people annually than celiac disease, it is not uncommon for patients to question the results of the blood tests, or the need for the biopsy. Given a diagnosis, some question the biopsy results when they see the pathologist hasn’t written “patient has celiac disease” and are not appeased when they are told the pathologist’s job isn’t to conclude what the patient has, only to report what is seen in the tissue specimen.

Some parents with celiac disease do not have their children tested; some adults who are related to a celiac choose not to be tested. Some celiacs without symptoms are convinced that they have a “less serious” form of the disease, and some who have been on the diet for a long time and accidentally have gluten are convinced they have been cured. Other celiacs who know they should be on a 100% gluten-free diet ask: “I only have two pieces of wheat toast in the morning, is that really so bad?”

While it is clear that education plays an important part in addressing these issues, we all know that this resistance lives in the hearts of very educated people. It’s normal and it’s natural, however this resistance is founded in beliefs that reinforce harmful behaviors.

Health Beliefs of Adult Celiacs

So what exactly do celiacs believe? We conducted a pilot survey with 100 people attending a support group meeting in Western New York State, and are grateful to the members of this group for participating in our survey. Participants ranged from the recently diagnosed to 20 years post-diagnosis.

Predominant health beliefs: 51% agreed with the statement “If I eat less gluten I will have less intestinal damage.” 36% agreed that “My doctor should be the one to tell me when I need follow up testing.” 33% agreed that “I’ve lived this long eating gluten, how much will the diet help me now?” 16% expressed the belief that scientists/doctors still haven’t proven that gluten really hurts them.

This survey provided brief, yet valuable insight into the concerns of people with celiac disease, enabling us to know the kinds of issues that need to be further addressed. We will be conducting a national survey later this year and hope for additional participation.

Health Beliefs about Diabetes and Weight Loss

In a study on diabetes and weight loss, 154 of the participants were at risk for diabetes. Those who perceived themselves to be at highest risk were right—and were most often women. High risk patients did not believe that weight loss would lower their risk. High risk patients were most successful at intensive weight loss programs but were also the most likely to relapse after one year.

Despite the fact that the women knew they were at high risk, and despite their success in the weight loss program, their belief that weight loss would not lower their risk for diabetes contributed to their high relapse rate.

Kidney Failure: What Can We Learn from Patients on Dialysis?

People with kidney disease require a complex diet which eliminates potassium, phosphorus, sodium and sharply decreases intake of fluids. This diet is extremely effective in reducing medical complications (including severe pain and inability to breathe) and improves life expectancy.

Several studies in this patient population found that the extent of symptoms was not related to compliance, and a belief that complications would happen to someone else (called an “optimistic bias”) played a very strong role in patients choosing not to follow this diet. Further, researchers found that combining education with an individual’s readiness to change is important.

Blueprints for Behavior Change

Research behind smoking cessation programs is extensive and has shown that quitters with and without help are equally as successful— reinforcing the notion that there is no one solution that will work for everyone. However it is well established that deep and lasting behavior change must be internally motivated—guilt, fear, shame and pressure from others is not effective.

• Programs that help people quit smoking have found that a person’s stage of readiness is most important:
• Precontemplation: not considering change
• Contemplation: considering change
• Preparation: preparing for change (listing steps to take to implement change)
• Action: implementing change
• Maintenance: anticipating and handling temptations and learning from slips how to maintain change

An individual who eats gluten and knows that it is probably not good for them and that they should make a change is in the contemplation stage. Does this individual need more information to realize that they should move to the next level and prepare to make the change? Perhaps follow up testing would give this person the additional information that they need to take the steps necessary to improve their health. If the follow up test results show that they have been eating gluten, perhaps it might be the motivation they need to review their diet and eliminate all gluten.

Factors that Improve Success

• Factors that will improve success for a person who desires to improve their diet include:
• Knowledge of diet and success with diet
• Understanding risk of complications (Consequences of behavior)
• Ability to develop routines/develop methods to follow diet
• Trust in physician/ dietitian involved in care
• Ability to recognize and take steps to manage feelings
• Possessing positive coping skills

Checklist for Success

Every challenge we face in life prepares us for the next challenge coming our way. How you face difficult circumstances and the ways you get through them will help you decide what works best for you in this situation. Here are some helpful suggestions:

• Get the facts—regular follow-up tests and a diet check-up when necessary.
• Plan to be determined, not deprived! It’s more than the food you bring to the party— it’s preparing yourself for the circumstances that will tempt you anyway.
• Write a reminder card and carry it with you—at times when you are tempted, remind yourself why you need to stick to your diet.
• Stay current with the latest information on celiac disease—incorporate new knowledge into your diet and join a support group.
• Find medical professionals you can work with, even if you need to help educate them.
• Understand and learn to recognize the feelings that drive your urge to eat the foods you shouldn’t, and develop alternate strategies.
• Assertive communication: What will you say when someone makes you feel bad?
• Replace food as a reward— or purchase the nicest gluten-free treat you can find.
• Know that the urge will pass! Keep busy for the next 20 minutes—and it will!
• Eating is an automatic behavior—break the cycle so you can think about your choices.

A Word about Feelings

In many circumstances feelings drive behavior. If you can address how you feel at any given time, you are more likely to be able to avoid temptation. If you were ever in a situation where you decided to eat gluten, ask yourself why the temptation might have occurred. Perhaps it happened due to one of these common causes:

• Need to compensate for something you can’t have, or the need for a reward
• Feeling deprived
• Stress
• Pressure in a social situation
• Destiny – “It’s impossible to follow this diet, no one can do it.” How did you feel at the time? Angry? Depressed? Lonely? Sad? Afraid?

An Example: Destiny

REASON: The diet is so hard, it’s just about impossible. Why should I even try? FEELING: Denial (or unbearable anxiety) WHAT TO DO #1: Information!

Follow up testing will highlight consequences of not following diet, and may put unbearable anxiety (fear of unknown) into a realistic context. WHAT TO DO #2: Methods to follow diet/seeking assistance from knowledgeable dietitian and support of local celiac group.

The Key is Follow-Up Testing

While every person with celiac disease may struggle with temptation, most do so without the benefit of follow-up testing. It is not entirely possible to know how well or how poorly one is doing on the diet without regular feedback in the form of follow-up testing.

It’s never too late to start follow-up testing. The University of Chicago Celiac Disease Program recommends follow up testing at six months post-diagnosis, at one year post-diagnosis and then every year or so after that. While some physicians prefer to use the tissue transglutaminase (tTG) test for follow up, we find this test to be inaccurate in the follow up setting, often reverting to negative too soon, and not responding to the presence of gluten in the diet until a higher threshold is reached. In addition, the tTG test may be positive in people with Type 1 diabetes who are doing well on the diet (false positive).

We recommend antigliadin IgG and antigliadin IgA antibodies for follow up testing for two reasons. First, they are more sensitive to changes in the diet, often picking up small amounts of gluten. Second, the rise and fall of antigliadin antibodies tends to more closely reflect healing in the intestine.

It is important to note that receiving a “negative” test result for these tests isn’t enough information to know how well you’re doing—its important to have a numerical value for the tests, and they should be as close to zero as possible (Definitely under 10).

Your test results will tell you if your food choices have been good—ones that promote your long term health—or if they need improvement. Either way you will know where you stand, and that you have the power to do something about it.

This article originally appeared in the Summer 2004 edition of Celiac.com's Journal of Gluten-Sensitivity.

Celiac.com 10/13/2014 - Sugar—the very word brought the lively conversation at my dinner party to a screeching halt.  As my guests savored their cake, I could feel ten pairs of ears eavesdropping as I discussed this emotionally laden word with the woman seated next to me.

“My friend made a chocolate cake,” she was saying, “and wanted to cut back on sugar in her diet, so she made a few adjustments to the recipe.  Instead of semisweet chocolate, she used unsweetened chocolate.  In place of the sugar, she used a few tablespoons of Splenda.”  But, my guest continued with a look of puzzlement on her face, “the cake didn’t taste like cake at all and it was hard and chewy and kind of rough-looking.  My friend had to throw it away.”

In these days of low-sugar diets, many of us—like my guest’s friend—are tempted to skip the sugar in baking, or at least reduce it somewhat.  Much maligned and often relegated to the back of the pantry, most of us regard sugar as a source of calories and are unaware of its other roles.

Now, before I go any further let’s set the record straight.  I think we eat far too much sugar.  I look for ways to reduce it in my diet whenever I can.  I avoid sugary soft drinks, only eat desserts on special occasions, and watch for hidden sugar in commercial foods.

Nonetheless, after over 10 years of developing gluten-free recipes, I have a healthy respect for the role of sugar in baking.  It is particularly important for us gluten-free bakers, because we already have to alter the flavor of our foods by removing wheat flour.  If you thinking about omitting sugar in your baking, here’s what you should know:

1. First, the obvious.  Sugar makes things taste sweet.  You can replace sugar with a substitute sweetener but the cake may taste different because we associate “sweetness” with the distinct flavor of sugar (even though you may think of sugar as “neutral” because it’s white).
2. Sugar accentuates the flavor of food.  A chocolate cake tastes downright strange without sugar, but delicious with the right amount.  Try this experiment: Drink unsweetened tea and then add a little sugar to it and notice how much stronger the flavor is.
3. Sugar tenderizes the crumb and makes it finer and moister.  In contrast, substitutes like Splenda tend to produce a crumb that is larger, tougher, and somewhat drier.
4. Sugar encourages the browning process on the crust of baked goods.  It’s this browning that we often use as an indicator that a cake is “done,” and, it’s that tendency to brown that relates to its next benefit.
5. Sugar produces a slightly crispy, shiny exterior on baked goods that makes them more attractive.  It’s the sucrose in sugar that does this and, since sucrose is missing in Splenda, it can’t promote the same level of browning.  

Next time you’re tempted to reduce or omit the sugar in baked goods, follow these tips:

1. Instead of using all Splenda, use half sugar and half Splenda.  You will lower the calorie content, but your cake will be more tender, brown more attractively, and have a finer crumb than if you use all Splenda.  A cake may bake a little faster, so check it about five minutes before the recommended cooking time.  It may also have a little less volume and not rise as high.
2. Add a couple tablespoons of honey to the batter.  Honey is a natural humectant and encourages the cake to retain moisture so it won’t dry out as quickly.  Of course, honey has its own flavor which you may detect if you use a lot of it.
3. Increase the amount of fat in the recipe by 25%, but be sure to use healthier fats.  Canola oil and (light) olive oil are good in baking and are good for you.  Of course, this will increase the fat content and calorie content (a tablespoon of these oils is roughly 100 calories), but your baked goods will taste better and look better because fat is a flavor carrier and also tenderizes the crumb.
4. Use a topping to conceal the rough crust found in low-sugar baked goods.  For example, a streusel topping on muffins will partially conceal their rough tops.
5. Rather than drastically reducing the amount of sugar at the beginning of your sugar-reduced diet, gradually cut back on the sugar a little more each time you bake.  Your palate will adjust and eventually you won’t want “ultra-sweet” foods as much.
6. Try an alternative sweetener such as agave nectar.  Even though it has calories, it has a low glycemic level (the rate at which it raises your blood sugar levels).
7. Finally, (and this is the tough one) just try eating less of those sugary baked foods to reduce your sugar intake.  Maybe half a muffin, or a smaller slice of cake, or only one small cookie instead of a large one.  Our portion sizes have crept up over the past couple of decades to the point where our muffins are anywhere from 3-5 times larger than a standard USDA serving.

Oh, you’re probably wondering about that dessert my guests were eating.  It was a flourless chocolate cake from my book Gluten-Free 101 made with one-third sugar, one-third Splenda, and one-third agave nectar.  It was topped with whipped cream (sweetened with agave nectar) lightly dusted with Dutch cocoa, and garnished with a bright red strawberry and a few chocolate-covered espresso beans.  The slices were reasonably-sized—not the massive servings we often find in restaurants.  My guests were relieved to learn that this dessert was a sweet, yet sensible ending to the meal…and, they ate every last crumb!

Okay, so I’ve never been good at saving the punch line for the end.  It’s true, though, you DO have the key to better health: A gluten-free diet.

Still not feeling like you just won the lottery?  Well, consider this: Celiac disease is the most common genetic disease of humankind—yet for every person diagnosed with celiac disease, 140 go undiagnosed.  They may still suffer from gastrointestinal distress, headaches, depression, joint pain, or other symptoms.  Many are told they have “irritable bowel syndrome,” fibromyalgia, or chronic fatigue syndrome—and that there’s nothing that can be done for them.  “Go forth and live your life in misery,” is, in essence, their lifetime sentence.  You, however, know that simply a dietary modification (no, I didn’t say a “simple dietary modification,” and you’re probably acutely aware of the difference) is the key to better health.

The gluten-free diet is a medical necessity for our family, but it is also a healthy way of life.  Sometimes I used to think, “If only I could not have to worry about making tonight’s meal gluten-free, I’d make…” What?  What would I make?!?  Would I make macaroni and cheese from a box?  Ick!  Would I make spaghetti?  So what!  The gluten-free stuff is just as good these days.  Would I make a quick trip to Kentucky Fried Chicken or a pizza place?  Oh, now there’s a healthy meal (well okay, every now and then maybe!).

People often tell me they find the cost of the gluten-free diet to be prohibitive.  True, the cost of a loaf of gluten-free bread could buy you an entire meal in some restaurants…but think of this: What if your condition required prescription medication?  The cost of even some of the cheapest medications could buy (at least) a loaf of gluten-free bread each day.

We are fortunate to live in a time when celiac awareness is at an all-time high.  Gluten-free foods are delicious and readily available (even the “PollyDanna” in me couldn’t have said that with so much conviction 13 years ago when we first began this lifestyle!).  These days, customer service reps on the other end of the toll-free lines at food companies actually know what we’re talking about when we ask if their products are gluten-free.  Excellent cookbooks and resource books abound, as do support groups and seminars. 

Yes, if you’ve been diagnosed with celiac disease, you can consider yourself lucky for a number of reasons.  If you’ve read my books or heard me speak, you know my mantra, so sing it with me now:  “Deal with it…don’t dwell on it!”  Before long, you too will realize how very lucky you are.

After mentioning my plans for the DNA screening at a family dinner, my brother also grew interested, as he too has had unexplained symptoms and a recent negative celiac disease antibody panel and biopsy. He too felt that it would be nice to find out once and for all if this was something that he was going to have to worry about in the future. He also pointed out to me that genetic screening had the potential to save him money over the long haul, since the test is only necessary once in a lifetime. Periodic antibody screening for the disease can prove to be quite expensive, and a negative DNA test would effectively rule out the necessity of any future testing. After we finished our dinner that evening I sat down with my brother and we reviewed several offerings on the Internet by companies who provide genetic services for celiac disease, and were particularly impressed by one of them—Kimball Genetics, located in Denver, Colorado, as their DNA collection method did not require a blood draw and instead employed a simple and painless cheek cell collection using a swab.

The next day I telephoned Kimball Genetics and was connected with a very knowledgeable genetic counselor. After a discussion with her about my family's history I decided to order three celiac disease genetic tests, one each for my son, my brother, and myself. I requested three cheek cell collection kits to be sent to my home, where the samples would be collected and sent back to Kimball Genetics for testing. For individuals the cost of a kit is 10% off of $325, or $292.50 per test, and they offer a 20% family discount for testing additional family members, which brings the per test price down to $260. Kimball Genetics also offers assistance with billing your health insurance company, which can often result in the recovery of all or part of the costs incurred for the tests. This includes detailed help with the forms, insurance CPT codes for the procedure, as well as obtaining the ICD9 codes, which are the diagnostic and symptom codes that come from your doctor. At this point I realized that to get reimbursed for the tests a person should first make an appointment with their doctor, and ideally this appointment should take place before actually ordering a test kit. This will ensure that you and your doctor are on the same page regarding the importance and necessity of the genetic tests.

The cheek cell collection kits arrived in the mail within a couple of days, and I phoned my brother to arrange a "DNA collection party" at my house. On collection day we opened the kits to find enclosed two brushes for sample collection, a Test Request Form, a consent form, medical literature regarding Kimball Genetics DNA screening test for celiac disease, and detailed instructions that outlined how to properly collect and mail the samples. The kits also included a stamped return envelope that was pre-addressed to their laboratory. The Test Request Form included an area where one could enter their credit card information, and this form along with the consent form and a check or card information were required to be sent along with the sample in the return envelope.

The medical literature included with the kits comprised of a three page document titled "Celiac Disease DNA Test." The following two sections, which I found to be particularly helpful, are reproduced below from this document:

Indications for Celiac Disease DNA Testing:

• Clinical diagnosis of celiac disease.
• Negative or equivocal antibody results (anti-endomysial, tissue transglutaminase, or antigliadin) or intestinal biopsy results in an individual with symptoms of celiac disease.
• Relatives of individuals with celiac disease.
• Individuals with iron-deficient anemia.
• Individuals with dermatitis herpetiformis.
• Adults with diarrhea, abdominal pain and distention, recurrent aphthous stomatitis (canker sores), osteoporosis, infertility, multiple miscarriages, anxiety, and/or depression.
• Children with abdominal pain, diarrhea, abdominal distention, failure to thrive, short stature, delayed puberty, irritability, attention-deficit disorder and/or poor school performance.
• Children with Type I diabetes.

Our Celiac Disease DNA Test Service Provides:

• PCR analysis for DQ2 alleles (DQA1*0501, DQA1*0505, and DQB1*0201/*0202) and DQ8 allele (DQB1*0302).
• Detailed reports with genetic interpretation, recommendations, and education.
• Free genetic counseling for physicians, patients, and families.
• Free shipping.

The sample collection went very smoothly for each of us, and Spencer found it to be slightly more annoying than having to brush his teeth. We each rinsed our mouths out with water beforehand, and then rolled one brush at a time 20 times over the entire inside surface area of one check, and then did the same on the other cheek with the second brush. We let the samples dry for 30 minutes, and then put everything in their respective packages and envelopes along with the filled out paper work. Our final step was to put them out for the Mail Carrier to pick up. Their literature promised a 3-4 day turn around, and sure enough, both my brother and I got a call from someone at Kimball Genetics several days later who needed our doctors fax numbers, which we had forgotten to include on the paperwork. Once they had this information, a call to our doctors was all that was necessary to have our doctors forward the results directly to us by fax, and we also received the original reports by mail. Amazingly the Celiac Disease DNA Test at Kimball Genetics takes just one business day from the day the lab receives the sample (if it arrives by noon) to reporting of results.

I have to admit that besides hoping that my son did not inherit the genetic makeup that makes celiac disease possible—as the results were printing out from my fax machine—I still held out the very slight hope that they had not found the markers in my genetic sample, and that my whole diagnosis was some sort of big mistake. This hope was quickly crushed as the report indicated that I was in fact part of an elite genetic group—one that carries both markers for celiac disease: DQ2 and DQ8—which I later discovered meant that I inherited genetic traits for celiac disease from both of my parents, rather than just from my mother, which was my original assumption. My father is no longer alive, but after discussing his results with my mother we decided that it is possible that he also had undiagnosed celiac disease, and it is interesting to note that he had diabetes.

I couldn't help but think that my results make me something like a "Super Celiac," although the genetic counselor at Kimball Genetics reassured me that having both markers for it doesn't necessarily mean that the disease will present itself any differently. Spencer turned out to be positive for DQ2, and my brother found out that he too tested positive for both DQ2 and DQ8. On the down side their results indicate that they will need to watch out for any future signs of the disease for the rest of their lives, and probably get screened for it from time to time. On the up side there is still only a small chance that either will ever develop the disease, and at least we will know to watch for its symptoms in the future, which likely would lead to a quick diagnosis and treatment should one of them ever get it.

Ultimately anyone who decides to undergo genetic screening must be comfortable with the results—positive or negative. I advocate testing because I believe in the saying that knowledge is power, and that it is better to know than not to know—especially when it comes to your health. Unlike other testing methods, genetic screening for celiac disease has the amazing potential to reveal whether someone has been misdiagnosed with the disease, even though the odds for such a scenario are small. It also can confirm a diagnosis, or let relatives of celiacs know that they do or don't need to worry about it in the future. My mother felt vindicated by our results, as they indicated that she wasn't the only person who passed celiac genes to her children—my father did too. Who knows, your genetic results may even have the potential to elevate your celiac status, as it did in my case, to that of—Super Celiac!