Celiac.com 02/08/2019 - I've been reading a lot about the gluten challenge, which makes my stomach curl. It is rare that someone with celiac disease will have a negative antibody test result. If your tests were negative but you continue to experience symptoms, consult your physician and undergo further medical evaluation. Don't just continue to suffer—keep exploring. You are not alone in this "Gluten Maze". That title can be attributed to me over thirty years ago, and I am still using it, particularly when answering the phone lines at our local hospital's dietitian office. I feel so sorry for the young people who phone in regarding symptoms that seem so common to me, but not to people who are new to celiac disease. Also for those who have stopped searching after consulting only with their family physician, or after only one referral to a gastroenterologist.

If you are frequently on a gluten-free diet your physician may recommend a gluten challenge to allow antibodies to build up in your blood stream prior to screening. Recommendations as to how much gluten to eat during a challenge range from ½ slice of bread or a cracker daily for 12 weeks, to eating 3 grams of gluten daily for two weeks. A gluten challenge should only be done under direct supervision of a physician trained in celiac disease, and one who can immediately refer you to have a biopsy done if your symptoms are severe. You should never undertake a gluten challenge while pregnant. 

Did you know that, depending on the complaints you have listed to your family physician, your family physician may, at least here in Canada, refer you to an anatomical pathologist, general pathologist, endocrinologist, gastroenterologist, or internal medicine specialist? Medical professions have become so specialized now that you have to go into your doctor with a specific list of your symptoms, and as a new celiac your doctor has to be "on the ball" with regards to what he thinks your symptoms may represent. If they send you for blood tests they could find out that your thyroid results are out of range for your age, and could prescribe medicine to treat it and send you on your way without a further referral. If you have celiac disease your thyroid may be "out of whack" as far as the numbers show, and you may also be experiencing symptoms of celiac disease, but without a list of ALL your symptoms you cannot blame your family physician for not assessing you for it. 

To make things more complicated most people with celiac disease do not have any symptoms. Those “lucky” enough to have symptoms will hopefully get a blood screening for it, and then a referral to a gastroenterologist.

My Doctor Experience

When I first reported my symptoms of abdominal pain, diarrhea, and terrible sores with intractable itching all over my head, thighs, shins and upper arms, my family physician diagnosed me as being neurotic, and then prescribed me a drug called Loxapine. It was a drug given to the elderly in nursing homes to sedate them, and in many cases caused them to move their mouths in horrible ways that looked like they were mentally ill. Eventually their tongues stuck out of their mouth in a clockwork way that completed the picture with me. It could have gone on to the head movements and feet stamping and the inability to type properly because of shaking hands. This situation caused me to retire from my full time nursing job because I could not take blood pressures, or draw up medications in a syringe, so basically to me it ruined my life. 

My Celiac Disease and Dermatitis Herpetiformis Diagnosis

Once I was diagnosed with celiac disease and dermatitis herpetiformis, it was a great relief. There were many steps to become what I call “my new normal.” I eventually did get back to the nursing I loved, but in a totally new way. I loved writing medical articles, and I enjoyed volunteering in schools and hospitals, and regained some of my self worth lost through this experience. 

I had never been neurotic, I may have been a perfectionist, but, particularly for women in their middle years, and often what are called the menopausal years, I was wrongly diagnosed and sent on a quest for over ten years to rid myself of tardive dyskinesia caused by prescribing the wrong drug to me, a drug called Loxapine that will forever change my life. 

My Treatment and Recovery from Celiac Disease

After being put on a gluten-free diet to treat my celiac disease, I recall being thrilled to even have a diagnosis, so I diligently followed the diet, carefully reading all labels at stores, asking questions whenever I was invited out, and seldom going out to restaurants, at least until some restaurants came out with gluten-free menus. 

I came up with rules for attending restaurants or going out for meals at the home of friends, and began purchasing gluten-free items from grocery stores. It is a learning curve, and occasionally I still make mistakes, and I am still learning. Luckily there are now so many more gluten-free foods available in stores, and they no longer taste like softened cardboard, or bread-like frosted rice flour that was not fully cooked and needs toasting to even resemble bread.

Above all, I hope you learned not to write yourself off when doctors tell you that you do not have celiac disease. There are other possibilities like gluten-sensitivity or non-celiac gluten sensitivity. May you never have to go on a challenge! 

Celiac.com 02/01/2019 - When I was first diagnosed, I couldn’t believe the “rhetoric” about how sensitive a person with celiac disease is. It just didn’t resonate. I remember being told at a support group by a woman I deemed at the time to be histrionic, that a plastic strainer previously used to drain gluten-containing pasta could cross contaminate me, and that microscopic crumbs on the counter could be deadly. It just seemed to me at the time that she was “over reacting.” I thought: “Nobody could be that sensitive!” Back then I continued to bake gluten-containing goods for my husband. (That was torture by the way, to make my favorite brownies for him and not eat any of the batter.)

I made him gluten-containing bread in my bread machine. I continued to have the terrible rashes. Noticing this, my husband suggested that he only buy store-bought bread, and promised to be very careful with the crumbs. We separated the condiments, labeling the ones I used as “gluten free” with a Sharpie and storing them on separate shelves. I continued to have the terrible rashes, becoming desperate for them to go away. Somehow, in spite of his carefulness, I was getting “glutened.”

We decided together that we had to make the house gluten-free. Meanwhile, I developed recipes that replicated the foods we loved before – all gluten-free. I finally recovered my health because of living in a completely gluten-free home. I realized that the support group woman was right, and that a minute amount of gluten can cause me weeks of misery. Today, we do not allow gluten in our home at all, except in the bottled beer my husband occasionally drinks. Beer leaves no crumbs and is easy to contain, and it is a small concession for all that my husband does to accommodate me. 

Many of the people I interviewed in the survey (Relational Aspects of Food Sensitivities - Survey Half-Time Report) reported that they also have gluten-free homes, but some didn’t. Those who didn’t described being regularly cross-contaminated in their own homes. Those who lived with the ever-present threat of accidentally ingesting gluten reported relationship strife. Several participants told me that gluten was the “straw that broke the camel’s back” in breaking up their partnerships. Having to dodge gluten in the one place that all of us should feel the safest compels me to contrast other diseases such as diabetes, alcoholism, and coronary heart disease with the experiences I discovered with my research of those living with celiac disease. 

Diabetes is a life-threatening illness that requires vigilant management

A study conducted by Rintala, Paavilainen and Kurki (2013) showed that families members living with an individual with diabetes often engage in compassionate behavior, such as urging glucose checks, offering appropriate foods and keeping a close watch for signs of hypoglycemia. The authors reported that family members consider the management of diabetes as an integral responsibility to ensure adherence. Another study conducted by Manoogian, Harter and Denham (2010) found that family members take on an attitude of solidarity to support members with diabetes. When a person declares they have diabetes, their dietary needs are typically respected. Contrastingly, when a person determines they are gluten sensitive, they are often subjected to scrutiny, suspicion, and doubt. Many participants that I interviewed expressed frustration in convincing family members of their gluten-free requirements. Whereas those with diabetes can sometimes indulge in sugar consumption, adjusting their insulin accordingly, for those with celiac disease, a little gluten is not an option. Presently, those with celiac disease do not have a reliable gluten-cancelling drug.

Cohabitants living with a recovering alcoholic are urged to curtail alcohol in the home

The prevailing advice for families with a recovering alcoholic is to maintain a ‘dry’ home (a home without alcohol) in order to reduce temptation and to make it less available to encourage long-term abstinence (Groh, Jason, Davis, Olson, & Ferrari, 2007). Further, to reduce feelings of isolation on the part of the recovering alcoholic, it is recommended that family social gatherings forego serving alcoholic beverages. In addition to removing all alcohol from the home, recovery centers (Addiction Center, 2018) also recommend finding ‘sober’ activities to do together, building a peer group of ‘sober’ friends and focusing on different elements of life, to help the recovering alcoholic maintain sobriety. Of course, all families handle this differently, ranging from full cooperation and support, to continuing to drink in front of the recovering alcoholic. A person with celiac disease living in a gluten-filled home is similar to a recovering alcoholic living among regular alcohol consumers. It just causes strife.

Another disease that affects family diets includes coronary heart disease

In a longitudinal study of nearly 200 families, McKenzie (1982) found that family compliance to the heart-friendly diet ensured success for the family member with heart disease. In fact, family compliance and adherence achieved the highest levels of success (p. 104). Many of the participants in my study reported that their families, especially extended families, did not adhere to the gluten-free diet. 

Celiac Disease is a life-altering illness that requires vigilant, lifelong adherence to the gluten free diet

Living in a house where gluten is present poses serious health risks for those with celiac disease or non-celiac gluten sensitivities (NCGS). Gluten crumbs and flour dust in the air affect those who are most sensitive. The risk of cross-contamination through the slip of a knife on bread makes it risky once the jar is open. Airborne gluten inhaled from cutting a gluten-containing sandwich, according to Hendricks (2013) and flour dust from baking is enough to “trigger the inflammatory cascade” for those with celiac disease (p. 52). Those with celiac disease who live in homes where gluten is the fare risk cross-contamination.

Research by Catassi et al. (2007) indicates that 200 ppm, the amount of gluten permitted in European “gluten-free” products that are made using Codex wheat starch, “is not a safe threshold because the harmful gluten intake of 50 mg/d could be reached even with a moderate consumption (less than or equal to 250 g/d) of nominally gluten-free products” (p. 165). Further, Laurin, Wolving and Fälth-Magnusson (2002) report that gluten in small quantities can trigger relapses for those with celiac disease. Therefore, a person with celiac disease living in a home where gluten is present may present an ongoing health hazard. 

In the interviews I conducted last year for my dissertation, many participants reported that their homes were not gluten-free. Some said they have suffered regular cross-contamination as a result become sickened on a regular basis. In a quality of life study, Peniamina, Bremer, Conner and Mirosa (2014) found that those with celiac disease reported, “Other people don’t understand about my food allergy and are uncooperative or unkind toward me” (p. 935). Is it unkind for other family members to continue to consume gluten containing foods in the home of a person with celiac disease? 

What do you think? Here are some conversation-starter questions:

• Is it reasonable for those with celiac disease or NCGS to request a gluten-free home – similar to the homes described above for those with coronary heart disease, or recovering from alcoholism, or living with diabetes? 
• Someone I know recently told me that he was going to keep eating gluten in spite of the consequences because he was afraid his soon-to-be-wife would not marry him if he had such drastic dietary restrictions.  Is the diagnosis of celiac disease or food allergies potentially a relationship breaker?
• How do you manage to stay gluten-free and un-cross-contaminated in your home? How do you assert your gluten-free needs in your household?

Please share your experiences below and how you manage your gluten-free requirements in your home.

References:

• Addiction Center (2018). Retrieved from https://www.addictioncenter.com/rehab-questions/how-do-i-help-a-recovering-addict-or-alcoholic/
• Catassi, C. Am JClinNutr 2007; 85:160–6. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease.
• Fasano, A. & Catassi, C. (2012). Celiac Disease. The New England Journal of Medicine, 367(25), 2419-2426.
• Groh, D., Leonard, J., Davis, M., Olson, B., & Ferrari, J. (2007). Friends, Family, and Alcohol abuse: An examination of general and alcohol-specific social support. The American Journal on Addictions 16, 49-55. doi: 10.1080/10550490601080084
• Hendricks, J. (2013). Understanding inflammation. Alternative Medicine 12, 50-53.
• Laurin, P., Wolving, M., & Fälth-Magnusson, K. (2002). Even small amounts of gluten cause relapse in children with celiac disease. Journal of Pediatric Gastroenterology and Nutrition. 34, 26-30.
• Manoogian, M. M., Harter, L. M., & Denham, S. A. (2013). Storied Nature of Health Legacies in the Familial Experience of Type 2 Diabetes. In J. Koenig Kellas (Ed.) Family storytelling: Negotiating identities, teaching lessons, and making meaning (pp. 79-96). New York, NY: Routledge.
• McKenzie, J. (1982). Long term cholesterol response and compliance with modified fat eating styles among families at increased risk of coronary heart disease. (Doctoral Dissertation). Retrieved from ProQuest 
• Peniamina, R. L., Bremer, P., Conner, T. S., & Mirosa, M. (2014). Understanding the     needs of food-allergic adults. Qualitative Health Research, 24(7), 933-945. doi:     10.1177/1049732314539733
• Rintala, T. M., Paavilainen, E., & Astedt-Kurki, P. (2013). Everyday living with diabetes described by family members of adult people with Type 1 Diabetes. International Journal of Family Medicine. doi: 10.1155/2013/967872

Celiac.com 01/26/2019 - Introduction: Gluten is a protein found in wheat and other grains such as rye and barley and is composed of glutenin and gliadin. The gliadin portion of this complex protein is the leading cause of gluten sensitivity and immunological response of the body. Millions of Americans are affected by the presence of gluten in their diet. Foods containing gluten are numerous: bread, pasta, muffins, beer, and many more. FDA regulation stipulates that the food must contain less than 20 ppm to be labeled Gluten-free.

ZyGluten is a blend of potent digestive enzymes including Protease, Amylase, Lipase and others along with Lactococci . Two capsules (750mg) of ZyGluten was added to a bread and pasta emulsion. Time points were taken within a 60 minute time frame.

Our objective was to study a dietary supplement, Zygluten, in a stomach simulator and assess hydrolysis of gluten concentration to below 20 ppm within 60 minutes. The development work was done in vitro in a Gastric simulator at 37◦C at a pH of 2 and 4.

Method

Foods tested: Whole Wheat Bread and Pasta

Gluten concentration in food and drink can be analyzed through the preferred AOAC method: RIDASCREEN Gliadin competitive by R-BioPharm. This is an enzyme immunoassay that measures peptide fragments of prolamins and recognizes the potentially toxic QQPFP sequence found in wheat, rye and barley. Foods or beverages containing more than 20 ppm (parts per million) gluten will elicit an immunological reaction in a person sensitive to gluten. Therefore, according to FDA and EC regulations, “gluten free” foods must not contain more than 20ppm gluten. RIDASCREEN Gliadin competitive kit detects gliadin of gluten to below 5ppm.

Extraction of Gliadin from Bread

• Used four slices of whole wheat bread per 1 L MilliQ water and blended the mixture in a Vitamix until completely homogenized.
• The pH was adjusted to 4.0 with concentrated HCL
• Aliquoted 500ml of emulsion mixture into flasks.
• Added 1 capsule of Zygluten to experimental flasks. No Zygluten was added into control flasks.
• 250 µ L samples were taken at time zero (T0) from each flask and placed into 2.5mL of cocktail solution in a 15mL confocal tube.
• Placed flasks in 37◦C incubator for 60 minutes with slight shaking. 250 µ L samples were taken at 30 minutes and 60 minutes, which were then added to 2.5ml of cocktail solution.
• Samples in cocktail solution were incubated for 45 minutes in 50◦C water bath.
• Tubes were removed from water bath and cooled to room temperature.
• 7.5 ml of freshly made 80% Ethanol was added to tubes and vigorously shaken for one hour.
• Then the tubes were centrifuged for 10 minutes to remove all particulates from solution.
• Supernatant was then used in the RIDASCREEN Gliadin test
• Analysis of Gliadin (Method followed per RIDASCREEEN Gliadin protocol)
• Analysis was done following RIDASCREEN Gliadin Kit protocol
• Control samples were diluted by mixing 80µL sample with 920µL sample diluents twice to bring into linear range needed for testing.
• Experimental samples were diluted by mixing 80µL sample with 920µL sample diluent to bring into linear range needed for testing.
• Remainder of protocol was followed per RIDASCREEN Gliadin Kit (R8001) sections titled Test Implementation and Results.

Pasta was cooked as instructed on labels. Amount of pasta tested in the experiment was the portion size stated on the label. The whole wheat bread was tested at four slices of bread per one liter of water. The foods were mixed with water using a blender and its pH was adjusted to 4 before transferring it to flasks for testing. Two capsules equaling a total of 750mg of ZyGluten were added to all experimental samples. No enzyme or additional material was added to control. Both, experimental flasks and controls were incubated at 37◦C at 100 RPM shaking for 60 minutes. Time points were taken at 0 minutes, 2 minutes, 30 minutes and 60 minutes when appropriate.
Gluten was then extracted from samples and analyzed by an AOAC certified test with Immunoessay .

Results

96% of gluten in wheat bread was hydrolyzed within the first few seconds of the addition of Zygluten. The amount of wheat bread tested was double the recommended serving size. At 30 minutes the amount of gluten was below 20 ppm and at 60 minutes the concentration of gluten was 4 ppm.

The hydrolysis of gluten in pasta was more rapid. In that more than 98% of gluten was broken down with the addition of ZyGluten. At time point 0 the gluten concentration was 14 ppm and then decreased to about 2-4 ppm by 60 minutes.

Study co-authors: Nora Lopez-Chiaffarelli, Isabel Gray-Horna PhD, Ramesh Chandran PhD, Rakesh Saini PhD.

Celiac.com 01/25/2019 - Last year was a very bad year for food allergy bullying. It started off with the Party City commercial calling Celiacs gross, then the Peter Rabbit movie mocking anaphylaxis shock, and of course, the Grinch billboards.   

The national campaign for the Grinch movie included billboards, subway platforms, on buildings and buses. They all have the Grinch saying some type of negative quote or notion. However, there was one billboard in particular that crossed a line.  

The billboard had a quote from the character that received a lot of negative attention due to the undesirable concept that it enforced. It read: "I put gluten in your smoothies." This was supposedly to poke fun at those who avoid gluten because of the fad diet, rather than as an actual medical necessity. However, that is not how it was perceived by the celiac community. 

With all this negative media towards those with real health issues and food allergies, the unfortunate result was bullying that led to a death. If you have not heard the story yet, there was a thirteen-year-old boy that died because of his schoolmates. They thought taunting him with dairy, which he was allergic to, would be absolutely hilarious. This is the exact same message the billboard portrayed to the public. 

We need to stop and really think before we laugh at the media’s supposed humor. A lot of individuals have already seen this movie in the cinemas, but let’s think twice before we purchase the DVDs. Let’s show Hollywood that mocking people with food allergies, intolerances, and sensitivities is not, in any way, acceptable behavior.   

An experimental "vaccine" called Nexvax 2 is being scheduled for human clinical trials to evaluate its effectiveness in celiac disease. Immusan T is a biotechnology company focusing on developing therapeutic vaccines and received $40 million in 2017 to fund Nexvax 2 to reduce the "suffering of those with celiac disease since it is a serious inflammatory autoimmune disease caused from gluten".

Since there is no cure for celiac disease except following a strict gluten-free diet, symptoms can vary greatly based on age and diet content. Children with DQ2 and DQ8 genes may have a swollen belly, chronic diarrhea and poor appetite which can cause delayed growth. Adults often experience abdominal pain, fatigue, anemia and joint pain. 

When grain products- containing gluten and gliadin- are consumed tissue transglutaminase in the small intestinal lining signals an immune response that produces antibodies which attack the lining of the small intestine. This leads to malabsorption of nutrients from food. Nutrient deficiencies cause liver, bone and neuron damage resulting in abnormal growth, poor tissue repair and numerous symptoms.

Allergy vs Auto-Immune Disease

It is important to understand that celiac disease and dermatitis herpetiformis (itchy, blistery skin rash) are auto-immune disorders NOT an allergy to gluten. Allergies occur when the immune system overreacts to a compound causing the release of histamines. An auto-immune disorder results when the body misidentifies a substance as dangerous and causes the immune system to attack the body's own tissue.

Celiac Disease Epidemic

Celiac disease and gluten enteropathies are a growing epidemic in the U.S. and across the world due to the increasing use of processed foods and food additives that use grain products for thickening, stability and dietary supplement fillers. Environmental factors may contribute to a person becoming gluten intolerant even after decades of consuming gluten without suffering serious health consequences.

How "Vaccine" Works

The "vaccine" Nexvax 2 is designed to work similar to allergy shots according to Live Science (Nov. 9, 2018). The treatment involves twice weekly injections administered over a 16 week (4 months) period to reprogram T cells to begin to tolerate gluten and suppress immune destruction of the villi in the small intestine. No available data is currently available on the ingredients used in Nexvax 2 so safety can not be assessed at this point.

What is known is that vaccines DO NOT mean immunization whether through injection or oral dosing. Immunization is a process for developing tolerance and protection against infections. Dorland's Medical Dictionary states vaccination means to "inject a suspension of attenuated or killed microorganisms administered for prevention or treatment of infectious disease".

The Center for Disease and Prevention Control (CDC) states that vaccination does NOT guarantee immunity. Natural immunity comes only after a person recovers from the actual disease, and not all who receive a vaccination will have immunity. No vaccine is 100% effective because everyone's immune system reacts differently.

Before lining up to participate in the clinical trials, adapt a more educated approach to vaccination safety regarding a disease managed very effectively by a healthy gluten-free, lectin-free diet. It is a personal decision for adults with celiac disease whether or not they chose to vaccinate. 

It will be many years before the safety of this celiac disease "vaccine" can be established.  On a personal note: I have been a celiac for more than 70 years and would never consider a "vaccine" just so I didn't have to worry about hidden gluten.