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  • Yvonne (Vonnie) Mostat, RN
    Yvonne (Vonnie) Mostat, RN

    Did You Know? (Winter 2017)

      Journal of Gluten Sensitivity Winter 2017 Issue

    Caption: Image: CC--Eric Hunsaker

    Celiac.com 01/11/2017 - Did you know that Advertising has "Cottoned onto us?" In December all the magazines are about baking, foods, cakes and bakes, candies and calories. If you are not aware of what "Cottoned up" actually means, it means that even if we have celiac disease, gluten sensitivity or dermatitis herpetiformis, they know that in December, prior to Christmas, we are geared up to baking tasty, sweet, gluten-free treats. And in January we are into healthy eating, like natural soups, low calorie warm and nutritious eating, cost saving ideas, because we have just gone through Thanksgiving gluttony and Christmas eating.

    At one time we celiac people did not have the options that we have today. It was white rice bread from the freezer of the store, full of frosty tops, and vague cookies that cost $3.00 each. Now we have so many options we can get fat too, starting with Thanksgiving right up to New Year, when the new magazines come out with calorie cutting ideas, weight loss regimes, and a stringent diet!

    Did you know that celiac disease affects people differently? According to the The University of Chicago Celiac Disease Center: "There are more than 200 signs and symptoms of celiac disease, yet a significant percentage of people with celiac disease have no symptoms at all. However, people without symptoms are still at risk for some of the complications of celiac disease". For example, my 19 year old grandson's girlfriend has celiac disease, and she likely had it all her life. She was tested for celiac disease because she had "tummy aches before I write exams". That was it! Fortunately she had a bright mother who took her to the doctor and asked for the simple blood test for celiac disease. Sure enough, after doing the blood test and undergoing the biopsy of the jejunum, she had celiac disease.

    She was not skinny because she was 18 and growing, she was skinny because of malabsorption and eating her daily breakfast of cinnamon toast, and her usual lunch of peanut butter and jelly sandwiches. I am a little wary of the biopsy of the jejunum because as a nurse I found several discrepancies in the testing process. I have seen where a gastroenterologist who did failed to biopsy the correct area and told patients that they were negative for celiac disease. The patients became quite ill and the test was repeated by another gastroenterologist, and the test proved positive for celiac disease. In other words, the two patients did indeed have celiac disease.

    Did you know that the Head of dermatology at the University of British Columbia recommends Dapsone as the drug of choice for clearing up dermatitis herpetiformis? It is called the “Golden Standard” of treatment, which he teachers to all his students of dermatology. I had three biopsies of the lesions on three different places in my body. It was not until the fourth biopsy that they acquired a Positive for dermatitis herpetiformis. It is very difficult to obtain punch biopsies of the DH. But if they put you on Dapsone for four days the lesions begin to clear up almost immediately. It took longer for the lesions in my scalp to go away, around six month, and four days for those on the other parts of my body to disappear. And they were so itchy (as any of you with DH know) that I actually contemplated cutting all my hair off. I tried Quellada liquid thinking it might be fleas, bed bugs, or some other strange skin disorder. "A little learning is a dangerous thing", that is what they say to all nurses.

    Those of you who are newly diagnosed with DH and placed on Dapsone, please remind your doctor if he has not already told you that Dapsone can cause anemia. I was advised to take 2,000 Units of Vitamin C daily because it helps significantly with the anemia.

    According to an article by Lisa Fittterman in the Winter 2016 issue of Allergic Living magazine, a 28 year old California Mom was stymied by her child's reactions and celiac outbreaks because they are so vigilant about reading labels when shopping. The culprit was a new generic controller inhaler for her asthma. The Mom looked up the medication on the Internet and saw the word, "Starch". She says the drug turned out to contain gluten as an additive. She hit roadblocks at every turn.

    With celiac disease now affecting 1% of the people in North America, "drugs can present a distressing unknown". What is an excipient they ask? Inactive ingredients used as binding agents tent to give bulk and allow them to absorb water and disintegrate. They are derived from foods such as corn, potato or wheat starch. Independent investigations have shown that wheat starch is used less frequently than the other two because it doesn't bind well." When you ingest a new drug without knowing what it contains it is like walking down a road blindfolded says Sue Newell, the Canadian Celiac Association's manager of operations. "We teach people how to read labels and cut through jargon to identify every ingredient - but with prescription drugs they can't do that...they may need to take drugs, but they don't feel safe."

    The US. Based National Foundation for Celiac Awareness (NCA) released in the Fall of 2014, almost 25 percent of the 5,625 people with celiac disease and gluten sensitivity reported having experienced gluten-related symptoms to medication. Patients and health–care providers said this has led to anxiety and non-compliance in taking drugs. Both Canada and the U.S.A. Food and Drug Administration have national standards of less than 20 parts per million (ppm) of gluten for a packaged food to claim to be gluten-free, but the requirements for food labeling do not apply to prescription or over-the-counter drugs. In May 2015, the FDA denied the request of a citizen's petition to either ban gluten as an inactive drug ingredient or require that its presence be labeled. The FDA said that "No oral-drug product is expected to contain more gluten than the amounts potentially present in foods that can be labeled 'gluten-free' under the FDA's food-labeling regulations."

    It is far from an official requirement in Canada. The Canadian Food and Drugs Act sets the regulations for labeling gluten and allergens, but the focus has been far more on food. A Health Canada spokesperson says that the 2014 plain-language labeling initiative additionally makes it necessary for pill package inserts to list ingredients. But Newell of the CCA says these listings are not as transparent as they sound. Though the protein is not often present in our medications, the bad news is that finding out for certain may take the skill of a detective or a sleuthing pharmacist.

    It is time for the celiac and gluten sensitive community, to unite and fight, write letters, speak to their pharmacists and repeat the fact that the person ordering the drug is "A brittle celiac," and all drugs need to be researched by the pharmacist prior to filling prescriptions.

    Steve Plogsted, a pharmacist with a special interest in tracking gluten, suggests: "Watch for the word 'STARCH' as an excipient on a medicine, as it's the only likely culprit to contain gluten. If the word is there, try to drill down through the manufacturer as to what kind of starch. If it is wheat, you will need to avoid it."

    One man took a stand for gluten-free drugs. Michael Weber was diagnosed with celiac disease on 2004, and immediately adopted the gluten-free diet to protect his health. BUT, after taking a generic for only a few days, the resident of Eastchester, New York, was distressed to find he was again developing symptoms, such as the dermatitis herpetiformis skin rash he had incurred before the condition was discovered. It turned out the pills contained gluten as an inactive ingredient. Shocked to find this undeclared exposure after he had been so careful, Weber contacted the FDA, but he was informed that the manufacturer wasn't braking any rules by not stating gluten's presence overtly. In 2008, Weber filed a citizen's petition requesting that the FDA either ban gluten outright in medications, or require manufacturers to label for the protein. Then, for seven long years, he got politicians to write letters of support, and made follow-up inquiries, but he received no replies.

    Finally, in 2016 the U.S. consumer protection group Pullback Citizen filed a lawsuit to elicit a response from the FDA. Last May the agency issued a 21 page decision that denied the request for a ban and stated that manufacturers already needed to identify gluten as an intentionally added inactive ingredient to any drug that is taken orally. The FDA said it did, however, plan to issue "draft guidance" for industry regarding gluten in drug products, but no time-line was given. FDA spokesman Stephen King explained the decision in an interview saying that if people with celiac disease are doing well on a gluten-free diet, they "should" not be harmed by the very low amounts of gluten potentially present in oral drug products. Conversely, if they aren't doing well, "we would expect {them} to consult with [their] physician about ways to further reduce overall exposure to gluten. Such efforts might first focus on the diet as the most significant potential course for oral gluten exposure."

    But Katie Einspanier, Weber's lawyer through Public Citizen, criticized the ruling as nothing more than a super-technical reading of the petition since the FDA's response focused on the possibility of gluten itself being an inactive ingredient. "The most likely scenario for gluten in drugs is that gluten is simply a natural component of another inactive ingredient and not separately added as an inactive ingredient." Weber is considering whether to draft a new petition with more precise language. We will keep you informed regarding this one man's fight for gluten-free drugs. He needs to be cheered, and we all need to sit down at our computer and help by writing to pharmacists, the FDA, and the College of Pharmacy.


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    Be aware. Dapson is highly toxic and dangerous. Exercise caution. Read the notice that comes with it. It nearly killed me. Also be alert to the fact that cinnamon and peanut butter contain allergens that interact with celiac disease if there is itching and a rash that continues after avoiding gluten. Refrain from all forms of cinnamon (check labels for hidden cinnamon) and peanut butter for approximately 6 weeks and see what happens.

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  • About Me

    I am a freelance journalist. I am a retired registered nurse. I write regularly for the Celiac Journal of Gluten Sensitivity which publishes in the United States and British Columbia. I write under Dr. Ron Hoggan out of Victoria. I write for several secular magazines, and also five or six religious magazines, both Protestant and Catholic. Since retiring as a nurse, journalism, my second major in University, has been a life saver for me, both my poetry and articles. My husband and I recently arrived home from an all inclusive holiday to the Mayan Riviera, The Grand Sirenis Mayan. The Assistant Manager was unaware of celiac disease, but he was very interested in learning about it. I had my "Safe" and "Sorry" list translated into Spanish before we left home and several sheets of information laminated. I was so impressed at how they handled my meals I wanted to write about it. My Gluten Free Canada FREE Magazine.

  • Related Articles

    Yvonne (Vonnie) Mostat, RN
    Did You Know? (Spring 2017)
    Celiac.com 05/19/2017 - Did you know that now, according to Beyond Celiac 83% of those with celiac disease are misdiagnosed or undiagnosed? Did you know that the average time a person waits to be correctly diagnosed, according to Daniel Lefler, M.D., M.S, of the Celiac Center at Beth Israel Deaconness Medical Center is still six to 10 years? This has changed little in the past 10 years, even though celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases. Over a four year period, people with undiagnosed celiac disease cost an average of $3,964 more than the healthy individuals (Source: Long et al, 2010.
    Did you know that 5 - 22% of people with celiac disease have an immediate family member (first degree relative who also has celiac disease, and that there isn't yet a pharmaceutical treatment or cure for it? In 2009 WebMD reported that, in the USA, celiac disease has quadrupled over the last 50 years, yet many people who have the disease remain undiagnosed. Still Dr. Stefano Guandalini, N.D. Director of the Celiac Disease Center at the University of Chicago told WebMD, "Many of these people have no symptoms, but many do have symptoms that are not recognized for what they are. We believe that only five percent of people with celiac disease know they have it".
    Is there any wonder that a woman at the dietician's office at our local hospital where I sometimes volunteer did not know she had celiac disease? This is because she was only experiencing symptoms of joint and muscle pains, abdominal pain and laboratory tests only showed anemia. She was first referred to an orthopedic specialist, then an internist, and neither checked for celiac disease or questioned her further. "Hello!!" Are there still general practitioners out there who are not aware that there is a blood test for celiac disease?
    Some people experience symptoms found in celiac disease such as a "brain fog," depression, ADHD like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease. The terms non-celiac gluten sensitivity (NCGS) and non-celiac wheat sensitivity (NCWS) are generally used to refer to this condition. When removing gluten from their diet it removes symptoms. At my first biopsy of the bowel the gastroenterologist failed to biopsy the jejunum. My blood test was positive, the biopsy of the dermatitis herpetiformis proved positive too, and it wasn't until I insisted on a second biopsy of my jejunum that I was diagnosed. If I had not been persistent, I would have given up after the first biopsy and continued itching and ingesting gluten. Persistence, or stubborn determination (i.e. knowing my own body) paid off, but it took a year for the dermatitis herpetiformis to totally rescind, most particularly the sores on my scalp.
    You know your own body better than anyone; you know when something is wrong. If your grocery store fails to give you good service you go elsewhere. The Celiac Disease Foundation, both in Canada and the United States, can help you find the right doctor to discuss your symptoms so you can get diagnosed and treated. Shop and find your own healthcare practitioner. Do not allow a doctor tell you that you are neurotic, perimenopausal, or their favorite: "stressed." Since there are more than 200 known celiac disease symptoms which may occur in the digestive system or other parts of the body, and some people develop celiac disease as a child, others as an adult, you owe it to yourself to keep checking and researching and reading magazines like Celiac.com's Journal of Gluten Sensitivity, because, according to the Mayo Clinic, there is no cure for celiac disease.
    The American Journal of Gastroenterology, at ScienceDirect.com, offers a nationwide view of celiac disease, and conducted two randomized trials that tested strategies of early or delayed gluten introduction in infants, and neither strategy appeared to influence the risk for celiac disease. They also indicated that breastfeeding did not protect against celiac disease. "While disappointing, these results should spur the study of wider environmental risk factors beyond infant feeding, such as intrauterine and perinatal exposure as well as environmental influences later in life, including drug exposure, microbial infections, and the mictobionme. Given that celiac disease can develop at any age, it is imperative to study these proposed triggers so as to elucidate the loss of tolerance to gluten and to develop future intervention strategies."
    At the start of the Gastroenterology study, between 2000 and 2001 - 11.1 out of every 100,000 people had celiac disease. Toward the end of the study - between 2008 and 2010 it was up to 17.3 out of every 100,000 people. However, researchers noted that the incidence of celiac disease plateaued after 2004. It is no big surprise that they believe, according to Dr. Stefano Guandalini, M.D. "that only about 5 percent of people with celiac disease know they have it." Web MD reported that "Celiac Disease had quadrupled." Many physicians I approached whilst completing this survey indicated it was physician knowledge of the signs and symptoms of celiac disease that has caused a greater increase in celiac testing and the use of a simple blood test (tTG-IgA). The Tissue Transglutaminase Antibodies test will be positive in about 98% of patients with celiac disease who are on a gluten-containing diet. The same test will come back negative in about 98% of healthy people without celiac disease. Although rare, patients with celiac disease could have a negative antibody test result. There is also a slight risk of a false positive test result, especially for people with associated autoimmune disorders like Type 1 Diabetes, autoimmune liver disease, Hashimoto's thyroiditis, psoriatic or rheumatoid arthritis, and heart failure. This test is not good for someone who has been following a gluten-fre diet on their own.
    A biopsy of the small intestine is still considered the only way to diagnose celiac disease by many doctors. Many parents are reluctant to submit their young child to a biopsy of the Jejeunum and have used only blood tests, including the IgA Endomysial antibody (EMA). This test has a specificity of almost 100% but it is not as sensitive as the tTG-IGA test, because about 10% of people with celiac disease do not have a positive EMA test. Also, it is VERY expensive in comparison to the tTG-IgA and it requires the use of primate esophagus or human umbilical cord, so it is usually reserved for difficult to diagnose patients. The Total Serum IgA is used to test for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTC-IgA or EMA result. If you are IgA deficient, our doctor can order a DGP or tTg-IgC.
    The decimated gliadin peptide (DGP-IgA and IgG) is a test that can be used to further screen for celiac disease in individuals with IgA deficiency or people who test negative for tTg or EMA antibodies. Even though it is very rare, it is possible for someone with celiac disease to have negative antibody test results. So please do not become discouraged even with negative results, if you are still experiencing symptoms talk with your physician and undergo further medical evaluation. Keep in mind that some of these tests are not medically covered by insurance.
    Did you know that you can get genetic testing for celiac disease? People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 25 - 30% of all people. Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease, nor does it mean you will ever develop celiac disease. However, if you carry HLA DQ2 and/or DQ8 your risk of developing celiac disease is 3% instead of the general population risk of 1%.
    Since celiac disease is genetic this means it runs in families. First degree family members (parents, siblings, children) who have the same genotype as the family member with celiac disease, have up to a 40% risk of developing celiac disease. The overall risk of developing celiac diseases when the genotype is unknown is 7% to 20%, which is a big difference!
    We cannot blame ALL physicians for the lack of a correct diagnosis. It is one of the most puzzling, multi-faceted diseases, and a patient going into their family physician's office may have very vague symptoms. Thousands of dollars may be spent on blood tests, referrals to specialists, x-rays, and scans before a diagnosis is found. There is nothing more deflating or frustrating to someone who has a myriad of legitimate symptoms than to be told that they are either depressed, stressed or suffering from an overactive imagination.
    Sources:
    The American Journal of Gastroenterology https://celiac.org http://www.beyondceliac.org 

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