Did you or do you know?

[Yvonne (Vonnie) Mostat, RN]

As a celiac you want to obtain as much information on the disease as possible, and statistics are a play large part of the “statistics  in celiac disease”, and if you know what chronic illness is , some commonality of research findings. The University of Chicago Celiac Disease Centre kindly forwarded an article on “Celiac Disease Symptoms and Findings. “Did you know that a recent study in North America showed that an active case-finding strategy they use to find out whether you are a legitimate celiac disease person, or have Non Celiac Gluten Sensitivity; their symptoms are not always the same. Now if you are showing almost all the symptoms of celiac disease, chances are you have it, even though you do not have celiac disease you are experiencing symptoms of positive celiac disease. According to the World Gastroenterology Organization, celiac disease may be divided into two types:-  classical and non-classical. It also lists separately silent celiac disease, which also differs from official celiac diseas. Then there is a “Wheat Allergy.. Some people who attend their family physician with vague symptoms that do not fall into the category of Classic celiac disease, where patients have signs and symptoms of malabsorption, including diarrhea, steatorrhea (pale, foul-smelling, fatty stools), and weight loss or growth failure in children. Just as celiac disease or growth failure in children. can differ from each other.

There is a number of ways celiac disease can affect patients, combined with a lack of training in medical schools , and primarily care residency programs Some people contribute to the poorly screened celiac disease problem. NCGS is a legitimate diagnosis where often patients complain of abdominal bloating and distention and flatulence. However, a physician should not blindly stamp someone as a Non-Celiac Gluten Sensitivity person, even if they complain of bloating and flatulence, but they do not have celiac disease…YET! If they continue to eat large amounts of gluten, a person with NCGS may have a life-threatening condition. They can also have villous atrophy damage to their small intestine; thus the importance of the old, tried and true biopsy of the Jejeunum part of the intestines. It caused me to cry 35 years ago when my test came back as positive after the second biopsy.  The radiologist that he felt the gastroenterologist had failed to biopsy the Jejeunum part of the bowel the first time, and thankfully it was noted in his letter that he felt the gastroenterologist had failed to biopsy the Jejeunum, so my biopsy had to be re-done, As many of you are aware of this self defeating response. First you have celiac disease. Then you were told after the biopsy that it was negative and you did not have celiac disease, then you do not have it, YET!  And, 35 years ago there was NCGS, it was listed at the University of Chicago Celiac Disease Center It was not considered celiac disease BUT there is a risk of developing celiac disease  **First degree relatives, parents, siblings, and children, should always be screened. Anyone who lists most or all of these symptoms should always be screened for celiac disease. {Some people, and some diseases, affect our brain centers feeding back to the gut. Understanding the relationship would provide better understanding of the neurological mechanisms involved, not only in celiac disease, but it also affects other autoimmune conditions like multiple sclerosis and rheumatoid arthritis, in which patients also report similarly diffuse cognitive impairment. Jean Decety, PhD, a University of Chicago neuroscientist internationally recognized for his work in using fMRI (functional magnetic resonance imaging) to understand affective behavior. While a handful of case studies have used fMRI to study extremely serious neurological symptoms in individual patients with celiac disease. The study done this past January in the American Gastroenterology survey shows that in 2004 the Food Allergen Labeling and Consumer Protection Act became law. This legislation went into effect in 2006 and makes it possible for the first time for people with celiac disease to read a food label and determine in a few easy steps if a product is safe to eat. The University of Chicago Celiac Disease Center helped to pass this law. There are more than 2,000 gluten free food items available in the United States, and consumers are more likely to find these foods in regular grocery stores.  From 2004 to 2005, sales of gluten free foods increased by 77.8 million dollars (a growth of 14.6%). The U.S. Department of Agriculture projects that the gluten-free industries revenues will reach $1.7 billion by 2025. For further information on Facts about the Gluten-Free Diet you can contact the University of Chicago Celiac Disease Center at 773-702-7593 or on the web www.Celiac Disease.net. One has to remember that this Data is from Focus Medical and reviewed by a panel of doctors. If you have medical insurance coverage you can consult a medical professional for advice. Since the exact cause of celiac disease is not fully known, but both genetic and environmental factors play a role.  Genetic testing shows that almost all people (95%) with celiac disease have HLA-DO2 or HLA-DQ8 variants of human leukocyte antigens. It is sometimes triggered after pregnancy, childbirth, surgery or viral infections. If you go “on line” you can search for “irritable bowel syndrome, Autoimmune Diseases, Crohn’s Disease, Inflammatory Bowel Disease, Dermatitis Herpetiformis, and many more. Most of the patients testing false positive had primary biliary cirrhosis. They describe the association between celiac disease and CTD, inflammatory bowel disease and primary biliary cirrhosis, with special emphasis on the diagnostic accuracy of celiac disease antibody assays. Celiac Disease is more frequent in those who have the following autoimmune disorders:-  Addison disease, Arthritis, Autoimmune hepatitis, Hashimoto’s thyroiditis, and five more as of March 23, 2021. Where can you find the Celiac Autoimmune Disorders : https://celiac.org/about-celiac-disease/related-conditions/autoimmune-disorders/ . For example Celiac Disease Lupus is an autoimmune disorder/ It affects an estimated 5 million people. Autoimmune disorders are typically associated with those who have celiac disease. Type 1 Diabetes Mellitus 2.4-16..4%. Multiple Sclerosis (MS) shows 11% Hashimoto’s thyroiditis 4 – 6 % Autoimmune. Celiac Disease affects every system in the body. (If you do not respond positively to any thyroid hormone treatment, discuss testing for celiac disease with your doctor, as you may be mal-absorbing the medication.

Did you know that people with “just wheat allergies” must avoid wheat, but most are able to eat other grains, including gluten-containing ones like barley and rye. A wheat allergy refers to an allergic reaction to wheat proteins, the symptoms of which may be life threatening. This condition is treated with a wheat-free diet, not necessarily a gluten-free diet. BUT, in the information that the University of Chicago Celiac Disease Centre warns that people who know they are sensitive to wheat should beware. The proteins found in wheat are also found in barley and rye, so do not be one of those people who say,

“Well, at least it is only wheat that I am allergic to, so roll on the barley in my soup and I will have the daily dark rye bread, the protein found in those two grains must not affect me because we used to have all the barley drink we could drink in our lemonade in England, and rye bread was a staple in our home, when I was young.” This type of thinking can put you into the legitimate celiac disease category in no time. There are more than 200 known celiac disease symptoms, which may occur. The University of Chicago Celiac Disease Center urges us to “Be aware, and take care”. Don’t cook your gluten containing noodles in with celiac gluten free noodles. (that sounds self evident) Even preparing them together will get your body into trouble. Cutting cupcakes with a knife used to cut gluten-containing cupcakes will not affect your body, but doing the reverse, cutting a plain cake, then using that knife to cut a gluten free cake is asking for trouble. A sensitive celiac cannot tolerate even a few crumbs of gluten.

You should be proud that the United States is way ahead of Canada in its labelling on products in stores, and major research centres throughout the U.S.A. working to find cures for this baffling, frustrating disease. Thanks to the public you have passed laws with regards to not only gluten in foods but also peanut allergies. We in British Columbia especially have to delve through the French on labels, not just English, and just like you we have to have 20/20 vision and a microscope to read the list of ingredients. Also, to cover themselves, many producers will say,”May contain Wheat or “made in a facility that produces wheat, rye or barley, or triticale.” It gets them “off the hook, you see” When you use a toaster toasted in the same pop-up toaster used for wheat bread with visible wheat crumbs present think of it as flashing a sign stating “Danger Danger”. There are so many four slice toasters now that are even the same price as the two slice toaster. Have your family toast in the left side of the toaster and you handle the right side. Do you butter your toast with the same knife for regular bread as you do for gluten free bread? These things will become automatic for you after a while, but as a new celiac it is better to know a few “Bewares” before you set out on this mystery path. The “Dietician’s Corner” enclosed in the University of Chicago Celiac Disease Research Centre showed gluten-free pasta was cooked in shared water and it was the riskiest scenario. Gluten levels between33.9 and 115.7 ppm were detected in gluten free pasta. However, rinsing the pasta under running tap water reduced the gluten content.  But if you are, what they call, ‘A brittle celiac” your body will pick up the smallest amount of gluten. Shared food preparation is always risky. McDonald’s is a place to be wary of. Their ice cream is not gluten free, their potato chips are not really made of pure potato and are not gluten free, neither are their milkshakes. Having sponsored a refugee family from Iraq and finding jobs for the two teenage boys at McDonald’s they both told me that they would not eat the chicken nuggets, at least only on the two days that the fat was changed. This method may be the norm. or just in that McDonald’s, but it certainly put me off buying fried McNuggets. McDonald’s hash browns are not gluten free Hamburger Helper is not gluten free, and please check the sauces used at McDonald’s. This review is very needful in our society in general not only the celiac community. This thought provoking study is long overdue, Lori Welstread, MS,RD, LDN is involved in assessing the risk of even the smallest gluten exposure as a result of shared food preparation. Larger studies could help to inform evidence-based recommendations, and minimize perceived treatment burdens placed by patients, and experienced by patients with celiac disease. Some excellent Posts that are available in the printable version:-  “Celiac Disease Centers – Resource List,  “Getting started on a Gluten-Free Diet. A step-by-step Guide, published in October 2019. Some patients with celiac disease have reported a low thyroid, and needing  thyroid hormone replacement after being on the gluten free diet for a period of time. One reason is that being on a gluten-free diet allows the small intestine to heal, and therefore thyroid medication may be better absorbed. The gluten free diet may also cause a lower inflammatory response and reduce the inflammation of the thyroid gland. One thing to note is the fact that table salt contains iodine, whereas sea salt does not.  The old fashioned way of determining if you had Dermatitis Herpetiformis was to place some drops of iodine on your thigh. When doctors did this the DH sores would flare up in the same spot.

Did you know that there is a group of people that fall into the category of “Silent Celiac Disease”, Or asymptomatic celiac disease. They do not complain of any symptoms, but still experience villous atrophy. damage to their small intestine. Studies show that even though patients thought they

had no symptoms, after going on a strict gluten-free diet, they reported better health and a reduction in acid reflux. Abdominal bloating, distension and flatulence fall into the category of “Silent celiac disease, or asymptomatic. Some people with celiac disease have no symptoms at all, but still test positive

In non-classical celiac disease, patients may have mild gastrointestinal symptoms without clear signs of malabsorption or may have seemingly unrelated symptoms. They may suffer from iron deficiency anemia, chronic fatigue, chronic migraines, peripheral neuropathy, (tingling, numbness or pain in hands or feet). Unexplained chronic hypertransaminasemia (elevated liver enzymes)., reduced bone mass, and bone fractures, and vitamin deficiency (folic acid and B12, late menarch, early menopause, and unexplained infertility, dental enamel defects, depression and anxiety, dermatitis herpetiformis (itchy skin rash) dental enamel defects, The itchy skin rash that tends to run in lines along your upper thighs, arms, and the worse place to get DH is in the scalp! If you have never had DH, I urge you to stay within your celiac diet because there is nothing worse than itching your scalp, and then when the sores are drying up, you cannot resist still scratching the area and taking the tops of the healing sores. It is “No Joke”!

So now we have more options in research than ever before, that we can observe the changes in our bodies with celiac disease and NCGS.  Parents and siblings, children of the family should all be checked for celiac disease, since there is a 1 in 10 risk of developing celiac disease.

Did you know that currently in the U.S.A. they advise first- degree relatives (Parent, child, sibling) should be screened since they have a ONE in TEN risk of having the Disease.  

The Celiac Disease Foundation offers a symptoms checklist to help you and your physician determine if you should be tested for celiac disease:  LOOK IT UP AT:  https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/  

                Some symptoms commonly found in celiac disease are diarrhea and weight loss, but research published in the medical journal BMC, Gastroenterology, confirms what gastroenterologists have been saying, anecdotally, that there is now a tally. Some people experience symptoms found in celiac disease, such as “Foggy mind”, depression, ADHD= like behaviour, The terms “non-celiac gluten sensitivity” (NCGS) and non-celiac wheat allergy, though at times you feel that they all make you ill, “At Risk’ groups such as those listed above”. The diagnosis rates increased more than 40 fold.{These symptoms (NCGS) and non-celiac wheat sensitivity, (NCWS are generally used to refer to this condition. When removing gluten from the diet it resolves the symptoms. If you have time research dairy allergy. My new daughter-in-law has a dairy allergy, and you have no idea of how cooking and entertaining my family has changed for me, the cook!

                Some facts may not be known by every one seeking a diagnosis. NB: “Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease.  Celiac disease affects 1% of healthy average Americans , that means 3 million people in our country are living with celiac disease. 97% are undiagnosed. Keep in mind that celiac disease is hard to diagnose because symptoms are so diffuse: anemia, osteoporosis, loss of dental enamel, heartburn, headaches, tingling hands and feet, joint pain, a blistery skin rash, (if you are unfortunate enough to experience Dermatitis Herpetiformis. Children may suffer vomiting, diarrhea, poor appetite, muscle wasting, and even failure to thrive: adolescents may be abnormally, small for their age with delayed puberty. The female teen may be quite concerned that she is experiencing a late menarche, but it is on the list. A natural therapy option for autoimmune diseases – Get started with a FREE consultation. For those seeking to manage symptoms

This may be an option you might want to choose to seek a naturopath, but eventually you will veer into the specialist, likely an internist who has made celiac disease one of his research options.. I know of a nurse friend who showed her family physician was told after a consultation with her family physician that she needed to see a psychologist. “NUTS” is what he called her.

Regenerative Medicine is an alternative option. Stemedix /autoimmune diseases. Stemedix  is now showing a great response, but not the cure promised by the new GLUTEGUARD which is flying off the shelves and now back-ordered.  I have written to the researchers with regards to dermatitis herpetiformis which can effect many celiac disease patients.  GLUTEGUARD is the new and highest response  I know  a lot of this medication is on back-order right now; and with wtk4rocgreat 490s s Celiac disease is a chronic immune mediated intestinal disease in generically predisposed individuals induced by exposure to dietary gluten proteins that come from wheat, rye, barley and tritical. {After attempting to describe and list the foods that contain gluten it still shocks me that the MedicaL Personelle, and customer service advisors for cosmetics still do not know what foods or cosmetics contain gluten, and still think it is just wheat! I found while in hospital, with a tray of food and a listing of ‘Celiac Disease’ on my tray, I found food items on my tray that definitely should not be eaten by me! We have had so many possible cures for celiac disease, and yes, even for dermatitis herpetiformis. First we had Larazide Accetate by Inovate Pharmceuticals, It is a potent drug that used a potent digestive enzyme which appeared to be able to break down antiendomysial and antitissue transglutaminase antibodies and help with the diagnostic process. The only problem with Larazide (INN-202 Larazide Acetate) is that it can greatly reduce the symptoms of celiac disease, but it is unlikely to treat unlimited amounts of gluten. Some dietary restrictions would still be needed. The “Very Well Health” site are still unclear as to its efficacy, its ability to transfer us to “normal eating”. Now after another five innovative possible cures for celiac disease we have Stemedix which showed great response, but sadly not enough response even after trying it myself.  Why am I so skeptical? Because I have suffered with celiac disease and DH for over 38 years and have jumped on every band wagon and suggestion with no help.  One new study found that a certain type of virus could trigger a person’s immune system to over-react to gluten www.today.com/health/celiac disease. You can read about these new study findings. Now we have GLUTEGUARD, which apparently is produced in Melbourne, Australia.  GluteGuard >custserv@glutagen.com.glutagen.com . They are overwhelmed with orders from the States, Canada and Europe, and at my last contact they were sold out and expecting further shipments. This is a million dollar business, that widely advertises and has invested thousands of dollars in research and production. Naturally they want it to work, and so do we. If it does work, over time we will know for sure.  One thing that concerns me about GluteGuard is the fact that they offer little guarantee with regards to dermatitis herpetiformis which is the bane of my life. They do advertise “Protects from the symptoms of accidental gluten ingestion” No where in their advertisement does it say that this protection protects our lower bowel or anything about the workings of our stomach lining or digestive tract. “Protecting us from accidental gluten ingestion” is such a vague blanket statement and I have sent a ‘Vonnie Questionnaire’ to custserve@glutagen.com. Have they performed antiendomysial and anti-tissue transglutaminase antibody tests taken on their experimental patients, Surely they must have a list of people lined up wanting and preparing to be a volunteer for GluteGuard. Both celiac disease and dermatitis herpetiformis  are the body’s reaction to a protein found in foods containing wheat, rye, barley and triticale. But the exact caused mechanism is still not known. Yes, I am taking it, but forgive me for still being skeptical after 38 years. And the numerous surgeries I endured (subjected to) this past year.

With regards to its effect on the “working parts” of celiac disease – Some celiacs have been diagnosed as having Crones, ulcerative colitis, and have undergone surgery that was not effective in treating their pain.

One of the problems is that several of our side effects can mimic these diseases: Acid-reflux or heartburn, anemia, autoimmune diseases including autoimmune thyroid disease, rheumatoid arthritis and type I diabetes, depression, migraine headaches, bone loss including osteopenia and osteoporosis, IBS (Irritable bowel syndrome, chronic fatigue, gas and bloating, unexplained bouts of dizziness and/or ear ringing, skin rashes (including dermatitis herpetiformis, eczema and psoriasis, unexplained infertility. Some drug companies have been telling people that some of the drugs that they manufacture contain gluten. When I investigated their claims it appears that the reason they are blatantly claiming that their drugs are contaminated is because they have used a sugar alcohol as an excipient. *Sugar alcohols are not truly sugars or alcohols, rather they are carbohydrates that provide essential calories. The sugar is found in a number of fruits and vegetables and may be extracted from many sources including any starch, and including wheat. During the manufacturing process they are completely refined leaving behind gluten proteins similar to making table sugar. The most widely used sugar alcohols used in prescriptions drug manufacturing are mannitol and xylitol. Both of these products are used either as sweeteners in liquid drug products or as bulking agents in the solid dosage forms.  Both of these products are used either as sweeteners in liquid drug products or bulking agents in solid dosage forms. The sugar alcohols are used in many diabetic products as well as in many health foods such as nutrition bars. Any person who consumes one of the sugar alcohols in significant quantities can experience gastrointestinal disturbances such as diarrhea which may mimic symptoms celiac patients may suffer after being exposed to gluten. {one can only imagine what some cough medicines would taste like if they did not have mannitol.} National organizations are working to have these notations listed on products containing sugar alcohols. Other vague products are icing sugar and corn starch. My Pharmacist said that corn starch is almost a certainty for containing flour. They can always pass this off as cross-contamination, BUT I would advise you to go onto the web site for a more definitive answer, and hope that you do not get the run-around that I had with the Cosmetic Companies.

Among the hardest symptoms to pinpoint and link to celiac are encompassed in what some patients call “brain fog”. Those with the disease often report episodes of headaches, depression, moodiness, difficulty concentrating, fumbling to choose words, and/or feeling tired. They report episodes of headaches, depression, moodiness, difficulty concentrating, fumbling to choose words, and/or feeling tired, even though they just got out of bed. Sometimes people diagnosed with celiac disease, change to a gluten free diet and then find these symptoms disappear. Do they realize how celiac inflammation affects the clarity of their neural processing? It can take months of following a strict gluten free diet for you to notice any difference at all.  When I was first diagnosed with Dermatitis Herpetiformi, {Dhuring’s Disease}, I was tested with a skin biopsy, like a small punch biopsy, about 4mm, taken from the area immediately next to a lesion. A fluorescent dye is used to look for the presence of immunoglobulin A (IgA) deposits that appear in a granular pattern. (NB:  Get a Dermatologist or

internist who have diagnosed the condition and know how to do the biopsy. Even though I had the  biopsy of the Jejeunum which proved positive for celiac disease. Following the skin sample I was placed on was on Dapsone, a drug that is used for Leprosy and Dermatitis Herpetiformis. The sores on my legs disappeared like a miracle in a week as well as the sores on my upper arms. I was scarred from all the DH sores! Or should I say the scarring was from my continuous scratching of the lesions.  It was the sores in my scalp that took almost a year to totally disappear. Even now I spot a cluster of DH lesions behind my ears and front of my scalp, {favorite places for DH to “show up”. If the product says “May contain gluten” I put it back on the shelf immediately. I repeat, cross-contamination is one of the biggest areas we have to deal with, and it is not worth the risk.

To give you a quick insight into Dermatitis Herpetiformis, DH, or Duhring’s Disease, it is a chronic skin condition caused by a reaction to gluten ingestion. It attacks both sides of the body, unlike shingles. Not all celiac people acquire Duhring;s Disease, but the vast majority of patients with DH also have an associated gluten sensitive enteropathy (celiac disease). Extremely itchy bumps or blisters appearing on both sides of the body, [where shingles just appears on one side of the body, never on both sides}. Often DH appears on the forearms, near the elbows as well as on the knees and buttocks and along the hairline. That part makes me laugh because when I accidentally eat gluten it takes about 12 hours until the hair along my scalp line begins to itch, and then, because I have been a celiac for so long, or whether I have ingested too much gluten it soon covers behind my ears and the back of my neck by the hairline. I purchase about three or four bottles of Scalpacin from the Pharmacy in the U.S.A. close to our home in Canada, or order it on line at Amazon. It is the only liquid that eases my itching, other than washing my hair in cold water every night.  I do take DAPSONE on a fairly regular basis, but after being advised by the University of British Columbia not to take too many Dapsone at a time, I scrapped the advise given to me by an internist who told me to GO:  5 – 4 – 3 – 2 – 1-  on the Dapsone, and if the DH sores had not dissipated to repeat once more.  The Internist at U.B.C. told me that Dapsone can be a blessing and a curse, and to purchase a SAT machine to check that oxygen levels in my blood were higher than 90. If not, I was to go to the hospital. Methemoglobin is a compound formed from hemoglobin by oxidation of the iron atom from the ferrous to the ferric state. A small amount of methemoglobin is present in the blood normally This has occurred to me on numerous occasions, not so much in the last five years. They have to take your blood gases through your veins, usually through the stomach. When your SATS are low because of oxygen depletion, where oxygen is not being released into the blood stream. Of course you could possibly die with this condition and lack of oxygen in the blood.  I have two units of packed red cells over two hours and after a small does of oxygen I come back home.

People accidentally exposed to gluten report symptoms of irritability to anxiety to full-blown panic attacks. People who report to Dr.Jabri, working in collaboration with Jean Decery, Phd, (A Chicago based research company. “Right now we are testing a lot more patients than we have in the past.” Mayo Clinic celiac expert Dr. Joseph Murray said in a Q & A with Allergic Living. Nearly 2% of the global population is living with celiac disease. These rates are on the rise. But Volta and his team note that the condition often goes undiagnosed, “leaving the celiac ‘iceberg’ still submerged. We have to think of the people in third world countries who are still not vaccinated to protect them from Covid. They are still concerned about enough food, Aids in many areas, preventing pregnancy, and dealing with abscessed teeth. Stomach cramps, diarrhea and vomiting are all a normal way of life in many African countries.

Total gluten elimination is hard to accomplish. While gluten-free foods and restaurants are becoming increasingly common, food is fundamental to most social relationships, and it’s hard to manage eating out when restaurants say “ heart healthy”, “may contain”  and “gluten sparing”.Just what do they mean by that, and is it worth the risk? and it’s hard to manage every interaction without seeming prickly or oversensitive. Restaurants that are very busy often have their staff use the flour- added gravy to their celiac disease specified recipes. Moreover, a study found that 20 percent of food labeled “gluten-free” actually do contain gluten. Restaurants often purchase food items in large cans, or if in powdered form often the “line Cooks” do not take the time to read the labels on these large cans of processed flavorings or - Look at the note written by our Editor with regards to a food listed as gluten free, and after further testing it turned out to contain gluten.

In the Summer Issue of the Allergic Magazine Dr. Bana Jabri, and other researchers say that a common virus that infects most people in childhood may trigger immune system responses that lead to attacks on harmless food molecules, such as gluten. Researchers at Columbia University Celiac Research Department. Now if that is true what happens to the young children who are born with celiac disease, and the first and second degree relatives that have celiac disease? I know of several families, ours included, who have siblings and parents with celiac disease? Since there are so many people who have celiac disease, how can we say that they all had this “common virus” when Dr. Jabri and other researchers are saying that a common virus attacks harmless food molecules? I understand where Dr. Jabri is coming from with the immune responses and this “reovirus”, and her suggestion that children who are at high risk of developing the condition should get vaccinated. Dr. Bana, a woman, has written numerous articles on this supposed link between the reovirus, and celiac disease, co-author Dr. Terence Dermody indicates that they have been studying this reovirus for some time and were surprised by the discovery of a potential link between this reovirus and celiac disease? “We are not in a position to precisely define the viral factors responsible for the induction of the autoimmune response.”  (Written by Mariam Matti). They continue to say that children at a high risk should be vaccinated and celiac disease currently can only be managed through eliminating gluten from your diet. I am sure that we have many “Bloggers” in our Celiac Journal who have thought of testing babies at the same time as the one year old Measles vaccine, Mumps and Rubella injections. After all, they are now recommending a third booster dose for Covid six months following the second injection, and sending letters out to those senior patients (over 60) who are at risk of being not fully covered by the second dose.

                Many non-food products use gluten as an edible “glue” to bind mixtures together, including some  vitamins, medications, lipsticks and lip balms, even bouillon cubes.

Epilepsy affects 2.7 million, Cystic fibrosis 30,000 people in the United States, 17,000 people are living with hemophilia. Parkinson’s disease affects 1,000,000 individuals.  Ulcerative colitis affects 5,000,00 individuals. Ulcerative colitis affects 5,000 people, Crohn’s disease affects 5000,000 Americans. 2.1 million Americans are living with rheumatoid arthritis. Lupus affects 1.5 million people. Multiple sclerosis affects 400,000 people in the United States. It is mind boggling to realize that celiac disease numbers are climbing and “right up there” with the big guys like Crohns and Colitis. Though the average length of time it takes for a symptomatic person to be diagnosed with celiac disease in the U.S.A. Is now four years, (used to be ten or twelve) Of that number 21% of patients with a positive anti-endomysial antibody test. {It used to take ten years for celiac disease to be diagnosed. We still have general practitioners who do not believe in celiac disease, but it has vastly improved from over thirty years ago.

Did you know that one of the first connective tissue diseases that can attach itself to your celiac disease is thyroid disease?  610,000 women in the U.S.A. experience infertility, yet doctors do not put the two together, Clomiphene for infertility and a strict celiac diet.  This could drastically change the celiac woman desiring a pregnancy.  In our local hospital women in their late twenties/early thirties; have not deduced infertility and celiac disease as being related in any way, and neither has their general practitioner. I am not suggesting that everyone that has thyroid disease has also got celiac disease, but if the progress of your thyroid disease is not being helped by the medication prescribed by your physician you can suggest a referral to a NEPHROOGIST who deals specifically with thyroid disease.

                Did you know that there is a disease, connected in some ways to celiac disease, except it is called “Non-Classical Celiac Disease: Since There are more symptoms for celiac disease than just the typical textbook” symptoms according to an Italian study published in November 2014.  The symptoms most commonly related wish celiac disease are diarrhea and weight loss, but research published in the medical Journal BMC Gastroenterology confirm what gastroenterologists have been saying anecdotally, that there are now a diverse range of signs of the autoimmune disorder.

                A “wow factor” to me was written by the author of a course I am taking. It talked about cows feeding on plain wheat, or oats which often occurs in Winter time when the cows are locked up in the barn. and most embarrassing to take him at his word and not check out myself whether wheat was being transferred to cow’s milk and thus to us., This was told to me by the teacher of the course Wheat transmitted to milk that we drink? Doubtful I thought. I have a daughter-in-law that thought she had a gluten allergy but found out it was a dairy allergy, so this information was important to her because she lived on a diary farm all her life. It seemed strange to me, even though it was purported as fact in the course books. Because the cow has four stomachs, or four distinct compartments, When the cow first eats it just chews the grains. #1. Then it travels to the Rumen for digestion. It then passes to the meticulum and finally to the omasum.  SO there is no gluten in milk, rest assured on that, especially if you are reading otherwise and taking courses on Celiac Disease. It embarrassed me to pass this news on to our readers, and I apologize.

                I repeat, cross contamination is the biggest danger today. The snack bar that carries gluten free cookies not divided from the regular cookies, cakes not sorted or wrapped in Saran. Grocery shopping is a major, time-consuming effort, but the celiac person becomes quite proficient in searching out gluten free frozen dinners or rolls, and my advice to you is to connect with another celiac, because you can share ideas about the best stores to shop at or stores that only carry gluten free foods. Often you will find them with Vegan food stores or vegetarian stores, but we have one bakery two miles from our home where we can buy gluten free yummy cupcakes in small and medium sizes, and scones with clotted cream. It is also an eat-in restaurant so you can get gluten free soups. Always better to go early because they sell out of the scones and cupcakes really fast.

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Do you know that there are eleven makeup brands that offer gluten-free options? These brands are offered to non-celiac people, gluten sensitive people, and celiacs alike. FOR  SOME people with brittle celiac disease just a few crumbs of food or breathing in a cosmetic setting powder which is popular with the “younger generation today” are breathed in through the nostrils and can make you quite ill. To the person with dermatitis herpetiformis, who has open itchy sores on their scalp this can be a horror, and I can attest to that and being contaminated, that is all it takes to start their scalp to itch or their bowels to cramp). Because I have Dermatitis Herpetiformis, a miserable side effect for some celiac people it becomes even more important to ASK. This quote from heathline.com where I found a lot of info information about cosmetics and food in general. (AN ASIDE”) Our daughter made some awesome brussel sprouts but she made a sauce to go with them and topped them with bacon.  I ate with gusto, until that night when I became ill and called her to see what the brown sauce was made of. “It was only OXO cubes Mom”. That was it, malt! Oxo cubes contain pure malt! I should have told her about ORGANIC BOUILLON  which is gluten free and yeast free reasonable for six cubes and only 10 calories each. One cube is considered enough to make a sauce or gravy and it comes in beef or chicken.

*Before you read this second part, please remember that there are two schools of thought with regards to make-up or cosmetics. Realize that there are two “schools of thought” with regards to facial cosmetics, Many articles say that as long as you do not apply a gluten containing lipstick near your mouth, or a powder close to your nose, that you are relatively safe from ingesting gluten. Some articles state that a celiac person should not bake with regular flour because it can be inhaled into your nostrils, others say that the gluten molecule cannot pass through the nostrils. I ask the question how can cigarette smoke inhaled through the nose damage your lungs? How can “vapping” damage your chest and throat? They are just smoke. I know of celiac friends who wear a mask when they roll out pastry or sift flour, and many others who refuse to bake anything containing gluten. We all know about “pores” in our skin, especially around the nose area. Is the gluten in flours able to go into the nose and be inhaled into our bodies? Of course it can, “says I”. If smoke inhaled into our mouth and nose can pass into our lungs. I mean, how big is this gluten molecule. I am not suggesting that you not “sniff” a regular pie or cake, I am just warning you that there are two schools of thought. I have an up to date list of all medications and I NOTE at the bottom of page 19:-  #1 means gluten free - #2 indicates that there are no gluten containing ingredients added to this product, however the manufacturer cannot guarantee the product is gluten free since they do not test for its absence. I do not even think that is a legitimate disclaimer – do you?

*** P[EASE TAKE NOTE: There is a bit of a controversy in the gluten-free world when it comes to beauty products. Should they be gluten free?  Some say an absolute YES – Your skin is your largest organ and it absorbs everything you put on it. Others say that it doesn’t matter as long as gluten is not

ingested directly into the body,

Should all cosmetics and food sources be gluten free? Some say an absolute yes – your skin is largest organ and absorbs everything you put on it.  Others say that it does not matter as long as gluten is not ingested internally into your body. Some celiacs have been known to react and respond differently. While HH some people have an associated gluten sensitive enteropathy [celiac disease].risking ingesting a tiny bit, either as you’re spreading the product, such as moisturizers, are likely going to come into contact with your nose, lips and even your finger nails if you are a nail biter. How many times have you noticed that weird, sometimes metallic, often fragrance-y makeup taste in your mouth. That is a sign that you got some of the makeup in your mouth. After using one of the many setting powders all over your face some is bound to get into your nose and mouth. After calling several perfume manufacturers and not receiving definite answers it made me very frustrated. We all know about not wearing perfumes in hospital or physician’s office settings, but assume it is because some people react to strong perfumes. But did you know that certain oils used in perfumes can contain gluten grains. There is also a possibility of cross contamination. I had problems with L’Oreal, or also known as Lancome. After four telephone calls one person sent me a short e-mail saying they do not have a statement regarding gluten in products. In the Lili Lolo brand which offers mineral makeup, including foundation powder, blush, lip and eye products, Be aware that everything is considered gluten free EXCEPT for the BB Cream which contains wheat germ, (which I used to buy!). The bottom line:  The BB Cream may cause symptoms if you are highly sensitive to gluten, but you should be able to use other products in the makeup line safely, they say. Foundation powders, the type used by numerous teens and in-betweens instead of a liquid make-up again concern me because the container holds a “Puff” is used to powder your nose, another one to apply a blush powder to put on your cheeks. Can you tell me that you are that selective that you do not breath that powder into your nose, or set your lipstick with the powder? That is the way my daughter sets her lipstick to “stay for the day”.

L’Oreal and Maybelline, New York as stated before does not have a statement about gluten containing ingredients, and they do not respond to multiple requests, (I should know, I e-mailed them three times and called them long distance with regards to their setting powders, which can come in several shades and their blush powder for the cheek area. I first contacted the “Medical Department:, and although a very nice person responded she did not know if the setting powders contained gluten. I could have told them that they did because I became so ill when using it; following my two daughter’s suggestions for a natural looking skin. The Medical Department there transferred me to the Customer Service Department where I was forced to listen to a recorded message about “Early Alert” neck buzzers for the aged to ring when they had a fall. {Our 101 year old mother had  been urged to get one and we would gladly pay, but a friend of hers had one, had a heart attack in the bedroom whilst the Early Alert button was in her bathroom and was in her opinion a waste of money.} I am not that age and it annoyed me to start with. I was finally referred to yet another Customer Service representative, another long distance call, who again said they had cross contamination to deal with and she did not know if there was gluten in any of their products. Can I dare say she was quite “snippy”?

The Final insult was calling the ROC Company. It has many “Multi-correction creams and oils available, all expensive. Woman especially are concerned about wrinkles particularly on their face. It is a strong product am told but the reaction that I received also made me very ill. No directions on the box or jars. My skin began to peel and my dermatitis herpetiformis was all over my arms, thighs and head. I explained this to the Customer Service Department which again was not helpful at all. I was given a long distance number to call in New York. There the person asked for the bills, the number on the bottom of the boxes and date it was purchased. Since my husband purchased one of the creams while I was in hospital he was unsure where the bill was, but we did photograph the number on the bottom of the box of both items and listed exactly where they were purchased and even offered to get the cosmetic department to confirm my statements. The Medical Department did finally call me back and asked me how I was doing with the itchy sores. I told her she had been very nice to me but the Customer Service Representative had made me feel like a thief, or a liar. We had paid almost $200 for the liquid and the cream and it was barely used.  Four weeks later I received an apology from the ROC Company about the “hassle” and they re-imbursed me the entire amount plus the long distance telephone calls, which they said all my telephone calls did not have to be done. It could have been done directly through Customer Service. Many gluten free products may be made in a shared facility. It is up to us if we want to take the risk, and just because a company does not perform animal testing is not a certainty their products are gluten free.  Gluten cross-contamination is one of the major problems for the celiac community.  Even the hospital small kiosk has gluten free scones and cookies directly next to gluten containing foods with no dividers or saran over them.

“AN ASIDE:” While in hospital I used one of their shampoo caps, called Stryker shampoo Caps. Claimed to be an easy, simple method of washing your hair without rinsing it. I was up all night scratching not only my head but my arms and legs too.  Reading the back of the plastic package I knew immediately it was a Canadian product because most of the writing was in what they call our “Second Language”. Fortunately I still know some of my University French and know that it did not mention in its ingredients Gluten or Flour. Look it up! It states that it has gluten in it to make your hair soft and fluffy!! Since I was in hospital so long I tried the Batiste Dry Aerosol Hair Cleaner, (After eight weeks I was desperate!) While stating nothing on the spray bottle in the ingredients list I went to the computer and found out that it also contains gluten – to make your hair appear fluffier and soft.” I brought the products home to be able to tell our readers to even beware of cleaner products if they happen to suffer from dermatitis herpetiformis.

MIRABELLA BEAUTY:  According to Mirabella, all its products EXCEPT for its skin tint crème are gluten-free. (There is wheat protein in the skin tint cream). Be careful all you sun tanners who want a nice tan prior to a holiday in a warm sunny country. Mirabella states that its vendors test ingredients for trace gluten and “are amazingly thorough”. Gluten-free products may be made in a shared facility, but Mirabella takes special care to clean the equipment in between batches.

NARS Cosmetics: The company does not have a statement regarding gluten. They say to watch for reaction when you start to use NARS Cosmetics products to decide if you should continue to use them or not.

NIVEA: According to NIVEA, gluten containing ingredients in the company’s products include TRITICUM VULGARE (WHEAT BRAN), SECALE CEREALE (RYE SEED EXTRACT) HORDEUM VULGARE(BARLEY) and AVENA SATIVA (OAT BRAN)   Nivea also adds that there is a risk of cross-contamination due to shared facilities.  ***I knew it, I knew it, even before I knew of its ingredients! In

My late twenties I used Nivea cream on my face and around my eyes. My face swelled up so badly I had to take time off work. My eyes were closed, my stomach was in pain, and I itched. Never touched it since, and now I know why!

NYX cosmetics:  The company does not have a statement regarding gluten The bottom line: If you are highly sensitive to gluten, watch for a reaction when you start to use NYX Cosmetics products to decide if you should continue to use them or not. NOTE: do you see how they cover themselves with these blank statements. They leave the onus on us, the celiac or gluten sensitive.

PANGEA ORGANICS:  Pangea might not truly count as a makeup company. It makes three lip balms, but mainly creates beauty products such as cleansers, toners and creams/ However, the company is extremely careful when it comes to gluten. All of its products are considered gluten free, with the exception of its OATMEAL BERGAMOT BAR SOAP, WHICH Pangea doesn’t include on its gluten-free list because of the possibility of gluten cross contamination in the oatmeal from nearby wheat fields. Pangea |Organics also states that “our Vitamin E is cou

sourced from either soy or sunflower, rather than wheat.{Do they not know that some Soy products are like poison to a celiac?  –Soy products should be avoided} During the month of May, three products were reported to Gluten Free Watchdog that were labeled gluten free and included the certified gluten-free logo from GFCO on product packaging, but named either malt extract or malt flavor in the ingredients list:;

-Nothing; But Foods Cinnamon Raisin Granola Cookie Bites

-Know Allergy Blueberry and Maple Bars

-Goody Girl Toffee Crunch Cookies

NOTE:  Your reaction to gluten stems from your digestive tract, not from your skin. In fact, the gluten protein is too large to be absorbed through your skin. What I query is the facial setting powders which can obviously be inhaled through the nose if one is over-zealous putting on the setting powder. Does that just make you sneeze or travel to your sinus? What about the use of regular flour, which I have often used when baking for my family (wearing cumbersome rubber gloves). After all, why should they suffer because I am a brittle celiac? Does that flour get into my digestive tract, should I wear a mask when baking loaves using gluten?

ECCO BELLA: From the Company: ”There are no glutens or wheat proteins in any Ecco Bella product. All our products are safe for customers with celiac sprue.”. The bottom line: “This is a safe brand for those of us with celiac sensitivity.

E.L.F.:  This brand uses all gluten-free ingredients and also does not test on animals or use ingredients derived from animals, according to the company’s statement. However, it does use shared equipment.

The bottom line: E.L.F. cosmetics are quite safe.

EM MICHELLE PHAN:  this brand is made and marketed in partnership with L’OROREAL. The company does not state whether or not gluten-based ingredients are used in its products.

The bottom line:  If you’re particularly sensitive to gluten, you’ll have to check ingredients carefully on EM MICHELLE PHAN products to make sure gluten grain ingredients aren’t present, and there’s a possibility of cross contamination. *You see, here they say “Gluten Grains Ingredients… whether they are or are not present”. Now how can one company say that

GABRIEL COSMETICS: Free from gluten according to the GFCO, which requires products be reviewed to less than 10 parts per million of gluten. Gabriel Cosmetics also is vegan (with the exception of its makeup brushes which are cruelty free.

LANCOME: This brand is owned by L’Oreal, and does not have a statement regarding gluten in its products. {They might as well say, “Buyer Beware”  Their advertising does CLAIM TO LIGHTEN DARK SPOTS, AND IMPROVE BLEMISHES OR ACNE

LILI LOLO:  Offers mineral makeup including foundation , powder, blush, lip and eye products. According to the Company, everything in the Lili Lolo line is gluten free except for the BB Cream, which contains wheat germ. {Since they do carry lip products be aware that you must never lick your lips with the BB Cream

Bottom Line: The BB Cream may cause symptoms if you’re highly sensitive to gluten, but you should  be able to use other products in the makeup line safely.

L’OREAL, MAYBELLINE NEW YORK: This Company does not have a statement about gluten-containing ingredients in its products.

Bottom Line:  If you’re particularly sensitive to gluten, you should check the ingredients carefully to make sure gluten grain ingredients aren’t present, and there’s possibility of gluten-cross-contamination. NOTE:  All these “Blank statements are intended to cover themselves legally

MIRABELLA BEAUTY:  According to Mirabella, all its products except for its skin tint crème are gluten-free. (There is wheat protein in the skin tint creme) I AM SUSPECTING that people purchase this skin tint cream to create a tan so it could be slathered over their arms and legs, and if there are cuts or DH sores you will be suffering.  Mirabella reports that its vendors test ingredients for “trace gluten” and are AMAZINGLY thorough {And they capitalize the Amazingly}according to the Company. Gluten fee products may be made in  a shared facility but Mirabella takes special care to clean the equipment in between batches. The company also doesn’t perform animal testing.

NOTE: It is difficult to monitor all cosmetic companies especially those that include certified gluten-free logo from GFCO on product packaging yet name either malt extract or malt flavor in the ingredients list.

 

QUESTIONS:  Is your toothpaste gluten free? Very Well Health notes regarding Digestive Health indicate that there are toothpastes available for Gluten Free Diets. In other words “check your toothpaste ingredients if you are a vigilant tooth scrubber/

                I could go on and on about cosmetics and anti-wrinkle creams which this generation are particularly enticed into buying.  www.verywellhealth.cpm/gluten-free-makeup-brands is a great source of information for men and women.

Retinol is a derivative of vitamin A that is entirely synthetic. This vitamin group is fat-soluble and is found mot abundantly in eggs, carrots, and sweet potatoes. When retinol is applied topically on the outermost layer of the skin. it converts into what is known as retinoic acid by particular enzymes that are in the skin. Retinoic acid can also be applied directly to the skin. It is far harsher than a standard retinol serum or cream, because it does not convert over time. Retinol has become a standard in the cosmetic community for its ability to change the behavior of aged skin cells so that they behave in a more youthful manner.  https://www.ellisjamesdesigns.com/

Retinol refines and smooths the texture of your skin. It also enhances its natural radiance and treats aging. When retinol is integrated into skincare routines that prevent aging, it can boost skin turnover and renewal. More positive effects include reducing the appearance of aging, age spots and uneven texture, as well as enhancing the collagen production.

HOWEVER:  There are side effects of retinol because retinol is such a potent ingredient. Over use or to generous an application (you know, more is better”) can result in dryness, flakiness and possibly some breakouts may occur when retinol is first introduced into a skincare routine. Your skin will need some time to adjust. We suggest slowly adding it to your nightly routine once or twice in the first week. Then gradually increase your use from there, depending on the way your skin reacts. If you notice any signs of visible peeling or irritation use it only once a week for one month, then up it to twice a week and look for any irritation. After applying retinol cream or serum to your skin, wait at least thirty minutes. This allows the skin to absorb the product well. Then you an apply another product on top of it.

You should wear sunscreen on a daily basis while using retinol as it can cause your skin to become more sensitive to light.

Prescription grade retinoids contain retinoic acid/https://www.news-medical.net/health/what-is-Retinoic-Acid.aspx) as their primary active ingredient. This means that it is more effective when treating acne and wrinkles in a shorter amount of time. However, it can come with some more adverse side effects.

HEALTH RISKS USING RETINOL:  While vitamin A, of which retinol is a derivative, is in many of the foods we ear and is an essential nutrient, it is not necessarily safe to use on the skin.

Quite shockingly retinol has been linked to an increased skin cancer risk when skin is frequently exposed to the sun. The unfortunate fact is, several cosmetic brands have added the ingredient to a whole host of  products meant for use throughout the day. Perhaps most alarmingly, in sunscreen.

Professionals recommend avoiding using daytime products like sunscreen that contain vitamin A (https://www.ewg.org/sunscreen/the problem-with-vitamin-a/).

Retinol on children, pregnant women and the elderly :More research is needed, but some studies show that retinol and retinoids pose some more signs – in other words a weaker version of a retinoid is for pregnant women and these age groups is recommended. If your body contains too much preformed vitamin A, you may experience some health issues (https://ods.od.nih.gov/factsheets/VitaminA-Consumer/) These can be damage to the liver or bones (osteoporosis)

Although retinol has not been thoroughly studied in pregnant women, it would be best to avoid using retinol and retinoids if you are pregnant.

As for the risk of too much preformed vitamin A, there is a risk of vitamin A toxicity but again, further research and studies need to be conducted.

NEXT TIME:  What foods have gluten in them that you wouldn’t expect?   I was surprised too!

 

 

[Scott Adams]

Thank you for posting this...tons of info here!

[Wheatwacked]

On 1/7/2022 at 8:02 PM, Yvonne (Vonnie) Mostat, RN said:

even though patients thought they

had no symptoms, after going on a strict gluten-free diet, they reported better health and a reduction in acid reflux.

Any one watching TV knows these are a normal part of life in America. Look how they dance with their new glucose monitors.