Did You Know? (Summer 2013)

Celiac.com 03/04/2017 - A friend, knowing I was a "brittle" celiac with dermatitis herpetiformis, asked me last week if the first sign that I had celiac disease was a bloated stomach, as she pointed to her post-Christmas stomach. (You never want to ask a woman when her baby is due.) I told her that celiac disease is not like a cold. You do not take two tablets and hope to be cured by morning. Since this disease of connective tissue can take specialists an average of eleven years to diagnose, go see your doctor. A bloated stomach can also be a sign of gall bladder disease, colitis, Crohn's disease, diverticulitis, or many other conditions including the big "C".

Did you know that some experts still say that the blood screening tests (EMA) or (tTG) may "suggest" that a person has celiac disease, but these blood tests do not replace the need for a series of intestinal biopsies? Even then, a person recently afflicted by this type of gluten allergy may not have suffered long enough for the villi in the lower bowel to be flattened. Those of you who are "in the know" are aware that these amazing little wavy hair-like structures absorb vitamins and minerals into the body.

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Did you know that new data suggest that less than 50% of newly diagnosed patients with celiac disease present with the classic gastrointestinal symptoms of bloating, abdominal pain, diarrhea, and/or constipation. In a recent Canadian celiac healthy survey of 2681 adults with biopsy proven celiac disease, many other symptoms were revealed including extreme weakness or fatigue (68%), anemia (66%), mood swings or depression 44%), bone or joint pain (38%), easy bruising (35%), nausea or vomiting (29%), aphthous ulcers (26% - small ulcers, especially the whitish or reddish spots in the mouth characteristic of aphthous stomatitis.

Aphthous ulcers are what I call canker sores, or alternately Sutton's disease, and are classified according to the diameter of the lesion. Many aphthous ulcers have the same appearance as minor ulcerations but are greater than 10 mm in diameter and are very painful. In desperation, my Mother was using a small amount of powdered Alum applied with a Q-tip. It leaves a horrible taste but it works - again see your doctor. Recurrent aphthous stomatitis is one of the most common oral conditions affecting at least 10% of the population, (see aphthous ulcer-Wikepedia). They usually take more than a month to heal and frequently leave a scar. The term aphthous stomatitis is a condition characterized by recurrent discrete areas of ulceration that are almost always painful. They can occur on the tongue, lips, cheeks and in rare cases on the uvula.

Other common symptoms are also listed on the Canadian Celiac Association website at: (http://www.celiac.ca/pdfs/Hidden&Dangerous.pdf ) including dental enamel defects, arthritis, delayed puberty, abnormal liver enzymes (alanine aminotransferase and aspartate aminiotransferase), infertility in both men and women, neurological conditions such as unexplained ataxia (unexplained failure of muscular co-ordination) or peripheral neuropathy, and epilepsy with occipital calcifications.

The new screening tests have exposed the many other presentations of celiac disease. But, no wonder we get confused! A first-person story of a man who went for the bowel biopsy and the report noted on the bottom of the page that the specialist had failed to biopsy the jejunum.

Did you know that untreated celiac disease can result in nutritional deficiencies (especially iron deficiency anemia) an increased risk of osteoporosis, lymphoma, and reproductive complications such as miscarriages and infertility and possible development of other autoimmune disorders?

Did you know that immediately on follow-up, after diagnosis, testing should be conducted for nutrient deficiencies, to determine bone mineral density, and for other autoimmune diseases. I garnered a lot of the above information from the site "celiac disease - hidden and dangerous", Shelley Case, BSc RD and Paul C. Adams, MD, Editor-in-Chief of the Canadian Journal of Gastroenterology.

Did you know that a number of studies in Europe and the U.S.A., over the past ten years, investigating both children and adults with celiac disease, have revealed that consumption of moderate amounts of pure, uncontaminated oats is safe for the majority of people with celiac disease? (editor's note: Please see Dr. Fine's dissenting comments in the Spring 2013 issue of The Journal of Gluten Sensitivity.)

Either I am one of the minority that can't consume oats, or oats are contaminated in the United States and Canada and I have the dermatitis herpetiformis spots to prove it. I recently went into a Health Food Store and bought some granola bars that said on the label: "Wheat Free, Gluten Free and Dairy Free", and had a special red label on them stating "Gluten Free". I did not follow my own "caveat emptor" rule and simply ‘assumed' that the label was correct. Within 24 hours my scalp was tingling. By the next day, sores could be seen lining up at the back of my head, a few on my forehead, and even the inside of my ears took a hit this time. We counted back two days and went on a search. My husband found the granola bars. They contained oats! I can no longer increase my Dapsone dosage because it causes me to develop anemia and methemaglobinemia. (I had three hospital admissions last year for methemaglobinemia, so I saw my physician for more Prednisone.) I was a mess - soaking my head with cold water. I even considered shaving my hair off. (I'm only joking, but it was bad!)

When I was diagnosed with dermatitis herpetiformis fifteen years ago I was told I should not take the "oat challenge" until I had been totally free of dermatitis herpetiformis outbreaks for at least a year. That has yet to happen and I consider myself careful about avoiding gluten.

Did you know that it only takes 0.1 grams of gluten {that is 1/149th} of a slice of bread to damage your intestine?

Did you know that gluten is often a hidden ingredient in many goods because American and Canadian labeling regulations do not require manufacturers to declare all components of ingredients (e.g. seasonings, modified food starch and hydrolyzed vegetable proteins).

RECOMMENDATIONS: Check the ingredient labels of processed foods each and every time you purchase one. Changes frequently happen. Learn and memorize ingredients that are not gluten-free, or are questionable. I laminated several lists to take shopping with us.

Cross-contamination in the manufacturing process is also a significant concern.
Look for products that have been certified gluten-free by one of several gluten-free accreditation groups. If you see a logo on a package for the "Gluten Free Certification Organization" or the "Celiac Sprue Association Recognition Seal" you can feel confident that the products is gluten-free. Both of these programs provide a list of accredited companies on their websites. Read more about national ingredient labeling policies at Celiac.com. You can often learn which manufacturers always declare gluten, if it is present, on their ingredient labels. Just look on the manufacturer's "statements" page. I have found that it is valuable to learn these company names for ease of mind when reading their ingredient labels. If in doubt, contact the manufacturer. Many have their gluten-free information online, or place a phone call to their customer service representative. This contact information is usually on the packaging of each product and is often a 1-800 toll free number.

Did you know that there is a vitamin supplement in a lot of health food stores, R.B,C.; made by Enzymatic? Amazingly it does not list Vitamin C in the way it normally appears on labels. It lists 60.0 mg of ascorbic acid. Since taking this vitamin daily, along with 2,000 units of Vitamin C, I have happily hit the best number on the normal hemoglobin scale.

Did you know that damage to the villi in your lower intestine may not completely heal after living on a celiac diet for a whole year? The resulting loss of vitamins, minerals, and calories can cause malnutrition despite following an adequate diet. Celiac disease impairs digestion, absorption, and can lead to other food allergies.

Did you know that celiac disease is the most common autoimmune disorder in North America? It can occur at any age including among the elderly, as well as in obese patients and those with constipation. The wide variety and severity of symptoms frequently results in misdiagnosis. A study out of Columbia University reported average delays of 11 years after the development of symptoms. Before diagnosis, 31% of the American survey respondents had consulted two or more physicians about their symptoms. (http://209-166-208-58.cust.walrus.com/D_Research/Characteristics_of_adult__1.pdf) It requires a team approach: you, your medical history, a physician, a dietician and a celiac support group. An individualized treatment plan should be developed, together with regular follow-ups to monitor compliance, nutritional status, and provide additional information and ongoing support. Good dietary compliance will reduce the risk of complications and associated health care costs, and improve the quality of life for patients with celiac disease. (celiac disease - hidden and dangerous)

Did you know that Medwire News in November 2010 indicated that dermatitis herpetiformis can go into remission? At that time they were discussing an attempt to wean patients with well-controlled disease from a gluten-free diet and/or using pharmacotherapy, to see if the condition has indeed remitted. Remission was defined as an absence of skin lesions and symptoms for more than two years while not taking sulfones or other therapies and not adhering to a gluten-free diet.

No-one seems to know why it goes into remission. That means that you and your clinician should be aware that if you have had no outbreaks of dermatitis herpetiformis for more than two years, while on a strict gluten-free diet, your condition could have gone into remission and perhaps should be re-evaluated. Since I have not passed the six month mark yet after sixteen years I can skip this one! (dermatitis herpetiformis remission can occur/News-MyDERM)

I must admit that I am wary of this information because I was told by a dermatitis herpetiformis specialist that I would likely be on Dapsone for the rest of my life, and he has not heard of anyone whose dermatitis herpetiformis has gone into remission. If you have, please let us know (case histories needed please!).

The web site "Healthier Talk" lists all the hidden dangers of celiac disease. It says that if you are suffering from celiac disease you should check your vitamins because a new study shows that you could be missing more than eating gluten; you could be badly lacking in critical nutrients. Researchers at the University of Alberta in Canada checked 43 celiac patients between 3 and 18 years of age and found that fewer than half of them had healthy levels of Vitamins K and D (salads and sunshine). The low K levels are probably due to the fact that celiac patients often have a hard time absorbing vitamins. Statistics say that over three million Americans are impacted by this gluten allergy. The low D levels could be for the same reason, but then the sunshine vitamin is one of the world's leading nutritional deficiencies.

More suggestions:
Tell your dentist that you have diagnosed celiac disease. He will then be watching for abnormal tooth enamel, discoloration of the outer part of the tooth, ridging and dull grooved and pitted teeth with edges that can become uneven and rough.

If you or your significant other are seeing a gynecologist for investigations with regard to infertility, have you told him or her that you have celiac disease?
Have you let your Pharmacist know that you have celiac? If you ask him often enough to check with the product manufacturer about whether a flour or gluten binding agent is used in the making of their medication he will probably remember your allergies. (I endured an outbreak of dermatitis herpetiformis all over my scalp, thighs, upper arms and sadly even my ears after using a prescribed liquid medication that had wheat germ in the product and was used in machinery that made other medications made with gluten in them.)

Have you told your hair stylist that you are a celiac and cannot use shampoos or cream rinses or hair sprays that contain wheat germ oil? Five years ago - after another outbreak - my hairdresser checked the shampoo she had been using on my hair and it contained wheat germ oil.

Is your child small for "his/her age"? Is she/he always complaining of abdominal pain or that certain foods make him sick? How many other people in your immediate family have similar symptoms?

Have you asked your local fish and chip shop if they fry their "chips" in the same oil as they cook their battered fish? And are the chips floured prior to frying?
Have you thought of calling ahead to a restaurant prior to going out for a meal with good friends, and determining what, on the menu, would you be able to eat? That means checking the ingredients section at the back of the industrial sized cans, which restaurants are often happy to do during their low traffic hours. It may save some embarrassment when you have to discuss your health problems with a waiter/waitress. Good restaurants are going to care, and they want your business.

News:
Did you know that BIG PHARMA thinks you need drugs? They are hard at work on medications, and even vaccines for celiac sufferers. Most of these drugs are in development stages and only allow disease sufferers to eat small amounts of gluten. There is no word yet on what the side effects may be. However, that has not stopped "Big Pharma" from banking on these medications. They expected them to reach the market by 2012 and do $8 billion in sales by 2019.

Don't wait for these medications. Eat celiac-sensibly now. I have found that every medication has a side effect and it could pick you! Remember celiac disease is not an allergy as some people think of an allergy. It is an autoimmune reaction triggered by exposure to gluten. The immune system attacks its own body, damages the villi in the bowel and wreaks havoc with absorption of the nutrients that your body needs to stay healthy.

December 21, 2012: Scientists say that they are still working on a pill that may one day help people with celiac disease tolerate foods that contain gluten, a protein that is found in wheat.

Alvine Pharmaceuticals ALV003, has progressed the farthest in this quest to bring a drug for celiac disease to market. ALV003 has received fast track designation from the U.S. Food and Drug Administration. Its approach involves a potent digestive enzyme that can help break down gluten before your immune system reacts to it. Phase IIa trials of ALV003, as a treatment for celiac disease, showed promise, and the company said it hoped to begin its Phase IIb trials late in 2012. However ALV003 will not allow you to eat unlimited amounts of gluten. At best, it is expected to protect against smaller amounts of such as that seen in cross-contamination of foods.

It is now estimated that about 2 million people in the U.S. have the disease. Statistics indicate that as many as 1 in 133 people may have it. Among people who have a first degree relative diagnosed with celiac disease as many as 1 in 22 people have it. (celiacdiseasestatisticsemediv.com)

Other news articles show that many people feel better on a gluten-free diet. It may be a difficult diet to follow but it is healthier and forces you to read labels to see how much "junk" goes into a box of cereal.

Dermatitis Herpetiformis
Did you know that dermatitis herpetiformis is listed as a "rare disease" by Ophanet , a consortium of European partners? [statistics about dermatitis herpetiformis - RightDiagnosis.com].

Mine is a multi-tiered family, with myself and my brother diagnosed with celiac disease as adults, and my brother's son diagnosed with celiac disease as an adult. My own adult son finds that he feels much better when he avoids breads and baking. I likely had dermatitis herpetiformis as a child in England, with lesions all over my arms and hands. It was mistakenly diagnosed as having either eczema or dermatitis, depending on the specialist. My nephew knows that he has celiac disease but he cheats and lately he has suffered from dermatitis herpetiformis lesions on the bottom of his feet.

I can usually count back 48 hours and am able to deduce my error. My nephew knows that a hamburger is going to do it to him every time! You eat, you pay. He might be wise to approach the disease with increased determination before it exacerbates and adds another connective tissue disorder to his file.

I was told by the head of the Department of Dermatology at the University of British Columbia, that the gold standard for diagnosing dermatitis herpetiformis is still a rapid response to daily Dapsone ingestion. To have celiac disease and dermatitis herpetiformis requires having a sense of humor because the research changes yearly, if not monthly, and web site statistics are not always consistent.

Dapsone
Please read the side effects to this wonderful drug. It saved me from going mad, shaving my hair off and scratching my legs with a comb! It can cause anemia and one of its side effects is that you do not feel hungry. They call it anorexic, but I do not refuse to eat. I just forget to eat. Unless I look at a clock I do not know it is "time" to eat. For the anemia I was told by the dermatology specialist to take 2,000 mg of vitamin C daily, not the 1,000 mg that is usually prescribed.

It is enough to make you crazy!
Some people with celiac disease believe that if they adhere to a strict gluten-free diet they can be cured and need no further medical or dietary supervision.
A second-hand story: I was told that there is a distinction between U.S. icing sugar and Canadian icing sugar. I found a response on the Web to the question "Is powdered sugar gluten-free?" Powdered sugar is usually gluten-free, but it is important to check the label. Some brands even label the package as gluten-free. Most commercial powdered sugars are blended with corn starch to keep them fluffy. Occasionally some manufacturers have been known to use wheat products instead of corn starch, so always check the label every time you buy.

My last Did you know - You can always make your own powdered sugar just by putting sugar in your blender or food processor until it is fluffy. Then you will know what is in it!

News from the oslo conference, March 1, 2013 - Medical Daily: The widely used method of measuring gluten levels is inaccurate. - your gluten-free beer might not be as celiac safe as you thought.

FDA approved active ingredient quickly relieves itch, rash and pain: Terrasil is the only "itch, rash and pain" skin treatment available that features patented activated minerals, a unique blend of volcanic clay (Bentonite), zinc oxide and magnesium oxide. These three ingredients support the natural production of new, healthy, clear skin. Bentonite absorbs impurities from damaged skin and supports restoration, while magnesium oxide boosts collagen synthesis. Zinc oxide possesses anti-inflammatory and astringent (drying) properties; also essential to the healing process. Activated minerals work harmoniously to begin repairing skin on contact for rapid and incredible results. It is listed on the "Treatment for Dermatitis Herpetiformis Symptoms" web site. It sounds like a commercial but I am buying it anyway and will let you know. One testimonial claimed that within a day the itch was gone and the inflammation went down.

Gluten Free Expo coming to Texas in March! Not enough notice? Too far to travel? Me too, but people who are unable to attend the event in person may sign up to view the conferences via a live stream. Tickets can be purchased in advance via credit card or PayPal on the Expo's official website here: http//www houstonvlutenfreeexpo.com/janet Rinehart (Janet is the chairperson of the Houston Celiac Support Group.

Three new products I can rave about:
"The Nearly Normal Cooking For Gluten Free Eating" I found this under gluten-free cookbooks on amazon $15.99.

"The Nearly Normal Gluten Free Flour Mix" is fantastic! Wow! Even got five out of 5 stars on the web, but I had tried it myself before reading that information. My husband said he could not tell the difference between, what he calls "normal muffins" and gluten-free muffins.

The last one, Heartland Gourmet Gluten Free Chocolate Brownie Mix is also dairy free. Another gluten-free brownie mix for people on the run - Heartland Gourmet Gluten Free Chocolate Brown Mix. It is also dairy free, and you cannot tell the difference, another plus.

Cheers until next time.