Did You Know? (Autumn 2014)

Celiac.com 08/15/2016 - Let's celebrate the good news first, and leave the disappointments until the end, where they belong.

Did you know that we are powerful when united? 5/19/2014 - The NFCA's Kristin Voorhees, MA, Director of Healthcare Initiatives, explains how advancing research lies in the hands of people living with celiac disease. A quick e-mail to a company that claims to have gluten-free food and does not even know the meaning of "gluten-free" needs to be educated and may even appreciate a quick note from you.

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For instance, a fellow celiac sufferer recently telephoned a company that carried gluten-free muffins to tell them that the inserted package of blueberry filler contained wheat flour, and since there was no e-mail site listed she asked for a full refund on the product and payment of her telephone call. She had the nerve to do it and received full compensation plus the cost of her long distance telephone call. She also received several coupons for other products claiming to be gluten-free.

I, too, returned something that listed "gluten-free, wheat free, and even listed itself as "celiac friendly". They did not list an e-mail address so I asked for a refund and the cost of the postage stamp. I could not believe it when I received the entire refund; even though I had to use the money to purchase another product in the same store, I felt I had won a small battle.

Did You Know that a little advance work from you can get you a gluten-free Dairy Queen cake? I went in three years ago and explained my allergy to gluten, indicated that I could not even tolerate a cookie crumb coming into contact with my Dairy Queen cake, "Which I loved so much". It would have to be made separately and the person would have to wear gloves when preparing it. The whipped cream topping needed to be pure whipped cream.... and boldly I listed how deathly ill gluten can make me. They used frozen strawberries as the base, had the two types of ice cream and the fancy topping and I have never been sick eating the family Birthday cakes. Their ice cream has never contained gluten and I have tried this in the United States and Canada and have become well known in both stores.

Did You Know that Campbell's three mushroom, cream of mushroom soup suddenly changed their recipe? We always bought the three mushroom cream soup. Thankfully, my husband now carries a magnifying glass with him when he shops. Without any notice, they added flour to the soup and I have written to them. I received an apology and numerous coupons.

Did You Know that Catelli now had a "Pasta Freedom" line of pasta products? In the mail in May a small catalogue arrived listing their pastas, numerous recipes and a $1.00 coupon off any Catelli gluten-free pasta product. It is made in a dedicated gluten-free facility and has a web page to visit called catelliglutenfree.ca. There is also a U.S. web site; it took me two minutes at most to send a line to them essentially stating "Good on you Catelli". On June 2nd I received a further $1.00 savings coupon and was asked to tell my celiac friends about their certified site. That made my day!

Did You Know that manufacturers such as Bob's Red Mill and Pamela's Products test for the presence of gluten as an extra layer of protection? They have websites such as BobsRedMill.com, and PamelasProducts.com, If you find a flour or mix you really like and want to buy it in bulk rather than the small packages, try searching it at Amazon.com.

Did You Know that the NFCA declared May to be Celiac Disease Awareness Month through their "Our Heroes Within Us" campaign? Celiac disease is no longer a "rare" disease, and though there is still work to be done, we truly have come a long way. Who would have thought that Robin Hood Flour would produce a gluten-free flour in a large bags?

Every time you talk to someone both in and out of the gluten-free community you are a Hero; we do not choose to follow this restrictive diet because of weight loss. Every week the NFCA will unveil a community member who is having an impact on the lives of those around them.

DID YOU KNOW: I am still raving about the Allergy Free Restaurant Translation Cards? They really help communicate your special dietary needs in foreign countries. They offer basic phrases in various languages about your gluten concerns, specific ingredients, and preparation requests. They come in Arabic, Dutch, French, German, Greek, Italian, Korean, Latvian, Norwegian, Portuguese, Russian, Spanish, and Swedish. It comes in either paperback or e-book format. If you have a smart phone download the FREE Travel Checklist app to jump start your planning efforts detailing airlines, meals, snacks, hotels, cruises and foreign language considerations. Chef dining cards for gluten-free and celiac/coeliac travel will get you to their web site.

Did You Know; the top SIX supplements for celiac disease and gluten sensitivity? Melinda Dennis, MS, RD,LDN, nutrition coordinator of the Celiac Center at Beth Israel Deaconess Medical Center and lead nutrition author for CeliacNow.org indicates that a family multivitamin/mineral supplement is a base-line protection for getting a lot of the key vitamins and trace minerals that are not present in your diet. Make sure your supplements are gluten-free bearing the gluten-free label indicating they contain under 20 ppm gluten. Natural does not always mean safe! Look for chelated minerals and gently absorbable formulations, like calcium citrate, minerals that come in oxides like magnesium oxide, are not the most easily absorbed formulations.

Calcium is really important but it is also easy to overdose. Melinda Dennis says that she tries to get patients to reach their calcium goal through diet and then make up any difference with a calcium supplement. Calcium citrate is better absorbed than calcium carbonate, plus it does not cause as much gas or boating. It should also contain vitamin D and magnesium to help with absorption. Vitamin D: almost everyone needs vitamin D as it is so protective. It helps heal the small intestinal lining, helps with hormone regulation, and helps calcium absorption. It helps prevent colon cancer and is a mood enhancer. It is naturally produced by skin exposure to sunlight.

B Complex or B12: B vitamins can help with flagging energy and fatigue, since they are important for metabolism, red blood cell production, and tissue repair. Also, when the stomach is damaged, the body cannot absorb vitamin B12 properly, sometimes leading to a B12 deficiency. The B's are water soluble so your body mostly gets rid of anything you don't need. They are good when you are travelling, have high stress, or when fatigued. Be careful though, as synthetic B6 (pyridoxine) taken for prolonged periods at high doses can cause nerve damage.

Zinc: Many people newly diagnosed with celiac disease have low zinc. This trace mineral is involved in over 200 enzyme systems in the body and is responsible for growth and development, helping to heal wounds and protecting our immune system. It can also help with quality of our fingernails, skin, gums and hair.

Did You Know That the pharmaceuticals associations in the U.S. and Canada make a directory sized book available to every pharmacy or drugstore in the country? Try going to the pharmacy that you deal with and asking them for their out-dated issue of the compendium and see if they will give you their out-dated copy. It contains the names of the companies producing the drugs and their e-mail or web pages. This is the perfect way to check whether the drug or vitamin you are taking is actually gluten-free. I was taking a drug that was in pill form and made on machinery with other pills containing gluten. Having dermatitis herpetiformis which restricts ingesting gluten I broke out in DH sores in some amazing places - in my ears, back of my knees and chest as well as the places considered normal for the IgA deposits. I itched and stung as I scratched the tops off the lesions and had to go on Prednisone for two weeks. Is there anyone else out there that has had to take Prednisone and found it made them irritable, and as my husband stated, "it makes you really weird and wired".

Now the BAD NEWS: According to Jason Clevenger, PhD, research editor for Gluten-Free Living, who is a principal scientist with the consulting firm Exponent, Inc., and is the former editor of a Boston celiac support group, there is more evidence that ancient strains of wheat are as toxic to those with celiac disease as more modern types. Researchers harvested immune system cells from thirteen patients with biopsy proven celiac disease. They then tested the response of the cells to ancient and modern strains of wheat, including varieties known as spelt and kamut. All of the strains tested, regardless of being ancient or modern, triggered responses in the immune cells. The CONCLUSION; This report adds to the evidence that kamut, spelt and other wheat varieties should be avoided on a gluten-free diet. They provoke the same immune system response in those who have celiac disease as more modern strains of wheat. "Evaluation of the safety of ancient strains of wheat in celiac disease reveals heterogeneous small intestinal T cell response suggestive of celiac toxicity." That is from a report dated February 14, 2013 by Sulgo T.Gregoin.