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Be An Informant and Help Us Spread the Word!

Celiac.com 05/26/2015 - This may be the last week of Celiac Awareness Month, but you can still help us! This year I hope literature got to you soon enough to get you "on board" informing people about what celiac disease is and just what gluten intolerance is. For years many people reported having celiac-like symptoms—abdominal pain, fatigue, foggy mind, joint pain, tingling of the extremities, even depression, but repeatedly tested negative for celiac disease, and yet responded positively to the gluten free diet.

Photo: CC--Scott MaxwellSo many people are still unaware of what celiac disease is, what a celiac can and cannot eat, and what
signs to look for in their own bodies regarding celiac disease. The Celiac Awareness Month campaign runs right through until May 31st, and YOU can help inform people about gluten sensitivity and celiac disease. It is also a time for you to reach out to other people in the celiac community, share your recipes and what you have learned living the celiac life.

ONE IDEA: Approach your local bakeries and restaurants. Ask at the bakeries whether they carry gluten-free foods. If they look confused, explain celiac disease to them and how difficult it often is to get really safe gluten-free food. If they point to items that they have that are gluten free, and not wrapped up or kept separate, explain nicely about cross-contamination and how strict you need to be with your diet.

If you have Dermatitis Herpetiformis, which also requires a totally gluten-free diet, and is often thought to be stress-related, and the bakery assistant appears to be interested and has the time to listen, tell them how you suffer when an outbreak occurs. If you are gluten sensitive you can explain how gluten sensitive does not necessarily mean you have celiac disease, (between one and three percent of the population may be gluten sensitive according to the University of Chicago's Celiac Disease Center).

If you are gluten sensitive it makes sense to avoid ingesting gluten as much as possible. If you continue eating something that makes you sick, bloated, and all the other symptoms that go along with gluten sensitivity do not continue challenging your body with something that makes you feel unwell why keep challenging your body? Again, according to the Chicago Celiac Disease Center, you are on a crash course for full blown celiac disease.

My husband and I have had "Fun" this month going to stores and asking where their gluten-free foods are. Often they are mixed up with other foods such as a gluten-free cereal with all the other cereals. But many times these same stores have a specialty aisle devoted to the diabetic, those with celiac disease and those on special diets, such as "Heart Healthy" foods for the person with high cholesterol, or "low salt" foods for those with high blood pressure.

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We went to Granville Island in Vancouver last week. This is a big market with numerous bakeries. Many said they had gluten-free cookies, or breads but they were sold out by noon. My husband smiles charmingly and says, "I think that indicates you need to make more gluten-free foods. Celiac disease is becoming extremely common. My husband, who is not the celiac, even had the nerve to ask a young woman if she knew what foods a celiac could not eat; (he has quite the nerve). She listed flour, but also said potatoes!

For us the most exciting thing to occur this month was something we were able to do ourselves. I wrote to the two Langley free newspapers, the Langley Times and the Langley Advance, and mentioned that May was Celiac Awareness Month in the United States and Canada and would they accept an article from me listing just what celiac disease and gluten sensitivity was and how they could inform the public. I received positive results and was very excited. I was able to give them the statistics regarding how long it takes for a celiac to be diagnosed, how some physicians are not even aware of all the symptoms, and how they differ from person to person. I was able to give them the statistics from 2010, and how the auto immune disease has increased yearly in the United States and Canada. Listing the local chapter and the U.S. and Canadian Celiac Associations web pages I crossed my fingers and hoped that at least most of the information would get into the local newspapers.

It was a triumph when it appeared, and managing to switch the wording around from paper to paper they left out little. YOU CAN DO IT TOO. You may be too late for this year, but maybe not. You can STILL write to your local paper and tell them that this year has been the best advertised and informed year for celiac disease and the gluten sensitive, and next year you hope to do even better.

It is when Fox News and U.S. news get involved in mentioning that May is Celiac Awareness Month that you feel we have arrived, (or almost). After contacting the main grocery stores in the lower mainland it almost made me quite teary to find inserts sheets in some of the grocery sales fliers listing their sales on gluten-free products. Wow! The bread is so expensive and to receive coupons with even .75 cents off, or $1.00 off is like gold to us! Progress is going into the Safeway bakery and see their frozen food section (fully expecting to find frosted bread and some muffins), and find that they have decorated cakes, cheesecakes and these fancy little decorated cupcakes all certified gluten-free. I was like a child in a candy shop. My husband did slow me down a little, and he did ask if they had considered the icing sugar and the decorations and whether they were also gluten-free.

CHALLENGE YOURSELF until the end of this month. Every time you go grocery shopping ask the bakery assistants for the gluten-free section, and be sure to look very disappointed when you find out they do not carry any gluten-free foods. It does not happen as often now because we are learning, just like the peanut allergy people have had to do—we also need to eat and not get sick.

AND we need to unite and fight for the right to be able to trust the gluten-free foods without getting out our magnifying glass and reading every label and box.

I did mention the certification logo we have for guaranteed gluten-free, the two wheat sheaves crossed, and hope next year to be even bolder, contacting the Vancouver Chapter, the Victoria Chapter, Washington Chapter at the beginning of April to see if we can unite and advertise to a broader section of local communities this under-diagnosed, under-recognized auto-immune disorder.

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1 Response:

 
Brenda Bentley
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
29 May 2015 5:37:45 AM PDT
I loved this article because so many times when I say I have celiac disease people are so vague about what it is. It is a totally different way of eating but it is possible. This article announces that it is important for us to eat gluten free and with so many bakeries and stores now carrying gluten free products it's nice to have a choice to choose from.




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Yes the first has wheat gluten in the ingredients, the second via the wheat flour. Here in the UK manufacturers HAVE to highlight gluten sources. Check the ingredients and if WHEAT, BARLEY, or RYE are mentioned *usually highlighted, italicised or underlined, then you will know there's gluten. Most of iceland's processed foods will probably be gluten filled to be honest. Any breadcrumbed or battered foods for instance. Ps, you and me both have another disease, the british one of apologising You don't need to, you're very welcome here and all of your questions are valid and understandable. It's going to get better

Hi, I am deeply sorry for posting on here again. As I am scheduled for an Endoscopy on the 9th May, I wanted to make sure that my gluten intake is being kept the same. I was wondering if the ingredients to these products contain gluten even though dextrose is in one of them? http://groceries.iceland.co.uk/iceland-32-breaded-chicken-nuggets-448g/p/52275 Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage. http://groceries.iceland.co.uk/iceland-10-breaded-chicken-burgers-550g/p/52276 Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage. Thank you for all your help so far,

JMG got it down pretty much, the painful and gluten effects from eating it should clear up in a month, damage symptoms you might notice some differences as early as 2-4months but most do not noticed major improvements til about 6 months to a year. I have been gluten-free for over 3 years all my villi have healed according to the doctor on my last scope. It is very important to not cheat and avoid any kind of CC as it can set you back weeks or months. I would suggest a whole foods only diet for the first month or two, no dairy, simple stews, soups, etc. make for easy to digest and simple meals. Check out the 101 thread for some good information. PS a new combo crockpot, steamer, rice cooker combo and liners for a crock pot will be a life saver for making simple meals and easy clean ups. Quick cook microwave ware will also be handy making sure you have gluten-free cooked meals if you can not get new cookware immediately. I normally suggest cleaning out the entire house, scrubbing down knobs, handles, on the drawers, sink, fridge, cubbards etc. throw out condiment jars, checking ingredients on everything in the house including your hygiene and makeup. Putting in drawer organizers for new utensils, throwing out scratched glass, teflon, plastic, and steel cookware. Throwing out any Tupperware, and cutting boards, some utensils that can not be cleaned well. Some times you can save cast iron and stainless steel cook ware if you can run it in your ovens cleaning cycle over 600F. Gluten is a protein like blood if you can not clean a item where a CSI team will not find it give it up, it is not a germ that can be killed with disinfectant. I use freezer paper for clean prep surfaces, also makes clean up a breeze, I tend to use gloves alot also when fixing foods,

Hi Allie and welcome First off, I know 3 years was a long wait, but at 17 you've figured out celiac way before many people do. That should make a big impact on minimising its effects and helping you with the diet, so, bizarrely enough, congratulations! A lot of good advice has been brought together in this thread: Don't worry that your symptoms are bad now. As you follow the diet your body will begin healing itself and you're still very young so hopefully this will go really smoothly. Think in terms of the next 6 months rather than weeks however, recovery will likely take a little time. Eat as healthily as you can, lots of whole foods and try to avoid the gluten free processed substitutes as your digestive system needs all the help it can get at this moment. You may want to avoid dairy as well for now and think about reintroducing it later. This site has been really helpful to me and others. I hope you find it just as useful. Best of luck! ps, your increased reaction to gluten during the challenge phase was perfectly normal. Many find that reintroducing it much worse than the initial affects and take some time to get over the challenge. That's why you'll see lots of posts here urging folks to 'stay on gluten' till their testing is complete! PPS( ) Inasmuch as your post can convey emotion, your's seemed positive Stay that way! At times the diet can be a bit isolating and some friends and family may struggle to understand. I'm sure it will be difficult at times making good choices and staying vigilant when everyone around you doesn't have to think twice. Stick with it, your health is paramount and it will be worthwhile. In time your good friends will get it and those that don't aren't worth worrying about. There are great foods you can eat and if not, learn to cook them yourself

Hi! My daughter is 19 was diagnosed at age 16. It took about 12-18 month s for her to fully heal from the damage and feel "normal" again. Also because of the damage done she had reactions to dairy, so you may want to try no or minimum dairy until youre fully healed. Just a suggestion. Hope you start feeling well soon!