Newly Diagnosed with Celiac Disease – Getting Started on the Gluten-free Diet
A celiac disease diagnosis changes your life. This section is intended to help you navigate to helpful resources to guide you on your way.
This is a brief introduction to the gluten-free diet (GFD) to help you get started on your journey to better health as someone newly diagnosed with celiac disease. See a registered dietitian for detailed dietary information, needs assessment and education. The GFD is a diet for life and should never be started before a small intestinal biopsy is positive for celiac disease.
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CCA has teamed up with Alberta Health Services to help you learn about living gluten free.
What is gluten?
Gluten is a general name for specific proteins in certain grains. The gluten in wheat, rye, and barley cause a toxic reaction in people with celiac disease preventing the absorption of essential nutrients.
Gluten-Containing Foods and Ingredients:
- Malt Extract**
- Malt Syrup**
- Malt Vinegar**
- Oat Bran***
- Spelt (Dinkel)*
- Wheat Bran
- Wheat Germ
- Wheat Starch
* Types of wheat ** Derived from barley *** Small amounts of pure, uncontaminated oats are safe for those with celiac disease, however the availability of pure oats remains a problem. Most commercially available oats are contaminated with wheat or barley.
Reading Food Labels
New food labelling regulations in Canada came into effect on August 4, 2012 that apply to all packaged food sold in Canada, no matter where it was manufactured. The regulations require that the ten priority allergens, gluten sources, and added sulphites of 10 ppm be identified using plain language either in the ingredient list or in a Contains statement that appears immediately after the ingredient list. Manufacturers have a choice about which method they choose to use.
When you check for gluten, you may need to check two places:
- The WARNINGS section – CONTAINS, MAY CONTAIN.
- The INGREDIENT list
Step 1: Warnings.
Start with the WARNINGS. You are looking for wheat, rye, barley, oats or gluten. If you see wheat, rye, barley, oats or gluten, in either the CONTAINS or MAY CONTAIN list, the product is NOT OK.
If there is a CONTAINS statement, and it does not include wheat or a gluten grain, the ingredients are acceptable for a gluten-free diet.
If the ingredient list just says oats, assume they are contaminated with gluten, unless they are specifically identified as pure uncontaminated oats or by the source (Cream Hill Estates Oats, Only Oats, etc.).
Step 2: Ingredient List.
If there is no CONTAINS statement, check the INGREDIENT list. You are looking for wheat, rye, barley or oats. If you see wheat, rye, barley, or oats, the product is NOT OK. If you do not see any gluten source listed, the ingredients are acceptable for a gluten-free diet.
Plain names must be used for all allergens: WHEAT, MILK, EGGS, etc. Allergens cannot be hidden in ingredients like seasoning or natural flavour.
If one allergen is listed in a CONTAINS statement, then all the allergens including gluten must be listed.
The only warnings that have official meanings are CONTAINS and MAY CONTAIN. All other warnings (“made in a plant that also processes wheat “etc.) can only be understood by contacting the company.
Manufacturers change the ingredients in their products from time to time. A product that does not contain gluten might contain gluten in the future. Products that you might not imagine could contain gluten may have unexpected gluten ingredients. The only way to be sure is to read the ingredient list every time you buy a product.
People who need to eat gluten free need to check both the ingredients in food and any cross-contamination with gluten-containing ingredients that might happen when the food is manufactured, packaged and prepared for eating.
When you think about avoiding cross-contamination, you need to realize that crumbs matter. Look around your kitchen to see where there are crumbs – on the counter top, in the microwave, on the cutting board or in the corners of your metal baking dishes? Anywhere you see crumbs is a potential place for cross-contamination.
At home the following practices will go a long way toward avoiding cross contamination:
- A celiac should have their own butter dish and a cutting board that is used for gluten free foods only.
- A celiac should have their own toaster. A toaster oven, where the rack can be removed and washed if others have used it may be a good alternative. If you do not have access to a separate toaster, try a toaster bag, a silicon bag that holds the bread while it is toasted. The bread toasts right through the bag.
- If it is not practical to have a section of the counter top set aside for preparing gluten free food only, always make sure that the counter space you are using to prepare gluten free food is freshly washed to ensure it is free from crumbs or flour dust.
- Do gluten free baking first, and have it well wrapped and stored before doing anything with regular flours. Flour dust (in the air) from regular flours could settle on the gluten free products, thus contaminating them.
- Note: Although this doesn’t fall into the cross contamination area, it is worth noting that a Celiac should take precautions against breathing in flour dust when using other than gluten free flours. Flour dust that settles on the nasal passages may eventually get swallowed and end up being digested.
- When making sandwiches, do the gluten free ones first – otherwise be sure to wash your hands after touching regular bread and before touching gluten free supplies.
- Use clean utensils and avoid “double dipping” – knives or spoons are OK the first time, but once they have touched food with gluten, they can contaminate the food in the container if used again. If it is too difficult to train other family members in this regard, it would be wise for the celiac to have their own jar of jam, peanut butter, mustard, etc.
- Be especially alert and cautious when you have guests helping in the kitchen – they will not have your gluten awareness. Also, it is when you are otherwise distracted that you are more likely to make a gluten error.
- Make sure any pots, utensils, etc. that are used for other foods are thoroughly scrubbed before using for gluten free foods. In the case of something like muffin tins, paper liners may be a worthwhile consideration.
- It is best to have a separate set of utensils with porous surfaces, such as wooden spoons, for your gluten free baking. These utensils might retain some gluten particles after cleaning.
- If using lentils, be sure to meticulously pick them over before putting in the pot to cook. Even if you buy them packaged, it is not uncommon to find kernels of wheat or oats (or pebbles) in with the lentils.
Away from home, be aware of sources of cross contamination:
- Products in bulk bins can become contaminated by using the scoops in more than one bin. There is no assurance that the other customers will be as cautious as you. Also, flour dust in the air around these bins can cause a problem.
- At the deli counter, where gluten free meats are being cut using the same utensils without cleaning in between or where cut meats often overlap on the counter.
- Buffet lunches, where the chef tests the temperatures in all the dishes using one thermometer, or spoons are used for more than one dish.
- French fries cooked in oil where battered foods have been fried.
- Meat cooked on a grill which hasn’t been cleaned after cooking regular food with gluten.
- Gluten-free pasta may be cooked in water used for regular pasta and rice may be cooked in broth containing gluten.
- Milling of gluten free grains on equipment that has been used for regular grains.
- In product production where a gluten free product is not produced on a dedicated line. Cereals and candy bars that have gluten free ingredients may be produced after a non GF item without having the equipment cleaned thoroughly in between.
Adapted from an article prepared by the CCA Calgary Chapter.
Gluten in Medications
Gluten in Cosmetics
Gluten in personal care products and cosmetics, is a common concern among patients with celiac disease and other gluten-related disorders. As these products are applied around or inside the mouth there is a concern for gluten ingestion. Small amounts of these products may be accidentally swallowed, especially lipsticks, lip balms and toothpastes. Gluten absorption through the skin has not been proven to be toxic for patients with celiac disease as it cannot cross from the skin blood vessels into the intestines. It is possible that some gluten may be ingested if the person does not wash their hands after touching products prior to eating. In order for gluten to cause damage in people with celiac disease, sufficient amounts of gluten must be swallowed and pass into the small intestine where the damage occurs. The question is, can enough gluten be absorbed from any of these products to cause the intestinal damage?
There have been a limited number of studies that have looked at the gluten content in these personal care products. One recent study (2019) from Italy tested 66 oral hygiene products and cosmetics, even though none of the ingredients in these products came from wheat, barley or rye (1). The researchers studied 36 toothpastes, 2 dental tablets, 5 mouth washes, 10 lip balms, 13 lip sticks. These products were selected as they are from popular Italian stores and pharmacies. Though many of these exact products are not available in Canada, some were from large companies that also supply products in Canada. In dental tablets, mouthwashes and lip-balms the gluten level was within limits not expected to cause problems in celiac disease (ranging from undetectable to 12.2 ppm). Thus 94% of the products tested were considered gluten-free and safe to use by a celiac patient. There were 4 products (3 toothpastes and 1 lipstick) that showed a gluten level > 20 ppm (maximum 35 ppm in one toothpaste brand). However, the maximum amount of gluten that could be ingested in the toothpaste (average of 0.25 grams of toothpaste per cleaning x 4/day) would be approximately 0.037 mg gluten. This level would be based on the assumption that a person consumed the entire 1 gram of toothpaste over the day, which is a very unlikely scenario.
A second, smaller US study from 2012 tested 4 lip products and 2 body/face lotions (2). In this study, the products were specifically chosen for testing as they contained at least one ingredient derived from gluten or oats (as they are contaminated with gluten). There was no quantifiable gluten in any of these 6 products.
Overall, the evidence suggests that it would be rare for enough gluten to be absorbed into the intestine following exposure from cosmetics, shampoo, other toiletries and skin care products. The vast majority of products have a negligible amount of gluten and given the small amounts (if any) normally ingested, gluten contamination in oral hygiene and cosmetic products is unlikely an issue for patients with celiac disease. A further advance has been the decision by many manufacturers to indicate that their products, such as toothpaste and mouth rinses, are gluten free, providing additional reassurance for patients with celiac disease.
1. Verma AK, Lionetti E et al. Contribution of oral hygiene and cosmetics on contamination of gluten-free diet – Do celiac customers need to worry about? JPGN 2019; 68: 26-29.
2. Thompson T, Grace T. Gluten in cosmetics: is there a reason for concern? J Acad Nutr Diet 2012; 112: 1316-23.
Finding Reliable Information
The Internet is full of information about celiac disease, gluten sensitivity and the gluten-free diet. Not all of this information is valid, useful or accurate. Separating Internet myths from fact is a key piece of being comfortable with eating gluten free.
The quantity of information is staggering and it comes in so many forms – from blog entries to dense scientific articles. On top of sorting through the huge quantity of information, you also have to deal with a very uneven level of quality.
Some of it is sheer speculation without a shred of proof; some is the result of years of painstaking study and research. Some of it comes from people who want you to buy something (or not buy something) and some of it is offered with the best of intentions.
I don’t think a lot of people specifically try to create fear maliciously, but sometimes they repeat information they have heard from other people who have either misunderstood something or who have drawn conclusions that are absolutely unwarranted based on fact.
Here’s an example. I was sent a newsletter that basically said “there seems to be am Internet controversy about whether enriched rice is safe because there might be gluten in the enrichment coating so I suggest you avoid it”.
I went looking for the Internet controversy and found one blog post that suggested this might be true, but with no supporting evidence. That same blog post was picked up and reprinted verbatim in about 10 other blogs. Now there were 10 sources that showed up in a source making this allegation, and unless you went look closely like I did, you wouldn’t realize that 9 of the 10 sources were simply repeating the same unsubstantiated claims.
Figuring out whether a particular source is reliable is not an easy thing – it takes detective work. You have to figure out where to look and what clues to look for. You may run into way too much information or not enough at all. The easy way is to just accept whatever you find, but this may not be the best solution.
How do you evaluate information?
First, look at the date of the information. Information that is even a year old is often out of date when it comes to specific product data. An article that said Corn Chex was not gluten free would have been correct in 2008 but by 2009 it was wrong.
Sometimes you can tell how credible a statement by the evidence that is presented to support it.
One of my favorite Internet myths is the rumor is that some tea bags are sealed with a wheat paste. If that was the case, the tea from those bags would not be acceptable for someone who needs to eat gluten free. There are lots of Internet blog posts and email messages and web sites that repeat the myth, but the next sentence is virtually always something like “I called company A and company B and company C and they told me they don’t use wheat paste to seal their tea bags”. I have yet to find someone who has found a company that actually does this. “But it might be true” is usually the final sentence.
Hmmm. Doesn’t sound there is a lot of credibility to this myth.
I took it further and looked for information on how tea bags are actually sealed. I found some industry pages and some companies that make machines that seal tea bags and some tea companies that were trying to debunk the myth about sealing teabags with wheat paste. What did I learn? Tea bags are generally sealed in one of three ways: heat sealed with a bit of plastic, crimped where the top and bottom of the bags are pressed really hard together, or folded and stapled. When I pushed really hard at one person who was making a tea bag claim, they sent me a notice that a “food grade” glue had been approved by the World Health Organization for use in manufacturing tea bags. No information about the ingredients, nothing that even hinted at wheat. From this, they justified spreading the information that this was something people should worry about.
Does this mean that all tea is gluten-safe? No. Some herbal or flavored teas contain barley malt, but black, green, oolong, and white tea are all naturally gluten free and grow in areas where gluten grains do not grow.
If you have time and a detective bent, do your research. When you read a new “fact”, make sure you check the credibility of the information and the source before you pass it on or change your behavior.
If you don’t have the time for this, join a large national support group and read the information they send you. They will keep you up to date with the latest finding and will only pass on credible information. Look for a group that has a professional advisory board who vet new finding to make sure that the you hear about important findings but don’t get overwhelmed with rumor.
A few people with gluten sensitivity have told me that they are concerned about joining a “celiac” group. They don’t have celiac disease, after all. My answer is that the people with celiac disease are the most sensitive to gluten – even more than those with a wheat allergy. If you follow the advice for gluten that comes from those groups, you will definitely be safe.
Updated May 2020