Copyright © 2020 - National Celiac Association
Please explore this free comprehensive course for parents & caregivers with a newly diagnosed child or teen. This course is packed with everything you need to know about celiac disease and the gluten-free diet. In addition, there are many downloadable materials and infographics throughout. Learn how to navigate living life gluten-free to get your child on the right track to good health. It is as easy as 1, 2, 3!
Use the green arrows to move back and forth between the slides.
Use this list as a resource for common abbreviations and acronyms used throughout the course.
CD: Celiac disease
DH: Dermatitis herpetiformis
FDA: US Food and Drug Administration
NCGS: Non-celiac gluten sensitivity
NSLP: National School Lunch Program
RDN: Registered Dietitian Nutritionist
USDA: US Department of Agriculture
WBR: Wheat, Barley, Rye
WBRO: Wheat, Barley, Rye, Oats
Celiac disease and non-celiac gluten sensitivity (NCGS) are common.
Gluten-Related Conditions Explained
There are an estimated 200 or more symptoms of CD! Some individuals are asymptomatic and have no symptoms at all. Here are some of the more common ones:
Celiac disease is diagnosed by blood tests and small intestinal endoscopy (biopsy).
Blood is tested for celiac-specific antibodies. These antibodies are proteins in the blood that are produced in response to gluten ingestion.
Here are some of the most common blood tests:
Infographic: Celiac Specific Tests
The next step is an endoscopy of the small intestine, also called a biopsy:
Children and first-degree relatives should get tested for CD:
Certain complications and conditions may be associated with CD.
There is no cure or medication for CD, the only treatment is a strict lifelong GF diet.
WARNING: Supplements claiming to aid in digestion of gluten do not work for CD.
See a Registered Dietitian Nutritionist (RDN)
How to find a dietitian >
It is important that your child has regular visits with their doctor for follow-up and monitoring, your doctor will decide how often you need to see them.
They typically check for:
How long will it take to heal and recover once a GF diet is started?
7 to 30 percent of patients do not improve on a GF diet, why?
There are some common challenges with the GF diet:
Make sure your child:
Click the green arrow to the right to continue to step 2.
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STEP 2: THE GLUTEN-FREE DIET
The only treatment for celiac disease (CD) is a gluten-free (GF) diet. It can seem overwhelming at first. Take one day at a time - or one meal at a time. You can do it!
This module explains what gluten is, what grains and foods are allowed and not allowed, questionable ingredients, label regulations and how to read the label to determine if a food is GF.
Here is a one-week child friendly menu to start you out on the GF diet:
Gluten-Free One Week Menu
Gluten is a plant-based protein found in some grains. It is the most common protein in the human diet. Gluten is what makes baked goods doughy and stretchy, and what makes them fluffy and chewy all at the same time. This is why GF products often are crumbly.
Beware that most commercially available oats are heavily cross-contacted with gluten through crop rotation, processing, and transportation with WBR grains.
NCA recommends the purity protocol, or those companies using mechanical sorting with rigorous, transparent testing and consistently testing below the Food and Drug Administration’s (FDA) standard of less than 20 parts per million of gluten.
Note: Discuss with your child’s doctor before adding GF oats to their diet. In addition to the problem with cross-contact, a very small subset of those with CD also react to avenin, which is the protein in oats.
Read more about NCA’s stance on oats
Read more about confusing ingredients here
The below ingredients are safe even when derived from wheat, because gluten is removed in the processing:
Read more about ingredients here
The grains, flours and starches below are naturally GF, but always make sure they have not had cross-contact with wheat, barley, and rye. Look for a GF label.
Lots of foods are naturally gluten-free if unprocessed such as:
It can sometimes be hard to meet nutrient requirements when on a GF diet, as many GF flours are low in vitamins, minerals and fiber. Below is a list of nutrient-dense GF grains and seeds that will boost your child’s nutrient intake (only buy those that are labeled GF):
Flax Seed (ground)
Check anything you are going to eat or that could potentially be ingested:
How Much is 20 Parts Per Million?
Infographic: What Is the Threshold for Gluten Consumption?
Take home message: It is relatively safe to consume store-bought products labeled GF, but those not labeled GF have a significantly higher risk of containing gluten.
Gluten-free certification is different from gluten-free labeling and is done by an independent third-party organization. It has to follow the same or stricter requirements than the FDA.
Food Allergen Labeling & Consumer Act (FALCPA) requires the top eight food allergens to be listed on the label, including:
NOTE: Barley and rye are not included as allergens! FALCPA does not require any information regarding cross-contamination of foods. (10)
FALCPA applies to:
Does not apply to:
Many food companies will include notice that their products are processed near allergens, however, this is not required. You may see statements such as:
“Processed in a facility/on shared equipment that also processes wheat”
Click here for more information on Allergen Advisory Statements.
“Contains no ingredient made from a gluten-containing grain (wheat, barley, or rye).” (13)
Read more here about FDA on gluten in medications
Information on gluten-free medications: www.glutenfreedrugs.com
Find Compounding Pharmacists: www.a4pc.org
Follow these steps to determine if a product is GF:
Click the green arrow to the right to continue to step 3.
While having celiac disease (CD) or another gluten-related condition does not define a person, living strictly gluten-free (GF) has to become a way of life. This last module will help you to navigate daily life, healthy and GF.
Even small amounts of gluten can make someone with CD sick, therefore a large part of staying GF is watching out for cross-contact with gluten. Cross-contact with gluten means that a food has touched or intermingled with gluten-containing foods/grains or surfaces/utensils that have gluten on them.
Here are some common examples where cross-contact can occur:
Aim to make family meals GF:
Check out our GF recipe finder
Check out Thrifty Gluten-Free - a recipe book with affordable healthy GF recipes
Holidays and celebrations can be a challenge for kids with CD or NCGS. You definitely need to plan ahead. It can be hard to do things at the spur of the moment.
Click here to view a step-by-step list for successful birthday parties. Click here to read an article on how to navigate parties and celebrations as a parent or caregiver of a child with celiac disease or non-celiac gluten sensitivity.
You can still go out to restaurants even if you require a GF diet. It just takes a little more research and education, but you will get the hang of the process quickly. Don’t forget to get your child involved in the process too, as it is a good opportunity for them to learn how to advocate for themselves.
Click here for Restaurant Food Preparation Guidelines
You can definitely enjoy traveling while staying GF, it just requires some additional preparation:
*Note that some foods may not be allowed to be brought to certain destinations, so make sure to check before traveling
Does your child want to go to camp but the GF diet is holding them back?
There are several camps that offer a completely GF experience! Going to a GF camp can be a wonderful and liberating experience for a child with CD, and an opportunity to have fun without worrying about food and reading labels.
Check out our list of GF camps!
It is important to talk to all staff at your daycare provider about your child’s diagnosis and dietary needs. Have a meeting with the staff.
Read an article about communicating with caregivers
It is important that your school knows about your child’s diagnosis. CD is considered a disability so schools have to provide GF food and make other accommodations for you or your child. If your child attends a public school or a charter school they have the right to have a 504 plan:
Infografic: Steps to a 504 plan
Children attending public and charter schools or other schools that participate in the USDA’s National School Lunch Program are eligible for GF meals at school. Schools must accommodate GF diets and provide a safe meal free of cross-contact.(14)
The best way is to incorporate the meal accommodation is the child’s 504 plan. However, a 504 plan is not required to get a meal accommodation. If there is no 504 plan in place, a medical statement from a doctor that states the necessity for a GF diet may be required.
Infographic: Steps to a 504 plan
For more info check out FAQ about school lunches
People with CD are covered under the Americans with Disabilities Act (ADA), this means colleges have to accommodate students on a GF diet.
Check out our College Survival Guide
CD is usually associated with physical symptoms, however there are many psychosocial impacts of CD.
Those who are hypervigilant with a GF diet have may have a lower quality of life. This emphasizes the need for more support services to help those on a GF diet cope. (2)
Find a support group here
When you have CD, you have to constantly be aware of everything you are eating or things that come near your food and mouth. Educating your child on celiac disease and the GF diet as well as teaching kids how to advocate for themselves is key.
It can sometimes be easy to focus on the negative, but we try to focus on the positive. Here are some positive aspects of having been diagnosed with CD or NCGS:
Want to learn more about living life gluten-free? Order the Complete Guide to Gluten-Free Living
Find your ROCK group here
Become an NCA member here