GETTING STARTED: GF IN 1, 2, 3

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!

This course contains three steps:

• Step 1: Understanding celiac disease
• Step 2: The gluten-free diet
• Step 3: Living gluten-free

Use the green arrows to move back and forth between the slides.

Let's get going!

STEP 1: UNDERSTANDING CELIAC DISEASE

WHAT IS CELIAC DISEASE?

• Celiac disease (CD) is a genetic condition where the body reacts to foods we ingest that contain gluten
• CD is an autoimmune disease – Autoimmune means that the body’s immune system attacks itself and in the case of CD, the immune system attacks the villi in the small intestine when gluten is ingested
• Villi are very small fingerlike projections that significantly increase the surface area of the small intestine. The function of the villi is to absorb nutrients from food and into the blood, so that the body can use them
• When gluten is ingested the immune system attacks the villi which gets blunted, causing the surface area and ability to absorb nutrients to severly decrease 
• There is no medication or cure available to treat CD. The only treatment is a strict gluten-free (GF) diet

OTHER NAMES FOR CELIAC DISEASE

• Celiac sprue
• Gluten-sensitive enteropathy
• Coeliac (pronounced celiac and commonly used in UK/Australia)

YOU ARE NOT ALONE

Celiac disease and non-celiac gluten sensitivity (NCGS) are common.

• About 21 million people in the United States have either CD or NCGS
• About 1 percent of the population has CD = 3 million people and about 6 percent have NCGS = 18 million people

CELIAC DISEASE STATISTICS

• 1 in 100 in the general population
• 1 in 22 with a first degree relative with CD (mom, dad, sibling)
• 1 in 39 with a second degree relative (aunt, cousin etc.) (1)

OTHER GLUTEN-RELATED CONDITIONS

DERMATITIS HERPETIFORMIS (DH)

• DH is a different manifestation of celiac disease where the immune system attacks the skin creating an itchy blistering rash when gluten is ingested
• It may be present with or without damage to the small intestine
• It is diagnosed via skin biopsy by a dermatologist
• The treatment is a strict gluten-free diet and may also include medications to manage symptoms

Gluten-Related Conditions Explained

OTHER GLUTEN-RELATED CONDITIONS (continued)

 NON-CELIAC GLUTEN SENSITIVITY (NCGS)

• NCGS is an intolerance to gluten ingestion that may show some immune response, but little to no villi damage
• Symptoms may be similar to CD
• It affects about six percent of the population
• CD and wheat allergy must be ruled out before a diagnosis of NCGS is made
• The treatment is a GF diet (2)

Gluten-Related Conditions Explained

OTHER GLUTEN-RELATED CONDITIONS (continued)

 WHEAT ALLERGY

• This is an allergic immune reaction to wheat ingestion, and involves a different branch of the immune system than CD
• It may include a reaction in the skin, mouth, lungs, and/or GI system
• Wheat allergy should be diagnosed by an allergist
• The treatment is a wheat-free diet and may include medications to manage symptoms

Gluten-Related Conditions Explained

SYMPTOMS OF CELIAC DISEASE

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:

NON-GASTROINTESTINAL

• Fatigue
• Depression
• Joint pain
• Muscle aches, cramps
• Skeletal pain
• Peripheral neuropathies
• Skin dryness
• Menstrual irregularities
• Dental abnormalities
• Brain Fog (2)

HOW IS CELIAC DISEASE DIAGNOSED?

Celiac disease is diagnosed by blood tests and small intestinal endoscopy (biopsy).

BLOOD TESTS

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:

• EMA (anti-endomysial antibody): 95% specificity/sensitivity
• tTG IgA (anti-tissue transglutaminase antibody): 95% specificity/sensitivity
• Total IgA (if deficient may need alternate testing)
• Anti-DGP (deamidated gliadin peptide): used for patients with total IgA deficiency

Infographic: Celiac Specific Tests

HOW IS CELIAC DISEASE DIAGNOSED? (continued)

ENDOSCOPY

The next step is an endoscopy of the small intestine, also called a biopsy:

• An endoscopy is considered the “gold standard” for diagnosing CD
• During an endoscopy, an endoscope (small tube with a camera at the end) is passed down the throat, stomach and into the small intestine
• It allows the doctor to check the digestive tract for inflammation and damaged villi. Tiny pieces of the surface of the small intestine are taken out for examination (biopsy)

COMPLICATIONS

Certain complications and conditions may be associated with CD.

• Those with CD are at risk for other autoimmune diseases
  • Hashimoto’s thyroiditis
  • Type 1 diabetes
  • Sjogren’s syndrome
  • Rheumatoid arthritis
  • Addison’s disease
  • Autoimmune liver disease
  • Lupus
  • Vitiligo (loss of skin pigment)
• Refractory CD – is a rare condition where the intestine does not heal in response to the GF diet
• Malignancies (cancers)
  • Risks normalize to the general population’s risk within 5 years on a strict GF diet (2)

TREATMENT

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.

• Some people may need treatment for vitamin and/or mineral deficiencies
• Those with anemia may need iron, B12, and/or folic acid supplementation under supervision (2)

See a Registered Dietitian Nutritionist (RDN)

• A registered dietitian nutritionist or RDN is a health professional specializing in food and nutrition.
• It is important to find a dietitian that is familiar with CD and the GF diet. A dietitian specializing in celiac disease can help you or your child get started on the GF diet, and also help you with any problems and adherence to the GF diet
• A dietitian can also help you achieve a healthier balanced diet and address any existing nutrient deficiencies

How to find a dietitian >

FOLLOW-UP

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:

• Celiac-specific antibodies to see that everything is going well, and if the diet is working (a tTG and/or DGP tests will help indicate how well the diet is working)
• Your child’s growth -weight, height
• Total blood count
• Vitamin and mineral deficiencies such as iron, zinc, B6, B12, Folate, vitamin D
• Thyroid and Liver functioning screening (2)

HEALING TIME

How long will it take to heal and recover once a GF diet is started?

• It takes time for the small intestine to heal. Healing begins within days, but usually takes weeks to months to years to fully heal. The cells in the intestinal wall regenerate every 72 hours if they are not exposed to gluten
• Healing time is individual
• There may be a secondary condition causing delay in healing – follow-up with your physician (2)

BARRIERS TO HEALING

7 to 30 percent of patients do not improve on a GF diet, why?

• Most often due to dietary indiscretion or inadvertent exposure to gluten
• Lactose intolerance, fructose malabsorption or other carbohydrate intolerances
• Poor absorption of Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols (FODMAPs)
• Small intestinal bacterial overgrowth (SIBO)
• Other food allergies/intolerance (soy, corn, etc.)
• Pancreatic enzyme deficiencies
• Microscopic colitis
• If all ruled out, doctor may consider refractory CD, which may require steroids (this condition is rare)
• There may be an other secondary condition causing delay in healing – follow-up with your physician (2)

CHALLENGES WITH THE GLUTEN-FREE DIET

There are some common challenges with the GF diet:

• Low fiber
• High fat – often added for palatability of GF products
• More sugar and high fructose corn syrup – often added to increase the palatability of GF products
• Low in certain vitamins and minerals such as B vitamins, iron, calcium, magnesium and zinc
• Rarely fortified with iron, folic acid, or other B vitamins
• May cause constipation due to the lack of fiber and high sugar and starch content

A HEALTHY GLUTEN-FREE DIET

Make sure your child:

• Eats a variety of foods
• Eats lots of naturally GF foods – fruits, vegetables, beans and seeds (they are rich in iron, B vitamins, calcium, vitamin D and fiber)
• Chooses the more nutritious GF whole grains first, such as amaranth, buckwheat, quinoa, sorghum, teff, and millet
• Drink plenty of water and other fluids throughout the day

YOU ARE AN IMPORTANT PART OF YOUR CHILD’S CARE TEAM!

• As your child’s caregiver you are the most important part of your child’s care team. This can sometimes feel overwhelming, but take it one step at a time, or one meal at a time in the beginning.
• You are the advocate for your child’s needs at home, as well as to the outside world.
• Please know that you are not alone and you can call us with questions. Our phone lines are open 10 am EST-3 pm EST Monday-Friday.

Call us toll free at: 1(888)-4CELIAC or 1(888)-423-5422

CONGRATULATIONS! You have now completed step 1 of Getting Started: GF In 1, 2, 3.

Click the green arrow to the right to continue to step 2. 

Help us help kids! Donations are crucial to the quality of our programs. Donate today and keep us rocking! Thank you!

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

WHAT IS GLUTEN?

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.

Gluten containing grains:

• Wheat
• Barley
• Rye
• Oats: (oats do not contain gluten naturally, but are heavily exposed to gluten through crop rotation, processing and transporting with WBR grains)

GRAINS THAT ARE NOT SAFE

Wheat – all types

GRAINS THAT ARE NOT SAFE (continued)

OATS

Beware that most commercially available oats are heavily cross-contacted with gluten through crop rotation, processing, and transportation with WBR grains.

• Look for a GF label
  • Regular oats are heavily contaminated with gluten
• It is safest to use oats from a source that uses the “purity protocol”
  • Oats that have been grown, processed and transported away from wheat, barley and rye
• Note that some oats labeled GF have been mechanically sorted
  • Mechanically-sorted oats have been associated with gluten cross-contact
  • Check with the company how they determine the oats to be GF

OATS (continued)

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

QUESTIONABLE INGREDIENTS

• Modified food starch/starch - Usually from corn, if from wheat, it will be listed on the label. Rye and barley are not used as starches in food
• Flavorings - Natural/artificial flavorings may contain malt (rarely) or wheat; if from wheat, it will be listed on the label
• Brown rice syrup - May be derived from barley
• Seasonings - May contain wheat as a binder or filler, but would have to be declared on the label
• Caramel coloring - Usually from corn, if from wheat it will be declared on the label
• Dextrin - Usually from corn, if from wheat it will be declared on the label
• Maltodextrin - Usually made from corn, if from wheat it will be declared on the label (2)

Read more about confusing ingredients here

WHEAT-BASED INGREDIENTS THAT ARE GLUTEN-FREE

The below ingredients are safe even when derived from wheat, because gluten is removed in the processing:

• Distilled vinegar
• Distilled alcohols
• Citric acid
• Glucose syrup

Read more about ingredients here

GLUTEN-FREE GRAINS/FLOURS/STARCHES

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.

NATURALLY GF FOODS

Lots of foods are naturally gluten-free if unprocessed such as:

• Fruits
• Vegetables
• Meats
• Fish
• Milk
• Cheese
• Eggs
• Nuts
• Legumes (beans)
• Seeds
• Rice
• Potato

NUTRIENT PACKED GLUTEN-FREE GRAINS AND SEEDS

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):

Amaranth

• High protein, fiber, calcium and iron

Buckwheat

• High quality protein, B6, fiber, iron, niacin, thiamin, zinc

Flax Seed (ground)

• Omega-3 essential fatty acids, "good" fats
• Good source of both soluble and insoluble fibers

Quinoa

• High quality protein source
• High protein, calcium, magnesium, iron, zinc, B vitamins

Sorghum

• High fiber, B vitamins, iron, and protein

Teff

• High in nutrients and especially fiber, iron, calcium, B vitamins
• More nutritious than wheat, barley or corn (2)

ALWAYS READ THE LABEL!

Check anything you are going to eat or that could potentially be ingested:

• Foods
• Beverages
• Mints, candies, gum
• Vitamins and supplements
• Medications (check all including generics and substitutions)
• Dental products
• Personal care and skincare products (optional for older kids and adults) (2)

SKINCARE AND PERSONAL CARE PRODUCTS

• Gluten cannot penetrate through the skin. However, it is recommended that smaller children who may drink the bathwater use GF shampoos and soap
• Anything that has potential to go in the mouth should be checked for GF status
• Also, be mindful of lotion and sunscreen that goes on your child’s hands, as they might go into your child’s mouth, especially with children that suck their thumb and fingers

IMPORTANCE OF READING THE FOOD LABEL

• Reading the food label is one of the most important skills of staying healthy and GF
• Reading the label is the quickest way to find out if a product contains gluten or needs further investigation
• Read the ingredient listing carefully not to miss any ingredients
• ALWAYS read the label even if you have had the food before. Ingredients are constantly subject to change

WHAT IS CONSIDERED GLUTEN-FREE?

• The Food and Drug Administration (FDA) considers food to be GF when it contains less than 20 parts per million (ppm) (4)
• 20 ppm = .002%
• 20 ppm = 20 mg/kg
• A one-ounce slice of gluten-free bread would contain 0.57 mg of gluten (5)

How Much is 20 Parts Per Million?

WHAT IS THE THRESHOLD FOR GLUTEN CONSUMPTION?

• While there is no official threshold for gluten consumption, a study on adults found some damage to small intestines from as little as 10 mg of gluten per day (6)
• Children may be more sensitive. People have different sensitivities to gluten and should minimize gluten ingestion as much as possible
• How much is 10 mg?
  • It may be hard to see with the unaided eye

Infographic:  What Is the Threshold for Gluten Consumption?

GLUTEN-FREE FOOD LABELING

• The FDA requires foods that are labeled GF to contain less than 20 ppm of gluten. This was put into effect on September 4, 2013 with a compliance date of August 5, 2014
• NOTE: GF labeling is voluntary
• Food manufacturers are not required to indicate all sources of gluten on the label, or indicate GF status
• The FDA is not mandating the use of a specific GF label, so GF labeling can vary from one product to the next (4)

WHICH FOODS CAN BE LABELED GLUTEN-FREE?

• Foods that are naturally GF
• Foods that contain gluten grains (WBR), i.e. wheat starch, but has had the gluten removed to below 20 ppm
• Foods that do not contain more than 20 ppm of gluten

AND

• Any unavoidable gluten in the food due to cross-contact or migration of gluten from packaging material must be less than 20 ppm gluten (4)

CAN I TRUST THE LABEL?

• When 275 foods labeled GF were tested, 1.1% of them were found to contain more than 20 ppm gluten, so 98.9% tested GF
• Among non-GF labeled food (no gluten ingredients), 19.4% contained more than 20 ppm gluten and 10.2% contained more than 100 ppm gluten (7)

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

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.

Examples:

• The Gluten-Free Manufacturing Program, endorsed by the National Celiac Association requires that the final product must test at 5 ppm or less (8)
• Gluten Free Certification Organization – the final product must test at 10 ppm or less (9)
• Beware of false certifications

ALLERGENS LISTED ON THE LABEL

Food Allergen Labeling & Consumer Act (FALCPA) requires the top eight food allergens to be listed on the label, including:

• Milk
• Eggs
• Peanuts
• Tree nuts
• Fish
• Shellfish
• Wheat
• Soy

NOTE: Barley and rye are not included as allergens! FALCPA does not require any information regarding cross-contamination of foods. (10)

ALLERGENS LISTED ON THE LABEL cont.

FALCPA applies to:

• Foods, beverages and dietary supplements

Does not apply to:

• Foods regulated by the US Department of Agriculture (USDA)
• Alcohol beverages regulated by the alcohol and Tobacco Tax and Trade Bureau (TTB)
• Prescription and non-prescription drugs
• Pet food
• Cosmetics (10)

USDA LABELING

Which foods fall under the USDA labeling?

• Meats – beef, lamb, pork
• Poultry
• Eggs and egg products
• Processed foods containing more than 3% raw meat or 2% cooked meat or poultry

What are the USDA requirements?

• All ingredients are required to be listed on the label
• USDA products are not subject to FALCPA (the top eight allergens), however, they are encouraged to include allergen statements on the label
• USDA will follow the FDA’s 20 ppm guideline for any foods that claim to be gluten free (11, 12)

PROCESSING STATEMENTS and ALLERGEN ADVISORY STATEMENTS

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”

• Foods labeled GF must contain less than 20 ppm of gluten regardless of ingredients or cross-contact
• For foods that are NOT labeled GF – safety must be determined on individual basis
• The best way to find out how a product was processed is to contact the manufacturer directly and find out:
  • Is gluten used on the same lines, or in the same facility?
  • What is their procedure for cleaning between batches?
  • Do they have testing protocols for gluten?

Click here for more information on Allergen Advisory Statements.

HOW TO CONTACT MANUFACTURERS

• A contact number (usually an 800 number) should be included on the label
• Visit their website and review their FAQs
• The best way is to talk to customer service directly
• Ask to speak to a manager if your question is not answered
• When in doubt – do not risk it!

MEDICATIONS

• Gluten is sometimes used as a binder or filler in medications (although this is rare according to the FDA) (13)
• You should always check your child’s medications for gluten-free status
• Note that the rules for labeling of medications is different from that of foods.
• The FDA has issued draft guidance for how gluten should be labeled on medications.  However, it is not required, and you may see this statement:

“Contains no ingredient made from a gluten-containing grain (wheat, barley, or rye).” (13)

Read more here about FDA on gluten in medications

MEDICATIONS (continued)

Follow these steps to ensure your child’s medication is GF:

• Inform your physician and pharmacist of your child’s need for GF medication
• Check the insert with your medication, and ask for ingredient listings
• Call the pharmaceutical company and ask for gluten-free status for both prescription and over-the-counter medications
• If you are unable to get a gluten-free medication, check with a compounding pharmacy, which can make medications without gluten as a binder/filler

Information on gluten-free medications:  www.glutenfreedrugs.com

Find Compounding Pharmacists: www.a4pc.org

HOW TO READ LABELS

Follow these steps to determine if a product is GF:

1. See if the products states that it is GF (this may or may not be listed).  Please note that the FDA rules apply to products where “gluten-free” is spelled out.  If this is not written on the product and only the initials “GF” are written, they are not bound by the same regulations required when labeling “gluten-free”
2. Look for allergen statements, which are required to list WHEAT if present
3. Look at each ingredient carefully, particularly whether barley, rye and oat ingredients are listed 
4. Contact manufacturer to verify GF status if unsure

CONGRATULATIONS! You have now completed step 2 of Getting Started: GF In 1, 2, 3.

Click the green arrow to the right to continue to step 3.

Help us help kids! Donations are crucial to the quality of our programs. Donate today and keep us rocking! Thank you!

STEP 3: LIVING GLUTEN-FREE

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.

• Cross-contact and sharing a kitchen
• Holidays, celebrations and birthday parties
• Restaurants
• Travel
• Camp
• Daycare and preschool
• School
• College
• Psychosocial impacts
• Education and advocacy

CROSS-CONTACT AND SHARING A KITCHEN

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:

• Crumbs on tables and counters
• Crumbs in toasters
• Cooking utensils that are shared between foods and not cleaned properly
• Pots and pans that are not cleaned properly
• Cutting boards and knives that are shared between foods and not cleaned properly
• Spreads and condiments that are shared and contain crumbs

TIPS TO STAY GF IN THE KITCHEN

• Keep some kitchen tools "separate and dedicated" for example:
  • Colander for pasta
  • Toaster
  • Waffle maker
  • Sandwich maker
• Use well cleaned and non-porous pans, cutting boards, sifters, measuring cups and spoons. Stainless steel or aluminum are best as they are non-porous and easier to clean
• Have GF foods in their own cabinet/drawer
• If you have to store gluten-containing products in the same cabinet as GF foods, then always store GF foods above gluten-containing foods

TIPS TO STAY GF IN THE KITCHEN (continued)

• Label GF foods with colored stickers
• Use separate jars for spreads such as butter/peanut butter/jellies, etc.
• Do not allow double-dipping in condiments
• Do not bake gluten-containing items at the same time as GF items as there will be a great risk for cross-contact. Note that flour stays in the air for up to 48 hours and then settles on surfaces
• Also, be mindful of convection ovens. Convection oven fans circulate air which presents a potential for cross-contact, if you have previously baked with regular gluten-containing flour. Make sure fans are cleaned out or turn the convection feature off

FAMILY MEALS – SHOULD EVERYONE EAT GLUTEN-FREE?

Aim to make family meals GF:

• It is safer for your child if the whole meal is GF, as cross-contact can pose a risk when preparing GF foods at the same time as gluten-containing foods
• It is more inclusive for your child if they eat the same foods as everyone else in the family; it can feel alienating to always receive separate food from everyone else
• Cooking GF does not have to be difficult or expensive; focus on preparing naturally GF foods such as rice, beans, fruits, vegetables, meats, poultry, eggs
• You do not need “special” or expensive GF foods to make a healthy delicious GF meal

Check out our GF recipe finder

Check out Thrifty Gluten-Free - a recipe book with affordable healthy GF recipes

HOLIDAYS and CELEBRATIONS

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.

Here are some tips to make it easier at celebrations:

• Find out in advance what will be served and prepare your child ahead of time, pick out special treats and talk about what foods will be served
• Offer to help the host with cooking or providing the food
• Potlucks are great!
  • Bring an appetizer, entrée and dessert so you are sure there will be a complete meal for your child!
• Be the host! Make the whole party GF. Invite people to your home and let them try GF foods
  • GF can be delicious, you do not need "special" foods to eat GF

HOLIDAYS & CELEBRATIONS (continued)

Beware of cross-contact when eating away from home:

• Buffets may seem like a good idea, but there can be cross-contact between foods
• Make sure there are separate serving spatulas for each dish
• Make sure foods containing gluten are not next to GF foods
• Beware of double-dippers!
• Ask to be the first to serve your child from a buffet to decrease the risk of cross-contact
  • Teach your child to ask to be served first at events to prevent cross-contact

BIRTHDAY PARTIES

1. The key with birthday parties is to communicate early with the host and discuss your child’s needs. Ask what foods and drinks will be served and if any activities will involve food. Give suggestions on foods that are GF that everyone can eat.
2. Get foods that are similar to the ones that are served at the party and involve your child when picking them out. GF cupcakes are usually good to bring, and can be frozen and stored in advance for special occasions. Make sure the food is packed in a sealed, leak-proof container and labeled with your child’s name.
3. Educate and prepare your child ahead of the party. Practice explaining about the GF diet and reassure your child that it is ok to be different.
4. Walk in with your child to the party and talk to the host and explain again about your child’s needs, and make sure the foods you bring are put somewhere where they will not be in cross-contact with foods that contain gluten. Stay with your child if possible at the party.

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.

EATING AT RESTAURANTS

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.

Before going: research

• Look up restaurants and menus online, you can use NCA’s restaurant map and search feature here
• Ask friends and family in the GF community for recommendations and feedback
• Call the restaurant and talk about GF menu options and procedures for GF foods – off hours are best, as they may not have time to talk to you on a busy night

AT THE RESTAURANT

When you arrive:

• Alert the manager and all staff about your GF requirements
• Ask if a GF menu is available
• Always bring a gluten-free dining card that explains the diet to help educate staff

AT THE RESTAURANT (continued)

Ask about all foods and be particularly careful with:

• Sauces and thickeners
• Broths and soups
• Soy sauce
• Spice mixes and flour dusting
• Salad croutons and dressings
• Breaded or battered foods
• Fried foods (fried in non-dedicated fryolator)
• Bread served on top or side of food
• Vegetables cooked in pasta water

AT THE RESTAURANT (continued)

Restaurant guidelines for GF food preparation:

• Keep GF items separate to prevent cross-contact
• Ask for separate preparation and cooking station
• Use separate equipment, fryer, utensils, and tools
• Clean grill before cooking
• Place items on aluminum foil when toasting
• Do not steam, bathe or warm vegetables over pasta water 

Click here for Restaurant Food Preparation Guidelines

TRAVELING GF

You can definitely enjoy traveling while staying GF, it just requires some additional preparation:

• Research GF restaurants and stores ahead of time
• Carry GF snacks; never assume that GF foods will be available
• Have GF foods shipped
• Get a room with refrigerator/kitchenette
• Request a GF meal when flying
• Look into travel companies that serve GF customers
• Choose sites where GF is part of the local menu 

TRAVELING GF (continued)  

Good snacks to carry:

• GF fruit and nut bars
• Cheese sticks
• Whole fruits
• GF sandwiches
• GF crackers/rice cakes
• GF beef jerky
• Rolled up ham and cheese sticks

*Note that some foods may not be allowed to be brought to certain destinations, so make sure to check before traveling

GLUTEN-FREE CAMPS

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! 

GLUTEN-FREE AT DAYCARE

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.

Ask about:

• Meals and snacks at school
• Is sharing of food allowed?
• How will your child’s food be stored?
• Do they have procedures for handling your child’s food while serving?
• Cleaning practices
• Seating arrangements. Do they have separate tables for those with food allergies and sensitivities?
• Celebrations – is food allowed? If so, can they notify you ahead of time so you can bring in a GF treat for your child
• Art classes and supplies – do they contain gluten, such as papier mâché, and play dough?
• Sensory tables – often contain grains

Read an article about communicating with caregivers

GLUTEN-FREE AT SCHOOL

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:

• Get a letter from your child’s doctor for the school with their recommendation of a medically prescribed gluten-free diet.
• Be prepared to talk to your child’s school nurse, teacher, art teacher, and foodservice department, ask about:
  • Meals and snacks at school
  • Is sharing of food allowed?
  • Celebrations at school – is food allowed?
  • Cleaning practices
  • Do they have separate tables for those with food allergies and sensitivities?
  • Art classes and supplies – do they contain gluten, do they contain gluten, such as papier mâché, and play dough?

Infografic: Steps to a 504 plan

MEALS AT SCHOOL

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)

Here are the laws and regulations protecting kids with CD at public and charter schools:

• The Rehabilitation Act of 1973
• The Americans with Disabilities Act
• The Individuals with Disabilities Education Act
• USDA Regulatory Requirements

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

MEALS AT SCHOOL (continued)

Private schools

• Private schools are not required to provide GF meals unless meals are included in the tuition fee or you are required to purchase a meal plan
• Children with CD at private schools are only protected under The Americans with Disabilities Act (ADA)

For more info check out FAQ about school lunches

GF AT COLLEGE

People with CD are covered under the Americans with Disabilities Act (ADA), this means colleges have to accommodate students on a GF diet.

Staying GF at college can sometimes be a challenge, it is important to:

• Research schools ahead of time
• Talk to the campus dietitian and the foodservice director
  • Ask about GF accommodations, do they have a GF menu?
  • Do GF foods have to be ordered ahead of time?
  • Are there choices and variety each day?
  • What about special occasions where meals are consumed outside the dining hall?
  • Will you have access to a food prep area in the dorm?

GF AT COLLEGE (continued)

• Have a medical statement from your doctor stating the necessity for a GF diet
• If possible, talk to other students at the school who also have to eat GF, hearing first-hand experiences can be a very valuable tool
• Visit and inspect the foodservice area:
  • How are the foods stored? Is there risk of cross-contact?
  • Are the foods prepared away from gluten-containing foods?
  • Are the foods served in an area away from gluten-containing foods?

Check out our College Survival Guide

PSYCHOSOCIAL IMPACTS OF CELIAC DISEASE

CD is usually associated with physical symptoms, however there are many psychosocial impacts of CD.

Here are a few:

• Anxiety
• Depression
• Isolation
• Fear of getting sick
• Embarrassment
• Being considered “picky”

CD and lower quality of life

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

CHEATING ON THE GF DIET

• It is important to tell your child that cheating on the diet will make them very sick and it is essential that they stay GF at all times
• Remember that every time they cheat they put themselves at risk for health consequences associated with CD
• Many times when children cheat on the diet it is due to embarrassment or not knowing how to deal with the situation
• Get your child involved with their health and diet, teach them self-advocacy
• Talk about embarrassment around the diet and practice different situations ahead of time
• Teach them that it is ok to be different
• Younger children are usually easier with compliance; older kids might have a harder time adjusting and following the diet

EDUCATION AND SELF-ADVOCACY

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.

• Keep information age-appropriate
• Explain to your child in simple terms what CD is and what happens when they eat gluten
• To be as healthy as possible it is important to stay away from gluten, which will help their body grow strong
• Read labels with your child, explain what the ingredients mean (this is sometimes a challenge!)
• Let your child shop with you for food and help you read the label

EDUCATION and SELF-ADVOCACY (continued)

• Cook and bake with your child to get them involved with food and ingredients
• Tell your child to not accept any foods without it being confirmed that it is gluten-free
• Explain that it is ok to ask questions and that their health is important;, it is better to question than to get sick
• It’s ok to be different! We all know that kids want to fit in, especially older kids and teens. Be sensitive to their needs, but at the same time reassure them that it is ok to be different

MISCONCEPTIONS OF CELIAC DISEASE and GLUTEN-FREE DIET

• It is trendy
• It is a fad diet
• It is an allergy
• It is a childhood disease that you grow out of
• A little bit of gluten is ok
• People with celiac disease are just fussy with food

POSITIVES OF HAVING CELIAC DISEASE

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:

• We are lucky to be diagnosed - we have an answer
  • An estimated 83% of people with celiac disease are still undiagnosed
• Less artificial ingredients and GMO’s
• We get really good at nutrition and reading labels
• We get to practice cooking and baking
• We get to pick the restaurants when we go out!

CONGRATULATIONS! You have now completed all 3 steps of Getting Started: GF In 1, 2, 3.

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

Help us help kids! Donations are crucial to the quality of our programs. Donate today and keep us rocking! Thank you!

REFERENCES

1. Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, Elitsur Y, Green PH, Guandalini S, Hill ID, Pietzak M, Ventura A, Thorpe M, Kryszak D, Fornaroli F, Wasserman SS, Murray JA, Horvath K. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med. 2003 Feb 10;163(3):286-92.
2. New England Celiac Organization. Gluten-Free, Off To A Fresh Start. Presentation. October 2016.
3. UChicago Medicine. Celiac Answer Bank. Celiac Disease Center Website. http://www.cureceliacdisease.org/faq/what-percentage-of-those-with-the-genes-will-develop-celiac-disease/ . Published August 2012. Updated 2018. Accessed December 10, 2018.
4. US Food and Drug Administration (FDA). Questions & Answers: Gluten-Free Food Labeling Final Rule. FDA Website. https://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/Allergens/ucm362880.htm . Updated May 2, 2016. Accessed October 22, 2017.
5. Thompson T. How Much Gluten Is 20 Parts Per Million? Gluten Free Dietitian website. https://www.glutenfreedietitian.com/how-much-gluten-is-20-parts-per-million/. Published February 6, 2008. Updated 2017. Accessed November 11, 2017.
6. Catassi C, Fabiani E, Iacono G, D'Agate C, Francavilla R, Biagi F, Volta U, Accomando S, Picarelli A, De Vitis I, Pianelli G, Gesuita R, Carle F, Mandolesi A, Bearzi I, Fasano A. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. Am J Clin Nutr. 2007;85(1):160-6.
7. Sharma GM, Pereira M, Williams KM. Gluten detection in foods available in the United States - a market survey. Food Chem. 2015;15(169):120-126.

GETTING STARTED: GF IN 1, 2, 3

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!

This course contains three steps:

• Step 1: Understanding celiac disease
• Step 2: The gluten-free diet
• Step 3: Living gluten-free

Use the green arrows to move back and forth between the slides.

Let's get going!

STEP 1: UNDERSTANDING CELIAC DISEASE

WHAT IS CELIAC DISEASE?

• Celiac disease (CD) is a genetic condition where the body reacts to foods we ingest that contain gluten
• CD is an autoimmune disease – Autoimmune means that the body’s immune system attacks itself and in the case of CD, the immune system attacks the villi in the small intestine when gluten is ingested
• Villi are very small fingerlike projections that significantly increase the surface area of the small intestine. The function of the villi is to absorb nutrients from food and into the blood, so that the body can use them
• When gluten is ingested the immune system attacks the villi which gets blunted, causing the surface area and ability to absorb nutrients to severly decrease 
• There is no medication or cure available to treat CD. The only treatment is a strict gluten-free (GF) diet

OTHER NAMES FOR CELIAC DISEASE

• Celiac sprue
• Gluten-sensitive enteropathy
• Coeliac (pronounced celiac and commonly used in UK/Australia)

YOU ARE NOT ALONE

Celiac disease and non-celiac gluten sensitivity (NCGS) are common.

• About 21 million people in the United States have either CD or NCGS
• About 1 percent of the population has CD = 3 million people and about 6 percent have NCGS = 18 million people

CELIAC DISEASE STATISTICS

• 1 in 100 in the general population
• 1 in 22 with a first degree relative with CD (mom, dad, sibling)
• 1 in 39 with a second degree relative (aunt, cousin etc.) (1)

OTHER GLUTEN-RELATED CONDITIONS

DERMATITIS HERPETIFORMIS (DH)

• DH is a different manifestation of celiac disease where the immune system attacks the skin creating an itchy blistering rash when gluten is ingested
• It may be present with or without damage to the small intestine
• It is diagnosed via skin biopsy by a dermatologist
• The treatment is a strict gluten-free diet and may also include medications to manage symptoms

Gluten-Related Conditions Explained

OTHER GLUTEN-RELATED CONDITIONS (continued)

 NON-CELIAC GLUTEN SENSITIVITY (NCGS)

• NCGS is an intolerance to gluten ingestion that may show some immune response, but little to no villi damage
• Symptoms may be similar to CD
• It affects about six percent of the population
• CD and wheat allergy must be ruled out before a diagnosis of NCGS is made
• The treatment is a GF diet (2)

Gluten-Related Conditions Explained

OTHER GLUTEN-RELATED CONDITIONS (continued)

 WHEAT ALLERGY

• This is an allergic immune reaction to wheat ingestion, and involves a different branch of the immune system than CD
• It may include a reaction in the skin, mouth, lungs, and/or GI system
• Wheat allergy should be diagnosed by an allergist
• The treatment is a wheat-free diet and may include medications to manage symptoms

Gluten-Related Conditions Explained

SYMPTOMS OF CELIAC DISEASE

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:

NON-GASTROINTESTINAL

• Fatigue
• Depression
• Joint pain
• Muscle aches, cramps
• Skeletal pain
• Peripheral neuropathies
• Skin dryness
• Menstrual irregularities
• Dental abnormalities
• Brain Fog (2)

HOW IS CELIAC DISEASE DIAGNOSED?

Celiac disease is diagnosed by blood tests and small intestinal endoscopy (biopsy).

BLOOD TESTS

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:

• EMA (anti-endomysial antibody): 95% specificity/sensitivity
• tTG IgA (anti-tissue transglutaminase antibody): 95% specificity/sensitivity
• Total IgA (if deficient may need alternate testing)
• Anti-DGP (deamidated gliadin peptide): used for patients with total IgA deficiency

Infographic: Celiac Specific Tests

HOW IS CELIAC DISEASE DIAGNOSED? (continued)

ENDOSCOPY

The next step is an endoscopy of the small intestine, also called a biopsy:

• An endoscopy is considered the “gold standard” for diagnosing CD
• During an endoscopy, an endoscope (small tube with a camera at the end) is passed down the throat, stomach and into the small intestine
• It allows the doctor to check the digestive tract for inflammation and damaged villi. Tiny pieces of the surface of the small intestine are taken out for examination (biopsy)

COMPLICATIONS

Certain complications and conditions may be associated with CD.

• Those with CD are at risk for other autoimmune diseases
  • Hashimoto’s thyroiditis
  • Type 1 diabetes
  • Sjogren’s syndrome
  • Rheumatoid arthritis
  • Addison’s disease
  • Autoimmune liver disease
  • Lupus
  • Vitiligo (loss of skin pigment)
• Refractory CD – is a rare condition where the intestine does not heal in response to the GF diet
• Malignancies (cancers)
  • Risks normalize to the general population’s risk within 5 years on a strict GF diet (2)

TREATMENT

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.

• Some people may need treatment for vitamin and/or mineral deficiencies
• Those with anemia may need iron, B12, and/or folic acid supplementation under supervision (2)

See a Registered Dietitian Nutritionist (RDN)

• A registered dietitian nutritionist or RDN is a health professional specializing in food and nutrition.
• It is important to find a dietitian that is familiar with CD and the GF diet. A dietitian specializing in celiac disease can help you or your child get started on the GF diet, and also help you with any problems and adherence to the GF diet
• A dietitian can also help you achieve a healthier balanced diet and address any existing nutrient deficiencies

How to find a dietitian >

FOLLOW-UP

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:

• Celiac-specific antibodies to see that everything is going well, and if the diet is working (a tTG and/or DGP tests will help indicate how well the diet is working)
• Your child’s growth -weight, height
• Total blood count
• Vitamin and mineral deficiencies such as iron, zinc, B6, B12, Folate, vitamin D
• Thyroid and Liver functioning screening (2)

HEALING TIME

How long will it take to heal and recover once a GF diet is started?

• It takes time for the small intestine to heal. Healing begins within days, but usually takes weeks to months to years to fully heal. The cells in the intestinal wall regenerate every 72 hours if they are not exposed to gluten
• Healing time is individual
• There may be a secondary condition causing delay in healing – follow-up with your physician (2)

BARRIERS TO HEALING

7 to 30 percent of patients do not improve on a GF diet, why?

• Most often due to dietary indiscretion or inadvertent exposure to gluten
• Lactose intolerance, fructose malabsorption or other carbohydrate intolerances
• Poor absorption of Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols (FODMAPs)
• Small intestinal bacterial overgrowth (SIBO)
• Other food allergies/intolerance (soy, corn, etc.)
• Pancreatic enzyme deficiencies
• Microscopic colitis
• If all ruled out, doctor may consider refractory CD, which may require steroids (this condition is rare)
• There may be an other secondary condition causing delay in healing – follow-up with your physician (2)

CHALLENGES WITH THE GLUTEN-FREE DIET

There are some common challenges with the GF diet:

• Low fiber
• High fat – often added for palatability of GF products
• More sugar and high fructose corn syrup – often added to increase the palatability of GF products
• Low in certain vitamins and minerals such as B vitamins, iron, calcium, magnesium and zinc
• Rarely fortified with iron, folic acid, or other B vitamins
• May cause constipation due to the lack of fiber and high sugar and starch content

A HEALTHY GLUTEN-FREE DIET

Make sure your child:

• Eats a variety of foods
• Eats lots of naturally GF foods – fruits, vegetables, beans and seeds (they are rich in iron, B vitamins, calcium, vitamin D and fiber)
• Chooses the more nutritious GF whole grains first, such as amaranth, buckwheat, quinoa, sorghum, teff, and millet
• Drink plenty of water and other fluids throughout the day

YOU ARE AN IMPORTANT PART OF YOUR CHILD’S CARE TEAM!

• As your child’s caregiver you are the most important part of your child’s care team. This can sometimes feel overwhelming, but take it one step at a time, or one meal at a time in the beginning.
• You are the advocate for your child’s needs at home, as well as to the outside world.
• Please know that you are not alone and you can call us with questions. Our phone lines are open 10 am EST-3 pm EST Monday-Friday.

Call us toll free at: 1(888)-4CELIAC or 1(888)-423-5422

CONGRATULATIONS! You have now completed step 1 of Getting Started: GF In 1, 2, 3.

Click the green arrow to the right to continue to step 2. 

Help us help kids! Donations are crucial to the quality of our programs. Donate today and keep us rocking! Thank you!

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

WHAT IS GLUTEN?

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.

Gluten containing grains:

• Wheat
• Barley
• Rye
• Oats: (oats do not contain gluten naturally, but are heavily exposed to gluten through crop rotation, processing and transporting with WBR grains)

GRAINS THAT ARE NOT SAFE

Wheat – all types

GRAINS THAT ARE NOT SAFE (continued)

OATS

Beware that most commercially available oats are heavily cross-contacted with gluten through crop rotation, processing, and transportation with WBR grains.

• Look for a GF label
  • Regular oats are heavily contaminated with gluten
• It is safest to use oats from a source that uses the “purity protocol”
  • Oats that have been grown, processed and transported away from wheat, barley and rye
• Note that some oats labeled GF have been mechanically sorted
  • Mechanically-sorted oats have been associated with gluten cross-contact
  • Check with the company how they determine the oats to be GF

OATS (continued)

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

QUESTIONABLE INGREDIENTS

• Modified food starch/starch - Usually from corn, if from wheat, it will be listed on the label. Rye and barley are not used as starches in food
• Flavorings - Natural/artificial flavorings may contain malt (rarely) or wheat; if from wheat, it will be listed on the label
• Brown rice syrup - May be derived from barley
• Seasonings - May contain wheat as a binder or filler, but would have to be declared on the label
• Caramel coloring - Usually from corn, if from wheat it will be declared on the label
• Dextrin - Usually from corn, if from wheat it will be declared on the label
• Maltodextrin - Usually made from corn, if from wheat it will be declared on the label (2)

Read more about confusing ingredients here

WHEAT-BASED INGREDIENTS THAT ARE GLUTEN-FREE

The below ingredients are safe even when derived from wheat, because gluten is removed in the processing:

• Distilled vinegar
• Distilled alcohols
• Citric acid
• Glucose syrup

Read more about ingredients here

GLUTEN-FREE GRAINS/FLOURS/STARCHES

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.

NATURALLY GF FOODS

Lots of foods are naturally gluten-free if unprocessed such as:

• Fruits
• Vegetables
• Meats
• Fish
• Milk
• Cheese
• Eggs
• Nuts
• Legumes (beans)
• Seeds
• Rice
• Potato

NUTRIENT PACKED GLUTEN-FREE GRAINS AND SEEDS

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):

Amaranth

• High protein, fiber, calcium and iron

Buckwheat

• High quality protein, B6, fiber, iron, niacin, thiamin, zinc

Flax Seed (ground)

• Omega-3 essential fatty acids, "good" fats
• Good source of both soluble and insoluble fibers

Quinoa

• High quality protein source
• High protein, calcium, magnesium, iron, zinc, B vitamins

Sorghum

• High fiber, B vitamins, iron, and protein

Teff

• High in nutrients and especially fiber, iron, calcium, B vitamins
• More nutritious than wheat, barley or corn (2)

ALWAYS READ THE LABEL!

Check anything you are going to eat or that could potentially be ingested:

• Foods
• Beverages
• Mints, candies, gum
• Vitamins and supplements
• Medications (check all including generics and substitutions)
• Dental products
• Personal care and skincare products (optional for older kids and adults) (2)

SKINCARE AND PERSONAL CARE PRODUCTS

• Gluten cannot penetrate through the skin. However, it is recommended that smaller children who may drink the bathwater use GF shampoos and soap
• Anything that has potential to go in the mouth should be checked for GF status
• Also, be mindful of lotion and sunscreen that goes on your child’s hands, as they might go into your child’s mouth, especially with children that suck their thumb and fingers

IMPORTANCE OF READING THE FOOD LABEL

• Reading the food label is one of the most important skills of staying healthy and GF
• Reading the label is the quickest way to find out if a product contains gluten or needs further investigation
• Read the ingredient listing carefully not to miss any ingredients
• ALWAYS read the label even if you have had the food before. Ingredients are constantly subject to change

WHAT IS CONSIDERED GLUTEN-FREE?

• The Food and Drug Administration (FDA) considers food to be GF when it contains less than 20 parts per million (ppm) (4)
• 20 ppm = .002%
• 20 ppm = 20 mg/kg
• A one-ounce slice of gluten-free bread would contain 0.57 mg of gluten (5)

How Much is 20 Parts Per Million?

WHAT IS THE THRESHOLD FOR GLUTEN CONSUMPTION?

• While there is no official threshold for gluten consumption, a study on adults found some damage to small intestines from as little as 10 mg of gluten per day (6)
• Children may be more sensitive. People have different sensitivities to gluten and should minimize gluten ingestion as much as possible
• How much is 10 mg?
  • It may be hard to see with the unaided eye

Infographic:  What Is the Threshold for Gluten Consumption?

GLUTEN-FREE FOOD LABELING

• The FDA requires foods that are labeled GF to contain less than 20 ppm of gluten. This was put into effect on September 4, 2013 with a compliance date of August 5, 2014
• NOTE: GF labeling is voluntary
• Food manufacturers are not required to indicate all sources of gluten on the label, or indicate GF status
• The FDA is not mandating the use of a specific GF label, so GF labeling can vary from one product to the next (4)

WHICH FOODS CAN BE LABELED GLUTEN-FREE?

• Foods that are naturally GF
• Foods that contain gluten grains (WBR), i.e. wheat starch, but has had the gluten removed to below 20 ppm
• Foods that do not contain more than 20 ppm of gluten

AND

• Any unavoidable gluten in the food due to cross-contact or migration of gluten from packaging material must be less than 20 ppm gluten (4)

CAN I TRUST THE LABEL?

• When 275 foods labeled GF were tested, 1.1% of them were found to contain more than 20 ppm gluten, so 98.9% tested GF
• Among non-GF labeled food (no gluten ingredients), 19.4% contained more than 20 ppm gluten and 10.2% contained more than 100 ppm gluten (7)

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

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.

Examples:

• The Gluten-Free Manufacturing Program, endorsed by the National Celiac Association requires that the final product must test at 5 ppm or less (8)
• Gluten Free Certification Organization – the final product must test at 10 ppm or less (9)
• Beware of false certifications

ALLERGENS LISTED ON THE LABEL

Food Allergen Labeling & Consumer Act (FALCPA) requires the top eight food allergens to be listed on the label, including:

• Milk
• Eggs
• Peanuts
• Tree nuts
• Fish
• Shellfish
• Wheat
• Soy

NOTE: Barley and rye are not included as allergens! FALCPA does not require any information regarding cross-contamination of foods. (10)

ALLERGENS LISTED ON THE LABEL cont.

FALCPA applies to:

• Foods, beverages and dietary supplements

Does not apply to:

• Foods regulated by the US Department of Agriculture (USDA)
• Alcohol beverages regulated by the alcohol and Tobacco Tax and Trade Bureau (TTB)
• Prescription and non-prescription drugs
• Pet food
• Cosmetics (10)

USDA LABELING

Which foods fall under the USDA labeling?

• Meats – beef, lamb, pork
• Poultry
• Eggs and egg products
• Processed foods containing more than 3% raw meat or 2% cooked meat or poultry

What are the USDA requirements?

• All ingredients are required to be listed on the label
• USDA products are not subject to FALCPA (the top eight allergens), however, they are encouraged to include allergen statements on the label
• USDA will follow the FDA’s 20 ppm guideline for any foods that claim to be gluten free (11, 12)

PROCESSING STATEMENTS and ALLERGEN ADVISORY STATEMENTS

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”

• Foods labeled GF must contain less than 20 ppm of gluten regardless of ingredients or cross-contact
• For foods that are NOT labeled GF – safety must be determined on individual basis
• The best way to find out how a product was processed is to contact the manufacturer directly and find out:
  • Is gluten used on the same lines, or in the same facility?
  • What is their procedure for cleaning between batches?
  • Do they have testing protocols for gluten?

Click here for more information on Allergen Advisory Statements.

HOW TO CONTACT MANUFACTURERS

• A contact number (usually an 800 number) should be included on the label
• Visit their website and review their FAQs
• The best way is to talk to customer service directly
• Ask to speak to a manager if your question is not answered
• When in doubt – do not risk it!

MEDICATIONS

• Gluten is sometimes used as a binder or filler in medications (although this is rare according to the FDA) (13)
• You should always check your child’s medications for gluten-free status
• Note that the rules for labeling of medications is different from that of foods.
• The FDA has issued draft guidance for how gluten should be labeled on medications.  However, it is not required, and you may see this statement:

“Contains no ingredient made from a gluten-containing grain (wheat, barley, or rye).” (13)

Read more here about FDA on gluten in medications

MEDICATIONS (continued)

Follow these steps to ensure your child’s medication is GF:

• Inform your physician and pharmacist of your child’s need for GF medication
• Check the insert with your medication, and ask for ingredient listings
• Call the pharmaceutical company and ask for gluten-free status for both prescription and over-the-counter medications
• If you are unable to get a gluten-free medication, check with a compounding pharmacy, which can make medications without gluten as a binder/filler

Information on gluten-free medications:  www.glutenfreedrugs.com

Find Compounding Pharmacists: www.a4pc.org

HOW TO READ LABELS

Follow these steps to determine if a product is GF:

1. See if the products states that it is GF (this may or may not be listed).  Please note that the FDA rules apply to products where “gluten-free” is spelled out.  If this is not written on the product and only the initials “GF” are written, they are not bound by the same regulations required when labeling “gluten-free”
2. Look for allergen statements, which are required to list WHEAT if present
3. Look at each ingredient carefully, particularly whether barley, rye and oat ingredients are listed 
4. Contact manufacturer to verify GF status if unsure

CONGRATULATIONS! You have now completed step 2 of Getting Started: GF In 1, 2, 3.

Click the green arrow to the right to continue to step 3.

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STEP 3: LIVING GLUTEN-FREE

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.

• Cross-contact and sharing a kitchen
• Holidays, celebrations and birthday parties
• Restaurants
• Travel
• Camp
• Daycare and preschool
• School
• College
• Psychosocial impacts
• Education and advocacy

CROSS-CONTACT AND SHARING A KITCHEN

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:

• Crumbs on tables and counters
• Crumbs in toasters
• Cooking utensils that are shared between foods and not cleaned properly
• Pots and pans that are not cleaned properly
• Cutting boards and knives that are shared between foods and not cleaned properly
• Spreads and condiments that are shared and contain crumbs

TIPS TO STAY GF IN THE KITCHEN

• Keep some kitchen tools "separate and dedicated" for example:
  • Colander for pasta
  • Toaster
  • Waffle maker
  • Sandwich maker
• Use well cleaned and non-porous pans, cutting boards, sifters, measuring cups and spoons. Stainless steel or aluminum are best as they are non-porous and easier to clean
• Have GF foods in their own cabinet/drawer
• If you have to store gluten-containing products in the same cabinet as GF foods, then always store GF foods above gluten-containing foods

TIPS TO STAY GF IN THE KITCHEN (continued)

• Label GF foods with colored stickers
• Use separate jars for spreads such as butter/peanut butter/jellies, etc.
• Do not allow double-dipping in condiments
• Do not bake gluten-containing items at the same time as GF items as there will be a great risk for cross-contact. Note that flour stays in the air for up to 48 hours and then settles on surfaces
• Also, be mindful of convection ovens. Convection oven fans circulate air which presents a potential for cross-contact, if you have previously baked with regular gluten-containing flour. Make sure fans are cleaned out or turn the convection feature off

FAMILY MEALS – SHOULD EVERYONE EAT GLUTEN-FREE?

Aim to make family meals GF:

• It is safer for your child if the whole meal is GF, as cross-contact can pose a risk when preparing GF foods at the same time as gluten-containing foods
• It is more inclusive for your child if they eat the same foods as everyone else in the family; it can feel alienating to always receive separate food from everyone else
• Cooking GF does not have to be difficult or expensive; focus on preparing naturally GF foods such as rice, beans, fruits, vegetables, meats, poultry, eggs
• You do not need “special” or expensive GF foods to make a healthy delicious GF meal

Check out our GF recipe finder

Check out Thrifty Gluten-Free - a recipe book with affordable healthy GF recipes

HOLIDAYS and CELEBRATIONS

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.

Here are some tips to make it easier at celebrations:

• Find out in advance what will be served and prepare your child ahead of time, pick out special treats and talk about what foods will be served
• Offer to help the host with cooking or providing the food
• Potlucks are great!
  • Bring an appetizer, entrée and dessert so you are sure there will be a complete meal for your child!
• Be the host! Make the whole party GF. Invite people to your home and let them try GF foods
  • GF can be delicious, you do not need "special" foods to eat GF

HOLIDAYS & CELEBRATIONS (continued)

Beware of cross-contact when eating away from home:

• Buffets may seem like a good idea, but there can be cross-contact between foods
• Make sure there are separate serving spatulas for each dish
• Make sure foods containing gluten are not next to GF foods
• Beware of double-dippers!
• Ask to be the first to serve your child from a buffet to decrease the risk of cross-contact
  • Teach your child to ask to be served first at events to prevent cross-contact

BIRTHDAY PARTIES

1. The key with birthday parties is to communicate early with the host and discuss your child’s needs. Ask what foods and drinks will be served and if any activities will involve food. Give suggestions on foods that are GF that everyone can eat.
2. Get foods that are similar to the ones that are served at the party and involve your child when picking them out. GF cupcakes are usually good to bring, and can be frozen and stored in advance for special occasions. Make sure the food is packed in a sealed, leak-proof container and labeled with your child’s name.
3. Educate and prepare your child ahead of the party. Practice explaining about the GF diet and reassure your child that it is ok to be different.
4. Walk in with your child to the party and talk to the host and explain again about your child’s needs, and make sure the foods you bring are put somewhere where they will not be in cross-contact with foods that contain gluten. Stay with your child if possible at the party.

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.

EATING AT RESTAURANTS

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.

Before going: research

• Look up restaurants and menus online, you can use NCA’s restaurant map and search feature here
• Ask friends and family in the GF community for recommendations and feedback
• Call the restaurant and talk about GF menu options and procedures for GF foods – off hours are best, as they may not have time to talk to you on a busy night

AT THE RESTAURANT

When you arrive:

• Alert the manager and all staff about your GF requirements
• Ask if a GF menu is available
• Always bring a gluten-free dining card that explains the diet to help educate staff

AT THE RESTAURANT (continued)

Ask about all foods and be particularly careful with:

• Sauces and thickeners
• Broths and soups
• Soy sauce
• Spice mixes and flour dusting
• Salad croutons and dressings
• Breaded or battered foods
• Fried foods (fried in non-dedicated fryolator)
• Bread served on top or side of food
• Vegetables cooked in pasta water

AT THE RESTAURANT (continued)

Restaurant guidelines for GF food preparation:

• Keep GF items separate to prevent cross-contact
• Ask for separate preparation and cooking station
• Use separate equipment, fryer, utensils, and tools
• Clean grill before cooking
• Place items on aluminum foil when toasting
• Do not steam, bathe or warm vegetables over pasta water 

Click here for Restaurant Food Preparation Guidelines

TRAVELING GF

You can definitely enjoy traveling while staying GF, it just requires some additional preparation:

• Research GF restaurants and stores ahead of time
• Carry GF snacks; never assume that GF foods will be available
• Have GF foods shipped
• Get a room with refrigerator/kitchenette
• Request a GF meal when flying
• Look into travel companies that serve GF customers
• Choose sites where GF is part of the local menu 

TRAVELING GF (continued)  

Good snacks to carry:

• GF fruit and nut bars
• Cheese sticks
• Whole fruits
• GF sandwiches
• GF crackers/rice cakes
• GF beef jerky
• Rolled up ham and cheese sticks

*Note that some foods may not be allowed to be brought to certain destinations, so make sure to check before traveling

GLUTEN-FREE CAMPS

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! 

GLUTEN-FREE AT DAYCARE

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.

Ask about:

• Meals and snacks at school
• Is sharing of food allowed?
• How will your child’s food be stored?
• Do they have procedures for handling your child’s food while serving?
• Cleaning practices
• Seating arrangements. Do they have separate tables for those with food allergies and sensitivities?
• Celebrations – is food allowed? If so, can they notify you ahead of time so you can bring in a GF treat for your child
• Art classes and supplies – do they contain gluten, such as papier mâché, and play dough?
• Sensory tables – often contain grains

Read an article about communicating with caregivers

GLUTEN-FREE AT SCHOOL

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:

• Get a letter from your child’s doctor for the school with their recommendation of a medically prescribed gluten-free diet.
• Be prepared to talk to your child’s school nurse, teacher, art teacher, and foodservice department, ask about:
  • Meals and snacks at school
  • Is sharing of food allowed?
  • Celebrations at school – is food allowed?
  • Cleaning practices
  • Do they have separate tables for those with food allergies and sensitivities?
  • Art classes and supplies – do they contain gluten, do they contain gluten, such as papier mâché, and play dough?

Infografic: Steps to a 504 plan

MEALS AT SCHOOL

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)

Here are the laws and regulations protecting kids with CD at public and charter schools:

• The Rehabilitation Act of 1973
• The Americans with Disabilities Act
• The Individuals with Disabilities Education Act
• USDA Regulatory Requirements

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

MEALS AT SCHOOL (continued)

Private schools

• Private schools are not required to provide GF meals unless meals are included in the tuition fee or you are required to purchase a meal plan
• Children with CD at private schools are only protected under The Americans with Disabilities Act (ADA)

For more info check out FAQ about school lunches

GF AT COLLEGE

People with CD are covered under the Americans with Disabilities Act (ADA), this means colleges have to accommodate students on a GF diet.

Staying GF at college can sometimes be a challenge, it is important to:

• Research schools ahead of time
• Talk to the campus dietitian and the foodservice director
  • Ask about GF accommodations, do they have a GF menu?
  • Do GF foods have to be ordered ahead of time?
  • Are there choices and variety each day?
  • What about special occasions where meals are consumed outside the dining hall?
  • Will you have access to a food prep area in the dorm?

GF AT COLLEGE (continued)

• Have a medical statement from your doctor stating the necessity for a GF diet
• If possible, talk to other students at the school who also have to eat GF, hearing first-hand experiences can be a very valuable tool
• Visit and inspect the foodservice area:
  • How are the foods stored? Is there risk of cross-contact?
  • Are the foods prepared away from gluten-containing foods?
  • Are the foods served in an area away from gluten-containing foods?

Check out our College Survival Guide

PSYCHOSOCIAL IMPACTS OF CELIAC DISEASE

CD is usually associated with physical symptoms, however there are many psychosocial impacts of CD.

Here are a few:

• Anxiety
• Depression
• Isolation
• Fear of getting sick
• Embarrassment
• Being considered “picky”

CD and lower quality of life

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

CHEATING ON THE GF DIET

• It is important to tell your child that cheating on the diet will make them very sick and it is essential that they stay GF at all times
• Remember that every time they cheat they put themselves at risk for health consequences associated with CD
• Many times when children cheat on the diet it is due to embarrassment or not knowing how to deal with the situation
• Get your child involved with their health and diet, teach them self-advocacy
• Talk about embarrassment around the diet and practice different situations ahead of time
• Teach them that it is ok to be different
• Younger children are usually easier with compliance; older kids might have a harder time adjusting and following the diet

EDUCATION AND SELF-ADVOCACY

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.

• Keep information age-appropriate
• Explain to your child in simple terms what CD is and what happens when they eat gluten
• To be as healthy as possible it is important to stay away from gluten, which will help their body grow strong
• Read labels with your child, explain what the ingredients mean (this is sometimes a challenge!)
• Let your child shop with you for food and help you read the label

EDUCATION and SELF-ADVOCACY (continued)

• Cook and bake with your child to get them involved with food and ingredients
• Tell your child to not accept any foods without it being confirmed that it is gluten-free
• Explain that it is ok to ask questions and that their health is important;, it is better to question than to get sick
• It’s ok to be different! We all know that kids want to fit in, especially older kids and teens. Be sensitive to their needs, but at the same time reassure them that it is ok to be different

MISCONCEPTIONS OF CELIAC DISEASE and GLUTEN-FREE DIET

• It is trendy
• It is a fad diet
• It is an allergy
• It is a childhood disease that you grow out of
• A little bit of gluten is ok
• People with celiac disease are just fussy with food

POSITIVES OF HAVING CELIAC DISEASE

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:

• We are lucky to be diagnosed - we have an answer
  • An estimated 83% of people with celiac disease are still undiagnosed
• Less artificial ingredients and GMO’s
• We get really good at nutrition and reading labels
• We get to practice cooking and baking
• We get to pick the restaurants when we go out!

CONGRATULATIONS! You have now completed all 3 steps of Getting Started: GF In 1, 2, 3.

Want to learn more about living life gluten-free? Order the Complete Guide to Gluten-Free Living

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Help us help kids! Donations are crucial to the quality of our programs. Donate today and keep us rocking! Thank you!

REFERENCES

1. Fasano A, Berti I, Gerarduzzi T, Not T, Colletti RB, Drago S, Elitsur Y, Green PH, Guandalini S, Hill ID, Pietzak M, Ventura A, Thorpe M, Kryszak D, Fornaroli F, Wasserman SS, Murray JA, Horvath K. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med. 2003 Feb 10;163(3):286-92.
2. New England Celiac Organization. Gluten-Free, Off To A Fresh Start. Presentation. October 2016.
3. UChicago Medicine. Celiac Answer Bank. Celiac Disease Center Website. http://www.cureceliacdisease.org/faq/what-percentage-of-those-with-the-genes-will-develop-celiac-disease/ . Published August 2012. Updated 2018. Accessed December 10, 2018.
4. US Food and Drug Administration (FDA). Questions & Answers: Gluten-Free Food Labeling Final Rule. FDA Website. https://www.fda.gov/Food/GuidanceRegulation/GuidanceDocumentsRegulatoryInformation/Allergens/ucm362880.htm . Updated May 2, 2016. Accessed October 22, 2017.
5. Thompson T. How Much Gluten Is 20 Parts Per Million? Gluten Free Dietitian website. https://www.glutenfreedietitian.com/how-much-gluten-is-20-parts-per-million/. Published February 6, 2008. Updated 2017. Accessed November 11, 2017.
6. Catassi C, Fabiani E, Iacono G, D'Agate C, Francavilla R, Biagi F, Volta U, Accomando S, Picarelli A, De Vitis I, Pianelli G, Gesuita R, Carle F, Mandolesi A, Bearzi I, Fasano A. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. Am J Clin Nutr. 2007;85(1):160-6.
7. Sharma GM, Pereira M, Williams KM. Gluten detection in foods available in the United States - a market survey. Food Chem. 2015;15(169):120-126.