Our GFF Beginners Guide to Celiac
Updated: Aug 9
The Basics:
Celiac is an autoimmune disease and not an allergy. People with celiac have an autoimmune response to gluten, a protein that can be found in wheat, rye, barley, malt, or oats. The body attacks itself because it sees even small traces of gluten as an invader. Even if someone with celiac doesn’t feel sick, the intestinal tract is damaged when gluten is consumed.
Finally being diagnosed is the first step to being healthy!! Most people see doctors for an average of 6-10 years before the doctor finally tests for celiac. It is estimated that at least 1% of the US population has celiac yet 83% remain undiagnosed. By just changing the foods eaten, a person with celiac can avoid all symptoms! No medicines are required. Celiac requires a lifelong management of a strict GF diet, but once find your new go-to foods and approaches, it stops being so all-consuming.
Even small traces of gluten are bad for people diagnosed with celiac, even if they have no obvious reaction. Saying NO to gluten-containing foods, and carefully avoiding cross-contamination, is the loving thing to do for your family member or friend with celiac. It takes up to a year to heal from a gluten-exposure, so no cheating!
Symptoms from gluten-exposure may change over the years, but there is simply no outgrowing celiac. There is no such thing as just having "a little" celiac. Some people are gluten intolerant but that is different.
Symptoms vary greatly:
Gluten damages the intestinal tract and can cause diarrhea, constipation, vomiting, reduced physical growth, reduced ability to absorb nutrition, anemia, reduced ability for the brain to focus, lactose intolerance, increased rate of cancers, infertility, loss of consciousness, and more. It may make potty training more difficult, and cause accidents beyond the child’s control. Some people diagnosed with celiac are asymptomatic but still need to be just as careful!
After going GF, symptoms may worsen when exposed to gluten, as the body wants to reinforce the need to stay GF. Science is researching exciting medicine to help with accidental exposures but nothing is available yet. Follow Beyond Celiac for the latest medical advances. Reactions like nausea and vomiting can sometimes be lightened with anti-nausea drugs, but speak to your doctor.
Test your family:
Everyone in the family should get a bloodtest for celiac. It runs in families. We call that shaking the family tree. But before cutting back on gluten, check for celiac! Eliminating gluten from your diet before getting tested may impact the quality of testing results. Also, see if your insurance will cover the gene test at the same time. After an initial blood test is already done, insurance often won’t pay for the gene test. If you have the gene (or don't know if you have the gene and a close family member has celiac), get retested every 3-5 years or if you develop symptoms. Often insurance will also cover an initial visit to a celiac nutritionist after a diagnosis.
THE GF DIET:
Avoid these ingredients:
Wheat
Rye
Barley
Malt
Oats (Your doctor may let you add back GF oats after a while)
Enjoy these instead:
Rice
Potatoes
Corn
Quinoa
Lentils and beans
All vegetables and fruit
All-natural meat, fish, and poultry
You can make or buy GF substitutes for most baked goods, but it is less expensive and healthier to eat foods that are naturally GF. Certified GF labels are great but it is not the only way something is GF. Check the ingredients and contains statements for the avoided ingredients. Our family doesn’t worry about “made in the same factory” warnings but that is a personal decision.
AVOID CROSS-CONTAMINATION
Q. What is cross-contamination?
A. When GF foods become not safe because they have come in contact with gluten. Someone with celiac needs to avoid even teeny tiny too hard-to-see crumbs of gluten. Food can’t even touch something that has been touched by gluten.
Examples of cross-contamination:
If you stuck the knife in the butter and spread it on the bread and put the knife back in the butter, there may be tiny bits of bread in the butter. The butter was “cross-contaminated” and is now not safe for someone with celiac.
If you dip your pita in the shared hummus, there may be tiny bits of pita in the hummus. The hummus was “cross-contaminated” and is now not safe for someone with celiac.
If you stick the same measuring cup in the sugar that you just stuck in the flour, there may be tiny bits of flour in the sugar. The sugar was “cross-contaminated” and is now not safe for someone with celiac.
If you fry potatoes in the same oil that was used for something with breadcrumbs, there may be breadcrumbs in the oil. The oil was “cross-contaminated” so anything cooked in that oil is now not safe for celiacs. This is a common mistake at restaurants serving fried food like french fries! Always ask what else is in the fryer, even if the item is labeled gf. Only order fried food that is prepared in a dedicated GF fryer.
You need to decide whether to keep your whole home GF, mostly GF, or mixed. If your home isn't all GF, everyone has to be educated and very careful not to cross-contaminate. Our whole house is GF to make this easier for our kids. My mother (non-celiac) and father (celiac) keep the house mostly GF except for her sandwich bread and cereal. My sister has a mixed house (2 celiacs, 3 non-celiac), and everyone in the family is involved in keeping the food safe.
Eating out at a restaurant or at other people’s houses is the most challenging. It is important to tell people and not be shy about food restrictions. Asking lots of questions about how they avoid cross-contact with gluten is important before eating there. When in doubt, don't eat out. Our kids often pre-eat and bring snacks when they are uncertain about what the situation will be. Create or join a local celiac support or social media group to share restaurant experiences. Apps like Find Me Gluten-Free and Gluten Dude can help.
Practical tips to avoid cross-contamination:
Drop from above for shared items. For example, if you drop the butter or hummus onto a plate for individual use, instead of communal access of spreading or dipping, it stays safe.
Serve your family member with celiac first so you can be sure nothing is contaminated with gluten-containing foods by other guests
Put foil down on cooking surfaces, like in the toaster oven, that was used for gluten
Don’t use toasters that aren’t dedicated GF. If a restaurant or friend offers you GF bread, confirm that they won't put it in a shared toaster
If you decide to have a mixed kitchen, label things that are GF or NOT GF, and if unsure whether something was contaminated, consider them contaminated
Use squeeze bottles for condiments
Try to limit and contain the gluten products you have in the house
Replace and maintain dedicated GF pasta strainers or other hard-to-clean utensils or pans
When entertaining, either just serve everything GF, or separate GF from no-GF in separate serving areas
Restaurants are often very loose about their GF definitions so ask questions about ingredients and how they avoid cross-contamination. Again, don't order french fries or other fried food unless you can confirm that they are prepared in a dedicated GF fryer. Often other things are fried in the same oil.
Easier for younger children if you try not to eat their favorite gluten foods in front of them, until you find happy substitutes (sorry if this is just too obvious).
HIDDEN GLUTEN:
Meats (not labeled well as not governed by the FDA--only eat all natural with no fillers)
Medicines (weak labeling laws, need to tell pharmacy and check all medicines)
Lipsticks and lip glosses (weak labeling laws)
Bath soaps, shower gels, shampoos (weak labeling laws)
Soy sauce and bottled dressings
Spice packets
Bouillon cubes (some have wheat flour)
Sausages or other mystery meat
Packaged products of normally GF items, like nuts, beans, lentils, and dried cranberries, may have a "may contain wheat warning" because of cross-contamination in the factory
FINDING YOUR NEW NORMAL:
Our support group can help you...
Find your new regular foods. What are your current regular foods for breakfast, lunch, snacks, and dinner? How can we adjust or replace them to be GF?
Review your food pantry and read the labels
Educate immediate, and extended family, and friends to increase safe homes to eat. You can share this page with them to start.
Find the joy in food again!!
We are here for you!
Sheryl Harpel
Founder, Gluten Free Friends
Celiac disease and food allergies are considered disabilities and are covered under the Americans with Disabilities Act (ADA). Learn more on FAACT's ADA Resource page.
Useful links:
National Celiac Association: Getting Started