Our GFF Beginners Guide to Celiac
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 gluten as an invader. Even if someone with celiac doesn’t feel sick, the intestinal tract is being damaged if gluten is consumed.
THE GOOD NEWS: With celiac, if you properly change the diet there is no medicine or anything else needed to stay healthy! The only cure is a strictly gluten free (GF) diet.
MORE GOOD NEWS: 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 1% of the US population has celiac yet 83% remain undiagnosed.
Even small traces of gluten are bad for celiacs, even if you don’t see obvious symptoms.
Symptoms are different for all celiacs. 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, and more. It may make potty training more difficult, and cause accidents beyond the child’s control.
All symptoms can be avoided by strictly following the gf diet.
My children were diagnosed 10+ years ago. If my daughter gets accidentally exposed to gluten she gets sudden fatigue and can even pass out, and then vomits terribly. She then feels tired for a week. My son has very little symptoms. However, he needs to be just as careful as my daughter as there is still damage being done inside. It can take up to a year to heal from exposure.
You do not outgrow celiac. It requires lifelong management of a gluten free diet.
You can’t have a little celiac. You either have it or you don’t. Some people are gluten intolerant but that is different.
Science is researching exciting medicine to help but nothing is available yet. Follow Beyond Celiac for latest medical advances
There is no cheating allowed on this diet! Your celiac child’s insides will be hurt by cheating and it takes a long time to heal from any exposure. Saying NO to gluten foods is the loving thing to do. Never cheat.
Once your child is gluten free, symptoms may be worse when exposed to gluten, as the body wants to reinforce the need to stay gluten free.
Eventually, everyone in the family should be checked for celiac, as it runs in families. We call that shaking the family tree. Don’t eliminate gluten from your diet before getting tested or you will impact your ability to be tested. It is good to check for the gene during the first test, because once you’ve been tested, insurance often won’t pay for the gene test. If you have the gene, you should probably get retested every 3-5 years or if you develop symptoms.
In my family, 10+ years ago my sister was diagnosed at age 50 during her colonoscopy. My children, my sister’s son and my father were then all diagnosed that year! We needed to learn a lot but we have fun cooking for each other now. Everyone is healthy now that they are gluten free.
INGREDIENTS
You can make or buy gf substitutes for most baked goods, but it is less expensive and healthier to eat foods that are naturally gluten free. Certified “GF” label is great but it not the only way something is gf. We need to look at the ingredients and contains statements. Our family doesn’t worry about “made in the same factory” warnings but that is a personal decision.
Avoid these ingredients:
Wheat
Rye
Barley
Malt
Oats (Gastro doctor may let your celiac child have gluten free oats after being gluten free for a while but for now skip it)
Enjoy these instead:
Rice
Potatoes
Corn
Quinoa
Lentils and beans
All vegetables and fruit
All natural meat, fish and poultry
AVOID CROSS CONTAMINATION or CROSS CONTACT
Q. What is cross contamination or cross contact?
A. When gluten free foods becomes 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 dip your pita in the shared hummus, there may be tiny bits of pita in the hummus. The hummus is now not safe for celiacs. The hummus was “cross contaminated”
If you stuck the knife in the butter and spread it on bread and put knife back in the butter, there may be tiny bits of bread in the butter. The butter is now not safe for celiacs. The butter was “cross contaminated”.
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 is now not safe for celiacs. The sugar was “cross contaminated”.
If you fry potatoes in the same oil that was used for something with breadcrumbs, there may be breadcrumbs in the oil. The potatoes are now not safe for celiacs. The oil was “cross contaminated”. (This is a common mistake at restaurants. 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 gluten free, mostly gluten free, or mixed. If your home isn't all gluten free, everyone has to be educated and very careful not to cross contaminate. My whole house is gluten free to make this easier for my kids. My mother (non celiac) and father (celiac) keep the house mostly gluten free except for her sandwich bread and cereal. My sister has a mixed house (2 celiacs, 3 non celiacs) 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 difficult. 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. My kids often pre-eat and bring snacks when they are uncertain what the situation will be.
PRACTICAL TIPS:
Drop from above, no dipping (For example if you drop the hummus on the plate with a spoon without touching anything it stays safe.)
Serve your 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 were used for gluten
Don’t use toasters that aren’t dedicated gf
Label things that are OK or NO if they have been contaminated or not gf (and if unsure whether they are contaminated or not, consider them contaminated to be safe.)
Use squeeze bottles for condiments
Try to limit and contain the gluten products you have in the house
Replace and maintain dedicated gluten free pasta strainers or other hard to clean utensils or pans
Easier for younger children if you try not to eat her favorite gluten foods in front of them, especially 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 gluten free items, like nuts, beans and lentils, dried cranberries, may have "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, dinner? How can we adjust or replace them to be gluten free?
Review your food pantry and read labels
Educate immediate, extended family, and friends to increase safe homes to eat
Find the joy in food again!!
We are here for you!
Sheryl Harpel
Founder, Gluten Free Friends
Useful link:
https://nationalceliac.org/celiac-disease-resources/