The first doctor to treat celiac disease with any great success was Dr. Sidney Haas, who was the creator of what is known today as the Specific Carbohydrate Diet (SCD). I often suggest my patients and their families follow the SCD at home to help heal the gut from all of the issues it has gone through.
Before the invention of the SCD 1 in 4 celiacs died an early death. This was before the understanding that celiacs needed to follow a strict gluten free diet.
I have found many patients continue to feel ill even on an entirely gluten free diet and are much improved by also following the Specific Carbohydrate Diet. An alternate diet that is based on SCD is the GAPS diet, which varies from SCD in a few key ways: more focus on fermented foods and bone broths, both of which are helpful in rebuilding damaged intestinal walls.
If at all possible: the house should be gluten free for everyone in it
If not possible to have a gluten free household: there must be a gluten-free designated area in the kitchen with its own toaster and cutting board.
Designated gluten-free condiments to avoid cross contamination. Maybe that means two jars of peanut butter, two sticks of butter etc. that are very clearly labeled and kept in very separate areas in the refrigerator.
Rules for eating outside the home:
Avoid easily contaminated foods such as pizza baked in a non-gluten free oven and french fries that might be fried in oil used to fry non-gluten free foods or have been coated in flour before frying.
For school: a doctor’s note to explain the medical necessity of the gluten free diet.
Many schools today can provide a gluten-free lunch; if this is not possible a packed lunch should be provided.
Discuss with your child the importance of only eating gluten free foods at all times. Often when a person has been gluten free for a few months they will have very negative reactions to gluten exposure.
Larger metropolitan areas (and often smaller towns, as well) will often have restaurants that are familiar with gluten-free cooking. Get to know the local restaurants so you have choices.
Chain restaurants that are good sources of gluten free dining: Wendy’s, Chick-Fil-A, The Old Spaghetti Factory, P.F. Chang’s, Outback Steakhouse. All of these restaurants have a gluten free menu and are generally used to cooking for celiacs. That being said, there is always the possibility of being ‘glutened’ when eating food prepared by someone else.
One of the best ways to help a child remain gluten free and not feel left out is to have that child’s home be the default location for hanging out with friends and family. This will ensure the foods the child is eating will be gluten free.
Also: make sure to have gluten-free snacks and treats available in the cupboard, fridge or freezer to take along to get-togethers or send to school for birthdays and other celebrations.
Community Support of the celiac:
Look into Celiac and gluten-free eating support groups. Being able to talk to people in your same position is absolutely key to continuing a sometimes very challenging lifestyle.
If in-person support groups are not available: join online communities, read gluten-free blogs, read books about celiac disease or subscribe to specialty magazines for a deeper connection to the celiac community.
Food is often how we connect with one another and celiac disease can make this impossible, being able to find a community where this connection can occur is key to nourishing relationships.
Supplements that may help:
-Probiotics that are from non-dairy sources: ask your doctor about the best probiotic for you.
-Digestive enzymes: general digestive enzymes to help with digestion, digestive enzymes for dairy, if you are going out to eat or eating food you are concerned may be cross-contaminated: a gluten protease (this should only be to help prevent any possible cross-contaminated reactions, NOT for ingestion of gluten on purpose).
-Good quality multivitamin: Celiac disease often leads to low vitamin and/or mineral levels because of malabsorption.
-Anti-inflammatory and demulcent herbs: ask your naturopath about these herbs. Aloe vera gel is a good soothing herb to add into smoothies: make sure it is food grade, if you get any of the outer leaf it may cause diarrhea.
Consider doing the GAPS or Specific Carbohydrate diet: the SCD was created with Celiacs in mind and when it started being used actually saved the lives of many Celiac patients.
Many Celiacs have other food sensitivities or intolerances because of the damage to their gut: these people may need to avoid more foods than just gluten. Often people with Celiac disease have a very hard time with dairy as well because of the damage to the brush border in their small intestines. The nice thing is that with some intensive gut healing and avoidance of gluten and other bothersome foods you may be able to add the non-gluten foods back in eventually.