How to start your Gluten Free Life when you've just been diagnosed with Celiac (From A Celiac Dietitian)
So you’ve just been diagnosed with Celiac disease…now what?
I get it. It can be stressful and overwhelming to learn the ins and outs of a new diagnosis, especially one that affects every meal!
What’s the good news? YOU GET TO CHOOSE how you respond to the diagnosis. Instead of responding from a place of fear, I’m here to support you in responding from a place of educated empowerment.
How to start your Gluten Free Life when you've just been diagnosed with Celiac…
Celiac Starter Kit:
3 Tips To Start Your Gluten Free Life:
First Off, You’re Not Alone
An estimated 1 in 133 Americans, or about 1% of the population, has celiac disease. However, recent screening studies point to a potentially higher prevalence than 1% in the United States.
A retrospective study by the Mayo Clinic, found that 44% of first-degree relatives (with celiac) had celiac disease. Other studies have shown that it is particularly common in female family members, if your aunt, mom or sister has celiac, it is that much more likely that you (if a female) will have it.
Celiac diagnosis in 2023 comes with A LOT of resources, here’s some of my tried and true faves:
Beyond Celiac - great for stats, research updates, the general facts
Findmeglutenfree app - I live and die by this for safely eating out!
Danielle Walker cookbooks - she also struggles with autoimmune and ALL of her recipes are completely gluten free; many are free of other allergens too!
Bloggers I love that provide healthy & tasty GF recipes - Elana’s Pantry, Paleo Running Momma, The Defined Dish (I love her stuff, not all is gluten free but she has a whole section of GF here)
Gluten Free Globetrotter - she has some great gluten free travel guides!
Some of my favorite Celiac-safe spots in Boston include Mother Juice, Violette Bakery, Naco Taco, Beneventos (they also serve gluten but are quite aware of GF pizza safety), Legal Seafood’s, Bar Taco; in Austin I love The Well, Gati Bakery (also has DF GF icecream), Picnik, Comedor (they don’t advertise it but they are GF except for 1 dessert), Suerte (they have gluten but are highly acommodating).
Gati bakery in Austin, TX is completely GF and Celiac Safe.
I have loved their icecream cake! (pictured here)
What You’ve Probably Heard:
Celiac disease is a genetic autoimmune disease that damages the villi of the small intestine and interferes with the absorption of nutrients from food. Oftentimes, people refer to it as a food allergy but it is actually an autoimmune condition where the body attacks itself in response to gluten ingestion.
There are currently no treatments or cures; A 100% gluten-free diet is the only existing treatment for celiac disease today.
Gluten is a protein found in wheat, barley, and rye. It is also commonly found in oats because these are highly cross-contaminated with wheat during growing and processing.
Certified Gluten Free Oats safe for Celiac = One Degree Foods & GF Harvest
NATURALLY GF GRAINS: amaranth, buckwheat, corn, millet, quinoa, white/brown/black/ arborio (risotto) rice, wild rice, sorghum, teff, certified gluten-free oats.
PS: potato, cassava and tigernut are all naturally GF/grain free!
GLUTEN-CONTAINING GRAINS: wheat, barley, rye, oats (unless certified GF), bulgur, cracked wheat, durum, einkorn, farro, farina, hydrolyzed wheat starch, kamut, matzoh, rice pilaf, seitan, semolina, spelt, wheat bran, wheat germ, wheat grass, wheat starch, and wheat berries.
Eating Gluten Free can definitely be a healthier, more nutrient-dense approach to eating AND it also can be highly processed! Here’s some of my favorite nutrient-dense GF brands that make my life easier:
Siete Foods tortillas & chips
Bread Srsly bread
Simple Kneads bread
Hu Kitchen - especially their grain free crackers!
Elemental Superfood bars
Epic meat jerky sticks
Nuts.com - for celiac-safe grains/nuts/baking products
Common sources of gluten in the home (specifically in a home shared with gluten-eaters):
Shared nut butter or condiment jars
Toasters
Wooden cookware - this is porous, throw away or get dedicated wooden spoons/cutting boards
Baking sheets - I layer with parchment if it’s a shared sheet
Colanders - pasta easily sticks to these!
Pantry - if it’s a pantry with lots of open flour bags - keep in mind cross contamination!
Grills - heat doesn’t ‘kill gluten’; use a cast iron or foil on a shared grill
Fryers - unless a fryer at a restaurant is dedicated, fried foods (even if just potatoes) aren’t safe for celiac
Asian Foods/sauces - many have soy sauce, hoison is rarely gluten free
Pizza - unless they take specific precautions for celiac disease (like Beneventos mentioned above) I don’t recommend GF pizza to those who are Celiac (sadly); but this crust recipe is DELISH
Make sure to be specific when you eat out/travel
Communicate to your server that you have Celiac disease (a gluten allergy) and therefore cross-contamination with gluten (anything derived from wheat/barley/rye or oats) can make you sick. Foods prepared in a shared fryer or grill with gluten will not be safe!
Check out my Gluten Free Travel Guide here
When eating out…
I always plan ahead, check the menu and findmeglutenfree app for reviews ahead of time.
My restaurant script: ‘Hi, I have a strict gluten allergy (celiac disease) and cross contamination with gluten is a health issue for me, can your restaurant accommodate this?’
What You May Not Know Yet:
It is estimated that up to 83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions.
Current research indicates that 60% to 70% of those diagnosed with celiac disease are women.
Celiac disease (especially when improperly treated or left undiagnosed) can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases.
Gluten is SNEAKY AF and someone with Celiac needs to be uber careful…research supports that the smallest crumb (1/1000th of a slice of bread) is the amount that can affect and damage someone’s body who has celiac disease! AKA: Tactics to prevent cross contamination is the name of the game!
Certified gluten free on packages means it has been third party tested to contain 20 ppm or < gluten by the Gluten-Free Certification Organization (GFCO)- this is considered the safe upper limit by the FDA for celiac disease.
There are a number of other certifications including the Celiac Support Association, that test and certify to less than 5ppm. They also require that foods be free from oats, even gluten free oats. This is a helpful blog to know the labels to look for.
SPARK NOTES: In general, unless you know that you are highly sensitive to oats, the GFCO certification is considered safe for all celiacs.
When a processed food is labeled gluten free (but not certified as listed above) and it is a naturally gluten free food like potatoes, corn chips, meat, fruit/veg, yogurt, milk it is considered safe for celiac (make sure to see next bullet point)
Grains and some nuts can be sources of gluten contamination
Nuts.com is my favorite place to get certified GF Celiac-safe grains/nuts/seeds/baking flours
Protein bars/powders or granola bars in general - these usually have grains and oats, therefore this symbol is IDEAL
When a product lists it ‘may contain gluten/wheat’ or it was ‘produced on shared equipment with wheat’ this is unsafe for Celiac
Feel your feelings
ALLOW: It’s normal to feel overwhelmed by a new diagnosis! Feel what you’re feeling, ALLOW it to be there. You might be angry, sad, excited, depressed…or everything in between. When we allow ourselves to feel and name what we’re feeling, it helps us to transmute it. REMEMBER: Emotions are natural AND temporary…you won’t feel this way forever!
BREATHE: What’s one way I work on feeling my feelings? - I Breathe! Deep inhale into the belly, deep exhale out of the mouth. Maybe a sigh on the exhale. Maybe do it 5x in a row. Again, feel it to transmute it. My Breath Work Starter Pack is a great way to start reducing your stress level with breath.
TALK: Share about what you’re going through with trusted friends and family. We are never meant to go it alone! Sharing your experience - the happy, the sad, the confusing…it’s all ok! We aren’t meant to be ‘Positive Patricias’ every day of our lives… you are a human and the best way we connect with others is by being real with ourselves and then sharing from the heart!
PS: Connect with me on IG (@groundednourish) I love connecting with anyone who has shared in this experience of Celiac. I’m here for you!
Need more tips for thriving gluten free AND some recipes taboot?
Grab a copy of my cookbook How To GLOW Gluten Free here.
PS: If you’re looking for the support of a community of women who just ‘get it’ and you’d like to have monthly 1:1 nutrition sessions with me..consider my NOURISHED membership here.
References:
https://www.beyondceliac.org/celiac-disease/facts-and-figures/
https://pubmed.ncbi.nlm.nih.gov/28722929/
