You don’t have to prove to anyone that you have celiac disease proper. Because food functions as both medicine and poison, it is important to have all the facts before you get talked into a gluten challenge … and the fact is, going back on gluten after you have adopted a gluten-free diet will cause organ damage.
The Gluten Free RN speaks to the motivation behind doing a gluten challenge, the consequences for celiac and gluten sensitive patients, and her work as a patient advocate to discourage people from being talked into a gluten challenge. She offers a detailed risk versus reward analysis of braving a gluten challenge, explaining how the maintenance of a gluten-free diet prevents the development of celiac disease and other autoimmune disorders.
Nadine also covers the unreliable nature of celiac testing in the US, where the medical community lacks savvy in interpreting results, and explains why biopsy results are no longer considered the gold standard of celiac testing. Listen in to understand the recommended diet for those who have adopted a gluten-free lifestyle and why it requires a long-term commitment. Get armed with information and protect yourself and your family from the dangerous, irreversible consequences of a gluten challenge!
What’s Discussed:
The gluten free lifestyle
- Involves long-term change
- Can’t take days off
Why you should be cautious of restaurants with a gluten-free menu
- Very few actually deliver gluten-free meal
- Employees may not understand contamination, cross-contamination
The advantages of living in the Northwest US
- Almost 50 designated gluten-free/Paleo restaurants in Portland
- Farmer’s markets
- Whole Foods, Natural Grocers
- Local food Co-ops (First Alternative, LifeSource)
Nadine’s recommendations re: food options
- Organic produce
- Grass-fed meat
- Whole foods produced locally
The misguided reason why people do a gluten challenge
- Want to prove presence of celiac disease
- You don’t have to prove to anyone, especially if HLA-DQ2 or HLA-DQ8 gene carrier
- 30-50% of population has genetic predisposition to celiac disease
The value of a gluten-free diet in preventative medicine
- Averts celiac disease and associated issues
- Prevents other autoimmune disorders
- Type 1 diabetes
- Lupus
- Sjögren’s
- Rheumatoid arthritis
- MS
- ALS
What it means to do a gluten challenge
- Targets patients who have adopted a gluten-free diet
- Requires they consume gluten (2-6 slices of bread/day)
The consequences of a gluten challenge on celiac and gluten sensitive patients
- Seizures
- GI bleeds
- Appearance of bowel cancer, bone cancer
- Inability to get out of bed
- Organ damage
The risks vs. rewards of enduring a gluten challenge
- No benefit other than proving presence of celiac disease
- Can be thrown into refractory celiac disease (permanent, irreversible damage to intestines)
Why Nadine would never do a gluten challenge
Why biopsy results are no longer considered the gold standard of celiac testing
- Often misinterpreted, read incorrectly
- Damage can be patchy
Why an antibody panel can be unreliable in identifying celiac disease
- Takes time for body to mount autoimmune response
- 70% false negative nationwide
How long it takes to obtain celiac diagnosis
- Two to three weeks in countries where medical community is savvy about celiac disease
- Nine to 15 years in US
Nadine’s advice around celiac testing
- Seek practitioner with experience reading results
- Request total IgA, IgG
- Consider Cyrex Laboratories, LabCorp or EnteroLab
The enduring nature of celiac disease
- Doesn’t go away
- Children don’t grow out of it
Nadine’s nutrition guidelines for celiac patients
- Gluten- and dairy-free
- Ideally Paleo
- Nutrient dense foods
Nadine’s work as a patient advocate
- Seeks to help people stay healthy, avoid illness/disease
- Patients get lives back, active and thriving
Resources:
Connect with Nadine:
‘Your Skin on Gluten’ on YouTube
Books by Nadine:
Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
