celiac testing – Gluten Free RN

FAQ’s About Celiac Disease Answered EP047

October 27, 2017

by Nadine Grzeskowiak, RN with No Comment Podcast

How do I get over feeling sad about giving up the foods I love? Don’t celiac patients look a certain way? Can I eat wheat when I travel to Europe?

Today the Gluten Free RN is answering your frequently asked questions about celiac disease, clearing up misconceptions around the safety of wheat in Europe, the appearance of a celiac patient, and the percentage of the population that suffers from gluten sensitivity. She speaks to the challenges of getting your healthcare provider to do appropriate testing for celiac disease and the learning curve associated with changing your diet.

Nadine also explains the risks of embarking on a gluten challenge and the benefits of a super-good high fat diet. She discusses why a single breadcrumb can trigger an autoimmune response and how she uses tools like a Nima Sensor when she eats out. Listen in and learn why one negative test doesn’t rule you out for celiac disease, especially if you suffer from type 1 diabetes.

Having celiac disease doesn’t mean you have to live in a bubble. The Gluten Free RN wants to give you the answers you need to navigate the world—happy, healthy and gluten-free!

What’s Discussed:

‘My sister has celiac disease, but I tested negative. I do have type 1 diabetes… What should I do?’

Get genetic test for HLA-DQ2, HLA-DQ8
Virtually every type 1 diabetic is gene carrier
One test doesn’t rule you out

‘Why do you use a Nima Sensor or EZ Gluten test strips? Doesn’t it give you a false sense of security?’

Have to trust others to prepare food when out
Not foolproof, but does give decent idea

‘A single breadcrumb or dusting of flour can trigger an autoimmune response? Really?’

‘I am overweight, I have dark hair, and I’m not of European descent. Don’t celiac patients look a certain way?’

Can’t see genes, celiac disease can affect any population worldwide
Overweight patients tend to be malnourished (unable to absorb nutrients)
Never rule out based on appearance, may not show physical symptoms

‘Why do you recommend a super-good high-fat diet?’

‘I’m already on a gluten-free diet. Do I need to go back to gluten to prove I have celiac disease?’

‘My cousin was just diagnosed with celiac disease, and she is very sad about giving up the food she grew up with. How can she get started on a gluten-free diet?’

Steep learning curve goes with process
Okay to feel sad, angry
Remember you will get better without surgery, medication
Try to see as an adventure

‘Why won’t my doctor order tests for celiac disease?’

Countries with for-profit healthcare tend to do poor job of testing, follow-up care
Fragmented, inaccurate education around celiac disease
Be own best advocate

‘Can I eat wheat in Europe?’

‘Is it true that celiac disease affects 1% of the population?’

1% translates to 3M people
3% is more accurate statistic
Won’t know for sure until conduct mass screening

by Nadine Grzeskowiak, RN with No Comment Podcast

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:

Whole Foods

Natural Grocers

First Alternative Co-op

Connect with Nadine:

Instagram

Facebook

Contact via Email

‘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

Recommended Labs and Follow-up for Celiac Disease and Gluten Intolerance EP014

March 10, 2017

by Nadine Grzeskowiak, RN with No Comment Podcast

Freeze your poop and mail it to Texas!

In all seriousness, a stool analysis can offer vital information about your body’s absorption of fat and nutrients, and today the Gluten Free RN explains the significance of knowing your fecal fat score and other baseline labs that can offer clues about how gluten has adversely affected your health.

Nadine outlines recommended labs for celiac disease and gluten intolerance, discussing how each test can inform the way you tweak your diet or add necessary supplements to your health care routine. She also reviews the importance of follow-up labs to track how you are healing and help you get better, faster!