Posts tagged: gluten sensitivity

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

Books by Nadine:

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

Resources:

Gluten Free RN EP027: Type 1 Diabetes and Celiac Disease

Nima Sensor

EZ Gluten Test Strips

Connect with Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

Books by Nadine:

Dental Issues and Celiac Disease EP039

September 1, 2017

by Nadine Grzeskowiak, RN with No Comment Podcast

Did you know that it is possible to diagnose celiac disease with a smile?

Damage from gluten starts in the mouth, and today the Gluten Free RN explores the important role dentists can play in identifying undiagnosed celiac disease. She outlines the symptoms of celiac disease that present in the mouth, the follow-up questions dentists should ask when they notice dental enamel defects or aphthous ulcers, and the nature of the tongue as an indicator of overall health.

This episode covers how the plastics in orthodontic retainers might contain gluten and what to do if you are accidentally exposed. Nadine also explains the relationship between fat-soluble vitamins and celiac disease, as well as the nutrient deficiencies a potential celiac patient should test for. You’re never fully dressed without a smile, so listen in to understand how to keep your mouth healthy—and prevent the accumulation of complications from celiac disease with a whole food, gluten-free diet!

What’s Discussed:

How the GI tract functions

Starts at mouth, ends at rectum
Allows us to consume food, liquid
Only extract what body needs
Expel the rest

How damage from gluten presents

Malabsorption of nutrients
Inflammation
Autoimmune issues
Type 1 diabetes
ALS
Lupus
MS
Sjögren’s
Leaky gut

How dentists can play an important role in identifying undiagnosed celiac disease

The symptoms of celiac disease that present in the mouth

Dental enamel defects
Aphthous ulcers (canker sores)
Cheilosis (cracks, open sores where upper and lower lip join)
Dry, cracked lips
TMJ—temporal mandibular joint disorder
Pain where jaws meet
Inflammation of the jaw
Clicking
Lock jaw
Mouth pain, burning
Oral lesions
Tongue pain, tingling
Redness, swelling of the tongue
Tongue sores
Changes in taste, smell
Diminished sensory input
Dry mouth
Sore throat
Difficulty swallowing
Increased thirst
Bleeding gums
Delayed eruption of teeth
Pyrosis
Oral lichen planus
Glossitis (inflammation of tongue)
Clearing throat
Sinus infections
Redness, swelling of the uvula

How Nadine treats gluten exposure

Activated charcoal
Drink water

The grains to look for in personal care products (e.g.: lip balm)

Wheat
Barley
Rye
Oats

The relationship between fat soluble vitamins and celiac disease

Gluten causes malabsorption
Vitamins A, D, E and K are fat soluble
Under 40 in vitamin D may indicate deficiency in all

How we tested for celiac disease in children in the early 20^th century

Fecal fat score
Pale stool that floats suggests malabsorption of A, D, E and K

Why parents should be tested for celiac disease prior to pregnancy

The fetal development issues that may present if an expectant mother is unable to absorb nutrients

Dental enamel defects
Smaller jaw formation
Smaller airway passages

Why Nadine advocates for a mass screening

How gluten in plastics, personal care products can prevent celiac patients from healing

The questions dentists should ask when they notice dental enamel defects, aphthous ulcers

Other clinical celiac symptoms (abdominal pain, diarrhea, weight loss, anemia, fatigue)
Associated disorders (type 1 diabetes, thyroiditis, etc.)
Family history of celiac disease

Why we need to get much better at recognizing celiac signs and symptoms

Even in Canada, diagnosis takes 11.7 years

Why Eastern medicine examines the tongue as an indicator of overall health

The genes that indicate a predisposition to celiac disease

HLA-DQ2
HLA-DQ8

Why it is acceptable to adopt a gluten-free diet if your antibody test is negative for celiac disease

The deficiencies a potential celiac patient should test for

Calcium
Magnesium RBC
Vitamin D
Zinc
Folic acid

Why thrush may be an indicator of celiac disease or gluten sensitivity

Why one negative test for celiac disease doesn’t rule anyone out

The importance of early diagnosis

Symptoms accumulate over the years

The Paleo diet Nadine suggests for celiac and gluten-sensitive patients

Whole food
Focus on local, fresh
100% grass-fed meat (no antibiotic, no hormone)
Fish and eggs
Nuts and seeds
100% organic fruits and vegetables

Resources:

“An Orthodontic Retainer Preventing Remission in Celiac Disease” in Clinical Pediatrics

“Oral Manifestations of Celiac Disease: A Clinical Guide for Dentists” in the Journal of the Canadian Dental Association

Gluten Free RN Podcast EP027: Type 1 Diabetes and Celiac Disease

“The Association Between Celiac Disease, Dental Enamel Defects, and Aphthous Ulcers in a United States Cohort” in the Journal of Clinical Gastroenterology

“Small-Bowel Changes in Recurrent Ulceration of the Mouth” in Hepatogastroenterology

“Oral Signs and HLA-DQB1*02 Haploytypes in the Celiac Paediatric Patient: A Preliminary Study” in Autoimmune Diseases

“The Oral Manifestations of Celiac Disease: Information for the Pediatric Dentist” in Pediatric Dentistry

“Oral Aphthous Ulcers and Dental Enamel Defects in Children with Coeliac Disease” in Acta Paediatrica

“Oral and Dental Manifestations of Celiac Disease” in the New York State Dental Journal

“Jejunal Mucosal Abnormalities in Patients with Recurrent Aphthous Ulceration” in The British Medical Journal

“Dental Enamel Defects in Adult Coeliac Disease” in the European Journal of Internal Medicine

“Screening for Celiac Disease in Children with Dental Enamel Defects” in ISRN Pediatrics

“Celiac Disease Associated with Recurrent Aphthae” in Gut

“Importance of Oral Signs in the Diagnosis of Atypical Forms of Celiac Disease” in Recenti Progressi in Medicina

Connect with Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

Books by Nadine:

The Impact of Undiagnosed Celiac Disease on Fetal Development and Maternal Health EP024

May 19, 2017

by Nadine Grzeskowiak, RN with No Comment Podcast

‘With our technology, every time a woman dies, it’s a medical error.’

Recent reports have uncovered some alarming statistics regarding maternal mortality rates in the United States. While these numbers are on the decline in every other developed nation, pregnant women in the US are at greater risk of dying than they were in recent years. We know that undiagnosed celiac disease has a significant impact on maternal health and fetal development, and we must identify expectant mothers (and fathers) who have the potential to reap remarkable benefits from a simple diet change.

This issue is especially important to the Gluten Free RN as a mother herself – as well as an emergency ER nurse certified in PALS, NLS and pediatric emergency nursing. She shares the stories of women who had difficulty getting pregnant or maintaining pregnancies as a result of undiagnosed celiac disease and gluten sensitivity, and explains how a mass screening could work to prevent such intense suffering.

Listen to learn how adopting a gluten-free or Paleo diet can help women carry their babies to full-term and deliver healthy, thriving children!

What’s Discussed:

Nadine’s mission to get women tested for celiac disease prior to pregnancy

Allows to absorb nutrients during pregnancy (including prenatal vitamins)
Can deliver healthy, thriving child

The story of Alice Bast

Suffered miscarriage and still births
Multiple doctors couldn’t provide answers
Vet gave idea to test for celiac disease
Founded the National Foundation for Celiac Awareness

The necessity for a mass screening of men and women

Identify HLA-DQ2 and HLA-DQ8 gene carriers
Genes of both parents affect fetal health
Ratio of women to men with celiac disease is 1:1
Ratio of women to men diagnosed with celiac disease is 3:1

The increased risks for pregnant women with undiagnosed celiac disease

Miscarriage
Still birth
Low birth weight
Failure to thrive in children
Pre-eclampsia/eclampsia (dangerously high blood pressure)

The role men play in infertility

ED, low sperm count and low libido may be attributed to undiagnosed celiac disease
Symptoms include deficiencies in zinc, magnesium and B vitamins as well as anemia and osteoporosis

The argument that a mass screening for celiac disease is too expensive

The cost associated with undiagnosed celiac disease is much higher
Consists of medical costs from complications
Also includes decreased productivity and morbidity/mortality
Study published in Science Digest found that 42,000 children may die annually due to undiagnosed celiac disease

Conditions that indicate high risk for celiac disease

Chronic GI issues
Irritable bowel syndrome
Weight loss/gain
Iron deficiency anemia
Vitamin/mineral deficiencies
Secondary hyperparathyroidism
Unexplained elevations in liver function
Down, Turner or Williams syndrome
Type 1 diabetes
Lupus
Autoimmune thyroid disease

Sam’s story

Delayed puberty (didn’t get period until 17-years-old)
Diagnosed with celiac disease at 19
Doctors warned she would probably never have children
Raising two healthy boys

Why Nadine is concerned about the current generation of children

Higher rates of autoimmune diseases, cancer and learning disabilities

The appropriate diet to promote maternal health and proper fetal development

Gluten- and dairy-free
Paleo is best
Humans have enzymes to break down meat proteins
Humans do not have enzymes to break down grain proteins
Avoid wheat, barley, rye and oats
Embrace meat, fish, eggs, fruits, vegetables, nuts and seeds

Deficiencies that can be corrected to promote healthy pregnancy

B6 and B12
A, D, E and K (the fat-soluble vitamins)
Magnesium RBC
Zinc

The US maternal mortality rate compared to other developed nations

Rising in the US, declining in other developed nations
28 deaths for every 100,000 births in 2013, up from 23 in 2005

Resources:

“Maternal Mortality Rate in US Rises, Defying Global Trend, Study Finds” in The New York Times

“Focus on Infants During Childbirth Leaves US Moms in Danger” on NPR

Beyond Celiac: Alice Bast

“Reproductive Changes Associated with Celiac Disease” from the World Journal of Gastroenterology

“Celiac Disease and Reproductive Health” from Celiac Disease: A Comprehensive Review and Update

Connect with Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

Books by Nadine:

The Potential Connection Between Parkinson’s and Celiac Disease EP021

April 28, 2017

by Nadine Grzeskowiak, RN with 6 Comments Podcast

A diagnosis of Parkinson’s disease is devastating, and the associated symptoms – difficulty walking, tremors, memory issues – are debilitating. But what if those symptoms aren’t necessarily indicative of Parkinson’s after all? What if a simple diet change could improve or even eliminate those symptoms?

Today Nadine explores anecdotal evidence suggesting that the symptoms of Parkinson’s and other demyelination syndromes might be actually be caused by celiac disease or non-celiac gluten sensitivity. She argues that as Parkinson’s diagnoses become more and more common, it is imperative that we explore the potential connection between Parkinson’s and celiac disease.

Listen in to understand how gluten can affect the neurological system, why Parkinson’s patients should be tested for celiac disease, and how a gluten-free diet can heal neurological damage.

What’s Discussed:

Nadine’s Parkinson’s patient

Diagnosed with celiac disease as a child in the 1940’s
Recently diagnosed with Parkinson’s
Symptoms included difficulty walking, falling, stooped gait, masked appearance, tremors, memory issues and confusion
Discovered unintentional gluten exposure in the home
Moved to adult foster home to ensure gluten-free diet
Many symptoms went away
Working with neurologist to wean off Parkinson’s meds

Why patients diagnosed with Parkinson’s, ALS and MS should get test for celiac disease and gluten sensitivity

Every nerve in the body is insulated with myelin
Myelin is made of fat
Gluten prevents the absorption of fats
Parkinson’s, ALS and MS are all demyelination syndromes

The need for research regarding the potential connection between Parkinson’s and celiac disease

The University of Chicago asserts there is ‘no published evidence of a connection between Parkinson’s and celiac disease’
Nadine argues that enough anecdotal evidence exists to suggest that a connection should be investigated

Nadine’s recommendation for a comprehensive celiac lab test

Cyrex Labs tests for 25 of the gluten intolerant antibodies, including tTG-2, tTG-3 and tTG-6
Ask for a total IgA and IgG in addition to the Cyrex Array 3
Insurance should cover the tests
Can be ordered by any practitioner

Celiac diagnoses in patients over 60

30% of newly diagnosed celiac patients are over 60
Many have neurological issues
Neuropathy
Headaches
Migraines
Seizure disorders
Difficulty walking
Falling
Balance issues
MS
Nadine’s patients improve on a Paleo diet

The Stanford idiopathic familial narcolepsy study

Entire family diagnosed with narcolepsy
Found that family members had celiac disease
Adopting a gluten-free diet eliminated the narcolepsy
Family now runs organic farm

The increasing number of Parkinson’s diagnoses

More and more common
UK neurological expert routinely tests for celiac disease and non-celiac gluten sensitivity

How your body heals neurological damage in the absence of gluten

Heal intestines
Eliminate inflammation
Repair immune system
Replete nutrient deficiencies

Vitamin D

Cancer preventative
Level should be between 60-80
Indicator of all fat-soluble vitamins (A, D, E and K)
‘Sunshine’ vitamin synthesized through skin
Must also be taken in dietarily
Little chance of overdosing on D3

What your nails can tell you about your health

Look for white spots, cracked nails, hangnails
May indicate lack of zinc, D3, or B vitamins

Dr. Terry Wahls’ MS misdiagnosis

Diagnosed with MS and required wheelchair
Healed with a gluten-free diet
Can ride her bike and walk without a cane

Nadine’s story

At 40, her symptoms suggested MS
Issues with clumsiness (falling, dragging feet, dropping things, difficulty with balance)
Problems went away on a gluten-free diet
Nutrient deficiencies were causing neurological issues

Celiac cerebellar ataxia

Caused by lesions on or inflammation of the brain
Results in inability to walk straight
Tissue can be healed on a gluten free diet

Resources:

Cyrex Laboratories

Midway Farms

La Mancha Ranch and Orchard

Dr. Wahls’ TED Talk

Dr. Wahls’ YouTube Channel

The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles – by Terry Wahls, MD and Eve Adamson

Connect with Nadine:

Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism

Books by Nadine:

Celiac Disease and Gluten Sensitivity in Down, Turner and Williams Syndrome EP018

April 7, 2017

by Nadine Grzeskowiak, RN with No Comment Podcast

The medical community has an obligation to protect vulnerable populations, speaking up for any group that may not be able to advocate for themselves, and patients with Down, Turner, and Williams syndrome certainly fall into this category. Yet one facet of their health – one that could vastly improve quality of life – often goes overlooked.

There is a high prevalence of celiac disease among individuals with Down, Turner, and Williams syndrome, and it is recommended that these patients get tested annually. Unfortunately, many of the symptoms of celiac disease are attributed to the syndrome instead, and gluten sensitivity goes undiagnosed.

Today Nadine shares several case studies as well as her own experience working with patients with developmental delays. She covers the high incidence of celiac disease and non-celiac gluten sensitivity in Down, Turner, and Williams syndrome patients, the signs and symptoms of gluten damage, and the importance of annual screening in this population.

What’s Discussed:

The prevalence of celiac disease and non-celiac gluten sensitivity in individuals with Down, Tuner and Williams syndrome

Annual testing is recommended
Signs and symptoms can be eliminated with a gluten-free diet

Tiffany’s story

Williams syndrome patient
Suffered from stage 4 liver failure and diabetes
Endured cracked, bleeding skin and fluid in the abdomen
Tested positive for celiac disease
Gluten-free diet resolved most of her symptoms

Alternatives to the standard blood test that could reveal non-celiac gluten sensitivity in Down syndrome patients

The anti-gliadin antibody (AGA) is an excellent biomarker
In a study published in the World Journal of Gastroenterology, 41% of Down syndrome patients had AGA antibodies

The importance of testing family members

A mother who is malnourished during pregnancy may have a child with Down, Turner or Williams syndrome
Celiac disease may disrupt fetal development

The overlap of celiac disease and Down syndrome

Study found that 18 of 284 subjects ages two to 15 tested positive for celiac disease
In another study, 11 of 47 had positive blood tests

Symptoms of celiac disease and non-celiac gluten sensitivity

Diarrhea
Abdominal pain
Gas
Bloating
Constipation
Short stature
Brittle bones
Osteoporosis
Osteopenia
Thyroid issues
Anemia
Type 1 diabetes
Skin rash
Decreased appetite
Yeast overgrowth
Lichen planus
Difficulty swallowing

Nadine’s story of an autistic patient

Sweet gentleman who lived in group home
Suffered from diabetes, repeated infections and self-harm
Paleo diet made him calmer, didn’t irritate his throat
He enjoyed an improved quality of life

Cases of asymptomatic celiac disease in children with Down syndrome

Study published in the International Journal of Pediatrics
Toddlers screened at around 24 months
Biopsy proven celiac disease identified in 3-9% of children with Down syndrome
Not all patients with positive screens receive a biopsy if asymptomatic
One child in the study gained weight and energy on a gluten-free diet
A second child had less constipation and diarrhea
Follow-up study reported that 66% had health improvement

Resources Mentioned:

“Screening for Celiac Disease in Down’s Syndrome Patients Revealed Cases of Subtotal Villous Atrophy Without Typical for Celiac Disease HLA-DQ and Tissue Transglutaminase Antibodies” from the World Journal of Gastroenterology

“Prevalence of Celiac Disease in Down’s Syndrome” from the European Journal of Gastroenterology and Hepatology

“Asymptomatic Celiac Disease in Children with Trisomy 21 at 26 Months of Age or Less” from the International Journal of Pediatrics

Other Resources:

“Celiac Disease” from the Pediatric Gastroenterology Board Review Manual

“The Coexistence of Down Syndrome and a Triad Consisting of: Coeliac Disease, Insulin Dependent Diabetes Mellitus and Congenital Hypothyroidism” from Down Syndrome Research and Practice

“Coeliac Disease in Williams Syndrome” from the Journal of Medical Genetics

“Turner Syndrome and Celiac Disease: A Case-Control Study” from Pediatrics

Connect with Nadine: