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Russia and Celiac Disease EP065

As stories about Russia continue to dominate the news cycle, you are probably familiar with the recent sanctions against the country, Vladimir Putin’s reelection, and even the expulsion of Russian diplomats from the EU and US. But what do you know about celiac disease in Russia?

The Gluten Free RN is taking a closer look at the limited information about celiac disease in Russia, giving us an overview of the country’s size and population and the likely number of celiac cases based on the global tendency. She discusses the thriving wheat production industry in Russia as well as the gluten-containing traditional Russian diet.

Nadine walks us through a presentation created by Dr. Elena Roslavtseva at the Scientific Center for Children’s Health in Moscow, sharing how the diagnoses of celiac disease changed from the 1970’s through the 2000’s, the inconsistencies with testing for celiac disease around the nation, and the challenges of maintaining a gluten-free diet in Russia. Listen in as the Gluten Free RN covers the Journal of Immunology Research’s overview of celiac disease in Russia, explaining why the reported frequency probably doesn’t reflect the true prevalence and the necessity of a mass screening.

What’s Discussed: 

General information about the country of Russia

  • Population of 144.3M
  • Dual nation state, 185 ethnic groups
  • Largest country by land mass

Russia’s thriving wheat production industry

  • Very high, exported to Middle East and Africa
  • Ban on genetically modified wheat

The first diagnoses of celiac disease in Russia

  • Late 1970’s—1980’s
  • Cases of severe malabsorption
  • No gluten-free foods available

How celiac diagnoses changed in the 2000’s

  • Diagnosed more often, well-known in most regions
  • Research done in many universities, med centers

The Eastern European countries that have done mass screenings

  • Romania, Slovakia, Slovenia, Estonia

Why the data around celiac disease in Russia is unreliable

  • Variation in how practitioners test for celiac disease
  • Belarus—HLA-typing not available in most cases
  • Latvia—mandatory screening for patients with IDDM and AIT

The problems associated with celiac disease in Russia

  • Unreliable data in absence of mass screening
  • Gluten-containing traditional Russian food

The overview presented in the Journal of Immunology Research

  • Diagnostic tools for celiac disease in Russia vary significantly
  • Reported frequency of 0.2-0.6%, but real rate unknown

Resources:

‘Coeliac Disease and Gluten Related Disorders in Russia and Former Soviet Republics’ by Dr. Elena Roslavtseva

‘Overview of Celiac Disease in Russia: Regional Data and Estimated Prevalence’ in the Journal of Immunology Research

‘Russia, Argentina and Canada Displace US, Europe in Global Wheat Trade’ in agriCENSUS

‘Russian Wheat Sales Expand Global Reach with Surge in Sudan’ in Bloomberg

‘Russia’s Wheat Industry: Implications for Australia’ from the Australian Export Grains Innovation Centre

‘Growing Importance of Russian Milling Wheat Worldwide’ from Solaris Commodities

‘How an Oil Giant (Russia) Came to Dominate Wheat’ in Bloomberg

‘Celiac Disease in Russia and the Former Soviet Republics’ in The Celiac Scene

Connect with Nadine:

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Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

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Review of Colombia University Celiac Disease Conference 2018 EP064

When faced with new information, it’s important to consider the source. Stop for a moment and examine whether the material is coming from someone with YOUR best interests at heart. The Gluten Free RN has just returned from the Colombia University Celiac Disease Conference, and she is breaking down the information presented to determine what’s useful—and what might be tainted by the pharmaceutical or food industry agenda.

Nadine begins with a workshop led by General Mills that offered some questionable information about how grains are processed at their factories and a talk led by University of Chicago faculty on the topic of a gluten challenge. She also speaks to the differences between celiac management in the US and countries with universal healthcare like Italy and Australia.

Nadine covers new testing that detects gluten exposure in stool or urine and what that reveals about the systemic nature of gluten damage as well as her take on practitioners who perpetuate the myth that grains are necessary and nutritious. Listen in for the Gluten Free RN’s insight around pharmaceutical treatments for celiac disease and the danger in volunteering for studies backed by drug companies.

What’s Discussed:

The two programs available at Colombia’s 2018 conference

  • Clinical (nurses, RDs and laypeople)
  • International (doctors, scientists, industry and VC)

How celiac disease is managed in Italy

  • Presentation by Dr. Carolina Ciacci
  • Law mandates gluten-free options

Nadine’s frustration with the General Mills presentation

  • Major sponsor of conference
  • Claim to separate grains at factory

Nadine’s take on gluten-free Cheerios

  • Should be avoided, not truly gluten-free

Nadine’s confusion around Dr. Bana Jabri’s comments

  • Wouldn’t put ‘potential celiac patient’ on gluten-containing diet
  • Did not include patients with positive antibody test but negative biopsy

Why the biopsy for celiac disease is problematic

  • Only tests one foot into duodenum
  • GI tract is 30 feet in length

Nadine’s insight on a gluten-free challenge

  • No possible benefit for patient
  • Unnecessary, unethical

The systemic nature of gluten damage

  • New tests detect gluten exposure in stool, urine
  • Urine test indicates passage through every system

Nadine’s stance on pharmaceutical treatments for celiac disease

  • No pill or vaccine will treat or cure CD
  • Harmful to people in studies

The myth that grains are necessary and nutritious

  • Practitioners who perpetuate are ‘toeing company line’

Why it’s important to understand the source of your information

  • Should be untainted by pharmaceutical money, agenda

Australia’s requirements for gluten-free food

  • Standard of less than 3 ppm

Resources:

Celiac Symposium Program

Connect with Nadine:

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

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Poland and Celiac Disease EP063

To pierogi or not to pierogi…

If you have celiac disease, there is no question that you should avoid anything made with flour or grains, no matter how delicious the dish may be. Although the Gluten Free RN has fond memories of her Polish grandmothers making traditional pastries, she contends that you don’t have to eat customary Polish food to celebrate your Polish heritage.

In preparation for her upcoming trip to Warsaw in July, Nadine is taking a closer look at celiac disease in Poland. She discusses a 2009 study assessing the prevalence of celiac disease in Polish children, highlighting the asymptomatic and oligosymptomatic nature of the disease and explaining her own false negative test. Listen in for the Gluten Free RN’s insight around preparing for a trip to Poland, including research on the available gluten-free food and adult beverages!

What’s Discussed:

Why Nadine is concerned about her upcoming trip to Poland

  • Flour, grains used in cooking and baking

Nadine’s Polish heritage

  • Fond memories of grandmothers making pierogi, pastries

The 2009 study of celiac disease in Poland

  • Assessed prevalence in children, only screened for IgA EmA, IgG EmA
  • 3,235 children in Bydgoszcz tested, 25 identified (seven with Marsh III)
  • Predominantly asymptomatic or oligosymptomatic

Nadine’s genetic predisposition for celiac disease

  • HLA-DQ2.5 homozygous

How Nadine is preparing for travel in Poland

  • Aware of Polish translations for gluten-free, celiac (bezglutenowe, trzewny)
  • Take ‘rescue food’ for emergencies

The prevalence of celiac disease in Poland

  • 1:100 (matches worldwide estimate)

The gluten-free alcoholic beverages available in Poland

  • Potato vodka, honey mead

Nadine’s caution against eating bread in Europe

  • Wheat, grain causes damage regardless of location

The overlap between autoimmune and celiac disease

  • CD is grossly unrecognized, underdiagnosed

Nadine’s suggested diet for celiac patients

  • Meat, fish and eggs
  • Nuts and seeds
  • Fruits and vegetables

Resources:

NIH Consensus Development Conference on Celiac Disease

‘Screening for Celiac Disease in Poland’ in the Medical Science Monitor

Gluten-Free Globetrotter Blog on Poland

Gluten-Free Travel in Poland—Coeliac Youth of Europe

Poland Travel Guide—Coeliac UK

‘Graves’ Disease, Celiac Disease and Liver Function Abnormalities in a Patient—Clinical Manifestation and Diagnostic Difficulties’ in ACTA Biochimica Polonica

‘Neuropsychiatric Symptoms and Celiac Disease’ in Neuropsychiatric Disease and Treatment

‘Evaluation of HLA-DQ2/DQ8 Genotype in Patients with Celiac Disease Hospitalised in 2012 at the Department of Paediatrics’ in Przeglad Gastroenterologiczny

For Visitors with Coeliac Disease—Polskie Stowarzyszenie Osob z Celiakia i na Diecie Bezglutenowej

Connect with Nadine:

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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

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The Irish and Celiac Disease EP062

The Irish are known for being lucky… But does that luck hold out when it comes to celiac disease?

The prevalence of celiac disease among the Iris is 1:100, about the same as the rest of the world. And if you are a redhead of Irish descent, there is a good chance that you are an HLA-DQ2 or HLA-DQ8 gene carrier.

Today, the Gluten Free RN explores Irish ancestry and celiac disease, discussing how the Potato Famine led to a change in diet for much of the surviving population. She walks us through a paper published by Irish College of General Practitioners explaining the clinical presentations and complications of celiac disease.

Nadine shares her experience running the Dublin marathon and the health consequences she suffered after touring the Guinness brewery. Listen in to understand the work of the Coeliac Society of Ireland and learn about the trends in celiac disease among the Irish.

What’s Discussed: 

Why red hair is associated with celiac disease

  • Tend to be HLA-DQ2 and/or HLA-DQ8 gene carriers

The prevalence of celiac disease in Irish Setters

  • Do much better on a gluten-free/Paleo diet

The Irish Potato Famine

  • Potato-based diet, little access to grains
  • Famine from 1845-1849
  • One million died, many emigrated

The myth that celiac disease is more prevalent in Europe than the US

  • 30-50% of the population carries HLA-DQ2, HLA-DQ8 gene

The myth that women are more susceptible to celiac disease

  • Statistics don’t support this belief

The Irish College of General Practitioners paper on celiac disease

  • Clinical presentations, complications of celiac disease
  • Conditions associated with increased prevalence

The prevalence of celiac disease in Ireland

  • 1:100 (matches rest of world)

The appropriate testing for celiac disease and NCGS

  • Blood test for total IgA/IgG, DGP and AGA

Nadine’s experience running the Dublin marathon in 1998

  • Extreme edema in lower extremities

The information provided by the Coeliac Society of Ireland

  • Health ramifications of undiagnosed CD
  • Average duration from symptoms to diagnosis (nine months)

Resources:

‘Gluten-Sensitive Enteropathy in a Family of Irish Setters’ in The Canadian Veterinary Journal

‘Diagnosis and Management of Adult Coeliac Disease’ in ICGP

Coeliac Society of Ireland

‘Prevalence and Incidence of Celiac Disease in Edinburgh and the Lothian Region of Scotland’ in Gastroenterology

‘Prevalence and Diagnosis’ by the Coeliac Society of Ireland

‘Coeliac Disease in Europe’ in Alimentary Pharmacology & Therapeutics

‘Escalation in the Amount of Adults Diagnosed with Coeliac Disease’ in Lifestyle Health

‘Gluten-Free Foods’ by the Food Safety Authority of Ireland

‘How Irish Diets of the Past Affect the Present’ in The Irish Times

‘Changes in Presentation of Celiac Disease in Ireland from the 1960s to 2015’ in Clinical Gastroenterology and Hepatology

‘Coeliac Disease: A Personal Perspective’ in Irish Health

‘Coeliac Disease: More Common Than You Think in Irish Health

‘Pathology and Management of Coeliac Disease’ by the Dublin Academic Medical Centre & UCD

Connect with Nadine:

Instagram

Facebook

Contact via Email

‘Your Skin on Gluten’ on YouTube

Melodies of the Danube Gluten-Free Cruise with Nadine

Books by Nadine:

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