New Info From the 2017 GF Education Day

On Sunday June 11,  I had the pleasure to attend and speak at the Washington DC Gluten Free Education Day again this year. Each year this great event is made possible by the Celiac Disease Program at Children’s National Medical Center. In addition, our bakers Emily and Jennifer did a cooking demonstration of our quick breads.  I spoke about the pitfalls of FALCPA (Food Allergen Labeling and Consumer Protection Act) and the GF Labeling Act and also gave some hints for easy weeknight meals.

This was a wonderful event for those who were newly diagnosed and those who are long time Celiacs got to learn what was new.  There were many activity sessions for children and so many well qualified speakers for adult sessions,  Unfortunately, I could not attend them all.  However, I was most impressed by the keynote presentation; The State of Celiac Disease- Current Research, Latest Advances and Mass Screening Protocols. Below are my notes from the session.

Dr Ivor Hill, Nationwide Celiac Disease Center Ohio; The Quintessential Autoimmune Disorder

-We know more about Celiac Disease than any other autoimmune disease! In 1888 Samuel Gee stated that diet would be the only cure. In 1950 William-Karel Dicke identified wheat, rye and barley as the problem.

-Factors in Celiac Disease are genetics, environmental factors, diet and other unknown triggers.

-Testing Recommendations are antibody blood testing, intestinal Biopsy and Genetic HLA Screening.

-Other grains that may be problematic for Celiacs are: Teff, Oats, Millet because they are in the same family! (Yup, they are a problem for me)

-Genetics; HLA and non HLA Genes found on chromosome 6, you can have DQ2 or DQ28 or both..they are necessary but not sufficient. There are many different versions of DQ2 and DQ8 genes with 40 different mutations associated. There is an autoimmune overlap.

-Trigger Factors; age, progression, prevalence, infections (rotovirus, adenovirus, stress, pregnancy and the Microbiome (lining of intestines) which is a trigger factor and is very different in those with Celiac.

-Research Treatments; Gluten Detox; grain modification is problematic due to the peptides in wheat. Glutenase; enzyme to relieve symptoms after gluten exposure is questionable because our stomach acid can destroy the enzyme.

-Peptide Transport Blockage; problematic…Lorazotide prevents opening of tight junctions in intestine that would let gluten in, but it only lasts about 90 minutes.

-Antibody Blockage or Nexvac 2 will only target those with gene HLA DQ 2.5.

-Future Research: He feels that the future will identify more genes involved in Celiac Disease. Right now half of all cases are cases of people who are asymptomatic.

Dr Edwin Lui, Colorado Children’s Hospital Celiac Disease Center; Is it Time for Mass Screening?

-Celiac Disease is not rare. Right now in the US the rate is 1.3%, Finland is 2% and Sweden is 3% (1984-1996 of all 12 year olds).

-Incidence of Celiac Disease is rising and more people are developing it.

-Who should we screen? Many have no symptoms. Those that are at risk are:

Those with: Type 1 Diabetes (3-12%), Autoimmune Thyroid Disease (7%), Liver Disease, Rheumatoid Arthritis, IgA Deficiency, Downs Syndrome, Turner Syndrome, Pancreatic Disease, Kidney Disease, Addison’s Disease, Parathyroid Disease, Growth Hormone Deficiency, Family History.

-40% of population is at risk of developing Celiac Disease because they have DQ2 or DQ8 genes.

-Following children in Denver study found that 3% developed Celiac by age 15 while 5% developed the antibodies.

Dr Benny Kerzner, Celiac Disease Program Children’s National Health, Wash, DC; Best Practices for Management of Celiac Disease

-Dr Snyder, Dr Liu, Dr Fasano, etc, got together to set guidance for physicians for the care of those with Celiac Disease. Here are a couple of interesting points that he made. Some of this is new information for many of us!

-Check newly diagnosed Celiac for Autoimmune Thyroid Disease, Liver (AST and ALT) and Hepatitis B. (30-70% of Celiacs are non responsive to the Hep B Vaccine if they got it before they started on GF Diet! So make sure you get this taken care of.)

-Vitamin Deficiencies usually correct on their own once following a strict GF Diet…so they don’t usually screen for them unless there are issues that warrant it.  The same for bone density, etc.

Children's National

 

 

 

 

 

“No sex, age, tissue or organs are spared from effects of Celiac Disease”

This is the #1 thing you should listen to if you or someone you love has Celiac Disease or Gluten Sensitivity. If you have people in your life or even one of your doctors who doubt the serious nature of it, have them listen too! (link at bottom)

2/27/17: Dr Allessio Fasano from the Center for Celiac Research is interviewed by Dr Theresa Nacassio on her radio show.

He talks about Celiac Disease, Gluten Sensitivity, the Microbiome, Leaky Gut, neurological complications in the brain and Autism, ADHD, Dimentia, Depression, Skin (Dermatitis Herpeteformis), Probiotics, Fecal Transplants and more!  He even talks about the Non-hybridized wheat myth, GMO’s, pesticides and more.

“No sex, age, tissue or organs are spared from the effects of Celiac Disease….”

The interview starts at  4min and 55 seconds on the timer in the link. You can fast forward through commercials too.  Dr Nacassio also has lots of other links to Dr Fasano’s interviews and talks on Celiac Disease up on her site.

Click Here

Vaccine for Celiac Disease

A vaccine for celiac disease is set to start clinical trials in Victoria, Australia in the next few months.  Nexvax2 is supposed to give those with celiac disease the ability to overcome their autoimmune response to gluten (the protein in wheat, rye and barley). It is thought that it will desensitize them to three peptides in gluten that actually trigger the autoimmune reaction. The US and Europe will also be participating in the larger phase two study which will assess how well it works. Wow, wouldn’t it be great?  I am not sure how long the trials will last or how long it will take to have any answers.

Source: celiac.com

vaccines

Drug Companies Clamor to Find a Pill for Celiac Disease

Until recently, drug companies did not pay attention to Celiac Disease or actively search for a cure in the form of a pill.  The reason for that is because many years ago it was thought that only children got Celiac and outgrew the condition.  Now with medical tests available to detect CD, there are many diagnosed (about 1% of the population). There are some drugs on the horizon which probably won’t be available until 2018; however the pill will not be enough to replace the gluten free diet, it appears to possibly prevent the damage to the intestines, but won’t allow a person with Celiac Disease to eat gluten again.

Click this link for the article in the NY Times….

http://www.nytimes.com/2015/04/29/business/celiac-diseases-prominence-has-drug-companies-racing-to-find-treatments.html?action=click&pgtype=Homepage&version=Moth-Visible&module=inside-nyt-region&region=inside-nyt-region&WT.nav=inside-nyt-region&_r=1

A Cure for Celiac Disease and Autoimmune Disorders; Dr Fasano sheds some light on this.

Heather Jacobsen of Stuffed Pepper recently interviewed Doctor Fasano about a possible cure, pill or vaccine for Celiac Disease and other autoimmune disorders.  This is absolutely one of the best interviews I have seen and the best information on the subjects to date.  I highly urge anyone with Celiac Disease, Gluten Sensitivity, Autism, Leaky Gut, Dementia, Alzheimer’s, Diabetes or any autoimmune disease (or anyone who knows someone with any of the above) to read this interview by clicking on the link at the bottom of the post.  In this interview, she covers:

-Vaccine for Celiac Disease?

-Leaky Gut, Inflammation and it’s role in Celiac and Autoimmune Diseases ( and diseases affecting the brain, etc)

-Trial Drugs

-Zonulin

-Gluten Free Diet, Grain Free Diet and Non-Responsive Celiac Disease

https://www.stuffed-pepper.com/a-cure-for-celiac-disease-and-other-autoimmune-disorders-interview-with-dr-alessio-fasano/