photo of wheat field with at home celiac research study words

New At-Home Research Study Aims To Make Diagnosing Celiac Disease Easier and Less Invasive

A new at-home study is being conducted by Adaptive Biotech & The Celiac Disease Foundation. This at-home study will collect blood samples from people who have a Celiac Disease diagnosis or who suspect they have Celiac Disease. 

If you’ve ever been through the lengthy process of Celiac testing, you know it’s invasive and painful.

For those of you who don’t know, Celiac diagnosing involves a blood draw and an endoscopy.  The person has to ingest gluten for the results to be accurate.  Eating gluten (for someone who is Celiac or intolerant) can be just as painful as the biopsy.

But, there’s possibly hope on the horizon for quickly and simply diagnosing Celiac Disease (and other diseases like Type I Diabetes, Lyme disease, Pancreatic and Ovarian Cancer). 

Adaptive Biotech is mapping the immune system to develop a new diagnostic test.  This test will be able to detect multiple diseases that were previously difficult to diagnose.  In one blood test, a person could determine if they have Celiac Disease. This would make their return to health much faster than having to wait years trying to figure out what’s wrong. 

In order to validate the technology they’ve developed, blood samples are needed from people with a Celiac Disease diagnosis or who suspect they have Celiac Disease.

If you qualify and want to take part, a trained professional comes to your house and draws your blood. It takes 35-45 minutes. You will be compensated $50 for your time – and you’ll have the joy of knowing you’ve helped change the future of Celiac diagnosing.

How To Know If You Can Participate

This research study just began.  It’s available to people ages 18-65, living in these areas:

  • San Diego
  • Los Angeles
  • San Francisco Bay Area
  • Seattle
  • Massachussetts
  • New York

I know we have many Red Apple Lipstick customers with Celiac Disease living in those areas – so if you’re one of them, here’s what you do.

  1. Go to: https://adaptive.celiac.org/#about
  2. Click on “See If You Qualify”
  3. Register yourself (this is celiac.org, so it’s obviously highly trusted – took me 30 secs)
  4. Click “Start” under At-Home Celiac Disease Study Survey
  5. Read the information about the study and check the box to agree – they wrote this easy to understand and are transparent about who to contact if you have questions, the details about the study, and your consent or withdrawal.
  6. Fill out the questionnaire (took me less than 2 minutes)
  7. Check your email to find out if you qualify

What Is This Study All About?

Ultimate Goal: Develop a new diagnostic test for Celiac Disease that may not require gluten ingestion or a biopsy to confirm the diagnosis. (This is HUGE!)

How are they going to do that: By decoding the human immune system which is nature’s most accurate diagnostic system. Our bodies are amazing – these researchers are figuring out how to use it to our advantage.

What Does Decoding Mean: Understanding the relationship between a T-Cell and the pathogen it is targeted to attack.  There are millions of T-Cells and millions of pathogens. They are making a map of each one. This map will then allow doctors, clinicians, and labs to see what one person’s immune system (where T-Cells live) has fought or is currently fighting.

What Is A T-Cell: A type of white blood cell that is crucial to our immune system. The human body adapts its immune response to different pathogens (any invader that produces disease). The T-Cell is the main fighter for our adaptive immune system. It searches out and destroys targeted invaders.

By mapping the millions of T-Cells and millions of pathogens that they destroy – these researchers will have a precise and efficient diagnostic tool to use for all diseases.

Who Is Conducting This Research: Adaptive Biotechnologies has partnered with Microsoft Healthcare NExT Initiative. Obviously this process requires incredible technology which includes proprietary computational modeling, machine learning and immune sequencing.

Who Does This Benefit: All of us. There’s a bigger development here, and that is the early detection of many diseases from one blood test.

Why Is This So Important:
Celiac Disease is a prime example, and one you’re probably familiar with, so let’s use it as our example.

Just 10 years ago (when we started helping women with Celiac Disease be able to wear makeup again  – “Celiac” was almost unheard of. Doctors lumped it into the section of diseases that were highly unlikely, if not bogus.

So, people (maybe even you) went for years not knowing what was wrong – why they felt awful all the time…bloating, headaches, brain fog, joint pain, digestive distress (i’m putting this lightly), exhaustion, severe weight loss, etc.

Meanwhile, trying to deal with normal life, while constantly searching for a new doctor, a different type of clinic, answers…anywhere to figure out what could be going on with their body.

Test after test, searching and waiting for answers.  Could it be Chron’s Disease? Could it be Sjogren’s Syndrome? Could it be thyroid issues? Am I lactose intolerant? Ack – what is wrong with these doctors that they can’t figure this out! Being told to try this medicine, or this supplement – all the while not getting any relief and trying to do life at the same time.

This is exhausting and frustrating – and for some, depressing – which is totally understandable!

Then after years…they are diagnosed with Celiac Disease. And everything they’ve been eating and drinking for years has to abruptly come to a halt. 

What are the current statistics for Celiac Disease Diagnosing?

  • It takes the average Celiac patient 6-10 years to get diagnosed (that’s current data).
  • 1 in 133 Americans has Celiac Disease – i.e. 1% of the population
  • 83% of Americans with Celiac Disease are undiagnosed or misdiagnosed
  • Put another way, about 3 million people in America have Celiac Disease and 83% of those people are not diagnosed (but living with the above symptoms)
  • Over a 4-year period, people with undiagnosed celiac disease cost an average of $3,964 more than healthy people
  • 5-22% of people with Celiac have an immediate family member who also has celiac
INFORGRAPHIC - Celiac Stats

The Problem With Going Undiagnosed:

Celiac Disease is a serious auto-immune disease that people are genetically predisposed to. It’s crucial that diagnosing happens as early as possible.  Anytime someone with Celiac Disease ingests/absorbs gluten, their body has an immune response that attacks their small intestine.

The undiagnosed person keeps eating gluten over and over (because they don’t know they shouldn’t)…and these attacks continue, which damages the villi lining the small intestine.

These villi are amazing little fingers that reach out and absorb the nutrients we ingest. When they are damaged, they don’t properly absorb nutrients into the body.

This process continues in the un/misdiagnosed person for years, meanwhile their villi are becoming secretly and severely damaged. This leads to many other problems.

Other conditions that could have been avoided by an earlier diagnosis (and then a strict adherence to a gluten free diet and personal care routine) are:

  • Autoimmune thyroid disease
  • Chron’s Disease
  • Sjogren’s Syndrome
  • Colitis
  • Anemia
  • Unexplained infertility & Miscarriage

  • Liver disease
  • Chronic Fatigue Syndrome
  • Lactose Intolerance
  • Gall Bladder Malfunction
  • Early Onset Osteoporosis and Osteopenia
  • Vitamin and Mineral Deficiencies

Does Age Matter When Getting Diagnosed With Celiac Disease?

Absolutely it does. The younger a person gets a diagnosis, the smaller their chance of developing another condition. The older someone is (i.e. the longer they’ve had damage to their villi) the more prone to developing another condition they are.

Early Detection with a simple diagnostic test will lead to fewer people with multiple auto-immune diseases.

“I’d rather see this type of medical advancement in celiac disease instead of a magic pill which may or may not allow us to eat gluten.”

Possible Negative Consequences

According to the FAQs you will not receive any results, nor will the results be given to your doctor or put in your medical record. Which makes sense, if you are volunteering to be in a research study and compensated for your time.

Your Health Information cannot be totally guaranteed confidential.  They say “every effort will be made to ensure confidentiality of Protected Health Information (PHI) in accordance with HIPAA. There is a risk that your information will be given to others without your permission.”

It’s a bit vague on what this specific “risk” is and how your info would get out.  They say it could be a government agency or staff member reviewing things are done safely and legally. This is one of a few possibilities of your information being given without your consent.

A trusted voice in the gluten free community, Gluten Dude, shared with me that “they don’t seem very confident they can protect your results and/or your data. Companies like 23andme make a chunk of their money by selling their client’s data to drug companies…I’m all for science and advancement in medicine, I’ve just become so skeptical of our system and reasoning behind why a company might be doing this.”

My optimism says that I want to believe they are in this for the good of scientific advancement and helping humanity.  There is a bit of vagueness here that makes me slightly skeptical. However, they make it very clear that you can reach out to their offices, the research doctor, and the research assistant (providing all the contact info).

If providing your health information for the sake of research concerns you – read their FAQs here. And certainly call or email if you have detailed questions they don’t answer. I called both the Celiac Disease Foundation and Dr. Dines to ask questions and am currently waiting on a return call.  Looking forward to speaking with them soon.

What Has Been Your Experience With Celiac Diagnostics?

I have spoken with 1000’s of women over the last 10 years and heard so many stories about struggles with diagnosing and finding the right doctor. So, I’m incredibly curious about your opinion on this whole research study. The impact it could have on our community and the health of America. 

Do you think this research is paving the way to a healthier future generation? 

Are you skeptical of the motivations behind it? 

Do you plan on participating in this at-home research study?

Tell me all.the.things. in the comments below! 

*Celiac Disease Foundation for all sources 

2 thoughts on “New At-Home Research Study Aims To Make Diagnosing Celiac Disease Easier and Less Invasive”

  1. Add Your Picture

    I believe this study would enable celiacs like myself to wear lipstick again. No I am not skeptical. Yes I would like to participate in this study.

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