AI-Powered Awareness: My Celiac Story Spiced Up with Machine Learning- part 1
- Serah Rashidi (She/Her)
- May 25
- 5 min read
Updated: May 26
Hey Techies ! Nice to see you jumping in again., Our blog for today is unique, blending tech and healthcare, showing you once again that technology is at the heart of everything we do whether it’s building apps, breaking down barriers, or even taking on diseases like Celiac.
In fact May, is Celiac Disease Awareness Month, and I’m bringing both my techie brain and my personal story to the table.
So buckle up. Whether you’re a fellow Celiac , a curious coder, or just love seeing tech make a difference, today's blog for you.
What is Celiac Disease (CD) ?
CD is not simply an allergy, a dietary preference, nor a trend. It is a chronic, autoimmune condition in which the body’s immune system mistakenly targets gluten, a protein found in wheat, barley, and rye [1] as a harmful intruder.
This misguided attack leads to damage of the small intestine’s lining, impairing nutrient absorption and causing widespread symptoms [2].
With over 250 recognized symptoms, CD affects much more than just the digestive system. It can manifest through fatigue, anemia, bone issues, neurological symptoms, and even skin conditions [3].
In many regions, it is recognized as a disability, due to it's impact on daily life and long-term health. In the United States, CD qualifies as a disability under the Americans with Disabilities Act (ADA), especially after the 2008 amendments that expanded the definition of disability to include major bodily functions like the digestive system [4].
Globally, other countries such as Argentina have enacted national policies to protect individuals with Celiac disease, including mandated gluten-free labeling and financial support for gluten-free products [5].
How My Journey Started
It took almost 10 years for anyone to take my symptoms seriously. For most of that time, it was always the same story: “It’s just something you ate”. Back then, medicine wasn’t what it is now, and no one was thinking about Celiac disease.
I still remember my 10th birthday. I was so excited for my vanilla-chocolate cake with those little flakes on top. It was perfect, until it wasn’t. That evening, things went downhill fast.
The next morning, I was in the hospital, where I spent two weeks... No answers, no clues.
Months later, finally, a french Professor diagnosed me with CD via an endoscopy. I was 11, almost turning 12. I weighed only 21 kilograms, skin and bones, suffering from severe malnutrition. Turns out, I had the HLA-DQ2/DQ8 Celiac Genes, and they were triggered when I turned 10.
Before then, I was healthy, thriving, just like any other kid my age. But after that, it was like a switch flipped. And here’s the crazy part while around 25% of people carry those genes, only about 1% actually develop Celiac Disease. Crazy, right?
Living with Celiac Disease
After my diagnosis, I went all in on a strict organic gluten-free diet. Back then in Lebanon, gluten-free products were scarce.
Slowly, things started looking up. But then, as processed gluten-free products started hitting the market, my symptoms came back. For eight years, I kept getting sick, despite doing everything right.
Turns out, a lot of products were falsely labeled as gluten-free or had cross- contamination. The slightest particle caused severe symptoms. In fact, did you know that just one particle of gluten can stay in your system for two weeks?
And after years of cross-contamination and accidental gluten exposure, I developed complications such as SVT, POTS, IBS, GERD and at one point, I even lost my ability to swallow back in fall 2023.
I wasn’t aware of contamination and false labeling , people around me weren’t either. It’s through my long and painful journey had I learned the hard way.
Celiac Disease Awareness
Personally, May, Celiac Disease Awareness Month, matters so much. It’s a chance to educate others, raise awareness, share my story and maybe just maybe, prevent someone else from going through what I did.
And with the incredible advances in Tech and AI, raising awareness have become faster and easier. And Today we're tackling a 2 part series Blog on building a CD predictive Model
What is Predictive Model?
To answer that Let's first start with some how a bigger bubble, Machine Learning (ML). ML is a branch of artificial intelligence (AI) that usually allows computers to learn from data and improve their performance over time without traditional deterministic programming. It's teaching your computer to recognize patterns and make decisions based on data, much like how us humans learn from experience [6].
Predictive modeling specifically uses historical data to predict future outcomes also known as a statistical technique. Much like giving your computer a crystal ball powered by data. By analyzing patterns in existing data, predictive models can forecast future events, such as disease onset, customer behavior, or equipment failures [7]. In our case, we’re building a predictive model trained on previous celiac disease data
Building a Predictive Model for Celiac Disease Detection
While approaches may differ, this is usually the flow when building a predictive model for Celiac disease detection. So here’s a quick breakdown for you techies:
Define the Problem: predicting celiac disease likelihood from symptoms or genetics.
Data Collection: gather reliable data (symptoms, test results, genetic info).
Data Preprocessing: Clean and prepare the data for analysis.
Feature Selection : Pick the most relevant features.
Model Development : train a machine learning model.
Model Evaluation : test the model’s performance.
Deployment : make the model usable for real-world scenarios.
Monitoring: continuously improve the model with new data.
Stay Tuned for Blog 2!
In the next blog, we’ll dive deeper into the technical side of our CD predictive model with data cleaning, algorithm choices, model evaluation, and all that good stuff.
But before we get there, I need your input. If you have Celiac Disease, a gluten intolerance, or even just an allergy, take a moment to fill out this Google Form :https://forms.gle/hCL51oqz1HFfkGsY8
Your input will help me make this model smarter and more accurate! And do stay tuned for Blog 2, where we’ll take this from theory to action.
References
[1] Fasano, A., & Catassi, C. (2012). Celiac disease. New England Journal of Medicine, 367(25), 2419-2426.
[2] Lebwohl, B., Sanders, D. S., & Green, P. H. R. (2018). Coeliac disease. The Lancet, 391(10115), 70-81.
[3] Ludvigsson, J. F., Leffler, D. A., Bai, J. C., et al. (2013). The Oslo definitions for coeliac disease and related terms. Gut, 62(1), 43-52.
[4] Verywell Health. (2024). ADA and celiac disease: Understanding your rights. Retrieved from https://www.verywellhealth.com/ada-and-celiac-disease-563100
[5] Celiac.org. (2024). Celiac disease global associations and policies. Retrieved from https://celiac.org/gluten-free-living/global-associations-and-policies/policies-around-the-world
[6] IBM. (n.d.). What is machine learning?. Retrieved from https://www.ibm.com/think/topics/machine-learningIBM
[7] TechTarget. (n.d.). What is predictive modeling?. Retrieved from https://www.techtarget.com/searchenterpriseai/definition/predictive-modeling
And with that, we reach the end of the blog. I hope you had a good read and learned a lot. Stay tuned as we'll cover more tech-related topics in future blogs .
Incase of any questions or suggestions, feel free to reach out to me via LinkedIn . I'm always open to fruitful discussions.🍏🦜
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