Describe your life prior to diagnosis:
Since March of 2017, I had been training for half Ironman triathlon races. I picked up long distance sports in April 2016, like half and full marathons, and I also started to love long-distance cycling, too, like 100-200 km long rides. Everything was going smoothly, and I even set a serious goal that one day I would finish a triathlon on the podium.
How did you find out that you had celiac disease? Did you suspect it beforehand?
Around February of 2018, I started getting GI symptoms each evening, like bloating. I even had some sort of allergic reaction on my skin, so I started visiting local doctors to figure out what was going on with me. Many of them simply gave me medications, but the issues kept growing day by day.
If you were diagnosed, who made the diagnosis?
I visited a big hospital outside my state and I asked doctors what was going on with me, explaining my symptoms. At first the doctor was like, “Son, you are thinking about this and it’s all because of your mentality.” I got so frustrated, and then he finally requested a test for celiac disease: tTG-IgA.
The test result came back positive with a reading of 282. I then underwent an endoscopy, and they took a sample from my small intestine. Turns out it was completely smooth, like just less than 10% villi was left to absorb nutrients.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
It took me 4 months to finally figure out what was going on. I noticed the first symptoms in February of 2018 and then I was diagnosed at the end of May 2018.
Challenges were things bloating, a bit of constipation, and an angry mood. It all tended to happen in the evening and then, after March, in the mornings too.
Do you believe anything could have sped up your diagnosis? If so, please explain:
Yes, I believe that I wasted time around my local doctors. Instead I should have visited a big hospital earlier, but even then sometimes experienced doctors can’t find the true reasons. So I think it was bad luck of four months.
Describe your experience living with celiac disease:
From August of 2018 to this day (May 2023), I have been completely gluten-free, except those times when I experience cross-contact, which we all experience when we start our gluten-free journey or sometimes when traveling. But I never willingly think about the gluten meals that I previously ate. I’ve always been very disciplined and strict about my diet, even before celiac disease, because I am an athlete; I am still the same long distance athlete, just gluten-free.
By December 2019, I recovered from all the villi damage. Afterward, I had some ups and downs about every 7-10 weeks for like 5-8 days, but every time I get down I find courage because I know there are so many other athletes who are dealing with things like being a double knee amputee or having spinal cord issues. Compared to what they overcome in their day-to-day lives, my problems are not even 1% of that, so I always find courage. I will keep going no matter what.
Last year in October, I finished my first official half Ironman race, a 600 km BRM cycling race, and many more races. This year I finished the Delhi Marathon with 04:30:00, and next month I am going for a cycling project which is 2000 km long.
I share my journeys on Instagram at @triwithashi
What would a cure mean for you?
I only want a cure because sometimes when I am traveling for races, I get frustrated thinking about how I am going to have to manage it. But now that I have some experience, I know I find solutions every time. But still, I want a cure for this.
