I was gluten free for 10 months already when I decided to do a gluten challenge. Why did I go gluten free without testing for celiac disease? Well, I just never thought that there was any possibility that I might have it.
I just googled celiac disease, found a superficial article naming the top 7 symptoms and I thought, no I definitely don’t have it. At that point I barely knew anything about celiac disease and I didn’t know about all my symptoms that I was actually having, it took some time to recognize them all. First I thought it was just a mild gluten sensitivity, but later I found out I couldn’t just go back to half a breaded chicken schnitzel, it was followed by horrible brain fog the next day. I was convinced I had just leaky gut, which can be caused by gluten, and then can lead to the body reacting to gluten. I was discovering more and more of my food allergens and also suffering from IBS and doing a foodmap challenge, so I could eliminate everything that wasn’t good for me. Later on during celiac awareness week I saw so much information on Instagram, so many things I didn’t know before and I learned about the many many symptoms of celiac disease, that was when I knew I might actually have it, as I already knew gluten was a bigger problem for me than I ever thought was possible. As time went by and I did more research on celiac disease I came to the conclusion, that my chances of having it was 50/50. And more and more I was looking for answers, wanting to know what’s wrong with me.
So before my gluten challenge I was actually still eating foods with may contain gluten as well as gluten containing oat milk for coffee and tea, as I hadn’t found a proper gluten free one that would work with coffee and tea. But during that time I realized that the gluten in the oat milk was making me sick, another reason why I wanted to find out if I had celiac disease, it became more and more probable.
It was hard to get trough the gluten challenge but I had committed to doing it and I wanted to know if it could actually be celiac disease. Had I been a 100% gluten free before the challenge, I think it would have been impossible for me to do it, as the less gluten you eat the worse the reactions get, if I ate just one gluten meal now I would end up with the worst stomach pain, diarrhea, headache etc. and would be in bed for a week not being able to do anything. With those stomach pains I couldn’t have had another gluten meal on day two… Even drinking water would hurt so much, herbal tea was working better and I could barely eat anything but rice cakes.
I couldn’t wait for the time to end, the 4 weeks seemed to take forever, and I was so glad when it was over, I would still feel very sick for at lest 2 weeks after, and slightly sick for the months to come. Waiting for the result, being afraid of the result was hard. But finally about a week later I saw the result and surprisingly it was negative! By the end of the test I really thought it would come back positive, but it didn’t, my result said negative! So I thought as the result was only 70% accurate, maybe I have it, maybe I don’t.
Later I found out that I had dermatitis herpetiformis, therefore it was very likely that I have celiac disease, as the condition only occurs together with celiac disease. So I looked up my test results again, checked the numbers and did some research, only to find out my results had been misinterpreted and were actually positive for celiac disease! Now I had finally the answer I was looking for, I now knew what was wrong with my body, I could explain better to people what is wrong with me, explain the importance of avoiding cross contamination, even if it’s still difficult to explain to people.
It was not a shock to me that I was celiac, I had been gluten free already for a year or so, therefore nothing else changed for me, celiac or not, I already knew I reacted to trace amounts of gluten.
Full gluten recovery takes up to 24 months!!! I used to think it was 6 to 12, but 24 seems more like it as the gluten did quite some damage in the 26 years before diagnosis! Recovery from gluten is a very slow process, it slowly gets better day by day, overall after more than 6 months I feel like slowly getting back to normal, I didn’t expect it to go this slow. At the same time I regularly suffer with IBS issues, which I’m still trying to handle, need to cut broccoli and avocado, both high in fodmaps and causing me bloating and gas. Often one autoimmune disease doesn’t come alone, often you will get another one, just like having not just celiac disease, but also IBS and multiple food intolerances, those are the secondary effects of celiac disease, most like caused by the long time without diagnosis, in which gluten can do quite a bit of damage to the body, especially the small intestine.
So don’t go gluten free before getting tested for celiac disease! Celiac awareness is so important, most people just don’t know about it, that’s why 80% of celiacs never get diagnosed.
Getting the answer I was looking for made it all worth it, now I can put the right label on it. I have celiac disease. It’s not, maybe I have it, maybe not, but now I know I definitely have it!
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