Monday, August 15, 2016

My Gluten-Free Story

This is something I've been meaning to share for a while, but I wanted to wait until I had a little more experience in the matter.

About a year ago, June 2015 to be precise, I got a blood test result that suggested I have celiac's disease. It all started when I told my boss (who is a doctor, by the way), that I have a long history of iron deficiency and anemia, as well as an autoimmune thyroid problem (known as Hashimoto's disease). He asked me if I'd ever had a test to check for celiacs disease. When I answered that I hadn't, he scheduled a blood test to check for EMA and tGA antibodies. As he was scheduling this test I went on and on about how I couldn't possibly have celiac's disease since I practically live on cereal and pasta. So imagine my surprise when the results came back positive.

The next step was to consult a digestive specialist, who scheduled an endoscopy with an intestinal biopsy for the end of the month. I was told to continue to eat things with gluten so the biopsy results weren't a false negative.

I spent the month making the most of my possibly last days of gluten. Pasta. Cereal. Bread. Pizza. Eating out. During this month I started to slowly finish the food with gluten I had at home and separate gluten-free food from gluten food. It was easy to deal with the concept of having to eat gluten-free during this month because I didn't think about it too much, though I wasn't looking forward to the biopsy. I kept thinking about the tube they were going to stuff down my throat.

But it was a month of research and I found out we'd need two toasters, we wouldn't be able to fry food in the same oil and more. Looking at prices of gluten-free food in the supermarket let me know our shopping bill would definitely increase. And I'd probably have to invest in a bread machine (spoiler alert: all completely true!). I also read a lot of research from recent clinical trials and new study drugs that are being developed (there seems to be one coming out in a few years time, though I doubt this drug will be funded here in Spain).

The day I had the biopsy I was told to try to eat gluten-free for a few weeks. The results were going to take a while and during this time it would be a good idea to see how eliminating gluten from my diet felt. The first week was definitely about getting used to the idea. I had separated the food but I hadn't paid that much attention to keeping things like bread in the same cupboard, just on a different shelf. So I separated the food into cupboards. It was pretty hard to make this transition as I've always kept my kitchen organized by "stations". One cupboard was for breakfast things (cereal, bread, tea, coffee, biscuits...), one for lunch and dinners (pasta, rice, tuna, tomato puree...), another basket for quick dinners (tortilla wraps and noodles...). Having things from different stations all in the same place made me a little uneasy.

I also discovered that eating out was going to be a big issue. The first day of my gluten-free diet I had a work lunch. We went to a place that basically served fried fish (in flour, so I couldn't eat that) so we ordered a russian salad. You can imagine my surprise when I asked the waitress if there was any flour in it and she came back a moment later to tell me it did. I had a tomato and a small plate (highlight on the small) plate of grilled squid. I was still so hungry at the end of it that on my way to the bus stop I had to pop into a shop to buy a pack of crisps (gluten-free of course).

It definitely wasn't going to be easy, that's for sure, and I had a feeling I'll have to decline quite a few work lunches if I really wanted to do this properly.

At the end of this week I got my biopsy results. They came back negative. So the doctor told me I had to have a genetic test done to see if I have a positive HLA-DQ2 or HLA-DQ8. The problem with this test is that 6% of those who are negative have celiac disease and 20% of those who are positive don't. My results came back positive. 

After a month of eating gluten-free, I noticed I no longer felt bloated or had stomach cramps like I used to. I hoped it wasn't a psychological effect, but rather that I'd discovered what was producing it. Getting used to the diet is the hardest part, but once you accept this is what you have to do and see the effects of cutting gluten out of your diet, it will make you not want to go back. It's been a year and I'm still going. Eating at home is the easiest option but you don't have to cut dining out of your life. Just be careful and tell the waiter. 

I keep looking for alternatives for gluten-containing food I used to love, such as tortilla wraps and save them on Pinterest. My idea is to start sharing some tried and tested recipes for those of you who are also looking for gluten-free substitutes. 

I'd love to hear other first experiences on a gluten free diet and specially suggestions for eating out (that don't involve always asking for a salad). If there's a recipe you'd like me to test, please let me know in the comments below!! 

Sam
xx

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