My Gluten Free Journey
September marks 5 years of my gluten free journey! 2015 seems like so long when I think about all the life changes that occurred in that timeframe but it kinda also feels like just yesterday! I remember the frustration and difficulty of those first few weeks and so many crazy disaster recipe experiments along the way. Today I’m reflecting on these past five years and talking about the path to discovering my gluten intolerance.
I just want to take a moment to say that I never pictured myself creating recipes! Like what is this? And if you’d told me years ago that I’d have a blog that has a major focus on food, I would’ve thought you’d lost your mind. Isn’t life crazy like that? You may or may not know that I didn’t really like to cook for a long time and when I found out about my gluten intolerance I was not excited about the fact that it would require a lot of cooking at home. It’s taken me a while to gain confidence in the kitchen and to truly enjoy cooking. Especially when all my favorites food were items containing tons of gluten.
Kitchen Confidence
While I have expanded into some other topics through my blog, encouraging readers (whether they have dietary restrictions or not) to feel more comfortable and confident in the kitchen continues to be one of my biggest goals in blogging. I believe that even if you are normal and can eat whatever you want, we as a society have moved toward eating out frequently, making us less knowledgeable in the kitchen.
I’ve never claimed to be an expert, meaning I’m not a chef or in anyway trained in culinary arts. And I’m certainly not a medical professional so please seek advice regarding your dietary health from a dietician or doctor. But I hope my approach comes across as your friend or neighbor that’s just figuring it out as she goes and sharing as she learns. Between my husband and I, we have a lot of dietary restrictions and we have to eat to live so you could say we’ve been “forced” to figure out how to make things (recipes, restaurant menus) work for us.
So much of this “figuring it out” journey has been about our mindset and attitude. I had a really bad attitude about going gluten free at the beginning. Yes, I was 100% on board with cutting out gluten in order to feel better but I saw it as a limitation constantly. Work events became a challenge. Road trips with friends meant stopping at exits that had “somewhere Sarah could eat” which is super sparse when it comes to fast food. Cooking (which is already a struggle when you’re single) looked less enticing because it came with so many challenges. Grocery shopping required all this research, less now but at the start it was exhausting. Going to any social event meant interrogating the host or everyone who brought food to make sure I wasn’t going to get sick and I hated feeling like an imposition. But with time, I began to better understand and learn ways to work through lots of social situations. Yes, gluten intolerance, like most other food allergies, requires preparation. But does that mean I can’t live spontaneously? No way. I run the risk of not finding something to eat sometimes, sure, but for the most part it’s not bad. The gluten free options in grocery stores and restaurants have increased so much in just five years.
Finding Out
WARNING: This section gets into the details of how I learned about my gluten intolerance, so if you can’t handle a little gross-ness, skip ahead.
So in 2015, I started getting sick like 1-3 times a week. It would come on quickly. I would be fine and then I wasn’t. My stomach would feel horrible, pain, upset stomach, it was not good. I would end up in the bathroom for lengthy periods of time and almost always had awful diarrhea. This was always so awkward when I would be out with people and we’d be somewhere like a store, and I remember instances where they’d go sit in the car because I would be in the bathroom for half an hour. It was no way to live and after a few months of trying to figure out what was going on at home, I decided to ask my doctor to refer me to a gastroenterologist.
At first, they wanted to treat me for IBS and I tried the meds but it made me feel sicker. I stopped taking them after a while and the doctor decided to do a blood test. I don’t remember what kind of test but basically it would somehow indicate if I might possibly have celiac disease although I don’t think the test alone can guarantee that. But anyway, my results came back inconclusive. I was annoyed and I don’t understand or remember why, if it was ever explained to me, we didn’t just redo the blood test but from there they said I should be scheduled for an Upper GI Scope. My mom came up to stay with me when I had the scope and it was explained that my small intensine didn’t show what they were looking for in order to diagnose me with celiac disease so that was ruled out. I was frustrated. I was convinced it was celiac. I have a number of family members who have celiac disease and it just made sense in my head but the doctors said that wasn’t it. Which of course, is a blessing, but I was irritated that I’d gone through this and not found out what was causing me to get sick. I did get some insight into some other factors in my digestional tract health, so it was still beneficial. But after that, they basically wanted to put me on a different IBS medicine and I honestly felt like the doctors were being dismissive of the whole thing. I asked the doctor if we could try anything else to get to the root of this and they suggested cutting out a food group. Since celiac disease is in my family, gluten was the front runner in food groups to eliminate. I was to give it about a month to see if there was any improvement and then we’d consider something else if it wasn’t the answer. In about 3 weeks I felt like an entirely new person! I was sleeping better, I wasn’t get sick like I used to and I didn’t even realize until then just how “foggy” my brain had been under the effects of gluten.
A few additional notes on the topic of “finding out”:
Just because this is what my journey looked like doesn’t mean that you experiencing the same things will mean you’re gluten intolerant or have celiac disease, so please go see a doctor if you’re having issues because we are all different and Lord knows I’m not a doctor.
You have to advocate for your own health. I’m not speaking about all doctors when I say this, because I’ve had some amazing doctors in other areas, but in this case, I had to keep pressing for answers and that’s sometimes a sucky feeling. It was a very frustrating journey and I’m not one to disagree with a doctor’s expertise, but I tried what they suggested and it wasn’t working so I kept coming back until we found an answer. You have to take care of you.
If I could go back in time, here’s what I would have done differently in 2015:
Two things:
I would have pushed harder to be rerferred to a dietician. It’s super discouraging that this wasn’t the norm for people like me who don’t have celiac but have a clear intolerance to gluten. If I had been diagnosed with celiac, apparently that was common but because it’s not celiac, so sorry about your luck. (This may be different now, not sure!) But I think having a dietician to work with would have made a huge difference in the early stages of going gluten free when it feels like information overload and it’s a bit exhausting trying to adjust to such a different new normal.
I would have requested a food allergy test. It is my understanding that if I were to take a food allergy test now, it would likely show that I’m allergic to wheat even though I might not be “allergic” simply because it is foreign to my system at this point. I don’t fully understand how all of the food allergy stuff works, but I don’t seem to have issues with other foods so I don’t see an allergy test being something I need now. But I have heard of others going through testing, who think they have celiac but the upper GI scope says otherwise, go on to take a food allergy test and it showed they were allergic to wheat (which is a somewhat simpler life than the gluten intolerant life). Again, in my case, it doesn’t really matter now because I know that gluten makes me terribly sick and I have no plans of reintroducing it to my system.
Side note on this side note: For those curious, yes I get sick when I eat tiny bits of gluten on accident. I once tried to take regular communion just to see if it made an impact and it did in fact me sick. Same thing if a piece of a cookie ends up in my DQ Blizzard. Bad news bears. (Yeah I know the celiac people reading this are freaking out because I eat DQ Blizzards, but I don’t have celiac. There is a difference in celiac disease and gluten intolerance. Celiac disease is an autoimmune disease.) Yes, eating risky things like a blizzard means 0.01% of the time it makes me sick (I’m making up that chance percentage but you get where I’m going with this). But that’s pretty low and it’s my choice. However this doesn’t mean I’m going to knowingly eat gluten (like a piece of cake) or whatever just to “enjoy” what I love because it’s going to make me feel so terrible. My take on things: I avoid cross contamination in situations like fryers and the such, but if the rolls are passed over my plate, I don’t throw out my plate because a crumb might have fallen on my food. Make sense? Again you might have a different opinion, good for you… Also celiac disease is very serious, not that gluten intolerance isn’t, but it’s just a different set of circumstances.
Should You Go “Gluten Free”?
Well for starters, that’s not my call. But I encourage you not to look at “going gluten free” as a diet or trend/fad. For those who have felt the full effects of gluten’s negative impact it wasn’t about trying a new diet or fad, it was about getting our life back and feeling better.
I can tell you it hasn’t made me lose weight. I don’t think it’s why I have gained weight over the years either, I think that’s the result of a number of factors but I’m of the opinion that my gluten free lifestyle alone has neither helped or hurt my weight.
But if you’re convinced that gluen is a serious contender in your ongoing sickness or discomfort, I seriously suggest talking to you doctor about what to do. It’s my opinion that you shouldn’t cut it out on your own for a few weeks to see what happens. I say this because, I think it is important for you to get all the facts. If you start with a doctor, they can help you rule out any other possible causes that could be very serious.
Naturally Gluten Free Foods
This is something that again plays into the mindset thing I mentioned earlier. There are so many foods that are naturally gluten free. Getting out of a scarcity mindset will help you to realize that there are so many delicious foods you can eat that aren’t going to have a cardboard consistency so many people complain about when eating gluten free “alternatives.”
It was so difficult for me in the beginnning because I was a picky eater. There are tons of foods you probably ate before going gluten free that you can still eat and that’s probably the best place to start if you’re new to cutting out gluten. Just start looking at what you like to eat and see what is fine just the way it is or what could easily be modified. Sometimes modifciations don’t go well so keep an open mind - I’ve found in some instances, a more drastic “modiciation” actually tastes better than a simple swap… Take spaghetti for example. In my opinion, spaghetti squash tastes 10x better than “gluten free spaghetti noodles” when cooking spaghetti. So it’s going to be like that, sometimes you can swap flour for GF flour and it works like a charm, other times that kind of swap is not the case.
But I will say, there are many amazing gluten free alternatives continually hitting the market and again, it is SO MUCH BETTER THAN IT USE TO BE!!
It’s Getting Easier
So much has improved for celiacs and gluten intolerant people in the past five years. I’m continually impressed with how restaurants and grocery stores are catering to this demographic’s needs. Don’t be discouraged if you recently found out about your gluten intolerance, it is far from what it used to be!
Do you have celiac disease or gluten intolerance? I would love to hear your story.
Disclaimer: I am not a dietitian or medical professional and while I share what ingredients work for me or what I choose to eat (at my own risk) while dining out, I advise you do your homework when choosing ingredients and places to eat. I highly encourage everyone to do their own research when it comes to the products they cook with or restaurant’s procedures. I do not have celiac disease but rather a gluten-intolerance and I’m not an expert on gluten or other food intolerances, autoimmune diseases, or food allergies. I simply share the ingredients I have found work for me, the places where I’ve dined and my personal experiences.