Anyone else in this really annoying, painful, and embarrassing reality with me? It’s not great to talk about, but it’s even worse to deal with as a reality every single day.
I am no expert by any means, but I will share my story. I hope others comment and share theirs as well. Anything to raise awareness that this is a real issue !
Below is a description of non-celiac gluten sensitivity straight from celiac.org:
Some people experience symptoms found in celiac disease, such as “foggy mind”, depression, ADHD-like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease. The terms non-celiac gluten sensitivity (NCGS) and non-celiac wheat sensitivity (NCWS) are generally used to refer to this condition, when removing gluten from the diet resolves symptoms.
Until now it was thought that people with NGCS/NCWS only experienced symptoms and did not have any intestinal damage. However, in July 2016, a team of researchers at Columbia University Medical Center, published a study confirming that wheat exposure in this group is, in fact, triggering a systemic immune reaction and accompanying intestinal cell damage. It is estimated that the impacted population is equal to or even exceeds the number of individuals with celiac disease (the vast majority of whom remain undiagnosed).
I have been diagnosed as gluten intolerant with possible IBS by a GI doctor. I did not have symptoms of this my entire life, but I have always been sensitive to dairy. I do okay with most cheeses and products that contain milk as an ingredient in boxed/frozen food, but straight up milk and ice cream do a number on me.
After having my daughter I gradually started noticing issues with my digestive system. So gradual, in fact, that it took me years to realize things had gone horribly wrong. I finally made an appointment with my GP after I was getting so tired that my eyes were wanting to shut while I was driving home from work (I do not have a high stress or physically demanding job). I was tired all the time, no matter how much I worked out I couldn’t lose weight, I was getting headaches daily, I was bloated, and I just felt like I was walking around in a fog all day. I wasn’t depressed or under a ton of stress, but I just wasn’t feeling like myself either.
Long story short, my GP ran a ton of tests and couldn’t find anything wrong so he sent me to an internal medicine specialist. She ran some other tests and found out that I was deficient in multiple vitamins. They helped with some of the exhaustion, but I still didn’t feel right. I had recently seen some articles about different food intolerances and asked her if that could be a possibility. She asked tons of questions and I was so embarrassed that I didn’t even realize how bad things had gotten until I had to start answering questions like how many bowel movements I have a week and the consistency, etc. I had gotten so use to things gradually getting worse that I didn’t even realize how abnormal it all was until I had to say it out loud. Since I’m already sensitive to dairy, gluten and wheat came up as a possible culprit. A celiac test was done, but came back negative. She told me to eat gluten free for a month anyway and see if that helped. After around a week I started noticing a major difference. After 6 weeks I was starting to feel like a new person. But since there is no lab test for non-celiac gluten sensitivity guess what makes the diagnosis? Yep, eating foods that contain gluten after you’ve gone gluten-free to see what happens. There are no words to explain the level of miserable that was. I went from finally feeling great to unreal bloating, headaches, gas, diarrhea, audible stomach gurgling that my husband could hear from across the room, and complete exhaustion once again. After having taken it out of my diet completely, the symptoms were even worse when they came back.
Needless to say I got told to eat gluten free again and was handed a referral to a GI doctor. The GI doctor basically just affirmed that I need to eat gluten free and that a lot of my symptoms could swing towards IBS as well, so to just be extra conscious of what I am eating and how it makes me feel. Basically just pay extra attention to my body and what it’s telling me, and if it got worse or I couldn’t control it, to come back in.
I have “gotten myself” a few times and paid the price. Gluten is in SO MUCH that you don’t realize, especially when you are brand new to it. Soy & Teriyaki sauces, gravy, soups, seasonings, basically all baked goods, etc. I remember the first Christmas that I was gluten free and my mother-in-law was ecstatic because she had made homemade chex mix with all gluten free pretzels & chex cereal since it is my favorite holiday snack. The next day I felt terrible. After going gluten free and then consuming it, you know the difference between a normal upset stomach and a gluten-related upset stomach. I knew I had to have eaten something, but couldn’t put my finger on it. My husband started looking up ingredients. Turns out the brand of Worcestershire sauce she used on the chex mix was not gluten free.
Pizza hut french fries? Not gluten free because of their seasoning. Learned that on the hard way too. Now I look up every single restaurant before I even think about going there. Just because something you make may be gluten free does not mean someone else uses the same ingredients or brands. I haven’t noticed any negative consequences from cross contamination (like from cooking on the same flat top at restaurants), thankfully.
It’s so much harder to go to friend’s house for a party or to dinner. I end up packing snacks in my purse when we go to eat with friends because I don’t want to end up with nothing to eat and I don’t want to make them feel bad either. If it’s not something you have to live with, you don’t think about it. We do have some amazing friends that always remember and specifically make sure there’s food for me.
There have been a few times that I’ve “gotten myself” and never figured out what it was. Whether it was something labeled gluten free that wasn’t or if it was more IBS related than gluten related, I’m still not sure. It’s an ongoing process that I’m not sure has an actual end date.
This week has been especially bad for me. I feel like I ate something I shouldn’t have, but I know I haven’t unless something was labeled improperly. I did have a stomach virus (courtesy of my daughter who just loves to share) over the weekend, and just haven’t been totally right since.
Not only are the symptoms uncomfortable and sometimes downright painful, they are embarrassing. Try being at work with uncontrollable gluten induced diarrhea. Or having your stomach gurgling so loud that people walking by your desk can hear. Being so bloated that your usually comfortable dress pants just don’t fit right. Want to be romantic with your spouse? Not a chance.
The real bummer for me is that whenever I do ingest something that causes the symptoms to flare up, they last days. At least if I eat ice cream I feel bad for an hour or two. Eating something with gluten punishes me for about a week depending on the amount. I don’t know if other people react the same, but if you do I feel your pain. Literally.
My hope is to spread awareness that this is a real problem. There is a stigma to it and that sucks. No I’m not ordering gluten-free to be trendy or high maintenance. No I’m not doing it to lose weight. No I’m not doing it because I have a friend doing it and thought it sounded fun. In reality, it is very very far from fun.
If you are gluten intolerant or know someone who is, please comment and briefly share your story below! If you don’t feel comfortable with that, head over to my “Contact Me” page and send me an email!
My hope is that someday soon there is enough research done to find out why we have the same symptoms as celiac but are not celiac. I hope there starts being enough awareness that the stigma goes away. I hope a cure is found.