Let’s talk about how I actually got here, it was definitely an adventure
In all honesty I didn’t even know what an autoimmune disease was at the time. ‘Was this a joke? This can’t be true?’ At this point I had gained 50 plus pounds which wasn’t the norm for me and my body (meaning that after I reached 175 which was my max at anytime, my body would immediately let me know and I would start doing things about it) well at this point I was at 185 which my body never saw and I could tell things weren’t right. I looked bloated/pregnant and I wasn’t comfortable at all in my skin. I went to my primary doctor for a general check up for my sinuses and I let her know how I was feeling and the pain but she just bushed me off. At this point I thought the pain was all in my head, I was confused, in pain and basically in denial because of what one doctor said. Never second guess yourself when you know your body isn’t right and you are constantly in pain. I suggest that you definitely get a second opinion and I did. I also fired my primary doctor after this incident, if you couldn’t believe me with the information that I provided to you then I can’t have you on my team.
One day I was having one of my regular meals and I noticed after I was finished eating my stomach was burning(signs of an ulcer), I knew at this point that the pain was real. Not only was my stomach burning but every joint in my body was hurting, back spasms were back and I just can’t get comfortable. On to my next initial thought, contact my last specialist that detected the last stomach ulcer that I had. When an endoscopy for a stomach ulcer detects something more serious. Celiac was detected after the biopsy results came back. I wasn’t ready at all for the news. Internally I screamed and I think died a little inside once I received the list of what not to eat.
Months to follow
I went into depression not only because of the foods I couldn’t eat but at this time I had reached my all time high of weight 198.8 just 1.2 pounds from being 200 pounds. I have never, I repeat I have never seen 198 let alone 200 pounds. I was not happy and/or confident within myself at that weight. I didn’t even know what 200 pounds would look on me. All of this happened within 6 months of each other. I was diagnosed with celiac disease after all the testing results came back. The first 3 or 4 months were the worse, I hated the fact that I couldn’t just pick up anything in the store without first reading the ingredients. Drive thru restaurants were a no go. I was just bummed by the fact that the simple things I couldn’t enjoy anymore as far as eating or at least I thought. I was definitely on a strict lifestyle changes but some people still want to put it in a category to call it a diet. Celiac disease or gluten intolerance is not a diet, it is indeed a lifestyle change because it affects your life in more ways than one. Hair products, lotions, makeup, food everything has to be gluten free.
Well dietician, nutritionist, a follow up endoscopy a year later my body was still showing signs of gluten. I didn’t understand why until I realized my foods were still processed. I wasn’t cooking but instead relying on the store brought foods to be gluten free because they were marked gluten free. So I decided it would be safer to cook everything at home. I would still enjoy going out for dinner or lunch on occasions but I would first have to research the restaurants and/or call ahead of time to make sure they offered gluten free and if not I would have to decline or find another restaurants. (Calling at first was so as I called it depressing, I hated being different and I hated not hanging out outside of work but I’ve realized my health came first, so it became natural after a way). Gluten free is expensive but it’s worth it in the end. I’ve found ways to cut costs when eating gluten free especially for meal prep. (I will create a separate post for eating gluten free for under 20 dollars in an upcoming post).
Current status: 4 years later
I’ve survived 4 long years of living gluten free and I must say this a learning experience. I’ve learned so much about how to stay positive even when you don’t feel like it. My diet is now mostly me eating right and me cooking every week instead of grabbing the easy alternative. About 2 years in I was at my goal weight which was 145/150 mark but after a lot of other health issues my weight goes from 170 to 165 and I’m on the journey again to get back to 150. Things are getting better with the awareness even with some mishaps but I’m glad that the world is seeing that it’s not a fade and actually a health issue.
Celiac is serious and it took me a year to realize that. Having great family and friends make it easier as well. Having a support system is a great help as well especially when you have moments went you want to just grab something and not read the labels but trust me when I say mine keep me in check. They keep me in check so much, they will let me know when something is gluten free now. I can hear one yelling now, “No that’s not gluten free!” I just sigh and walk away.
I still have my moments where I want that bowl of noodles, yes noodles I miss those the most. I guess because it’s something quick and easy. There is no cheating with gluten free because as I explain it, it’s like food poisoning times 10. It’s rough trying to cheat and it’s not worth it, so I don’t cheat anymore.
So my current status is as follows: I’m gluten free and I feel better than I have felt in years. I’m happy even when I’m uncertain about trying new foods. I’m aware that new people will be diagnosed with celiac disease and will need help getting through it. I’m confident that the awareness will bring a new light to help less fortunate families. Truth is some days I honestly don’t know how I survive day to day, I’ve learned to deal and be thankful that I have the resources to actually follow my gluten free lifestyle correctly.
What is gluten? What is celiac disease? Why is it important to follow a strict gluten free lifestyle?
Gluten is a mixture of proteins found in wheat and related grains, including barley and rye. Celiac disease is an autoimmune disorder in which people cannot tolerant gluten because it damages the inner lining of their small intestine and prevents it from absorbing nutrients. When a person with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying the villi. Villi is the tiny, fingerlike projections on the inner lining of the small intestine. A person with celiac disease should follow a life-long gluten free diet, strictly avoiding wheat, rye and barley proteins. Following a gluten free lifestyle is important because it allows the intestine to heal and helps prevent conditions that may be caused by long-term untreated celiac disease, such as lymphoma (a cancer of the lymph tissue) and osteoporosis (the chronic loss of bone mass). Celiac disease is determined by a biopsy of the same intestine and/or by blood work. There is no time frame for when celiac disease can/will be detected. There is no time, age, place or event that can prevent this from being detected. It could definitely be you one day so don’t be discouraged if it does happen. Reach out for help.
If you are new to the gluten free world, be very aware of the chance of getting sick from cross contamination, whether it be at a restaurant, home or from buying foods that are made in an area that handles non gluten free foods. If you read a label and it reads “may contain traces of wheat” definitely run, chances are that product will get you sick. I’ve been glutened from cross contamination plenty of times, definitely not fun. Make sure to thoroughly read labels even if it means being in the store an extra 30 minutes, it will definitely pay off. If you decide to take a trip to a restaurant that offers gluten free, please speak to the manager or the cook and let them know your health condition is important and real. Don’t be afraid to ask questions about the menu, you’re paying so you deserve to get what you’re paying for without being sick for days afterwards. Don’t punish yourself because the waiter/waitress is getting upset about all the questions. You deserve to know.
How I’m living with an autoimmune disease
I have celiac disease, celiac disease does NOT have me!
With all that being said, I’m currently gluten free not by choice but by medical default. I had no choice in this decision, but I have made a choice to make this a great experience. If you don’t have to be gluten free for medical reasons, I do not advise you to go gluten free. Seek medical advice first. This life is not for the weak at heart, it will definitely take a toll on you mentally, physically and it will try you financially. Yes I still get upset about the 5 dollar loaf of bread compared to the 1.79 loaf of bread. Hey, I’m only human! I’ve come a long way from where I first started. I can now actually cook a great gluten free meal from pasta, seafood, chicken, chili, soup down to even dessert. I’ve learned that even though it’s gluten free doesn’t mean it can’t be delicious. I have to eat as well. Most recipes can be modified to be gluten free. The great thing is some of the foods you are already eating are labeled gluten free if you just read the label. Oh yeah I dislike weddings, company parties/potlucks and parties that don’t offer gluten free food, we are humans too even if I have to bring my own food. We/I love eating good food and having conversations with people at events without feeling different all the time. It’s a simple as asking and being genuine, this might be you one day. Never treat someone like an outsider because they have to live differently than you, you never know when the shoe will be on the other foot.
Researching, trying new things, positive energy, less complaining and networking has helped me through these 4 years. I have celiac disease, celiac disease does not have me. I am the light and the way of the future for anyone that doesn’t believe that this is possible. True I get in my feelings some days but most days I’m here to live this life and learn from it each day. Not every day will be perfect but every day will be worth living. Shine bright and don’t forget to FIND YOUR LIGHT!
Until next time!