I have a truth that I want to share. The truth starts with something that isn’t a secret. I have Celiac disease. The kids both have Celiac disease as well. Its not an easy thing to deal with but we do it. So here’s my truth Celiac Disease stinks.
- Most people don’t realize that being gluten free isn’t an option. I can’t chose to eat something just because I want to. The effects of eating gluten can be horrific for any Celiac patient and they effects vary from person to person.
- Most people don’t even know what gluten is. For those who don’t know, gluten is a protein in wheat, barely and rye. Strict Celiac patients like us also avoid oats unless they are certified as gluten free. Why? Because they use the same mills as the wheat mills and are contaminated.
- Diagnosis can happen at any time and can be missed quite a bit. When I was 19, I had a rash that wouldn’t go away. I was sent to a dermatologist who did a biopsy and said you have dermatitis herpetiformis. He told me to try to stay away from gluten, learn what my triggers were and it would be fine. I went for over 10 years eating all the things that I shouldn’t have been because he didn’t say you have an allergy to gluten. When I went for my bariatric surgery, the gastroenterologist said, no you have Celiac disease. You need to completely change your diet. So I did. The kids were then tested as its hereditary and both were positive.
- It effects people in different ways. For Charlie and me, we get lethargic and constipated. Rachael though becomes extremely lethargic and will projectile vomit. That’s the immediate in your face effects. The effects you don’t see is the permanent damage that you do that can be life threatening. You see gluten attacks the little finger like structures in your intestines and make them lay flat. As they are flat, they can no longer process food appropriately and you no longer get all the nutrition that you need from the foods you eat.
- Treatment seems easy for most people. You simply go gluten free right? Except do you know all the places that it hides? Wheat is used as a thickening agent and preservative and many items you would never think of. Steve still goes nuts when he thinks about it being in imitation crab meat. Then there’s eating out. You can never really be certain that your food isn’t going to have a bit of gluten in it. Dedicated fryers are a great thing until someone puts something in the wrong fryer and doesn’t tell anyone they did it.
- Even gluten free do you still have symptoms? Yep every single day. Some of the long term symptoms are:
- Depression and/or anxiety
- Dermatitis Herpetiformis
- Abdominal pain
So do I actually suffer from any of these symptoms on a regular basis? Yep. I have migraines often. While the blog is titled I Like It Frantic and I do like my life busy, some days I’m just too tired to do much. The depression and anxiety come in waves for me. Its almost cyclic. There will be weeks where I feel like I’m barely getting through life. I become overly anxious and don’t want to be around anyone. I however have a family and work requirements that make me have to suck it up and move on.
When you see someone say I have a silent illness, one that you just don’t really see much about or see the effects of in person, you need to remember some of us have been dealing with our silent disease for a lifetime and we’ve learned we just have to keep going. There’s no stopping for the mom who has a blog to run, kids to run errands for, the cooking, cleaning and so much more. So don’t be surprised if:
- I don’t answer the phone or reply to messages right away.
- I cancel our plans, especially at the last minute.
- I seem like I’m not interested or not listening. Its called brain fog.
- I leave early from a party or gathering. The social anxiety kicks in often.
- I seem fine but suddenly need to lie down or rest.
Because when you have an invisible disease, its hard to explain to someone who doesn’t know. Its a daily struggle to be in pain, being anxious, feeling tired nonstop, or feeling sick on the inside when you look perfectly fine on the outside.
If you see me angry at a restaurant, know its not just because I don’t like croutons in my salad or that finding fried chicken in my grilled chicken salad is an inconvenience. It actually leads to being severely sick. Gluten Free isn’t just a fad diet and we’ve gotten comments from wait staff in the past about. It’s about not wanting to be sick. Its about trying to stay as healthy as we can. And its possible that I’m going through one of those depression/anxiety moments that is exacerbating the situation even more.
If you see me not eating at a gathering, feel free to ask me if I’m okay. I will say I am (I usually prep ahead for parties, trips and such by eating ahead or packing food.) But let’s not ask me a million times. I was at a party a few weeks ago when the hostess realized I wasn’t eating and it became the talk of every single guest for the next 15-20 minutes. Even after saying repeatedly I was fine, they were trying to figure out something to feed me until someone asked me for the upteenth time and I all but screamed I’m fine. I hate to have the attention focused on me and especially for this reason. So if someone says they’re fine, not hungry, they ate ahead of time, let it be. It makes us feel worse when we have to explain our situation to everyone. Most patients will plan ahead like I do. I’ve been on press trips where I’ve literally ate protein bars for 2-3 meals each day for 3-4 days in a row because I knew they were safe and wanted to be able to continue my job.
Remember Celiac disease is not an in your face you know someone has it disease. Its a silent disease that you don’t know someone has unless they tell you.