Introducing Food Fridays

When I first heard the words gluten free for any kind of food whether it be some kind of sweet treat, bread, pizza or anything else, I have to be honest this is the image that came to mind.

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Yes I thought everything that was gluten free would be like chewing on a flavored styrofoam cup. To be honest, there have been a few items that I thought were like that. I was HAPPILY SURPRISED when I found out my favorite coffee shop, The Harbor in Lincoln Nebraska, had gluten free items they bring in.

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This afternoon, I had a gluten free muffin- CHOCOLATE muffin at that. They warmed it up for me and it had a nice chocolaty gooey middle that I loved.

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I talked with Cindy the owner about their gluten free items. She told me that they buy their gluten free items. The muffin I bought was wrapped in plastic to minimize cross contamination.

They also have gluten free bread they can make sandwiches with. Cindy explained to me that if they get an order for a gluten free sandwich, the staff has been trained to use a different knife and board to make the sandwich on, so if you stop in to order, make sure to tell them you need gluten free. They take precautions, but she made sure to tell me she can’t absolutely guarantee they are gluten free because they are made in the same area as the regular food. Cindy is very conscientious about taking care of her customers. I ate one of the chocolate muffins last week and had no problems, so I felt comfortable getting one again today.

I will try to post Food Fridays earlier in the future. If you are like me, having Celiacs has made me cautious about what I can and can’t eat, but also has left me looking for tasty foods. Of course, the muffin is a once a week kind of thing because I do NOT want to gain back the weight I lost.

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Celiacs- Getting Diagnosed/The Long and Winding Road

Dealing with any autoimmune problem can be puzzling when going through the process of getting diagnosed. At times it can feel like we are finding our way through a maze that keeps changing or putting together a jigsaw puzzle with hundreds of pieces..

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Of course I am not a doctor, and I don’t play one on TV, but I do have experience from the patients point of view, which if you are reading this, perhaps you are wondering if Celiacs is an issue for you.

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I have been through the maze of diagnosis twice for autoimmune issues. The first was hypothyroid in the 1990s and the second of course was for Celiacs. I think there are two crucial things for getting the diagnosis, 1- communicate with your doctor as a team working together, and 2- be your own advocate.

As I think back over the years, I think I had Celiacs for a long time, but the symptoms were not so severe. If I had GI tract problems, I figured it was because I was a bad cook, which I really am. The symptoms were becoming alarming for me in the fall of 2016 and even more so in the winter of 2017. I began having night sweats, my knees were swollen, I had rashes  or spots all over my body, I was fatigued etc etc.

One night I had leg pain so severe, it felt like I had a fracture or something, so I went to the ER. They told me I had shin splints and it felt like they thought it was in my head. I have had shin splints before, so I knew that wasn’t it.

2 weeks later my other leg started turning red and got all puffy while I was teaching my evening class. It got the point that I thought my leg would pop. I went to the ER after class, and they told me I had dermatitis and gave me antibiotics.

I went to my GP and told him I thought I needed to go to a rheumatologist. I have two siblings with psoriatic arthritis, so I thought the skin rashes and joint pain pointed to that. He told me I didn’t have psoriatic arthritis, but he did x-ray my knee and told me I need to see an orthopedic specialist. I asked why I have pain everywhere if I did not have psoriatic arthritis. He suggested let’s start with the ortho doc. By this point I felt like screaming- I AM NOT CRAZY!!! I HAVE PAIN EVERYWHERE!!! But I didn’t yell.

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The ortho doc told me I didn’t need knee replacement yet, but we needed to find out what was causing my pain. He referred me to a rheumatologist.

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At the rheumatologist, she listened to me for about a half hour or more asking questions and then told me to just talk. When I said, “I don’t know why when I eat Triscuits my feet swell up. It happened in May, so I wondered if it was the sodium, but I ate a lot of potato chips and nothing happened, then I ate Triscuits again, and my feet swelled up again. (Please understand I am not against Triscuits and if i didn’t have Celiacs would still eat them today). When I said that, she looked up from her laptop at me, paused, and then entered something in her laptop.

She ordered up tests. I had almost everything except my hair x-rayed. I had five vials of blood drawn for several blood tests. She also sent me to a dermatologist to be checked for psoriasis where they did a biopsy. By the time all was finished this was what I felt like.

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But I am SO GLAD she had me go through all of the tests BECAUSE autoimmune is a complex issue. There are many issues that can mimic each other. We as patients have to be patient, play on word intended, in the process of getting the diagnosis. On July 31st, I had the call from the rheumatologist’s office letting me know I had tested postive for Celiacs from the Tissue Transglutaminase Antibodies (tTGIgA) test.

I had the answer. It wasn’t what I was expecting. But enduring the labyrinth of doctors, 7 of them, tests- MANY TESTS, I had the answer.

SO- Please communicate with your doctor. Even small things we say can tell a doctor a lot such as when I told the rheumatologist about my feet swelling but only when I ate Triscuits. Keep track of and write down your symptoms so you don’t forget things when you are at the doctor’s office.

ALSO- Be your own advocate. Don’t be afraid to ask questions and to ask to be referred.

After all, it is your body and your life!!!

 

Celiacs Disease My Personal Trainer? Am I Crazy?

The name for my blog could perhaps cause some to wonder if I am a bit crazy. However, the name comes from a conversation I had with some friends from South Korea that are living in my city, Lincoln Nebraska. I had not seen them over the summer of 2017. In fact the last time I saw them, I looked like this.

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For years, I could not lose weight. I kept bloating up. I would eat sandwiches made with 100% whole wheat thinking that was healthy, which for most people it is but not for someone with Celiacs. I would eat fast food about every other day. A few times I mentioned to my doctor that I didn’t understand why I would gain four pounds after eating 2 slices of pizza and an iced tea with no sugar from Vals to Go.

July 31st, 2017, I received a call from a rheumatologist I had seen with the news. My blood test came back and I had tested positive for Celiacs Disease. Over the summer, I had managed to avoid white flour because I thought I had a form of arthritis and read that white flour causes inflammation, but after my diagnosis for Celiacs, I had to go gluten free meaning ZERO gluten.

It was an adjustment to COMPLETELY change how I eat, but pain is a great motivator. More on that in my next posting.

Well, after being gluten free for a while, I look like this.

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You can see the difference in my face. I have lost 50 pounds so far.

So how does that relate to the name of my blog that might make you think I am a bit crazy?

I was having lunch with my friends from Korea in their home.

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I SO appreciated that they cooked with gluten free soy sauce, yes regular soy sauce has gluten in it, sadly BEWARE of Sushi.dog-face-labrador-smile-407082.jpeg

As we were eating lunch, Jee Hee the wife commented about how different I look since I lost weight. I shared with them that I had to change how I eat because of Celiacs and a positive is that I can lose weight now.

Jee Hee used google translate to find the words Personal Trainer and smiled at me and said, “So Celiacs is your Personal Trainer.”

We all had a good laugh and that stuck with me. Celiacs is no joke, but if we approach it right, there are benefits for our health. For me, a BIG one is finally being able to lose weight. I hope to lose another 50 pounds. I plan to continue learning more about healthy eating for someone with Celiacs. I am no expert, but will share what I learn as I am on this journey.

I am trying to keep the attitude that Celiacs is teaching more me about health and fitness. Not that I will be running in a 5K or anything like that, but feeling better and being more healthy is worth it.