Cleveland Convention Center – Don’t Do It

I have been in Cleveland, OH for the past week for a conference that was going on at the Cleveland Convention Center. Like most conferences, they offered a “box lunch” option for the attendees. As I always do, I let the staff of the conference know of my celiac disease in advance and they let me know that there were gluten free meals available. I clarified that my condition made it that it needed to be made with extreme caution and they confirmed that I was not the only one with celiac disease. The staff was aware and making us a gluten free option for lunch that would be labeled accordingly. Great!

Or so it seemed. I had to leave the conference early that day (which is a total bummer because I missed the session I was most excited about) and barely made it back to my hotel in time before I had the pleasure of vomiting several times and being sick for the rest of the night. Ugh.

The next day when I was back at the conference, I let the staff of the event know that the GF meal was anything but. Apparently, they had already had multiple complaints from others who got sick from the “gluten free” option at lunch. The staff said they spoke with the staff there, but would recommend I make my decision for what was best for me. I chose to have lunch at Au Bon Pain (which was great and I will outline in a separate post). And, man, am I glad I made this decision. I heard from other conference attendees that the staff “mislabeled” the ham and turkey options (obviously, there are many people who don’t eat pork products so this is also a problem) and when the attendees showed their lunches saying, “This isn’t turkey.” they were told, “No, it’s just smoked which made it that color.” Really? Last I checked smoking turkey doesn’t turn it pink.

So, my advice? Whatever you do, avoid eating food at the Cleveland Convention Center if you have celiac disease or a serious sensitivity to gluten. Or, apparently, any other dietary need. They don’t appear to know what they are doing or care when they get it wrong.

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Paleo (Gluten Free) Oatmeal Raisin Style Cookies

This recipe is adapted from the one found here, the best paleo chocolate chip cookies ever. I was never a huge chocolate chip cookie fan, but oatmeal raisin is my absolute favorite. If you read my blog regularly, you already know that. :)

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I’ve already posted a recipe for gluten free oatmeal raisin cookies, but these are different because they don’t use oats or anything. No dairy, no grain, no eggs – but don’t let that scare you – they are delicious!

Ingredients

  • 1 c. almond meal
  • scant ¼ t. sea salt
  • ⅛ t. baking soda
  • ¼ t. cinnamon
  • 2½ T. melted butter
  • 2 T. honey
  • 1½ t. vanilla
  • 2 T. shredded coconut
  • 2-4 T. raisins

Instructions


Preheat the oven to 350 degrees.


Mix the almond meal, salt, baking soda, and cinnamon.


Stir in the butter, honey, and vanilla.


Stir in the coconut and raisins last.


Bake for 10-11 minutes on a well oiled or parchment paper-lined cookie sheet (the edges should be golden).


Let them sit on the pan or remove to a plate for 5-10 minutes so they can firm up a bit.


Eat and enjoy! Hopefully, you will have more willpower than me and they will last a few days. If not, rest assured in knowing that they are quick to whip up another batch!


What do you think? Did you try them? Like them? Adapt the recipe again? Let me know!

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Boka Restaurant Seattle Gluten Free

My work has me at an event at Hotel 1000 in downtown Seattle today, and their restaurant is called Boka. I always get nervous when I’m on site at an event and subject to whatever food might be available – and whatever chef might be cooking that day (if they know/care about the needs of those of us with celiac), etc.

I must say, I was pleasantly surprised with Boka. Their menu has several gluten free options – and they are noted right on the menu (always a plus). That helps to ensure in my mind that the staff all know why gluten free is important, and not just a fad.

I got the blackened salmon tostada, and it is delicious. It has a great mixture of flavors and textures (crunchy corn tortilla, mixed greens, flaky salmon and whipped avocado mousse that I loved). It is savory, with some nice tartness (lime), spice and saltiness that balances together well.

The staff I talked to was friendly and knowledgeable. They knew about celiac disease and how to handle food for me. They even came out and offered me a gluten free dessert – the “melon medley”. I’m not gonna lie, this dessert is pretty awesome! Check out the picture below. The perfect cap to a delicious lunch in downtown Seattle.

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What is an Upper Endoscopy Like?

When you have autoimmune issues, like celiac disease, “endoscopy” is something you get accustomed to pretty quickly. Although, the majority of people have one, get diagnosed, change lifestyle, and don’t need one again…when you continue to feel sick the doc may schedule more than one.

The first two I had (upper endoscopy and colonoscopy) were done before I started my blog. So, since I am having another upper endoscopy today, I thought I would explain the prep and what the procedure is like.

First, it’s super easy. If you’re going for one and haven’t had one before, don’t worry.

The upper endoscopy is a procedure where the doctor takes pictures or samples of your small intestine. The easiest way to get there is through your mouth. I know, that may sound awful, but you’re asleep during the procedure and don’t feel anything.

Prep for this one is easy also. You will be given a schedule before your appointment. Your doctor’s preference and the time of your procedure create the timeline, but the steps are generally the same:

  • the day before the procedure you can’t take certain medications or aspirin – they will discuss your specific mess with you.
  • at some point (some say the night before, my current doctor said at 9:00 a.m. on procedure day) you can no longer have anything to eat.
  • for the next phase (in my case, 9:00 a.m.-12:00p.m.) you can only have clear liquids. This is such a short period of time that I’ll just have water, but sometimes the “clear liquid diet” goes a lot longer. In that case, you will be pleased to know many juices, Popsicles and broths are ok during this phase. No milk and nothing with red food coloring, because it can look like blood in the scope.
  • the final phase of prep is nothing by mouth – not even water. I guzzle water like a camel, so this is my least favorite part. However, I tell myself that the alternative includes peeing myself on the table during the procedure and that helps me stick to it. :)

That’s it for prep! Easy peasy. Now, you go in for your appointment. They may take stats again. You will change into your glamorous gown and get prepped for an IV (I also dislike needles so I don’t love this). You get on the table, and they start the fluids and potentially a mask you breathe into as well to knock you out. The actual procedure usually takes 5-15 minutes depending on what they are doing/looking for/find and then you’re done. Once you wake up from the meds, you get dressed and have a chat with the doctor about the findings.

The time you are at the office takes much longer than the 10 minute procedure – it’s about 2 hours. This includes prep time and how long it takes for the anesthesia to wear off. Someone will need to drive you home and if you are like me, you may choose to take another nap when you get there. :)

That’s it! Pretty easy.

Now all I have to be concerned about is my results…wish me luck!

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What is Refractory Celiac Disease?

I have not been feeling well. And, when I really started to examine my symptoms, I realized they have been going on for quite a while – at least six months. I’ve had stomach issues, incredible lethargy, headaches, and just all around feeling like garbage. I feel a lot like I did three years ago before I was diagnosed with celiac disease.

If you know me in person or really read this blog, you can attest to my strictness on the gluten free diet. I don’t sneak cookies every once in a while or bend the rules. I am definitely living the GF lifestyle. I am really careful about cross contamination as well.

To see if it would help me feel better, I recently (about two months ago) stopped eating sugar. I’m off refined sugar, artificial sweeteners and high fructose corn syrup. I feel less hungry and a little better I guess…but something is still wrong.

I thought, “Maybe it’s dairy? Maybe I should stop eating all carbs? Should I go paleo?” Before doing anything drastic and cutting every food category in the book, I opted to consult with my gastroenterologist.

I’ve researched a lot before going in – hearing others talk about leaky gut, lactose intolerance, GFCF and more. So I thought I was prepared for what the GI would say.

So, I explained all this to him and he scheduled me for blood work and another upper endoscopy to test for refractory celiac disease. When I heard that I thought, “what the heck is that?”

I researched (obviously) as I walked out the door of the GI and I’m not too excited about the options. Apparently, refractory celiac disease is really rare – <10% of those with celiac disease have it. It is a condition where even eating a strict gluten free diet doesn't repair your intestines and you continue to have symptoms. Which led me to ask myself, "What are the options for feeling better?"

The answer? Not great.

There are two types – type 1 which is less severe and type 2 which is rarer and more severe. Type 1 puts you on nutritional support which provides nutrients/food through intravenous means to bypass the intestines. And could include a special liquid diet. You also probably have to start taking steroids. Yay.

Type 2 is classified by many as non-Hodgkin lymphoma – you can read up on that if you want. Not a good option.

So, I go in for my endoscopy in one week and I've been sitting with this question for a week already. I asked the doc what he thought it could be if it wasn't RCD, and he said it might be IBS. I hate the thought of something with no real relief in sight. So…I don't know what I'm hoping for when I go in next week. I just want to know what I'm dealing with so it can start to be fixed. Is that too much to ask?

Learn more about refractory celiac disease.

Thoughts, tips or questions? Send ‘em my way. I’ll keep you posted on what I find out.

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Filed under Changes, Daily Life, Medical Tests, What is Celiac Disease?

Guest Post: Benefits of a Gluten-Free Diet for Mesothelioma Patients

Gluten free diets have become – shall we say – trendy – over the last several years. Some followers opt in simply to lose weight or see what the hype is about. But for many, it’s a health necessity, not a choice.

Most people with celiac disease explain that a gluten-free diet is the only thing that made their intestinal issues go away. These patients have often spent years coping with diarrhea, abdominal pain, nausea and fatigue before learning that it was the result of a gluten intolerance. (Gluten is a wheat protein that many people have a difficult time digesting.)

Like patients with celiac, pleural mesothelioma patients may also experience these conditions. Some issues, like abdominal pain, are primary symptoms of their cancer. Others, like nausea and diarrhea, are side effects of their treatments.

While they’re caused by different triggers, mesothelioma patients’ symptoms can also be managed through diet. Gluten-free foods may help alleviate some of these symptoms.

For example:

  • Fiber-rich, gluten-free grains like brown rice and quinoa can help stimulate digestion during bouts of chemotherapy-induced constipation.
  • Soft, bland foods can help quell post-radiation nausea. While most people associate “comfort foods” with macaroni and cheese, buttery toast or similar gluten-heavy items, options like mashed potatoes or rice crackers fit the gluten-free bill.
  • Carb-rich foods are concentrated sources of energy for periods of mesothelioma-related fatigue, but they don’t need to be limited to pastas or sandwiches. Complex, gluten-free carbohydrates like sweet potatoes and beans can provide a major energy boost to get through the day.

Beyond using gluten-free foods to address specific mesothelioma symptoms, patients may also use a gluten-free diet to reduce inflammation in the body. By avoiding this protein for a prolonged period of time, the digestive system gets to rest and focus on calming internal irritation.

While a gluten-free diet may not be medically necessary for mesothelioma patients the way it is for celiac patients, it certainly holds power to help them feel a bit better after their initial prognosis. If you’re considering adopting such a lifestyle, bring it up at your next oncologist’s appointment before making the switch.

Faith Franz is a researcher and writer for The Mesothelioma Center. She advocates for alternative medicine and encourages cancer patients to explore all of their treatment options.

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Gluten Free Protein Pancakes

In honor of Mother’s Day, I thought I’d write a post centered around a food I always used to bring to my mom (breakfast in bed of course!) on madre day. What about those gluten free moms out there? They deserve breakfast in bed too! So, here is a recipe for delicious, healthy, flourless pancakes.

Pancakes used to be one of my favorite things in the whole world before I was diagnosed with celiac disease. In the land of gluten free…pancakes are definitely not the same. So, I pretty much didn’t eat pancakes for years (sad).

A few months back, a friend of mine posted about “protein pancakes” and I thought it was interesting. The ingredients seem weird, but I wanted to give it a try. Healthy pancakes seemed impossible to me, but I tried it and I’ve made a few modifications.

The recipe:
Coconut oil (for cooking)
1/2 cup oats (I use Bobs Red Mill Gluten Free Rolled Oats)
1/2 cup cottage cheese
1/2 cup egg whites (if you don’t have egg white substitute, I’ve found that 4 large egg whites works well)
Cinnamon (to taste, I use a pretty generous amount…at least 1 tsp)
1/4-1/2 cup Blueberries (fresh or frozen)

Put oats, cottage cheese, egg whites and cinnamon in a high speed mixer (I use one of those magic bullet things – mine is off-brand – and its perfect). Mix until smooth. Stir in berries (by hand).

Place a pan on medium heat and put in the coconut oil. I know this means you can’t use a griddle…but trust me…the coconut oil brings a flavor that is totally worth it.

Pour in 1/2 of the batter and spread the blueberries around (especially necessary when using frozen berries). Cook like a regular pancake! It will get the air bubbles and “dry” around the edges the same way. I’ve eat mine as is (no toppings) because I’m cutting out sugar, but give mom her favorite toppings on these. I’m sure she will love them!

I’ve been thinking about playing around with other fruit, like banana or raspberry or peach. Did you try any variations you liked? What did you (or your mom) think of these?

And, again, have a happy Mother’s Day!

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