Category Archives: Medical Tests

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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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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Mayo Clinic Tells About a Pill That Could Help Celiacs Consume Gluten

If you have celiac disease, you know that there is no magic pill you can take that will allow you to eat gluten without damaging your intestines. At least, not yet

Here is a video that just came out from the Mayo Clinic (a little slow and dry…but considering the source that makes sense) about a recent study on Larazotide Acetate – a pill that could help people with celiac disease consume gluten.

What do you think? Would you eat gluten again if there was a pill that came available? Or, would you stay gluten free?

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When were you diagnosed with celiac disease?

I was diagnosed (officially) with celiac disease on July 30, 2010. It was a Friday. Yes, I remember the day and everything about the lead up to that moment when my doctor’s office called to confirm what I already knew – I had celiac.

Since then, I have been researching and writing and changing my life for the better. Around me, I hear from friends, family, acquaintances, people in the coffee shop, etc. that they or someone they know was just diagnosed and doesn’t know what to do next. Obviously, this has been around for years, but I hear all the time that it seems like diagnosis of celiac has been increasing dramatically in the last five years. It sounds right to me, but I wasn’t really aware of this before my diagnosis. I remember saying “You think I’m intolerant to…what?” When the nurse called me to discuss my blood work. I actually had to have her spell gluten for me. So funny to think how my life has changed. A word I had never heard of three years ago I say 10 times a day now.

Anyway, there was recently an article on the rate of diagnosis of celiac disease in the Huffington Post that contradicts what I have always heard since my diagnosis. It says it went up dramatically from 2004-2008 and has plateaued since then. The exact opposite of what I’ve heard.

I was diagnosed during “the plateau” and I’m curious how many of you were too. Please, let me know so we can test their theory.

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Did Your Dentist Glutenize You?

Did your dentist glutenize you?

About a week ago, I went to the dentist for the first time since I was diagnosed with celiac disease. As a side note, I know that is a very long time to wait between dentist appointments, but that is another story.

Any savvy individual with celiac disease knows that gluten can be found in many things – not just bread, pasta, cake or other obvious foods. So, we are accustomed to mentioning it pretty much everywhere we go. But, have you ever asked about it at your dentist? If not, you have probably been glutenized without realizing it.

I was at that point in the teeth cleaning with a hygienist asks what flavor of toothpaste I would like to have been used. She listed off a long assortment of flavors including bubblegum, cherry, cinnamon, and chocolate mint and my response was, “As long as it’s gluten-free,” In a singsongy, half-joking tone, because we had already talked about my celiac disease during the appointment. (And, I have gluten intolerance listed on my file at this particular dentist, and there are multiple employees there that are also gluten intolerant.) Much to my surprise, she said “oh, you can’t have any of these, ill get you the gluten-free one.” My brain was screaming, but I remained calm. I had honestly never thought that the toothpaste would contain gluten, or after everything leading up to this point she would not automatically offer me only the GF choice.

In reality, this woman has the same conversations with eight different people every single day and she was just going through the motions, but it was still a little disconcerting. The moral of the story? Always bring it up. Don’t be afraid or embarrassed to ask for what you need. Even if you are sure they already know, better safe than glutenized.

Does your dentist even carry gluten free toothpaste options? Have you ever asked? What other shocking gluten discoveries have you made?

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Yup…it’s celiac

This is one of those moments where you think, “Where do I start?” I understand it’s cliche, but a bunch of wise people have said that it is best to start at the beginning. So, I will.

I have been feeling sick for pretty well as long as I can remember. Not so sick that I couldn’t function, but just enough to be annoying. Lethargic all the time – no matter how long I slept, migraines (diagnosed nearly 10 years ago), skin rash (which I assumed was a simple metal allergy) that has kept me from being able to wear my wedding ring for the past year, stomach pains and problems, the list goes on and on. I didn’t really notice how annoying it all was until I looked at it collectively and realized something was really wrong.

I went to the GI doctor (Digestive Health Specialists in Gig Harbor/Tacoma – they are the BEST and I would highly recommend them to anyone needing anything gastrointestinal) and had a whole range of tests done and was scheduled for a colonoscopy (more information on that slice of heaven in another post). My bloodwork showed an “intolerance to gluten products” and I was set up with an upper endoscopy to confirm the diagnosis of celiac disease with samples from my small intestine. Last Friday, July 30, 2010 I got the call that I do in fact have celiac.

So, what does that mean? Basically, nothing with gluten (wheat, barley and rye products) forEVER. Even small amounts of wheat products or items that are cooked in a kitchen with flour floating around are enough to make me sick. So, that means lots of strict dieting and paying attention to every label and ingredient when buying groceries – eating out will be a challenge too. The good news is, there are tons of resources out there (some good and some not as good) with information on foods that are gluten free (GF), restaurants with GF menus and more.

Some interesting information about celiac disease:

  • It is one of the most common autoimmune disorders – approximately 1 in 120 people have it.
  • More than 90% of cases of celiac are undiagnosed – even though a mouth swab or blood test can show if you have gluten sensitivity or intolerance.
  • The symptoms are diverse and vary from one person to the next – some people show no symptoms, which is why it is likely to go undiagnosed.
  • There is a link between celiac, wheat allergies and migraines (why didn’t anyone suggest this to me before!?) and it is common that many people with migraines can eliminate a good number of their headaches if they stop eating gluten.
  • Celiac is genetic, so if you have it, it is very likely that your siblings, children or parents could have it as well.
  • Even though celiac is incurable, it is not intolerable to live with and if you control it isn’t life threatening.

I have been on the GF train for almost one week, and it isn’t too terrible. There are a lot of changes and it is definitely different, but I will be documenting it all in this blog to help the others with celiac disease, their friends and relatives or anyone who is going gluten free. Sidenote: my friends and family have been AMAZING through this time, and a support system is absolutely essential to being successful at surviving this transition and the new normal. I am researching the bejezus out of this thing and I know a lot about the disease already. If you have any questions, need a support system or need suggestions, please feel free to ask!

My celiac life is an open book.

Melina

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