Category Archives: What is Celiac Disease?

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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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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USA Today Asks, Is Gluten Free Just a Fad Diet?

So many people are talking about going gluten free these days, that many people assume it is just a fad diet and not a medical diagnosis. Here is an article from USA Today asking Is Gluten Free a Lifestyle or a Diet Craze?

What are your thoughts after reading it?

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Should We State the Obvious?

I have heard people complain when they see a food that is “obviously” gluten free advertise this information on their packaging. Their argument is usually something about consumers being smart enough to “know” that mustard or frozen peas are gluten free just by their nature.

I disagree.

For someone with celiac disease, 1/4 tsp of gluten in 24 hours is enough to cause a reaction. Since gluten is more than just “wheat” (wheat, barley and rye) how do you really know? Maybe, someone thought barley malt added a nice flavor to that mustard – or lightly dusted those peas with flour to make them less likely to stick together. Or, if they were in a facility that processes wheat, that could be enough.

I like seeing “gluten free” on any label because to me, it means the company at least thought about it. Of course, seeing the certified gluten free logo means it is absolutely the one to buy.

For me, if one product (regardless of what it is) says “gluten free” on the packaging and the one next to it doesn’t – there is no question which one i will buy. And, I will probably talk about it here on my blog.

I say, no question. If your product is truly gluten free and you make an effort to ensure that – put it on the packaging. If its not gluten free and you just slap it on there…beware the wrath of angry celiacs everywhere.

Where do you stand on this debate?

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Gluten Free Tip Sheet

Recently, I was asked to create a Tip Sheet for a cookbook that is going to be published here in Washington for the eWomenNetwork (which I am a proud member of). They are a really great organization and always have gluten free options available for me at luncheons!

Anyway, I think the Tip Sheet turned out pretty good and thought I would pass it along:

Cooking for someone that is Gluten Free isn’t as easy as many people would like to think. Gluten is much more than just “bread” – it is a protein found in wheat, barley and rye. And, many people, like those with celiac disease have an intolerance so severe that they can’t eat food that has even touched something with gluten in it (including the spatula, your hand, etc). It is important to know who you are cooking for and what their needs are before you buy/start cooking. Here are some tips to help if you are cooking Gluten Free (in alphabetical order):

  • Alcohol – beer is pretty much off the table, but there are GF options available. Wine is ok, along with most hard liquors. However, any of the “malt beverages” (Mike’s, Smirnoff, etc) in the bottle are not Gluten Free.
  • Anything powdered – powdered items can be tricky across the board – seasonings, gravy mix, and other items often have wheat flour in them even when you don’t think they would. You can’t trust any brand specifically, or assume that just because you have bought powdered gravy before that all gravy mix is Gluten Free – sadly, it isn’t that simple. Read your labels!
  • Bisquick and Betty Crocker – these brands now offer Gluten Free options – Betty Crocker also has four mixes (chocolate cake, yellow cake, chocolate chip cookies and brownies). These, and the Gluten Free Bisquick can be found at most supermarkets. Note, they will have different instructions than non-GF items.
  • Bread Crumbs – there are many GF breads out there – some much better than others. You can make your own bread crumbs easily using GF bread. Udi’s and Rudi’s are two brands that are similar to many “regular” breads.
  • Broth – some broths you buy in the store have wheat in them – read labels!
  • Cross-Contamination – make sure to use a clean working area when making GF food. Wash everything to avoid having something you were cooking earlier get on the food you are making now – ¼ tsp is enough to cause a serious problem for people with celiac disease. 
  • Cheese – there are a couple of things to watch for: blue cheese isn’t GF, because it comes from a bread starter. For those that are less sensitive, this could be ok. Also, beware of pre-shredded/sliced cheese as flour can be used to keep it from sticking together. It is best to shred/slice yourself when possible since this isn’t listed in ingredients.
  • Dressing and Ketchup – many dressings are thickened with flour – and some condiments are too – some ketchup is GF and others aren’t. Read those labels!
  • Flour and Cornstarch – for items like crisping chicken, crumbled desserts, or other things that call for a small amount of flour – cornstarch can be substituted. Use about ½ the amount of cornstarch as you would flour.
  • GF Pasta – there are many kinds of pasta that are GF, including those made from rice, quinoa, corn and potatoes. Note: spelt is not GF and “egg noodles” still have flour in them.
  • Marshmallows – you know the light powder on the outside of a marshmallow? This is often flour to keep it from sticking while cooking. There are GF marshmallows if you keep your eyes open and read labels. 
  • Oatmeal – oats are controversial in the GF community. Some people who are Gluten Free can eat oats and others can’t. If you do buy oats, be sure to get them where they specifically say “Gluten Free” on the label – like Bob’s Red Mill. If they aren’t they are often processed with wheat flour and covered with cross-contaminates.
  • Oil – if you cook with oil – make sure you change it before cooking GF items. The residue of items that were breaded (even in a deep fryer) can cross-contaminate any GF items for the very sensitive.
  • Other Grains – There are many other grains that don’t contain gluten. Rice, corn, potatoes and quinoa are all GF. Spelt, couscous, egg noodles, and many others are not.
  • Read Labels – even if it seems like it should be GF (no matter what it is) you never really know until you read EVERY ingredient on the label. Some things will even say “Gluten Free” across the front of the box and say “may contain wheat” in the ingredients. Also, beware of anything with a malt coating – malt coatings come from gluten.
  • Sausage and Ground Meat – many ground meats (including sausage) have a filler of flour or breadcrumbs. Labels will tell you if this is the case or not.
  • Soy Sauce – regular soy sauce is not Gluten Free, but there are options for GF soy sauce which taste almost identical. Some buy “GF Tamari” and now, many well-known brands (including Kikkoman) have a GF option.
  • Tortillas – while flour tortillas are a big no-no for the GF people out there – corn tortillas are an easy alternative (they are better for you, too!). Just make sure to read the label to make sure it doesn’t have a wheat filler.
  • Tortilla Chips – most corn tortilla chips are GF. What to look for? Corn or flour. Also, some chips are cooked in the same oil as other things that are breaded, which means they can’t be eaten by GF people. Other chips are hit or miss as well – read the labels to be sure, and be especially wary of things with a seasoning on them. BBQ chips often are not Gluten Free, but Frito’s are.

Do you have any other tips? Did I miss anything important?

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