Category Archives: Changes

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: Brian Forester from Now Foods – Natural GF Options for Your Diet

Great Natural Foods To Incorporate Gluten-Free Choices Into Your Diet

So, you’ve decided to start incorporating more gluten-free choices into your meals. Great! And while that might require you to start rewriting your favorite recipes, there are plenty of naturally gluten-free foods that you can easily incorporate into your new diet without causing you to wrack your brain every time a meal comes around.
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Gluten is the protein found inherently in the endosperm of wheat, rye and barley—composed of two smaller proteins glutenin and gliadin. For people with Celiac disease or gluten sensitivities, gluten can cause bloating, cramps, diarrhea, constipation, fatigue, pains and other ailments. Cutting gluten from your diet can relieve these symptoms, but as gluten—and many of the foods that contain gluten—offer nutritional values in protein, fiber and sugar, they need to be accounted for in your new diet. Luckily, there are many natural food solutions.

As gluten-free means avoiding products made with wheat, barley or rye, the bulk of your meal replacement is going to exist in your grains and breads, which can be tricky as many meals use these grains as a base. For natural, gluten-free options in this category, try unbleached, unprocessed rice (brown, wild or flour variants), buckwheat, almond flour, quinoa, flaxseed, tapioca, millet flour, soy, sorghum and finally, one of your biggest and best alternatives, corn and potatoes.

Corn and potatoes are likely to be your easiest transition from wheat, rye and barley as many grains—tortillas, breads, and pastas—are already widely available in corn and potato options.

Dairy will most of the time be gluten-free, although some varieties of cottage cheese, yogurt, cream and ice cream sometimes contain gluten additives. Blue cheese, unfortunately, does contain gluten. Always check the ingredients on the label to make sure there aren’t any gluten surprises.

Hummus is a fantastic naturally gluten-free food that can be worked either as a side or as an appetizer into almost any meal.

Luckily fruits and vegetables are all gluten-free, which you’ll likely be eating more of in order to make up for the loss of fibers and vitamins found in gluten products. Fresh fruits and vegetables will also give you natural sugar alternatives in addition to being gluten free; supplying your body with better and more efficient energy reserves.

Meat, too, is gluten-free unless breaded—like fried wings, chicken parmesan or meatloaf; all dry beans are gluten-free as well. Thankfully,there are many great recipes out there to make gluten-free versions of classic dishes. Check out this recipe for a delicious, gluten-free meatloaf http://glutenfreecooking.about.com/od/entrees/r/glutenfreemeatloafrecipe.htm.

Desserts are going to be one of your hardest substitutes as so many pastries and treats contain gluten. Fruits are a great natural dessert, but if you need to have something a little more exciting you can use butter, margarine, peanut oil or butter and even olive oil—which offers great opportunities for infusing flavors. Try putting blood orange-infused olive oil on a salad with mandarin oranges and cocoa-roasted nuts and tell me it’s not a dessert!
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Going gluten-free doesn’t mean quarantining yourself off from the rest of the eating population; it simply means making some key substitutions and refraining from foods that, as it happens, are naturally not recommended as part of a balanced diet (i.e. fried foods, processed sugars and flour, and many desserts).

About the Author:
Brian Forester is a health and wellness writer in the Chicago area. It is his goal to help people learn more about healthy natural foods and incorporate them into their diets. Companies like Now Foods offer healthy options to improve wellness for everyone with NOW Personal Care.

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Filed under Changes, Cooking, recipes

Is Rice Gluten Free?

For those of us that have been gluten free for a while, this seems like an obvious question. However, I want to make sure this blog helps everyone – especially the newly diagnosed – so I’m adding in some of the basics.

I get asked all the time by non-celiacers about different grains to see if I can eat them or not. Very commonly I get the question, “Can you eat rice?” Or, “Is rice gluten free?”

I remember when I was first diagnosed, when I started to hear what gluten was, I had the same thoughts. This also led to thoughts/questions about corn, potatoes, quinoa, spelt and many more. I will have more posts about those grains (and others) soon.

In short, yes, rice is gluten free. You are safe eating it, but watch out for accidental cross contamination. You done want to boil rice in a pot that just had whole wheat pasta or something. And, traditional soy sauce is not gluten free (neither is teriyaki sauce – which is comprised of soy sauce and other ingredients) but there are alternatives. I use gluten free tamari and can’t tell the difference. It is available at almost any grocery store in the Asian foods section.

So, eat all the rice you want and watch out with eating in Asian restaurants (because of the soy sauce). It isn’t traditional Chinese food, but PF Changs is a great option for gluten free. They use separate bowls and plates and cook with different pots and pans – gluten free shrimp fried rice is one of my favorites! They have complete meal options and a large gf menu.

Do you have any gluten free recipes using rice that you love?

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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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Filed under Changes, Medical Tests, Nutrition, What is Celiac Disease?

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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Gluten Free Flour Conversion Chart

So, I cannot claim this because I didn’t actually make it and I can’t confirm the accuracy of the ratios because I haven’t tried making anything using them yet, but this chart is awesome! I saw someone that shared it on Facebook and there is no author, but I just had to share. I hope it helps you!

Do you use a different conversion chart you would recommend? Please share it!

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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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Filed under Changes, Daily Life, Nutrition, What is Celiac Disease?