Tag Archives: refractory

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?