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.



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

12 responses to “What is Refractory Celiac Disease?

  1. Janet Rörschåch

    I am holding good thoughts for you. May it be an “easy” fix, as oppose to the above options.

    I’m sure you’ve checked, but are your beauty products gf?

  2. Sorry you’re not feeling well! I’ve found that I’ve needed to cut out all grains. It seems that some celiacs also react to the proteins in other grains. I came across this write up on Google+, you might find it helpful:

    Q: How can I find out if foods other than gluten are triggering an immune response?

    A: Cyrex Labs Array #4 tests for cross-reactivity or sensitivity to 24 foods.

    Up to 82% of celiac disease patients produce antibodies to other foods. When cross reactivity occurs, the body is mistaking another food for gluten and reacting accordingly. The body may also react to foods which are eaten for the first time ever on a gluten-free diet (such as quinoa) as though they were foreign invaders. This might be relevant to the ongoing immune response displayed by some patients with gluten sensitivity and celiac disease (who are not consuming gluten).

    If you have discovered that you are celiac or sensitive to gluten, yet a strict gluten-free diet is not producing the results you had hoped for, the concept of cross-reactivity may be a missing-link in getting you closer to feeling great.

  3. I had problems with my oldest, who was 8 at the time. She kept breaking up and showing symptoms of gluten ingestion. I took her to our nutritionist. The problem was the pop from the fountain. All fountain drinks come in bags lined with a bi-product of wheat. That solved our problem. I did not know that wheat was used to make plastic liners. Just in case!

  4. val bonotto

    check for casin in your diet aswell,, casin is a know trigger for us celiacs. it will bother your tummy and its in everything, even medications and makeup. when i eliminated casin from my diet it really helped me out.

    • It is definitely in my diet. I’m still having dairy – for now. Waiting to see what the GI says after my test results come back so I don’t cut out everything unnecessarily! I’m expecting it’ll be soon to cut out though. 😦

  5. Kayci

    Hey! I’m going through about the same thing. I’ve been researching up and down. I would check out what Tina Turbin has to say. I’m aware that you’re original post was in June, and that it is now October. I’m hoping that you’ve been able to begin feeling fabulous again, but in the off chance you haven’t, I think the, paleo zero grains whatsoever diet, could have the potential to make a real difference.



    • Thanks kayci! I did paleo for about a month and it did help. I’ve cut down on grain and dairy, which is helping me feel better. I hope you are feeling better as well!

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