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Refractory Celiac Disease
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So I have been gluten free for a little over 8 months now and I am very strict to not cheat and minimize any chances of cross contamination. When I first started the gluten free diet I saw some improvements, but then these stopped and even regressed. I have continued to lose weight and my gut has not been a happy camper. My GI has said that I most likely have refractory celiac disease and expects to do a combination steroids and constant work with my dietician.

The point of this being, has anyone had a similar experience and is there anything else I should know or expect?

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Your GI based this new diagnosis on a second biopsy? Were you tested for SIBO at the time of your biopsies?

Depending on the damage first found (I had a Marsh stage IIIB), it can take up to three years for complete healing. First, you must consider age (kids tend to heal faster) and then you must master the gluten free diet. That in itself, has a steep learning curve. Cross contamination is a huge issue. Do you ever eat out? Are you eating whole foods or buying a lot of processed foods? Are you eating enough fats and protein?

Many of us on the forum have discovered that we have temporary or permanent food allergies or intolerances due to villi damage (e.g. milk). Are you keeping a food journal that could help identify intolerances? I found that Xanthan gum found in bread gives me comparable gluten effects (starting with a pinching stomach). The weird thing is that is does not bother my husband who can not eat gluten either.

We are all different. It takes a bit of detective work and patience to heal from celiac disease.

Welcome to the forum and check out our newbie thread under the coping section!

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Here is a study that you can show your GI: http://www.biomedcentral.com/1471-230X/13/40

 

"Here we describe the effects of a 3-6 month diet of whole, unprocessed foods, termed the Gluten Contamination Elimination Diet (GCED), on NRCD. We aim to demonstrate that this diet reclassifies the majority of patients thought to have RCD type 1 (RCD1)."

 

 

 

.

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http://www.cureceliacdisease.org/archives/faq/what-is-refractory-sprue

 

 

This doesn't say much, but it links to all the things your doc should rule out before calling it "refractory". And that list assumes that you have been re-biopsied and still have damage.   Can't find the one that says it needs to be 1-2 years with a still positive biopsy.  But, just because you are having some GI issues, doesn't mean you have refractory Celiac.  

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I had continued celiac disease damage for three years post complete gluten removal. My annual endoscopic biopsies actually got worse the first year...no change second and third endo...finally has minor improvement at my fourth annual endo.

I do not have refractory celiac disease. I do have other issues that were preventing healing.

If your doctor diagnosed refractory at eight months, I would get another opinion. The steroids used to treat refractory celiac disease can cause other problems so should not be taken unless all other possible causes of no or slow healing have been ruled out.

Are all your celiac antibodies in normal/negative range?

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Thank you all for the input. I thought it seemed early for that diagnosis, I am now waiting for a second endoscopy to see what the change is in my villi. I'll be the first to admit that I'm still getting a hang of getting enough nutrients and minerals on my limited diet. But I did test negative for SIBO and my antibody levels seem to be where they should be. As far as cc I don't eat out and I keep my cooking to specific pans that are specifically gluten free. I will be asking my dietician to help me test for other food intolerances (I know dairy is one for sure!). Is there anything else I should ask about when I go in next?

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Thank you all for the input. I thought it seemed early for that diagnosis, I am now waiting for a second endoscopy to see what the change is in my villi. I'll be the first to admit that I'm still getting a hang of getting enough nutrients and minerals on my limited diet. But I did test negative for SIBO and my antibody levels seem to be where they should be. As far as cc I don't eat out and I keep my cooking to specific pans that are specifically gluten free. I will be asking my dietician to help me test for other food intolerances (I know dairy is one for sure!). Is there anything else I should ask about when I go in next?

 

The test for SIBO is not very accurate...forget the percentages...you can google them.  With or without SIBO, probiotics are a very good idea for the healing digestive system -- as long as you can tolerate them.  Digestive enzymes can also help during healing.

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Eight months is not that long and depending on your age I wouldn't consider that long enough for a complete gut healing.  Children heal quickly.  The older you are and the sicker you were, the longer the healing process.  Two years is not uncommon.  Before you can consider refractory you need to consider everything - age, how sick where you, is your home total g.f or is it shared, (as mentioned above) do you eat out or eat any processed foods.  Consider that added ingredients in processed foods can contribute to making you feel sick and cause glutened type reactions. 

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My first doctor started throwing around the refractory diagnosis possibility very early too because I actually got much worse on the gluten-free diet (I have been dairy free for many years before I even knew what celiac was), but I switched hospitals to U of Chicago and we finally figured out that I have fructose intolerance (malabsorbtion in the proper term I believe). I have had to cut out ALL fruit, the fructans group, and sweeteners. I pretty much only eat meat, potatoes, rice and corn very occasionally, and the non-fructan veggies. That has drastically helped my circumstances.Try a low fodmap diet with the slow reintroduction it may help. I also second getting checked for SIBO or just treating it if your doctor thinks that's ok. I tried treating the SIBO it wasn't my problem but it helped me know that was not a concern at the time.

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