Refractory Coeliac Disease

I have just been diagnosed with RCD type 1. I am extremely careful about cross contamination so that has been ruled out. Three years of gluten free and my villi have not grown back. St Thomas now want to start me on steroids and immune suppressants- long term I believe. I have read about success of the elimination diet for RCD in the US and would like to try this for 6 months. It would be tough but surely better then steroids and Aziothprine. Has anyone else out there been diagnosed? There is little or no patient support for coeliacs who are not healing..

thanks

11 Replies

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  • Hi,

    can't help you with the specifics of RCD but you may still be eating some foods which damage the gut. I continued to have various autoimmune issues after giving up gluten. I now keep to a paleo diet eating no grains, legumes (beans and pulses), or white potatoes. Potatoes and beans to excess led to my having a frozen shoulder and angry rashes, followed by mental health issues. I had to learn the hard way! If only I'd read "The Paleo Answer" by Loren Cordain I could have learned why these foods and substitute grains are damaging to the gut. I have just completed a year of better health than I can remember. Good luck! Hope you find your answers. C

  • Hi

    If you type 'refractory' into the search bar, top right, you will find past discussions about this.

    What does the elimination diet entail? If it means removing all processed food from your diet, many people on here have found that's a very good idea.

    Hope you can find an alternative to the medication.

  • By all means try to stay of the steroids. It took 4 years for my villi to recover. I was diagnosed at age 57 and it is now known that the older we are diagnosed the longer time it takes for the villi to recover. BTW I was put on the steroids for a month but my kidney function shut down. God luck.

  • I echo what the others say... All grains contain similar proteins to gluten, including supposedly safe grains like corn and can be cross reactive with gluten. Corn and its byproducts are found in many processed foods that we are told are safe, and while present in tiny quantities, those quantities soon add up in a diet based on processed foods. Also, other foods have been shown to cause villus atrophy, including things like chicken and soy, so maybe you have a problem triggered by a different food. If it was me, I would want to exhaust all dietary possibilities before going on steroids. I hope you can find someone medical to support you so you can do the elimination diet.

  • Hi malachy30, this must be really frustrating for you knowing that you're a coeliac but not responding to a gluten free diet, so poor you.

    Now in other countries they advise coeliac who still have issues to avoid foods within codex and wheat derivatives that are below codex but can trigger a reaction in a minority of coeliac. And dextrose, maltodextrin and other artificial sugars tend to be wheat deriv's in the EU even citric acid and caramel colour can be derived from wheat, so this is worth bearing in mind.

    An elimination diet sounds just the ticket and what have you got to lose, I'd recommend that you do it under the supervision of a nutritionist or dietician to make sure that you are getting all the vital nutrients that you body needs. All the food that we eat is broken down into 23 base amino acids and very few foods contain all of them but quinoa does. Our bodies convert the food we eat into 15 of these amino acids but the remaining 8 have to come from the food that we eat. So quinoa is a complete food.

    Here's a good outline on how to go about an elimination diet:

    precisionnutrition.com/elim...

    Lastly you are in good company on here so good luck and please let us know how you get on,

    Jerry

  • Hi there, I also have RCD 1 diagnosis and very similar story and frustrations. Can't reply in full now but will asap...have done loads of research so happy to share in case useful. Nicky

  • have a look at purehealthclinic.co.uk & associated sites by Micki Rose, truly gluten free, there is lots of information on there about what other foods may be causing the problems. I've found the information & resources on there invaluable. it's worth a try before resorting to the steroids etc. good luck

  • thanks all and good to know I am not on my own! Today I have my first follow up apt and will find out more. My fear is that there will be no support from the hospital to try the elimination diet and that they will tell me their preferred treatment is the conventional medical one. That is not only scary but also time and energy intensive as you have to do all the research yourself and find emotional support too. While you are working and have young children this seems daunting! One day at a time I guess. Today is about fact finding!

  • Hya, now it's your body and your decision if you have decided that you've tried a gf diet for 3 years and want to go one step further and want to try an elimination diet before you go on steroids and immune suppressants. So you'd like to see a dietician please.

    I think that you've done really well sticking to it for 3 years without results so if an elimination diet is what you want then it's up to you to make this crystal clear. So I'd be assertive and ask about side effects of immune depressants and would you be more likely to get infections.

    When I was first diagnosed I was on the verge of pernicious anaemia and they gave me 500mg iron tablets and told me to take 4 a day when around 20 mg is our daily requirement of iron. And boy did they upset my stomach so when my Dr gave me a prescription for another brand, I smiled sweetly and decided to eat myself healthy and was better after 2 months with no supplements. My Dr was doing what they had to do and I did what I felt was best for me.

    So the point I'm making is that 'we' all have choices and it's your body and your choice, that's my 2p's worth and good luck tomorrow.

    Jerry.

  • Hi again Malachy

    Hope your appointment as well as expected and you were able to get some clear information on your options, as others have said it's your body and your health and no one can make you do anything you don't want to do.

    My key advice is to really do your homework and go armed with as many facts and papers as you can...Pubmed is a very useful resource and I got taken much more seriously in terms of my challengs when I had quality research to back up my points. What's important to know re RCD or any complicated CD is its poorly understood nd there is little evidence that suggests any of the suggested treatments are very effective. Also absolutely key is that long term studies show many people do not heal in the 6-12 month window that we are told. Here are some papers for you to look at:

    Coeliac Disease, How complicated can it Get? ncbi.nlm.nih.gov/pubmed/206...

    Histologic follow up of people on a GFD - Slow and Incomplete recovery ncbi.nlm.nih.gov/pubmed/122...

    Cross Reactions betwee gliadin and different food and tissue antigens - Vojdani and Tarash - can't web page but google and it comes up

    Celiac Disease: Epidemioglogy Pathogenesis, Diagnosis and Nutritional Management - Schuppan et al - ditto

    A couple of questions and comments for you based on my experience with RCD

    1) Are you still symptomatic/feeling unwell? If so I would highly recommend trying FODMAPS which sorted my unbearable gastrointestinal symptoms within a few weeks. I have largely used paleo + FODMAPs and it works well for me. Also worth a look at is the Specific Carbohydrate Diet which is said to be effective in many cases of CD where things don't improve on a GFD....it shares some common theories with FODMAPS but comes at it from a different perspective. If you are not symptomatic its important to know that most studies show that immune suppression & steroids are not very effective at improving villous atrophy, they are more effective at symptom managment. I was intially told I should have the treatment but argued against it on that basis and my Consultant agreed it was actually not appropriate

    2) Are your antibodies eg tTg, EMA normal? In most people with RCD their antibodies have normalised, if they haven't it can be suggestive of other things. While its true that most cases of tTg elevation are due to gluten ingestion or contamination not all are...after 4 years of the strictest possible GFD and completely erratic tTgs normally higher than diagnosis (but negative EMA!) I can absolutely confirm there are other causes. I've investigated hyper gluten sensitivity (less than 20ppm), other autoimmune, giardia and most latterly cross-reactivity. Also mentioned above this is a very new theory, for CD anyway, mostly coming from the US - see Chris Kresser and Paleo Mom on this. There is now a lab in the UK Regenerus who can test for cross reactive foods that might be mimicing gluten and causing the same immunlogical response.

    In my case after 4 years I still have atrophy and high antibodies...and hence my RCD diagnosis so it's not a great picture on paper but with lots of attention to a really nutritious low fermentable carb diet, avoiding eating out unless its a really special occasion I feel fantastically well, am a normal weight, rarely have symptoms and am healthier than any of my friends and colleagues... I am still determined to find the cause of my antibody issue as there must be an explanation and am looking at the cross-reactivity theory myself but am also trying to just get on with life and not get caught up in the label.

    Anyway I hope this is useful. It may be that the treatment is appropriate in your case but do explore all avenues first. Like you if I had been serioulsy faced with the prospect of treatment I would want to try the elimination diet first - though you might find trying paleo+FODMAPS would achieve a similar outcome in a more pleasant way.

    Good luck and take care

    Nicky

  • I was in a similar situation 1998, I was supervised by a dr and dietitian, and ate very plain gluten free diet , felt too nauseous for anything else, but was also prescribed osmolite hn daily, creon ,metamucil, neurobion injections,( neurobion injections are vit b1 100mg vit b6 100mg ang vit b 12 and not registered in UK made by Merck, surgery here gave them to me as long as I brought them, I used to bring back some from SA where they are freely available and I don't need them anymore )This was all on medical aid in South Africa, as my GP very insistent on my needs, it was very expensive but I did heal even though it took ages.

    I doubt whether you would get this in UK, where I now live, Here now my GP surgery will no longer give me prescribed bread, say too expensive , though the borough says I am entitled.

    You may get a food supplement though

    I read all the literature I could on Coeliac disease, as a nurse I had access to the university library in Cape Town so to many SA, UK and USA publications, Marsh's Book is excellent especially about the classification of the stages of villi,

    I just didn't give up, and I was fortunate in my GP and Dietitian,

    You could also write to Coeliac UK for advice

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