I have refractory coeliac disease

My brother came across this amazing website a few months ago and wondered if anyone could help. I was diagnosed with coeliac disease in 2009. This week I have a confirmed diagnosis of refractory celiac disease. I quote from consultants letter." Your endomysial and ttg antibodies are both negative confirming there is no signifcant gluten in your diet. Biopsies taken from the small bowel however do show signs of coeliac and therefore I think your diagnosis of refractory coeliac has been confirmed beyond doubt " I have been prescribed steroids and mercaptopurine (chemotherapy tablets) for the 3rd time in 2 years. They sort me out for while until it comes to reducing and then things go awry. A question of finding the right dose. I have done a bit of research but my brain is rather fuzzy at the moment.

Does anyone who is reading this have it, know anything about it, or can advise me in any way. I want to know why this happens and what the future( medication wise holds). I am in the north of scotland and the next visit to see the consultant is 6 weeks away. When this was first suspected she tried to find someone to refer me onto and could find no one with an interest in refractory coeliac disease apart from one consultant in the Cambridge area who I might have to track down. Thank you for reading this.

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  • Hi there Dillias, firstly this comment interests me:

    " Your endomysial and ttg antibodies are both negative confirming there is no signifcant gluten in your diet.''

    I would try and avoid even these traces of gluten and if you are getting codex wheat products on prescription or eating breakfast cereals with low levels of malt or pure oats I'd avoid these in the first instance. And I would avoid wheat derivatives that also can contain traces of gluten, like maltodextrin derived from wheat which's classed as safe for coeliac but is known to cause issues for some coeliac and does contain traces of gluten.

    If this does not improve your health I would then consider a paleo diet or at the very least try to prepare all your own food with naturally gluten free foods and eat plenty of fresh fruit and veg and avoid processed foods with all their additives.

    Now this topic has come up on here before so please check out this link from the archives of GFG:

    glutenfreeguerrillas.health...

    Now if you want to search the archives on here just go to the search box at the top right hand side of the GFG page and type in the key words.

    As for the med's I'm sorry but I can't help there as I don't take any med's even tho' I am very sensitive to gluten and I have to avoid many foods clearly labelled as gluten free and my philosophy is that 'I eat myself healthy'

    Lastly well done for joining us as you've come to the right place so if you have any more questions than you just ask away. And we will be interested in how you get on, so please keep us informed and I hope that you start to feel better soon.

    And good luck,

    Jerry

  • very much agree with the above here, it's extremely important that you do something like the GAPS diet/Specific carbohydrate Diet/Paleo diet. Otherwise you won't get very far...

    Definitely do not rely on the flours and substitutes designed for coeliacs - only some people can tolerate those and even then i don't believe we should be eating that way. You should try to become grain free. Sugar and coffee is going to be damaging to you also.

    it's not fun i know and it makes you feel like you're battling a never ending war but when you start to feel better you'll just be glad you have your life back and then it all makes sense. i promise!

    i don't do well on just cutting gluten out either and i have other issues but these are the three protocols that have helped me.

    the medication will only do so much it's your body that needs the space and the environment to heal itself - i hope you don't have to stay on meds for much longer.

    i also recently have discovered that when i get hot bowel cramps taking a full teaspoon of vigin organic coconut oil dissolved in a small amount of hot water - just knock it back - will ease my cramping - but also coconut oil is so good for you and full of nutrient that perhaps it will promote healing. The fact it's an oil and very soothing maybe our guts/bowels like that to! worth a try.

    really anything is worth a try in your case but give it time do the diet and extras long term - the longer you do it the better a chance at healing yourself. i'm a great believer in the body having the power to heal itself but you can't get in the way you have to help in every way you can.

    good luck xx

  • Hi Dillias

    Being diagnosed with coeliac is a life changing event. I was diagnosed some years ago but late on in life so sympathize with your situation.

    I don't live in UK but visit quite a bit . Over the years I have noticed a great improvement in availability of GF foods. However when I return to Australia ,where I live, and have my regular blood tests done soon after, there is often a rise in my results highlighting the fact that I have come into contact with gluten even though I am always very careful what I eat. Therefore I have assumed that there may be some contamination through less stringent levels of gluten detection than used in Aus/NZ. I also note that gf Oats is available. I find this a bit of a contradiction in terms. They may be oats uncontaminated by wheat, barley or rye but my specialist has strongly advised against eating them.

    Also when I was first diagnosed I was also put on an exclusion diet as I had developed food allergies. This was tiresome but in the long run was helpful. This was a version of the lamb and cabbage diet ie low amine/syllicilate/no additives. I think it certainly helped to speed up the healing process although I doubt It will ever be back to 100% as I was so late in being diagnosed.

    Also two things that I have found invaluable are soda water and abc yoghurt when I have a bad time with my digestion.

    Hope that might be helpful and that you get the advice and treatment that you need

  • Hi Dillas

    I'm sorry you have RCD. I'm also sorry you'll have to travel extensively for your clinic but I understand that Addenbrookes (Cambridge) is the refractory coeliac clinic for the UK. Some others on here see Professor David Sanders in Sheffield, (see other refractory posts) but his clinic is a specialist coeliac clinic not a dedicated RCD clinic.

    I understand that the treatment for RCD is a steroid immune suppressant (again, see other refractory posts for drug used by others).

    As others on here have advised, if I was you I would totally avoid all grains. Although your diet must be fairly good as your blood results were. Researchers have reported that in some cases the immune system responds to anything resembling the protein structure of gluten - even in those grains considered safe. Of course it doesn't attack the grain we consume - it attacks us, so definitely worth considering. The following article explains the taxonomy of plants - it is worthwhile scrolling down to the end where it is shows us clearly the 'grains' to avoid on the left and ones on the right that are safer to consume.

    wheat.pw.usda.gov/ggpages/t...

    I hope this isn't a daft question - are you also still suffering gut problems? If you are then consider some of the other things that can immitate our original problems - any of the lactose/fructose/galactose problems. Your gastroenterologist may have tested you, if not ask for non-intrusive breath tests and pancreatic elastase tests

    According to Coeliac UK anyone not responding to a GF diet after a year is defined as refractory. Although they state that the following should be excluded before the RCD diagnosis:

    •co-existent inflammatory bowel disease - eg UC, Crohns, etc

    •microscopic colitis

    •pancreatic insufficiency

    •small bowel bacterial overgrowth (SIBO)

    •lactose intolerance

    •functional bowel disorders.

    coeliac.org.uk/healthcare-p...

    I hope some of this is useful. I discovered it in my own journey when I wasn't improving on the GF diet alone.

  • Great tips Jacks!

    Dillas - it took me 18 mths to show healing on my villi so the line that everyone should be fine after going gluten free for a year isn't always so - we're all affected by gluten in different ways and get diagnosed with different levels of damage.

    Here's an old thread we had on the topic so you can link with others on this topic here too.

    glutenfreeguerrillas.health...

    I think you really need to have a proper chat with your Gastro and clarify the letter and whether other tests can be done to confirm RCD - or at least what makes him/her so certain you have it.

    Many hospitals also offer the 'camera pill' which you swallow and provides a sci-fi type view of your whole intestines. This maybe worth asking for to help exclude other causes and assess where the damage is - versus an endoscopy which only looks at a specific area of the bowel.

    As Jacks points out there are some great centres of excellence in Coeliac Disease in the UK and Cambridge appears to be one of the best so despite the travel hassle it's well worth exploring getting help there if you can. Why not give them a call and ask how you get referred yourself?

    Their PDF info is very thorough and suggests they are on the ball!

    cuh.org.uk/resources/pdf/pa...

    I also thought you may be interested to know that there has been research and debate in the USA (who are further ahead of the UK on all things coeliac - at least it seems so!) on cross reactive foods and triggers for gluten type damage e.g.

    - caffeine

    - dairy (lactose + casein)

    - sesame

    - alcohol

    - corn

    - NSAIDs (eg ibruprofen, naproxen - which can cause leaky gut)

    + many 'gluten free grains' eg buckwheat as our immune systems aren't used to eating and processing them they can attack them instead

    ..the suggestion is that these can all confuse the coeliac body and 'trick' some immune systems into thinking they are gluten and so the cycle of villi damage continues. It's a bit like watching a Rambo film. After a long time in the jungle shooting people he can't stop himself shooting anything that moves. That's how the immune system can sometimes get. So removing some of these 'suspected' triggers and cross reactive products can help. It's worth a go if you have the willpower and support from friends, family and a good dietitian.

    Good luck & keep us posted on your journey. Refractory coeliac disease is rarely discussed and it may help others.

    LINKS:

    Here's some handy links to consider:

    BSG - guide on refractory coeliac disease

    World Gastro - worldgastroenterology.org/a...

    Guidelines on camera pill endoscopy (& use in refractory disease) cpgn.net/web/uploadfile/201...

    thedr.com/images/gs201crfoo...

    Dr Tom O'Bryan - Why Don't I feel better on a Gluten Free Diet?

    "Next we see how some foods (such as casein from dairy) can bind to a gliadin antibody. It fits

    into two of the three ‘docking stations’ and that is enough to trigger an immune response as if

    you are eating gluten. This will still trigger an immune response. That food is called a ‘crossreactive’ food."

    "We might want to consider checking when a gluten-free diet is not producing the results that you had hoped for ‘is the problem another food’?. If you are working so hard to be in control of the

    quality and the selection of the foods you eat, this concept of cross-reactivity may be a missinglink in getting you closer to feeling great"

    Here's an alternative view i.e. make sure your diet is really really gluten free first:

    celiacdisease.about.com/b/2...

    adventuresofaglutenfreemom....

  • diagnosed ten odd years ago.also lactose. possible yeast.

    I have been getting a fuzzy head for many years.two years ago diagnosed with a benign

    brain tumour. for which I am waiting for lazer treatment.

    getting over a helio bactor infectection.

    all of which have had for many years. and have more recently been discovered.

    I feel that coeliac desease. can mask other problems.

    or it is assummed that we have " strong imaginations".

    I try to have alternative treatments.

    always interested to hear of others natural forms of healing.

    August

  • A huge Thank you to everyone for your comments. I have since been in contact with the consultant to define the part of the letter which says "no significant gluten ". She said it's just the way the letter was worded. There is no gluten showing in my system. My diet consists of fresh veg, fruit,chicken,fish and occasionally steak. I stopped eating cakes ,biscuits and sweets and eat no processed foods. I have no intolerance to any dairy products.I am tee-total having gone off alcohol 12 years ago when all this kicked off. My main weakness is tea so I will try cutting down. My symptoms are weird and I have no real tummy problems more like a horrible Flu feeling all the time and dreadful fatigue. I have phoned Dr Jeremy Woodward's secretary (Cambridge) and referrals have to come from your gp or consultant which I will arrange. She is sending me some info. I have 6 weeks before next consultant visit so will arm myself with all the questions I can from your very helpful advice. Thank you again.

  • hi I have just been reading this thread and wondering how you have been getting on? I have also been refrerred to Jeremy Woodward and see him for the first time this Friday. My fear is that he will want me to start on immuno suppresants. I would rather try the Paleo diet first and see if that helps. I have no symptoms and no traces of gluten in my diet but my Lymphchite levels are very elevated. Pill cam shows no sign of ulcerations which is good news.

    Thanks for posting - there is not much out there on RCD

  • Hi

    Good luck on Friday with Jeremy Woodward. I am genuinely pleased you have got an appointment. I am still trying after 3 years but NHS will not refer me due to cost. At least the consultants I have seen (both fantastic) did communicate with him and took advice on the medication. Unfortunately it is steroids and mercaptopurine (part of a group of chemotherapy pills).

    Like you I have no ulcerations and my villi are near normal. That result came in my last endoscopy which was 2 months ago. I was then on a maintenance dose of 8mg steroids and 25mg mercaptopurine daily. I wasn't feeling at all well (like a bad dose of flu and chronic fatigue). It turned out to be the same as you with elevated inflammatory cells . The consultant

    put me back up to 40mg steroids now reducing at 5mg a month. We are still experimenting to find a maintenance dose that works. However I feel much better again although some tiredness is still there.

    I have looked at the paelo diet and anything is worth a go. It does make a lot of sense so I am going to start on that to see how I get on. Thank you for that.

    Finally you are so right. There is not a lot out there on refractory coeliac disease but I think Jeremy Woodward is your top man who has a great interest in it.

    Good luck again for Friday and please let me know how it goes as I would really like to know.

  • hi and nice to hear from you! I cant believe it has been so hard for you to see him. Where are you living? Glad you seem happy with your consultants tho. I am hoping against hope that on Friday he will agree to allow me try several months of Paleo first . I really really don't want to go on all the medicines. I am so scared I will feel worse. I have a busy job and young kids and am afraid they will make me feel sick. That is irony as I am so unsymptomatic - apart from being tired a lot of the time (but that could just be life!) I feel ok - are you the same? Will you be on the medication for ever? Take care

  • Perhaps have a look at 'The Paleo Approach' by Sarah Ballyntyne. It's really comprehensive.

    Good luck.

  • hi

    My apt was good in that he took his time to go through my case. For the moment he has decided not to put me on immune suppressants as I am so unsymptomatic but I need to keep a food diary and as the clonality of some of my cells from my last endoscopy are out of range he has asked St Thomas to send them my most recent biopsies so he can look at them again, then he will re biopsy me in Jan 15. I am re assured as he told me that he is aggressive in his treatment of RCD. I am still however confused - do I have RCD 1 or not and if I do and it is not treated or my lymphocites stay high does it turn into Type 2. He admitted there is still so much they don't know about this area. So the investigations still continue...

  • Hi

    I am glad your appointment went well. I am all for staying off medication unless it is absolutely necessary although I have benefit from it as I feel so ill all the time. I am not sure if type 2 follows type 1 but I did google it a while ago and actually stopped reading it as I am a bit of a coward . I think it was an American website. How did they diagnose your condition when you don't have a lot of symptoms? I am really glad you don't have but would be interested to know. In reply to your question I stay in Scotland so it is a different health service all together. Are you getting your bloods done regularly to check you are not deficient in anything? It really is a total minefield sometimes.

  • I used to get the flu- feeling from eating eggs or beef. I have Intolerance to many foods, also ingredients in medicine(carriers, preservatives) and of course gluten, that was diagnosed 18 yrs ago, the others 25+ years ago.

    Why not try a food diary with the reactions on other page, you might see a connection. Bear in mind my 'flu' symptoms appeared up to 4 days after ingestion

    Good Luck, especially with Cambridge, good to meet with experts, its a tricky subject

    sue

  • Hi Dillias

    I've just come across your post and wondered how you are getting on. I am also diagnosed Refractory so I really feel for you....there are not many of us out there and finding people who understand....and don't just assume you are still eating gluten... is not so easy! Although I have ongoing atrophy after 3 years and still high positive antibodies bizarrely (GFD couldn't be stricter if I tried) I'm lucky as I'm managing to keep my symptoms under control with a very restrictive FODMAPS meets Paleo type diet, it works for me so far and I'm very grateful for that as my Consultant is happy to let me for now.

    Hope you are doing ok and the treatment at Addenbrokes is effective and not too difficult

    Best wishes

    Nicky

  • I was really ill in 1998, in SA, and although not labelled refractory coeliac disease,maybe it was, I am coeliac, but I really was not absorbing at all, my GP , a dietitian and I, just worked together to try and sort it, I ended up using Osmolite HN as a food supplement , having almost daily Neurobian injections ( vit b1 100mg ,vit b6 100mg and b12 not available UK but in SA India and Germany .made by Merck ) also Creon usually used for digestion, ,Metamucil,, I would have to dig out my old medical notes to see if there was something else,and a strict gluten free diet and no grains at all. but after about a year I did get better and better and gradually stopped the supplements, Now I just stick to a gluten free diet,I also returned to full time nursing which is quite a demanding kind of job.

    The dietitian was key to my problem and the fact that my GP was humble enough to accept help from whatever avenue, as well as being a specialist GP in his own right and a with an excellent knowledge of Physiology and listened to what I said as well.

    My GP READ THE LITERATURE , Cooke and Holmes. UK, J Trier ,USA. Marsh UK, Peter Howell. UK ,and others, there are many more up to date ones now as well.GUT and New England Journal of Medicine often have good articles on all aspects of Coeliac disease

    Having some medical knowledge myself helped and I spent hours in the Medical School library reading for myself, difficult at first, but easier as one struggles with the terminology.

    Marsh is probably best on refractory disease with his classification of the stages of intestinal damage

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