Non Responsive Coeliac?

Hello - im classed as non-responsive - apparently my immune system will not switch off and keeps attacking my villi - despite me being on a strict gluten free diet for over 16 years. I have tried Prednisolone which did not work and then Azathioprene which also hasnt worked. Im now wondering whether Low Dose Naltrexone might be worth a trial? Has anyone else tried this? Any advice would be appreciated.


17 Replies

  • Hi

    Read an medical article only a few days ago about non responsive coeliac, it was a study using faecal transplants & it was very successful. I know it sounds a bit yuck but if you are at your wits end, it may be worth looking into. I know some places in the UK do it privately, I think some hospitals use it for treating hospital acquired infections. If I can find the article I will post the link.

  • Sorry I'm struggling to even get a diagnosis I've had coeliac my whole life and the Nhs is useless. Did you know you probably have lactose intolerance also most people with coeliac disease do.

  • Hi herman sorry yur still waiting to find out if you have this horrible evil pathogen disease coeliac disease I suffered all my life with thinking I had ibs lost so much weight with it untill I had to have a urgent blood transfusion becouse I was eaten gluten & got so much damange with not getting the nutrients even now I stick to a strict gluten free diet the best I can so if I was you babe I would push for the test & make them listen to you becos there is so many complications you have to enjore with this disease take care & be safe

  • Interesting - i will mention it to my Gastroenterologist. Better than taking immunosuppressive drugs that are so strong and come with their own risks.

  • Hello Folks

    The reason faecal transplants work in so many different conditions (including some cases of non-responsive CD) is that you are changing the micro biome, which is the culprit not addressed and often made worse on a GFD. We talk about the impact of GFD and micro biome in my upcoming series 'Betrayal: The Autoimmune Disease Solution They are Not Telling You'.

  • Hi babe I have that problem inspite on being on a strict gluten free & wheat free diet I am getting more villi damage I am so vigilant with my food making sure I dont get cross contamination I to am at my wits end tryen to keep healthy but they say if your gut is not healing& you are still getting damage I can try suppressants drugs that surpress the ammune system but I read your ammune system would be that weak that you can get every infection & disease & not be able to fight them off easily so I would get to see a dietian first or your doctor & see wat he can do for you hun take care & be safe patricia

  • I have never tried it so I am not sure. Have you tried Lactose free ? I was still having problems ,so now I am both Gluten and Lactose free. so far so good. sorry could not be very helpful , but I hope things get better for you . I'll try to see what info I can find about this. keep your chin up ;)

  • after being on a gluten free diet for several years but wit no definitive diagnosis I just gave up and ate anything, great for little while then I eventually received a coeliac diagnosis but damage was done and I wasn't absorbing much at all, finally between Dr and Dietitian I ended up having Osmolite HN daily, Daily Neurobion inj (vit B1, 6 and 12) Creon tablets,Metamucil as well as gluten free diet Was in SA and on a good Medical Aid, but even then the Dr had to motivate pretty strongly for this. followed this regime for about a year, reduced but kept on the vit b injections for about 4 more years, don't need them now.

    Still find too many carbohydrates a problem they drain my energy levels , low lactose ok in moderation, but otherwise well. I also had access to Academic libraries and read avidly and so did my GP so knew more medically than what we get in support books.

    One may be able to do this in private care, but I doubt whether one could get it on NHS. but there are some supplemental drinks available which were prescribed for me here during another illness.Apart from the creon the treatment was mainly supplemental, but expensive.

    This probably doesn't help much, we are all so different, just thought I would share in case you pick up anything that may help you. I was so fortunate in having a GP and Dietitian who worked with me as a team.

  • Hopefully your gastro will be helpful but in the mean time perhaps do some research on gut bacteria /the gut biome? A healthy population of a wide variety of gut bacteria is vital and may be difficult to achieve after having had a gluten-damaged gut. Faecal transplants may not be readily available, so you could try other ways of improving your gut bacteria.

    Have a look at probiotic and prebiotic foods and supplements. Try eating some fermented foods, if you can. It's probably also a good idea to avoid all ready made gluten-free foods which contain additives like emulsifiers as these also appear to be able to damage the gut lining.

    You could also read 'The Paleo Solution' by Sarah Ballantyne, which describes ways of dealing with difficult autoimmune conditions, through what you eat.

  • the same with me. No diagnosis, and now my insides are so damaged. I have to avoid gluten, lactose and soya, meat, onions and any food that causes gas.

  • Hi appletina that sounds like the FODMAP diet - ive been looking into that and i think it will help me if i avoid foods that ferment. Ive found lactose free milk too.

  • I have read that Low Dose Naltrexone is very helpful for auto immune disorders and has few or no side effects if you build the dose slowly, as well as being relatively cheap, so I would definitely try it - if you can get it. I asked my GP about it and got a shocked and horrified response as if I was asking for something completely outrageous. I think you might be able to get it privately as you have a firm diagnosis. I've seen that someone on the APS/Sticky Blood forum (another autoimmune disease) takes it to good effect, but I am not sure how they managed to get it or from where.

  • Thanks Frodo - i mentioned it to my GP and they advised me to talk to my Gastroenterologist so im going down that avenue at the moment. Thanks for taking time to reply.

  • Good luck. Would be interested to hear if you are able to get this, assume you're with NHS.

  • Have you thought about giving up all grains as they can trigger the same responses ...reading no grain no pain by doc Osborne he explains why how ect

  • Thanks Blondie2505 - i have tried giving up all grains it was extremely difficult to do and i did not feel good on that regime. I have also read that when you are Hypothroid you do need some carbs in your diet to feel well and grains are a good source of carbs so when you cut them out its hard to find enough alternative sources. If i didnt have to work i could probably do it but when woking and travelling its hard to find grain free food. Have you tried it and had some success?

  • PS - im hypothroid as well as coeliac.

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