Coping with Pain

Hi. I am new here. Haven't written before apart from a reply to someone. I was diagnosed with coeliac disease 4 months ago. I was very ill and off work for 2 months. I had severe pain in my back between shoulder blades. I have had very little pain in the front stomach area but I believe the pain is coming from my stomach but I just feel it in my back. I ended up having my gall bladder removed also. I also have continuing gastritis.

I have followed a gluten free diet for the past 4 months but I still have varying pain in my back. I have gained weight but my diet has to be bland as fruit and veg aggravate my stomach and the pain gets worse. Would be interested to know if anyone else has chronic pain because I am finding it very hard to deal with. I would be grateful for any tips as doctors and consultants just advise pain killers and I am being sent to a pain management clinic. I am also thinking of having tests to see if I have auto-immunity in my stomach. The whole thing is becoming very depressing now. I take acid reducing tabs and painkillers and also tabs for ibs as one doctor said the symptoms could be that. Hope someone out there can help with some advice!!!!

17 Replies

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  • Hi

    I can't help with the pain aspect per say but if it is connected to your stomach you may well have issues with other foods, as many coeliacs & ncgs people do.

    Have a look at a website run by Micki Rose purehealth.co.uk and a connected website trulyglutenfree as there is lots of different advise on there, a lot of it free & you can have access for different trsts if needed, the linked facebook page has members on there whose depth of knowledge astounds me. There is also a website run by Sarah Balyntyne, paleomom & she has an incredible book about inflammatory foods & how to approach cutting out certain foods for a while & then reintroducing them. By following this approach it may help identify the culprit foods. Worth a try. For me, both websites helped me tremendously & allowed me to regain my health, I am not all the way there yet but almost. Good luck.

  • Hi virgolizzy

    Thanks for the advice. I will have a look at all the things suggested. This gives me some hope because over the last few months I have lost faith in doctors. I'm glad that I found this site. Hopefully I will eventually regain my health too.xxx

  • You will, it will take time, listen to your body & soak up as much advise from other people experiences & work out what suits your body as we are all different x

  • Hi Shirleywhirl

    Sorry to hear about the pain, I hope the pain clinic will be able help you. I suffered with lower back pain for many years until I started to do Pilates exercises on a regular basis; strengthening my core muscles and improving my posture has meant a big reduction in pain. I don't know if there are any forms of exercise that could help you, but it may be something to find out about.

    If you do have IBS along with coeliac disease, it may be worth taking some good quality probiotics to help your insides get back to working properly. Try googling "healthy gut bacteria" or "gut biome" for more information. I also find I have to avoid many ready-made gluten free foods because of the additives which upset my stomach.

    Like Virgolizzy I have found information from Sarah Ballantyne to be very useful. My health has improved since excluding certain foods and then re- introducing them after my insides had had a chance to heal.

    Good luck with sorting this out.

  • Hi Penel

    Thanks for your reply. I am thinking that I may well be allergic to additives in gluten free food. I will be following up all suggestions. It took so long to diagnose coeliac disease that my digestive system has really taken a hammering, Hopefully long term I will improve. xxx

  • Hi shirleywhirl patricia here the beat advice I can giv you about coping with coeliac disease is to stick to gluten free brands dont trust labels only buy gluten free that says it on the labelling or better still to stay even healthy go for free from gluten free from wheat like me make sure you have yur own toaster dont let any crumbs go near yur food off the table or microwave its vital even a ninute of crumb can be destamental to yur health because with celiac disease it attacks it own tissue & you dont get the nutrients to keep well as for pain you get it everwhere in yur back stomach spasms all the time & living on the toilet with dyria so just take each dayas it cums & it will get better & you will cope better hun patricia

  • Hi Patchy2468. Thanks for your reply. It helps to feel less alone and that someone understands what you are going through. I will take your advice. I did think the pain would go when I started eating gluten free but I may be taking in gluten and not know it. This is not an easy thing to cope with. Take care.xxx

  • Yur wecum hun as you sed this coeliac disease is not a easy disease to manage I call it my evil pathogen disease with 7 legs cos that what it looks like if you write it in on google take care babe & be safe

  • I was diagnosed with Celiac Disease 5 months ago. I hurt all over for 7 years and was put on Cymbalta and Celebrex because my pain and brain fog was so bad. I was diagnosed 7 years ago with CFS and FMS. My gastronologist only found IBS and diverticulitis for the past few years as colon cancer runs in our family so that is closely watched. All females are diagnosed with IBS and my daughters have been since birth. I had my gallbaldder removed due to pain and vomiting about 8 years ago. iOnline I found the book, "Medical Medium and it changed my life. I went gluten-free and chose a healthier lifestyle and saw positive changes in my pain. No fun but so worth it. I decided to stop the Cymbalta as also and the withdrawals from both were straight from hell. Around the same time, I found the book, "The Road Back". It suggests natural herbs to assist your withdrawals. I am finally on the other side of the poison that were in my body. Had I not flooded my body with nutrient spinach, kale, celery, cucumber and the Neuro Genetic Solution supplements, I am sure I would still be struggling. My Celiac was found my a neurologist as my migraines were no longer manageable as Imitrex my main coping skill. MY BACK, SHOULDERS AND NECK!! Yes the pain is still there but so much better. My chiropracter found bulging disk and so many people have them and no problems. I have had mine for many years. My thought is the muscle wasting that is common in Celiacs due to malabsorption cause mine to start caving due to poor muscle control. I was caving in like an embryo with my body losing my core posture. I just completed four weeks of therapy and I am know doing home therapy daily. I highly suggest you find some physical therapy and massage therapy is next for me. I have tried dry needling, accupunture, physical therapy and they all help tremendously. My chiro prescribed the physical therapy for me although a orthopedic doctor will do the same. I can have surgery but I am trying to save it for when I get older as I am only 49. I am now doing planks and have lost 10 pounds and the puffy, bloat look is gone. I stopped coffee as the GERD was horrifc and I've never had upper GI problems. I switched to green tea and found I liked the Oolong tea the best as I like strong coffee. Oolong helped start the lifestyle change and helped with the cravings. Stevia and sugar half and half with my sweet tea as I am a southern girl and that was so hard to break that life long habit! I am now off all tea except oolong and green english breakfast tea by Tattle Tea bought on Amazon. The emotional response from the lifestyle change is challenging. EFT is helpful although I haven't used as often as I need to. During my lifestyle change, my sister's bowel resection of 5 years hit rock bottom and her organs were shutting down. Her digestive journey started with a nerve stopping function in lower bowel with chronic constipation. I will always wonder if gluten had a hand in her problems. She will on PTN endlessly unless something changes as her pancreas is inflamed and she can not keep anything down and what she can keep down turns into diarrhea as the bulking part of her intestines had to be removed. Keep a watch on your B12 as that is nerve related and pain is monitored by our nerves.

  • Hi Mistydawn, Sounds like you have had a really tough time of it with your health. Thanks for taking the time to reply. It really helps to get advice from people who have been through similar things. I will try the things you suggest. Also all the best to your sister. Take care.xxx

  • Thank you. Blessings.

  • Hi Shirleywhirl

    I agree with what others have said but also want to say that the diet does get easier - join some of the facebook groups for gluten free and coeliac as they are helpful with places to eat out and recipes etc. The range of foods is expanding rapidly at the moment so you can buy most things gluten free and lots of good recipes if you can cook and if not then try to learn as it makes life so much nicer when we're have to be gluten free!

    Also could the painkillers cause pain - I get terrible stomach pain if I take codeine so thought I would mention this. Sometimes pain can be neuropathic and although the cause of the pain has now gone the pain signals are still being triggered - the pain clinic should be able to help with this but there are medicines which can 're-set' this and calm these pain signals so you stop being in pain. Also, its not a good idea to take acid reducing medicines long term - they can make it worse so try some natural alternatives like ginger maybe.

    Milk can often be a problem for coeliacs in the short term so if you can try cutting milk/dairy out for about 6 months. Also lots of coeliacs cant tolerate oats even the gluten free type so it might be a good idea to cut these out for a few months too - then gradually re-introduce them.

    As you say that fruit and veg causes stomach problems then are you seeing a dietician for advice about this - I would say have a look at the FODMAP diet to identify the particular fruit or veg that cause the problems as its unlikely to be all and you arent left with much choice of food if you're not eating fruit or veg.

    One last thought - if you're eating a lot of the free from gluten processed foods then in theory you could still be getting a fair amount of gluten from these as most of them do have very small amounts but if you're very sensitive (even if this is temporary until your symptoms have settled down) then you could be reacting to these.

    Anyway that's a few of my thoughts - hope you feel better soon.

    Gill x

  • Hi Thurgolady

    You have some good advice there, You are right about the pain being neuropathic as I was in real pain for so long with my gallbladder and pancreatitis. The pain clinic said that is the likely reason. I am not taking painkillers now unless I absolutely have to and then only paracetamol. I have had the same experience as you with codeine - really bad stomach cramps. I do get acid reflux at night and am trying to cut the acid reducing tablets as well but it is hard when I wake up with acid burning my throat.

    I am waiting for blood tests of how I am doing with the gluten free diet and consultant is testing for auto-immunity of the stomach. I'm trying to introduce bland veg like courgettes and have had some spinach without too much reaction. I am definitely going to have a look at the FODMAP diet as well.

    Thanks for taking the time to reply.

    Best Wishes xxx

  • You're welcome Shirleywhirl - it may be that you are close to an answer but its so hard isnt it when you've been unwell for a long time. Take care, x

  • I too had issues even after two years of GF and after being referred again I was also diagnosed with IBS which was a blow as it meant even more food restrictions on top of being a lifelong veggie. Ask for more tests :)

  • Thanks Tiggykanga

    One doctor did suggest I had IBS as well as coeliac disease but how do you seperate out the symptoms as a lot of them are the same? I have been back to my consultant and he is doing blood tests for gluten levels and auto-immunity of the stomach too. Also going to pain clinic. Hopefully things will gradually improve. How do you cope with your IBS?

    Best Wishes xxx

  • Ask your doctor to prescribe you some pain relief pills. I personally used to put myself on Voveran (I oredered it on 4rxpharmacy.us/ ) , cause bad back pain kept me awake all nights long.

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