COELIAC DISEASE WITH IBS

IBS and Coeliac Disease

Is anyone out there suffering from IBS with Coeliac disease? I was diagnosed with coeliac disease over a year ago after being extremely ill with severe acid reflux, panceatitis, gastritis and gall bladder disease (had my gall bladder removed). After being on a gluten free diet I put on weight after having lost a lot. However, lots of symptoms remain which the gastroenterologist says are not coeliac symptoms so must be IBS. I have pain in my upper back which can be worsened if I eat anything that doesn't agree with me i.e. onions, spices. I also still get acid reflux and a constant sour taste in the mouth. Now following the FODMAP diet but the pain does get me down as I have to work. I take amitriptyline at night for the pain. I have had meds for acid reflux but they really don't work for me. If anyone has coeliac disease and IBS symptoms I would be very interested to know that I am not alone!!

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  • Shirleywhirl I am struggling with the fact that doctors have told me I have IBS when I don't think I have any symptoms of this. I did the FODMAPS diet and the only time I have symptoms of gut problems is when I accidentally eat gluten or products that contain glucose syrup. However, and here's the thing, I do have problems with some foods that give me heartburn or stomach cramps (actually in my stomach not further down). This was also the case when I ate foods that contained certain additives. But I have not been diagnosed as coeliac by the doctors - nor even gluten intolerant - I realise now they are now suggesting I have IBS and are over-interpreting or mis-interpreting what I say. Also I am refusing to do the gluten challenge. The advice is to take probiotics. What symptoms does your consultant say are due to IBS? Is it the acid reflux etc? Because I am confused now as to what IBS actually is? Out of interest do you eat stuff from supermarkets that is labelled GF?

  • Hi urbangirl

    Thanks for your reply. my consultant thinks that the pain I am getting through to my back is IBS as this symptom does not fit with the coeliac diagnosis where symptoms are relieved by a gluten free diet. As I have been gluten free for over a year and the pain still comes and goes, sometimes bad sometimes mild, the conclusion is that the pain is coming from IBS. Acid reflux can occur with IBS and coeliac disease. I do eat supermarket food marked gluten free do you advise to cut this out? i do cook a lot of meals from scratch but at times it is hard because I work shifts. I have stopped having gluten free bread though. Do you think you may have non-coeliac gluten sensitivity? Have you taken probiotics and if so which ones? It's very frustrating when you react to foods and don't know why. I hope you get to the bottom of your problems.xxx

  • Hi Shirleywhirl

    I suffer from coeliacs and many symptoms are similar to IBS. I don't find amitriptyline particularly helpful for pain relief (I have it for my fibromyalgia and peripheral neuropathy) but I sleep better with it than without it so I guess it's doing some good! Like you, I have suffered with acid reflux and pancreatitis as well.

    I get a vile bitter taste in my mouth in the mornings too... I take omeprazole for the reflux and sleep with the head of my bed raised, but still get burning pain and that awful taste. I have been gluten free since diagnosis some 10 years ago but still suffered from all the same symptoms you describe. Hardly surprising our guts are 'irritable' when you think what they're coping with! I too was told I must have IBS but Buscopan failed to make any real difference (it does stop gut spasms though).

    I thought I would never feel well again, but 4 months ago I was diagnosed as diabetic (type 2) and it has solved many of my problems! I was put on Metformin (vile side effects) and eventually told zip must go on insulin injections. Having done my own research I discovered that people were having remarkable results from a low carb diet so decided to try that first. Result! My blood sugar is now controlled, I am 6 stone lighter and best of all most of my awful symptoms have either gone or eased....

    It might be worth you trying a low carb (no more than 30g each meal) and higher fat (healthy fats so unsaturated or monosaturated) diet. And remember to keep spicy or acidic food just for very occasional treats. I honestly feel better than I have for years.

    You have my sympathy as there is nothing worse than feeling as groggy as digestive problems make you feel.... there are lots of us out here with similar symptoms and little support who feel for you. Listen to your body, it knows what it needs - and go with your insticts, only you know what works for you. Good luck x

  • Hi Boomerangkal

    Thanks for your reply. Nice to know that someone is suffering similar symptoms to me (not that I would wish anyone to suffer). I will try anything to try to control my symptoms. Is there a book or website for the low carb diet? Since I went gluten free I have put on too much weight so trying this will benefit me in that way too. I have tried taking omeprazole but this does not have any effect on me at all. I know my gut has been through a lot, as you say. I had a long road to get a diagnosis so I was eating gluten for a long time and damaging myself.

    Hope you continue to feel better.xxx

  • Hi Shirleywhirl, I have been told I have IBS and have had it for probably 30 years now. I have been given Mebeverine but rarely take them because they make me feel funny. I take lots of tablets for various reasons including Amitryptaline for muscle spasms in my jaw at night, odd I know, which seems to help. I had a gastric bleed a couple of years ago so now take Omeprazole regularly which helps most of the time. I also take a number of medications because I have a chronic heart condition, Warfarin has just been reintroduced to this cocktail which has upset things a little but it should be sorted soon. There is also antidepressants to be accounted for and I take Lithium and Mirtazapine, the Lithium has given me a rare side affect whereby I can't tolerate milk or milk products, it tastes nasty so that's a huge number of foods I can no longer eat. So I don't eat dairy and I avoid Gluten because of the IBS, and I get swelling in my mouth and lips from chilli and some spices, but accidents happen and I still suffer very painful flare-ups and uncomfortable bloating. Life can't be simple can it. I do hope you get some proper answers very soon, hugs x

  • Hi nickibmobile

    Thanks for replying to my post. Good to know that others are out there who understand and support. You sound as if you have had a tough time. Omeprazole has no effect on me and I have taken pantaprazole but stopped taking that too as I still had the same symptoms. I still have mebeverine tablets but they don't seem to help much either although they did when I first started taking them so maybe my body has got used to them. I didn't realise how painful IBS was until I started suffering from it. Being in pain a lot of the time is very wearing as you know. Take care.xxx

  • Hi - maybe a stab in the dark, but it sounds to me like you could possibly have low stomach acid instead of high. This is very common among hypothyroid people and the symptoms are very easily and frequently confused with high, hence anti acid meds are prescribed, making the situation worse. Many counter this by taking a couple of teaspoons of apple cider vinegar (good stuff "with the mother") in water just before each meal. Another possibility is having under-supply of digestive enzymes. It is possible to buy supplementary enzymes for this. Either or both of these could lead to digestive pain as undigested food effectively rots in the stomach and doesn't pass on smoothly.

    Does either of these sound a possibility? Worth a trial of either to see if they help?

    Good luck, it sounds like this is making your life a bit of a misery.

    Gillian

  • Hi

    Thanks for replying. Yes at times I find my symptoms a bit much to cope with. I will certainly try the apple cider vinegar and the digestive enzymes and see if this makes a difference. Have you tried these things yourself?

    Shirley

  • Have a look at Michael Mosley's book / website "The Clever Guts Diet". It explains about the health benefits of improving gut bacteria, fermented foods and the use of apple cider vinegar. I've been using this for a few weeks now and it seems to have improved my digestion. I've found it more effective than digestive enzyme supplements. You need to be careful not to take too much.

    The recipes are also low carb, with ideas for things like cauliflower 'rice', and explain the importance of eating a wide range of colourful foods. I avoid ready-made gf foods as they are so often full of sugar and additives (emulsifiers etc) that upset my stomach.

  • Thanks for that. I will look into it and give it a try.

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