Coeliac Disease and bowel disease - is there anything left to eat?!!! :-(

I was diagnosed approximately a year ago with Coeliac Disease following symptoms during the previous 2 years and a stillbirth at almost 38 weeks. Following diagnosis my symptoms didn't improve whilst on a gluten free diet and a colonoscopy showed that I also have lymphocytic colitis (microscopic bowel disease.) I tried steroids which didn't help & have now been advised to stick to a gluten free, low fat & low fiber diet. I've seen 3 dieticians so far who have all said different things & said they would sent me some info in post which none of them have.

The list of things I shouldn't eat is endless & the hardest thing is that I now can't eat a lot of the healthy foods that I used to enjoy. I'm not allowed to eat raw fruit or veg, anything with skin, seeds, corn, berries, nuts, etc. I don't really enjoy eating anymore and find that for convenience I will often just eat the same thing for several days in a row.

I'm looking for 2 things; to find out if there is anyone else in a similar situation as me who can offer me some advise and for suggestions to help me form a 7 day healthy balanced diet that is gluten free, low fat & low fiber.

I don't feel that I can ever start to think about trying to conceive again until I am confident that my body is getting all the nutrition it needs.

I will add that I am feeling well now which for a long time wasn't the case.

Any comments would be valued xx

10 Replies

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  • hi sorry to hear your problems i was diagnosed 2yrs now i make my own things a lot can you eat meat and potatoes make a dinner or you can do a curry from scratch i make all my own foods and has doc given you ioron tabs i am on vit b12 ingetions too good luck and do hope you get well soon x

  • I am so sorry to hear of your difficulties. I am a nutritionist and in these cases I would look more to using the Specific Carbohydrate Diet / GAPS diet or Paleo Diet. You may also wish to undertake a full nutritional profile to check your nutritional levels and absorption. In many cases of CD / Colitis there are issues with pancreatic enzyme levels - so digestion of foods can be difficult, lactose issues and bile flow etc - this can all affect eating and how well you can digest foods. However it is possible to take supplements to help matters.

    Absorption of nutrients is a consideration and malnutrition is a common complication of both colitis and crohn’s disease. Nutrient losses through the inflamed gut, bacterial overgrowth resulting from strictures or fistulas . Inflammation also increases oxidative stress in the bowel mucosa and decreases levels of antioxidants. Zinc and copper is often lower in patients with IBD.

    Anaemia is common in patients with IBD so it is worth getting these checked and yes folate and B12 can be low. Fat soluble nutrients D, A and K can be low too and yet important for gut healing, lowering inflammation and bone health of course. Your GP can certainly run a vitamin D test for you.

    There are free recipes information on my website if that helps advancenutrition.co.uk but I would go back to your GP and request some basic tests as well. I am sorry you have not had sufficient support to help you make the dietary changes. SCD / Paleo eating is actually quite basic and simple with a large emphasis of good quality protein and plenty of vegetables. Steam them to make them easier to tolerate. Meat broths, chicken stock are great for gut healing and I would include them daily - there is a free recipe for chicken stock on my website. I wish you best of luck

  • Hi there I was interested to read your reply, I have been on methotrexate for 7 years(tablet and injections) 12 months ago I started to put on large amounts of weight(nearly 7 kgs in 1 week) and looked 9months preg with twins, terrible for a 61 year old who has always been slim, doctors thought I had liver cancer with ascities, then perhaps panc cancer, then ovaries etc testing for cancer for 4 months, then showing indicaters for myeloma, no nodules on bones or anything. Anyway the problem is I can not eat meat, veges, fruit, sugar only like fish, potatoes, pumpkin and yoghurt.

    I look very unwell and take 4 domaperdon tablets a day to move food thru my small intestines, and I have treated myself for candida which as helped in my eating without bloating so much. any suggestions please cheers Trish

  • I would add to previous reply....glutimin powder an amino acid really helps with healing the gut also blood type specific diet will be more suitable...Dr PeterDadamo's book

  • The one thing I notice on these sites is the GF diet etc etc, It is forgotten that the GF diet does contain gluten, even if a small amount. Do people exclude ALL gluten if the gf diet upsets them?

    I told a Tribunal Panel yesterday, a doctor, Judge and a man from the DWP that I refer to my diet as a coeliac is the coeliac diet not the GF diet because I need to exclude all forms of gluten. When first diagnosed in 1955 you were a Coeliac end of not a GF, Low GF or supersensitive.

  • I am gluten sensitive not coeliac and doctors often point out to me that you shouldn't exclude foods without good reason, a sentiment that I wholeheartedly agree with. And I think these dieticians need to justify their recommendations to you. You need to know why you should cut out these foods.

    You already know about gluten, and there's no question that you have to cut it out completely. It is in so many things from food additives like maltodextrin to lipstick. I was a bit surprised when a gastro pointed out that it could be in lipstick (not that I wear it as I never got on with makeup). I think you need to be absolutely sure that gluten isn't slipping into your diet in unintended ways.

    The diagnosis of lymphocytic colitis means that there were more white blood cells than there should be in your bowel lining (I think that's right). The white blood cells are reacting to something in your digestive system that they think shouldn't be there. That could be a foreign invader like a parasite or bacterium. Another possibility is a food intolerance, which in my book means that your body has started to produce antibodies against certain types of food - maybe because the damaged gut lining starts recognising food proteins as invaders.

    The FODMAP diet is designed for IBS, and I think it works because it cuts out fermentable fibre and sugars that have become food for the wrong sort of gut bacteria. If a bacterial overgrowth is the cause of your problem then that might help. If it's one of the other possibilities, then maybe it won't, but it's a tool that you can use all the same.

    I cannot think of a reason to recommend low fat, other than it's really in vogue to demonise saturated fat at the moment. Does fat contribute to diarrhoea? I wasn't aware that it did and in any case I can't see how it deals with possible causes of excess lymphocytes. We need our fat soluble vitamins, and our gall bladders need sufficient stimulation from fat to work properly otherwise the bile sits in there and is more likely to turn into gall stones. I can see a number of risks in adopting a very low fat diet. If it's to protect your heart, I find the evidence that high fat diets cause heart disease deeply unconvincing. Its possible that consuming heavily processed vegetable oils does contribute to heart disease, but people have been eating naturally occurring fats like butter and olive oil for centuries. A diet that includes some high quality naturally occurring fats will taste a lot better too.

    So I haven't really answered your questions on what to eat. But I know that if it was me I would make sure my diet was as gluten free as possible, ask my doctors to look into the possibility of parasitic or other kind of digestive infection, as well as considering what the best kind of dietary approach would be.

    I hope you find this helpful.

  • I also can't eat much even the gluten free bread or any thing with starch inclueding potatoes , as soon as I try I get hcups and can't digest it , what I do is pick my fruit and leave the peal on and microwave it for about two minutes, I also do this for beetroot once a week and it seems to clean and keep my system working well also golden linseed helps but don't be alarmed if your urine is red or pink it most proberly cleans out you bladder as well

  • sorry I should have said prick my fruit and beetroot all over before putting in to the microwave oven

  • Hi Cinders

    Firstly, can I say how sorry I was to read your sad news on the stillbirth of your child. I know how awful this is as it happened to my niece at delivery of her second child.

    In respect of your bowel problems, I am not sure this will help you other than to say you are not alone. I have never had a positive reading for CD as It has always been inconclusive due to not eating gluten before the blood tests. The fear of not being able to leave the house after eating gluten being the reason. In October/November last year I was diagnosed with Lactose intolerance, which has made life doubly difficult. My bowel problems they have said are due to Diverticular Disease, but that I need to follow a low fibre diet. This has proved to be a challenge, insomuch as I am fine if I eat at home and produce all my food from scratch, leaving out onion, garlic, gluten and lactose. Only eating certain fruits for breakfast on an empty stomach and only managing to eat a limited amount of vegetables. I find that eating gf from a supermarket does not work for me with the exception of the pitta bread from Tesco. Everything else either gives me diarrhoea or terrible wind. I would be interested to know how you get on with your food challenges in the future and if any of the above is of help to you. Best regards, Allergies

  • Hi there I am so sorry to read of your sad events, its interesting you have food issues, I am unable to eat meat, veges, fruit or anything with sugar in, also have been gluten intolerant for past year but still have eating issues and look 9 months pregnant.(I am 61) not a good look. I now eat fish,eggs and yoghurt with washed tinned fruit.

    It was suggested that I treat myself for candida as methotrexate can cause it, I have found that to be quite advantageous and seem to eat more without too much bloating and my bowel has settled down. all the best for the future.

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