Any clues as to what causes, or tales of similar experiences with, persistent gastrointestinal symptoms? Diagnosed with coeliac disease 2.5 years ago I have been a strict follower of the gluten free diet. After 4 months on the gluten free diet, I hadn't experienced full recovery from my symptoms and was concerned because I didn't know if I was still somehow eating gluten or if it was something else, so the dietitian followed this course of action (after a bowel cancer screening);
1. Put me on a Low FODMAP diet ( deglutenous.com/being-glute... ), with no relief in symptoms - ruling out IBS at that point.
2. Trial a Low FODMAP (just to be sure) and elimination diet ( sswahs.nsw.gov.au/rpa/aller... ) in conjunction, this provided some relief but was not extensive.
3. We hit Christmas and I gave up, it is was bad enough being my first gluten free at Christmas, let alone Low FODMAP and elimination diet!
1.5 years after diagnosis, my follow-up endoscopy came back all clear, in fact the doctor was very impressed with my recovery, despite the severe villious atrophy upon diagnosis.
About 12 months later, I was still experiencing stomach pain, bloating and irritable bowel. So the course of action was;
1. I started the strict elimination diet on my own, determined to find the cause of my problems.
2. Consulted the dietitian when I didn't have enough reduction in symptoms to start challenging foods.
3. I was placed on a dual Low FODMAP/elimination diet and symptoms worsened.
4. I was instructed removed anything too high in fat (full fat dairy, plain crisps, excessive cooking oil etc.).
5. 10 weeks in pain has subsided a little but bloating and irritable bowel is still present.
Has anyone had similar persistent gastro issues? I am sick of the pain, discomfort and effect this has on my life. I want to find the cause so I can eliminate the problem. The only research I have found is this paper - Predictors of persistent symptoms and reduced quality of life in treated coeliac disease patients: a large cross-sectional study ( biomedcentral.com/1471-230X... ).
I understand that coeliac disease often occurs in conjunction with other food, digestive and autoimmune issues but what is it for me? I would love to hear from you.
Thanks,
Alice
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Six months after going gluten-free I was still getting symptoms; both gastrointestinal and bad brain fog. Like you, I was sure that I was strictly gluten-free.
The penny dropped one day when I had some goats cheese for lunch - and within minutes brain fog hit with avengeance.
As soon as I gave up all dairy, I felt a lot better. On the advice of my hospital dietician I've subsequently trialled the Lactofree products, but I've worked out that I feel much better when I'm completely dairy free.
No one in the medical profession seems to be able to tell me for sure; but my guess is that I'm one of the people who unfortunately cross-react to the dairy molecule as well, because of its similarity to gluten. To get it officially confirmed I would have to go back to eating dairy - and be ill again!... .
Giving dairy up was a real bummer because I used to love eating cheese and at first I had such cravings. It also provided me with a significant source of calcium.
Since then all foods containing soya have also had to go from my diet, because they were causing fatigue issues. However, for you it could be a completely different food (or a combo of several foods) that's making you feel so unwell.
Good luck in finding out what's causing all your difficulties.
Btw, I tried the links you put above and couldn't get them to work. I hope it's just my smart phone throwing a wobbly!
Thanks for your insight. What a road to have to travel! I have had to remove lactose from my diet as part of all the trials but not milk products. Perhaps that is worth a shot. At this point I would try anything, although they do as you say form a valuable part of my nutrient intake.
The links seem to be working on the desktop. If anyone else mentions it, I can repost in a comment.
Hi Regalbirdy I hope you dont mind me asking you a question on this post. I am almost positive that dairy is effecting me the same way as gluten, I have awful headaches, fatigue and mild stomach symptoms. It taken me a long time to work out but after having a pizza on Friday I think it must have been the cheese as I havent felt well.
You mention that if you were to carry on eating dairy you could be tested, I am wondering if you know whether it causes the body to produce the same antibodies as gluten would etc. I have had food allergy tests so l know I am not allergic to dairy.
I am asking as I know how damaging gluten is to a coeliac and am strict with the diet, however I really miss dairy and even though I have suspected it has been causing me to feel ill, I have been carrying on "trying" to see how much I can eat without a reaction. If it is causing the same damage as gluten I will have to be stricter, it is far harder than giving up gluten though as I have found a replacement for milk but not cheese which cuts out a lot of my favourite meals.
You have my sympathies because I was getting something quite similar. Giving up dairy felt awful at first because it was yet another range of foods I could no longer eat. It's alright now though - and I feel so much better for it. Just remember you must monitor your calcium, vitamin D and B12 levels more carefully if your going completely dairy free.
As far as the NHS is concerned, I think (from what I remember of my conversation with the dietician) it would mainly consist of a lactose challenge.
I seem to also remember that one of the Cyrex Array tests covers testing for dairy and looks for antibodies. To my knowledge the NHS don't offer this particular test at present.
Personally speaking, I already know dairy makes me ill, so as far as I am concerned it's a bit of a moot point.
As you say, it's fairly easy to find an acceptable milk alternative. As for cheese, it took me awhile but now I have mainly settled upon the Violife range. It can be a bit tricky to get your hands on it, because it's a specialist product but I have an independent health food store a few miles away who is happy to order in most things and keeps this in stock. It's a vegan cheese - so if you can, find out where your local vegans like to shop! The taste and texture of Violife is pretty good (do expect it to be different to regular cheese though) and it's designed to melt on pizza (a handy bonus!). I find have to ration myself because if I pig out on too much of it at once (I could eat a whole block in one sitting!), my digestive system protests due to it being a high-fat product.
If I can't get my hands on Violife, then the alternative for me is the Soya-Free Cheezly from Holland and Barrett. However in my opinion it's not as good, so I only buy it if I have to; and if memory serves me correctly, it's made with an ingredient that I'm a bit wary of (but unfortunately I can't remember what that is - sorry!).
If you can tolerate soya then your options will be more varied than mine; because there are the Sheese and the Toffutti ranges as well. Before I went soya free, I used to buy Toffutti Cream cheese; and I found it a reasonably good alternative to normal cream cheese. It's common for Holland and Barrett to stock this.
I don't recommend Vegusto because I reacted badly to this on a number of occasions. I think it's possible that it contains traces of gluten in quantities I can't handle. Technically, it's supposed to be gluten-free however. The other thing against it is it's very expensive.
CoYo do some very nice live dairy free yoghurt's, and are coconut based. The downside is the price - they are expensive. I understand they also do dairy free icecream but I've not had the pleasure of being able to try this yet. Again if you can tolerate soya, then you also have the choice of Swedish glace and several other makes of ice cream. If you look around hard enough, you can even find dairy free Magnum style ice cream bars in some freezers.
Hi Regalbirdy thank you very much for your informative reply. Unfortunately i have always been a fan of butter, cream and cheese, although I have never eaten loads of them, its nice to be able to have a treat such as sherry trifle which I have always had every christmas since I can remember but cant have this year without the cream. I gave up milk months ago and noticed a big difference but did not cut out dairy completely, ie would still have a bit of chocolate, butter etc. I cut it out completely last week and felt full of energy and so much better, then stupidly had the cheese on Friday night and am still suffering now. It is so much harder to cut out than gluten, it is in my case anyway.
I asked about whether it affects our bodies and creates antibodies the same way as gluten as my TTG score last year was 13 and I had been strictly GF and couldn't understand why it was so high, I was only 37 when first diagnosed. The only other explanation would be if I had eaten out and ingested some gluten.
I only went to the doctors a few times about stomach aches etc before i was diagnosed and it was only a fluke that i got the diagnosis as the clinic I went to screened everyone for CD. However know I must have had CD for over 25 years if not longer as i have had DH for that long, although this was diagnosed as some sort of dermatitis at the time. I am wondering whether the longer we have CD without diagnosis the longer our bodies are battling against the gluten and the more they become confused and are on "alert" for other things they suspect may be the gluten.
Thank you for the information about the foods available, I have never heard of any of them, I will have to go hunting for them, we have a delicatessens nearby so i will ask them if they can obtain any of the suggestions you have made. I think i am ok with soya although I did notice a bit of a stomach ache once when I was using it in my hot drinks. I bought some soya cheese from Tesco which was awful so ended up throwing it out.
I bought some dairy free ice cream from our local tesco last week, its vanilla flavour and is on offer at the moment buy 2 get one free, I don't know whether you have tried it, its in a round tub, its ok so i will go and get some more of that.
Thanks for the information about the vitamins etc, I will keep an eye on them, already have VItB injections every 3 months and found that my vit d and zinc was low but when last tested after the medication was found to be normal.
Thank you for your help, there doesn't seem to be very much information about the other foods that can cause us issues apart from lactose, however i have tried to have lactose free instead but didn't think it made any difference.
How are your levels of Iron - Ferritin - Folate - B12 - VitD. All these need to be at good levels for you to feel well and for the body to work well at a cellular level. Mal-absorption can cause levels to be low and you may need to supplement. I have read somewhere that low iron can cause gut issues.
I was diagnosed with Crohns over 40 years ago and am well since finding out that I also have Hashimotos some 9 years ago - another auto-immune issue. My decision to go gluten free is relatively new - just want to reduce the thyroid anti-bodies before they go on the rampage elsewhere. Very few gut issues now - if at all.
Hope you soon find the cause of your problems and feel better....
I don't have any paperwork of recent tests but I will ask for them next time I am at the doctor, although they are always in the normal range (whether that is low or high I am not sure). I am glad to hear you are feeling better though. Best of luck with the continued gluten free diet and thank you for your comments.
Doctors often say Normal - when in fact they mean - in range It is important for levels to be towards the top of the respective ranges and Ferritin around 80. You are entitled to have copies of your blood tests so you can monitor your own progress. Sorry have just read you are in Oz.... Ensure you post the ranges as well as the results - as labs do vary .... Am happy to help when appropriate.
Is it possible gluten is getting into your system from other sources besides food? For example, many cosmetics, supplements, and personal care products like lotions can contain gluten which is then absorbed into the bloodstream through the skin.
Hi NicaJoy. I am very careful with label checking on cosmetics and other products also. I believe I have eliminated any risks here. Thank you for your comments.
It sounds obvious but do you eat any processed foods? If so I'd really closely examine each and every brand – pretty much every time I've had illogical reactions to things it's because while they're "gluten free" they're not actually entirely gluten free (thinking particularly of the daily nausea I had at one point from "gluten-free" rice milk that had barley malt extract at such a low level they didn't need to declare it) or they've got glucose syrup in or something. And stay strict about "made in a factory with". I can only throw in that I seem to get bad reactions from quinoa, so I'd look at all those cross-reactivity things. It sounds like you're on top of all that though.
I am in Australia so the gluten free standard is even higher than other parts of the world but through out this diet I have been eating only food prepared at home by myself (in a 100% gluten free kitchen) because most processed foods have one or more ingredients that isn't allowed on the diet! I agree with your comments though and avoid anything that has a prepared in a factory with... line etc. Thank you for your help, Alice.
I am sorry you haven't been able to find the course of your symptoms . I saw a dietician and she gave me a elimination process to go through. And since then 20 years now have cut out wheat , gluten, lactose, tea, coffee, onion family, high fructose fruits, olive oil. Can eat chocolate providing it is 80 %.
I have B12 injections every 3 months and am on high dosage vit D from GP to help with mal absorption.
I hope this is of some help...the onion family was the worst one as it is in so many things...check for onion powder, in so many things.
I was hoping that the elimination diet would help me put my finger on the cause but there has been no definitive answer, well I haven't even been symptom free for long enough to challenge anything. I am avoiding onions as part of the low FODMAPs diet at the moment as well. Thanks for sharing your experience. I really appreciate it. All the best, Alice.
Hello - I am sorry you are having such a grim time. I don't know if what I have to say will help as I am not a diagnosed coeliac although my doctor thinks I have it; and I have IBS. I did an elimination diet and discovered all sorts of things that made me ill but weirdly I can now eat some of these foods eg brown lentils and eggs. However, I can only eat them in small quantities otherwise I don't feel so good. I cannot eat GF flour or polenta which I noticed on your website you use to cook with. I cannot tolerate foods containing hydroxypropylmethylcellulose, potassium nitrate, glucose syrup (I believe you have different standards for this) or sulphur dioxide. Don't know if you remember this discussion:
Hi Alice.I know how its sounds but you may never find the cause .I know its hard to accept this but it helps because sometimes all of this symptoms are stress related.I've been a coeliac for 12 years now and I still get stomach pain sometimes and IBS.Believe me when i say that I've tried a lot of investigations,consultations,diets, alternative therapys..you name it!Nothing worked!The only thing that worked for me it was relaxation,gf diet and the time to heal.Hope that helps
I have problems with dairy but jo to the extent that I have to give it up completely Iv i have on a mondy for dinner don't have again til weds. It gives me a similar symptom as to wheat and gluten but effects my lower right with pain and lots of bloating. Koko milk is great for tea and gluten free cereal. Am on B12 injections for life and this is keeping it middle range but folate levels keep dropping and seem to effect me with spacey head and IBS but no pain. i know starchy products don't help to so always rinse them well ie pasta boiled potatoes and careful on sweet corn. It always seems a never ending process but I do feel I have so improved esp pain wise
I would check out carageenan and things like Xanthan gum and buckwheat. They are in ice cream and other things like gluten free cereals. I react to these things in the same way as I do to gluten.
I would also read all the paleo blogs and books. They will recommend things like keffir / kimchi and other probiotics / prebiotics to deal with the leaky gut that gluten causes.
My favourite is Sarah Ballantyne's the Paleo Approach. Chris Kresser's blog is also excellent (chriskresser.com/). Sarah Ballantyne's book talks comprehensively about all the autoimmunity triggers - not just the Fodmap diet. Her blog is at thepaleomom.com/
My dentist's daughter has awful exzema - they couldn't find the cause, eliminated everything (they thought...), then read the Ballantyne book and discovered that if you have a pistachio / cashew allergy you are also likely to react to mangoes. They are of Indian origin, and his daughter used to eat a lot of mangoes. Not any more!
You are not alone, research shows a significant minority of adults with CD have persistent symptoms and/ or intestinal damage for several years on a strict GFD. I am one of those people and as a result of my experience am doing an MSc looking into nutritional approaches to CD beyond the gluten free diet. What I would say is that it's very personal and difficult to generalise ...I'd highly recommend seeing a Nutritional Therapist who has good experience with CD...contact BANT. Some things to consider though, some already mentioned by others:
- hypersensitivity to gluten, ie to levels below 20ppm which is the level permitted in GF foods. Try going 100% natural home cooked for a month + and see if that helps. People always look horrified when I suggest this but it's really not so hard, eat real unprocessed foods only.... Fresh veg and fruits, eggs, fish, meats, nuts and seeds, whole natural dairy if you tolerate it, beans and legumes, whole grains again if you tolerate, healthy fats like olive oil and coconut oil
- cross- reactivity: where the protein fractions in other foods mimic gluten in the body causing the immune system to think gluten has been eaten. Google it or try Foods matter, Paleo Mom or Chris Kresser for more info. Cyrex lab testing is now available in the UK via Regenerus labs
- other food sensitivities are common in Coeliacs in my experience, if gut permeability isn't healed then it sets us up for problems.....lactose intolerance v common, IgG immune reactions, sensitivity to histamine containing foods, salicylates, lectins etc afraid the list of potential triggers is tediously long
- if it's not a food sensitivity possible explanations might be Small intestinal bacteria overgrowth SIBO, parasites or fungal over growths.
- then there's digestive system issues- perhaps low stomach acid, pancreatic insufficiency, liver or gall bladder issues...CD is a multi system / organ disease with impacts way beyond the small intestine
- I'm sure you have fully explored cross contamination but supplements definitely important to check...and many contain corn which is a key one for cross reactivity...as do most GF bread substitutes
- lastly have you discussed the possibility of Refractory CD with your Consultant?
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