Has anyone with Coeliac disease found that after a period of time, they are having issues with lots of other food items (apart from gluten and dairy). My list is growing so much, it’s getting difficult to eat properly.
Other food intolerances?: Has anyone... - Gluten Free Guerr...
Other food intolerances?
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Ukulelelady1
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Yes, I thought I'd magically feel great once I was diagnosed with CD and went GF, in 2013. But although I'm very strict re GF, I have a very limited diet as so many things seem to affect me. Probably unknown cross contamination, or just new intolerances. Trial and error I'm afraid. But there's no doubt that being GF has generally improved my health so I'm happy jogging along doing what I'm doing 😊. Hope things improve for you.
Thanks for replying. I was ok to begin with, but as the years have gone on I’ve found I can’t eat a lot of other foods either. Would you mind me asking what other foods cause you problems?
I have issues with quite a lot of fruit, though I'm OK with most vegetables, apart from red/green/yellow peppers. I keep bread to a minimum, Maybe a couple of slices every couple weeks when I want something on toast. I've found Warburtons GF unsliced suits me best. I find even GF pasta makes me feel bloated and uncomfortable. I've replaced it with quinoa now. I'm sure I've missed a lot off. It is easier to say what I do eat - which is mainly salads, gf chutneys to have with them, gf cornflakes, various cheeses, gf quorn (I don't think all quorn is). I used to get really lovely veggie/gf sausages and burgers from Dragonfly foods but they only do Tofu now. I seem to be OK with M&S and Sainsbury cheese and onion quiches. All quite random foods but at least I'm more confident just sticking to these.
I also have a problem with fruit, but also a lot of vegetables (I’m doing low FODMAP at the moment). I’m off bread at the moment too, due to certain additives in gluten free bread, and unfortunately I can’t have quinoa. It’s strange how different things come up for different people, although I see from reading these responses, there are a lot owe have in common. It’s great you have a list of foods you are confident in. I’m keeping a food diary at the moment, to identify other suspects.
Yes, a food diary is a good idea. I started keeping one a few years ago. The dieticians I'd seen since my diagnosis kept coming up with different suggestions which always seem to cause more issues - I'm not blaming the dieticians as I'm sure it would have been helpful for less complex people. So I decided to work through a process of elimination myself. I hope you find a pattern and some answers from your food diary.
I’m with you there! I feel like I’m a complicated subject as well. I’ve seen dieticians in the past too, it’s a total minefield negotiating round food options. It can be stressful at times, especially when you think you’ve found the answer and the following week your symptoms come back. 🙈
I really can connect to you with this. It seems that if I consume anything too often my body starts to reject it. Porridge oats were the first even the GF variety...about thirty years ago. Then bananas, broccoli, then, then, then...too many to list here! When I eat out, which fills me with fear sometimes, I take a list of what I CAN eat safely. It sometimes causes raised eyebrows...but I have to ignore that! On holiday once I had white rice with sea bass (incredibly well cooked) with lemon, which was delicious, for two weeks, followed by peeled pears. (all peels upset me) Occasionally the chef cooked me some whole green beans. It was boring but I was safe. That mattered more to me than taking a chance and then suffering in the sunshine! We had cooking facilities in our apartment so I topped up on my essential nutrients at lunch time. (My consultant told me that I must strictly avoid my triggers...I didn't need telling I've had far too many embarrassing episodes to dare do otherwise!)
That sounds just like me, gradually, my list of foods I can’t eat, is getting ,longer and longer. At least I know I’m not alone, but the sad reality is that it’s happening to so many of us, from what I’m reading, yet little is done to help us.
Hi.
Yes, but not diagnosed coeliac (allergic).
Have you read the book by Elaine Gottschall. ‘Breaking the Vicious Cycle. Intestinal health through diet. - Diet for crohns, UC, diverticulitis, CELIAC DISEASE, cystic fibrosis, chronic diarrhoea’?
If not, I urge you (and anyone with digestive issues) to get hold of a copy! Especially if a strict gluten free dairy free diet just isn’t cutting it and you’re not getting better.
X
Thank you for the information. I have to say I was originally much better, but I’ve found other intolerances creeping in, to the extent that my diet is very restricted. I will definitely have a look for the book, as it might offer some pearls of wisdom. Thanks again!
You’re welcome. I’m rereading the book and it’s a real eye opener regards intestinal health. The late Elaine Gottschall was an amazing lady from what I’ve read and the research she did to cure her daughter - going to university to study biochemistry and immunology at age 47-60 years. And dusting off all the original research from the 30s, 40s, 50s that had been forgot since gluten was discovered; and hypothesising the mechanisms to do with gut bacteria of why the specific carbohydrate diet (SCD) works (Dr Haas diet originally).Gluten is only part of the story and why only so many get better on gf diet while others don’t.
The books available new or second hand on the rainforest site ☺️ .
X
Thanks Researchfan,
Hope you are well. Thank you. I have just bought it. I had my gut microbiome checked - not a good state. I am currently studying a diploma in the Biochemistry of Nutrition.
😊
Hi Narwhal10 🤗 .
That’s brilliant! I’m well jeal!! Biochem of nutrition - cool. I love biochemistry. You’ll probably enjoy Elaines book - provides all the references 🤓 .
Hope you’re well too. And your gut micro biome recovering.
Thanks, I been slowly reintroducing dairy to test my tolerance after elimination diet. Not going too good. I will have to go dairy free again 😊 . Forgot what the brain fog was like for the main 😵💫 . Managed to gain a couple pound in weight though 👍 .
Good to hear that you’ve gained a few pounds 😊. I hope you manage some more. Sorry about the dairy, it’s just not good stuff really for our guts.
Lactose, casein. It may taste delicious. Is it worth the joint pain, brain fog - erm sorry what did you say ? Who are you ?
It’s only a diploma as fatigue and brain fog. 🤣 My poor biome will take time and patience to nurture.
😊
It sounds very interesting! I’ve ordered the book! Thank you again.
Hope it helps 😊
Me too! Thank you!
Hi Ukelelelady1,
Yes, my list is too long. It is easier to tell you what I can eat. I went functional. Had gut microbiome checked and bought some Toxaprevent from the company. I reacted so violently to SIBO breath test. I’ve had herbal antibiotics and antibiotics. But as Researchfan says gut microbiome plays a crucial key.
Best wishes
I'm curious what herbal antibiotics are? I've done a lot to balance out my gut, but I think I have a sinus infection. I'm so reluctant to see the GP, in case they prescribe antibiotics.
Hi Cooper27,
Sorry to hear you are poorly. Sinuses ☹️ that woolly head is yuck. So I used Berberine (eBay - shop 5’greens - no nasties) and oregano oil (I got Zane’s on Amazon). Found the info about those 2 on healthunlocked (Id typed in SIBO) and I gave world of Gastroenterology medical literature given to gastroenterologist.
If you are taking other medication, Berberine can interact. Bit of research on it.
longdom.org/open-access/ber...
Apparently, only take for 2 weeks.
All the best
As long as you don’t have asthma, you could have steam inhalations with essential oils in. That’s what I use for sinus problems - I’ve suffered for years with them.
I've been trying this too, with menthol crystals 
and saline nasal spray too, that helps a lot.
I didn’t think you could still get menthol crystals, I haven’t seen those for years. What brand of saline spray do you use?
I bought both in a little boots pharmacy They're just boots own brand. To be honest, I wouldn't have known about menthol crystals if the assistant hadn't suggested them - I keep accidently overdoing them though 😁
My mother used to do them for me as a child, many years ago, when I had a cold. I must try and get hold of some.
Oh goodness! That sounds like a boat load of problems for you too. Strangely, my adult daughter is having the same issues (although never diagnosed coeliac) I will mention the book to her as well.
One of my sons is going down the same route as me...as he hits fifty! Think there has to be a genetic link to a lot of these issues.
Not coeliac, gluten intolerant. Cannot eat any bread,gf or otherwise.
Dairy.
Chilli's
Cucumber
Sounds like you could have leaky gut (cell wall membrane of gut becomes permeable and let’s food through into blood stream, body then reacts to foreign invaders as if allergic). I had this and worked with a naturopath to heal - series of supplements, herbal remedies, avoiding triggering foods whilst healing etc.
That’s interesting. I did once think it could be something like that. I will look more into this, thanks.
Absolutely I have. It has been crazy. There are so many foods now that I am intolerant to so when eating out I take a list of the foods I can eat safely with me. 😒
That sounds like no fun at all. I’m starting to feel the same though, it’s getting ridiculous. Thanks for replying.
You might find, like I did, that being celiac was also associated with being vitamin B12 deficient, once I found I was B12 deficient and got that addressed by injections, within a year I was able to eat anything other than gluten.
That’s an interesting theory. I’m not sure if you can get tested for things like that on the NHS. I can only ask though.
Hi Ukulelelady1,
You can get tested for vitamin B12 deficiency on the NHS but again doctors have VERY poor understanding of it as it measures active and inactive (up to 80%) can be inactive). I’m on the PA society here as well as I have injections.
Sorry, we are all throwing lots of information at you. I keep a symptoms, food etc diary. Read, ask for help here and all the necessary.
All the best,
Thank you. It’s ok, the more help the better. I guess it’s just a matter of playing food detective to find out what is causing the problem. Every time I think I’ve cracked it, something else happens.
I pretty much just stick to meat, veges, fruit and raw dairy. Most of what we eat is from our own garden and trees, and from others who also have gardens and livestock. For the most part, I don't eat anything in boxes, cans, etc; in other words, processed. We are fortunate to live 5 miles outside of town and have enough land to support this lifestyle and have lots of neighbors and friends around the outskirts of town, doing the same. Most of the mom and pop grocers, in town, provide fruit and produce from those who live outside of town. We have two large commercial grocery stores here, which I never have any reason to go into.
That sounds great. Unfortunately I can’t eat dairy, and I have problems with a lot of veg and most fruit. I’m running out of options.
Just eat what agrees with you. As long as it's fresh and of good quality you should be fine. Keep in mind most primitive peoples have had a limited diet compared to ours and their health was superior to ours. They ate fresh from the ground, bush or tree and fresh killed. And, if they used dairy it was always raw.
Depending on what your symptoms are… have you considered bile acid malabsorption? I spent years after coeliac diagnosis trying to work out which foods were causing ongoing (or latterly worsening) symptoms. When all the time it wasn’t foods as such, just my damn body again 🙄😀. Meds for BAM have been life changing. Good luck, it’s so miserable when you think you’ve got an answer and are still unwell.
Ukulelelady1 in reply to
That’s an interesting one, I had never even heard of this. You say the medication has been life changing, so presumably treatable?
in reply to Ukulelelady1
It is. It’s a bit bit and miss (ie occasional rough days - maybe once or twice a month) but utterly life changing for me (symptom was diarrhoea). It’s medication I am assuming for life but I think it is known to heal sometimes). There is also a link to coeliac (no idea why). When first diagnosed with it I declared it on travel insurance and the automatic next answer was “do you have coeliac disease”. Weird. One thing you still need to watch is to limit intake of fat but I’m not that careful tbh and am generally fine.
in reply to
Ukulelelady1 in reply to
At least there’s hope to cling on to then. I hope my doctor is amenable to this when I speak to her. Some doctors don’t like that you’ve done your own research into things. At the moment, they won’t see us anyway, in most circumstances. To I’ll keep my fingers crossed.
Due to Covid, I haven’t been called for my usual annual check-up and the coeliac clinic, which is understandable, but when you get issues cropping up, you really need to see someone.
Thank you so much for sharing this. The only other thing could be lack of vitamin B12, as another possibility, and given that I don’t eat meat, this is also possible. I’m going to cut back on the fat for now and see what happens. I appreciate your help and thank you for the link (below). 😊
I tend to use the “I’ve got a friend who…” line with doctors. Good luck x
Ukulelelady1 in reply to
Thanks, I’m probably going to need it! x
Such a lot already said it's a mind boggling minefield. So had ibs and migraines most of my adult life but now have cerebellar ataxia which has led me to doing lots of research to try and stabilise. You must be thinking where does CD come into it so when a friend mentioned gluten and neurological conditions out of desperation, not getting any help from doctors, I went gluten free.
The positive effects were quite dramatic at first.
Then found a nutritional therapist who understands the effect of gluten. Had a private cross reactive foods test and yes dairy, rice and buckwheat came back and other foods to eat sparingly.
I was just so fed up of years trying to find trigger foods it was well worth the expense. And having a knowledgeable therapist offer advice too.
So after years of low fodmaps, blood sugar controls and various probiotics etc. Now even though my diet is very limited ( rice is in so many foods) things are now more yes or no.
Tried a gluten free sandwich to see what woul happen and won't be doing that again!
Gluten in my opinion is a problem behind many autoimmune conditions, health professionals need to up their game and look at the bigger picture for many of us. And also listen to the patient and not just rely on blood tests.
Leaky gut and microbiome is another aspect they don't understand.
Some of the better supplement companies will provide expert advice at no cost. Some supplements bought off the shelves are not of a good quality and bioavailabilty is low.
The bottom line is, I spent years trying to fathom out the problem foods and now with help my health has improved dramatically.
Unfortunately this went on so long that the gluten effected me to such an extent I now have ataxia, but still the doctors don't recognise it!
Take care of your self and your health, we only get one chance at life!!!
Wow! Doctors don’t recognise it? That’s astounding! I’ve heard of it, and anyone that’s ever contacted Coeliac UK has heard of it. That’s absolutely dreadful.
I must admit that I was originally diagnosed with IBS years ago, and after trying to manage for many years, it got worse, and that’s when I got my coeliac diagnosis. I too suffer migraines, and I will get one if I’ve accidentally been contaminated with gluten, as well as digestion issues, without being graphic. I was just discussing leaky gut syndrome with my daughter, which is not recognised as a condition in the U.K.,but merely a symptom, I believe.
It sounds you have had many issues if your own to contend with. It’s hard when you have to do all the detective work yourself. You’re right of course, we only get once chance, so it’s important to get it right. There are so many people having problems, you’re right medical practitioners do need to up their game, we shouldn’t be left to find the answers out for ourselves.
Thank you for replying. 😊
Coeliac is complex and unfortunately the complexity is poorly researched and poorly acknowledged by healthcare practitioners. Gut biome can be interfered with significantly, gut bacteria impacted, gut permeability effected and the actual villi, if flattened, will not be producing the enzymes that healthy villi produce. Anyone diagnosed with coeliac needs to follow a good protocol for healing the gut, and this is not something the NHS recognises. So-called 'gluten free' foods should not be touched or should only be consumed sparingly and in careful checking if they do have measurable gluten (most do). Food intolerances are quite common with coeliac/non-coeliac gluten intolerance. NHS dieticians, should you ever be referred to one, are utterly hopeless, so if you want to go the dietician route, find a good quality functional dietician privately or do your own research online. As has been indicated in other comments, dairy is common for intolerance but may improve as the villi heal, other non-gluten grains have proteins that may mimic gluten, and some other foods are cross-reactive e.g. soy and sesame. You may also still be consuming some 'hidden' gluten if eating out or relying on commercial gluten free foods. You are going to, unfortunately, have to become your own doctor on this one as you will sink fast if looking to NHS for coeliac and additional intolerance advice. Worth also checking out 'histamine intolerance' as that seems to be appearing more frequently on here as an issue.
Ukulelelady1 in reply to
Thanks Benjamin, I’ve had coeliac disease for a number of years now, so by gut has already healed. (Which showed that to be the case on a further colonoscopy). Obviously I’ve had blips, where I have had cross contamination, which was not within my own control, because from my own standards, I keep a ‘very tight ship’ where gluten is concerned in my house. I have recognised, especially after reading some of your other posts in the past, that gluten can sneak in through so called ‘gluten free’ foods and other grains and have taken commercially produced gluten free foods out of my diet.
I have seen dieticians in the past, and they have sent me down low FODMAP routes, and that’s when I came unstuck, because, it worked at first, but then other things were creeping into the list of foods I couldn’t tolerate. Also, I was one of those people that still couldn’t tolerate dairy, even after my gut healed, so I never touch the stuff.
I will look into the histamine intolerance you mentioned though, because I must admit, I hadn’t thought of that, and it’s an excellent point!
I notice from a lot of your posts that you have had a lot of issues, I was just wondering, do you still have issues, or have they settled down with you being so ‘on the ball’ with dietary information and excluding so many foods? Thanks for replying, I appreciate your comments.
in reply to Ukulelelady1
That's good that you have repaired the damage from coeliac. That is a good achievement in itself, which clear makes the other reactions more confusing. I've reached point now where I avoid all commercial GF and that seems to be the only thing that keeps me healthy. Any time I chance anything, it gives me coeliac symptoms. And evertime that happens, it makes me so angry that we have to play a gluten roulette game whilst the food manufacturers are handed a get-out-of-jail free card at all turns with the codex level and the woeful testing/labelling requirements. I've not looked into any other conditions beyond coeliac, but find keeping sugar to a minimum seems to help as well. The histamine intolerance has been mentioned quite a few times on here, and it seems to cover a broad church of reactions that might explain why a lot of people struggle. It's not nice when an already limited diet becomes an ever decreasing circle of options so certainly feel your pain on that one.
Ukulelelady1 in reply to
I understand exactly what you mean, and I definitely agree with your stance of keeping away from processed, commercially prepared foods. I can’t eat codex wheat starch, and would never ho near it, having tried it once or twice in the distant past, because I still had a reaction.
It’s interesting that you should mention sugar, because I can’t have too much of it. Also I am reliably informed that, if you have inflammation already in your digestive tract, sugar will make the inflammation worse.
I feel like you, in that I’m going round in ever decreasing circles, and just want to feel normal - whatever that is.
Hi yes, I got my CD diagnosis in 2011 and haven’t felt as good as I thought I was going to.
Despite trying to keep a food diary I couldn’t fathom what foods triggered issues for me, one day I would eat something and be ill, the next time I tried the food I would be ok. It can really send you round the bend!!!
About 4 months ago I did a York food intolerance test, the main food they said I was intolerant to was yeast, since I have followed their diet, which they say to do for 3 months and then introduce the foods back to see if you get a reaction, I am no longer burping all of the time. I don’t know whether this is the full picture for me ( I did suspect sibo) but its certainly helped.
I tried some mushrooms last week which is a food high in yeast and they certainly caused a reaction, I did think at the time it would be easy to think I had been cross contaminated.
That’s interesting. I did once do an intolerance test, years ago, and yeast and mushrooms came up for me, and cheese. These days I can’t eat any dairy, so I wouldn’t eat cheese anyway. I did manage to re-introduce mushrooms and yeast, but when I recently ruled out all gluten free bread because of E464 and other chemicals, I’m wondering whether it’s yeast that has come back into the picture and not E464. One of my daughters also has a problem with yeast and stopped eating bread.
You’re right, it does tend to send you round the bend, when you have a food and it only sometimes causes a reaction. I’m wondering whether it depends on a combination of other foods eaten in the same meal. I can’t eat mushrooms now, as they are a high FODMAP food, but I do seem to be ok with oyster mushrooms, which are ok on low FODMAP diet. I’m still keeping my food diary going, because, I believe the answer will be in there somewhere, if we keep at it.
hI Ukulelelady1
Thank you for your reply.
If you or your daughter miss bread I can recommend the soda bread recipe in Make anything gluten free by Becky Excell. It has no yeast so not a problem. It is easy to do and I make it every week now, 4 at at time, cut them in slices and freeze. I use Asda GF plain flour which costs 45p a bag, so much cheaper than buying GF bread. The crust is really crispy when you toast it.
I also make sultana scones which I find don't upset me despite having eggs ( egg white was another issue for me) in the recipe.
The other thing I have just found is Flora vegan butter in a foil wrapper like proper butter, its much better than the vitalite I have been having.
I am just looking into taking some oregano tablets to see if it will help with the yeast issue now I have read the other posts.
Hope the above is helpful
Thank you so much, that is very helpful. I do miss bread. Years ago, before I was diagnosed with coeliac disease, I used to buy soda bread from the supermarket just to avoid yeast, but I haven’t been able to find a decent soda bread gluten free recipe since my diagnosis. I forgot to check Becky’s website. I’ll have to put her book on my Christmas list 😁. I’ll also look into the Flora margarine (does it have soya lecithin in it? That’s another thing I can’t tolerate).
Hope the oregano tablets work for you - might sound like a daft question, but are they gluten free? Sometimes I get that bogged down, and focused on one particular thing, I forget to look, especially as I’m intolerant to so many things 🙈
Hi again just got the Flora packet and it doesnt contain Soya lecithin, it is sunflower lecithin so that may be ok for you. I like it anyway, I have yet to find a nice dairy free cheese.
I looked into the oregano tablets after reading Narwhal10 post on this thread, they are Zane Hellas, Oregano Oil Softgels , whilst having a look again I found another product by Zanes called Candidfree softgels these are more expensive but say they support gut health and intestinal flora, they are both on Amazon, I am going to look into it again when i have more time but they are both GF
Thank you, that’s really helpful, it’s years since I was able to have soya. I’ll see how I get on, I might try the oregano tablets. I’m doing everything cautiously, just to make sure I don’t fall into anymore food traps. Gut health is very important for everyone, regardless of coeliacs etc. It’s easy to focus on one particular issue, and forget to look at something else. I got my Vitamin B12 blood test done on Friday, so I’ll wait to see if that shows anything there. I would love it, just for a change, for it to be something simple, that’s easily put right!
Hi again, I have my oregano tablets coming today, I went to the Zane website and couldn't see the other medication so just went for oregano ones as they had a lot of good reviews, they are marked gluten free.
I am fortunate that I don't react to Soya, its the milk I have in my drinks.
None of my B12 tests were low enough to be automatically put on the injections, however they were low ( iron was the same ) and the GP did provide them, the injections were all stopped at our practice with covid and I take the tablets now, when I didn't take the tablets I found my legs went in cramp on an evening. Good luck with it all.
Thank you. I hope they work well for you. It’s always good when a plan comes together. I would image your injections would be enough to at least boost you to begin with, and hopefully just taking tablets will prevent you from being as low again. I didn’t realise that B12 deficiency could give you cramp, although I guess everyone is different. Let us know how you get on with the oregano tablets. Best of luck to you too.
thank you I've just taken one of the tablets, I will let you know if I get any good results, at the moment I am on a lot of supplements but if they work then it will be worth it, take care
Thank you! Absolutely, they are worth taking if they do you some good! 😊
I was diagnosed with Coeliac Disease about nineteen years ago. Was very ill and lost a huge amount of weight. On a gluten free, lactose free and yeast free diet. But my tummy has never completely settled. I have to take Loperamide is leaving the house. This week I have been prescribed Creon 10000 Pancreatin Capsules. To take one or two three times a day with meals. It is thought the autoimmune Coeliac disease has attacked my Pancreas and it's not making enough lipase, amylase & protease so tummy has never settled. So this could be something others can think about if they are not ok on a gluten free diet.
Yes, and the list grows. I don't think coeliac/celiac particularly well understood and health professionals think switching to commercial gluten free alternatives is the answer - it's not. Main culprits I think: 1) gluten free not actually being 'free of gluten'; 2) testing for gluten not even required; 3) dire cross contamination in restaurants/cafes etc; 4) gut biome gets messed up and needs resetting; 5) other proteins mimic gluten; 6) lectins - gluten is one, and many others may start to cause issue. Research and medical profession are entirely off the mark with coeliac/celiac and we suffer as a result. You will, unfortunately, have to figure out and find a way on this one as it's unlikely to come from a doctor.
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