Really struggling with Low Fodmap Diet - IBS Network

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Really struggling with Low Fodmap Diet

meggiemog
meggiemog

I am now on week 5 of low fodmap diet - put on this as GP hasn't a clue what is going on with my digestive system and thought this may find what is triggering off my symptoms. I have the biggest issues with constipation a long with a whole pile of issues- so this diet isn't great as there's not a lot of fibre in there! I am talking to a hospital dietitian - but she's not been available this week. I am having a bad reaction to oats (I've cut them out) - makes my nose run and I have sneezing fits - and have also found out that I am really not well with anything soya at all. The soya has me in a heap of agony just 30 minutes after eating. I have cut this also , which means I am reading every single little packet of anything I try to eat or drink. Today has been the final straw - I feel like my tongue has been burnt in the middle - no soy, no oats to my knowledge - I just feel like I am getting nowhere fast. I've been tested for coeliac, thyroid and pernicious anemia - all come back normal - although the thyroid is a very high "normal". I just don't know what to do anymore! Sorry for the rant, sticking to this but want to know if anyone can give advice! I am baking and cooking my own treats and food at the moment to avoid offending ingredients but am getting really frustrated with it all.

38 Replies
oldestnewest

Hi meggiemog,

Have you been given the nhs booklet for advice on what you can and cannot have because at the back pages it gives you a guide of high fibre foods you can have , I know all about this as I suffer ibs c and have actually been on low fodmap diet for a year (now reintroduction stage)! It’s only taken so long as I’ve I have other conditions so lots of symptoms and can only complete when I can be sure trial isn’t going to be compromised by current symptoms .

Was given Schar booklet. Yes the fibre info is there - and I do eat what i can - but almost all the 'high fibre' gluten free has either oats or soya in. I am eating nuts and seeds and potatoes in skins as well as popcorn. My problem is trying to find hidden ingredients. Soya is in so many things as it is used to stabilise a lot of gluten free such as pasta and cereal. Oats are used in about 90 percent of the biscuits and bread too. I can't even eat gluten free coconut macaroons as they contain soya lecithin. Even when I get to reintroduce a wider diet I will have to avoid these. I have not been diagnosed with IBS - this is what they are doing whilst I wait to see someone in gastroenterology.

I’m on the FODMAP diet, for me it’s working, as I suffer from IBS D, so far I’ve not had diarrhoea in 5 weeks.

For fibre, try Genius soft brown farmhouse bread, as it contains fibre, if you haven’t done so yet, I would recommend you download ta few apps.

MONASH diet app

FODMAP by food maestro.

Also, not sure where you live, but if you live in the U.K., I have come across these websites that sell FODMAP products...

fodmarket.co.uk

fodmap-foods.co.uk

grufjones
grufjones
in reply to Uncle7

Hi MeggieMog

Sorry to hear you are having a tough time, the bit where symptoms are bad and you are still waiting to know for sure if it is IBS is hard.

I tried the fodmap diet 2 years back and same as Uncle7 it works for me. But it does take some work and a booklet will usually not be enough. Ideally you get a couple of dietitian consultations.

On the fibre question brown rice is a good go-to for that when following fodmap. The first weeks on fodmap can be tricky as you can end up with some bland meals. However you should know it's working for you within 6 weeks or so, worth sticking out.

In addition to the App list from Uncle 7, you should definitely try the Tummi FODMAP App. It has a really helpful food diary that scores the meal entries for fodmaps.

I have an android phone and I could not make the FODMAP food maestro app work.

Good luck

meggiemog
meggiemog
in reply to grufjones

I am sticking to this - but as I was saying in an earlier reply it's more to do with just being able to pick something up and eat it without thinking about it. I haven't had much problem with bland food as I have been using herbs and spices to add flavour as well as using garlic infused olive oil. I think yesterday was just a bad day. I am in touch with my dietitian by e-mail - and phone, and hopefully she can help me when she is back at work. A few of the gluten free branded items have E numbers that are soya in disguise - so I could do with knowing which!

meggiemog
meggiemog
in reply to Uncle7

My biggest issue where I live in UK is actually getting any gluten free bread at all! Twice I have been into Asda and they had no gluten free bread at all. I prefer the Warburtons gluten free as the texture of Genius is not pleasant. I think my frustration is not being able to pick up anything convenience food without reading all the ingredients. I am quite glad I can't eat out right now. I am eating tons of fruit and veg - but I always did. Polenta is my saviour right now - going to make biscuits today with coarse polenta, sesame seeds and sunflower seeds.

grufjones
grufjones
in reply to meggiemog

Sounds like you are on a good path - Lemon or Orange Polenta cake a favourite treat for me too!

meggiemog
meggiemog
in reply to grufjones

Polenta is amazing. Made a lemon drizzle cake using mashed potatoes as well.

oldfog
oldfog
in reply to Uncle7

I find the Fast FODMAP Lookup & Learn (for IBS sufferers) app, good for quickly finding out if a food is High, Medium or Low FODMAP - and that one is free ;-)

meggiemog
meggiemog
in reply to oldfog

Free is always good! Thanks for that.

Absolutely outstanding detailed response by Stuart24 in the "Peppermint" post by mondlee6248. Definitely worth a look

meggiemog
meggiemog
in reply to Superzob

Thanks - quite helpful! I am actually going to pay for private blood tests when covid calms down. I think I need to look at food allergies as well as SIBO as no one has ever tested for either (except coeliac). It turns out a lot of the cereals I used to eat contained oats and soya, I really need to see whether this is intolerance or allergy. I also need to get my thyroid checked again - as my temperature keeps dropping to around 35 degrees c! This is a point which I think my bowels stop working!

Yes I think Stuart24 is giving a very detailed on although I don’t understand all

Hi Meggiemog,

I'm on week 4 of the elimination phase and I can empathise! I'm trying to see the lockdown as a silver lining as I can't work but can give more time to sourcing recipes & cooking from scratch. I'll note some little things I've learnt here. They might not all be useful for you, but I hope some might help

* potatoes are my friend - I was a potato fan before but I've been oven roasting with olive oil & mashing with wholegrain mustard (but check ingredients for flour!). I put no butter or milk in the mash so the mustard add some seasoning. They've been a great 'filler' for meals.

* brown rice - I've had a lot of rice too & as another poster said, it's good for fibre

* linseeds - I got a big box from a health food shop. They're supposed to help with constipation. I'm having a little bit more each day though it's too early for me to confirm if they've helped me.

* FODMAP by food maestro - It's not free but if you're in the UK it has a lot of products listed here & I've found it's barcode scanner helpful when I'm checking if a certain product is fine.

* I've got a bit frustrated with online recipes that include stuff I can't have yet in the elimination phase. I'm also avoiding all gluten & lactose for now. I've found some useful recipes at fodmapeveryday.com/ though. They've got a handy recipe filter.

* and lastly - buy some strawberries for a treat!

As I say, we're in a tough phase but I'm reminding myself that investing the time now in learning about ingredients & recipes will pay off in the longer term....

Best wishes to you

meggiemog
meggiemog
in reply to Rossan

Thanks for that!

I have been adapting recipes and using things I have never used before like brown rice syrup in baking. To be honest I had never used polenta until 2 weeks ago - now regardless of being able to eat wheat or not - I will use this in baking! I miss eating mushrooms, cauliflower and onions. All of which I really don't think I have an issue with. Time will tell.

When I did FODMAP elimination and reintroduction I found there were hardly any FODMAPs that I could tolerate. However, I have been able to tolerate far more foods since taking Alflorex probiotic which has been scientifically studied for IBS. I wish I had known about it years ago since I wouldn't have had to be on a such a restricted diet for so long. I am also taking Linaclotide for IBS-C. Alongside Alflorex it has helped with the pain but not so much for constipation, though it does help others since it is its prime purpose. In combination I am able to each much more fibre to help with BMs.

meggiemog
meggiemog
in reply to xjrs

Its rough going. I have my suspicion that I might be a bit lactose intolerant- but not wheat. As for fruit and veg - who knows. My go to for constipation was always dried apricots and fresh orange juice with all the bits in. I can have a little of the juice now but not the apricots. I still am not diagnosed - so it could be IBS - could be food allergy, could be slow metabolism. I do know for sure 2 things are out already. So only a few million more things to try!

xjrs
xjrs
in reply to meggiemog

In the UK there is a standard protocol for diagnosing IBS by ruling out other things via stool and blood tests:

nhs.uk/conditions/irritable...

Even in lockdown your GP can send you a stool sample kit in the post, you can kick it to one side for 72 hours and return and leave it outside the practice and call reception to pick it up. This isn't something they should be 'guessing'.

If you had a food allergy, you would know about it since this is more likely to result in a health emergency so more likely to be intolerance:

bda.uk.com/resource/food-al...

Sometimes IBS can be down to having an imbalanced gut microbiome, with bad bugs having a bit of an upper hand. These bugs love FODMAPs and can cause IBS symptoms, which is why the FODMAP elimination diet can work for some people. This is where a probiotic like Alflorex or Symprove comes in. I've taken others over the years but Alflorex worked best for me. They help to rebalance your gut bacteria and reduce symptoms. If I could have done it all over again I would have taken Alflorex prior to trying a FODMAP elimination & reintroduction diet to avoid missing out on foods that are otherwise healthy.

meggiemog
meggiemog
in reply to xjrs

It's not typical of IBS. This is why I am going back to gastroenterology. Constipation is only a small part. GP said low fodmap would do no harm, which is where I am now. It has helped in some ways. As well as finding soya and oats I think there is something else that has been making me feel pretty dreadful removed from.my diet at this time. I won't lie - I am actually quite dreading the reintroduction phase as I could be in for some interesting results.

Hi Meggiemog too much guess work with some recommended diets. Have you tried the Nutriesmart food intolerance test through Alphega pharmacy chain ? The website has a location map of chemists linked to this chain all over the UK. Test finger prick test takes 2 minutes and results back in an hour. NHS has recommended food intolerance tests . The range of food intolerances is grouped into food types and includes at least 64 foods with Alphega. Other tests are self tests sent back to a lab . Some are linked to NHS. Nature's Best does a range of tests including environment but these may be found this gps or by contacting the Nature's Best website. Heard good report from this from someone online.

That's well worth looking at! I was going to try medichecks as I have used them before - their checks were coming in around £200 - but it does cover a fair bit. I could do with knowing if I have allergy or intolerance. Have had loss of taste and smell tons of times over the last 2 years - sometimes breaking out in mouth ulcers and never found out why - but I know this won't be something I can do until things have calmed down a bit.

Hi Meggiemog. Zinc deficiency might be one of deficiencies giving rise to mouth ulcers and taste and smell problems. Did you have iron and vitamin D as well as B12 and folates? My test cost 80 pounds but Nature's Best tests for 100 different foods and other allergens and that was about 100. Vitamin D tests are 25 through NHS linked labs. Mulitigrain dairy egg rice and maize may be part of your intolerances. Having being told I had no gluten problems thought I was normal but tests showed I had all these intolerances. Cutting them all out has helped.

I had a thyroid ultra,test which included vitamin D which was very low - and I have been on supplement ever since. Also my ferritin level was really high - which means I had inflammation somewhere. I have not had chance to get recheck as the pandemic happened! Same test included Vitamin B12 which was fine. I've not looked into zinc. Sometimes I wonder if I have a leaky gut and some vitamins just don't get through.

You could be right. Food intolerance can produce the bowel problems which reduce your absorption of vitamins and minerals. High levels of vitamin c with zinc may help. It has helped family who had flu and lost taste and smell for 18 months but on advice with zinc and vitamin c supplements he regained taste and smell . Do you get a metallic taste in your mouth or is a smell linked to sinus infection? Sinus can be affected by dairy even if you are not lactose intolerant but cutting it down is helpful for sinus and colds.

I have had metallic taste in my mouth, not noticed it so much lately - that could be due to my taking vitamin D. I used to take omega 3,6 and 9 with zinc - but haven't done that for years - maybe I should start that again. Funny I forgot I used to do that to boost my immune system against colds.

Think you've partially solved your problem . Going back to supplementing with zinc may well help. The high ferritin levels might be something to ask your doctor about as it can be a sign of inflammation liver renal metabolic or too much iron storage. Taking too much vitamin D might affect you too. I would go back and ask for tests for high ferritin levels and ask for explanations. IBS is also treated by anticholinergic drugs but if you think you have allergies you have to be careful. Anticholinergic drugs can be antihistamines for allergies . Histamine response may be to do with flares from inflammation from food intolerances . Suzy Cohen suzycohen.com and Isabella Wentz have written free articles about histamine responses. They are both pharmacists and really help to understand what is happening with food intolerances. I take antihistamines everyday but still cut out those foods toxic for me personally. Another drug which helped was merbeverine which only acts on the intestinal muscle spasm rather than the whole body making you sleepy. Codeine with paracetomol may help.

Thanks for that. Funny thing is last bloods I had done GP said I might have a kidney problem- then he said perhaps not and get it tested in a few months- which left me scratching my head. I just keep plugging away hoping that someone will finally put the pieces together and solve the puzzle that is my body right now.

Don't ignore the warning signs but ask when you can have tests for kidney function . You have to see the doctor 3 times for the same problem before you get a referral.

Once things have settled a bit more I will be on it. As it is even if you do get a normal referral at the hospital they are not doing anything with it. I know I still can't get any answers from gastroenterology - says there are no appointments to give.

We are going it alone. Information from healthline.com indicates that certain supplements such as zinc and vitamin d can help taste distortion. Sinus problems are a main cause of metallic taste in the mouth. Going lactase free and taking vitamin d and zinc and vitamin c may help your health. I take coconut oil as it has lauric acid which protects the immune system from viruses and streptococcal and staph. bacteria. Normally a course of antibiotics might help these sinus infections . UTI infections are easy to test for and you could ask a nurse to test for urinary tract infection and this may improve your symptoms with medication. If you phone for an online appointment with doctor you could ask for UTI urine test . You could leave your sample at the reception desk and get test results back online or through phone. You can have symptoms free UTI but you can feel off colour. If you dont ask you don't get! Take care.

I had an allergic reaction to soya today - so that is being sorted before I do anything else. I had my tongue tingling - broke out in hives and spent the afternoon in the smallest room. All because I made a sandwich for my husband!

Never realised how bad this was getting!

Taking antihistamine such as clarityn or piritese can help. We have a family problem with some allergies so keep some handy in car or home. Very strong coffee may help allergies.

Good info on BBC health page re coffee caffeine and theophylline which are present to help allergies. Very strong coffee might be useful for anaphalxis. You are on the right path with soy allergy. Peanut butter may be associated with allergies. Pistachio walnuts almonds Brazil nuts chestnuts Filbert's hazelnuts pecans macademia hickory nuts are linked to peanut allergy The test Nutriesmart links legumes with peanut allergy. Soybeans and other legumes such as peas. Cross reaction can occur with proteins in these foods. Lupin flowers can be linked to peanut and to soy. Cross reactivity between kiwi fruit hazel nut rye poppy sesame seeds birch mugwort and grass pollen. aaaa.org/ ask-the-expert/cross reactivity. Sunflower seed can be linked to mustard seed rapeseed flaxseed poppy seed . These are common in vegetable oils. The NHS tests do not cover these cross reactions.

Thanks!

I am working thru the other foods after this calms down!

Its a big puzzle. When you get to check food packets sometimes ingredients are not listed. You mentioned you were taking Omega 3 such as in fish oil. Docosahexaenoic acid found in fish oil is the best oil for prevention of heart disease and for general brain and body health. Eicosapentaenoic acid contains vitamin A and D . Omega 3 in flax seed and other foods might be allergens causing inflammation sunflower corn oil safflower oil peanut oil soy oil sesame oil canola almond oil rice bran oil hazelnut oil ?

Hello

In my opinion you know your own body better than anyone, all anyone gives you is advice, it is just that advice, the best person to know what affects you is you!

Make your own list of foods you have encountered that affect you, for me it is bread, any raw vegetables, salads, they ferment in my stomach, I can hear and feel it, then it is sit on the toilet to let my body naturally get rid of them, it drains me for days!

Other big issue I have found is stress and peer pressure! Listen to your own body, for me i use supplements to help me gain what I need, 5htp os great to calm me down plus vitamin D3, I take other she that for me help with my problems, my only prescription is co-codamol help with the pain and help reduce the D side of my ibs.

Check out a company called zipvit for advice and supplements.

Please remember any supplements take at least a month before you feel the affects.

hope this helps

meggiemog
meggiemog
in reply to Graham62a

I am not taking anything for my stomach either - I take propanolol for migraine prevention and a HRT tablet. I take cocodamol when pain is really bad or paracetamol if it is more of a niggling pain. I know what you mean about wrong foods though. Sometimes I just get this enormous gurgling noise - and the pain hits like a freight train. Other times I just feel like my face is on fire! Funnily enough they are now going on that covid- 19 causes loss of taste and smell - well I've had that on and off for at least 2 years now!!! I do find sometimes the wrong food makes my tongue feel burnt and sometimes ulcers too. That's nasty and can last for up to a week.

I'd also say stress is good for noone- I don't give it the time of day if I can help it. I am furloughed right now which does help whilst following this diet.

Graham62a
Graham62a
in reply to meggiemog

Hello

Have you tried peppermint capsule? I use a company on line called zipvit, I take 5htp, that helps with stress, although I have alverine citrate tablets for stomach pain, I have found we are the best ones to work out what foods upset us, I often see on here someone? Write war and peace about ibs, but they never say you know your own body best!

Sorry just my opinion, if it was that easy they would have found the cure for ibs!

We as individuals have to work out what works in Regards to food, medicines (prescribed) and if they help supplements.

All I can ever say is what works for me.

Other thing I use is an oil burner, I mainly use lavender, but have Jasmine and other oils, for me i use them at night to help me relax and reduce stress.

Hope this helps.

Graham

meggiemog
meggiemog
in reply to Graham62a

I will give things a try when I get through this elimination part of my diet. Theres something I haven't got rid of yet- as I have got a tingling tongue again and broken out in a rash on my wrist - I think it may be vegetable glycerine in the gluten free bread - i think that's soya - but I'm not sure.

I tend to be very careful around oil burners as I have read they can be quite toxic to cats - so with having my 3 little buddies that's out. I tend to use reed diffusers. I know they help a lot of people. I tend to listen to music when I need to relax - or have a nice warm bath! Stay well.

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