# starting FODMAP without dietitian's help



## oscillate.wildly (May 19, 2013)

Hey everyone,

I very much need some advice! As you may see from my other post, I have decided to give the FODMAP diet a try. In a nutshell, I have IBS-C with lots of bloating and exhaustion. I usually have mild discomfort a lot of the time (I think this is from the constipation), sometimes quite severe pain in one side of my lower abdomen that will last a day or so. I don't fell like I pass much wind. At the moment I am still quite constipated but not as bad as I have been.

Anyway, I have been seeing a GI in Lancashire who has not mentioned anything about diet except to 'see what works for me'. She think laxatives are the way to go. I have now moved to Scotland and I am in the process of switching to a GI here. There referral could take 6 weeks from now.

I have found that there is a dietitian who is trained in FODMAP in the same hospital as the GI I will be referred to. I would hope that within 8 weeks I could get an appointment with them.

What I really need advice on is this: I don't know whether to go ahead by myself or wait. I have spoken to the Head of Service for the Dietitians in the area (to find out if there was a FODMAP dietitian) and she sat that I should wait until I have help from the dietitian. I have also done lots of reading and have read that the diet is unlikely to be successful without supervision.

Also, I do eat yogurt and a small amount of soy milk, and I do not think that I am lactose intolerant. I feel that if I were to start with a lactose intolerance test and also a fructose intolerance test (if available), then I would certainly find the diet easier if I had a starting point.

The disadvantage to waiting is that, of course I will not feel as good if this could help me, and if I am able to follow the diet myself then I could be at the point of starting to reintroduce foods into my diet by the time I see the dietitian.

The advice of the person I spoke to was that I should eat as normally as possible, as if I exclude lactose and gluten etc then the breath tests will be abnormal (as I will have been excluding the foods until then). Can anyone advise on this (I am negative for celiac)?

I am going through quite a rough patch at the moment so this is proving to be a big challenge as it requires so much focus. I am also worried about not getting enough nutrition, as things like yogurt are my only large source of calcium. If it turns out that I am not lactose intolerant, then I will have been avoiding this group unnecessarily for all that time.

Also, one idea would be to just limit FODMAPs until I see the dietitian, but not totally. So I would still have small servings of yogurt and soy milk, and perhaps tortillas that are mainly corn but with some wheat flour added. I am not sure if this would help or if FODMAPs need excluding completely and therefore would be a waste of energy and time.

OK my post is getting too long now! I would really, really appreciate any thoughts you all have about my situation.

Thanks









Emma


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## Shaylu (Feb 12, 2013)

Hi Emma
You have not mentioned what other test for listen you are waiting on. If you have had celiac tested and was negative than I am not sure there are any more tests that the GI will do? Maybe find out some more on this. If you have not been tested for celiac than you should carry on eating wheat etc until tested.

With regards to lactose test I am not sure if you have to carry on eating/ drinking lactose before the test. I am still waiting on my test! Had the celiac test back in November. Started myself on FODMAPS in February as I found out about it when no one at the GI gave me any information other than ' you are not celiac'. I asked for a referral to a dietician and got the appointment in April. At the appointment I was only given leaflets on FODMAPS and do and don't lists. Since I had been on the diet for 2 months by this time I knew more than the dietician! So the appointment just confirmed I was on the right track. I have lost a lot of weight which is a combo of the diet and also the effects of a couple of 'incidents' of eating the wrong stuff and for that I have to see a non FODMAP dietician which is ridiculous as she suggests non FODMAPS foods to eat! So in all I would say you are better off starting on your own as long as you can confirm the above points about celiac tests and maybe find out if the lactose test is based on eating lactose for a period before the test.

Btw, Brie is low lactose so you can still have that on FODMAPS if you were to give up dairy.

Best of luck


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## ashleigh3160 (May 25, 2013)

Hi Emma!

I'm Ashleigh, living in Melbourne, Australia. Th FODMAP diet is incredible! there is an amazing bible you need if you're going to seriously try it, you should be able to get it online from a big retailer like booktopia.com.au

I cannot highly recommend this doctor enough! google Sue Shephard, shes a local Melbourne doctor who specialises in food intolerances and IBS. she has written many books jam packed full of recipes for different intolerances/IBS

At the moment, her most recent book is called the Food Intolerance Management Plan-its full of information on IBS, and all about the FODMAP diet. it comes with a 4 week management plan, and loads of delicious recipes!

How are you finding things?

Ash


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## ashleigh3160 (May 25, 2013)

Oh its me again- I accidentally skipped over part of the post.

I've done the lactose and fructose testing, for me they were negative. Despite this, I do find keeping a gluten and fructose reduced diet much easier in controlling my symptoms and avoiding attacks-my tummy tends to violently disagree with what I eat sometimes, and causes significant pain, constipation and the runs all at once-not fun.

So far, because i love food so much, I find that leaving out huge parts of what i love to be... amoral. So for myself, and I don't know how it might work for you, I find that as long as i have two meals that are gluten/fructose free/reduced, my tummy is wonderful and regular like a normal person!

I know that in the UK you have alot more access and availability to gluten free foods and products than we have in Australia, and there are so many books that can help you with it.

Please let me know how you go with everything,

Ash


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## Kathleen M. (Nov 16, 1999)

The thing is wheat contains fodmaps so gluten free may be more about reducing fodmaps than gluten (depending on what you replace the wheat with)

The OP might consider rice or almond milk if they really want to reduce fodmaps. Soy milk can be an issue. Yogurt can depend, a lot of that is what all else is added to it (what sweeteners, fruits, processed food additives).

Yogurt is lower in lactose than milk but may be something you will want to avoid in a full elimination trial.

For some people eliminating every fodmap as much as possible for a few weeks to see if the diet really helps is a good idea. Then add back in small amounts of various foods with some fodmaps to see how much you can tolerate. If you don't eliminate everything at the start and you don't feel a lot better you may not continue with the diet because you are eating enough stuff that is still causing symptoms.

If you have access to a trained dietitian I would certainly take advantage of that. And often they do want you on your standard diet before tests to get a good baseline of what has been going on without any reductions from your new diet, or the adapting to the new diet your colon bacteria will go through. If you know how it has typically been and you need a retest after trying a treatment you get better data to see how much it may be helping.


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## oscillate.wildly (May 19, 2013)

Thanks everyone.

The tests I am talking about are lactose and fructose malabsorption. It would help me greatly to know if I can eat dairy or not (provided they don't have additives - the yogurt I have been having is plain yogurt with nothing added (http://www.tesco.com/groceries/Product/Details/?id=258559978) and I normally get through a 500g pot in 4-6 days. So not that much.

I have asked this in my other post but might as well ask here. It is recommended sometimes that you can have low-lactose cheeses, such as brie and the hard cheeses. Does this mean that very small amounts of lactose are no problem, or is it a case of you must have absolutely nothing. I am thinking about the milk powder in the Options hot chocolate I have (mixed with hot water). I only use 1 tea spoon at a go and it seems that this would be a very small amount of lactose.

It is the same with things like stock cubes and worcester sauce, chilli powder etc. I am excluding them because they contain very small amounts of onion and garlic. I would expect that such small amounts would not be too much of a problem and that it is more about sticking 1/2 onion in your meal. But I may be completely wrong! I am just trying to get an idea of what kind of restriction is needed. I am going to go all out but it would be very helpful to know if very small amounts of the offending foods (like the equivalent of a sprinkle garlic that would come from chili powder with added garlic powder, or the milk powder in 1 tea spoon of hot chocolate, or soy sauce for that matter) would really be an issue.

Again, thanks very much. I think I am seeing improvements. My constipation is still not great but I am trying to avoid laxatives. Maybe I will take one to get me started. I slipped up yesterday and had a choc-ice and some yogurt, so I now feel annoyed at myself. The rest are in the bin 

Thanks for your help

Emma


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## Kathleen M. (Nov 16, 1999)

All fodmaps, lactose and fructose included are things where the amount of gas produced is directly related to the amount of the substance you eat.

Hard cheeses and aged cheeses generally have virtually no lactose left as the bacteria have been eating it fo so long there just isn't much if any left.

Usually in clinical studies people who have lactose intolerance and have symptoms from lactose intolerance can tolerate small amounts of lactose, usually up to a few fluid ounces of milk's worth. So a splash of milk in things isn't going to hurt, neither will hard cheeses.

It is not an allergic reaction where even one molecule sets off a huge chain reaction.

It may also depend on how many other gas causing carbs you are eating. If you are close to your limit you may find smaller amounts of milk are a problem than if you are eating hardly any fodmaps and making very little gas.

Also depends on exactly how sensitive you are to gas volume. Even among IBSers some people tolerate a lot more gas than others.

Generally you start by avoiding ALL of it to see if the diet helps. Then you can add back small amounts of things to see how much you can tolerate.

Fermented soy will be tolerated better than soy that has not been fermented. Everything that is fermented outside the body is that much less that will be available to be fermented inside the body.


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## SamFODMAPs (May 27, 2013)

Hello Emma,

I am from the UK and in a very similar situation myself. I have IBS-C which I have to manage with daily stool softeners (Movicol). I found out about the FODMAPS diet in January and started following it without a dietitians help in early January. After the initial elimination phase I started introducing some foods but in a rather ramshackle, unplanned way. Now I eat around 75% of my food FODMAPs free but every now and again I eat some in a meal. I also have to avoid red meat completely, can't eat this at all! When I eat some FODMAPs I try not to stress about it and I just make sure that the rest of my food that day is FODMAP free.

I have found that the diet has massively improved my symptoms however it's so, so hard to follow 100% of the time. So I asked my GP to refer me to the local hospital dietitian service and I have my first appointment on Weds this week. My aim is to try and see whether the dietitian can help me eliminate some foods which I don't need to cut back on. I agree it would be so much easier if you could just be tested up front by your GP for the lactose and fructose intolerance. That was kind of my plan with asking to see the dietitian. But in all honesty I don't have high expectations for my appointment this week. I will be amazed if the dietitian has even heard of the FODMAPs diet. Despite all the research and evidence, the National Institute for Clinical Evidence (NICE) guidelines don't mention FODMAPs at all, which kind of makes me think that most clinicians in the UK won't be very bought into the diet unless they have taken the time to read the research themselves.

I will let you know how I get on on Weds but would be great to have another British person to keep in touch and compare notes with! It seems that despite the fact that there are a lot of gluten free goodies over here, the Aussie and American medical establishments are much more aware of the FODMAPs diet and there is more support for people who want to look into it. Perhaps I'm being a bit negative but that's my impression!

Best wishes

Sam x


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## oscillate.wildly (May 19, 2013)

Hey Sam 

Sorry to take so long to reply. I know this may sound a little bad (not meant to) but it is a relief to find someone in a similar position. Obviously not happy that you are having problems, I am sure you know what I mean!

How did your appointment with the dietitian go?

I have managed to get a lactose breath test for early July (don't you just LOVE those waiting lists....). This was an old appointment that took 3 months to go through and so I never made it as I was back in Africa on fieldwork by then. Anyway I was able to reschedule.

Now I have found somewhere that does frutcose tests for £69 by post (or £60 if you can make it to the clinic in London). They are called Biolab. I have had a few positive emails from them. When I can afford it and after I have given this diet a bit more time, I will seriously consider getting a test. It is costly but not as much as I have seen and that could be worth it to have a definite answer. Maybe it's because I am a scientist but I will always favour something concrete over my own experiments, ha!

Can I ask you about Movicol. I am also on this, but I try to not take it as I feel it just makes me more bloated. I think it does anyway. What is your experience, and if you don't mind, how often do you take it and how much? I know we will be different but it would be good to know your experiences. I now take the odd sachet a day but I am scared to. Bloating and tight pain (like someone is tightening a belt around my belly in the inside) are my problems, and of course bad constipation. A few months ago I didn't go for 3 weeks and was in lots of pain. I was in Lancashire, away from my registered GP in Fife, and the doctor wouldn't help. In the end I went to ER because I was scared. It wasn't the best thing to do but I felt I had no other option and no-one had checked for anything more serious.

Anyway, let me know how you are and how you get on. I am trying to see a dietitian but the only one trained is far away and it is unlikely I will get an appointment for 2 months or so. I have decided to try this diet by myself. This is against the advice of every dietitian I have come across so far, but what can I do? I am really worried about not getting a balanced diet but perhaps a strict meal plan is the way to go. It is such a headache and I am making a few little slip ups (I think) but if it could help then it is worth it.

Access to info is the worst. I found a good site by Kate Scarlata that has an up to date list and is very helpful. I have gone back to my morning coffee to try and help as I would rather have a little pain/discomfort and something happen than nothing at all! I am also going to make spelt bread this weekend and will see how that goes. I am so excited about that!

If I get anywhere with the NHS such as those well guarded leaflets/handouts I will certainly find a way of getting them to you. I know they do not give them out without an appointment first as they say you need guidance with them.

All the best
Emma


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## SamFODMAPs (May 27, 2013)

Hello Emma,

It's great to have someone to be in contact with about all of this. Did you manage to get the lactose test on the NHS? That's pretty good if so. I have seen the fructose tests via Biolab as well - my only question with this was that I thought your GP needed to refer you. If your GP will do this that's really fantastic.

You definitely have a similar approach to it as me - very scientific! I'm not a scientist by trade but I work for an evidence-based research charity and my instinct is to investigate things properly if that makes sense. Also, with IBS-C it's difficult to tell for sure what things are triggering the symptoms because you don't have an instant reaction (unlike IBS-D), so to have those tests would be so useful.

I have been doing the diet entirely on my own without the help of anyone since January and I was fine. I agree that it's against the recommendations of dietitians but it took me two years to get the GP to send me to the dietitian and I just don't think that the support exists in the UK in the way it does in other countries. The diet sounds really, really restrictive but you can find ways around things. For example, I buy gluten free bread, eat potatoes, rice, oatcakes, quinoa and gluten free pasta for carbs. I eat a lot of chicken and fish and veggies. For dairy I just buy the lactose free milk and lactose free cream which you can get from the supermarkets. I still have a small amount of butter and hard cheeses like cheddar and feta because these contain hardly any lactose at all. I would be really happy to email you some ideas for recipes and meal plans if that helped? I agree there is an absolute lack of information, particularly in relation to British and European food. Let me know if this would help in some way, The Monash University app has also been really really helpful in terms of letting me know what I can eat and what I can't eat.

I went to the dietitian and amazingly she was trained in FODMAPs and had been on the King's College London training (which originates from the Monash University, which is where it all started - you probably know this being a scientist!) She gave me most of the infamous booklets and I could get them scanned in and sent over to you by email if that helped? Anyway she is sending me a separate booklet which outlines how I should introduce foods back in to 'test' them (she forgot to bring it on the day!). I must say this is the bit that I've found the most difficult to do on my own. So I'm looking forward to trying this as soon as the booklet arrives. The first thing I'm going to test is garlic, as I've missed it so much. The very good news is that according to these booklets she has given me, chocolate (including milk chocolate) contains only tiny amounts of lactose and we're allowed as much as we like! I never knew that and have been only eating dark chocolate for months. I've also learned to cook some fantastic chocolate brownies which has helped morale no end... Plus we can always drink wine 

I have recently moved from Movicol onto Laxido and I must say I prefer it. I always take it religiously every morning after breakfast, in a small glass (maybe 150ml of water, mixed in). I tend to eat either gluten free toast or porridge made with rice milk for brekkie and these are pretty 'safe' foods, plus I will have fasted all night, so my stomach doesn't seem to be too affected by Laxido at this time of day. Now if I was to take it after supper it would be a different matter! There have been times when I have taken it after eating a 'rich' chicken dinner, eg lots of oil etc, as I've forgotten to take it in the morning, and my stomach has been very bloated and quite windy afterwards. So I do think that the time of day that you take it makes a difference.

Another thing that has helped me - for years I was taking probiotics religiously every day. I stopped this last month and I do feel that my IBS has been a lot better since I stopped. This suggests that far from helping, perhaps the bacteria in the probiotics were actually making things worse.

It sounds as if you have had real issues with your IBS, I really sympathise, I know what it's like. The times when I haven't been to toilet properly for several weeks have usually been triggered by red meat for me - for example, a steak with quite a lot of fat in it. Is there anything that you're able to identify which are absolute no go areas for you?

Anyway nice to be in touch with you and do let me know if I can help in anyway,

Sam xx


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## oscillate.wildly (May 19, 2013)

Hey Sam,

I am so glad that you got on so well with the dietitian! How great







everything seems so thin on the ground here and very hit and miss, so I am really chuffed for you. I agree with you that with IBS-C I find it really hard to work out what is making things bad, and even though I understand about soluble vs non-soluble fiber, the who fiber thing feels like a bit of a minefield, ha! I quite religiously have porridge (made with water) in the morning with a bit of milk, handful of cornflakes and a tsp of flax on top. It seems to me that whatever I eat I will end up looking 6 months gone afterwards - I wonder if this is just because I am constantly constipated and so getting full after a meal just makes my stomach stick out. And of course if I eat the wrong things (no idea what these are yet!) then I end up very very bloated and sore and with pain in the lower right hand side at the bottom of my tummy (once I mentioned a rumbling appendix to my doc and he practically wet himself and told me it was a load of bunkum). It is so great to have such an informative resource as the internet at our fingertips, but then again the wealth of conflicting information out there is confusing and you end up talking yourself into a brain tumour if you type in 'headache'! It would make a huge difference to my life if I could get this figured out. My boyfriend is very active and it is hard to keep up. Also the bloating makes me very down and self conscious. The only time in the past 2 years that I have had a flat tummy is when I got Giardia in Africa!! Too ill at the time to appreciate it, ha, so not a recommended cure for bloating (resulted in 3 weeks without a single BM!).

Yes I got my lactose test on the NHS - it took MONTHS to come through, I missed the first one as I was back in Nigeria by then (normally out there for 6 months/year for fieldwork but only one 2 month trip left in oct then finished, yay! completely trashed my health) so rescheduled this week and nearest appointment is early July. Patience is a virtue, as they say. If you want a test, I would certainly certainly push your GP for it. Even if it would mean going to a new GP. I find GPs very very hit and miss, both in terms of attitude and knowledge. Some tell me to get on with it, some throw antidepressants at me. I know they are not meant to be specialists and are just the first contact, and I also appreciate the pressures they are under from the NHS, so I understand when I see someone who I feel does not help me. But it is incredibly frustrating. The main consideration is where you could get this done, as I know that not many places will do them. I am having to travel some way. What I would recommend, and this would go for anyone needing a test, would be to ring nearby medical centers and ask them if they have the facilities or if they know anywhere else. If you are armed with the information when you see your GP, it is easier for them and more likely to happen.

I cannot tell you how thrilled I am that you have offered to scan the booklets! That would be SUCH a godsend for me, thank you so much. My email is [email protected] I hope it's not too much trouble for you to do. I tried to convince a dietitian to send them to be considering how long I will have to wait, but they all refused as they said you need guidance and supervision. I understand where they are coming from, but still that doesn't help. That is really kind of you and it would help me immensely. Although there are some very good resources online, there is lots of conflicting information, even between those who say they are the most up-to-date. Recipes too would be wonderful! My main concern is getting enough nutrition - I see the recommended intake of each group (e.g. fiber, protein, fats etc) and it looks IMPOSSIBLE to get this into me! I am quite restricted with meals and tend to eat the same things every day, very low fat (now trying cheese) with just a few safe meals with kind of the same ingredients just mixed up a bit! So my only worry is that by doing this I could end up eating something disagreeable each day, but thinking I am not, and then not be able to figure it out. So some help and the booklets will do wonders for that. My problem is that I am very up and down with my constipation - always a problem but sometimes worse, so I get to the end of my tether and take a ducolax and more movicol/laxido (I used to be on laxido, then last prescription was movicol. Active ingredients appear identical but movicol is a bit more gross. I hate the stuff! I pinch my nose when drinking it, heh) and this recently messed me up. So it is so hard to tell what is working regarding the diet. Mainly I also eat chicken/turkey, fish, potatoes, rice, quinoa, porridge, then green beans, courgette and R&Y peppers. I am going to try spelt bread this weekend (sooo excited!). I will let you know how that goes, it seems very easy and fool-proof. The flour is £2/kg but would make 2 big loafs (also pittas or rolls or wraps) which works out much cheaper than the gluten-free stuff, hopefully tastier and of course I love to bake and really excited about making bread (I usually end up with rock). It is wholemeal though but I wont go nuts.

It is very reassuring to hear that you have been able to stick to the diet on your own. It is not comforting to hear all the dietitians say 'you'll mess it up on your own' but then say 'but you're not going to get any help this side of summer'. I know they are worried that I will mess it up, give up and then not try again when/if I do finally get to see someone. But far from it - I am trying to be strict with myself to keep a good food and symptom diary and then I can work with that. I think it is making a difference anyway, and I feel like when I get more regular with sorting out my constipation and less up and down with life in general (just moved back up to Fife to carry on with the PhD) then it will be easier to see the true effects. My bad attacks so far were yesterday when I woke up in pain and went to the loo quite a lot throughout the day - I took one ducolax the night before so think it was that. Then last week I caved in and had 1 (ok, 2) choc ices because I was feeling better and wanted some comfort and then the next few days were really bad! I should get no sympathy for that









Anyway I am waffling.

Woohooooooo I am so excited about chocolate!!!!!!! I don't eat much but I have a little square every now and again throughout the day and it is my little treat that I like to have. I tried to not have it but I know there are packets in my bedside cabinet throbbing away in there and I am just 'a teeny bit wont hurt!'. I also miss garlic and onions SO MUCH. I am going to make some garlic oil - I usually don't cook with oil and everything is very low fat, so I sometimes wonder if this would contribute to my constipation. This would be a good way of getting some fat into me and also hopefully stop me losing too much weight. I am already quite thin and it seems to be hard to get the calories in with this diet (usually the other way around when eating normally!)

Sorry my reply is so long! I think it's because it's so nice to be able to talk to someone about this who really understands. Thank you so for helping







I really appreciate it! I will send the recipe for the spelt bread etc if it works out!

Emma


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## SamFODMAPs (May 27, 2013)

Hi Emma,

So sorry for the lack of a reply - it's been super busy in work. I saw your private message so am going to respond to this! It's no problem for me to send the booklets to you. Will message you now!
Sam


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