Crohns / ulcerative colitis sufferers

wingman said:
It's interesting to read this having read a post on the UC Reddit forum last night:

https://www.reddit.com/r/Ulcerative...ore_symptoms_since_i_went_on_a_low_carb_diet/

Genuine question - what diets did you try, and how long did you stick to them?

I've read many instances whereby low carb/keto, gluten free, fasting etc. can all help symptoms, but ultimately people are flakey (even when they know their food choices can do harm), so I rarely trust people when I hear things like 'well, yeah, I went gluten free for a week but I simply can't give up bread so I continued to have toast every morning, but otherwise, yeah, totally gluten free'.
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I've felt a lot better since moving towards a pseudo-paleo diet over a year ago. If i ever have gluten or even too many grains, I feel bloated and constipated. So effectively low carb, high protein, high fruit and veg and high fat works best for my digestion and therefore wellbeing. I have dairy every now and again as I don't feel it affects me but I'm looking into a2 milk atm since I read something about it recently. I've been slacking due to stressful personal events recently

Whilst I am at it, I am getting a private gut map done soon, with my nutritionist (with AIP specialism) doing an interpretation for me. Its gonna cost me over £400 but I'm hoping it will shed some light beyond what blood tests tell me. I am not stopping my meds though. The nutrition stuff is complimentary and my NHS consultant is aware, and sceptical, but if works for me!
 
I suspect you're going to end up just paying for a test after which they're going to offer that same AIP diet or some variation of it they've taken some course in order to promote. No doubt they can also waffle on a bit about the £400 for the test you've paid for. I guess, given you're already on that sort of diet then meh.. still it's your money.

AFAIK It's not a good idea to just restrict your diet with IBD unless there is good reason to do so - specific foods clearly causing issue or evidence based reasons.

Anyone can call themselves a nutritionist, it's the dietitians who give evidence based advice rather than promoting gimmicky stuff in return for cash and you can generally see dietitians for free too, plenty of IBD teams have specialist IBD Dietitians, it would probably be a better idea to see one of them, especially if you're keen on some restrictive diet.

https://thefoodtreatmentclinic.com/2019/01/21/autoimmune-protocol/
There is no evidence to support that the autoimmune protocol diet aids the prevention of autoimmune diseases. If after reading this, you decide to follow the diet anyway I would advise that you see a dietitian to prevent nutritional deficiencies whilst on the diet.
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I mean if you like this paleo stuff then it's your money, but it's worth highlighting that this stuff is pretty dubious/isn't well supported and dietitans rather than nutritionists, in particular IBD dietitians who work with your consultants, can be in the MDT meetings when your case is discussed etc.. are much better placed to give proper advice and avoid the nonsense.
 
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WantoN said:
Predominantly because whenever someone has found significant improvement in their symptoms with a change in diet or supplementation, dowie is there, ready to do his best crush their argument, vehemently. You've got to give it to him, the effort he puts in to prove you wrong is astounding.
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I think you misunderstand my intentions here completely, it's not to prove anyone wrong, it's an objection to dubious claims made without evidence... I can't necessarily claim something has no effect or is wrong, I can however ask whether there is decent evidence to support it and can point out the obvious fallacies that often occur when people promote stuff without evidence...
If you're going to make dodgy claims then expect a response, I'm not being rude about it but I'll certainly object to misinformation if/when it is posted and/or highlight additional things that might be relevant.

I appreciate that it's not at the level of someone with cancer being advised that a magical vitamin drink from a hospital in Mexico can cure it instead of chemo etc.. but the dubious nature of some claims can be rooted in similar dodgy thinking, often promoted by alternative medicine practitioners* - promoting things in a medical thread that aren't supported by evidence is dubious and deserves a reply/rebuttal. If you're not able to support your claims and/or don't like seeing a reply that highlights potential issues with them then perhaps it is best not to make them in an open forum where people can post a follow up question or highlight potential issues with a claim.

*for example AIP diets are often promoted by naturopathic "doctors" and nutritionists (granted not all nutritionists are alternative medicine practiioners, some are involved in clinical work within the NHS but really it's dietitians who are the professionals who offer serious advice here, specifically IBD Dietitians). I've not said there is nothing to them or that they don't work, I'm saying you need evidence that they do work (if they do) and/or better understanding about what parts work etc.. like there is a list of stuff to exculde but (supposing there is a beneficial effect demonstrated in future in a large trial) what if half the stuff to be secluded can be eaten and you're just needlessly restricting your diet.

Here is a blog post by a reformed nutritionist who used to promote fad diets/woo:

https://sciencebasedmedicine.org/i-used-to-be-a-holistic-nutritionist/
After years of self-diagnosis and preaching all my fad-diet escapades (for this, I greatly apologize to everyone I have alienated with my self-righteousness) I cannot express how deep of an appreciation I have for those on the front lines in the fight against pseudoscience, who attempt to mitigate the damage it does to real medicine. The influence of pseudoscience is not harmless and I have seen firsthand how it lures people away from evidence-based help in their times of need. I am fortunate enough that within my practice I had enough foresight to turn away individuals who required more assistance than I was capable of giving. But along the way I made many embarrassing and conjectural recommendations that cost myself, and others, far too much money and time.
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Here is an article by Ben Goldacre in the Guardian getting his pet cat registered as a certified Nutritionist!:

https://www.theguardian.com/science/2004/sep/30/badscience.research

In fact, I know you get a certificate, because I'm holding it in my hand right now. It's in the name of my cat, Henrietta. I got it in return for $60, and it's a particular honour since dear, sweet, little Hettie died about a year ago. So, coming in a bit cheaper than Gillian's non-accredited correspondence course PhD and Masters degrees (although she will have got a discount from "Clayton College of Natural Health" if she ordered them both at once), it looks as if all you need to be a certified member of the AANC is a name, an address, and a spare $60. You don't need to be human. You don't even need to be alive. No exam. No check-up on your qualifications. And no assessment of your practice. I guess that could be embarrassing for some of their certified professional members. Presumably, the diploma is there to certify that you have $60.

If you know anyone else who is showing off about being a Professional Certified Member of the AANC, I'd like to hear about it. The only one I can find so far is a man called Dr Bannock who presented Why Weight on Channel 4 and Fat Academy on Discovery. No, I'd never heard of him either. He says he is a "Member of the American Association of Nutrition Consultants (Board Certified Nutrition Consultant)". Glad you added that bit at the end, Dr Bannock. His website mentions his PhD in Nutritional Physiology, but he doesn't say where it's from; his website also features the odd photograph of a stethoscope, although to my disappointment, unlike Hettie, he's not gone as far as dressing up in it endearingly.
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There are plenty of "nutritionists" out there who will quite happily take your cash for diet advice, quite a few of them could very easily be giving you some dubious "woo" advice... Dietitians on the other hand are part of evidence based medicine.

I'm certainly not saying that diet has no role to play here, I'm simply saying there is plenty of questionable stuff out there and it's perhaps better to stick with evidence based approaches, not needlessly restrict food groups and consult a properly qualified dietitian.
 
WantoN said:
I don't bother posting in here much anymore. Predominantly because whenever someone has found significant improvement in their symptoms with a change in diet or supplementation, dowie is there, ready to do his best crush their argument, vehemently. You've got to give it to him, the effort he puts in to prove you wrong is astounding.
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The pursuit of wisdom attracts critics :)

Please don't waiver in your postings on this thread, it's an open forum which should encourage all personal good news and developments, not just the bad.
 
IBD affects everyone so individually that ways to get or keep things under control can be a very individual treatment. I have a friend with Chrons who can pretty much bar the odd small flare lead a normal life just by modifying his diet. He only takes mild meds I think Asacol and is pretty much in remission most of the time. I also have a friend who like me tried everything but nothing is helping and is currently awaiting surgery.

If diet helps bloody fantastic. If a certain med helps also fantastic. There is really nothing to loose by trying. Half the problem with this illness is finding something that works for each individual.

Don’t stop sharing what works the more that is shared the more understanding everyone can gain.
 
Well that isn’t completely true, firstly people have tended to make claims they can’t necessarily know to be true or support. Secondly re: nothing to lose, that’s not entirely correct, an overly restrictive diet isn’t necessarily a good thing if various things being restricted are needless and unsupported.

Main point though isn’t to try to shut down suggestions but just to highlight that this stuff can easily get into “woo” territory and that if you are going to pursue some diet then it’s perhaps best to do so with the guidance of a properly trained dietitian, specifically one that deals with IBD patients.

Outside of IBD you’ll find all sorts of advocates of various diets, keto, paleo, vegan etc... some quite fanatical and prone to hype about all the great things they’ve attributed to their diet.

The thing with IDB is that nutritional deficiencies can already be an issue thanks to inflammation, strictures and/or removal of some part of the gut via surgery. If you’re going to restrict aspects of diet then why not see a properly qualified professional who deals with IBD patients. Is that really a crazy suggestion instead of relying on the quacks or anecdotes.

I’m not saying don’t try anything, just highlighting that there are issues here and best to get proper professional advice if you are going to try.
 
I had "professional" advice for 20 years and they never suggested removing gluten for me.

Bottom line is that as individuals we're seldom given the time we need with the NHS, and even when we are, it's difficult to find a practitioner who would encourage various different techniques.

Besides, even registered dietitians rarely agree on the same thing. There is no one diet to fit all, as @MOOGLEYS post above. It's about finding what's right for you.

Call it "woo territory" all you like, it's really quite simple, you are what you eat. It's not hard to understand that a chronic bowel issue can benefit by changing what you put through it. If that's woo, then everything is.
 
Does fluid intake affect your condition for any of you guys?

Curious as I have IBS supposedly. I’m not 100% sure it is and it was a struggle to get even a tentative diagnosis.

Also, have any of you had a normal fecal calprotectin test and still ended up being confirmed as having UC / Crohn’s?
 
wingman said:
Call it "woo territory" all you like, it's really quite simple, you are what you eat. It's not hard to understand that a chronic bowel issue can benefit by changing what you put through it. If that's woo, then everything is.
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I’ve not claimed that diet isn’t important, you haven’t understood the point if that’s your take. My point was re: dubious claims.
 
Stu999 said:
Does fluid intake affect your condition for any of you guys?

Curious as I have IBS supposedly. I’m not 100% sure it is and it was a struggle to get even a tentative diagnosis.

Also, have any of you had a normal fecal calprotectin test and still ended up being confirmed as having UC / Crohn’s?
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You can have a normal fecal calprotectin test, that’s more likely going to show up inflammation when you’re symptomatic.

Granted if you’re experiencing symptoms you’d probably expect to see some indication then and if your GP or consultant has run blood tests and stool tests and found no evidence of inflammation then they might well have ruled out IBD.

Colonoscopy might not show anything either - I had one that was pretty clear though biopsy results then showed evidence of previous inflammation so they assumed mild Crohn’s and treated as such. Didn’t improve and was referred to a top Crohn’s specialist, he noted inflammation on an earlier blood test was high and would have indicated a bit more going on than had been seen in the colonoscopy, ordered an MRI and sure enough small bowel had plenty of strictures.

This is another reason why it’s good to avoid the woo merchants, BS vendors... I went to see an IBD dietitian and a diet plan was drawn up based on my actual condition. This is a diet professional who works in a clinical setting, is properly trained and gives evidence based advice. The dietary advice given to me for my condition goes against general healthy eating advice, I had to follow a low residue diet because of the strictures.

A nutritionist with dubious quals, who doesn’t work in a hospital or in conjunction with your specialists/clinicians, doesn’t have your records or scan results etc... isn’t anywhere near in the same position to offer that kind of advice and often they won’t have a clue about IBD nor pay much attention to evidence based medicine regardless... if they did they’d not be promoting “woo” in the first place or over complicating/needlessly restricting diets for their regular clients who have nothing wrong with them.
 
Definitely had numerous test that showed 0 CRP and low calprotectin whilst having UC. Had quite a few colonoscopies that showed no current inflammation but scar tissue suggesting previous inflammation.
 
DanTheMan said:
Definitely had numerous test that showed 0 CRP and low calprotectin whilst having UC. Had quite a few colonoscopies that showed no current inflammation but scar tissue suggesting previous inflammation.
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Thanks and also thanks to @dowie for your replies. Probably going to go back and moan at my GP soon. My current one seems ok and has actually ordered tests for me whereas previous ones (multiple!) treated me like I was making my symptoms up or imagining things.
 
Cheers, that’s interesting. Have actually been taking some extra vitamin D, or at least cod liver oil containing vitamin D (I think some of the individual vitamin D supplements themselves have a rather high amount though) partly because I did have low vitamin D in a blood test recently and partly because there is the possibility of it being linked to bad outcomes with Covid19, for example disproportionate deaths among BAME people even when controlling for comorbidities and other factors like occupation etc... etc...
 
I might be joining this illustrious club, been in hospital twice in the last month with stomach pains and vomiting for a total of 13 days (only 4 days of pain and vomiting, the other 9 have been wasted thanks to my hospital being utter **** and not having a gastro doctor come & see me), now I have to wait for my inflammation to go down and get the camera inside so they can decide if it's a tumour (they said not likely) or this horrible disease so I'm currently on roids for the inflammation and that low residue diet
 
Yikes, sorry to hear that... I guess if they've already confirmed the inflammation and have you on steroids then at least you're getting the sort of treatment you'd perhaps get initially to calm things down if you'd already got a diagnosis.

I had some unexplained vomiting a few times before I got a diagnosis too, including one time where I was feeling OK in the office in the morning, had taken a girl up for lunch in the bar/restaurant on the top floor, got about half way through my food and was like "erm, I'm really sorry but I just can't eat this, I need to go home, I feel like I'm going to vomit"... paid the bill, went down to my desk and quickly mumbled to my boss "really not well, am going home now"... somehow held it in and got all the way back to my flat. Other times I wasn't so lucky and needed to dash to the loo at work quickly etc... Only later found out it was due to stricturing etc.
 
Had it 3 times in 3 months, first time I weathered it out at home as it was just about manageable and with it being first time I thought nothing of it and put it down to a bug or something, then 3 weeks ago I ended up in A&E because the pain was too much and I'd been throwing up for a whole day, got discharged after 4 days when everything cleared up from the antibiotics they'd given me as they thought it was probably infection but wanted to get a camera done as outpatient so I was waiting on that until it flared up again last Tuesday with even worse pain and more violent vomit, managed to last until the evening before I was back in A&E, what a nightmare though, no beds available so had to wait 2 hours for a side room, then another 2 hours for pain relief, then had to wait until the next day for a room outside of A&E, then I had to wait 6 days for a Gastro doctor to see me because apparently they couldn't be ****** walking 5 minutes to the ward I was in to see me, so had to go through the PALS team to get something done and get me moved onto Gastro ward where I was finally seen and told as before, they need to get a camera so outpatient. Just got to hope the steroids do the job and help prevent any other flare up otherwise I'll be waiting even longer for the camera to finally get an answer to what's going on. Certainly would not wish it on even my worst enemy though, it's a horrendous experience with the pain and vomiting and doesn't help that our hospital is really terrible when it comes to patient care

One thing I'm stuck on with this diet though is wtf am I supposed to eat with my main meal, I usually either eat raw veg or salad, but I'm not allowed to eat either of them and there's no way I'm eating cooked veg :confused:
 
Oh are you vegetarian or vegan? I think that perhaps complicates things a bit when it comes to low residue diets! If/when you get a diagnosis then hopefully your IBD team has some dietitians too. I remember looking at yoga retreats a couple of years ago and being like "**** they're all vegetarian, WTF am I going to eat if I go there???" like even one in Greece, which was disappointing (I eat plenty of seafood for example) also turned into a bit of a sushi fanatic too, that's one healthy lunchtime meal that has never given me any trouble.

I guess that's one thing i'm grateful about re: London teaching hospitals - my A&E experience has been pretty decent there, had an issue with an obstruction and went to A&E, had a CT scan pretty quickly then up onto the gastro surgical ward, IV fluids and painkillers and one of those tubes down my nose (they're uncomfortable initially but they work really well to stop any further vomiting as they just drain everything in your stomach). If you have the option of going to an A&E at a big hospital a bit further out next time then might be worth it... my IBD team was at the same hospital too* so in addition to a gastro surgeon doing the regular morning rounds with her team one of the medical consultants popped along the next morning too to have a chat "He dowie, we've not met yet but I've seen your scans in MDT meetings over the years...".

*This makes it so much easier too re: accessing your history etc.. too. Basically you don't need to necessarily be under the nearest hospital or your local trust, if there is a bigger hospital with better facilities or some consultants with a good rep then could be worth getting referred by your GP there (it is an option that is available and not everyone knows about it).
 
dowie said:
Oh are you vegetarian or vegan? I think that perhaps complicates things a bit when it comes to low residue diets! If/when you get a diagnosis then hopefully your IBD team has some dietitians too. I remember looking at yoga retreats a couple of years ago and being like "**** they're all vegetarian, WTF am I going to eat if I go there???" like even one in Greece, which was disappointing (I eat plenty of seafood for example) also turned into a bit of a sushi fanatic too, that's one healthy lunchtime meal that has never given me any trouble.

I guess that's one thing i'm grateful about re: London teaching hospitals - my A&E experience has been pretty decent there, had an issue with an obstruction and went to A&E, had a CT scan pretty quickly then up onto the gastro surgical ward, IV fluids and painkillers and one of those tubes down my nose (they're uncomfortable initially but they work really well to stop any further vomiting as they just drain everything in your stomach). If you have the option of going to an A&E at a big hospital a bit further out next time then might be worth it... my IBD team was at the same hospital too* so in addition to a gastro surgeon doing the regular morning rounds with her team one of the medical consultants popped along the next morning too to have a chat "He dowie, we've not met yet but I've seen your scans in MDT meetings over the years...".

*This makes it so much easier too re: accessing your history etc.. too. Basically you don't need to necessarily be under the nearest hospital or your local trust, if there is a bigger hospital with better facilities or some consultants with a good rep then could be worth getting referred by your GP there (it is an option that is available and not everyone knows about it).
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I'm Pescatarian so it offers a little flexibility I'm okay with eggs too although I prefer to keep them at a minimum and milk is okay for coffee & breakfast, tried Almond milk but it's nasty in coffee lol I did see the IBD specialist who gave me the diet list and I guess it's just a generic one but the lack of salad and raw veg really makes trying to put together an actual meal pretty damn difficult, peeled cucumber is okay but I can't live off that as my only source of "greens" for the next few months :D Boiled tomatoes to get rid of the skin don't really sound appetising either but I guess I'll have no choice, really annoying that salads are off the menu though it's my side of choice for everything heh

Sushi is a good shout though, love the stuff

Once the camera & stuff is done I've definitely going to be asking the GP to refer me to another hospital, Aintree is close enough, have family work there and they say it's miles better than my local so will try get changed to there once the preliminary stuff is done
 
An interesting range of studies on diet if anyone wants to read them. Main article is here

At the end of the article there's an excellent list of additional / reference studies.

Diet has been transformative for me. No exclusion aside from triggers, predominantly focused on nutritious, anti-inflammatory foods, avoiding excessive fibre, and supplementation for things I can't eat enough of, or am deficient in (Turmeric, Boswella Resin Extract, and Vit D).
 
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