Newbie- Trying elemental/SCD route

[Dee Dorset]

Hello I am new to posting but have been reading the forum on the build up to my new treatment plan and really like it.

I was diagnosed with Crohn's about 13 years ago and was using budesonide (Spelling!?)if I had a flare and then relying on no gluten and dairy to keep me in remission or low to mod state. I have not wanted to go down the remicade or asathioprine route rightly or wrongly. Any how..... off roaded with the diet at Christmas and for a couple of months and had what I thought was a moderate flare, had a colonoscopy and found out that I have inflammation, severe in travers colon, despite not have many symptoms eg no D. just sore tummy, low energy and bad knee joints, Was told by Dr must stop ignoring it as have early stricturing signs in traverse colon but was allowed with the help of the in clinic dietician to try a diet route first. I requested and am being supported to take elemental 028 extra liquid cartons. Having read Dr Hunter's book I knew clinically they are as good as steroids in getting me into remission. I asked for 2 weeks then dietician has said 6-8 weeks!! :eek2: 2 weeks for remission then time for mucosal lining to heal. Then try a specialized diet. I am going to ask for SCD. I was dreading the drinks as they have a rep of being horrible, but I have to say I am finding them Ok, sort of a slightly odd milkshake thing. Freezing them as well to get frozen yoghurt thing going as well. I have asked for a calprotectin test to monitor progress as my inflammation does not always show in blood tests. Feel a bit odd not eating but so far so good. Anyone else doing something similar! :smile:

 

[hugh]

Have you read "Breaking the vicious cycle"?
It's the SCD book.
You should watch this video,
http://www.crohnsforum.com/showthread.php?t=48559
It is a gastroenterologist giving a lecture on the Paleo Diet (which is very similar to SCD).

SCD/Paleo/GAPS are 90% similar, and not that hard to follow so long as you can learn to cook a bit

 

[Dee Dorset]

Hi thanks for the links. I watched them, very interesting. My dietician wants me to do a Foodmap diet, I am planning to get the Breaking the Vicious Cycle book and will now look in to Paelo too. Think I might try and cobble together a version of SCD but leave out the Foodmap fruit and veg illegals and the Paelo suggestion of no dairy and pulses at least to start with. But will check with the dietician. A lot to take in but then I have 5 and half weeks before I even get to eat a nut or berry!:yrolleyes:

 

[hugh]

Good luck with your dietician,
Some are great but some are incredibly ignorant ideological and will insist that you eat your 7 serves a day of grain.

' Dr. Carolyn Dean , author of 'Death by Modern Medicine' offers three counter-strategies
- Be charming, courteous and pleasant, and always keep smiling as you stand your ground.
- Stay focused and don't allow name-calling or ridicule to get you off-track. Instead, gently but firmly guide the topic back to your original stance.
- Be persistent. Instead of getting defensive when your doctor or a drug company tells you you're nuts for wanting to try healthful eating and a better lifestyle instead of pills to cure what ails you, guide the conversation right back to your original plan – healthful living for preventive care.'


Many people find their own way of making SCD work,
I started with SCD and improved on it but it wasn't until i gave up yogurt that the D stopped.

 

[Dee Dorset]

Thanks that is great advice my GP is very sceptical and reluctant to support the prescribing of the elemental drinks as I am just "stalling" the inevitable taking of meds. The above strategy might help when I go back to get my second prescription.

My dietician is the best informed I have come across she knew about Dr Hunter and elemental induced remission. She seems keen on the fodmap diet but as this is more for IBS not crohn's I think she will be supportive of a SCD/paelo/fodmap combo! She is very evidence based and there is a lot of good feedback out there. I will try and use the charming/persistent statergy !

I posted in the elemental/elimination success thread after hearing all the good stories there. It really helps checking in with this forum. After 13 years finally embracing I have this disease and getting some support and getting to try the diet in a full on way instead of tinkering. :smile:

 

[KeithK28]

I read about the SCD diet and have researched "Breaking The Vicious Cycle" book too.

My opinion, having Crohn's for 9 years now, is that it is not diet related. I think we as sufferers look for answers, and diet seems to be an easy route to go down - but its not related. Sure, stuff like Spicy Foods etc don't help, but they irritate healthy people with healthy guts too, not just us Crohnies.

When my Crohns is inactive, I can eat anything and feel fine. When I have a flare, I avoid high-fibre, spicy foods and try to just generally eat easily digestable food such as soups, stews, rices, fish etc. Just to ease the guts job of breaking these down.

Good luck. Keep fighting, we're stronger than Crohns !!

 

[Beach]

I read about the SCD diet and have researched "Breaking The Vicious Cycle" book too.

My opinion, having Crohn's for 9 years now, is that it is not diet related. I think we as sufferers look for answers, and diet seems to be an easy route to go down - but its not related. Sure, stuff like Spicy Foods etc don't help, but they irritate healthy people with healthy guts too, not just us Crohnies.

When my Crohns is inactive, I can eat anything and feel fine. When I have a flare, I avoid high-fibre, spicy foods and try to just generally eat easily digestable food such as soups, stews, rices, fish etc. Just to ease the guts job of breaking these down.

Good luck. Keep fighting, we're stronger than Crohns !!

After reading about the SCD and Breaking the Vicious Cycle book, did you give the diets a try to see if they helped?

The diet ideas don't seen to help everyone sadly, but many are finding that they can help their IBD conditions greatly. A sight where many that follow one of the diets and report their findings can be seen at:

http://www.crohnsforum.com/forumdisplay.php?f=288

I saw in another thread that you are looking to teach English in China.

http://www.crohnsforum.com/showthread.php?t=50293

Best of luck. I hope it works out. I've not been to China before, but used to work with several Chinese in a previous job. In particular I became good friends from a fellow from the city of Dalian, in the Liaoning province. At one time he had been a dentist, and his wife was head nurse at a hospital. I guess in general can mention from what I was told, in the major cities medical care should be decent. Be sure to have funds of course, along with being generous with giving gifts.

The food might not be exactly what you are thinking. Most Chinese I worked with were greatly concerned with food poisoning, due to lax environmental laws and corruption. If my friends could afford it they would purchase foods grown from over seas. Western fast food places are also popular in China, such as KFC, Starbucks, McDonalds, etc. Frequently I would hear of dinning at a western fast food place, or buying foods at a WalMart for home.

Food inflation has been a problem of late too. I've heard several complaints about food prices continuing to rise.

I was happy to read the other day that Chinese officials are looking more seriously at cleaning up the environment. Hopfully this will translate into safer foods grown in China in the future.

"Dirty China Spending Big to Get Clean"

http://blogs.the-american-interest.com/wrm/2013/04/18/dirty-china-spending-big-to-get-clean/

 

[Dee Dorset]

I read about the SCD diet and have researched "Breaking The Vicious Cycle" book too.

My opinion, having Crohn's for 9 years now, is that it is not diet related. I think we as sufferers look for answers, and diet seems to be an easy route to go down - but its not related. Sure, stuff like Spicy Foods etc don't help, but they irritate healthy people with healthy guts too, not just us Crohnies.

When my Crohns is inactive, I can eat anything and feel fine. When I have a flare, I avoid high-fibre, spicy foods and try to just generally eat easily digestable food such as soups, stews, rices, fish etc. Just to ease the guts job of breaking these down.

Good luck. Keep fighting, we're stronger than Crohns !!

Hi I know what you mean about looking for answers but I reviewed the literature and even the conventional med community say it is rational to give it a try, so worth a go for me as I am reluctant to take the big drugs. I've given myself a year. There is a full scale trial just started results in 2015 on SCD. http://clinicaltrials.gov/ct2/show/NCT01749813 I am doing elemental/SCD under med supervision and will be having calprotectin tests so won't be able to kid myself, so will give it a whirl. Best of luck with your trip and your path with crohn's :smile:

 

[Dee Dorset]

Day 10 on elemental drinks all going well except yesterday drank two drinks quite fast and ended up with in the A & E with really bad stomach pains,they think it was gastritis/acid reflux or gall pain prob caused by drinks so today have been sipping them slowly diluted in water like I was told to :ybatty: The silver lining is I was googling elemental drinks and gall problems and found this recently published research on why they think the drinks bring you into remission, I knew about the starving of bad gut bacteria (that is why I want to try the SCD diet afterwards as it goes down similar route) but the stuff about protein causing allergic type reaction in a flare was news to me http://gut.bmj.com/content/34/9/1198.full.pdf

 

[Dee Dorset]

Ok so I made it! I have done 9 weeks on elemental in all. I got to 4 and half weeks feeling better but still with some pain in my gut and knees and low energy. then for two weeks felt GREAT, this must be what remission feels like no pain, a soft easy feeling in my body and energy and quiet tummy. Then I think I picked up a bug that everyone around me had and felt a bit crook again but slowly regaining ground and so I asked to stay on an extra week and week 9 I feel good and ready to take the plunge and eat food again. My doctor did manage to get a result back from my calprotectin poo test (I love having this glamorous disease :smile: I did this at the very beginning the reading was 256which is active crohn's so I have a control. (It took 4 weeks to get the result!) I am getting tested on Monday to see if the elemental put me in remission. I certainly have the green poo and bad breath which according to Dr Hunter means it is working. Like I said a glamorous disease!:yfaint:
Ideally I should wait to see if I am in remission (Dr Hunter in his book says no point in trying to eat if not in remission) before starting food but I do not have enough elemental to do that and feel like I really need to eat now. The drinks were fine but 9 weeks is enough for me. I am glad for the test as I do not get D. so hard to tell apart from energy pain and knees joints how I am doing. I can be in full flare and feel not so bad. So at least I will know. Food wise I am going to do a slow reintroduction of a SCD/Fodmap combined diet for 4 -6 weeks using elemental to support me, tapering it off slowly. I'll then get tested again with the calprotectin. if I am fairly stable I will reintroduce some of the fodmap foods testing each one. Any way that is the plan. My dietician would prefer me to have some rice or oats but I am holding out for the SCD diet as it mimics the drinks. She is very supportive and I will watch my calorie intake and nutrients to make sure I keep my weight stable. It is going to be quite restrictive but a chicken broth with carrots will taste like heaven for a bit!! God bless and best wishes to all those out there finding the way to health. All strength to you. Don't give up!

 

[Amy2]

9 weeks? Impressive! My son just did 6. Not exactly fun.

 

[Dee Dorset]

Hi Amy how did you son get on with it and the food reintroduction.
Ps Ist day of eating today who knew chicken and carrot soup could taste so good!

 

[helena101]

Good luck Dee with food introductions! Keep us posted.
I'm sure you have thought of this yourself, but don't try to eat a LOT of food in the first few days.
I was low on elemental when I transitioned to the lofflex diet, so I tried to get all my calories from food. Big mistake, I didn't feel good at all, and was back exclusively on elemental within 4 days... Since you have been just on the drinks for so long give yourself a few days to transition over exclusively to solids... Like I said, I'm sure you are probably doing this anyway. Enjoy your soup!
Xxx

 

[Dee Dorset]

Thanks Helena, I have extra supplies now and I will follow your advice, my dietician suggested the same, I have just dropped one drink today and a few rumblings on the soup so will take it slow. Plus a bit nervous trying to work out new recipes as I am following fodmaps/scd. Are you eat now and how are you doing?

 

[helena101]

It's been two years since I did EN. It's been a good two years crohn's-wise, I've been symptom free mostly and my last Calprotectin test was <15.
However I do still seem to need to take asacol, without it my Calprotectin shoots up (>1800!) and my BMs stop being formed. Also I haven't REALLY identified any trigger foods. I am now on a fairly wide diet, I eat most things, but still gluten free (my only grains are rice, oats, potatoes) and milk free (but I am having cheese and yoghurt, usually I make my own SCD yoghurt). I live in Greece, but I fly over to the UK 2-4 times a year to see Prof Hunter, I am going next week in fact.
It sounds like you are doing great though. You have been incredibly patient. My biggest mistake I think is that I really wanted life to return to "normal" as soon as possible. But this whole process takes a lot of patience....
If the asacol stops working for me I will certainly give EN and elimination diets another try, I feel I have learnt a ton from my first attempt. Please feel free to ask me if you have any questions.

 

[Amy2]

Hi Amy how did you son get on with it and the food reintroduction.
Ps Ist day of eating today who knew chicken and carrot soup could taste so good!

He was drinking 8 Peptamen a day, dropped 2 and ate those calories in food...a few days later, he went down to 4 Peptamen and added more food etc. I think he took about 10 days to completely transition back to food.

He's vegetarian, so mostly cooked carrots, veg broth, yogurt and eggs in the beginning and everything tasted wonderful to him!

 

[Dee Dorset]

Thanks for the advice I'm taking it slower than I would have, each day trying to add a couple of hundred calories using chicken, chicken broth, carrots, egg and melon so far. Melon not so good, going to try making the yoghurt but having trouble finding the right starter without bifidus bacteria the rest seems good
.

 

[helena101]

Can you get fage "total" Greek yoghurt? Supposedly this is ok to use as a starter according to the GAPS diet (which is a more "updated" version of SCD)....

 

[Dee Dorset]

:smile:Hi thanks for the advice yes I think we can, also found at my local health food store the Woodlands sheep yoghurt that has all the correct bugs in so going to give this a go with whole milk cows yoghurt. Getting the new yoghurt maker out! I have never spent so much time on my diet! but getting into it. All the best and thanks for your help.

 

[helena101]

Dee how are you getting on with your diet? Hope all is well...

 

[Dee Dorset]

Hi Helena thanks for looking in on me, sorry it has taken so long to reply. I am doing well but had some ups and downs. I don't know if you remember it took me 4.5 weeks to start feeling good on the drinks then after 2-3 weeks feeling really good, I got a bug and still at week 9 did not feel 100% but ran out of drinks and felt I needed to eat. I got my calprotectin test back and it showed 1600 so either showing up the bug or a full flare. It was so odd as really didn't feel like I was flaring. :eek2:Any way slowly switched from drinks to SCD/low FODMAP diet. I am nearly at the 2 months mark and have to say feel pretty good. Energy, no joint pain and occasionally get that soft feeling when you feel everything starting to feel good inside. I have had set backs, I felt ill when I had another bug/throat infection and around my period time but generally on the up. I had another gallstone attack, maybe from the diet change of eating SCD dairy and will prob have to have that out. I have an appointment with by specialist in 2 weeks I am going to ask for a calprotectin test at 3 months and then 6 months with a colonoscopy and see where I am at. I need to know if my gut is healing not just that I feel better. The diet is tough to follow you have to be committed only nearly gave up once but underneath I feel it is working so worth keeping it up. All the best to everyone on their path to health. My road is definitely a bumpy one but I am going with it!:eek2::smile:

 

[helena101]

Hi Dee,
Thanks for the update!
The diet route usually is not a smooth ride, so I wouldn't be discouraged yet.
When I was on the drinks I started feeling worse, I was on them for 4 weeks total, and my Calprotectin at that time was 995, so a bit better than yours but not very encouraging at all...
It was about 1-2 months after that (once on solid food) that my Calprotectin dropped to 150, and this gave me the courage to keep going...
So, its really a question now of finding the right combination of "safe" foods for you, that provide you with enough calories to sustain you, and gradually expand from there.
You are right that it is necessary to keep an eye on things and make sure you are healing on the inside. I did Calprotectin tests monthly, and since they have been good overall I am giving it a full 3 years for my next colonoscopy.
I really hope that taking out dairy sets things right, and that your next Calprotectin is better. How is your weight? Are you able to maintain it on SCD/low fodmap? Can you give an idea of what you are eating at the moment in an average day?

 

[Jane_MM]

Hi Dee, thanks for the update, have been looking out for one since reading your posts about your really impressive 9 weeks on drinks! Really pleased for you that you're feeling good now despite a few setbacks. Will be interested to hear if your insides are also getting better - hope they are, jane x

 

[Dee Dorset]

Hi thanks for the good wishes Helena and Jane, I ate some home made liver pate today!!! over came the childhood loathing, it actually tasted fine, not like liver! And how I hope to get my iron. It was so nice because my mum made it, that is the first thing in the 3 months someone has made me something to eat, because of the speciality diet I seem to do it myself, I have started asking for help and offering our recipes. My favourite new treat is a strawberry smoothie, I ripe banana, SCD yogurt and 3 strawberries (my dietician who is keen on Fodmaps says have to watch the fructose intake in one sitting) So delicious.
I try and remind myself there are up and downs to this thing. I def feel that each time the down is not so low, anyway committed to getting to the 3 month, then 6 month stage and assessing where I am then. Will also get my gal bladder out do not need those attacks again and maybe will help generally.
All the best in your own paths to health Lx

 

[Dee Dorset]

Hi here is my SCD diet that is working well for me now and has helped me keep a stable weight. My hospital dietician is reviewing it tomorrow so will let you know what she says. In the below list all the fruit and veggies are allowed on the Fodmaps list, the yoghurt is home made and SCD and left for 24 hours to get rid of the lactose and cheese is mature for same reason.

I hope to continue and have a calprotectin test at 3 months and 6 months and colonoscopy at 6-10 months. Will then review where I am at with diet versus other routes.

Breakfast

Pancake using either one banana and 2 eggs or I table spoon squash puree and 2 eggs, with fruit yoghurt little bit of honey

Lunch and dinner either 100g of chicken/turkey or salmon or white fish plus 3 veggies. sometimes as stew sometimes with pesto, some times with teaspoon of sugar free mayo

Snacks each day 3-4 ripe bananas, 2 x naked bars (35g) which are 60% dates 20% pecans 20%almonds, 35 gram cheese with a tomatoes, portion of fruit and yogurt, 1-2 kiwis, a pudding in evening of pureed pumpkin,egg and honey

I think upping the bananas has helped me keep the weight on with no stomach pain have a problem still with nut flour

This sounds pretty plain but can be great for example yesterday I had chicken stew with spinach and carrots and one tomatoe with horseradish and yoghurt and it was gourmet! For pudding I had the Elaine recipe for pumpkin pie with out the crust and yoghurt. Where there is a will for pudding there is a way!

Best wishes to all crohnnies and their own path to health, keep on keeping on xxxxxxxxx

 

[helena101]

Your diet actually sounds quite nice! I will try making the banana pancakes. How many months along are you now? It sounds as though you are doing really well. Did you end up getting your gallbladder removed?

 

[Dee Dorset]

Hi the banana pancakes are lovely, the butternut squash too (pecan bread web site for both recipes) especially with a little butter and honey, strawberries and youghurt. Once every week or so I dig about on line and re read the SCD books and look for new things to try to keep it interesting.

Still got my gall bladder but seeing my specialist tomorrow and will chat about it tomorrow. I hope he goes with my plan of 3 & 6 month calprotectin and colonoscopy I know after my first bad cal. test he is going to be suggesting a medication route but I think he will see I am relatively well and I want to give it more time.

How are you doing?

 

[helena101]

I'm doing well, thanks! My diet isn't SCD, as I include rice, potatoes and oats... I have to be quite careful with regards to how much fruit/veg/oats/nuts/fat I have each day, plus I am on asacol. The combination still seems to be holding strong, and I hope this lasts a loooooong time. I really hope your next test results reflect your progress as it genuinely sounds like you are on the right track.

 

[Dee Dorset]

Hi quick up date all going well passed the 3 month mark. Feel an underlying improvement in energy levels and much less joint pain and aches and pains. Feel still getting slight flares especially at 3 month mark as they warned and at menstruation time but flares are getting less bad and less often so slow healing process I hope. About to do a calprotectin test. Get pain in gut sometimes usually related to nut intake. Almonds are tricky pecan good. I have lost weight hard to keep calories up but still in Ok weight range for my height. Found it hard to get enough iron and hate the liver pate I made , but discovered something called iron water which is gentle on tummy and pregnant women. All the best to everyone :hug:

 

[Jane_MM]

Hi Dee, that's great to hear you're feeling improvement, and well done for sticking to your diet. Hope the calproctectin test shows you're doing well too. Are you still having any of the drinks you were on before, for extra nutrition and calories if you're finding those tricky just through eating? Or are they not allowed for SCD or Fodmap reasons? I'm now 3 1/2 weeks post resection surgery, and still wondering whether and what diet to try. I do like my fortijuce drinks though! Anyway, really hope you keep getting better.

 

[helena101]

Hi Dee, just wondering how you are getting on? How was your Calprotectin result? I hope that you are still having success on SCD.

 

[Dee Dorset]

HI Jane sorry not to have replied sooner. Hope you have got your self on a good path and it is bringing you health.

I have seen steady progress over the 7 months and hope at 12 months to have some real healing. Symptom wise I am much better and feel even though I have dips I am on a upward path, but waiting on colonoscopy to see if bowl lining is healing on this diet or not. My calprotectin results have been abnormal so jury is out as to where I am really at. If the colonoscopy shows inflammation at 12 months I will reconsider meds because of risk of scarring, not on any at mo with reluctant agreement of doctor. There is a big clinical trial in US on SCD results in 2015. I do have a dietician and she has been very helpful telling me to watch my iron and calcium. Also SCD book breaking the vicious circle recommends some supplements, I now take iron supplements (iron water that pregnant mothers take as it is very gentle on your system iron tablets can inflame the dr told me, calcium, b vitamins and cold liver oil and vit D and biotin. Feel they have really helped

I don't have any drinks I think they have a sugar in them not SCD legal and the diet is supposed to mimic the drinks but without these complex sugars that don't break down fully in small gut (could be wrong!) I did drinks for two weeks felt amazing caught a bug and stayed on them 9 weeks but never really got back to the 2 week feel good place. Prob would not stay on so long next time I think the sugar in them did have a detrimental effect in end.

I have stuck to the diet SCD/fodmaps combo 100% really. Only introducing a few fodmaps foods which are SCD ok after 6 months and very cautiously like half an apple. Going slowing with the diet and being cautious and noting reactions really helps me. For example it took me ages to be able to eat any nut flours and now my sister is making me coconut flour cakes. 1 is Ok, 2 is not ...belly ache. Plus date and nut naked bars 2 ok 3 prob not gut ache. But so hard to resist! Also think I have too much honey and fruit giving me some candida issues.

It is not easy & some days you are not totally sure it is working but def worth a try my energy is up, bowel movements good and pain decreasing and no red spots on my legs or big joint problems that use to signify a flare for me so as long as I can keep the honey & cakes in check feeling pretty hopeful. All the very best wishes to you Dee
PS Pecan bread web site is great at the begining

 

[Dee Dorset]

Hi Dee, just wondering how you are getting on? How was your Calprotectin result? I hope that you are still having success on SCD.

Hi Helena sorry not to have replied sooner, had a calprotectin test last month and got an abnormal result going to my GP Wednesday to find out the score. Symptom wise feel steady improvement so bit disappointed going to keep going on SCD until 12 months though and will have a colonoscopy soon (hurrah! love those:yfaint Also scheduled to have gall stone out soon. So much fun all at once! The pre op doc said I have oral thrush/candida I wondered if this could throw the calprotectin, any ideas or experience with that and how to get rid of it? How you doing? best wishes
Dee

 

[helena101]

Hi Dee,
Good to hear that you are feeling so much better. Its understandable that you are disappointed at the Calprotectin result, but you are right to be patient. I wonder just how "abnormal" it is... Numbers below 1000, while obviously not great, could still indicate that things are improving, which is the most important thing. Different labs have a different upper limit, some measure only up to 600, others to 1,800, others up to 3,400 or so.... Having spoken with Prof Hunter about it and with another patient of his, I think that numbers around 1,000 are not great, but not cause for despair either, and possibly more patience and tweaking is necessary.
Re the candida, I haven't had problems with that and dont know what to suggest. Are you getting any probiotics (fermented foods, SCD yoghurt, or even probiotics in pill form)?
Best of luck in your continued efforts!

 

[Lady Organic]

Hi Dee,

please update your thread I am highly interested in your story. Congratulation for your great determination :smile::smile: Im big on nutrition too and make extreme efforts. I am doing EN right now day 6. my crohns is in remission but I now have crohns related arthritis since a year in hands n wrists and im trying EN for it.

what is the result of your colonoscopy and calprotectine test?

hope you are well,
LO

 

[Dee Dorset]

Hi thanks for the support. I had a calprotectin test result it was 650 which I was pretty pleased with still not in remission but much less than the last one. I have not had a colonoscopy yet appointment not come through. Been feeling pretty good since passing the six month mark and lately really good pretty sure I am healing, but then wham - ate out for breakfast and ordered scrambled egg did not check and pretty sure there was milk or cream in and have real belly ache and v bloated and wind since! At least I know milk is def bad for me. I was so annoyed I didn't check as I have been so strict like you have to be. Any way couple of days later settling down. How are you getting on?

 

[Dee Dorset]

Hi Dee,
Good to hear that you are feeling so much better. Its understandable that you are disappointed at the Calprotectin result, but you are right to be patient. I wonder just how "abnormal" it is... Numbers below 1000, while obviously not great, could still indicate that things are improving, which is the most important thing. Different labs have a different upper limit, some measure only up to 600, others to 1,800, others up to 3,400 or so.... Having spoken with Prof Hunter about it and with another patient of his, I think that numbers around 1,000 are not great, but not cause for despair either, and possibly more patience and tweaking is necessary.
Re the candida, I haven't had problems with that and dont know what to suggest. Are you getting any probiotics (fermented foods, SCD yoghurt, or even probiotics in pill form)?
Best of luck in your continued efforts!

Thanks Helena that is really encouraging and useful info my result was 650 so in the right direction and I was feeling really good (until accidently ate some milk :ybatty: but slowly on mend. I think you right tweaking is the key, I am eating the SCD yoghurt. When you mention fermented foods do you mean like sauerkraut pickled cabbage type food? Hope you are well.
Lorna

 

[helena101]

Hi Dee,
Thanks for updating! Will you be doing another calprotectin in a few months? If you are tweaking the diet it might be useful to do it often, and see if any changes in the diet affect your calprotectin levels. Or it could just be a question of you needing more time for the numbers to drop.
About the fermented foods, yes I mean the scd yoghurt and sauerkraut etc. I am also having the yoghurt, but to be honest the fermented vegetables just seem like WAY too much trouble for me. But you could try for a month and see if it makes any difference with the oral candida. I think Gaps likes you to take a probiotic in pill form, as far as I know Professor Hunter sometimes recommends them, but sometimes not (in my case he only wants me to take them if I need to take antibiotics). He recommended Lamberts probioguard, gaps recommends biokult. Again, it could be something worth trying to see if it makes a difference with the candida and to see how your tum reacts... I would definitely start with a low dose and slowly increase, as many do not tolerate probiotics at all well.

 

[helena101]

Hi Dee, you must be at or near the 9 month mark now? Hope you are still doing well... I'd love to hear an update on your progress!
I'm thinking of giving scd a try myself soon, my success on Hunter's diet is limited, in that I still need some medication, and sometimes I have symptoms that I can't really attribute to any change in my diet...
Are you including scd-legal cheese in your diet yet? Hope you are feeling well!

 

[Dee Dorset]

Hi a quick up date year and half into SCD and to sum it up felt better symptomatically less pain and more energy and less joint pain but would say not enough on own as have low level problems most of time and periodic flares. Sometimes explainable eg. was told to take antibiotics for something un related and they caused a big flare but if honest have not achieved full remission.

Specialist is saying if I don't get inflammation under control even if low level long term not good for eg bowel cancer / strictures etc. so having a think about taking the meds I wanted to avoid while cont. with the diet. I know SCD says 2 years before healing but I am thinking I may have to cont. with diet and take meds for a while and see if this will push me into full remission.

Also really hard to keep on weight and have a balanced diet SCD can end up way over recommended protein levels and this worries me. Have stayed on diet 100% but now wondering about staying 100% Advantage of being on such a strict diet it is really obvious what works and what doesn't eg onions and grapes big reactions. tempted to trial my tolerance to rice or potatoes in a small way but have not so far. the Fodmaps diet has been a great guide for what has been clinically trialled for IBS.
I am taking a second opinion and having tests and consultations over next month.
God bless all chronnies on what ever is your journey and all the best in getting to a well place. Lorna

 

[helena101]

Hi Lorna, thanks so much for updating, I think it's so helpful to us all. I'm sorry you haven't reached full remission on the scd.
I have been following Prof Hunters elimination and lofflex diets, and have always been curious about scd. But, like you, I think there are some problems with scd: too much meat, and too difficult to maintain one's weight. The only way to keep the calories up is to eat lots of fat, nuts, yoghurt, and plenty of fruit and veg, all of which can be problematic for crohnies. So I do like the lofflex diet in that it excludes all those things (or limits the amounts as far as fruit and veg are concerned), plus it excludes high FODMAP foods such as onions, wheat etc, but includes rice and potatoes so that it's possible to keep the weight on.
I hope your tests and consultations go well. Wishing you the best of luck and continued healing.

 

[Dee Dorset]

Thanks Helena so lovely to get your support, I am trying not to feel really down but it is hitting me quite hard. I have read on the forum others describe their disappointment at a diet route not being enough as it means meds. But if that is the safest routes I'll do it.

There are results due on a clinical trail of SCD in 2015. I notice too that smaller successful trials have started on meds to induce remission and then trying to maintain it on a diet so perhaps that is needed at the beginning. Agree with you on the problem with SCD and too much protein or tough foods the hospital dietician warned this can create kidney problems. I can't eat lots of fats as I have a gall stone!

I have managed well on SCD yoghurt and hard cheese, did not realise by making yoghurt brewed 24 hours and hard cheddar means most of the lactose is gone. Anyway will see here I am over next few weeks. Trying to feel acceptance and keep some hope going.
best wishes
Lorna

 

[dave13]

Hi Lorna

I've been on the SCD for four months.I had a resection 10 months ago.Three months ago I had a SBFT and there was no sign of inflammation and the resection looked healthy.I do have fistulas and started Remicade infusions six weeks ago.

I like the way I feel on the SCD.I seem to do fine with the amount of nuts,fruit and veg we eat on the SCD.I make my own yogurt each week.I find it very time consuming though.We pretty much make everything we eat.

I'm slowly gaining more recipes and becoming more efficient in the kitchen.

 

[Lady Organic]

Im not in agreement with the animal milk yoghurt in SDC diet. eventhough the lactose is gone, the milk protein remains and it would be pro-inflammatory. The composition of cow's milk is not intented for humans. For probiotics, I use VSL-3 or Bio-K, free of milk protein. if you can tolerate raw living foods like sprouts or chaucrates, this also repopulates the colon with good bacteria. I also always soak my raw nuts before eating them.

 

[helena101]

Hi Lorna, i know how devastating it is after such a huge effort to realise that you will need meds after all... And the scd for 18 months is a huge effort...
I started my dietary attempts with Professor Hunter 3 years ago, and I was already on asacol at the time. After spending about 18 months testing and retesting foods, and trying twice to come off the asacol and flaring, I had to accept the fact that I would need to continue the medication. I was heart-broken. But now that another 18 months have passed and I am still well (bar some very minor ups and downs recently because I just had a baby) and I am so grateful that I am only on this medication... So it is very possible that with a course of steroids, and perhaps a mild med like mesalazine you will be able to take care of the remaining inflammation... Have you had any more calprotectin tests throughout this period? I remember we had talked about your previous one which was 600... Have the numbers continued to be around there? What sort of low level issues have you been having?
Again thank you so much for updating.

 

[baistuff]

I really hope everyone reads this thread and now understands why docs do not jump on the fad diet bandwagon. Keep in mind that this diet evolved from a PEDIATRIC case of UC. Can we really extrapolate the anecdote of a 5 year old with UC to an adult with CD for over a decade?

Can you imagine if a Doc suggested an expensive, socially isolating, unproven, untested theory for 18 months and then a patient didn't improve? Or what if someone had a medical complication from the ketosis? at least in the US, that doc would be seeing a lot of his lawyer.

There is no question diet is extremely important in the management of IBD, and needs rigorous research. But with disease location, severity, symptomatology,co-morbidities, age, envirorment, meds etc.. the one thing I am willing to go out on limb with saying is that I don't think we will EVER find a one size fits all diet.

To Dee- my sincerest wishes for rapid healing and control. Please make decisions with your care team (doc, dietician etc..) based on YOUR individual case, not based something you read in book written by someone who knows nothing about YOU.

M.D.

 

[Dee Dorset]

WOW MD thanks for the sensitivity in what is a really difficult time for me. :sign0085:

Neither of my specialists thought it was irrational to try this although unlikely to succeed, esp as my disease is not confined to the small bowel and I see now it was unwise for me not to take medicine at the same time. I realise now that the diet route can be a form of denial or a way to avoid the challenging path of meds

But the feeds are a successful as steroids in inducing remission the diet mimic the feeds but as you say there is no clinical evidence for maintaining remission although a clinical trail in the US reporting in 2015. I feel better on the diet though not cured and will cont. in a modified form using the clinically trialled fodmap diet to guide me into eating some complex carbs. But it has definitely helped with IBS type symptoms which chronnies can get on top, I have less pain and joint pain and more energy. Plus a lot of research is now going in the direction the diet aims at in trying to get the good /bad bug balance right.

I have been as honest as I can, and been evidence based in my approach and did it in partnership with a hospital dietician and consider I have taken some positives although the diet did not work for me.

Right now this thread is an important support for me so please lets be gentle and kind with one another, if you want a vigorous debate or to state your opinion really strongly about this subject please start your own thread and I'll sign post people to it from here. I realise it is a serious subject and my approach of remaining unmedicated uptll controversial and prob un wise but there were personal reasons for this
All the best to everyone on their journey.

Lorna

 

[baistuff]

Fair enough. My apologies if you felt I was attacking you. I most certainly was not. I was attacking those who constantly berate their MD's for not pushing unproven diets and those who think because something may have worked for them it should be medical gospel, that is all.

I now do see and agree that this particular thread where you come for support is not the best place for a rigorous debate about SCD and for that I do apologize.

Having lurked on this site for some time and reading a ton of posts which are often are not completely based on medical fact, or often misrepresent the dedication, approach, and passion of the medical community when it comes to IBD, I felt joining and giving a unique perspective would be helpful, even if at that meant it may encroach on some well established patient beliefs. I work in a large inner city east coast (US) hospital system where the patients, docs and staff for better or for worse all have an edge to our game (myself included.) If that comes across as harsh or unsupportive, it certainly is not meant to any individual. However, I believe in absolute honesty, and never hide what I believe from patients, students and residents, thousands of whom have come to me for care, education, and guidance over the years. I've never believed in sugarcoating, it doesn't do anyone any good in the long term.

Yes, you are correct and I again apologize for soapboxing a support thread. However, in general, I thought I was providing a valuable voice as a doc with Crohn's. If this perspective in general may cause some distress, well than that of course is the last thing I would want to do.

I wish everyone well in their journey thourgh IBD. Nobody, whether mild or severe, deserves this disease and I wish everyone rapid healing and control.

Take care,

M.D.

 

[Dee Dorset]

Thanks for your reply post and the perspective of a doctor. I hope you can see from my posts I do not represent the kind of approach to diet you object to. And speaking the truth is good but there is nothing wrong with a bit of empathy to go with it from doctor and patient. I know from a patient it's hard if you do not feel heard or understood, not being listened too does not help a patient work through all the road blocks they may feel about meds that can take quite a bit of courage to take. Plus a patient can know their body very well and diet for me is not be the whole answer but in my experience has helped improved my quality of life probably by a third. I am practising listening to my doctor more carefully and am really hugely impressed with my new consultant who listens to my endless questions and gives a rational explanation I can trust, knows all the latest research and does not discount new approaches if the evidence comes in. So we need you all very much. You sound like a very passionate and committed Doctor, thank you for your dedication.:heart::heart:
All the very best
Lorna

 

[Lady Organic]

Few trials are going on exploring diet and IBD. Researchers and universities wouldnt start these without some important pushing from GI who believe in them. There is the SCD and also the IBD AID which has published the diet recommendations in an article. Ive just heard today of another team of GI here in Québec (from a representative of Crohns and Colitis Canada) who are already doing nutritional clinics with a food approach, but I dont know yet what their diet is about. Right now they would be seeing the most difficult cases and the outcomes are positive, according to the rep.There is also Dr. John Hunter, GI dr. SHINYA (Director of gastro-surgery department in a NY hospital) (diet Im fallowing), and dr Seignalet (diet Im fallowing) who have also published books and worked with lots of people on food approach with positive results, but who have not published in journals. Dr. Shinya diagnosed his own son with UC when he was 2. her young daughter suffered from eczema. Both of them stopped milk and they came in remission. Some patients do get full remission with diet, some partial, some no help at all. there is no harm in trying a different nutrition for a while, its definately less risky than trying any other approach. I definately dont get full remission now with food, Im thinking maybe partial, I hope, but I do have to rely on powefull meds, sadly. Im not giving up my nutrional approach because I am 100% certain it will pay me good in the future. Its definately safer than eating milk-meat junk processed fast food without vegetables like I was before and where nobody worried about my nutritional state...

 

[Lady Organic]

Dee, have you tried supplementing with curcuminoid extract? I do, tried it for my arthritis. the first morning after my first pill, the stiffeness was reduced by 50%! i was laughing in my bed, waking up and coulndt believe it. Curcuminoid extract has been studied for many different inflammatory conditions and cancers with very positive results. Maybe something you can try. I was eating tumeric powder in large amount for over a year without noticable impact. When I got more into the reading of the studies regarding the subject I understood, the experiement were always using extract, not the powder form. I now belive the powder form is useless, its prolly completly dead. Fresh ok great, but really difficult to get in America and really messy preparing. Tumeric root is considered to be one of the no1 anti-inflammatory vegetal by epidemiologists who study life style related cancers.

 

[dave13]

Hi,fresh turmeric root should be available at a local health food store.I use it also and that is where I get it.

 

[BlakeTheSnake]

I started the SCD diet 21 days ago and I couldn't be any happier. Literally the second day on the diet I had a formed BM. It was the first formed and non painful BM in months. And since I started I have not had any D! I am really strict with the diet and did countless research on the best way to phase my foods. Best way to figure out how to phase your foods is to do an allergy test and start out with the foods you don't have a reaction to. Then from there check phenol ratings and start with the lower ones and move your way up. Take 3-4 days of eating a particular food to see if you have a reaction. If you do not, then move on to the next food. It's as easy as that and it give you a new outlook on food.

 

[helena101]

Hi BlakeTheSnake, so glad you are having such great results with scd. What foods have you added so far? Best of luck, I hope you continue to do well on the diet.

 

[BlakeTheSnake]

Meats: Chicken, beef, turkey, pork, bison, lamb & fish. (no dairy)
I try and rotate my meats as much as possible throughout the week and

Vegetables: Carrots (pureed), butternut & acorn squash (pureed), zucchini (pureed), minced garlic, chopped mushroom & spinach.

Fruits: Pear sauce, applesauce, grape juice gelatin & banana.

Nuts: Coconut oi, olive oil & pecan butter.

Other: Himalayan sea salt, pepper & bone broth.

I start eating green beans today

 

[Lady Organic]

Hi,fresh turmeric root should be available at a local health food store.I use it also and that is where I get it.

what a coincidence, i went to my grocery store today and they now have fresh tumeric, Im so happy. They told me they'll have it on a regular basis from now on!:dusty: It was almost impossible to find some in Montreal before.I bought a bunch. Im use my old mixer when I have tumeric because it stains real bad. I threw 3 inches in my carrot-ginger soup. adding a oil counpoud and pepper would enhance curcuminoid biodisponibility.

 

[Lady Organic]

Blake, you are so lucky food approach is working like a miracle for you! You are blessed!

Does SCD recommends eating nuts raw and soaked? I do, its a form of germination and it would reduce/destroy enzyme inhibitors in nuts.

 

[BlakeTheSnake]

In my case should not be eating nuts raw just yet. Maybe in a couple months when my gut can tolerate harder things. I soak, dry and toast then before putting nuts in the processor.

 

[dave13]

Does SCD recommends eating nuts raw and soaked? I do, its a form of germination and it would reduce/destroy enzyme inhibitors in nuts.

I eat them both ways,is one way better for us? Soaking destroys/reduces the enzyme inhibitors? I'm new to this.

Turmeric does leave a lovely yellow color on cutting boards and pretty much everything.