SCD vs Prof. Hunter: Crohn's can "die off"??

[Sea_Star]

Hey everyone. I was browsing the forum and came across this thread: http://www.crohnsforum.com/showthread.php?t=54695
where someone stated Dr. Hunter has done research stating an elemental diet and subsequent diet could cause the disease to "burn out" after several years of controlling it with diet (per his research). This is his book: http://www.barnesandnoble.com/w/inf...ssor-john-hunter/1111616450?ean=9780091935085

So in any of your experiences, what's the better route? SCD or his? Are they pretty much the same?

It's not fair there are so many theories, but at the same time it IS!

 

[Mattie]

I am a current patient of Professor Hunter and am following his regime. I went on an elemental diet for three weeks in 2009 when first diagnosed, followed by an elimination diet for four months. It is only by following an elimination diet, where foods are tested one at a time that you can work out which foods you as an individual are sensitive to. I now know which foods I need to avoid, and as long as I avoid them, I remain perfectly well. I take a low maintenance dose of asacol each day, but that is all.

The problem with blindly following an SCD or Paleo diet is that you don't know which foods you are sensitive to and may be cutting out foods you don't need to, or keeping in foods which you shouldn't eat. The SCD diet would only be partially successful for me as I know I cannot eat dairy in any form including yogurt.

I don't say this is an easy way. It requires total commitment and can't be done half heartedly.

And you are right when you say that from the Professor's experience over 30 plus years of treating Crohns patients through diet, the disease does burn itself out after 6 - 10 years. His books on the subject are well worth reading.

 

[DJW]

I read Dr Hunter's book. Its very informative. However, I didn't agree with his "die out/burn out" theory. I went 20 years in remission with no meds. In theory it burned out. But I'm now in a flare and have been for 2.5 years. So it really didn't die out. I'm curious how many years you need to go to consider it dead.

 

[Sea_Star]

I read Dr Hunter's book. Its very informative. However, I didn't agree with his "die out/burn out" theory. I went 20 years in remission with no meds. In theory it burned out. But I'm now in a flare and have been for 2.5 years. So it really didn't die out. I'm curious how many years you need to go to consider it dead.

Wow, that's a long time for a flare I hope you're at least feeling some improvement!

What put you into remission, if you don't mind me asking? Also, were you on any diet? I wonder if it "burns out" only through a particular diet..

 

[Sea_Star]

I am a current patient of Professor Hunter and am following his regime. I went on an elemental diet for three weeks in 2009 when first diagnosed, followed by an elimination diet for four months. It is only by following an elimination diet, where foods are tested one at a time that you can work out which foods you as an individual are sensitive to. I now know which foods I need to avoid, and as long as I avoid them, I remain perfectly well. I take a low maintenance dose of asacol each day, but that is all.

The problem with blindly following an SCD or Paleo diet is that you don't know which foods you are sensitive to and may be cutting out foods you don't need to, or keeping in foods which you shouldn't eat. The SCD diet would only be partially successful for me as I know I cannot eat dairy in any form including yogurt.

I don't say this is an easy way. It requires total commitment and can't be done half heartedly.

And you are right when you say that from the Professor's experience over 30 plus years of treating Crohns patients through diet, the disease does burn itself out after 6 - 10 years. His books on the subject are well worth reading.

That's awesome you are his patient!! You must be doing well, I hope!
See that's what I'm confused about; SCD seems to be elimination-like, slowly introducing new foods to check reactions right? (Which is difficult for me, as I'm usually asymptomatic, except when I'm in a flare where I have abdominal pain, not much else). Actually, the 3rd day I was on the SCD intro, I "caved" and had pasta...immediately I had abdominal pain which was strange! I kept eating it, and it was fine after. But usually, no foods bother me!

So the LOFFLEX/Enteral Diet...does that "heal" the gut? I can't figure out the difference between SCD and Lofflex/Enteral!

You can't eat dairy at all? I wonder if a 1 time reaction is legitimate proof....especially when you're in a flare. But in remission, can you eat it?

 

[DJW]

Wow, that's a long time for a flare I hope you're at least feeling some improvement!

What put you into remission, if you don't mind me asking? Also, were you on any diet? I wonder if it "burns out" only through a particular diet..

I just avoided the foods that bothered me. I don't see there being a difference between remission by avoiding problem foods and remission based on a specific diet. 20 years is great no matter how I look at it. His books are very good.

The burn out part was the only thing I questioned. Patients with 10-20 years remission is good but no garentee it won't return. If Ihad died before another flare people could hhave said it burned out. Debatable.

P.s. There wasn't much that bothered me when not flaring.

 

[Mattie]

I think one of the differences between SCD and elemental diet followed by elimination diet is that the latter is designed to be specific to you and your body whereas the SCD diet seems to be a one size fits all approach. I am not decrying the SCD diet, I think it's a good approach. But I know from experience that SCD allows some foods which I would have problems with. I am intolerant to wheat , corn, oats, dairy, soy, citrus fruits, tea and coffee!

I know if I eat any of these I will flare and have diarrhoea, so I don't eat them. I reacted to them on my elimination diet and the reaction was quite clear and severe and have reacted to them if I have inadvertently eaten them since.

Lofflex (Low Fat, Fibre Limited, Exclusion diet) was designed by Addenbrokes. It is a range of foods which are known not to cause problems in most of the people who had tested them. So patients who had followed an elemental diet for two to three weeks could go from that to Lofflex and continue testing individual foods thereafter. Unfortunately I reacted to something in the Lofflex diet so had to go the long way round and follow an exclusion (elimination) diet which tests foods individually.

 

[sid]

I personally belive that the way to leading a normal life without meds is very much possible with diet changes...you jus need to avoid certain food and have foods that help your gut. I dont know about the burning out part, but if remission remains there forever with changes in your diet, then I dont think there is any harm in going for the diet changes. so I have full beief on Dr Hunter's theory.

 

[my little penguin]

If diet works for you that wonderful.
Unfortunately diet alone is not enough for the large majority of people with crohn's.
Regardless of treatment plan ( diet meds etc...) anyone with crohn's should regularly monitored by a Gi for any silent disease progression .

 

[Lady Organic]

I am a current patient of Professor Hunter and am following his regime. I went on an elemental diet for three weeks in 2009 when first diagnosed, followed by an elimination diet for four months. It is only by following an elimination diet, where foods are tested one at a time that you can work out which foods you as an individual are sensitive to. I now know which foods I need to avoid, and as long as I avoid them, I remain perfectly well. I take a low maintenance dose of asacol each day, but that is all.

The problem with blindly following an SCD or Paleo diet is that you don't know which foods you are sensitive to and may be cutting out foods you don't need to, or keeping in foods which you shouldn't eat. The SCD diet would only be partially successful for me as I know I cannot eat dairy in any form including yogurt.

I don't say this is an easy way. It requires total commitment and can't be done half heartedly.

And you are right when you say that from the Professor's experience over 30 plus years of treating Crohns patients through diet, the disease does burn itself out after 6 - 10 years. His books on the subject are well worth reading.

Hi Mattie,

you are so lucky elemental and exclusion diet are working for you. You are still in full remission now? Oh, but I see you take asacol, may I ask why? The diet was not keeping you perfectly in remission? Where is your CD located? I have primarily colonic CD. I have read Dr. Hunter's book too. I tried elemental diet for 3 weeks in february to control a new arthritis related to my CD (my Cd was and is in remission though). I fallowed that 3 weeks by a 1 week water only fast and that whole month didnt do much difference in my condition unfortunately. After the fast it was a few days I was only having mix of EN and vegetable juice and it took a while before I reintroduced most of my diet which was already very strict. EN and fasting have been studied and help arthritis too.

You took Elemental E028? here in canada, we have only access to Vivonex. I m strongly against GMO as we now know they are cancerogenic in rats and Vivonex had corn starch GMO inside which was such a conflict for me while taking it. I definately want to give a second chance to Elemental diet especially if my crohns relapse one day, but with E028, the one sold in England and that Dr Hunter uses. I wish I can find a way to get it here. I will inquire...

 

[Mattie]

Hi Lady Organic

Yes, I still follow an elimination diet under the care of Professor Hunter. Just entering my sixth year now. I am still in remission provided I don't eat any of my intolerances. I have regular bloods taken ESR, CRP, Platelet count, Plasma viscosity etc and have colonoscopies every other year. The next one is due this autumn.

I do still take a low dose of asacol 400mg x 4 times per day - I think of it as my security blanket and Professor H is happy for me to take it as long as I want to.

I did use elemental 028 and having looked at Vivonex I wouldn't have gone into remission using that product as it contains corn, which is one of my intolerances. I think corn is a problem for a lot of people, but unfortunately is in an awful lot of foods. You do have to have active Crohns to start on an elemental diet, there is little point in starting if you are in remission.

Hope this helps.

Mattie

 

[Lady Organic]

Thank you Mattie.

elemental diet has been proven in research to be effective in people with Rheumatoid arthritis who do not have crohns, so that why I decided to try it, although my arthritis is IBD related it is not RA. so yeah, EN it is not only for CD. I am also guessing it could put a lot of other inflammatory chronic diseases into remission just like for CD but I didnt research furthermore the subject. I belive most of these disease have all in common a poor balance in gut flora (due to wrong diet, western style diet that is) which cause gut permeability and proliferation of bad bacteria in colon. EN and fasting help decrease the number of bad bacteria in the colon and proper diet encourage good bacteria balance and proper permeability as well.

It is true corn starch is present in Vivonex, but that was the only time I had corn in a long time, and startch is only the sugar from the corn, so its allergenic potential is not the same as complete corn.... But it would definately be worth trying E28 which has different ingredients and at least no GMO's. Sometime I think my CD is not food related or Im part of the 10-30% failure with food approach or its too late as I may have burned out all my natural enzymes with excess of junk food and years of over doses with purinethol, a chemiotherapy that kills good cells and enzymes in body... Also My CD is very look alike UC and Dr Hunter tells us EN is not effective in UC and in most indeterminate colitis. This info about UC is consistent with Dr Seignalet findings whose diet (which I am on) is effective only for CD and not UC, but effective in RA and lots of other chronic infl diseases.. although I have heard of anectodal stories of success with UC...

do you know if most of Dr, Hunter patients who fallow the diet take asacol? At time of diagnosis, was your CD mild or severe? where was it located?

 

[Mattie]

Thank you Mattie.

elemental diet has been proven in research to be effective in people with Rheumatoid arthritis who do not have crohns, so that why I decided to try it, although my arthritis is IBD related it is not RA. so yeah, EN it is not only for CD. I am also guessing it could put a lot of other inflammatory chronic diseases into remission just like for CD but I didnt research furthermore the subject. I belive most of these disease have all in common a poor balance in gut flora (due to wrong diet, western style diet that is) which cause gut permeability and proliferation of bad bacteria in colon. EN and fasting help decrease the number of bad bacteria in the colon and proper diet encourage good bacteria balance and proper permeability as well.

It is true corn starch is present in Vivonex, but that was the only time I had corn in a long time, and startch is only the sugar from the corn, so its allergenic potential is not the same as complete corn.... But it would definately be worth trying E28 which has different ingredients and at least no GMO's. Sometime I think my CD is not food related or Im part of the 10-30% failure with food approach or its too late as I may have burned out all my natural enzymes with excess of junk food and years of over doses with purinethol, a chemiotherapy that kills good cells and enzymes in body... Also My CD is very look alike UC and Dr Hunter tells us EN is not effective in UC and in most indeterminate colitis. This info about UC is consistent with Dr Seignalet findings whose diet (which I am on) is effective only for CD and not UC, but effective in RA and lots of other chronic infl diseases.. although I have heard of anectodal stories of success with UC...

do you know if most of Dr, Hunter patients who fallow the diet take asacol? At time of diagnosis, was your CD mild or severe? where was it located?

I don't know if most of Professor Hunter's patients take asacol, I'm sorry. I would expect not, but it's not a question I can answer. When initially diagnosed my Crohns was moderate and is located in the anus and rectum.

 

[dave13]

I am not decrying the SCD diet, I think it's a good approach. But I know from experience that SCD allows some foods which I would have problems with. I am intolerant to wheat , corn, oats, dairy, soy, citrus fruits, tea and coffee!

I know if I eat any of these I will flare and have diarrhoea, so I don't eat them.

The SCD does not allow wheat,corn,soy or oats.Dairy in the form of properly prepared SCD yogurt and some hard aged cheeses are allowed.Citrus fruits are legal,and so is coffee if diluted heavily with water to make it weak.