Anyone tried the Specific Carbohydrate Diet?

[killerzoey]

Hello

I'm newly diagnosed and have been taking 9mg Entocort/day for about a week. I haven't seen any changes yet in my pain which is right-sided (one spot down low and one up high, the down low point radiating into my low back, buttocks and down my right leg).

In the mean time I have been doing some reading online (don't we all?) and thought I might give the Specific Carbohydrate Diet a try.

What I'm puzzled about is how to begin this diet while in what I presume to be a flare, since so many of the "legal" foods are "illegal" with flared-up Crohn's, such as nuts, raw fruits and veggies. I guess I would just modify the diet as needed, but it is so restrictive I am wondering if this is enough. I would have to give up supplementing with Ensure as I have been as it is not acceptable to the diet.

Thanks for reading - kid's crying - gotta run!

 

[Sojourn]

I don't know a lot about it. But if I was to eat a lot of raw veggies and nuts it would probably be tantamount to suicide where I'm at right now. If you cook the veggies until they're real soft, that would be one option.

Just an opinion, but it might not be a good idea to go on any extreme diets right away. Especially since you're currently in pain. You could just take inventory of what foods treat you better, and what don't. You shouldn't be trying to cure Crohn's with your diet at this point, but finding foods that don't make your intestines work too hard so they can recover.

I had pain for awhile that extended from my lower-right abdomen down into my thigh and knee. I don't know how it was all connected. But when I had the surgery to drain the abscess in my abdomen, I didn't have the pain in my leg anymore after I'd been out of the hospital a couple of weeks.

 

[DarrylP_Ajax]

Hello

I'm newly diagnosed and have been taking 9mg Entocort/day for about a week. I haven't seen any changes yet in my pain which is right-sided (one spot down low and one up high, the down low point radiating into my low back, buttocks and down my right leg).

In the mean time I have been doing some reading online (don't we all?) and thought I might give the Specific Carbohydrate Diet a try.

What I'm puzzled about is how to begin this diet while in what I presume to be a flare, since so many of the "legal" foods are "illegal" with flared-up Crohn's, such as nuts, raw fruits and veggies. I guess I would just modify the diet as needed, but it is so restrictive I am wondering if this is enough. I would have to give up supplementing with Ensure as I have been as it is not acceptable to the diet.

Thanks for reading - kid's crying - gotta run!

Just an idea for some more info on this topic, search the forum for previous threads on SCD, there has to be at least half a dozen lengthy threads on this topic which i found pretty full of information and experiences from many ppl

 

[killerzoey]

Thanks, both of you. I'll look for the other links on SCD.

Sojourn, I appreciate your perspective. I am new at this and scared, and maybe venturing a bit far at this point in considering such an extreme diet.

I have to say, though, that I am at a total loss as to which foods treat me better or worse. I keep reading how people seem to be able to identify their trigger foods, but to me the pain is a constant crescendo from morning 'til night, with no apparent change regardless of what I eat. I am drinking Ensure a lot and eating minimally and low-res, trying to let my intestines recover. But it seems that the pain is getting worse, not better.

I wonder if Ensure is the culprit? Could I be having a reaction to that?

 

[DarrylP_Ajax]

Personally i tried the SCD diet for about 2 months, and didnt feel like it was doing anything, so i stopped, all i ended up doing while i was on it was losing a lot of weight because of the lack of calories u can get from the diet

 

[soupdragon69]

The GI team I am under here in the UK have devised (and it is research based) a diet called LOFFLEX (google it) specifically for Crohn's patients of foods that they have found are least likely to trigger them. They use it for 2-3wks then start to reintroduce the more difficult foods that are likely to cause probs.

They mainly use it for folk like me that have been on elemental drinks as a reintroduction to food again but do use it for other patients that need time to let things settle more without doing the elemental. The elemental is also dairy free and I am wondering if Ensure is irritating you from a dairy perspective Zoey? Can't remember whats in it.

It can be a difficult diet because it is gluten and dairy free, low fat, low fibre and you are restricted on what fruit and veg you have and must peel everything too. It also means no caffeine, carbonated drinks or citrus fruits but you can have herbal teas for instance. You can eat all meat but pork and processed foods.

I have been on it 3 wks now and am managing reasonably ok.

I saw my dietitian today and she is pleased with my progress so far so I can start to try some of the excluded foods now but must take it slowly.



See what you think....

Jan

 

[manatee]

I tried the SCD for one week and gave it up. They say to try it for 30 days and if you don't notice a difference then it might not work for you.

Let me say this: The diet is EXTREMELY tough! Especially if you like bread... it will likely be the hardest diet you will ever try.

But, if you happen to be in a situation where you need to lose weight, you will definitely lose weight on the diet.

I may give it another shot, but it is soooo hard to do.

 

[killerzoey]

Thanks, everyone.

soupdragon, I had not heard of the Lofflex diet. I looked it up and found a good PDF of instructions and tables about which foods are allowed and which are not. Very informative.

I think perhaps it is the Ensure that is causing me irritation. The rise in pain coincided with both starting the Ensure and my taking about iron pills for about a week. It's been a few weeks without iron and I'm still in the same amount of pain.

I guess I should stop taking the Ensure and just try eating off the list for a while. It's so convenient with the Ensure but it's time to try something else.

Also, I wonder if I needed to do the Ensure thing so much as I'm not experiencing diarrhea.

 

[killerzoey]

1 Month Into It...

A month into the Specific Carbohydrate Diet now.

It IS challenging - especially at first. The gut bugs cry out for all the stuff they've been eating, which is all of that undigested carbohydrate that abounds when eating a standard diet, especially in a damaged gut. So for the first week or so I went through a detox where I could barely think or function.

Feeling much better now. Since I didn't have much D my results may not be as dramatic as others. But I know what I need to eat to heal my gut, so it makes life much easier in a sense. I make the yogurt every other day (dh eats a lot of it too).

My "output" has not been this good for a very, very long time. Sorry to be crass but it might help someone to know that for months prior to the diet my output was anywhere from pebbly with mucous and blood to yellow, thin and floaty. Now it looks like it should and it no longer hurts to go to the bathroom.

I just started introducing some raw food again and my output appears to have stayed the same. I am taking this to mean that some healing may have occurred.

Just wanted to share my experience so far for what it's worth.

---------------------

Weaned off Entocort a week and a half ago. Was on Asacol but haven't refilled script - need new insurance to kick in as I can't afford it otherwise (had been using samples). So all I'm taking now is Zoloft, which I started only a week ago.

Abdominal pain is much lessened but I believe I am having hip pain. I am seeing a rheumy Sept. 18th.

 

[Mazen]

Here is an article from the CCFA about SCD

http://www.ccfa.org/about/news/scd

 

[Kev]

Welll, I don't think the SCD is in the cards for me. I thought my current diet was hard but in looking over the restrictions of the SCD, and in knowing me, I don't think that I could maintain that diet long term. Even short term would be a mission impossible. A diet will only work if you can stick to it, and in this case, I don't think I could do that.

 

[jmcgonigal]

I have been on the SCD for 4 1/2 months now, and have lost some weight (I think a lot of it was water weight). I am still having a few problems, which usually coincides with eating too many nut-flour products. It was so hard over Christmas, I nearly threw in the towel, but I promised myself that I'd try it for at least 6 months. There are some really good cookbooks out there that are specifically for this diet. The no-bread, no chocolate is the hardest thing for me, and sugar is in EVERYTHING!!!! My mom says that I look a lot healthier now, and my husband is pretty supportive, but he is a carb guy, and he hasn't given them up with me, which sometimes is difficult. It is extremely labour-intensive...I usually devote Sunday afternoons to making ketchup, bread, cookies, whatever I need for the week. Almond flour is also expensive, and you need the right appliances to make some of the recipes. I plan on getting a food dehydrator and a tortilla maker this summer along with an ice-cream maker. Previous to this diet, I was constipated a lot with my CD, but, I can say that I have hardly had any problems that way with this diet. I think it just takes time for one's body to learn how to work differently. I will be getting my bloodwork done in a few weeks at the doc's, so I'll see what my inflammation number is and what my iron levels are, etc.

I am unwilling to go on steroids, so I wanted to try diet first. There are too many success stories not to try it.

Good luck!
J McG

 

[jgi]

SCD Soon

Hi,

I think I will try SCD soon. Just started to read on the internet about it days ago. Thanks to those who shared their experiences here, that's very valuable to have an idea of how toff that might be, how long that might take to see effects.

I have not started yet... I feel I am in a phase of resistance. I have difficulty imagine I will remove "Potato", "Bread/Flour", "Rice Product", "Soya Product" which are on most of my current menus....

I feel though there is really something wrong with the bugs in my gut and even, that some compulsion I have about eating to which I can't resist, I feel that is coming from there, like if my body is not so responsible of it, like if that is not part of me but does create me problems.... anyways, I will give some news

Regards,
_________________________
Jean Guillaume
Diagnosed with Crohn's Disease in 2002
Remission ? Not quite sure yet... much better but still issues !!

-Humira 40ml injection once every 2 week
-Azathioprine 175mg once a day
-intravenous iron 300mg about 20 times in last year. (4-5 times every 3 month for anemia)
-Calcium + Vitamin D
Surgeries: Ileocecal Resection in 2003

Others old med: Prednisone, Pentasa

 

[Tantija]

Here is an article from the CCFA about SCD

http://www.ccfa.org/about/news/scd

Hi! I just read the article:
“…Arthur D. Heller, M.D., a New York City gastroenterologist who is certified by the American Board of Nutrition, points out several inconsistencies in the diet. "Foods are excluded," he says, "because of their purported inability to be digested well. But of the foods allowed, legumes are known to contain certain carbohydrates that are not well digested by humans. And while the diet prohibits regular sugar, it allows most fruits and fruit juices, which are high in fructose, or fruit sugar. Not only is fructose dense in carbohydrates, but fructose malabsorption can cause cramps and diarrhea, intensifying the very symptoms the diet is designed to alleviate."…

The article does not say that by the diet you have to soak allowed legumes for 12 hours before the cooking and wash out very well. ( I do not use any legumes just in case they still have quite enough f starch).Also by the diet
You are not allowed polysaccharides (all types of sugar) but allowed monosaccharides like honey and fructose in fruits. It is always works very to grow the doubts in the readers minds well when you tell only part of the subject 

I am not going to argue it probably does not work for everyone but it works for me. As I told earlier my blood tests were getting better after 3 weeks of the diet.

Just for comparison:

23/11/2011

HB 12.1
PLT 457
Lymphocytes 0.5
Albumin level 32
C Reactive Protein 20

15/12/2011

HB 12.3
PLT415
C Reactive protein 4.11 (finally normal)

13/03/2012

HB 11
PLT 332 ( finally normal)
Lymphocytes 0.6
C Reactive Protein <5

29/05/12

HB 12.8
PLT 288
Lymphocytes 0.6
C reactive Protein <5

24/09/2012

HB 12.7
PLT 263
Lymphocytes 1.0
Albumin level 44 ( finally normal)
C reactive Protein <5


Letter from My doctor, Dr Peter Irving MA MD MRCP Consultant Gastroenterologist:

06/07/2012

I saw Tatjana in the IBD clinic today. She has gone onto carbohydrate modified diet to which she seems to have remarkable response at least as far as her inflammatory markers are concerned. This is supported by the fact that she feels markedly better. If this is really down to the diet then it is, of course, in contradiction to most of our knowledge regarding diet and Crohn, s disease to date and this is therefore very interesting.

I had MRI scan on 03/08/2012:

Comparison is made with the previous small bowel MRI dated 26/11/2011. Several skip lesions are again seen extending from the distal jejunum through to the neoterminal ileum. These skip lesions appear less extensive than previously and the mural thickening and mural enhancement is less marked than before. Less restricted diffusion is seen. Fibrofatty proliferation is again noted within the adjacent mesentery. There are 2 dominant skip lesions, one measuring 12 cm and involving the neoterminal ileum and one seen just inferior to this segment in the mid ileum again measuring 12 cm. Pseudo sacculations are seen within this more proximal skip lesion with mild prestenotic dilatation of 3 cm. The proximal and mid jejunum are unremarkable. As previously the sigmoid and especially the rectum appears thickened suggestive of a chronic distal colitis.
Con. Improved appearance to the skip lesions as described which now appear more chronic inflammatory in nature.

Letter from My doctor, Dr Peter Irving MA MD MRCP Consultant Gastroenterologist:
26/09/2012

I saw Tatjana in the IBD Clinic today. She continues to respond to specific carbohydrate diet. As she told me it would, her MRI shows improvement in the inflammatory activity of her small bowel disease, as well as its extent. It is difficult for me not to recommend that she should once again reconsider immunomodulation, given the fast that she still has active disease there, although I completely understand why she would rather simply continue with her current strategy as it appears to be working for her.


What I do not understand is why I still have the inflammation if my blood inflammation markers do not show any…

I have to admit that I was expecting much better results but maybe it is not possible to get miracle results after 14 years of the inflammation with in 8 month of the diet. ( My inflammation markers were much more worth in 2006 before the operation and were much better after the operation but after few years were getting worse again.)

I honestly do not think that “…the potential for nutritional deficiencies on the diet…” is more harmful than the harm of the immunomodulators.

 

[Tantija]

And by the way the warning to everyone who eats a lot of nuts as I did:

23/11/2011 Blood test results:

Alanine Trans Level 14

24/09/2012 Blood test results:

Alanine Trans Level 62 ( if ALT >40 iu/L (male) or >30 Iu/L (female) and fatty liver suspected please request GGT separately.


When I saw these results I realised that I was feeding myself like French feed the gooses for pate foie gras.
I was eating a lot of walnuts as snacks. I stopped eat them now but still have to find something for snacks. But I still eat my nut bread in the mornings, this is just 2 small slices.