The Specific Carbohydrate Diet, other questions

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Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 5/7/2009 3:38 PM (GMT -6)   
I am sure that this has been brought up before on this forum but I am a newbie and I thought I would start a new thread.

I have relatively recently been diagnosed with Ulcerative Colitis (September 2008).

My initial symptoms started in July, with on and off again diarrhea, finally gave in and saw my Primary Care as it was more on and less off and blood started to show up. She recommended I see a GI specialist but the one she suggested was booked up at that point for about 3 months. A couple of weeks later, I couldn't take it anymore, pain in my belly, always bloody diarrhea. I spent a week in the hospital, discharged when I was really no better on Prednisone 40 mgs 2 x per day and Asacol 800 mg 3 x per day and melasamine enemas. I went back to the hospital a week later as I continued to get worse.

They told me that I was basically headed to the Operating Room. Finally someone suggested Remicaide. Per my GI doctor, Remicaide "saved my colon" Well, I did the initial infusion as an inpatient, then 2 weeks later, and the whole ramp-up thing. I was doing well. A little over 2 months ago I was at the 6 week mark and due for another infusion at the 8 week mark. I started bleeding again, this time it was not diarrhea, but blood on the outside of my stool and on the paper when I wiped. At the same time I got a sinus infection. My Primary Care prescribed a Z-pack.

Well, with the Z-pack, my sinus infection went away, and so did the blood in my stool. I mentioned this to my GI doc and he said it just so decided to clear up on its own. I found that hard to believe. All the meds in the world didn't clear it up the previous time and then it just went away on its own?...has anyone else had antibiotics and a flare ended as a result?

Well, this time about 3 weeks ago another "flare" at the 6 week mark of my Remicaide. This time bloody diarrhea. My doctor got me in for an infusion early (only by about 2 days was as quick as he could get me in). His plan then was to get me on an every 6 weeks schedule. Diarrhea went away but I am still bleeding. Now he told me to start taking Asacol 1200 mgs 3 x per day. He wants me to meet with the colorectal surgeon. I made an appointment for a second opinion, one week from tomorrow.

My questions to the group are:
1. Has anyone tried the Specific Carbohydrate Diet. (GI doc says diet doesn't matter, I find it hard to believe after all that I've read online and common sense, what you eat travels through your colon.)
2. Has anyone been on Remicaide every 6 weeks? I can't seem to find any info about doing that.
3. Would you give up this early and see the surgeon? From what I read, people live on different meds and have good times and bad times for years without a colectomy.

I am just so frustrated!

Jen
Age 34
Diagnosed with UC September 2008
Current Meds:
Remicaide
Just started taking Asacol 1200 mgs 3 x per day 5/7/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Multivitamin


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16712
   Posted 5/7/2009 5:06 PM (GMT -6)   
I tried it and it didn't help me but many people seem to have good results from this type of diet. At least maybe you could figure out what foods make your condition worse by limiting what you eat. I didn't see any results at all unfortunately.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
December 08 - Began treating with Asacol 400mg (9 a day)


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 5/7/2009 9:34 PM (GMT -6)   
Changing my diet was the ONLY thing that helped me get well again. By well, I mean no symptoms and no meds. I also took natural antifungals and still take probiotics. My doctors told me diet would not help me. I decided after 8 years of not getting "well" taking their drugs, to at least give it a try. Best decision I ever made.

Saying all that, I know there are others that have tried a diet change, but has not helped. It is a lifestyle change, not a diet change. I can never go back to the way I used to eat, and frankly, I don't wish to, if it means my symptoms could come back. You can not limit/avoid random foods to see what effects it has. There is a science behind the SCD and the antifungal diet. If you have an underlying fungal/yeast condition, it will help you. The best/fastest way to know is to experiment. All the tests I had never indicated I had such a condition, yet it was an antifungal diet that gave me my life back.

An FYI, ...antibiotics, birth control pills and exposure to moldy environment/water damaged environment are good precursors to a fungal/yeast overgrowth, even having been exposed/taken years ago.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/8/2009 8:48 AM (GMT -6)   
I've also had good luck with dietary changes, but I feel diet is only one component of my success. I also take supplements for gut healing and to reduce inflammation. I take supplements and probiotics to rebalance the gut ecology - kill off parasites, bacteria and yeasts and restore healthy gut organisms. I found a job with less stress. I drink plenty of filtered water. I exercise regularly. Like Kim, I've discovered it has to be a lifestyle change. I can "cheat" occasionally, but when I start slipping back into old ways of eating, I inevitably start to have symptoms again.

I'd suggest you check out the book Listen to Your Gut by Jini Patel Thompson. In it you'll find everything you need to know about alternative and natural treatments for UC, dietary changes, rebalancing the gut and restoring healthy digestion. Also, before I'd consider surgery, I'd try a predigested liquid diet which will give you the nutrition your body needs while allowing the gut to heal. Studies show it's as effective as steroids are for most people. The book The IBD Remission Diet will give you details.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1916
   Posted 5/8/2009 9:34 AM (GMT -6)   
It is so good to hear that some people have their disease under control. It gives me hope. I am going to check into these books and diet.
diagnosed 1/09 with colitis,54 yo, colazal, fish oil, synthroid, cymbalta


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/8/2009 9:45 AM (GMT -6)   
I did the SCD faithfully and for a long period of time with no success. I tried a host of other diets and supplements with no positive results. However, I am a strong believer in UCers doing everything they can in order to find relief. If you have to resort to surgery at least you will with the mind that you did all you possibly could to avert it. When I made the decision to have surgery I did it knowing I had exhausted every avenue.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


jeffereyr123
Regular Member


Date Joined Jul 2007
Total Posts : 65
   Posted 5/8/2009 10:36 AM (GMT -6)   
I was on the specific carbohydrate diet two times. I followed it to a t. The first time I was on it it worked fairly well. I went from having a bm every 1 to 2 hours to every 8 or 9 hours. The second time I tried it, I didn't really have any success with it even though I was still following it very strictly. However, I wasn't nearly as sick the second time I tried it.

I did do Remicade every six weeks instead of eight. I switched to every six weeks because I lost response to the drug. I didn't experience any problems switching to every six weeks, but I didn't really get any additional response either.

vancan007
Regular Member


Date Joined May 2009
Total Posts : 34
   Posted 5/8/2009 11:12 AM (GMT -6)   
I am currently on Asacol 400mg 3 X daily down from 1200mg 3 X daily when first diagnosed. I have tried 400mg 2 X daily but unable to do so.(I HATE TAKING DRUGS) So I am going to try SCD to see if it will work for me.
Diagnosed December 2006
Asacol 400mg 3 x daily


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/8/2009 11:13 AM (GMT -6)   
Here's the deal with the SCD: in my experience you can't necessarily "follow it to a t." There may be allowable foods on the diet that are problematic for YOU and these have to be eliminated. A lot of folks also dive into the diet and eat a lot of fibrous veggies and nut flour baked goods. These things, while approved for the diet, are not well tolerated by someone who's in a bad flare and has alot of pain and inflammation going on. The book is pretty simplistic and some of the diet's proponents have been known to be pretty zealous about strict and total adherence to the diet. The message is, "If it's not working for you, you must be cheating." I think if it's not working for you, a little tweaking and personal adaptation is going to be needed. I also strongly feel most people need probiotics and other healing supplements in combination with the diet to see the best results.


Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 5/8/2009 3:11 PM (GMT -6)   
I agree with princesa about trying to follow a diet to a "t". Even while on my antifungal diet (can be found on www.knowthecause.com), I had to carefully choose from the choice of foods, as I could not tolerate some of the allowed foods at the start. Once my body healed, I found I was able to slowly introduce more foods. After researching the SCD, I don't think I could follow it...too restrictive. If you are interested in an antifungal diet, you can search the website I mentioned and look under the FAQ. It also gives a lot of information on fungus and how it affects ones' health on many of the links. The newsletters are also informative listed on that site, too. Good luck. It may be worth it to try something like one of these diets before resorting to surgery. As well, I feel the natural antifungals and probiotics are key to getting well. Diet alone will not do the best job.

Kim

Ghena
Regular Member


Date Joined Apr 2009
Total Posts : 31
   Posted 5/8/2009 5:16 PM (GMT -6)   
Dear Jen,
GI docs will not tell u to follow a diet unless they are open to alternative healing or some have seen that it worked for their patients.
check out this site what this doctor says about SCD: http://www.drhoffman.com/page.cfm/169
this is from a super knowledgeable reputable doctor (he has a radio show every nite 710am at 11pm eastern time.)
check out that site about other things that he says on IBD (more links on the right side of the page).

i myself is a physician in my residency on Long Island and am following the SCD. The book for the Specific Carb Diet is called Breaking the Vicious Cycle. There are MANY MANY pple that swear by the diet. I started the diet after the worst flare i've had where i needed to get many transfusions after 2 hospitalizations and 30 pound weightloss.
Since starting the diet (about 2-3 weeks into it) i've been feeling well and seem to be in remission, I am taking meds as well, and supplements started to gain the weight back... u should
I am not trying to sell u this diet, but before u decide to have the surgery perhaps u should give other things a try. seems that u only found out that u have the dz not long ago, so u havent had much time to learn the dz in UR body.
You are right to an extent when u said that what u eat travels through ur colon,
although most of the absorbtion takes place in the small intestine (as we know it) however there are many bacteria which proliferate in the guts and travel throughout ur body influencing ur immune system.
i also agree with princesa that each person is different, and i would be curious to know how long she has followed the diet.
i wish u very good health
Peace
Ghena
UC

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/8/2009 5:49 PM (GMT -6)   
Ghena, I've been off and on (mostly on) the SCD for several years. I had several false starts and struggled with it in the early days. I was even told by Elaine to stop the diet as it wasn't working for me, in her opinion. However, as I said, trial and error showed me why it wasn't working for me: that I was unable to tolerate certain allowable foods like the SCD homemade yogurt. I also believe the addition of probiotics to my routine - in place of the yogurt - played a big part in my ability to heal from my initial two years of severe flaring.

Since I've been in remission so long, I've cheated on the diet quite a bit, but I always find it eventually causes problems and I get back on it more strictly. So, in my experience, it's a balance and there is no one size fits all.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 5/9/2009 3:00 PM (GMT -6)   
Hey everyone!

Thanks for your replies. I've got some good ideas of books and web sites to check out! I am definately not ready for surgery yet as I don't think that I have exhausted all of my other options yet.

I have made an apt with another GI doc for Friday and I am going to talk to him to see what he thinks about meds / diet / probiotics, etc. Hopefully he has more experience dealing with UC patients that are looking at other options. My current doc's comments just keep running through my mind and there just has to be something else!

Thanks again,

Jen
Age 34
Diagnosed with UC September 2008
Current Meds:
Remicaide
Just started taking Asacol 1200 mgs 3 x per day 5/7/2009
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Multivitamin


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 5/9/2009 9:06 PM (GMT -6)   
A majority of people just dont have the time to research everything you get from the supermarket(yes if you've failed and thought picking up meat from meat department was safe think again). If your too far scared, it could take years or never work. If you don't have extreme willpower and confidence in the diet, dont waste your time. You'll just lose too much weight and become sicker. If you think you can do it, good luck :)
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 5/10/2009 12:22 AM (GMT -6)   
Hey-

You might want to try eliminating things from your diet and then working up from there to see if you have any intolerances. Keeping a food journal is also a good idea.

I know for me, I seem to not be able to tolerate large amounts of fructose, artificial sweeteners, caffeine, alcohol, fried food, or large amounts of insoluble fiber. A lot of UC'ers also have problems with lactose, fortunately for me I am not one of them.

Barring that there are a number of other diets besides the SCD that UC patients have used successfully.
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements

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