More validation of Specific Carbohydrate Diet

[lbligh]

This is an article from the University of Massachusetts Medical School:

http://www.umassmed.edu/news/news-a...ce-based-diet-for-inflammatory-bowel-disease/

This is, for all intents and purposes, a test of the SCD. The diet used is a variation on SCD. (I would like to see more credit given to Elaine Gottshall!)

This table is the food list used in the study:

http://www.nutritionj.com/content/13/1/5/table/T2

Here's what my researcher husband says (he doesn't do online forums but he said I could post his assessment):

"They had 27 persons do the diet (out of a larger pool that was offered the diet), but only had medical records on 11. Of particular note, of the 27, 24 had self-reported improvement. Of the 3 non-responders, 2 actually had c. difficile infection as the root cause of symptoms. So, barring that, it looks like this reduced symptoms in virtually every person who tried it and had modest compliance. It only appears to have provided full remission in maybe 75% of cases, which is pretty much what Gottschall said.

The only supposedly systematic work behind it is in reference 15, here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2777480/... But that is nothing more than a literature review, followed by statistical analysis of a pool of about 500 people, where their "inflammatory index score" (a summary measure of each person's diet, based on the scores they assigned to foods in their literature review) was barely a statistically significant predictor of blood markers for inflammation. There is no rationale that I can see for adding oats, other than the doc thinks oats are a good prebiotic food.

FWIW, here's the list of foods with "inflammatory index", where positive = anti-inflammatory, negative = inflammatory. Purely based on lit review, and it looks like most of the evidence was in vitro -- they exposed cells to the foods and noted TNF-alpha production. Their index is not actually an index of anything physical, it's a summary of the articles in the literature. So you can't actually tell if something is hugely inflammatory nor not, all you can tell is that the preponderance of articles suggest that it is inflammatory: On that table, on "carbohydrate" and fat (sat fat, MUFA) appear to be inflammatory. So it's not very helpful.

http://www.ncbi.nlm.nih.gov/.../PMC2777480/table/tbl2/

Basically, this shows that the SCD works. To some measurable degree for almost everyone, and completely for about 75% of cases who are willing to do the diet."

The full article is here:
http://www.nutritionj.com/content/13/1/5

 

[Orchid]

Results are extremely suspect unless there was bloodwork done and regular colonoscopies. Self reports of improvement don't count for much given the nature of IBD ie the possibility of silent inflammation and the fact placebo could easily be damaging results. Please don't misrepresent data.

 

[VeganOstomy]

Results are extremely suspect unless there was bloodwork done and regular colonoscopies. Self reports of improvement don't count for much given the nature of IBD ie the possibility of silent inflammation and the fact placebo could easily be damaging results. Please don't misrepresent data.

I hate to admit it, but this is true. I was in "remission" according to my CDAI while in a trial for Humira and Prednisone, but a colonoscopy revealed such extensive damage to my colon and rectum that I needed an ostomy.

It's also disappointing that out of 40 people only 11 had their results published and almost all of those 11 were on powerful drugs.

In such a short-term study, without any before/after colonoscopies/blood work/fecal analysis, and with such a small sample selected in the end, it's hard to say this proves anything. Whenever I see studies suggesting improvement on a particular diet, I always look for control groups (none were in this study) and the previous diet they were on (which this study lacks too). Going from a standard American diet to just about anything else will usually produce short-term results. Hopefully, they can follow up with the 11 in another two years.

 

[lbligh]

They did use more than self-reporting, for the 11 for whom they had complete medical records:

"Medical records of the eleven patients for whom we had complete data and used the IBD-AID to help treat their disease were retrospectively reviewed and their progress was assessed using the Harvey Bradshaw (HBI) and Modified Truelove and Witts Severity Index (MTLWSI) scoring systems [16,17] applied before and during the use of the IBD-AID. Review of these patients included clinic notes from gastroenterologists, primary care physicians, nutritionists, surgeons, hospital admission and discharge summaries, as well as laboratory data (i.e.; hematocrit, albumin, erythrocyte sedimentation rate (ESR), C-reactive protein (CRP), drug concentration levels, imaging studies, and endoscopic evaluation. An HBI for CD patients or MTLWSI for UC patients was included or estimated from information provided by clinic notes. The data was compared before dietary treatment, and evaluated 1–3 months after patients stated they followed the IBD-AID. "

 

[Orchid]

Where are the study specific colonoscopies at week 0, halfway point, and the end? Where are the weekly bloodtests? A serious study is quite a bit more detailed then having a random scatter of records.

 

[VeganOstomy]

They did use more than self-reporting, for the 11 for whom they had complete medical records:

"The data was compared before dietary treatment, and evaluated 1–3 months after patients stated they followed the IBD-AID. "

Where is this data? I didn't see any before/after colonoscopy photos or any blood results in the study data. It's be quite interesting to see. I had DOZENS of tests done while in a study - several scopes, many fecal, blood urine tests, plus a very long and detailed questionnaire (not the few questions that the HBI this study used) in addition to a bowel frequency diary.

 

[Orchid]

Making a big claim in science, especially medical science, puts an extraordinary burden of proof on the party making the claim. Trying to claim SCD is effective therapy for IBD is a claim about the size of Rhode Island, and requires levels of proof and exactitude on the same scale. I simply don't see that here.

 

[Namaste]

Thanks so much for posting this study and details, Lbligh! I contacted Barbara Oliendzki directly last summer, and she provided me some details on this study. She said that getting funding is quite difficult, as the diet is not a drug. But, one of the reasons they had not published more details on the diet is that they wanted to make sure that the diet really worked. She told me they have modified the Gottshall lists somewhat to include cocoa powder, maple syrup, and also stone ground oatmeal.

Our son, Tom, has followed the diet now for a year, and, his doctors are amazed that he has gone into remission so quickly. A year ago, April 2013, Tom was wasting away, in severe distress, he could not even get off the couch. He had lost more than 25 pounds on an already thin frame. (He weighed 115 and he's 5'8".) He had a really bad doctor, too, who had him on Asacol, even though that is NOT a drug for Crohn's, as we found out.

We found new doctors, and Tom was hospitalized with severe Crohn's symptoms. They found that he had a C diff. infection. After he had been on Flagyl for a couple weeks, (his third round since November 2012) and was stablized, a colonoscopy in August found severe Crohn's and evidence of fistula. They did put him on steroids and imuran.

Tom has been weaned off the steroids and is still taking imuran, but that's it. He has followed the SCD regimen, and it's amazing -- so great to see him thrive again. The diet is actually quite nutritious and is similar to Paleo, which makes it a little easier for people to understand. And, he is so much better it's difficult to believe.

In fact, in January, Tom had some outpatient surgery/diagnostic to check on the fistula issue. The surgeon was amazed. He came out to talk with me, and said that he could not find evidence of a fistula -- and he searched for it for quite a while, he said.

We were supposed to see Tom's GI last week to talk about next steps, but he was two hours behind, and they suggested we re-schedule. We'd like to talk about weaning off imuran, but I was just wondering if others have gone off all drugs, with their doctors' permission. I really don't like reading about the long-term side effects and dangers of these drugs.

Thanks much for your help!

 

[theOcean]

Namaste: I'm not sure if you've read the rest of the replies to the study, but I think the rest of the people participating in this thread are in agreement that it is not helpful for IBD and that the study is flawed.

Asacol is not technically a medication for Crohn's -- it's for Ulcerative Colitis -- but some people with Crohn's do actually find it effective. So it's not necessarily that your son had a bad doctor, though I don't know how he was treated otherwise.

I would advise your son to stay on Imuran, as being on an immunosuppressent will help prevent future flare-ups. If he has fistulizing Crohn's like you've stated, his illness is already pretty severe and he shouldn't consider going off of it. I'm a similar case who also has fistulizing Crohn's.

Crohn's left untreated is far more dangerous than the drugs to treat it can be.

 

[vonfunk]

Asacol (5-ASA) is a Crohn's medication suitable for mild to moderate Crohn's. The reason it is more common in UC is because it acts as a topical anti-inflammatory, breaking down in the GI tract and lining the intestines. UC inflammation is limited to the epithelial layer as such the effects of 5-ASA are greater. Because Crohn's goes deeper than epithelial the drug doesn't work in more severe cases, but people with milder inflammation can see results from the medication.

 

[Orchid]

If you stop taking Imuran your son's illness will come out of remission, SCD is NOT treatment and is at best an adjunct for treatment and it's therapeutic potential has never been established, if it has any at all. This study does nothing to prove anything because of bad methodology. Your son's improvement could easily be a result of Imuran because it's utterly impossible to tell what's helping in this kind of environment. And vonfunk is right, Asacol is CD medication, just very mild.

Also vonfunk, I have to say, the new sig is kickin rad and very true.

 

[kel]

I would wait a little while to stop the Imuran especially if he is just coming off steroids.

 

[capslockcrohns]

It's a little sad to see people completely denying SCD as a treatment for Crohn's disease. Maybe the study was flawed, but to completely ignore all the testimonials from patients is ridiculous. I realize that Crohn's can go into remission on its own, and drugs can often help with inducing remission, but take a minute to go on Amazon. Look up "Breaking the Vicious Cycle". Look at the hundreds of reviews. If even ONE of those people had remission induced by SCD, it's worth a try. To say "don't do SCD" is completely ridiculous. Because it's worth a month of avoiding certain foods if it gives you drug-free remission.

A lot of things aren't "properly tested" but if it puts some people in complete remission, you shouldn't say that it "isn't a treatment".

 

[theOcean]

I feel like Amazon reviews probably have a little bit of bias behind them.

You can try SCD, but it isn't a replacement for treatment. At best, I agree with Orchid: it's worth trying in combination with treatment.

 

[vonfunk]

SCD and other forms of restricted diet can help some people as part of a treatment regime. SCD is restricted diet as such eliminates a lot of the standard food triggers that can trigger a flare up in some people. There are a fair amount of people that can control their disease through diet. My old freeloader was able to keep hers under control without relying heavily on medication.

No one is saying "Don't do SCD", what people are saying is that you should not rely on it completely and to use it as adjunct therapy. People have pointed out the study is flawed, and it is. There are people who swear by SCD, I can understand that, because it does help some people who have a disease that can be controlled by diet.

And you are correct there a lot of things that aren't "properly tested", but also in that vein the placebo effect is still an effect. On average, if a group of people genuinely believe that something will work, roughly 25% of people will see an improvement in their condition to some extent because of the placebo effect (The numbers vary depending on the study you look at but 25% is the average).

And Orchid thank you, Oscar Wilde was indeed a brilliant man.

 

[Namaste]

In response to those who say that SCD is not a treatment for Crohn's, I disagree.

As for whether the doctor that Tom had before was bad, I documented what happened, and I think the facts speak for themselves. Here's an excerpt of the letter I wrote him, after Tom was finally provided proper treatment:

was present after Tom’s colonoscopy that you performed in January 2013. At that time, you advised Tom (who was still just coming out of sedation) that his colon looked relatively clear but that there was evidence of Crohn’s at or near the ileum. You also stated that the Crohn’s was “mild” and that you would treat Tom as though he had ulcerative colitis. You prescribed Asacol. Physically, Tom was at that time in fairly good shape, although still weak and recovering from the abscess that he had suffered and was hospitalized for in November 2012. Tom was not in an active flare in January 2013.

Tom tolerated the Asacol fairly well but began experiencing symptoms of a flare in April 2013. He contacted your office with abdominal pain, diarrhea, and nausea. At that time, you did not see him, but accused him of not taking the Asacol. Tom admitted that he had not taken it every day. Again, without even seeing him, you attributed the flare to his non-compliance. You, and especially your nurse, berated Tom repeatedly, for his failure to take the Asacol. You did not change the treatment or take any diagnostics or other tests. You put him on an antibiotic (Flagyl or Metronidazole) to treat the fistula that you believed was the cause of the flare.

Tom had a very severe reaction to Flagyl at that time, but he took the course of the treatment and felt better for a couple weeks. Symptoms while taking Flagyl included severe gastrointestinal pain within minutes of taking the medicine. Tom could not get up off the couch or bed for hours, and lay in a fetal position. Tylenol/acetaminophen did not touch the pain. As a result, Tom lost his job, as he could not work. He complained to you and your nurse of the pain and nausea, and, over the phone, again, without seeing him, you prescribed anti-nausea medicine, which did nothing. You and your nurse appeared indifferent to Tom’s pain and suffering.

Then, in late April or early May, Tom found out from the pharmacy that Asacol was being discontinued. He called your office, but neither you nor the nurse were aware that Asacol had been discontinued. After some interaction with insurance, you prescribed Apriso, another mesalazine similar to Asacol. Tom seemed to have a severe reaction to the Apriso, and his condition worsened through May and June. Throughout May and June, Tom was in severe pain, was nauseated and could not function. He lost more than 20 pounds, as he could not eat. Despite several telephone conferences, you never even had him tested to see if he was in a flare or if he had an infection. Your office even stopped returning his telephone calls. In late June, after another call to your office begging for help, your nurse told Tom that he had not been compliant with your orders and that he should just find another doctor.

Fortunately for Tom, we were able to reach out to friends, one of whom is the chief of staff of IU Health. We should have done that long before.

Immediately, Tom was enrolled as a patient at IU Hospital and referred to the Gastroenterology Department. He was hospitalized in early July and was immediately given a number of tests. The doctors quickly determined that Tom had an infection with Clostridium difficile, a very dangerous condition. You had never even checked or ordered any diagnostics after the round of Flagyl and despite Tom’s ongoing reports of severe pain and diarrhea, even though infections with C. difficile are fairly common and the symptoms of an infection mirror that of a GI flare.

We have also learned that, since 2006, “important findings have emerged about the value of mesalazine” (Apriso, Asacol, and the like) in the treatment of Crohn’s. “For mild or moderately active Crohn’s disease, mesalazine seems little better than placebo.” See enclosed article from the BMJ (May 2008).

Tom is now under the able care of a team of doctors who assure us that they are dedicated to getting and keeping him in remission. He is on stronger medicine, including steroids and Imuran. He is now able to eat, is gaining weight and strength, and his pain is well-managed. His bowels are functioning more properly and he is being checked and monitored weekly via blood tests and other diagnostics. Now, he can function and work to get his life back in order, even though he is still very weak. A recent colonoscopy, performed a couple weeks ago, shows that he is clear of C. diff, but that he now has a severe case of Crohn’s disease.

FYI -- Tom has been off steroids since last September. He is in clinical remission, and, as have many on the SCD diet, we are looking into weaning him off Imuran, which appears to have many more dangerous side effects.

Finally, I would like to know if those who question the diet have even tried it. Tom has been faithful to the diet since April last year. I don't think it's a treatment for C. diff, but he's been so much better since he came out of the hospital that it's amazing. He says that he had suffered from pain and diarrhea for years; now, it's gone.

 

[Orchid]

There's a fundamental misunderstanding here about the nature of science, it doesn't care about one persons anecdotes or Amazon reviews because they're not carefully controlled and exacting. So many things could be influencing your personal experience and they need to be carefully weeded out or nothing can be learned.

You can call SCD effective Crohn's Disease treatment when there have been several large studies involving controls and/or placebos in some fashion with colonoscopies on all patients at week zero, the half way point, and end point, along with weekly bloodwork for every single inflammatory marker and fecal tests for the same. Then give the studies a few years to bake and be criticized by peers and absolutely no serious flaws or objections are found, you might get to call it "effective Crohn's Disease treatment".

This is what every drug/therapy goes through, to make sure it actually treats the illness it's indicated for, to make sure it's safe, and protect people from hearsay, fads, and anecdotes.

 

[lbligh]

But in the meantime there is enough evidence that the diet helps many people with IBD, that doctors really should make their patients aware of it. "This is something that seems to help many people. You might try it for a month while we continue testing and wait for your colonoscopy appointment."

Just because the diet hasn't received the full scientific peer-reviewed scrutiny that drugs are required to go through, doesn't mean it is not effective. ("Eppur si muove," so to speak.)

Drug companies aren't going to fund studies of diets that could be taking people OFF their expensive drugs. Add to that the impossibility of doing the gold standard of medical research, the double blind study, where a diet is concerned.

I am hopeful that the success of this teeny tiny Massachusetts study will LEAD TO the full-scale large study that does need to be done, with all the colonoscopies and blood tests etc. etc.

It's a start.

 

[Orchid]

But in the meantime there is enough evidence that the diet helps many people with IBD, that doctors really should make their patients aware of it. "This is something that seems to help many people. You might try it for a month while we continue testing and wait for your colonoscopy appointment."

Just because the diet hasn't received the full scientific peer-reviewed scrutiny that drugs are required to go through, doesn't mean it is not effective. ("Eppur si muove," so to speak.)

No, they shouldn't. In a world with complete information saturation where anyone can get their "miracle treatment" out there we need people to stand as beacons, and they have a duty to us to only treat people with therapies and medications that are proven and safe. The dangers are simply too great, to us, and to them.

Maybe it works, we don't know. The effect of placebo is so powerful and the insidious nature of IBD means it requires intensive testing. Please stop advocating people risk their health on untested treatment.

 

[vonfunk]

The article states "all (100%) patients were able to discontinue at least one of their prior IBD medications", If you read through the article you will find that this 100% is based on the 11 patients that they had the full medical history. At no point states that they were able to completely stop all medication, you look at the table of those 11 people that achieved remission will using this diet (found here), there is only one who was able to continue without medication.

SCD can be beneficial for some people with IBD, and a small subset can remain in remission using the diet as their maintenance therapy. But everyone in the study was already on medication when they started the diet.

The placebo effects is incredibly strong. On average 25% of people who believe completely in a given treatment, even if bunk, will show an improvement, this number rises to as high a 40% when it is provided by someone of authority or someone who the patient trusts.
I would not want my doctor to recommend an alternate therapy. I want my doctor's opinion to remain based in what is proven. When I was diagnosed he told me that some people who have altered their diet saw improvement, however his advice was to keep a log of what I eat and if a food bothered me I should stop eating it.