SCDrecipe.com - thoughts about the specific carbohydrate diet and related issues

WINE TASTING TO BENEFIT THE GOTTSCHALL AUTISM CENTER

Tuesday, April 29, 2008

You can join the Gottschall Autism Center for a benefit evening of fine wines and delicious hors d'oeuvres. Music will be provided by members of The Dartmouth High Chamber Orchestra.

May 14, 2008
5-8 pm

Kavanaugh's La-Z-Boy Furniture Galleries
110 Faunce Corner Mall Road
North Dartmouth, MA

Tickets are $50 per person, and can be purchased at www.gottschallcenter.com.

categories: autism , gottschall autism center | permalink | digg this!

SPECIFIC CARBOHYDRATE INTERVIEW: JANE D. AND 15 YEARS OF IBS

Tuesday, March 18, 2008

Name: Jane D.
Location: Vermont

Jane D. started the specific carbohydrate five years ago after suffering from irritable bowel syndrome for 15 years. A former nurse and currently a minister, she shares her experiences, including her first months on the diet, and advice for starting out. In order to help others with the SCD, she co-moderates the scd_newengland email group along with Laura Aronson.

What health issue motivated you to use the specific carbohydrate diet (SCD)?

I started having digestive problems twenty years ago, alternating constipation and diarrhea. Immediately prior to starting the SCD I was going to the bathroom 10 or 15 times a day. It wasn't diarrhea but it wasn't good quality. It was a dribble here, a dribble there. No trophies. This led to a bad case of hemorrhoids.

At the time I served a congregation [as a minister]. On Sunday, I drove half an hour to get to church. Many times I would have to stop somewhere, such as a McDonald's, to use the bathroom. It was no fun.

What did you do when the digestive issues started?

I thought it must be what I'm eating or I'm under stress or another factor.

I liked my job. I had a great relationship with my husband. In that regard, there was nothing wrong with my life. So I started cutting out different foods.

I cut out dairy, I cut out wheat. I cut out corn. It would seem to be better for a little while maybe three months or six months. Then it would start getting bad again.

What else did you try?

I went to an acupuncturist for the hemorrhoids. When the treatment wasn't working, the acupuncturist thought it may be candida so we did the whole candida thing. But that wasn't it.

One of the things she put me on was inulin. I have never been so sick in my entire life. I was doubled up for hours with cramping.

Was that inulin alone or part of a supplement?

The inulin was a powder that you mixed in a drink such as orange juice. It didn't cause diarrhea but it produced painful cramping and gas. It was like being in labor. [note: Jane has two children]

The acupuncturist was very nice. She said, "I cannot help you any more. I've tried everything that I know."

A couple of years later I went to another alternative medicine person who did muscle testing and had me take all of this weird powder. It didn't work. I was at the end of my rope.

At this point, it had been going on for 15 years?

Yes. The hemorrhoids kept getting worse. They would bleed spontaneously. I began wearing sanitary pads--when the hemorroids let go, it was just hemorrhaging.

I couldn't go skiing. I couldn't go running. I couldn't go for a walk. I couldn't do the things I loved to do. It was awful.

Sunday mornings began freaking me out. Because of the hemorrhoids, I also couldn't stand for long periods of time. At church I began sitting on a stool behind the pulpit.

Did you have any tests done?

At one point I attended a community health care fair where they drew blood to test your iron level.

The nurse called me with the result a few days later. It's normally 35 to 40. My measurement was 24. She said, "I can't believe you're walking around."

What did you do next?

I live in the middle of nowhere. [For the two acupuncturists, I had to drive hours.] I never had health insurance so I didn't have the money for a colonoscopy. Not knowing what else to do, I kept googling things.

One day on the internet, the SCD came up. I read what was in the diet. I said, this makes complete sense to me.

Because you had tried eliminating other foods in the past?

Right. I had eliminated corn, wheat, dairy, and soy. I was reduced to eating rice everything. Plain rice. Rice cereal. Rice milk.

I ordered the Breaking the Vicious Cycle, printed out a page of what to eat, and started the SCD.

How did it go?

The gas and bloating were gone immediately. However, the toilet thing was still all over the place, the hermorhoids were bad and that kind of stuff. Also, in the first months I didn't have energy.

Did you use the intro diet?

I didn't do the intro diet because I didn't have the book at first.

But I joined the Long Island list which was a saving grace. I read those posts and stories. I thought, "Oh man, this is really going to work but I'll have to hang in there."

Then I "got it" about not trying to eat everything--to eat a few things and watch for reactions. So what I ate for the first three months wasn't much. It was fish, poultry, hamburger, applesauce, scrambled eggs, and a few vegetables. Even carrots bothered me in the beginning. I ate a lot of spinach, green beans, and winter squash.

I hadn't eaten dairy in so long that I couldn't bring myself to try it. Maybe after a month I tried some nut muffins that went over okay. But I remember when I had the die-off thing.

I was so sick. I was nauseous. I just felt awful. Because people had talked about it, I decided to hang in there. Then it was like a miracle. The next week everything was perfect.

So after three months you began feeling better?

Right. But holy cow. Before the die-off, I didn't have a lot of energy and I felt queasy. Once that gave way, I felt on top of the world.

With my digestion got in order, I visited the bathroom only once or twice a day. This allowed the hemorrhoids to heal.

I also lost 30 pounds. I was shocked.

Was that a good loss or a bad loss?

It was great! It was the last thirty pounds that I couldn't lose after I had my kids. When summer came. I went to put on my shorts and they fell off. I got to be the weight that I'm supposed to be. And I stayed that way. That was an unexpected side effect.

Did you add the SCD-legal dairy back to your diet?

It took another six months before I dared to try the yogurt and then three months after that when I ate [SCD-legal] cheese.

How is your life now?

Now I'm skiing and running again. Doing all the things that I love to do. It was an amazing gift that my health is back.

You've been using the diet for several years, have there been any experiences that stand out?

In the beginning of 2007, I went to Europe for two months with my husband and two young-adult children (17 and 21). We had always wanted to do that.

We went skiing , sightseeing, and we walked long ways, using a lot of public transportation. Before, with my hemorrhoids, I couldn't walk anywhere.

We rented apartments and did a lot of our own cooking. However, for dinner, we often went to restaurants. I was by and large ok with the restaurant food. I would scrape off some sauce. I ate some potato. That was ok. I even tried a little chocolate. After several years on the diet, I didn't have to get so technical at restaurants.

Before the SCD, for my 50th birthday, I had gone to Quebec City with my family. Because of the hemorrhoids, I couldn't walk around. I had to sit in the hotel room.

I was sitting there, turning 50 and thinking, "What kind of life is this?" I had many days much worse, with blood running down my legs and being on the toilet. But the 50th birthday, I felt really stupid that I couldn't walk around, that I couldn't be far from a toilet.

The Europe trip was a completely different experience.

Do you take any supplements, any probiotics?

Not a thing. Unless I travel, then I'll bring some probiotics with me.

Have you had any setbacks at all? How do you deal with those?

There are some SCD legal foods which I don't eat . I don't tolerate spicy foods. Periodically I try something like that and then I go back to eating things which are easy on my system.

Also, I can't have salads at two meals. I can have salad for one meal and cooked vegetables at the other meal. I start to get constipated if I don't have cooked vegetables. I stay strict SCD. At restaurants I'll ask for sauce on the side or salad dressing on the side.

How has your family reacted to the SCD?

When the family eats, I'll make a side of rice or a side of pasta for anyone who wants it, but the rest is SCD.

At one point my daughter picked up some bad water bacteria thing which they couldn't treat so she went on SCD at my encouragement. She was on antibiotics and stuff and couldn't really beat it. She was on SCD for a year and got a lot better. Now she's eased off and eats almost anything but she's very aware of her body. She can't eat too many grains. One piece of bread a day, a little rice. If she's not feeling right, she'll go back to the SCD for a week.

She knows how to regulate it.

Yes. She's really pleased. She makes vegetbles the centerpiece of what she eats rather than grains.

What has been the feedback from the SCD New England list?

It's been good. I have mentored some people off list, e-mailing back and forth for personal questions. Many people appreciate it.

What advice you would give someone thinking about the diet?

Do it. Be serious. Be strict. Of the people who don't have a clear diagnosis, they still want to take a supplement that may be out of the diet, thinking it'll be good for them.

I thought that too. But trust me, take three months and don't take anything off of the SCD. Do this very strictly.

I'm big on telling people that 3 months is better than 1 month.

Because that was your experience.

That was my experience. And maybe you're only going to eat 7 things in the beginning but get over that. Because if it works for you, you'll be able to eat a wider variety of things.

It's also important to to tune into your personal body and what works for you. There may be SCD legal foods may not work for you. And that's OK because there are plenty more that you can use. Don't try to push the envelope.

The funny thing is that I've never eaten junk food and grown much of own food since 1970. Eating whole foods, eating organic. That was part of the mystery of why I had so many problems. In a way SCD was easy for me b/c I always made my own salad dressings or soup or whatever. Another thing I feel I do to help other people is to mentor them with their cooking.

What kind of advice do you give them?

Well, I tell them that you don't need to make a lot of fancy recipes. Some people feel that it's going to be really boring if they don't get everyone's cookbook and cook everything. That's fine if you love to cook.

But if you don't like to cook, learn to make a stir fry, learn how to make a soup. Learn how to make a hamburger or a piece of chicken. Don't worry about complicated recipes. Learn to make salad and salad dressing. Simple.

With your former profession as a registered nurse and your SCD experience, do you ever do any health counseling?

I would love to do that. In town we recently started a time bank exchange where people don't collect money for services but collect time.

I just went over to a woman's house yesterday, spending two hours with a woman in her kitchen, helping her how to cook vegetables and soup. She didn't understand cooking and needed help getting started.

I talk about this diet every chance I get. I've gone back to my acupuncturist and other alternative health doctors and given them a copy of Breaking the Vicious Cycle. I've told them, "Read this. Recommend it to your clients. If anyone has questions, call me."

I'm happy to do it because it's been such a life saver.

category: scd interview | permalink | digg this!

NEW SCD COOKBOOK FROM THE GRAIN-FREE GOURMETS!

Wednesday, March 5, 2008

This week Jodi Bager and Jenny Lass released their new specific carbohydrate diet cookbook: Everyday Grain-Free Gourmet: Breakfast, Lunch, and Dinner!

To make this cookbook, Jodi & Jenny combined their expert cooking skills with personal understanding of how to cook when working with serious digestive ailments. (Jodi and Jenny had been diagnosed with ulcerative colitis & celiac disease, respectively).

This is an important addition to the collection of SCD cookbooks! (I placed my order today:)

Also, their website includes more information about the book as well as an FAQ section.

category: recipe book | permalink | digg this!

BIOLOGIC SUPERBOWL, REMICADE AND CHILDREN: CANADA BANS, US APPROVES

Sunday, March 2, 2008

(note: Roger and Tony are fictional characters but the information they share is real)

Please welcome back Roger Seco (RS) and Tony Ventris (TV). This is their second segment on inflammatory bowel disease marketing. Not knowing what to do since the superbowl ended, they've decided to turn some of their free time toward watching the drug market for gut problems.

Roger, Tony, for this segment, you were going to tell us about a recent Lancet article.

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RS: There's been a change in plan. We're going to delay our look at the Lancet to do a quick segment on the take-no-prisoners spirit of Remicade's marketing team.

TV: Once they decide to do something, they go for it. Their tactics aren't for the faint of heart. Back in 2005, they applied in the US & Candada to have Remicade approved for children.

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RS: The decisions came down a year later. Let's look at what Health Canada (our neighbor's FDA) said:

> REMICADE® is not authorized in Canada for use in children.

> A rare form of cancer (hepatosplenic T-cell lymphoma), a lymphoma that affects the liver and spleen, has been reported in children and young adults taking REMICADE® for Crohn's disease.

(note: Hepatosplenic T-cell lymphoma is an extremely rare cancer, with only 150 cases reported worldwide since the disease was first recognized in the early 1990's. The cancer is aggressive and most patients die within 2 years of diagnosis.)

> A total of six (6) cases have been reported, with five cases resulting in death. Patients had been receiving REMICADE® for up to 4 years.

source: Health Canada Safety Information (pdf), July 2006

TV: So Canada banned Remicade for children because of the risk. That's a shame, a lot of lost revenue.

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RS: The Remicade team was feeling hurt on that one. However, weeks before they had a big win in the US. In May 2006, the FDA approved Remicade for children.

TV: What did the FDA say about the cancer risk?

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RS: When asked about potential risks, Dr. Steven Galson, director of the FDA's Center for Drug Evaluation, said:

"[The] FDA continues to actively and carefully monitor the safety experience with Remicade and similar therapies in an effort to maximize their very real benefits yet limit, to the degree possible, the potential for very serious toxicities"

source: FDA Approves Remicade For Crohn's Disease in Children, Wall Street Journal, May 19, 2006

TV: (chuckling) That takes guts, to ignore the children's safety. Galson sounds like part of the marketing team.

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RS: Actually, Galson was called out by Congress in June 2007 for failing to disclose his meetings with pharmaceutical representatives. As head of the FDA, he's required to keep his appointment calendar public--in order to avoid confilict of interest.

TV: So what was on his calendar?

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RS: From July 2005 to June 2007, Galson's calendar showed no meetings, not a single meeting with anyone.

source: 2 top FDA officials failed requirement to publicize meetings, USA Today, June 30, 2007.

TV: So Galson probably met with lots of pharma reps. Kudos. A man has to watch our for #1. He'll probably be able to land a good job after his government service. What's he doing now, after no appointments for two years?

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RS: He was promoted to Surgeon General, a prestigious post as America's "Chief Health Educator."

TV: Nice.

So to sum up our segment: Remicade's marketing team lost in Canada--the government deemed the drug too dangerous for children. However, with the help of an FDA official who didn't do his job, the drug was approved in the US. That's a big win for Remicade.

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RS: Not to sound soft, but what about the kids?

TV: Some doctors across the ocean have posted warnings, but who's listening to some doctors in Finland?

from: Severe adverse reactions to Infliximab therapy are common in young children with inflammatory bowel disease

Since 2000 we have introduced 141 Infliximab infusions to 23 children with severe inflammatory bowel disease. A total of seven severe adverse reactions occurred in 26% (6 of 23) of the children. Four reactions were acute (anaphylaxis n = 2; allergic reaction n = 2) and 3/4 of these children were younger than 10 years of age. Two children developed an abscess and one child had septicaemia and brain lesions related to progressive multifocal leucoencephalopathy. [boldface added]

source: Severe adverse reactions to Infliximab therapy are common in young children with inflammatory bowel disease, Acta Paediatrica, Volume 96, Issue 1, Page 128-130, January 2007

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RS: Progressive Multifocal Leucoencephalopathy. PML. That's funny. The FDA pulled Tysabri from the market for PML. Remicade's simply off the FDA radar.

TV: Right That article came from a small country--Finland. No doctor will have time to read that, much less the FDA.

OK! Next week, well cover the Lancet article--and hand out an MVPP award - "Most Valuable Pharma Physician" award.

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RS: Good night and good health!

categories: biologic superbowl , remicade | permalink | digg this!

NEW TYSABRI WARNING: LIVER FAILURE

Thursday, February 28, 2008

Barely two months after being approved for Crohn's disease, the news for Tysabri continues to worsen. Three weeks ago, deadly melanomas were reported. Now the FDA has posted warnings about serious liver damage after a single dose. The manufacturers (Elan and Biogen) have sent letters directly to doctors involved in its use.

Yesterday's Washington Post carried the following news:

The controversial multiple sclerosis drug Tysabri can start causing liver damage within six days of the first dose, U.S. health officials said Wednesday.

Similarly, the Wall Street Journal also covered the story:

The letter to doctors said that the companies have received "clinically significant" reports of liver injury in patients being treated with Tysabri, and that signs of liver injury occurred as early as six days after the first dose of Tysabri. Liver injuries also occurred after multiple doses of the drug.

Given Tysabri's history, including changing it's name after causing patient deaths and being pulled from the market in 2005, it seems that the FDA should immediately revoke it's approval for Crohn's disease.

categories: antegren , tysabri | permalink | digg this!

GLIMPSE OF THE BLOGOSPHERE: AUTISM AND SCD

Wednesday, February 27, 2008

Another mom has shared her specific carbohydrate diet/autism experiences via the blogosphere. The blog helps give an idea of how the SCD can help . . . and the effort involved.

The blog doesn't sugar-coat the experience . . . or the positive benefits:)

A Tale of Two Tots

. . . The other day as I was walking out with Mickey, another mom, with a son on the spectrum, said I just can’t believe he has autism! He is so verbal, makes great eye contact and even hugs you! I said, 5 months ago he was a different kid. Biomedical and the diet has saved him. I can not tell you how good it feels that people are in disbelief that he has autism. It is at the point I really don’t have to tell anyone. He still has his quirks and there are times I am reminded that he still has autism, but for the most part he is doing so great! more

category: autism | permalink | digg this!

AUTISM CONFERENCE AND SCD PRESENTATION IN APRIL

Wednesday, February 27, 2008

From April 3rd to 7th, a Defeat Autism Now conference will be held in Cherry HIll, NJ.

Two notable people will be present, Pam Ferro and Sandra Ramachar.

On Saturday, April 5th, Pam Ferro (Hopewell Autism Initiative and Gottschall Autism Center) will be giving a presentation titled:

Gastrointestinal Pathology
and The Specific Carbohydrate Diet in ASD
Pamela J. Ferro RN, ASN
date/time: Saturday, April 5th, 11:30-12:00PM

In addition Sandra Ramachar, author of the SCD cookbook Healing Foods will be visiting from Australia to attend the conference.

category: autism | permalink | digg this!

BIOLOGIC SUPERBOWL: INFLAMMATORY BOWEL DISEASE MARKETING

Sunday, February 24, 2008

(note: Roger and Tony are fictional characters but the information they share is real)

Please welcome Roger Seco (RS) and Tony Ventris (TV). They will be assisting in segments on inflammatory bowel disease marketing. Not knowing what to do since the superbowl ended, they've decided to turn some of their free time toward watching the drug market for gut problems.

Roger, Tony, tell us what you've seen.

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RS: There's a battle ranging out there, everyone's fighting hard, trying to get a piece of the action. It's a potential gold mine. Remicade set the standard. They showed that every person out there with Crohn's or ulcerative colitis is potentially worth $30,000 year in treatment.

TV: Right. Every IBD patient is a mini-gold mine. The makers of Remicade, Humira, and Tysabri are wild west fighters, pulling out all stops to to stake claims. It's $30,000 for every man, woman, and child with IBD (and an intestine).

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RS: Unclaimed riches! Humira's only been out a short time and it's already generated $3.1 billion in 2007 sales--the sales include using Humira for arthritis as well as Crohn's.

TV: Gold mine! $30,000 a year, covered by insurance, covered by Medicaid. Every citizen can be put on the stuff.

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RS: Plus, there's almost no way these drugs are going generic.

TV: They're too complicated. No pill-popping here. With the injections and medical oversight needed for these treatments--the checks for tuberculosis and checks for injection reactions--the generic companies won't be taking this on any time soon--probably never.

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RS: But do these drugs work?

TV: They all have the FDA's black box warning. This is the FDA's strongest warning. These drugs suppress your immune system and in bad circumstances, they can kill you fast.

black box warnings: Remicade (Infliximab), Humira (Adalimumab), Tysabri (Natalizumab)

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RS: But can't most drugs kill you?

TV: All drugs have some side effects but not many get the black box warning--in the case of the biologic drugs for Crohn's, they can suddenly turn deadly.

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RS: But back to my question. Do these drugs work?

TV: They seem to help about half the people with IBD. After a year, Remicade stops working for 50% of the people. Short term, you'll get some relief. Long term, your body will be hammered.

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RS: So these marketers have their work cut out.

TV: These drugs are unbelievably expensive and potentially deadly--but they're selling fast.

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RS: In a way, these marketers are mavericks, real heroes in their ability to shape public and medical opinion.

TV: We haven't seen work this ground-breaking since Eddie Bernays.

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RS: Wow! They're that good.

RS: Next time we'll talk about Remicade's big win in last week's Lancet article. Their marketers are magicians: they made a $30,000 black box drug look better than a $4 drug with no black-box warning.

categories: antegren , biologic superbowl , humira , ibd marketing , remicade , tysabri | permalink | digg this!

LANCET STUDY: PROBIOTICS AND PANCREATITIS

Tuesday, February 19, 2008

Today's New York Times reported on a Lancet study where probiotics proved fatal when used for pancreatitis. However, the story failed to bring up the question: which probiotics were used?

Not all probiotics are necessarily helpful--investigations into the ideal mix of gut bacteria is still in its infancy.

> Which of the 400 species* of microbes in the adult human intestine are "good"? Most probiotic studies look at different strains therefore studies are hard to compare.

> For probiotics, what if you deliver the "good bacteria" to the wrong place? The small intestine is prone to bacterial overgrowth--even if it's "good" bacteria. (The large intestine has approximately 10¹¹ organisms per gram of content (colon) but the small intestine contains only 10^0–2 organisms per gram of content*)

> In severe pancreatis, studies have shown small intestine bacterial overgrowth (SIBO) to positively correlate with the severity of the pancreatitis*.

> Could the Lancet study's commercial probiotic, **Ecologic 641, have exacerbated SIBO in the pancreatitis patients?

Given that the probiotic mix contained two strains of bifidus and that bifidus may overgrow in the small intestine, this is entirely possible.

Notes:
* source: Alterations in intestinal microbial flora and human disease, Current Opinion in Gastroenterology, Volume 24(1), January 2008, p 11–16

** Ecologic 641 contains Lactobacillus acidophilus, Lactobacillus casei, Lactobacillus salivarius, Lactococcus lactis, Bifidobacterium bifidum, and Bifidobacterium lactis.

categories: med. journals , supplements | permalink | digg this!

A YEAR WITHOUT BREAD: MOTHER AND DAUGHTER FOLLOW-UP

Tuesday, February 19, 2008

Several posts have mentioned Beth and her daughter Amy--Amy started the specific carbohydrate diet for Crohn's disease and Beth also followed the diet to give her support.

Although Amy has "thrived" on the diet, tapering off of medication and having a healthy baby, Beth's experience has been mixed. Below is an excerpt from Beth's recent blog post, A Year Without Bread... sort of:

During the year, while my daughter continued to feel better and better, I noticed improvement in several nagging health issues. My osteoarthritis pain improved, my rosacea improved, and a small anal tear that had annoyed me off and on for years cleared up. Not to mention that chronic case of intestinal gas the size of the state of Michigan... was reduced to more like Rhode Island. Seemed like the SCD was the perfect diet for me!

But it has not been all smooth sailing. . . (continued)

category: notes | permalink | digg this!

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