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Crohn's Disease Forum » Diet, Fitness, and Supplements » SCD and Paleo Diets » Can SCD possibly work this instantly?


03-11-2014, 03:47 PM   #1
lbligh
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Can SCD possibly work this instantly?

My 13-year-old daughter was diagnosed with Crohn's in December (via endoscopy, MRI, biopsies, and bloodwork). She is taking Pentasa and we are tapering down the Prednisone, currently at 20 mg daily. Also taking a couple of herbal TNF-alpha inhibitors -- cat's claw and wormwood. And some vitamins.

This past Friday, four days ago, her temperature was 101.3 and I let her go to school because the doctor said not to fixate on the temperature, go by how she feels. Namely, well enough to go to school, but listless, stomach-achey, and just not her previous self.

That night we started the Specific Carbohydrate Diet, despite considerable skepticism. The doctor has been pushing us to start 6MP and from what we have read, we didn't want to.

She was better on Saturday. A lot better.

She seemed absolutely normal by Sunday.

Monday morning she RAN down the street to wait for the school bus, and when she came home she said "I'm going out on my bike," and did.

We are flabbergasted.
03-11-2014, 06:53 PM   #2
kel
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I believe you answered your own question. If the only thing that changed was diet it's probably a good guess the improvement is due (in part or in whole) to diet.
03-20-2014, 10:09 AM   #3
lbligh
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It's been fourteen days now and still no fever (first time since October). Tomorrow we will have blood test results and I am eager to see how the inflammatory markers will look.
03-20-2014, 11:06 AM   #4
Too Many Bum Steers
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That's awesome!
03-20-2014, 11:08 AM   #5
kel
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It might take longer for the markers to come down even though the symptoms have improved. Keep it up.
03-20-2014, 01:46 PM   #6
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Please keep us updated on this. We're just beginning this journey, haven't made dietary changes yet (my son is 10) but have an appoinment with a nutritionist that specializes in IBD. We'd like to try to avoid medications for as long as we can. How is she handling the dietary changes? I know diets are so hard to follow, especially for kids. Also, are there any side effects to the cat's claw and wormwood? I've never heard of them but will look them up.
03-20-2014, 01:56 PM   #7
lbligh
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MamaHenn, we don't really know if the cat's claw and wormwood are having any effect, but we are afraid to change anything, our daughter is doing so well! The current diet is actually much less restrictive than what we had been feeding her before, so it seems luxurious to her, not to mention the joy of not feeling sick all the time.

Here's some information about cat's claw and wormwood that my husband dug up from the scholarly literature (I'm just cutting-and-pasting it from an e-mail we sent a friend):

- - -

Cat's Claw contains a lot of different biologically active chemicals, some of which stimulate the immune system. You don't want that. You want just the water extract of the plant -- basically, the Vinicol is Cat's Claw tea, condensed. This way, it's purely an immune suppressant. A controlled clinical trial of this extract showed good effectiveness at controlling arthritis pain. http://www.ncbi.nlm.nih.gov/pubmed/11603848

Wormwood refers to many different species with vastly different properties. We want artemisia absinthium, absinthe wormwood. But one chemical in that -- thujone -- is reported to be neurotoxic in (very) high doses. So you want an extract that has been tested and shown to have low levels of thujone. SedaCrohn has. More importantly, it was
shown to be very effective in weaning patients off steroids, in a
classic double-blind placebo controlled study. I think the only reason
this is not used more often is that it was published by individuals who
were not recognized experts, in a journal that is not a mainstream
gastroenterology journal, and they suggested a mechanism that is not
considered a mainstream explanation of what causes Crohn's. All that is
irrelevant, as far as I'm concerned. Unless these guys are just plain
lying, this is very nearly the most effective treatment I have ever seen documented. Briefly, they started with a bunch of Crohn's patients on steroids and other meds, and tried to taper the steroids. In the placebo group, only 20% of persons effectively tapered off steroids. In the treatment group, 90% successfully tapered off steroids. And 65% showed complete remission of symptoms. For what it's worth, they've also explored the mechanism of action in mice. But the key finding here is in people:
http://www.ncbi.nlm.nih.gov/pubmed/19962291
http://www.ncbi.nlm.nih.gov/pubmed/17240130

A warning on wormwood (artemesia abysynthium). It's a mood elevator. So
if you take it, or give it to your son, just be aware of that aspect of it.
03-22-2014, 08:45 AM   #8
lbligh
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Drum roll, please!

Just got our daughter's blood test results. The inflammatory markers are now normal. More than that, they are LOW NORMAL. Iron and Vitamin D are good.

This is an astounding result. She has only been on SCD for two weeks.

If I were someone hawking an expensive medicine or supplement, you would totally get me banned from the forum as a spammer, this result is so unbelievable.

We are going to phase out all the herbal supplements that are anti-inflammatories (cat's claw, tart cherry juice, and wormwood). Still tapering Prednisone, down to 10 mg per day and reducing by 5 mg per week. Will keep you informed.
03-22-2014, 11:14 AM   #9
nogutsnoglory
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I haven't been on SCD but I find from experience and it seems to not be uncommon that regardless of the diet chosen the body seems to respond quickly to the radical change for better or worse. I hope this means she will continue to feel well and that food irritants have been removed due to the protocols of the diet.
03-22-2014, 02:04 PM   #10
kel
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Excellent work with the diet. I would not stop all the supps at once though.
03-23-2014, 12:24 PM   #11
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That is wonderful news! I'm going to try the SCD because nothing seems to help at this point. I hope your daughter's health continues to improve.
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03-26-2014, 10:52 AM   #12
Too Many Bum Steers
Banned
Drum roll, please!

Just got our daughter's blood test results. The inflammatory markers are now normal. More than that, they are LOW NORMAL. Iron and Vitamin D are good.

This is an astounding result. She has only been on SCD for two weeks.

If I were someone hawking an expensive medicine or supplement, you would totally get me banned from the forum as a spammer, this result is so unbelievable.

We are going to phase out all the herbal supplements that are anti-inflammatories (cat's claw, tart cherry juice, and wormwood). Still tapering Prednisone, down to 10 mg per day and reducing by 5 mg per week. Will keep you informed.
Thanks for letting us know these wonderful results! Glad she's feeling better!
04-30-2014, 08:33 PM   #13
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Your daughter's response to SCD is very similar to my own. I followed the Intro Diet without any deviation. The "D" did not stop until Day 5; however, it has not returned! That was February 9, 2014. I did exactly as the book suggests, slowly introducing one pureed vegetable every three days. Doing it this way was a great opportunity to discover what my body reacts to--and there were some strange reactions. Initially I couldn't even take one mouthful of mashed bananas. Now, however, I eat them every single day but it wasn't until after three weeks on the diet. I also slowly re-introduced coffee (my passion!) and was thrilled to find out it doesn't bother my system one bit. One thing is for sure…one size does NOT fit all. Each of our bodies is unique and it is up to us to determine what works. I take a variety of supplements and swear by Oil of Oregano and Prescript-Alert Probiotics. Won't work for everyone but hang in there and don't give up no matter how weary you may feel. It's taken me 13 years!!! I will say it is essential that if you plan to follow SCD, you do so without deviation--I speak from experience!
04-30-2014, 09:11 PM   #14
7vNH
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When I was a teenager I had mononucleosis real bad and I got put on prednisone. It took a few days, but then it was like a miracle! I went from barely being able to get out of bed to able to run a mile. It sounds like the timing of the SCD aligns with the positive symptoms, but I'd wait until the prednisone is out of the picture to celebrate fully; its powerful stuff and you have got to figure its part of the equation.
05-01-2014, 04:25 AM   #15
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How'd you go about meal planning? Do you have a pretty set routine of meals she has? Something others could use just adjust quantity?
05-01-2014, 07:03 AM   #16
lbligh
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7vNH, we've been done with the Prednisone for several weeks now. Everything is still going very well.

Tjbandek, meal planning is definitely different now than before SCD, because we eat so many fresh fruits and vegetables that we have to shop more often. I spend a ton of time reading online recipes. After I have a few more months of SCD eating under our belts, I hope I will have enough tried-and-true recipes that I won't need to do that anymore.

For breakfast we have omelettes with lots of vegetables and cheese, with fruit on the side. Gwaltney makes a SCD-legal bacon so our daughter usually has some of that too.

For her school lunch I pack some lettuce wraps made from meat (either homecooked or a particular kind from Wegman's that is SCD-legal) and cheese, usually with a bit of mustard. Also some nuts, some fruit, sometimes some pork rinds, and macaroons or another SCD-legal kind of cookie. I try to make sure there's something sweet and something crunchy, and lots of variety. The better the home-packed lunch, the less chance she will give in to temptation at school. For a drink, it's either water or a SCD-legal juice that I add ice cubes to, so it will be slightly diluted and still cold at lunch time.

She always has a Larabar in her school backpack if she is staying after school for an activity. Many of the Larabar flavors are SCD-legal. I think her favorites are the carrot cake, cherry pie, and coconut cream. Having a store-bought snack that looks just like the power bars that are so popular nowadays, makes her feel more normal, when everyone else is sitting around having their snacks. Some commercial fruit leathers work for this also.

Our dinners are as normal as I can possibly make them. Some kind of protein main dish, which is fish about twice a week. If it's something that has a sauce, I generally pair it with cauliflower "rice." At least two vegetables, usually steamed but sometimes sauteed. Sometimes a salad. More fruit. I like a lot of different colors on a plate.

I make a SCD-legal dessert a few times a week. Some successes, some failures. The custard made with coconut milk was good, the yogurt custard was less so. Lemon bars with a nut-based crust were good. Most baked goods with a lot of coconut flour were pretty awful.

Most nights I make a fruit smoothie with homemade SCD yogurt. I try to vary the fruit.

Some sample dinner main dishes from the past week or so:

Fish (frozen cod) sauteed in butter and olive oil, with Indian spices

Chicken stew made in the crock pot, cooked with celery, carrots, onions, and a little tomato

Chicken Tikka Masala from a fantastic recipe I found on Comfy Belly's website

Cheeseburgers (no buns -- there are recipes, but not anything that isn't a lot worse than having no bun)

Shrimp with homemade cocktail sauce (just homemade SCD ketchup with a little horseradish -- it was great)
05-17-2014, 02:29 AM   #17
Tantija
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It's been fourteen days now and still no fever (first time since October). Tomorrow we will have blood test results and I am eager to see how the inflammatory markers will look.
Hi, my inflammatory markers has improved in 3 weeks time. Maybe they have improved earlier but I had blood test 3 weeks after I started SCD diet. I am on the strict diet since December 2011 and my health has dramatically improved but in my opinion you have to stick to the strict diet or do not bother at all. It says in the book that after few months of diet you will suddenly feel worse but it will pass just stick to the diet. I did not have such a thing at all. Good luck!
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Got ill in 1997
Diagnosed in 2006 Crohn's of ileum and small intestines
Operation: September 2006 removed ileum and part of small intestine 35sm in total
SCD Diet since December 2011
B12 one injection in 3 month
Vitamin D, Zinc
Medication free
05-17-2014, 02:38 AM   #18
Tantija
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Cat's Claw contains a lot of different biologically active chemicals, some of which stimulate the immune system. You don't want that. You want just the water extract of the plant -- basically, the Vinicol is Cat's Claw tea, condensed. This way, it's purely an immune suppressant.
Wormwood refers to many different species with vastly different properties. We want artemisia absinthium, absinthe wormwood. But one chemical in that -- thujone -- is reported to be neurotoxic in (very) high doses. So you want an extract that has been tested and shown to have low levels of thujone.

***
A warning on wormwood (artemesia abysynthium). It's a mood elevator. So
if you take it, or give it to your son, just be aware of that aspect of it.
Wow! These are quite strong plants! I wonder what else they could affect in your children body. In my understanding once you remove sugar and starch there is no need of your immune system fighting bacteria what grows because of the sugar and starch digestion so there is no need to suppress it any longer.
05-17-2014, 02:44 AM   #19
Tantija
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I haven't been on SCD but I find from experience and it seems to not be uncommon that regardless of the diet chosen the body seems to respond quickly to the radical change for better or worse. I hope this means she will continue to feel well and that food irritants have been removed due to the protocols of the diet.
Hi. I am on the diet since December 2011 and it works perfect. All you need to do is to follow it strictly. For me this is just a miracle! I was suffering since 1997, I had an operation but I believe if I would've known about this diet before there will be no need in operation at all.
05-17-2014, 02:53 AM   #20
Tantija
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7vNH, we've been done with the Prednisone for several weeks now. Everything is still going very well.

Tjbandek, meal planning is definitely different now than before SCD, because we eat so many fresh fruits and vegetables that we have to shop more often.
Hi, I am glad she could have o lot of fruits and veg. Unfortunately I cannot, it makes my D worse. I guess this is because I have only 195 sm of small intestines left and you need a length to digest high fiber veg and fruits.
05-17-2014, 08:10 AM   #21
lbligh
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Tantija, we are definitely hoping to avoid the intestinal surgeries that so many Crohn's patients seem to need!

At three months and a week, my daughter is only taking Pentasa, Vitamin D3, and Zinc. Growing and gaining weight. We are discovering more and more good SCD recipes to keep our meals and snacks interesting.
05-17-2014, 03:08 PM   #22
Tantija
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Tantija, we are definitely hoping to avoid the intestinal surgeries that so many Crohn's patients seem to need!

At three months and a week, my daughter is only taking Pentasa, Vitamin D3, and Zinc. Growing and gaining weight. We are discovering more and more good SCD recipes to keep our meals and snacks interesting.
I am very happy for her! I think it is even more hard for a child. All the best!
05-18-2014, 01:56 AM   #23
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Ibligh, if I remember rightly from other posts of yours, you didn't do the full intro to scd? So did you start right away with the FULL diet, or did you modify it somehow and gradually expand? It seems very hard to start the diet with the intro, as it is a very long time before you are able to get enough calories. So I'm interested to hear how you dealt with this!
05-18-2014, 08:37 AM   #24
lbligh
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Everyone's starting place is going to be different!

In our case, we had been keeping a food diary with the intent of eliminating foods that seemed to bother our daughter, who had been diagnosed with Crohn's and was unable to taper successfully off Prednisone, and even with the steroid she still had fevers and stomach aches, and was not gaining any weight back.

Over the course of months we eliminated so many foods that it seemed she could hardly eat anything. And she was still sick.

The doctor was really pushing 6MP, but the more we read about it in the scholarly literature, the more skeptical we were about whether it would help much if at all, and we were concerned about the side effects.

My husband started looking at the various diet books that claimed to help people with IBD. He'd go to Amazon, and look at the comments -- this is because mainstream medicine clearly had little to offer, so it was time to pay attention to the "anecdotal" evidence. We were desperate.

He told me that after about the fiftieth time he saw accounts of "miracle" and "godsend" he decided it was worth a try. So SCD was our "Hail Mary Pass."

At this point, our daughter hadn't had any wheat for weeks, nor any nuts, or much fruit because the doctor kept talking about "low residue," so just about all she was consuming was rice, eggs, broth, and Ensure. And boy was she sick of it. Under those circumstances, you can see that starting SCD was like stepping up to a wonderful banquet!

We decided not to do the "intro" because although the book didn't specifically say so, it seemed oriented toward people who had typical Crohn's symptoms like diarrhea. We just went straight into the regular SCD, and within a couple of days, we knew it was working. No more fevers or stomach aches, bloodwork back to normal, she's been growing and gaining and full of energy. Seems like "miracle" and "godsend" to us!
05-18-2014, 08:45 AM   #25
helena101
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Thanks for the response Ibligh! So if I understand correctly you included yoghurt, cheese, nuts and fruit straight away? I am so pleased she is doing so well! I think the scd is a lovely diet if you can tolerate all or most of the foods "allowed", but it can become quite difficult and limited if you have to exclude dairy or nuts for example. I wish you continued success!
05-18-2014, 09:57 AM   #26
lbligh
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Yes, that's what we did. The yogurt and nuts had to wait a couple of days because we did not have any in the house (and of course I had to make the SCD yogurt, and my first batch was inedible, but I can make good yogurt now).
05-18-2014, 04:01 PM   #27
Tantija
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Yes, that's what we did. The yogurt and nuts had to wait a couple of days because we did not have any in the house (and of course I had to make the SCD yogurt, and my first batch was inedible, but I can make good yogurt now).
I also did not start from intro but from regular SCD and beleive that yogurt is fantastic healing product in the diet, especially if you have not had any dairy for many years.
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