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Anyone tried SCD diet???

I am currently on Measasal 4 tabs x 3 tiimes per day, Imuran 100mg per day & Salifalk enemas every day. My doctor has talked about possible surgery in the next few months as my UC has not been controlled for nearly 3 years.

I have recently come across a book by Elaine Gottschall called "Breaking the vicious Cycle" It talks about a Specific Carb Diet (gluten free, grain free, sugar free & Lactose free). I have googled a lot of information about it and it really does sound like it has helped many people and also many people are completey drug free????. Not sure how disaplined I would be though.
Anyone actually following this diet and what results are you getting?
 
Hello Jaffa,

There is no scientific evidence that radical diets have any impact on the outcome of IBD, but there is certainly a lot of anecdotal evidence. There is also no doubt in my mind the placebo effect can be extremely potent and powerful, but I know someone personally who has had great results with the paleo diet, or so he tells me.

My guess is that any restrictive diet will have a net positive effect on your health simply because you will be eating better and providing your body with healthier sources of energy (proteins and healthy fats) than you are currently.

I will always remain skeptic towards books that suggest a diet will change your life and make you go drug free. Salofalk, an anti-inflammatory drug that targets specific receptor proteins unique to your bowel, and Imuran, an immunosuppresive drug, both play a vital role in keeping your IBD in check. Both work together via two completely different biological cascades and no amount of food combination will replace those effects. Not with the same efficiency.

That is not to say that a change in diet cannot help, though. Ultimately, the easiest way to verify whether the diet would work for you is to try it yourself for a couple of weeks. If you keep a daily journal you can keep tabs on progress and see if it did make an improvement!

Good luck :)
 

KWalker

Moderator
Hello Jaffa,There is no scientific evidence that radical diets have any impact on the outcome of IBD
There is evidence. The author of the book conducted the study for her PhD certificate. If you read the book "Breaking the Viscous Cycle" it talks all about the science behind the diet.
 
There is evidence. The author of the book conducted the study for her PhD certificate. If you read the book "Breaking the Viscous Cycle" it talks all about the science behind the diet.
No peer reviewed double blind study has been performed to prove the effectiveness of the diet vs standard therapy specifically for IBD. If you have one, please forward it to me because I would love to read it.

I have years of biochemistry studies in experience, including food chemistry courses, and have read an extensive amount of articles and textbooks on the science of food as well. If diets were the key to cure a broken immune system, it would be irrefutably clear by now.

A paleo diet certainly has its share of benefits, but if people are led to believe they will be able to let go of immunotherapy because they stop eating grains and dairy, I find this very misleading.

YMMV.
 

KWalker

Moderator
Nobody is telling anybody to stop medicine and go on the diet. We/They are saying that it can certainly make conditions easier for an individual and as a result ween off the stronger meds.

Also, as I said above the author of the book conducted this research for her PhD. That means you do scholarly research reporting your method, results, you name it. The exact same as any other scholarly research article.

Nobody is saying that diet is the cure, because we all know there is no cure currently. With that being said, MANY people have significant results. It isn't a coincidence. I'm just going to assume you've never attempted the diet yourself because cutting out grains and dairy isn't even half of it.


I don't want to get off topic because that's not what the original poster wasn't looking for but we have to respect each other's opinions when they come forward about finding information instead of shutting it down right away saying that it won't make much difference other than physical symptoms.
 
I certainly respect your opinion and I hope you respect mine. Disagreeing is not a lack of respect. If I were the original poster, I would welcome any point of view so long they are anchored in reason. The more information the merrier, and then people can make more informed decisions.

I did try the paleo diet for three weeks with no significant change or results, but I ate very healthy and was already in good shape before my diagnosis, so this may have come into play.

Just because she has a phD and a book does not mean she is an expert. Quantum physics is regarded as science and it's all a bunch of professors arguing about the interpretation of mathematical equations. Imagine that... arguing interpretations of equations... there's no empirical value to it at all! Not all science is equal. Ever since the discovery of the DNA there's been such leaps and advancements in our understanding of the human body that coupled with modern imagery, medicine can afford to be based solely on empirical evidence in 2013.

Consider also that the author is in the business of selling books. She writes them for profit. The only reason to write these books is to build a brand and make a name for yourself. Books like these are only meant for consumers. The scientific community does not rely on these channels to get its information. Also, anyone can write a book in Microsoft Word and self-publish it on Amazon today. Writing a book is no longer an immediate mark of credibility.

I am not shutting down the paleo diet. It does have benefits. How could it not, it's a super healthy diet! But it won't replace Remicade, it won't replace immunotherapy and it certainly won't fix your mutated genes. The OP specifically asked whether it was true the paleo diet had made people drug free. In my opinion, such claims are bogus claims meant to advertise and hype the book. Such claims could lead to false hope.

Thankfully, we all have free will and ultimately the choice of which diet to follow or what program to believe in is ours :)
 

KWalker

Moderator
Of course I respect your opinion! I like differing arguments because if everybody thought the same we would never learn anything. I do agree that books like that are created for profit, but I don't think it would still be on the market today if people weren't buying it.

We have opposite views on diet vs. Remicade (for example) and that's okay. Just like diet doesn't work for everybody, the same can be said for Remicade and I have been on Remicade myself and it did not work. And just like there are many people on biologics and immunosuppresors, there are also those of us doing well on the diet alone-like myself and Charleigh's son.

It really is tough because like you said with the false hope, it's hard to stress the importance of proper treatment sometimes so there will always be people that just jump right into the first choice without exploring other options. Diet might not work for everyone so some people could be swimming with sharks by going off their meds and trying diet alone. It's all about a balance between the two because saying you're on Remicade for treatment is no justification for still eating like crap. Do you know what I mean? I think it's different for you because you said you already ate healthy, but there are many people that do not.
 
Here is my response that I posted to your thread in the diet forum....

If you go to the diet forum, you will find more info on SCD. KWalker has been tracking his progress in a thread, I am tracking my son's progress in a thread called (Incredible E and SCD), and we have a support thread for SCD / Paleo / Gaps.

E is on no medication and it has been nothing short of a miracle. E is up by 10 pounds, he is down to one solid stool per day, no cramps, etc. His color is returning, his energy is steadily increasing, etc.

The book is written for UC, Crohn's, and Celiacs.

It is a tough diet. No one on a standard diet can remove grains, sugar, dairy, etc and not struggle at first. With that said, E is only eleven and he will tell you in a heartbeat that it is completely worth it. He is not even tempted to cheat because of the improvement in how he feels.

It got worse before it got better. We did have the typical bacterial "die off" period where E dropped a little weight and felt flu like (this happens with any radical diet change), but then it has been all positive improvement since.

I highly suggest you to read the book. I remember highlighting in it because it just made so much sense. It was an aha moment for me.

E started the diet in November.
 
I wanted to add that I am not suggesting that anyone go off of their meds. Our choice is our choice. Some find great improvement with diet even if they remain on meds.
 
Do you know what I mean?
Yes I do, and I even agree with you :) You really must not take my skepticism as an attack on the idea or the diet.

The reasoning behind the paleo diet is sound but it is not completely anchored in empirical science that is verifiable in a lab, which is what makes it hard for me to cling to it. In medical school, I remember once spending three weeks in a lab where the researcher were studying a particular genetic disease that had a high prevalence in this particular geographical region. I remember seeing a tumor literally shrink before my eyes under a microscope when it was administered tumor necrosis factor (TNF). When you're lucky to experience that sight, it becomes more difficult to accept anything other that hard empirical science.

And yet, science can be as random as it gets. The best example of this is viagra. Sildenafil citrate was being developed as a vasodilatator to treat vascular diseases. It was only in the animal trial phase that the researchers noticed all their male rats were erect. Imagine this conversation:

"Hey Bob, did you notice all the males have a hard-on?"
"Maybe they partied last night?"

That is how viagra was invented. A complete and total accident. If people knew just how often accidents and random testings have led to amazing discoveries, they might be a little scared. But the truth of the matter is, most discoveries in this World are accidents, and what matters is if you can replicate or prove that discovery in a controlled setting.

In the case of the paleo diet, the idea that we haven't yet evolved enough to digest grain and dairy products is misguided, but not inaccurate. For instance, most of the world is actually lactose intolerant. A high percentage of Asian don't even produce the enzyme to digest it.

The issue I have with these extremely restrictive (almost punitive) diet is that they have an "all or nothing" approach. I have zero doubt that most people with UC would see their condition improve if they improved their diet. Our problem in the western world is not that we eat grain or dairy products, it's that we eat wayyyyyy too much of it.

If I were in the OP's position, I would try the paleo diet because there are no health risks involved and really, who is it gonna hurt? But there's no need to remove grain and dairy product from the diet overnight. Significantly reducing the intake at first would already be a major step in the right direction :)

YMMV.
 
Nobody is telling anybody to stop medicine and go on the diet.
No? Then can I be first? After all, my husband is currently suffering from a rare, and potentially deadly skin condition, due to an adverse reaction CAUSED by his prescription medication, the necessity of his taking that medication is arguable, and may yet kill him.

I actually have mixed feelings, but we're already swimming with the sharks, so why not give diet a shot?

:
No peer reviewed double blind study has been performed to prove the effectiveness of the diet vs standard therapy specifically for IBD. If you have one, please forward it to me because I would love to read.
What I want to read is the peer reviewed, double blind study proving that the SCD and other diets, DON'T work. If you have one of those, please forward it to me. No? Gee, wonder why?

In the past week, my husband has gone to 4 different doctors, who have actually put him on 4 different diets. They have all assured him though, that he can drink beer and wine, to which my husband responds, "Really? Great! But I can tell you right now, my sponsor at AA is not going to like it!"*


(*He doesn't really go to AA nor does he have a sponsor. He just likes playing with doctors. Especially doctors who answer my questions about whether my husband can eat fish by saying, "you can tune a piano, but you can't tuna fish. Yes, one of his doctors actually said that to me.)
 
I'm very sorry about your husband.

What I want to read is the peer reviewed, double blind study proving that the SCD and other diets, DON'T work.
I'm not sure whether you are being humorous, whether you're trolling, or if you're serious due to the lack of emoticon. I assume you're joking, unless you really expect researchers to spend their careers in a lab, working to prove something doesn't work?

As you've realized not all doctors are competent and not all doctors share the same views, so it's perfectly OK to reject certain treatment options in favor of another. Your husband is the one who suffers and he has the right to choose whatever treatment he chooses. This includes refusing modern medicine in favor of dieting or other alternative medicines.

The important thing is he finds relief and the best treatment for him.
 
Hello itsme2,

If you can, do try the paleo diet and see if it helps you.

Have you considered medical cannabis? It should be pretty easy to find in New York state.
 
I'm not sure whether you are being humorous, whether you're trolling, or if you're serious due to the lack of emoticon. I assume you're joking, unless you really expect researchers to spend their careers in a lab, working to prove something doesn't work?
I'm dead serious and you just proved my point.

As a matter of fact, yes! I absolutely DO expect that if lab researchers are going to claim that that something doesn't work, they damn well have better have run the tests to prove it. I fully expect adherence to the scientific method in performing those tests, in recording the results, and in reporting their findings. Any deviation whatsoever, and it's not science.

I'm sorry, but at least in theory, scientist are supposed to be objective and free of any preconceived biases or expectations, or their entire research is tainted, rendering it virtually worthless.

Failure to perform comparative, objective scientific testing, to determine the effectiveness of traditional medications vs. the SCD, as well as other diets, indicates to me an unwillingness to learn the answer. Not very scientific, if you ask me.

If you feel this is an unreasonable expectation? You are the one who originally made the request of kwalker. If any such tests had been run, the results would have resolved the issue. Findings are findings, regardless of original intent.

As you've realized not all doctors are competent and not all doctors share the same views, so it's perfectly OK to reject certain treatment options in favor of another.
Doctors are only as good as the research they rely on, which, as you've so kindly pointed out, appears not to have performed.

Your husband is the one who suffers and he has the right to choose whatever treatment he chooses. This includes refusing modern medicine in favor of dieting or other alternative medicines.
He doesn't refuse modern medicine, because if he had, his entire body wouldn't now be covered in 2nd and 3rd degree chemical burns--a side effect of the medication he was prescribed called Stevens-Johnson syndrome.

The important thing is he finds relief and the best treatment for him.
Oh, he was being treated with steroids, which worked until they didn't. The various diets are to reduce the risk of further chemical reactions, by eliminating foods containing nickel, sodium, and other substances. It's a rare condition and this IS traditional medical treatment. I would explain his doctors' rationale, that is, if any of it made any logical sense whatsoever.

He learned to control his chronic colitis through dietary means, several years ago.
 
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As far as cannibis, my luck I would get arrested since medically not accepted in NY.sigh Does it lower inflammation or just good for pain?
In 2008 researchers found that the cannabinoid cannabidiol (CBD), found in most hemp plants in various quantity depending of strain, could bind with receptors in our body called CB2. We have millions of these receptors in our body, most of them are in our brain and in our bowel. The inflammatory cascade is modulated via the CB2 receptors, so it was finally proven in a lab how cannabis actually works. It does have both sedative properties (it's great at relieving pain) and also treats the inflammation directly. Delta9-THC, which binds with CB1 receptors, help regulate appetite and bowel movement as well. There are many more cannabinoids found in cannabis and they're not yet all understood, but there is currently sufficient empirical data to support the thesis that medical cannabis has healing properties.

Many UC or Crohn's patients consume cannabis illegally because it helps them. I understand that even in states in which cannabis is legal, it still remains illegal on a federal level for you guys in the US (the logic of which is so mindbogglingly stupid) so I understand even people in California are consuming cannabis "illegally" on a federal level. The difficulty for most people is of course finding a reliable and trustworthy source. Cannabis has changed my life (quite literally) and has made the pain associated with my pancolitis (currently flaring very badly) completely manageable.

Hopefully if the paleo diet helped you before it can help you again this time! :)
 
Thankyou everyone for all this information. It has kept me very interested in the last couple of days. So much information for and against, but I really do appreciate that you have given me this to read.
I think the SCD is definately something I need to try and see if it works for me. My UC is currently very bad with a lot of blood, mucous, D, bloating, gas etc etc.
Francis you keep mentioning the Paleo diet. I have had a quick read up about it and it seems very similar to the SCD diet. Why do you prefer the Paleo?
 
The SCD diet is basically a slightly modified paleo diet, ie. some people invented a new name for a diet that has existed for a long time to market it as new and sell more books.

Both SCD and paleo diets are based on the idea that our body has not had enough time to evolve and adapt to the refined foods we eat today and in turn, it puts a stress on our GI tract that is unwarranted or unnecessary. It's true in a sense. The biggest problem is that we eat too much refined foods, not necessarily that we do eat it.

I personally tried the paleo diet, but it had no effect. I tried it because a friend of mine who has Crohn's swears by it. The thing is, he was 120 lbs overweight when he was diagnosed and ate badly before. When I was diagnosed with UC, I was in good shape, had already fixed my bad lifestyle habits two years prior and was hitting the gym 3 times a week. Depending on what your diet is right now, you could experience good results.

My advice to you: try it. You have nothing to lose and everything to gain at this point. If it doesn't work, well at least you tried. If it helps you, you will have found some relief and that's a good thing.
 
Yes, I find your expectations completely unreasonable. The burden of proof falls on those wishing to prove things work. Not the skeptics.
Says who? Aside from the fact that the "burden of proof" only applies in courts of law, umm, the question posed by the Original Poster was "Has anyone tried the SCD Diet?" and if so, to share their results. No one asked for proof, mich less in the form of peer reviewed double-blind studies. So in reality, you went off topic, and to justify having done so, the burden of proof falls upon you.

As far as who the "skeptic" here really is? Well, if the mainstream medical and scientific communities and pharmaceutical corporations had any desire to prove their prescription medications were superior to dietary alternatives, then they would run comparative testing. My bet is they already have, but didn't obtain the results they wanted, so they didn't publish them.

If you believe they would have published the results regardless, then you are not the skeptic.

As far as "placebo effects" go? My husband suffered with chronic colitis for many years, dutifully taking his medications, and running to the hospital. While I kept begging him to at least TRY my probiotic ladened kefir. He refused for years, because he thought it was "nasty", he's lactose intolerant, and wouldn't believe that kefir is 99% lactose free.

Finally, while doubled over in pain one night, out of desperation, he tried it, more to prove me wrong, and shut me up. Instead, to his absolute shock and amazement, it worked. He's been drinking a glass of kefir every morning since, and hasn't had a single flare in years. So there was no "placebo effect" because his expectations were zero.

Of course, if you look at my history, I said all this on my very first posts on this board. Our diet is also primarily a combination of paleo/SCD, and that's something we only recently even realized. We cook everything from scratch, as organic and natural as possible. That's just how we eat.

Hey, BTW, are you aware that adverse reactions from prescription drugs are listed as the 4th and 6th leading causes of death? That's according to JAMA, the Journal of The American Medical Association, and it doesn't get more "mainstream" than that. Here's a link: http://jama.jamanetwork.com/article.aspx?articleid=187436
 
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KWalker

Moderator
The author of Breaking Viscous Cycle didn't invent the diet to make money lol. She did it because her daughter was told she needed extensive surgery so they decided to experiment with food..and it worked for her. She didn't just write a book saying to eat this this and this while avoiding this and you'll be fine. She didn't make the diet for any other purpose than for her daughter's sake and then because it worked she decided to share it.

The difference between the Paleo and the SCD diet is the foods that are allowed. For example, the paleo diet allows sweet potatoes, the SCD does not. I know there are a few others but I can't think of them off hand. Charleigh might know further, but as far as I know, SCD is just a little more strict. Some people that do SCD work towards the Paleo diet after awhile just because like I said, Paleo does allow more foods.

Some websites I would check out are foreverscd.com, nomorecrohns.com, pecanbread.com


Oh, and from someone studying science as well, researchers are always trying to falsify a theory. In fact, you can't prove a theory right, only wrong. For example, we could have a theory that all swans are white, but the second we see a black swan that theory goes out the window. To see that diets like this don't work, prove it wrong.
 
The idea that scientists should spend their time disproving somebody else's theory is as primitive as "guilty until proven innocent." It makes absolutely no logical sense. Before Remicade was approved, the pharmaceutical companies that did the R&D had to provide all their data for analysis. You can't fake the effects of TNF. It's quantifiable data. They did their due diligence. If it turns out later they hadn't, the courts will make them pay the price. Your country is filled with trigger-happy lawyers who spend their careers suing pharmaceuticals to make sure they are kept accountable. It doesn't mean all the products the pharmaceutical companies produce are useless or not needed. TNF works, plain and simple. Why would scientists suddenly want to spend time disproving a diet works? What's in it for them? All they have to do is prove the product they sell does what they say it does.

The author who wrote this book did it to help people. The publisher running the PR machine is after the profits. There is no fact checking in publishing, there is no ultimate authority that decides which books get published or not. I could write a book and say unicorn urine is the new foutain of youth, and thousands of people could buy it, and it would still appear on Amazon.

The paleo diet has existed for thousands of years. It's how many people eat naturally today, as you say. Of course it works! Nobody here is saying the paleo diet doesn't work.

My problem is when people make big irresponsible claims such as "the SCD diet will make you go drug free". It's appalling. The OP specifically asked that question. I was not off-topic. Suggesting that a diet will replace conventional therapy is a lie. It's the same thing as saying a diet would replace chemotherapy. It could replace it. You have to leave a chance for doubt or you raise hopes for nothing.

When you make claims such as "SCD diet will make you go drug free", which is something the OP read, it's saying "if you adopt my diet you will no longer need the medicine because my diet will cure you", which is nothing short of intellectual fraud.

People should try it, but they should also know EXACTLY what they're getting. Suddenly changing your diet may improve your situation by reducing your inflammation because youre putting less stress on your GI tract, but the action of TNF and what it does will not be replaced. Case in point: the diet did nothing for me, but I already ate very well.
 
The idea that scientists should spend their time disproving somebody else's theory is as primitive as "guilty until proven innocent." It makes absolutely no logical sense.
You kidding? First of all, it's your analogy that makes no logical sense, and Where it concerns MY life and MY health, I most certainly can, and do, expect that scientists should prove that their (potentially deadly) product is superior to natural alternatives, especially if they are going to claim that natural alternatives don't work.

And you are the one who came on this thread making the assertion that "there is no scientific evidence that proves that radical diets have any impact..." But of course, the only reason that scientific evidence doesn't exist, as you've so kindly pointed out, is....

Why would scientists suddenly want to spend time disproving a diet works? What's in it for them? All they have to do is prove the product they sell does what they say it does.
Yeah, they only care about their own profits, not your health, or mine either.

Of course, IF they could prove these diets didn't work, what would be in it for them would be that more people would use their products, rather than relying on natural alternatives, and they would make even more money, but only IF they could prove it. I have no doubt they've tried, but the problem is, they can't prove something that isn't true.

I could write a book and say unicorn urine is the new foutain of youth, and thousands of people could buy it, and it would still appear on Amazon.
No, because most people are perfectly aware of the fact that unicorns don't exist. However, "urine therapy" actually has been practiced for eons, and there are people who swear by it. About as plausible as consuming the venom of poisonous snakes, which is exactly what the prescription medication that is burning my husband alive, is formulated from.

And then, there's fecal transplants, which seem to be obtaining some pretty amazing results.

The paleo diet has existed for thousands of years. It's how many people eat naturally today, as you say. Of course it works! Nobody here is saying the paleo diet doesn't work.
Maybe you should go back and read your posts, because that's exactly what you have, at least, been implying.

My problem is when people make big irresponsible claims such as "the SCD diet will make you go drug free". It's appalling. The OP specifically asked that question. I was not off-topic. Suggesting that a diet will replace conventional therapy is a lie.
No, it is not a lie. Many people who follow the SCD diet are drug free. Charleigh's son is drug-free. My husband stopped taking medications for his digestive issues years ago. The medication that's killing him is for his blood pressure. Oh, did I mention that it's formulated from poisonous snake venom? Yes, I believe I did.

It's the same thing as saying a diet would replace chemotherapy. It could replace it. You have to leave a chance for doubt or you raise hopes for nothing.
You must not be aware of the fact that, depending on the type of cancer, providing it is caught in time, prior to it metastisizing, and removed completely during surgery, for the most part, chemo/radiation treatments are no recommended or performed. More people were dying from chemo and radiation treatments than they were from the cancer.

Both my parents had cancer, neither had chemo or radiation and are both alive and cancer free--and are both past the 10 year mark.

When you make claims such as "SCD diet will make you go drug free", which is something the OP read, it's saying "if you adopt my diet you will no longer need the medicine because my diet will cure you", which is nothing short of intellectual fraud.
One more time, the only med my husband is on is for his blood pressure. But everyone's body chemistry is different, and what works for one, doesn't work for all.

Case in point: the diet did nothing for me, but I already ate very well.
Try drinking kefir.

Oh, and I noted you claimed to have tried the paleo diet for 3 weeks. 3 whole weeks, huh? Do you really not know why it didn't work?
 
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Y expect that scientists should prove that their (potentially deadly) product is superior to natural alternatives, especially if they are going to claim that natural alternatives don't work.
They already have proven it. You're just not aware of it. And they're not saying the alternatives don't work. They're saying there's no conclusive proof it does work. There is a huge difference.

The inflammation associated with IBD has both internal and external origins. Reducing external causes of inflammation will help reduce the overall symptoms, but it doesn't remove the internal problem, which is our immune system is misidentifying the natural bacterial fauna of our GI tract as foreign.

For some people, if external sources of inflammation stimuli are eliminated, it will give enough of a break to the immune system to put the flare in check. However, for some other people, the immune system is so off the wire that it takes immunotherapy to correct that problem. A paleo diet will not reverse a mutation on the NOD2 or BRAF gene.

Yes, some people went drug free when they adopted this diet. Some of them. There are plenty of people with agressive forms of IBD who have tried the paleo diet and it didn't do anything for them either. If the paleo diet was the fix-all of IBD, everyone would be on it, and everybody would be cured.

The paleo diet is extremely restrictive and there is no doubt it is very, very difficult to stick to for some people. Selling the diet as the ultimate deliverance is pure hype. It's one of the alternatives, and it's perfectly fine to try it.

Demonizing the other alternatives like you do is irresponsible because some people have no other choice but to rely on them. Science that can't take criticism isn't good science.
 
They already have proven it. You're just not aware of it. And they're not saying the alternatives don't work. They're saying there's no conclusive proof it does work. There is a huge difference.
No, you are completely overlooking the fact that for some, the results obtained from alternatives are far superior. When my husband took medication for chronic colitis, he still suffered excruciating pain. He no longer has any symptoms, or pain, and hasn't for many years.

You also seem to be trivializing the fact that adverse effects from prescription medication is still ranked as the 4th to 6th leading cause of death, even when properly prescribed.

Yes, some people went drug free when they adopted this diet. Some of them. There are plenty of people with agressive forms of IBD who have tried the paleo diet and it didn't do anything for them either. If the paleo diet was the fix-all of IBD, everyone would be on it, and everybody would be cured.
There's no such thing as a "cure-all", not for conditions that are chronic. The Paleo diet didn't do anything for plenty of people? Well, neither does Humira or Remicade, and at least the Paleo diet didn't charge them $3,000 a month to find that out.

Seriously, have you even bothered to review the test study results of these meds? I found Remicade extremely interesting. Roughly 35% of the subjects who received Remicade were in remission at week 54, but so were 17% of the test subjects who received a placebo instead.

I don't consider a net gain of a whopping 18% to be much of a breakthrough success. Especially not when you consider the cost, or the side effects which include fatal infections, fatal blood disorders, including lymphoma, which is a fatal blood cancer, reactivation of Hepititus B, colon cancer, intestinal obstructions, hepatic reactions which are either fatal, or require liver transplants, heart failure, and a whole bunch of other deadly reactions I've never even heard of. I've been trying to get the exact percentages for each, but that they don't provide. Wonder why?

Remicade has the biggest "black box" warning I've ever seen. You do know what a "black box" warning is, don't you? It means the medication carries an extreme risk of serious, potentially deadly, adverse reactions. The medication that's burning my husband alive didn't even come with a "black box" warning.

Oh, but so you know. The Lymphomas and other fatal malignancies that have been reported in patients using Remicadee are mostly limited to children and adolescents and only a few in young male adults, so you're probably safe.

Please don't get me started on the deaths by fungal disease caused by Humira.

The paleo diet is extremely restrictive and there is no doubt it is very, very difficult to stick to for some people. Selling the diet as the ultimate deliverance is pure hype.
I never said this particular diet was the "ultimate deliverance" and I do not appreciate you putting words into my mouth that I never said.

What I actually said is "why not give diet a shot" and that it worked for my husband.
 
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Unless you possess the proper educational background, you cannot fully comprehend the complexity of the science involved with medicine. The human genome is so complex it is literally impossible to design a drug that would be 100% safe for everyone. You cannot predict a reaction that is essentially unique on a cellular/dna level for each future recipient of the drug you develop.

What are you saying exactly? Drugs like Imuran and Remicade are complete inventions, conspiracies meant to make the big pharmas a lot of money, and there is no evidence to support they work, only fabrications?

You are getting overly emotional about a debate that should remain purely objective and rational. It's understandable that you feel this way because of your personal experiences. But one must look at the facts. It's almost a certain probability that it was a drug that brought the onset of my UC. There have been four major lawsuits involving this drug and the onset of UC, and all four resulted in major money for the plaintiffs. This resulted in a cascade of cases, and now, there's like 400 of them awaiting trial. In spite of it all I strive to look at things objectively.

My pancolitis has been flaring for a year now. I found relief both in modern AND alternative medicine. It doesn't have to be only one or another. Demonizing either side is not at all helpful either,

A change in diet will not suffice to repair extensive cellular damage. That's not to say it cannot help or have a positive effect.
 
Unless you possess the proper educational background, you cannot fully comprehend the complexity of the science involved with medicine. The human genome is so complex it is literally impossible to design a drug that would be 100% safe for everyone.

What are you saying exactly? Drugs like Imuran and Remicade are complete inventions, conspiracies meant to make the big pharmas a lot of money, and there is no evidence to support they work, only fabrications?
And there you go, putting words into my mouth again. I never said a single word about "conspiracies", "big pharmas" or any of the other allegations you are fabricating. What's next? Tin foil hats?

Aside from a degree, my background includes reporting directly to the Board of one of the largest, most well-know and respected medical organizations, that sets standards and publishes scientific medical studies. I understand it just fine.

You are getting overly emotional about a debate that should remain purely objective and rational.
No. You are intentionally fabricating highly inflammatory false accusations, for the purpose of putting words into my mouth to change the meaning. Despite your repeated claims of "objectivity," I'm not seeing it.

It's almost a certain probability that it was a drug that brought the onset of my UC.
Oh Really? So, let me see if I've got this right. You are actually claiming that a pharmaceutical drug gave you Ulcerative Colitis, a chronic, extremely painful, lifetime condition? What were you being treated for? Sure hope it wasn't something like a flu virus. What a trade-off. And you find that acceptable?

This is just getting better and better.

There have been four major lawsuits involving this drug and the onset of UC, and all four resulted in major money for the plaintiffs. This resulted in a cascade of cases, and now, there's like 400 of them awaiting trial. In spite of it all I strive to look at things objectively.
Wow. 400 cases, all suing for the pain and suffering caused by a single drug, and that's just one. Obviously, none of these other victims of this drug are ok with their afflictions.

I found relief both in modern AND alternative medicine. It doesn't have to be only one or another.
Yeah, and so is my husband, so what's your point?

A change in diet will not suffice to repair extensive cellular damage. That's not to say it cannot help or have a positive effect.
If the extensive cell damage you are referring to is your UC, well according to what you just said, you wouldn't even have any cell damage if you hadn't taken that drug!

I don't have to demonize it. You've done a fine job of it for me. Thanks.
 
so what's your point?
My point was in the phrase you quoted, ie. it doesn't have to be one or another, it can be both.

Accutane has been linked with the ability to induce genetic mutations due to its toxicity. Both my dermatologist and my GI pointed me to the literature and explained it was a plausible explanation. Four courts have judged there was enough scientific evidence to establish that link, in any case. I haven't read these judgement in full and I don't care to either. If you'd like the details, it's a good place to start.

You still haven't really said what your position was, though. I don't mind if we keep discussing this further so long the tone remains civilized. There is no need for condescension or sarcasm.

My initial suggestion to Jaffa remains: try it, you have nothing to lose. Worse thing that happens is it doesn't work, best case, you find some relief.
 
My point was in the phrase you quoted, ie. it doesn't have to be one or another, it can be both.
I never said it had to be one or the other. Seriously, how do you even manage to make these things up?

Accutane has been linked with the ability to induce genetic mutations due to its toxicity. Both my dermatologist and my GI pointed me to the literature and explained it was a plausible explanation. Four courts have judged there was enough scientific evidence to establish that link, in any case. I haven't read these judgement in full and I don't care to either. If you'd like the details, it's a good place to start.
OMG! Are you really saying that you went to a doctor to get treated for acne, and as a side effect of the medication you were prescribed, you must now endure the extreme suffering and pain of UC, for the the rest of your entire life? That's even worse than I thought. How can you possibly be so nonchalant? That is freaking horrific!

I've already read the litigation, and OMG! Psychosis, suicide, IBD and even a single dose will cause severe birth defects. Big black box warnings, and patients required to sign agreements to use birth control while taking it. It's one of the most dangerous drugs there is. I can hardly believe it was ever allowed on the market. There's not even much room for doubt as to what caused your condition, and yet, you still trust these drug companies?

But hey! The awards being granted in the resulting lawsuits are ranging from $2 million to over $26 million, so I hope you have a lawyer. Any attorney will be more than happy to take you on contingency basis, meaning you pay them nothing. They only get paid if they win, receiving a percentage of the award.

You still haven't really said what your position was, though. I don't mind if we keep discussing this further so long the tone remains civilized. There is no need for condescension or sarcasm.
My position is that medication should be viewed as the last resort, not the first option. Natural remedies have their limitations, but the less you rely on modern medication, the more you reduce your risk of building up tolerances and developing severe adverse reactions. I won't even allow the dentist to give me novacaine to drill on my teeth. They rarely hit a nerve anyway.

Can't cure my husband's 3rd degree chemical burns though with herbs. The medication he was prescribed was discontinued, but the chemical reaction is continuing. He's being treated with injections, pills, and cortisteroid creams, along with the elimination diets--all prescribed by a number of physicians. We don't like it, but his choices are meds or death.

But my husband's condition is rare, and the medication that caused it was Lisinopril, which is used safely by hundreds of thousands of patients, and the risk of serious side effects is minimal.

But he's been able to control the colitis strictly with diet, and attributes that to the kefir, which really works for him. Of course it doesn't work for everyone, but nothing does that. Everyone's body chemistry is different, and sometimes may require a little experimentation, to figure out what works for you.

Oh, if you don't have an attorney, please get one right now. Accutane's been recalled and taken off the market, and the time period for filing your personal injury suit may soon be limited. I don't want to scare you but there have been additional side effects that you may yet develop, which could disable you further, and effect your ability to earn a living. So you really need to do it regardless of whether you want to or not. The case against Accutane is so strong, lawyers will stand in line to take you on as a client for free ( contingency basis.).
 
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OMG! Are you really saying that you went to a doctor to get treated for acne, and as a side effect of the medication you were prescribed, you must now endure the extreme suffering and pain of UC, for the the rest of your entire life? That's even worse than I thought. How can you possibly be so nonchalant? That is freaking horrific!
Well, there's no way to know for sure it was Accutane, but the timing fits and there's enough evidence to support that theory according to these courts. I underwent two Accutane treatments. One as a teenager and one as an adult. I was never told I could end up with UC. Which is why Roche (the pharma behind accutane) will pay through the nose for it. I was explained all the other risks. Unlike most people, I had almost no side effects while taking it, and it was very effective.

But if I am going to be honest, if my dermatologist had said "you have a 1% chance of ending up with a very rare, painful, incurable debilitating disease" I would probably have said "give it to me anyway". The acne problem was extremely severe, and the usual treatments (face creams, antibiotics, etc.) were ineffective. It affected my daily life so dramatically that I would have taken the 1% chance. My choice at the time was something like a 95% chance the acne will resorb itself versus 1% chance of permanent damage. I'd have weighted the pros versus the cons and went for it anyway.

I think you interpret my passivity as nonchalence, but it is not. Accutane could be responsible. Do I think Roche should be held accountable for their drug, a drug that has generated BILLIONS in profits? Yes, I think they should be.

However, it doesn't mean that I want to personally lead a crusade against them and dedicate the next years of my life hating Roche for inflicting me with this disease. What will it change? I'm stuck with UC now. The pancolitis is there, it's flaring, I had been in pain for months and months.
Today, I am happy to be pain free. I'm happy I can live again. I have all my life in front of me, I won't spend the rest of it hating pharmaceuticals. It won't change my situation and it won't bring more quality of life for me.

I'm still thankful for things like ibuprofene (well, I was), paracetamol (tylenol) and antibiotics. I'm thankful chemotherapy existed or my father would not have survived his colorectal cancer. I'm thankful morphine exists so he didn't have to suffer after his surgery, and I'm thankful for vicodin too so he could go home without going blue from the fear that pain might come back to visit him.

Don't forget that all of us on these boards have drew the proverbial short straw. IBD are no longer orphan diseases but they are still pretty rare. We're the result of mathematical probabilities hitting us in the ass. Millions of people took Accutane without any repercussions. I'm part of the unlucky 1% who was affected. It sucks, life can be a PITA sometimes, but it has to go on.

If your position is that drugs should be a last resort instead of a first approach, I think it's a perfectly valid point of view. I don't agree with it, but I certainly respect it. And I also understand why you despise pharmas like you do. If my spouse had had an allergic reaction that caused 2nd/3rd degree burns all over his body as a result of taking a pill, I'd be angry too.

I admire your passion. Your husband is very lucky to have a spouse so determined and dedicated to his condition. Very lucky indeed. I hope you remind him often ;)
 
I've seen others on the board mentioning a belief that taking Accutane could be behind their developing an IBD.

It reminds me of something people that eat a paleo diet often mention, their acne goes away. Their skin becomes nice and clear on the diet. Imagine the same happens with the similar SCD diet.

I've seen one of the more popular paleo researchers, Dr. Cordain, even wrote a book about controlling acne with diet.

"The Dietary Cure for Acne"

http://www.amazon.com/Dietary-Cure-...=UTF8&qid=1360511864&sr=8-10&keywords=cordain
 
I've seen one of the more popular paleo researchers, Dr. Cordain, even wrote a book about controlling acne with diet.
There are many forms of acne, each with a different physiopathology. Accutane is only effective against three our four of these forms. Some forms of acne are milder and will respond well to changes in diet or a simple topical cream. Others are more resilient. I had acne for five years before my dermatologist finally suggested isotretinoin, so we had tried everything. About 20-30% of Accutane patients have a relapse 5 to 6 years after their first treatment stopped. My dermatologist said it wasn't uncommon, so I went through another six months course. Three months in, my GI issues started, and the rest is history.

Four courts in the US have judged there was sufficient evidence to establish a link between accutane and the onset of an IBD. I haven't see that evidence, but considering how extremely toxic it is (in the US, there are some states that force you to sign a contract which prohibits you from having unprotected sex to make sure you don't conceive a baby while on the drug), I'm not surprised at all.

In any case, this is truly off-topic and completely unrelated to the OP's question, so my apologies for diverting your thread.

If you do try the diet Jaffa, if you can, let us know how you are doing :)
 
I don't think you understand. You don't have to lead any crusade or spend any time outside of securing counsel to handle your claim, and settle it outside of court for you. Or you can become part of the "mass tort" litigation currently in the court. At most, you have to provide your medical history, and possibly a deposition. Outside of court, you probably won't receive as large a settlement, but your participation will be minimal and you don't have to hate anyone.

You will never have to see the inside of a courtroom if you don't want to, or spend more than a few hours of your life either. The vast overwhelming majority of these cases are settled via private agreements, and rarely are ever taken to court. The cost of settling is almost always far less.

If your dermatologist had been advised of the risks, he might not have even recommended it, or advised against it. And even though you feel you would have taken it anyway, you don't know that for an absolute fact, because you were never advised of the risks, and provided with the opportunity to make an informed decision.

At one point, I not only considered LASIK surgery for my eyes, I even put away money in my medical plan at work for it. But once I had the money saved, I went into to talk to the doctor, who explained that yes, I probably would no longer need contacts or glasses to drive, but in years to come, it very likely could make my up close vision worse. Most of my work is done on a computer, and the ability to see up close is far more important. That discussion changed my mind. Glad it did because I know more than a few who had the surgery, and are now having difficulties reading, even with reading glasses.

So you don't really know what you might have done. You're also looking at this all wrong.

One of my relatives developed lung disease from his job as a sand blaster, because he refused to wear the breathing apparatus required by law, and openly admitted it too. Regardless, he won his case against his employer because the court determined that it was his employer's responsibility to either make him wear that breathing apparatus, and when he refused, should have fired him rather than allow him to perform his job without it. So you need to stop seeing this as "your decision, your fault."

What would it change? An appropriate settlement would change your ability to seek out and pay for private specialists, obtain treatments that you might not be able to obtain through the socialized medical system, and even possibly to obtain specialized equipment that would enable you to work from home, or even start your business. You may be in remission right now, but how long it will last is uncertain. A settlement could change all kinds of things about your situation.

FYI, Accutane lawsuits now number in the thousands, the estimated percentage of those afflicted are far higher than 1%, and that it causes permanent gastrointestinal damage has already been established. There are law firms all over the Internet looking for you.

On a long-term basis, Tylenol will destroy your liver. Doctors are no longer prescribing antibiotics as often because overprescribing these drugs in the past is now being attributed to the creation of "superbugs" which no longer respond to penicillin, and they are now forced to resort to antibiotics which are far more powerful, dangerous, and even deadly. Chemo is no longer used that often following surgery because more patients were dying from chemo than the cancer. My dad had colon cancer, no chemo, and after surgery, was kayaking within the month. Morphine and Vicodin? Do you have any idea how many people die from accidental overdoses? They make people so groggy, they can't remember how many pills they took. That's aside from interactions with other drugs, mistakes made in filling prescriptions, and of course the danger of addiction, and they only work so long before the body builds up tolerances, rendering them ineffective. Yes, I'm in favor of legalizing MM. Not only is it a more natural and safer pain remedy, but more effective for long-term use, no pharmaceutical alteration required.

With prescription medications ranked between the 4th to 6th leading cause of death, only reporting to meds as a last option doesn't mean I hate pharmaceuticals. It means I value my life.

I don't just blindly trust anyone. Why would pharaceutical companies be any different?
 
I think your point is that every drug has pros and cons and that whether we choose to use these drugs or not is our own decision to make. Hopefully it will be an informed decision.

People die of overdose everyday. People die in car crashes, plane crashes. Everytime you fly somewhere, you take a risk. There's an infinismal change that the plane will crash, but in most cases, people think it's worth the risk to save all these hours of traveling it would otherwise take by train or by car.

Which treatment option people chooses is exactly like that. Drugs have the power to save lives, they can also end them, unfortunately. Perhaps in a few hundred years, if we haven't destroyed ourselves by then, we'll have drugs that are safe for everyone. We're not there yet, and I don't take the world could do without them either. We can however minimize damage by educating people on their choice so they can make the one that fits their needs and/or expectations :)
 
I'm kind of looking forward to the day when we neither need or have any use for meds. and I like growing and preserving our own food, and cooking from scratch. It's not just healthier, but tastes better too.

Flying is far less risky. There are roughly 35,000 auto deaths per year vs 200 plane deaths.
Accidental death from drug overdose alone, now exceeds the number of deaths from auto accidents, while over 2.2 million are hospitalized per year from adverse drug reactions, and over 2 million a year contract infections from hospitals, while 90,000 die from them. In the year 2000, JAMA published an article with statistics showing over 250,000 deaths from iatrogenic causes, Defined as "induced by a physician's manner, activity or therapy," making doctors the 3rd leading cause of death, right after heart disease and cancer.
http://www.joyfulaging.com/iatrogenic.htm

Statistically, your chances of dying in a plane, car, or drug overdose combined, are far lower than your chances of dying from the treatment prescribed by your doctor.

The Paleo, SCD, GAPs and makers diets aren't all that much different. On occasional, I still crave strange foods, like corn dogs and diet sodas, but occasional lapses don't really do much, if any, harm.

But we only started getting into natural remedies only after tradition meds. failed. I originally suffered from severe allergies, that got worse, and medications either didn't work, or made me too tired to do my job. Nothing really worked on my husband's colitis, until he tried kefir, which was like a miracle cure. Maybe he was just lacking in a specific enzyme or probiotic strain, who knows?

I even used megadoses of vitamin C injections and raw liver to cure my cat of FIP (Feline infectious Peritonitis), but only because my vet told me it was 100% fatal, there was no treatment, no hope. It was also over 10 years ago, and my cat's still healthy and alive.

There are researchers working on a cure for FIP, and feel they've made great strides because they've managed to keep 1 whole cat alive now for 26 months. I've written them several times, enclosing copies of my cat's lab work, along with her healthy kitty pics, but still haven't received a response. No money in vitamin C, but in fairness, it doesn't work that often. I knew it cured a few other cats, only a few. Regardless, when your choices are either death or giving vitamin C a shot, the choice is a "no brainer."

Many who turn to supplements, diets, and other alternatives, only do so after having failed most traditional medical treatments and medications. There's not always as much choice as you may think.

If you don't visit other sections and weren't aware, we just did this debate with herbal suppliments, recently on this thread: http://www.crohnsforum.com/showthread.php?t=42931
 
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