Re: Fanatical Adherence to SCD

[Guest guest]

Hi Marilyn. I admire you for your very strict adherence as well as your incredible knowledge of all things SCD.

I try to adhere fanatically, except in circumstances where I can't get SCD-legal versions of necessary medications.

The one thing I eat that is against the rules is flaxseeds. I need the ingredients in flaxseeds to combat the bad estrogens in my system that aggravate the pain in a breast cyst. I tried switching to flaxseed oil, but it doesn't contain the necessary chemical, so it had no effect.

I have been grinding flaxseeds very fine in a coffee grinder each morning, then mixing them into my breakfast dish of SCD organic whole milk yogurt, with whichever berries I am eating that day, and a drop of honey. I have been adding the finely ground flax seeds since September 16th (according to my food diary), with no harm to my guts and with some lessening of the cyst pain.

I understand that Elaine cautioned against consuming flaxseeds because they contain lignins, but so do sesame seeds, which I eat without grinding and have been doing since I was only about 1 month into SCD.

Of course, I didn't start out with inflammatory bowel disorders. I have had irritable bowel syndrome for many years, which I always attributed to fibromyalgia. Until I discussed this diet with my ME/CFS doctor in February 2008, I had no idea that SCD could also help with IBS. I am hoping that it is also helping with leaky gut and with my ability to absorb nutrients, because I will soon be starting on some nutritional supplements (which I will first have to check for SCD compliance) that are intended to down-regulate some of the biochemistry problems that are linked to FMS, ME/CFS, and MCS (Ziem/Pall protocol).

In the 36 weeks since I started on SCD, I have not managed to cure my IBS, but my symptoms are significantly diminished. Also I have lost 50 pounds of unnecessary fat, and I am at the lowest weight I have been at in 31 years. While I still have more flab to lose, I have noticed that I am better able to descend stairs now, even when my knees are in pain.

So it would appear that my body is happy with the way I almost fanatically adhere to the rules.

I suspect that there is a difference between my eating finely ground flax seeds and other people drinking beer or eating chocolate while still healing. I dislike beer and suffer from my allergy to yeast when I'm around other people drinking beer. At present, I don't consume any alcoholic beverages, because of other health issues.

I have managed to view chocolate, potatoes, and all the other foods I once thought impossible to give up as being harmful to my health and therefore not worth eating. But the flax seeds are helpful to my health.

Regards, Ellen

[Guest guest]

At 04:56 PM 11/24/2008, you wrote:

I

try to adhere fanatically, except in circumstances where I can't get

SCD-legal versions of necessary medications.

Basically, that is what Elaine said we ought to do. Obviously, we'll do

better if we can get all legal meds, but sometimes, that is not

possible.

In the case of the flax seed, you have to balance the benefits of this

medication -- since that is what you are using it as -- over not having

it. Be aware that the small amount of illegal will probably prolong the

healing process. (I have a similar issue with a nutriceutical which

controls the muscle spasms in my back, and feel that it is probably why

it's taking me so long to fully heal.)

Hurrah for normalizing your weight -- that's one of the most wonderful

things about SCD! Those who need to gain weight ultimately gain it, and

those who need to lose weight usually do!

Some time back, they installed vending machines in the lobby of the

fitness center where I do my water therapy. (How's THAT for irony?!) I

wondered over and looked at the brightly packaged snacks, more from

curiosity than any thing else. All were illegal. And then I realized just

how far I had come on my healing journey. Because all that stuff was

prettily packaged and looked nice. BUT IT WASN'T FOOD. I had no desire

whatsoever to eat or drink any of it.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

>> Here's another one of my articles....> Fanatical Adherence

> Hi Marilyn,

You probably have no idea what a huge blessing you are to us new

SCDrs. Thanks for the advice and encouragement. It is easy to think

one may " cheat " , but the consequences aren't worth it. Experience is

the best teacher. You and many others help us all stay on the

straight and narrow! On a personal note, I've been SCDing for 2

months and am finally seeing wonderful results. It is giving me

hope. After getting off meds (which the doctor and I felt were not

helping me at all), and after explaining SCD to her, she said, " well,

if it's working for you, keep it up and we'll track your progress. "

Her group is one of the best GI specialists in Portland, Maine and

she had never heard of this program. It's a shame. My hope is that

after I am D-free for a long period of time and can attest to the

success of my healing through diet that they will pass on information

to other patients. I did give her the official BTVC website;

hopefully she will check it out.

With Thanksgiving just around the corner, thank you all for CARING,

for HOPE, and ENCOURAGEMENT and for helping us to HEAL!

Bless you all,

Dianne, CD, SCD 9/22/08

[Guest guest]

Dianne,

My motto is to " pay it forward. " The people who helped me when

I was new to SCD (and who very carefully, for the most part, did NOT say

" We told you so! " when I screwed up, but just, " OK, now

you know why we said... and now you know where you're going from

here... " ) were utterly invaluable to me.

I can't pay them back for their wisdom... but I can pass what I have

learned (along with examples of how not to do things!) to newcomers, in

the hope that their journey will be a little less bumpy than my own

stubbornness made mine.

Your job is to learn... and you'll be amazed at how quickly you'll find

that your experiences contain information to help others.

I think you are incredibly fortunate to have a doctor who is willing to

monitor your progress, and who admits that sometimes more and stronger

medicines are not the answer. And yes, maybe your experiences will help

other patients to find SCD.

I've been lucky, too -- I had a doctor for pain management who took down

the information on SCD, looked at the web sites, and told me, " You

couldn't be on a better diet for your issues! " (She also recognized

that my pain issues weren't arthritis, and wouldn't " go away if I'd

just stop stuffing my face and lose a little weight, " as one M.D.

told me, and sent me for a sleep test, which showed I had

complex sleep disordered breathing... since CPAP, I don't hurt!)

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Marilyn--thank you for this lovely piece. Especially the 'permission' to take those meds we need to alleviate pain even though they may have illegal ingredients. It gave me piece of mind. I get back pain that sometimes is only helped with Ibuprofen and I have had to make a conscious choice to take it, after much hemming and hawing and doubt. The pain relief was worth it, so I can work. The bowel consequences were usually mild, but it's nice to hear someone with some common sense. Usually fanatical philosophies don't have common sense threads.

BTW, if someone has a source for legal acetominophen ( Tylenol) I would greatly appreciate it.

Thanks,

Terry

Fanatical Adherence to SCD

Here's another one of my articles....Fanatical Adherence So. You've made up your mind that you're sick and tired of being sick and tired. Or you're tired of constantly worrying about a loved one who is that way. You don't want to spend the rest of your life like a hermit in your house, dashing to the toilet every few minutes - or seeing a special person do that. You really, really don't like the notion of a surgeon coming along and ripping out important body parts. And you really do want to get back to being able to enjoying your food, instead of eating in fear and trepidation, fretting about indigestion, gas, pain, nausea, diarrhea, constipation, where the nearest toilet is, and so forth. Good for you! If you have access to the Internet, and join the SCD listservs, you may feel as if all SCDers are paranoid and crazy. After you've been at this awhile, you know they are, but they have a point. Several of them. I will be the first to acknowledge that when I first signed on to the original Long Island listserv that I thought the people preaching fanatical adherence were entirely too fanatical. I mean, Elaine Gottschall was only one woman: she wasn't omnipotent or omniscient! And there are lots of books out there about gut health - Breaking the Vicious Cycle is only one book. Right? True, Elaine Gottschall wasn't omniscient or omnipotent. She'd have been the first person to admit she didn't know everything. But she did spent forty years researching the science behind the diet and its applications. Moreover, she had a caring and giving heart. She wouldn't have given of herself so completely for forty years if she didn't believe the Specific Carbohydrate Diet was worth something. And true, BTVC is only one book. But it is a book which, when its tenets are adhered to fanatically, works. It is what is sometimes called "evidence based medicine". Yes, there are other books, and other diet counselors out there. But SCD works. If you choose to use foods and products not vetted in Breaking the Vicious Cycle, it is a free world, and you are entitled to do so. However, if you do, you are not following SCD. Therefore, you will not know if it would have worked for you. Speaking personally, fanatical adherence is necessary. I had trouble finding some of the things I needed (like dry curd cottage cheese, aka DCCC). I was sick, as a result of gall bladder disease, surgery, and a bad reaction to the anesthesia which turned same-day surgery into a five-day hospital stay. So instead of DCCC, I carefully washed regular cottage cheese, even though it had illegal carrageenan in it. I also used commercially dried onion and garlic pieces. I used these in my crackers for several months. It appeared not to be a problem, as I was doing very well. Then I was to attend an SCD get-together. I knew that while I had the right to use illegals on my own, I did not have the right to take food containing illegals to an SCD party and present it as legal. So I knuckled down and dried lots of yellow onions and sliced garlic, made more yogurt than I want to think of for yogurt cheese as a DCCC substitute, and made sure (at last) that every illegal was out of my house. Know what? I had been doing very, very well on my not-quite SCD. My IBS symptoms were almost all gone. My weight was normalizing. But when I eliminated all those tiny little illegals, I experienced a dramatic improvement in my symptoms. It was really shocking to realize how I had been cheating myself of improved health. Moreover, I realized that it is just too easy to say, "Well, one little illegal with breakfast won't matter." And then, "One little illegal with my morning snack won't hurt." And on and on, until you "one little illegal" yourself into not following SCD at all. And then you will wonder why you are not getting well. A couple months after the Gather, I found a bag of crackers with the illegal ingredients in them - they'd been in the freezer. I hadn't had time to bake any, and figured I would use them up. Guess what! Just the small amount of illegals in those crackers woke up the remaining bad bacteria in my gut and gave me a real nasty flare, which luckily, abated quickly by going back to the introductory diet for two days. This told me that had I done SCD one hundred per cent from the very beginning, and not tried a short-cut, I'd have probably been far more healed than I was when I did commit to it fully. Being stubborn, and the sort to stick my finger into a candle flame just to see if it really is hot, like everyone says, I had to experience that flare for myself before I truly and completely believed. Something else to understand. When you do SCD, the objective is to starve out the bad bacteria. When you continue to ingest illegals, you continue to feed the bad bacteria in your gut. The weak sisters among them will die out, leaving only the strongest and nastiest bacteria to reproduce. Which means that it will be even harder to starve them out in order to get well. So if it seems like the Fanatical Adherence Police are out in full force when you correspond with other SCDers, there's a very good reason. They are. Because every single person who has, or is getting well on SCD cares, and cares deeply about the thousands of people they may never meet face to face, but with whom they share a common bond: debilitating and humiliating illness which can, in most cases, be cured by adherence to the diet. Fanatical adherence doesn't mean you have to grow your own almonds (the almond flour from Lucy's Kitchen Shop works nicely, thank you!), or grind your own cinnamon (most individual herbs and spices are legal as purchased; exercise extreme caution with any mixtures). Fanatical Adherence does mean following exactly what the Breaking the Vicious Cycle says, read labels. Trust no manufacturers unless they provide proof in writing on their letterhead that their product adheres to the guidelines. There are two caveats to the above: first, prescribed medicines which the SCDer must have to stay alive. If it is not possible to get these formulated without illegals, you should still take them. If you want to go off these medicines, discuss the matter first with your health care professional. The second caveat is that pain does no one any good. NSAIDs (non-steroidal anti-inflammatory drugs), such as ibuprofen (aka Advil®) are pure <deleted> on an already unhappy gut. Likewise aspirin. It is usually possible to find Tylenol without illegals, but if the option is unremitting pain, then take the painkiller even if it does contain illegals!

- Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund

[Guest guest]

At 08:06 AM 11/26/2008, you wrote:

BTW, if someone has a source for

legal acetominophen ( Tylenol) I would greatly appreciate

it.

Find a compounding pharmacist and have your GP or PCP write you a

prescription for acetaminophen with no additives. It will not be cheap

(In 2004, I got some, and 400 capsules ran around $40.00 because these

are hand-made -- I just ran out, though.) and insurance probably will not

pay for it. It's worth it, though, to have SCD-legal pain relief on

hand!

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Thanks, Marilyn.--They've gotten more expensive! I tried calling the one compounding pharmacy in my area (RI) and they don't do acetaminophen or a lot of people things ( more vet). So, I called the Hopewell Pharmacy in NJ, which I had seen on an earlier post and they are sending me 100 caps for ( with UPS shipping) $52.00 ( for 500mg each). It is worth it, I don't take them every day and it's good to have it when I need it.

Terry

Re: Fanatical Adherence to SCD

At 08:06 AM 11/26/2008, you wrote:

BTW, if someone has a source for legal acetominophen ( Tylenol) I would greatly appreciate it.Find a compounding pharmacist and have your GP or PCP write you a prescription for acetaminophen with no additives. It will not be cheap (In 2004, I got some, and 400 capsules ran around $40.00 because these are hand-made -- I just ran out, though.) and insurance probably will not pay for it. It's worth it, though, to have SCD-legal pain relief on hand!

- Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund

[Guest guest]

At 01:43 PM 11/26/2008, you wrote:

100 caps for ( with UPS

shipping) $52.00 ( for 500mg each). It is worth it, I don't take them

every day and it's good to have it when I need it.

OUCH! Expensive! You didn't need a script to get them from Hopewell,

though? And yes, having them on-hand is a Good Thing.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Yes, you need a script. The pharmacist allowed me to prescribe for myself, I'm a dentist. He was very familiar with SCD and compounding for it. That's good to know for the future.

I want to wish everyone a Happy Thanksgiving--reading your posts has kept me from feeling alone.

Terry

UC diagnosed 6/2008

Lialda 2 tabs per day

SCD since 7/2008

Re: Fanatical Adherence to SCD

At 01:43 PM 11/26/2008, you wrote:

100 caps for ( with UPS shipping) $52.00 ( for 500mg each). It is worth it, I don't take them every day and it's good to have it when I need it.OUCH! Expensive! You didn't need a script to get them from Hopewell, though? And yes, having them on-hand is a Good Thing.

- Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund