Naturally Gutsy

Surviving SIBO, IBS-C, Celiac Disease, Motility Disorder, & Pelvic Floor Dysfunction …. with a smile.

GI And SCD Update

It has been a long time since I’ve written on Naturally Gutsy, yet I get a lot of visitors daily asking the same questions I’ve asked over the years while trying to manage my gastrointestinal (GI) disorders. So I know you’re out there. The two main search queries I get are from folks curious about whether SCD (the Specific Carbohydrate Diet) really works and is worth the effort and those who want to know more about biofeedback to treat pelvic floor dysfunction and constipation. I can only offer you my personal experience; don’t take it as medical advice.

Specific Carbohydrate Diet

I’m still STRICTLY adhering to SCD. Depending on my gut’s stability, I’m able to eat between 30 and (at best) 40 SCD-legal foods. There are lots of people in other countries who survive on 10 or less foods because they don’t have the luxury we do of getting food from all over the world. I’m ALWAYS grateful that I can now eat solid foods and I’m happy with my 30 foods because I’ve learned to make all kinds of things with some culinary creativity! My food is flavorful and others often enjoy it too. Using herbs and spices has kept me from cheating because I can taste wonderful varieties. Our tastebuds become more joyfully sensitive after we’ve followed SCD for a while. I can now taste preservatives and all those things that don’t belong in my food – and they taste icky! Don’t know how I ate that stuff before.

I’ve been on the diet since November 20, 2011 – almost three years. I never thought I’d be able to say that! I’m not often tempted to cheat because when I have cheated (about once every 6 months), I pay for it severely and all my previous gut symptoms return, even with one cheat meal or snack. It an take weeks to recover. I know by the third year many on SCD seem to have few symptoms and some can even slowly resume a more “typical” diet. I’m not one of those people. I can now accept that this may be a lifelong lifestyle for me and I’m not usually sad or frustrated by that.

http://www.SCDLifestyle.com has been instrumental in my progress. Without Steve and Jordan I just don’t think I could have done this diet! If you need support or ideas, check them out! You won’t regret it. Their plan helped me walk, step-by-step, through starting and growing on SCD. They added to what Elaine Gottschall began and made it practical to daily, contemporary life.

I’ve learned in the last year that I have Dysautonomia, or Autonomic Dysfunction of my autonomic nervous system which controls all those things you usually don’t think about – breathing, temperature regulation, sweating, blood pressure and even the movements of our GI tracts. Mine’s seriously screwed up. I believe this has lead, in large part, to my constant SIBO (Small Infection / Bowel Bacterial Overgrowth) infection because slowed motility will do that. I can’t change that my brain mixes signals, even with the strictest diet. I believe that as my motility has slowed as my other conditions have worsened, and this makes knocking out methane-predominant SIBO nearly impossible.

I do still take laxatives. I’ve tried every one on the market including prescription laxatives. While I’ve felt magnesium citrate has been the most effective and gentlest on my particular GI tract, I’ve learned that it also irritates my bladder, so I’ve recently stopped taking it and I’m searching again for a laxative solution. I’m on a high salt diet to treat my Dysautonomia, and lots of salt can pull water into the intestines so I’m experimenting with salt capsules I compound myself (to make them SCD legal) to see if I can not only increase my BP with salt and water loading, but also get a laxative effect. So far it has helped, but I still need more assistance, so I’m considering going back to Miralax and/or trying Linzess. When I keep my laxative regimen in check daily, the bloating is much more manageable and I can fit my size 6 pants again (instead of wearing maternity pants because my poor belly was so distended).

How does my gut feel? Pretty good when I’m strict on SCD AND I’m taking a laxative that works for me. It’s not perfect, but it’s lightyears better than it was several years ago and I’m satisfied with my progress, especially considering the challenges presented by Dysautonomia. I don’t use antibiotics. I still prefer to do a colonoscopy prep in order to clean out the bacteria in my gut if the SIBO flares badly, though those flares are much less common now unless I let the constipation get a hold of me because of decreasing my laxative use. Some days I get nausea still and I don’t know what triggers that. Most days my Bristol scores are between 3 and 5. My gut is no longer the center of my world and I’ve moved on with that part of my life because the diet has been as effective as it can be for me (hence my silence on this blog).

Of late (the last three weeks) I’ve had trouble because I tried a stimulant laxative due to the necessary discontinuation of the magnesium citrate (which had been working wonderfully). All stimulants, from Dulcolax to senna tea and castor oil give me level 9+ pain intestine cramps. So all stimulants are OUT for me. I’m going to try Linzess soon, and I’ll let you know how that goes. I’m also increasing my fat and water intake.

Biofeedback for Constipation / Pelvic Floor Dysfunction

I still don’t have the sensation that I need to have a bowel movement like most people do because I have rectal dyssynergia. Instead, I get pain and then I know I need to use the bathroom. It’s not as bad as it used to be, however, and I don’t feel anxious about going to the bathroom. I also don’t throw up when I have a bowel movement. Biofeedback doesn’t promise that our sensation will change. It teaches us how to go more effectively and retrain our muscles.

If you want the nitty-gritty details on my experience with biofeedback and what you can anticipate if you are going to do it, check out this post.

My ability to have a successful and less painful BM is better now than it ever has been despite the fact that I haven’t had more than a few checkups since sometime early- or mid 2012. I do have pelvic floor problems if I let my Bristol scores get out of hand by not drinking enough water, not taking laxatives, not moving around, eating lots of fiber and not enough fats, etc. These problems are resolved once the triggers are addressed.

I’m not afraid to use public restrooms and I do so successfully without enemas. Every once in a blue moon I have trouble fully evacuating. I carry a baggie with two nitrile gloves, some lube and wipes in case of emergencies. Manual evacuation is NO FUN! But it’s a whole lot better than suffering for hours. Stress can trigger pelvic floor issues; doctor appointments in particular. I have learned not to leave home without my little survival kit. It’s even more unpleasant to try to manually evacuate without gloves, lube and wipes. Better safe than sorry!
To Sum It Up…

My gut isn’t perfect and I’m still symptomatic. But I’m happy and satisfied with my progress because I never thought it could even be managed this well when I was in the thick of it a few years ago. Following SCD is a lifestyle for me now. I’m content. I still continue to work out the kinks when they come, and they will come, and I often remember where I was which makes me grateful for where I now am. I still flare and need anti-nausea drugs or Levsin to control spasms, but that’s typically because I’ve had to change a part of my routine due to other health complications. I am still tweaking my diet.

Considering SCD? I say GO FOR IT! Has biofeedback been recommended? Try it! Really, if you’re already suffering, what do you have to lose?

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1 Year SCD Anniversary!

On November 20th, 2012, I celebrated successfully adhering to the Specific Carbohydrate Diet for ONE WHOLE YEAR and the progress in my health that God has given through the diet.  I also celebrated in my heart by remembering all the things friends and family have done for me since I began this dietary journey.  When I have been too sick to cook or clean, my friends have shown up with smiles and a happy willingness to serve me in the love of Christ.  I am one very blessed woman!

birthday candle steak 1 Year SCD Celebration Frosted Vanilla CupcakeI celebrated the day very simply; nobody else was around…just me and my thoughts.  I wanted to stick a birthday candle into a cupcake or something like it but cupcakes simply aren’t make-able with the 15 or so foods I tolerate, and a birthday candle in steak is just…weird.  Therefore I found the next best thing – a vanilla icing cupcake scented candle!  Yes, it smells amazing!  So I lit it and celebrated by enjoying the scent.

Two days before my 1 year celebration I went with a friend to Trader Joe’s grocery store.  I used to shop there ALL THE TIME but since I’ve been eating about 6 vegetables, a few meats and fats I’ve begun shopping locally at Aldi’s and Harris Teeter.  I love Trader Joe’s, however; all the employees there know me and they are knowledgeable and helpful when it comes to dietary issues.  My friend, Mike, has been getting to know me since May of 2012, so he’s seen me since I’ve made progress on the diet and wouldn’t know how very sick I was before starting SCD in 2011.  But the employees at Trader Joe’s knew how sick I was…I was dragging every time I came in, pale, and struggling to find ANYTHING to eat that wouldn’t

scd flowers

make me sicker…staring for 10 minutes at a box of gluten free waffles and trying to hold back tears as I wonder why I couldn’t eat them without suffering.  This visit to Trader Joe’s was so different from previous trips, however!  I didn’t even make it through the door before Terri, a TJ’s employee, looked up at me and said “Sarah!  Wow!  You look great!!!”  Rachel and a bunch of other employees heard that I was in the store and they all stopped to tell me I looked so good, strong, and wanting to know about this diet I’ve been doing.  They were so excited for me!  In fact, they gave me a free boquet of beautiful fall-colored flowers to celebrate 1 year on SCD with me and support me in my progress!  I felt so encouraged and valued – I was beaming a smile from ear to ear.  :D

My friends have seen me through the process over the last year, so while they appreciate how far I’ve come, my progress has been gradual and has lost its shock value.  But for the friends who have not seen me for many months, the changes are dramatic.  As we left the store with our purchases and the free boquet of flowers, I felt like I’d just won a gold medal in the Paralympics.  I asked Mike, “So, that was different.  What did you think?”  He answered, “They were really happy to see you; you’ve got a lot of friends.  You’ve made a lot of progress and I’m proud of you.  I didn’t realize you were that sick before.  You’re really courageous to stick with this diet.  I get to keep the flowers, right?”  At which point I elbowed him in the ribs, defending my hard-won boquet.
steve jordan scd lifestyleThe progress I’ve had on my customized version of SCD simply wouldn’t have been possible without SCDLifestyle.com.  Jordan and Steve have helped me so much through their books and advanced SCD course.  When I consider what I’ve spent my money on in the last year to improve my health, the books and information I’ve bought through SCDLifestyle have been the most important contribution to my health progress.  The second most important purchase has been my supplements which help me digest much easier…and if it wasn’t for Steve and Jordan, I would never have known which supplements to take!

I am excited about the progress I anticipate in the next year and beyond.  I know there will be times when I still crash and burn, often due to unknown causes, but I believe they will continue to decrease in frequency and intensity as time goes by.  I’ve not come this far to give up now or sabotage my progress by eating illegal foods.  So you can expect that Gutsy Girl will be sticking to SCD for the foreseeable future.

scd flowers 1 yr

How long have you been doing the Specific Carbohydrate Diet?  Will you celebrate your anniversary each year, and if so, how?

 

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SCD Lifestyle Book Review – Surviving To Thriving

I’ve been on the Specific Carbohydrate Diet (SCD) for 318 days as of today (not that I’m counting or anything…).  I’m very excited about celebrating my 1 year anniversary on November 20, 2012; I’m planning a party!  :D

Since 2011 I have made very significant and celebration-worthy progress in my health and it wouldn’t have been possible without SCD Lifestyle, faith in God’s sovereign goodness and daily prayer, the support of friends and family, and a few dump trucks worth of self-control.

Overwhelmed with both my severe health problems and seeing SCD as my “last ditch effort” (oh how many diets I’d tried before!) to achieve any amount of relief from the debilitating pain and symptoms I endured 24/7, I had hit Rock-Bottom Desperation.  Unfortunately, I was about equally overwhelmed with the restrictions of SCD, especially since I knew I had nut allergies and could not make baked goods (effectively making most BTVC recipes “no can do’s”).  I was scared, and rightly so; my health had deteriorated so drastically in several years and I felt like I was dying and nobody really knew how to help me even though I’d done “everything right” according to what my doctors told me to do – I was the PERFECTLY gluten free Celiac, and I was still dying.  I felt alone.

Then, I met Steve and Jordan of SCD Lifestyle.

I somehow stumbled across them through the ‘World Wide Web’ while googling questions I had about SCD.  I read the free chapter of their SCD Lifestyle – Surviving To Thriving E-book that they offered online, and I bought the book the same day.  The hot tears rolled down my cheeks as I read Jordan and Steve’s story because I could relate so personally to their challenges and I’d finally met real people who were “speaking my language” and shared my experience – I was just so relieved to not be alone anymore!  I let out a big sigh of relief because it was clear that these guys knew their stuff and they were no longer just surviving gastrointestinal illness – they were truly thriving.  I was hooked and I had to keep reading!

While I couldn’t possibly be more grateful to Elaine Gottschall for her life work on transforming Drs. Haas diet into its next iteration in the Specific Carbohydrate Diet, I also felt that the practical steps of making it “work for me” were missing.  There were many questions I had which were unaddressed in BTVC and in online forums and message boards, and I felt that so much of Elaine’s time had been given to defending the diet and why certain foods were not allowed rather than breaking the diet down into very practical steps or addressing issues for folks who still seemed to be unable to tolerate many SCD Legal foods.  After her passing, this job was left to her followers; Jordan and Steve picked up the baton and ran with it!

With Steve and Jordan as my guides, I followed their advice through their book step-by-step.  As they instructed, I wrote out my commitment to do the diet with 100% fanatical adherence for at least 90 days and posted it on my blog and told my friends about my commitment so that I would be held accountable.  I also emailed the guys about my three biggest fears in starting SCD, and they wrote me back which gave me the motivation and “pat on the back” I needed to get going.  One of the exercises in their book told me to imagine with all my might what being healthy would feel and look like.  This was a very powerful exercise for me – when you’re constantly sick, it can be scary to even hope or dream, but I bucked up against my fear of hoping and imagined what being healthy would be like and decided I was going to make my own personal goals to achieve this state as much as possible.  I started the Intro Diet and slowly learned to cook for the first time in my life (wow did I have some kitchen failures – and one kitchen fire! – but that was my fault).  The book breaks down how to cook each Intro Diet food including peeling, de-seeding, and pureeing.  This process was very time-consuming and overwhelming to me in the beginning so I was very glad to have the pictures to guide me through the process.  Surviving To Thriving really helped me cope with the mental challenges of giving up food and Steve’s stories of cheating and the consequences helped me stay on the Legal path.

The food phase charts and sample menus included in the Surviving to Thriving book were immensely helpful and I lived by them for the first 6 months I was on SCD.  Now I know what I can eat and what I can’t and my list of Legal can eats is pretty small, but my GI tract is improving so I’m content.  I finally have that “unshakable Food Safe Zone” because I listened to my body and followed the food phase charts in the book.  The guys made the process of testing new foods easy to understand with their four day formula and even though the process felt like it took “forever” before I had variety in my diet, I knew that when I got it right I was going to be all set because I was methodical about how I tested my foods.

Journaling?  Ah, that was one of the hard parts for me.  While the guys say right from the beginning that your food journal will be your best friend for trying to figure out what is going right and/or wrong, I had kept food-, poop-, and other symptom-related journals for so long prior to starting SCD that I was really burned out on body-related journaling.  This slowed down my progress and my ability to identify foods that were causing me problems.  When I finally got around to being consistent on my journaling, I was able to really establish that unshakable Food Safe Zone…but not before I got serious about it.

On SCD Lifestyle’s website, there is frequently talk about the Four Horsemen.  I mention them frequently in my blog as well because the guys have identified the major trigger foods for folks who are otherwise doing “everything right” but just not seeing the results they were hoping for.  I’ve been in that camp more than a few times.  Some of these foods (dairy, nuts, fruit, eggs) I was relatively quick to stop eating because of the consequences, and others I hung onto for a long time because I was emotionally not ready to “let go”.  Holding on held back my progress, and if I had listened to Steve and Jordan earlier, I would have felt even better sooner.

The great thing is that every suggestion of theirs that I’ve taken has only lead me up, not down.  They have never steered me wrong thus far, and given how temperamental my body is, I think that’s simply amazing!  My medical case has been impossible for so many doctors to improve, yet some simple – and not-so-simple – diet and lifestyle changes have made a drastic difference.  Has it been easy?  Nope.  I won’t lie; it’s been hard.  But have the lifestyle, habit, and diet changes I’ve made been worth it?  Oh you bet they have!  The fact that I want to even leave my home and bathroom to go to a party I’m planning is evidence of that!  :D

I would have taken months to start SCD 100% if it had not been for Steve and Jordan from SCD Lifestyle, and I would have had much more difficulty emotionally adjusting.  Perhaps even more importantly, I wouldn’t have found the tweaks I needed to get my “tough case” body on the right track because, for me, SCD alone isn’t enough – I’ve had to craft and personalize the diet to my body’s specific needs, and SCD Lifestyle lead me through that process in their book and then in the Advanced SCD Course.

On another note, while Steve and Jordan do talk a lot about SCD because their niche and focus is GI disorders, they’ve also begun branching out more recently into the Paleo community as well and into a broader view/acceptance of making a diet that works for each individual (N=1), whether it is GAPS, SCD, Paleo, or something else entirely.  I really appreciate this viewpoint as I myself have had to add Atkins restrictions to my personalized SCD.  I’m sometimes amazed by how one diet may work so well for person A but utterly fail for person B.  Even Elaine Gottschall said that about 20-25% of people who try the SCD will find that it doesn’t work well for them.  Granted, that leaves the 75-80% who are seeing good to miraculous results if they practice what she calls “fanatical adherence,” but that 25% DOES still exist, and it’s okay to be one of them.

 

Just as a disclosure, I wanted to tell you that I am not being paid or in any way compensated for my time in writing about SCD Lifestyle or for reviewing any of their products.  I’m simply an extremely happy customer who has benefited greatly from their products and likes to write the things I’m passionate about, and SCD is one of them!  I hope that this review will lead folks on the internet to check out SCD Lifestyle for themselves.  Want more information about my take on SCD Lifestyle?  Read here – Why You And I Need SCDLifestyle.com.  Cheers!

Gutsy Girl

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Low Carb SCD with Fructose Intolerance

Ok, whew!  This month has been a whirlwind and it’s been “long time no write”!  So rather than apologize (I just remembered it’s my blog and I have no reason to apologize), let me catch up in summary.

Low-Carb SCD with Fructose Intolerance

One of my biggest fears since starting SCD was that I’d end up having to cut out honey and fruit and the carbs I so love.  I said so many times in my head, “I’ll lose my sanity if I have to give up _______ (list foods here).”  Well, I felt this way about dairy too and I gave up all dairy less than 1 month into SCD (December 2011).  Do I still miss dairy?  Oh you bet – especially my goat cheese!  But I feel so much better for it, so I’ve been a “good girl” and remain dairy free until my body has healed enough to digest casein.

I also felt this way about giving up tree nuts when I learned that my allergies to tree nuts included much more than just almonds.  No nut flour to bake SCD breads or treats which means, for the most part, no breads or treats.  I actually cried for two days about that…then again, I was also having PMS…………  *Shrug.*

There were several other foods and food categories I had to give up after I started SCD, but the fact is that I DID IT and I’m alive to tell you about it today!  :D  And so it is with fructose which is a sugar found in honey, fruits, some vegetables, and in processed “foods”.

Blessings and Curses of the Food Journal

I had fallen off the food journaling band wagon for a while despite its inclusion in my Healing Plan.  I was just tired of thinking about “food food food” and wanted to get on with “life life life”…but had to find out the hard way (again) that getting on with “life life life,” in my case, typically requires being 100% focused on “food food food” so that I’m healthy enough to then focus on “life life life”.  When I don’t stick to my daily food journaling, I lose track of trends and I’m not able to figure out what food or what food category is hurting my poor gut.  I also tend to eat more carbs (fruit and honey especially) because they tend to be faster to prepare or grab on-the-go than my fats and meats.  This, I’ve since learned, can lead me into a flare-up quickly.

Frustrated at being stuck on this current plateau, I went back to food journaling without excuses and saw that honey and fructose were potentially causing me problems (severe bloating still, pain, less-than-friendly Bristol scores).  I guess I just got frustrated enough that I was willing to do whatever it took to move up to the next level of health, even if it meant waving goodbye to honey and my favorite fruits.

Saccharin (Sweet-N-Low) on SCD

So two plus weeks ago I ditched the honey and decided to try saccharin (which is allowed by Elaine Gottschall on SCD) and to re-write the recipes I use most frequently.  I’m finding that there are a few things Sweet-N-Low is useful for, and many more it’s NOT useful for, as the omission of honey from recipes changes their texture.

Now, before someone spends 10 minutes lecturing me on the cancer and health risks of saccharin, please consider:

*  I have literally little to no appetite most days, so getting calories in is extremely difficult – and if it doesn’t taste at least edible, it’s going to be a fight to get it down the hatch.
*  Without enough calories, I feel awful and I get very weak within 3 days.
*  My diet is cleaner than 99.5% of Americans (REAL, non-processed foods!) and I also take very few medications (Rx or otherwise) and typically use all-natural (i.e. baking soda and vinegar) cleaning products in my home, thus reducing my cancer risks.
*  There is a time when benefits outweigh risks, and I believe that time for me is now.
*  Besides, the Sweet N Low ad above gives me hopes that by using Sweet N Low I will get a hunky husband!  ;D

Was THAT “Low Carb Flu”?

As my gut was starting to thank me for knocking out the honey and drastically lowering my fructose intake, I thought I’d feel better.  But I started feeling worse!  It wasn’t my gut that was killing me, however; it was EVERYTHING ELSE!

Exhaustion made me feel like there were 15 pound weights attached to each appendage, it required effort just to breathe, I couldn’t open my eyes more than half-way even though I was awake, and even speaking became more slurred and difficult.    I began sleeping 15 hours per day out of pure necessity.  Crazy carb cravings and three days of migraines were also par for the course.  On the worst days, I felt absolutely DRUNK even though not a drop of liquor was involved.  I took myself off the road on those days, not that I had any desire to go anywhere given how exhausted I was.  I could barely put a sentence together and I would do stupid stuff like stare at lettuce in my hand for 5 minutes, not sure what I was supposed to do with it!  It would have been funny if it wasn’t so pathetic and scary.

I don’t get scared easily about things going “wrong” in my body.  I mean, after all, I’ve lived with this body all my life and I know its ups and downs.  But I do get scared when feeling THIS EXHAUSTED and “DRUNK” goes on for more than a few days in a row.  It’s scary for two reasons – 1) I don’t think any of my doctors would understand how awful I feel just by looking at me and that they would press further to find answers and 2) I have no control of the situation and no idea of the cause.

So more than a week ago I began asking myself, “Is this perhaps an unbelievable case of die-off/herxheimer reaction?”  I went to my favorite SCD website – SCDLifestyle.com – and searched for “die-off”.  This is what I learned:

*  Die-off usually lasts 3-7 days.  Low Carb Flu (Low Carb Adaptation) can last 2-3 weeks.
*  Die-off-like symptoms that last longer than 7 days are more likely either Low Carb Flu or a reaction to a food/supplement.

The Low Carb Flu is basically your body adjusting to utilizing fat as your primary source of energy rather than glucose/carbohydrates.  The body needs time to build up the enzymes it needs to break down and use fat as energy in your body but this process doesn’t happen over-night; hence the flu-like exhaustion and other symptoms which persist and then wane as the body becomes adjusted.

What’s Next?

Well, I started feeling a *little* better yesterday and significantly better today, so I am hoping that this process is nearly finished and I can go on with my new lower low-carb lifestyle without frequent recurrence of this Flu-like beast.

Before going low-carb (especially on days I wasn’t being careful about my ratios of carbs to fat to protein) I could easily average 175 grams of Carbohydrates, 50 grams of Fat, and 60 grams of Protein each day.  Unfortunately, this doesn’t work well with a gut that likes to ferment carbs and a gut that needs lots of fats to keep Bristol scores nice and soft!

My new ratio goal per day is: 75 grams Carbs, 100 grams Fats, 75 grams Protein.  So far I’ve been able to keep my carbs down to 75 grams per day (some hard-core low carb folks go even lower!) with the use of Sweet-N-Low and still feel satisfied.  Increasing my fats is helpful for my gut and, as my body will be using fats for energy, it also will hopefully give me a boost of energy in the next few weeks.

I believe I’m doing the right thing for my body.  I’m always striving to improve my health and super-excited to see what kind of progress will come in the next year or two!  There will be bumps in the road, and adapting to a low-carb diet is definitely one of those bumps.  Knowing when to listen to my body and when to ignore its screaming and just keep pushing through is key.

GutsyGirl

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