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1st Year Auto-Immune Review

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On January 14th 2012, I began the process of eradicating my auto-immune disease and attaining 100 percent health.  While I grow tired of finding the right combination to defeat the cause, I no longer put a needle twice a week in my thigh (Enbrel); now I only take one pill of Prednisone per day.  I’m also closer to finding the root cause(s), not just minimizing the symptoms.  From all the knowledge I’ve learned thus far, here is an overview of the current root cause, managing it, and the steps to remission.

The Root Cause

After taking many tests, my main issue is the digestive system.  Masking the root cause by taking Enbrel for 9+ has manifested additional symptoms such as hemorrhoids, anemia, and ulcerative colitis (UC) / Crohn’s Disease.  Additional digestive system issues include shrinking of the esophagus,  lack of absorbing nutrients, Jejunojejunal intussusception, and ulcers.  There may be other damage, but this is what I have found so far in the 1st year.

“Disease” Management

Before I begin, let’s define an auto-immune disease.  It is NOT a disease.  It is a warning system that says something is severely wrong within your body (similar to the engine light in your car).  If not fixed, something major will happen and if not treated, will lead to a miserable life and/or death.

There are three levels of “disease” management that I currently use:  holistic healing, medical healing, and inflammation management.  Holistic healing includes a modified Specific Carbohydrate Diet (SCD) with a majority of cooked organic food, a variety of exercises (mornings with the Wii Fit+ Yoga/exercises, swimming,  power plate, and ballroom dancing), therapeutic massage and chiropractic adjustments.  Medical healing includes Asacol HD to repair the Ulcerative Colitis / Crohn’s Disease.   Inflammation is reduced to tolerable levels with low-dose (1/2 pill in morning, 1/2 pill at dinner) Prednisone and Omeprazole for acid reflux from the Prednisone.

NOTE:  Taking ibuprofen is not an option anymore.  I was taking one a night for 5 days, 2 for 1 day and was internally bleeding from it.  Hemorrhoid symptoms such as fissures were also coming back.  The only good that came out of it was the best consistent sleep I’ve had all year.

Steps to Remission

As my D.O. (doctor) explains, there is nothing more I can medically do right now to improve the situation.  I need to continue on the medicine described above and do another Colonoscopy / Endoscopy mid-2013.  Holistically, continue to follow the SCD diet and exercise regimen listed above.  As of last Friday, I also found the Naturopath I’ve been looking for.  Within the coming weeks I will probably start taking Water Kefir (video) and then essential oils (high-grade DoTERRA oils that are digestible) to detoxify the body and will allow my digestive system to absorb the nutrients since the Crohn’s Disease prevents this.  Based on the data I’ve gathered, I could see remission in April.

 

Auto-Immune 1st Year Health Review Details

Major Milestones

  • Recapping the 6-Month Review in chronological order, I started off with my Vegan 21-Day Food Reboot + stopped most forms of starch, got off Enbrel for good on February 7th, took many medical & holistice tests, went to Costa Rica, started on an ibuprofen regimen, found out I needed starch (rice),  started an exercise regimen, and was able to expand my starches with potatoes.
  • Rice vs. Potatoes – A Starch Comparison for Auto-Immune Diets (Sept. 3rd) – Finding the reason why I could eat one kind of starch and not another.  Over time I am able to eat any kind of potatoes while I am taking the Asacol HD.
  • My Autoimmune Health 9 1/2 Months Later (Nov. 6th) – Moved away from regular chiropractic care, but added the Power Plate rehabilitation exercises every 1-2 weeks.  Focused more on a new massage therapist who understands auto-immune, exercise routine updated, changing supplements, and reducing ibuprofen down to 1-2 per day.  Due to blood tests & CT scan, I was diagnosed with Crohn’s Disease, IBS, Ulcerative Colitis, and Anemia.   My SED rate went from 101 down to 34 on 8/21/12 with my comprehensive blood test and I no longer need to do the Th1/Th2 test due to the significant decrease in the markers of inflammation (Natural doctor confirmed this with me a month ago).
  • The Benefits of Soluble Fiber (Nov. 9th) – Crohn’s disease can lead to frequent runs to the bathroom and without eating grains in my diet this makes it worse.  In order to help this balance, I needed more soluble fiber.  I found that acacia fiber not only contains pure soluble fiber, but has a prebiotic that helps people with IBS.  The only downside is my body took months to get adjusted to it & I ran into a few flare-ups due to overdose.
  • Anemia and Natural Supplement Fix (Nov. 12th) – Fatigue due to internal blood loss (which I found out later had to due with the ibuprofen), I developed Anemia, lacking enough healthy red blood cells.  I found that by taking  Rainbow Light Plant Source Iron, I was able to help manage the Anemia.  I still have iron saturation issues, but that is more to do with the Crohn’s Disease than the iron supplement not doing it’s job.
  • Sugar Alternatives (Nov. 29th) – Use black strap molasses rather than cane sugar, Stevia instead of artificial sweetners, and coconut nectar instead of agave.
  • My Autoimmune Medical Breakthrough – Chronicles the history of my holistic and medical history of 2012 and leads to my break-through procedure:  the Colonoscopy and Endoscopy.  Along with specific medications and the Specific Carbohydrate Diet, I doubled my quality of health.  My range of foods could increase along with an increase in exercise and social activities.  My urgency to go to the bathroom (spiked adrenal & cortisol levels) in the middle of the night went away (battled that for more than 6 months), people told me I looked better, and became overall more productive.  Eventually I had to reduce the dosage of the Prednisone & now use just enough of what I need.  Without it, symptoms like fissures, canker sores, lack of sleep, pain, and stiffness come back.
  • End of 2012 Results – Besides recapping my experiences in 2012, I enjoyed a 4-day cruise and tested out my improved health.  I was able to dance when I wanted, walked everywhere on the floating city / ship and I only had nightly calf cramps (after 1st night it went much better).  I experimented with many foods (some that I’ve not had in over 6 months) and did not receive any major flare-ups!  For the first time in 2012, I was able to go where I wanted and socialize without pain interfering.

Tests Taken

  • After the 6-months of test data, I took updated comprehensive blood tests, Anemia tests, Crohn’s / IBS / Ulcerative Colitis (UC) and they all came back positive – feel free to review the auto-immune tests in detail.
  • Overall the comprehensive tests got better and the test at the end of the year almost all markers within normal range.  The only concern still lingering is iron saturation (due to the Crohn’s), RDW and Neutrophils are high, and SED rate / C-Reactive protein are high (markers of inflammation).  To put this in perspective, my SED rate on 4/18 was 101; 8/21 it was 37. Although this is a huge improvement,  my test on 12/14 showed my SED rate at 38.  If the normal range is between 0-15, I still have work to do to get my inflammation to normal ranges.

Symptoms / Diagnosis

Included below are all the symptoms listed from my 6-month review and afterwards.  I’ve crossed out the symptoms that have not occurred after my 6-month review to the end of 2012.

What I’ve Learned

When you live, eat & breathe a healthy lifestyle, you pick up on some good information.  Listed below is some of what I’ve learned after my 6-month review.

Where Do I Go From Here?

As mentioned above in the “Steps to Remission” area, I need to continue to take my low-dose of Prednisone, Asacol HD to improve my gut, exercise, at eat the modified SCD diet. As of last Friday, I also found the Naturopath I’ve been looking for.  Within the coming weeks I will probably start taking Water Kefir (video) and then essential oils (high-grade DoTERRA oils that are digestible) to detoxify the body and will allow my digestive system to absorb the nutrients since the Crohn’s Disease prevents this.  Based on the data I’ve gathered, I could see remission in April.

My Autoimmune Medical Breakthrough

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Autoimmune Medical Breakthrough and Holistic History of 2012

Imagine driving your car from New York to Chicago at night.  You know where you need to go, but you can only see a short distance in front of you.  By faith I knew this issue was gut-related, but I had no idea how to fix it.  Here is how I arrived to my medical breakthrough in 2012:

Healing Holistically

In the beginning, I changed my diet completely by doing a 21-day reboot (A – see diagram below).  Through this Vegan regimen, this allowed my system to start detoxifying what I thought was healthy for so many years – calorie-counting, low-fat, Standard American Diet (SAD).  Within 3-weeks  I lost 14 pounds and continued thereafter.  After 3-weeks, my sustainable diet focused on the No-Starch / Low-Starch Diet (NSD/LSD) and I stopped eating Vegan completely.  Throughout 2012, adding supplements, avoiding certain foods, and taking tests improved my condition over time.

The Damage

Coming off Enbrel (9+ years) was (what I could imagine) getting off of heavy drugs like cocaine.  Like a dam, my immune system was being held back and when I stopped taking Enbrel, the floodgates opened 3-4 weeks later.   I continued to have serious symptoms which tested me more physically, mentally, and spiritually than any other time in my life and found solace in God, the love and care of my parents, and taking Ibuprofen while my condition slowly improved over the next 6 to 9 1/2 months.

The Autoimmune Medical Breakthrough

In April 2012, I took a series of blood tests that showed off-the charts inflammation markers (SED rate, C-Reactive Protein, etc.).  At that time it was hard to pinpoint exactly what was going on until my body got over the Enbrel effect.  As the months went by, I learned more about the foods I should not eat (food intolerance – Cyrex Test), foods I needed to focus on (vitamin deficiency – Metametrix Test) used supplements to build me back up.  On the 8/21/12 comprehensive blood test,  my D.O. had enough comparison data (EX. SED rate went from 101 to 37) to see my Hemoglobin/Hemocrit was low and might be sign of anemia.

Based off the 8/21/12 comprehensive test, I saw a Hematologist and discovered I have slight anemia (TEST DATA).  The 1st page shows the iron deficiency, 2nd shows the out-of-range blood levels, 3rd page is blood in stool (internally bleeding) (D), and the last shows the percentage off of the normal range with anemia.  Although my Hematologist only focused this issue on my hemorrhoids, my D.O. and I both agreed there was more going on and sought out a Gastrointerologist.  Listed below are the three tests that have lead me to my autoimmune medical breakthrough:

My Autoimmune Digestive System Diagram
My Autoimmune Digestive System Diagram
  • Prometheus IBD sgi Diagnostic Blood Test (RESULTS – 1st Page)- the blood test shows focus on Crohn’s Disease – inflammation of the large and small intestine (colon).
  • CT Abdomen and Pelvis Scan (RESULTS – Page 2-3) – In this test, you drink a bunch of barium, get injected with iodine, and have a balloon device in the rectum area.  The CT scan reveals ulcerative colitis and compression of the distal esophagus (B).  Other info on the CT scan were confirmed by doctor as normal or a part of the inflammation issue:  Cysts in kidneys, the Jejunojejunal intussusception, and the fat surrounding descending colon (C).
  • Colonoscopy and Endoscopy (11/19 procedure, follow-up every 2 weeks) (A-D) – NOTE: I am providing preparation & procedure details so anyone who is thinking about doing this understands the sacrifice they need to make for the results.
    2 days prior to the procedure, I could not be on any of the ibuprofen I had been taking for most of 2012.  I planned 2 1/2 weeks to get from 2-3 ibuprofen per day down to 1-2 per day.   The day before I fasted (food) and had to drink 4 liters of this:

    Electrolyte Solution and Measurement

    4 Liters of PEG 3350 Electrolyte Solution

    I eased into this by taking 1 glass at 2,3, & 4pm.  From the hours of 5-10pm I needed to take a glass every 15 minutes.  As you can imagine, this flushes out your system by going to the bathroom many, many times (so much so your bottom gets raw).  Next morning at 8:30am I had to finish off with an enema and I was prepped for the procedure at 11:00am.

    Before they begin the procedure, I was put under anesthesia and did not remember a thing.  I woke up feeling a “next-level of health” better without any anesthesia effects, no food, and no water.  I woke up drinking some water, driven home by my parents and finally eating some soup around 1-2pm.

    The Colonoscopy and Endoscopy Results

    The doctor had taken some biopsies and confirmed I had Ulcerative Colitis (U.C.) and Gastritis (which may have been caused by taking Ibuprofen throughout the year) along with Grade 1 hemorrhoids (do not prolapse).  Also I tested negative for H. Pylori (gut bacteria that causes inflammation) and may have gotten rid of this using the Pyloricin supplements I took in late February.  Along with a modified / healthier low-residue diet for two weeks, I need to take these medications:

    • Prednisone – Take 3 tablets every morning for 2 weeks.Take 1 tablet in the morning and one at night for the next 2 weeks (12/4-12/17).  Evaluation 2-weeks later (12/17).  This basically replaces the anti-inflammation in ibuprofen, I feel phenomenal throughout the day and I can start to do the normal activities I once dreamed about when I was at my worst.  In fact, I even get surges of energy late into the evening (EX. cleaning my bathrooms like a mad man from 9-10pm – I never do that…never).  At around 2am it wears off & it becomes difficult to sleep.  Mornings were the worst (especially days 2-4), but got tolerable afterwards (inflammation around 7 out of 10, days 2-4 & 4-5 after day 4).  Reducing the dosage will lessen my side effects (increased acid production, runny nose, spikes in energy).  Prolonged usage is not good and hopefully taking one in the morning & one at night will keep things even and I can get better sleep.
    • Omeprazole – Because of the acid reflux & production with the Prednisone, this drug acts as an acid inhibitor similar to Prilosec OTC.  Take one in the morning and I usually have to take an hour nap after I eat breakfast due to drowsiness so I can start my day right.  Once I get off the Prednisone, I get off Omeprazole.
    • Asacol HD – For the treatment of moderately active ulcerative colitis and prevents it from recurring.  I take 2 in the morning and 2 at night with meals.  Once I get off the other two drugs and my symptoms are done (formed stools, no mucus, no inflammation break-outs), I can stop taking Asacol HD.

The Benefits After the Procedure

In the 2-weeks after the procedure, I’ve seen major improvements mentally and physically.  Although these benefits are amplified with the usage of Prednisone, there are times when I could tell it wearing off.  As each week progresses, I am feeling more of the benefits below with or without the Prednisone in my system.

  • Day 4 – 2 weeks after the procedure, my inflammation went down to tolerable levels in the mornings and I’m completely off ibuprofen.
  • Day 4 – 2 weeks receiving major boosts of energy and mentally clairvoyant throughout the day.  I work out 3 times a week at my local gym and have seen major gains in strength.  Spikes in energy are too much in the evening time and hard to sleep.
  • Although I’ve only tried this today (12/4), moving the Prednisone dosage to 1 in the morning and 1 at night allows me better inflammation coverage (along with less soreness & stiffness), better sleep, and no spikes in energy levels.
  • Getting in/out of bed is so much easier now & I don’t need to use the rope to get out of bed (although it does make it easier).
  • My weight is gradually increasing.  As of 12/3, I now weigh 131lbs, 18.33 BMI
  • Wider range in foods.  For example, I have tested and can now eat waxy potatoes (ex. red-skin potatoes) where I could not before.  More details on my new diet below.
  • My shoulders are not as sore getting out of bed during the night.
  • No need to fast, Colonics or anything to flush out my system per doctor’s 2-week follow up suggestion.
  • I don’t have the urgency anymore to go to the bathroom in the middle of the night.  My cortisol levels must be normalizing now (see spike on page 2 of Figure 1 graph to see the spike from midnight to 8am – test done on 4/18/12).
  • I’m able to sleep on my side up to 2 hours maximum.
  • Range of motion in my neck is finally better.  During my massage on 11/20 (1 day after the procedure), my massage therapist noticed a major improvement in my neck’s range of motion.
  • Other symptoms I didn’t mention above & are listed in my 6-month review are either gone or haven’t been tested yet.
  • Friends say I look better.  One comment that stands out is “you don’t look like a prisoner from a POW camp anymore”.
  • Mentally I’m much happier because I can do much more; be more productive at work (or making this blog), seeing people without always needing to do stretching exercises, sitting down at dinner with a friend without needing to get up due to pain, working out, dancing, and knowing that I can start working on my bucket list.  Lastly, I’m happier because I know that the faith I had in God was not in vein.  He directed my path and the hard work I did is paying off.

Symptoms Still Needing to be Resolved

  • I’m slightly limping due to inflammation pinching my neve(s) in my hip areas.  But the pain is far less than when I started exercising back in early July.
  • Bowel movements are still muddy and I still have mucus.  In order to get off the medicine, the bowel movements need to have form and I can’t have the mucus.
  • Need to go to the bathroom 3-5 times a day.  I need to be one in the morning and one at night.
  • I am still not able to have a full night of sleep and battling stiffness / soreness.  However, the pain getting out of bed is much less and am able to get back into bed quicker.  Sometimes I am able to do exercises within the bed & go back to sleep.  I usually wake up 2X per night.
  • Although I cannot confirm, I still have to take an iron supplement for my anemia & a B-complex supplement detailed from the Metametrix Test (taken on 6/6).  When the supply runs out of the B-complex, I will test & see if I need anymore.

New Diet Plan – Specific Carbohydrate Diet (SCD)

During my 2-week follow-up, I explained how I use a modified version of the low-starch diet (LSD).  The doctor gave me a diet plan they follow for people with U.C. / IBD / Crohn’s called the Specific Carbohydrate Diet (SCD).  Both utilize the same theory where eating specific foods cause bad bacteria to grow.  The difference is which foods these diets choose from.  In most cases people modify the SCD & NSD / LSD diet based on food intolerance tests & whether they flare-up (autoimmune kicks in & inflammation spikes).

Listed below are SCD foods to avoid and foods allowed (via WebMD):
NOTE:  I will modify this list based on my food intolerance tests.

The following foods are allowed in the diet:

  • Vegetables (except canned)
  • Legumes (except the ones noted below)
  • Unprocessed meats, poultry, fish, and eggs
  • Natural cheeses (except those listed below)
  • Homemade yogurt fermented at least 24 hours
  • Most fruits and juices without additives
  • Nuts, peanuts in the shell (past issues where peanut got stuck in the colon), natural peanut butter
  • Oils: olive, coconut, soybean, and corn
  • Weak tea and coffee
  • Unflavored gelatin
  • Mustard and vinegar
  • Saccharin

Foods and ingredients not allowed on the SCD include:

  • Sugars: lactose, sucrose, high-fructose corn syrup, fructose, molasses, maltose, isomaltose, fructooligosaccharides (FOS), and any processed sugar – my list of sugar alternatives are safe for me to eat in moderation.
  • All canned vegetables
  • All grains: anything made from corn, wheat, wheat germ, barley, oats, rye, rice (my results), buckwheat, soy, spelt, and amaranth
  • Some legumes: chickpeas, bean sprouts, soybeans, mung beans, fava beans, and garbanzo beans
  • Starchy vegetables: potatoes (tried 3-4 days ago and no issues), yam, parsnips, seaweed products (eaten plenty of sushi-wrapped Nori seaweed with no issues), agar, and carrageenan
  • Canned and processed meats (I buy Wild Alaskan fish and I’m fine)
  • Dairy: milk, milk products, ice cream, whey powder, commercial yogurt, heavy cream, buttermilk, sour cream, and the following cheeses: ricotta, mozzarella, cottage cheese, cream cheese, feta, processed cheeses, and cheese spreads – for me, the more processed, the more chance of a flare-up.  The lactobacillus helps my digestion.
  • Canola oil, commercial mayonnaise (I use Soy Free Vegenaise), commercial ketchup, margarine, baking powder (I use 1 part baking soda to 2 parts cream of tartar), and balsamic vinegar
  • Candy, chocolate (small amounts are fine or homemade with cacao powder), carob
Food Testing After the Procedure
Over the past few days, I have introduced new foods to see how my system would handle.
  • Chicken wings (removed fried outer area) with bleu cheese dressing – no flare-ups
  • Jambalaya pasta over Rice – no flare-ups, slight energy drop afterwards.  Offending food might be in the mild Cajun cream sauce.
  • Red skin potatoes (homemade) – no flare-up
  • Peppermint Breakfast Date Brownie (Local baker from farmers market) – Ground dates, butter, unsweetened chocolate, almond milk, eggs, ground almonds, sweet rice flour, tapioca flour, vanilla, raspberry vinegar, cocoa, peppermint extract stevia, salt, baking soda – took for dinner, flared up at night & throughout entire next day.  If I had to guess it was the rice or tapioca flour.

What’s Next?

  • To celebrate the hard work done this year, I leave for a 4-day dance cruise tomorrow.  It will be the first time I have no control over the food I prepare and the first time I will be testing out both my dancing and sea legs.  Good timing?  Nope, God’s timing.
  • On 12/17 I will also have a comprehensive blood and anemia test done and reviewed.
  • Also on 12/17 I have my 2-week follow up with the gastroenterologist.

Six Month Review

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Auto-Immune / Ankylosing Spondylitis Six Month Health Review

Major Milestones

On January 18th, 2012 I started, by faith, a diet that would not only eradicate my Ankylosing Spondylitis / Auto-immune disease, but start the process to 100 Percent Health (reaching the potential God has for my life).   Included is a listing of all the things that happened from 1/18/12 – 7/18/12:

  • 21-Day Reboot  (January 18th) – 3 week start of the “no starch diet” (NSD) + transition to being a vegan.  I lost over 10 pounds during the reboot and I ate the most food I’ve ever eaten in my life.  NSD was the only diet I knew that would fix my auto-immune disease.
  • Traveled to Venice on February 4th – April 12th .
  • Last day I took Enbrel  was on February 7th.  This is the medication that stops the auto-immune disease from attacking the body.  Lots of side effects  and only takes care of the symptom, not the cause.  The auto-immune diet was made to replace Enbrel & take care of the root cause of my condition.
  • Autoimmune Disease and Inflammation Treatment Seminars on February 27th.  Saw immediate improvement after taking Gut Repair 1 & Pyloricin.
  • Height of my inflammation & unbearable pain was mid-March  (click “next” to review each week of progressive pain). Compounding the issue was not going to the chiropractor enough.
  • My 1st dessert  from a restaurant was on March 16th.
  • Added more meat (protein) to my diet, s witched to the “low starch diet” (LSD), and modified supplements  after nutritional consultation on March 16th.  MD suggested to add more meat due to muscle / weight loss on April 12th.
  • 1st encounter with starch  on April 22nd – no effects.
  • Results (see “Off of Enbrel” blood test below) from my D.O.  on May 2nd revealed high inflammation and elevated / depressed levels other other test markers (to him he was not concerned).
  • Costa Rica!  May 4th – 11th was able to zip line & act like Superman…for a minute  and enjoy the Pura Vida lifestyle .
  • Food Intolerance List from the Cyrex Test and balancing immune system (Th1 / Th2) on May 22nd.  I’ve been eating eggs for 15+ years and learned they were damaging my body.
  • Started Ibuprofen regimen instead of taking as-needed on June 7th.  Without it, I could not control the inflammation & pain & do my work, sleep as much, and do daily activities.
  • Anointed at church on June 10th.
  • Started wearing  Sole Support orthotics  on June 13th.
  • Metametrix Test and Hair Analysis results were in and on June 19th I discovered that I NEED STARCH .  It took me 5 months to realize that my initial diet was over with and I changed.  I made a daily journal to confirm switching form NSD / LSD to approved starches (rice & potatoes) from my Cyrex test on 6/18 – 6/26.
  • Chiropractic X-Ray review on 6/19 showed my lower back (where Ankylosing Spondylitis starts fusion) disc spaces increased!  This result is not typical and confirms what I am doing (chiropractor & nutrition) are on the right track.
  • Lowest weight reported at 129.5 lbs. and BMI of 18.12 on 6/26.  Before starting the diet I weighed 156 lbs./ BMI of 22.07 .
  • Took a Segway Tour on 6/30 testing my physical limitations.  Although fun, it took me 2 days to recover.
  • Finally able to start an exercise regiment (chiropractor, swim, walk) on 7/2, details of 1st week results 7/10.  It started allowing me to bend over and pick things off the floor with my fingers, not my feet.
  • Added potatoes (my other big starch) to my diet , corn starch + adding variants of rice (rice pasta, rice milk, etc.) on 7/10.

Tests I Took

Out of all the tests I took, the ones that made the most difference in my life were the Cyrex and Metametrix tests.  Click on the name of the test to see the company’s web page or click “SEE RESULTS” to see my test results.

Symptoms / Diagnosis

These past six months have been the hardest on me physically, mentally, and emotionally.  Listed below are most of the symptoms and diagnosis from the past six months.

What I’ve Learned

Live, eat & breathe nutrition / health and you pick up on some good information.  Listed below is what I’ve learned and (in some cases) how it applied to my life over the past six months.

Where Do I Go From Here?

At this point, I cannot consider taking Enbrel again knowing what I know and feeling better each week.  While my lifestyle is not 100 percent, I make gains each week.  I will continue to report 2 to 3 times per month based on any new developments in my health and learning.

Simple phone call “check-ups” to diagnosing my conditions, I deeply thank those who have helped me from the bottom of my heart and spirit.  If you know anyone with an auto-immune condition, please pass this blog post on to them.  You might just save a life…

With Love,
Brian

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