Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; How Long from Pain Symptoms to Remission

From this blog post, I'm trying to determine how long it takes someone from the onset of pain to diet start (specifically no gluten or wheat) to finally remission.

Example: I started feeling AS symptoms in 2003, started treating with NSD in January 2012, and am in remission February 2013.

I understand there are a lot more variables involved, but I want to keep this simple for the time being. If you are in remission from NSD/LSD/SCD/GAPS/Paleo/Etc. (no wheat / gluten), please respond based on the example provided. I'm hoping enough responses will lead to a general timeline it takes to get to remission. Thanks.

2000. Onset of SI pain, sciatica, started seeking medical and altnerative slutions for the pain, doctor, phsyical therapy, accupuncture, chiropractor, wasn't happy with any treatments. (I have memories of some back & hip pains before this, but 2000 was the major onset)


2007. Major GI, Colitis came on. Had to stop eating foods, went on super minimal diet of millet, potatoes, tea, a few steamed veggies for a month. Learned about benefits of going gluten free, so started gluten free diet. Saw many doctors during this time, a GI specialist, etc, was diagnosed with "IBS" and left at that. I continued to research food allergies, also gave up dairy (hardly ever ate dairy previously), and eliminated refined sugar. Pieced together a diet.

2010. GI issues started to hit me really hard again. Through all the years I continued to expreience horrible back pains, off and on, but figured I was just stuck with that for life. I found the SCDiet. Felt really great improvement in my gut by giving up grains. I had already naturally eliminated corn & soy through personal testing prior to this. Did very stick SCDiet for 6 months, but was still getting crawly and sharp pains in legs, back, and ulcer feeling in gut. I look back and blame the homemade yogurt and bananas I constantly ate on that diet.

2011. A really great chiropractor suggested I try a starch free diet and diagnosed me with Ankylosing Spondylitis. I found kickas.org. Started NSD in fall of 2011.

2012. Summer, after major juice fast, and continued NSD, really felt a break through. Was able to get my body our of bad flare through juicing, continued to feel like I was on the right track. No more GI pains or horrible back, no more fibromyalga like pains.

2013. Present. Feeling really great. I start off everyday with a huge amount of energy, and drink my superfood smoothies, eat my anti-inflammatory foods, and power through the day. As the evening approaches, I start to run out of energy, and usually around 8pm, I just want to collapse in bed. I usually have a hunchback that appears every night after I overdue it. I feel like I am now living with AS in the best harmony I can. I just don't have the same amount of energy I used to years ago, to outrun it. Overall, I am very happy with where I am at in my progressive healing. I could easily stay here forever and be happy, but I continue to see improvements, so it's wonderful!!

Took me about 2 months to be pain free. I was strictly no starch/ no dairy from the start. I didn't stick with it more than 2.5 months after that but I'd say the results happened fairly quickly.

Hello, brianzajac:

It took me about four months to realize that the dietary approach could work, but another two years to finally do the Cayce 3-day apple diet twice in a month and establish total remission due only to diet, eliminating all starches and most dairy.

Over the ensuing years, I have been able to heal my tract enough that I can now tolerate starches, but I treated AS using the combination of NO NSAIDS+NSD+antibiotics+aggressive supplementation for many years.

I achieved total remission before I had to have surgeries to correct the problems so many years of improper treatments caused me, and I still deal with the damage, but I have been in total remission (from 'active AS') since 2004; 33 years after onset of first symptoms.

HEALTH,
John

Great question, what a good idea to gather information like this for your blog.
About 6 years ago, I was in rough shape. Really exhausted and in all kinds of pain. Just giving up gluten made a huge difference. Finding this site and Sinclair's book helped on top of that. Regarding remission, I will say that it is a dream of mine to be truly in remission, like some people express. On the other hand, I have worked hard to have a kind of graceful acceptance, where I accept myself, AS and all. I find each day brings its challenge with regards to this delicate balance. Compared to how I could be, I'm darn lucky. Perhaps there is hope for even more improvement though. So, my answer is incomplete and vague at best, but did want to chime in.

Hi Brian,

I was diagnosed at the age of 28 with full on lower SI pain. We didn't know a darn thing about diets back then (I am not 55). I was put on Sulpha for 4 years and went into spontaneous remission until the age of 51. I don't know if that helps or not, just throwing it out there.

Hello Brian,

June/July 1991 - First AS symptoms in college left SI... symptoms disappeared for 4 years.

July/August 1995 - AS reappears in right SI and low back and stays for good.

August 1996 - diagnosis of AS... start NSAID and Azulfadine - as long as stay on azulfadine AS is very manageable. At times had to come off of meds for liver.

March 2002 - finally have to come off of azulfadine for good, switch to NSD diet.

April/May 2002 - diet effective enough drop NSAID

if you understant remission by not needing nsaid's - it took about 1 year on a modifiect nsd/scd diet.

I would not call where I'm at 'remission', but a stage where 'I don't need NSAIDs to go through a regular day':

Mild inflammatory symptoms off and on from pre-teens. Neck issues from age 20 onwards, IBS from age 30 onwards, S/I problems at age 36, full blown flare at 37.

Three months after the mega flare, on strict NSD & no dairy, I dropped the Naproxen.

After 6mths of NSD: back at work, able to sit for 7 hours.

18 mths of NSD/AIP: some more intense activity like mountain biking and
running (once a week, but always needing 400mg Ibuprofen x3 a day to recover).

24 mths of NSD/AIP & Ldn: improved stamina, energy, mood.

Hopefully it keeps going

I'd say it took me two to three months to be asymptomatic. One wrinkle in my experience is that I started first with acupuncture and had pretty amazing results. However, I could not sustain the benefits of acupuncture until I adopted a no starch diet. I no longer require acupuncture to manage pain ever since I adhered to a strict NSD.

The three biggest factors that I believe helped get me to a better place faster than others were the fact that my x-rays were clean (I hadn't suffered severe AS symptoms long enough where there was 'permanent' damage in the SI joints), that my acupuncture treatment really helped accelerate the healing/recovery process, and that I was very, very strict with my starch embargo.

This may be semantics but I differentiate being asymptomatic from being in remission. I interpret being in remission as not having to do anything out of the ordinary to achieve asymptomatic bliss. I know if I eat the wrong things, I will be in pain. I interpret this to mean that the disease is still active, I've just found a way to successfully manage it. Now...if I can eat a meal of fried chicken, french fries, fried donuts, pastries, and apple pie without any pain...then that's remission. It's semantics, but just the way I interpret the word remission...