Dotyisle’s AS story
I was diagnosed with AS in 1996 after a year of considerable pain, I had right SI pain that made walking and sleeping difficult… actually any time I slept in a position for more than ½ hour that was not to the liking of my right SI the next morning I could not get out of bed. I can still recall the first day I called in sick to work because I could not walk… I never called in sick and my manager was so worried he drove over to my apartment.
Following proper diagnosis I took various medications that typically kept AS at bay. The key med was either sulfasalazine or the enteric coated equivalent (azulfadine). I always had a NSAID on the side as well. I was on the meds for six years… interrupted at times when liver enzymes exceeded tolerable thresholds for my rheumy.
Three times in the six years I had to discontinue my meds for anywhere from 4-6 weeks as my rheumy tried to understand the issues with my liver. Each time I came off the meds my AS pain got considerably worse… right SI pain made walking upstairs impossible, could only sleep on left side and many times had to sleep in a recliner. Low and mid back pain was also fairly bad, good deal of the time it felt like a bat was swung across my back.
Each time I went back on the azulfadine my AS calmed back down… so I managed my AS fairly well over the six years except for the times when I came off azulfadine. Consequently I became fairly anxious about side effects from my medications.
In Nov. 2001 I moved to Phoenix, AZ. Blood tests showed that my liver enzymes again were elevated. This is when I began searching for some answers on the web and came across Kickas. In early March 2002 I made my first post… a question of what med I could take to combat my liver issues. Ironic for me now looking back that I was looking for more meds to control the meds I was taking.
My liver issues did not improve so continued to look for answers on the web and at Kickas. About this time I decided it was time to give the No Starch Diet a try. Can not say that it was something that I was excited about, my bachelor nature meant I did not enjoy cooking and meals were whatever was easy… breakfast cereal and dinners a Lean Cuisine and snacked on pretzels and licorice throughout the day. This was going to a be a major adjustment in my dietary habits. However, a quote at the Kickas website from a seasoned dieter inspired me… it stated, “Eat to live, not live to eat”.
I discussed the diet with rheumy and Primary Care Physician. My rheumy stated there was no evidence that supported the diet… my Primary Care Physician stated it could not hurt, so why not try the diet, he saw no medical concerns surrounding the diet. Everyone is different, therefore anyone contemplating a diet change should discuss with their doctor in my opinion so they are aware of any complications it may present with other medical issues they may have.
I commenced the No Starch Diet in late March 2002… I was very strict at first with my meals having much of the same food over and over since I wanted to know that the diet would work for me. My early diet was much of the following:
Breakfast: Eggs, bowl of frozen fruit (typically mixed berries of blue/ras/black) and some raw veggies… broccoli, celery or carrorts.
Snacks: Carrots, celery, apples, pears
Lunch: Always a salad with tuna
Dinner: Chicken or beef with non-starchy veggies
I responded fairly well to the diet, within a week I was nearly pain free, exception was in mornings had some minor stiffness that relented after a hot shower and stretching exercises. Today I believe it worked so quickly since I was on azulfadine prior to starting diet and this med has antibiotic properties. Within a months time I tossed aside my NSAID (naproxen) and I was living med free.
The diet took extreme discipline for me, resisting all my comfort foods for the first several months was difficult, but living without AS pain was all the reward I needed to continue on with the diet. At times I ran into issues not correctly discerning which foods had starch and which did not… I thought corn and bananas would be safe, but obviously I know today they are starchy. Also learned that many sausage makers add modified starch fillers the hard way, that is to say having AS rear its ugly head. Although I know of the iodine test, I do not test my food… my test is listening to my body afterwards.
Allow I responded well to the diet, I did struggle in one area…. That was finding enough energy. I would could home from work pain free, but zapped and had to eat quite often to function. This I did not understand since others at Kickas did not have the same issue. If you read posts from spring of 2002 you can find numerous posts from I made concerning energy and the diet.
Due to changing my diet and struggling with energy I really questioned if this diet was the right choice for me for me long term, so I decided to read all I could about alternative cures to arthritis, diets, nutrition, supplementing, herbs… anything I thought may help. In all I must have purchased 30 books and read religiously in my free time. From that I learned quite a bit and gave me direction I would use later on that I would benefit from. The books that I believed helped me the most are the following:
IBS Starch Free Diet – Carol Sinclair
Breaking the Vicious Cycle – Elaine Gottschell
Alternative Medicine Definitive Guide to Arthritis – Eugene Zampieron
Probiotics – Natures Internal Healers – Natasha Trenev
Natural Ways to Digestive Health – Stephan Holt
Going Against the Grain – Melissa Dinae Smith
Paleo Diet – Loren Cordain
Despite all the learning, I still struggled with energy. To assist with my issues I began juicing and this did help. However, I found my true answer to my energy issues in the fall, nearly ½ yr after starting diet.
An apple a day keeps the doctor away… but Dragonslayer posted of Edgar Cayce’s 3 days of apples and olive oil to bring you out of an AS flare. Fasting or eating apples for three days was a big hurdle for me mentally, why would I want to restrict food for several days, this is something tree huggers did, not an accountant.
Well, I read up on fasting, asked numerous questions at the site and decided in October of 2002 to give the three days of apples a go. It was not much fun with headaches, an awfully white tongue and some aches and pains, but I made it through the three days successfully and thankful now that I had the courage to attempt. This process improved my energy and I continue to perform apple diets for maintenance issues every several months to maintain my energy. I attribute the improvement in energy to the pectin in the apples, they help to clean out the intestines and I believe allow for better assimilation of what we need to function.
After a half year, the diet was very natural to me now. No longer did I crave my old comfort foods, my taste buds seemed to change their mind what was delicious.
In February 2005 I decided to take my supplementing seriously, putting to work what I had learned early on in my reading. My only regret today is that I did not start this sooner since I have reaped dividends already.
I began taking L-glutamine and probiotic supplements. I take l-glutamine to repair the intestinal wall and probiotic for same reason and also to compete with the Klebsiella bacteria. Although somewhat expensive I have seen the benefits. I believe in the leaky gut theory and that it proliferates AS… healing the gut and correcting dysbiosis have allowed me to eat fringe foods again daily… fringe foods being those that would cause me stiffness if I ate more than once a week… like almonds, yogurt with live cultures, cheese curds… now I can eat these without issue.
Future goals of mine:
- Continue to improve GI repair lining so I can eat easily digested starches (whole grains like brown rice, quinoa etc..)
- Kayak, canoe and camp on regular basis… something I gave up due to AS, have already started kayaking again.
- Continue to improve my energy so I can bike very long distances, there are a lot of great trails in Wisconsin that go on for miles upon miles
- Stay active at Kickas and continue to promote NSD, it saved me
- Stoneyfield Farms yogurt on top of thawed frozen fruit, steamed non-starch veggy and sometimes eggs or turkey patty
- Apple juice
- Salad with either tuna, salmon or pan fried chicken, turkey on top. Olive oil dressing or salsa sauce. Salad may include the following: lettuce, red cabbage, red peppers, black olives, collard greens, kale, celery, carrots, alfalfa sprouts, broccoli sprouts, radishes
- Leftovers from dinner
Dinner (can be some of the following… not typically this is lite.. sometimes just veggy and some fruit… other times larger meal)
- Chicken, turkey or fish… sometimes beef or lamb
- Steamed veggy of some sort… broccoli, kale, collard greens, zucchini, yellow squash
- Pineapple, cantaloupe, honeydew, watermelon
Snacks – dried cranberries, raisons, pepitas, walnuts, almonds, brazil nuts, apples, pears, grapes, cherries, carrots, celery, cheese curds
- Natrens Healthy Trinity (probiotic)
- Enzymatic Therapy (probiotic)
- Calcium (Natures Way or Solgars)
- Vit C (Natures Way or Solgars)
- B-Complex vitamin (Natures Way or Solgars)
- Multi vitamin (Centrum)
- Digestive Enzymes (American Health)
That is my AS journey to date.
The No Starch Diet has saved me from a life of pain, meds caused liver complications and the new biologicals were not available at the time I needed answers. I honestly believe diet is the best measure to control AS if you respond. As for my anxiety over side affects, well that has disappeared naturally.
My advice to anyone with AS, “Eat to Live, Not Live to Eat” and “Keep on kicking!”