Tuesday, June 30, 2009

Aging, illness and death are treasures for those who understand them. They're Noble Truths, Noble Treasures. If they were people, I'd bow down to their feet every day.
- Ajaan Lee




Managing My Ankylosing Spondylitis (pronounced ankle-low-zing spond-ill-eye-tiss)

I was diagnosed (both chronic sacroiliitis and HLA-B27 positive) at the age of 42 in April 2006. Before that, I was in chronic pain for 1 1/2 years. Before that, I suffered a few flares, maybe one every decade of my life, that usually lasted a few weeks, and went away with rest or a visit to a chiropractor. Usually they were caused by running or jogging or some other high impact activity. I had tight hamstrings my entire life, but not any more since I eliminated starch. Tight hamstrings is now one of the first signs that tells me I have ingested some hidden starch in something I ate.

Within 6 months of being diagnosed, I began to figure out how to manage my symptoms (inflamation in sacrum area causing pain in hip, butt, hamstrings, legs, without medication, by eating a No Starch Diet.

Natural Healing with the LONDON AS DIET

***Start a food journal, include everything you eat, your pain levels, your activities, your meds, etc***

AS, Digestion and the HLA-B27 Gene.......

This gene is handed down, primarily from ancestors of the Northern Hemisphere; Australia, England, Ireland, Sweden, Finland, Scotland, etc.

AS is a chronic and progressive inflammatory form of arthritis that mainly affects the joints of the spine (vertebrae). Inflammation, swelling and irritation cause back pain and stiffness. Over time, people living with AS tend to stoop forward. This leads to a rounding of the back. In severe cases, vertebrae may fuse together causing the spine to stiffen. This results in a major loss of movement. I don't know of anyone else in my family who has been diagnosed, but I know some who have suffered similiar symptons, unfortunately they are no longer here to be tested.

Molecular Mimicry - AS is an auto-immune disease. My immune system is attacking itself because the HLA-B27 gene is identical to a bacterial called Klebsiella. Klebsiella bacteria feed and multiply on undigested starch, my immune system makes antibodies against these microbe and some of those antibodies will also have activity against the HLA-B27 gene, thereby acting as tissue damaging autoantibodies, causing inflamation and pain throughout my joints - hence the need to abstain from starchy foods.

In the early stages of AS, my immune system had become an expert at responding quickly, killing off my own white blood cells, what it mistakes for this bacteria. If I go one meal without following the Low Starch Diet, my body quickly goes into a flare, causing inflamation and pain. Just a lick or bite of any food containing starch (gravy, chocolate chip cookie) and I am a cripple for about 3 or 4 days (till all the starch is digested).

By following this strick diet, I can prevent the progression of this disease and the pain that comes with it. I can stop my immune system from reacting without the use of biological medications, which would compromise my immune system, and cause me to suffer other diseases. And I can stop the inflamation without the use of NSAID's, which cause stomach upset and bleeding ulcers (and heart attacks!). Although I still have to live with the damage already done to my joints, I can prevent further damage. By doing this without the use of medications, I do not have to deal with the added side effects.

Foods to Avoid

All obvious high starch foods. Breads, cakes, cookies, pasta, rice, potatoes/root vegetables, dried beans, corn, wheat, grains, peanuts, etc. Yes, this means pizza, burritos, sandwiches, chips, etc. All known starches. All my favorite foods.

I felt better after about 4 days after starting this diet, when all starches I ate previously were digested from my body. I believe it was safe then, to stop taking my medication, but I wasn't brave enough for 10 days (I was affraid to stop - affraid the pain would come back).

Foods Proven to Aid Digestion and Help Heal the Gut

Lacto-Fermented Sauerkraut adds healthy flora (live cultures) which will help my digestive system work more efficiently. If you prefer to make your own sauerkraut, try this recipe. Take 1 Tablespoon of the sauerkraut with each meal.


Foods to Figure Out


Low or hidden starch foods. Read all labels on processed foods. Watch out for addiditives, modified starches, corn syrup, etc. in processed foods and supplements. Some foods may contain trace amounts of starch, and not be listed on the ingredients, such as shredded or sliced cheeses, so I don't eat any processed foods. Supplements must be starch free.

Use a drop of iodine to test foods, anything with starch in it will turn black.

Most fresh veggies and fruits are safe when raw and picked ripe, but starch is released when cooked. Apples, bananas and imported fruits cause the most problems. Pectin (found in some yogurts) has caused me to become inflamed.

When I have been pain free for a while, I experiment with foods, and see what my body can tolerate. I may suffer 2 to 4 days of inflamation in my sacrum from eating a food my body cannot tolerate, but if I don't go into a flare, I know the food is safe for me to eat. I can't live with the pain, so during these times I rely on Medical Marijuana, available locally at Blue Heaven Coastside, as most pharmaceutical medications contain starch and cannot be tolerated. I use a Vaporizer, which eliminates 95% of carcinogens from smoking, and because edibles are out since I can't tolerate the starch or sugar needed to bake them. One starch free, over the counter pain reliever I can use in a pinch is Aleve Gel Caps. But I use these NSAID's in strict moderation, as I still have not healed from the damage they did to my stomach when I was over-using for the 2 years before I was diagnosed.

Some foods such as cocoa powder, citrus (has starch in the white pith), pectin (used in some yogurts) and almonds with the skin on and root vegetables, I can tolerate occasionally, but if I consume on a daily basis, I will end up in a flare. I eat these foods in moderation only. Spices are starchy and can only been eaten in very small quantities.

After 2 years following this diet healing has taken place. I am now able to tolerate moderate amounts of starch, without going into a major flare. No high starch foods such as wheat or grain, but some starchy vegetables now seem to be OK, such as citrus, potatoes, almonds, more spices, etc. I have discovered I can tolerate long grain brown rice (less starchy then short grain) that has been prepared properly - rinsed till the water runs clear, then soaked all day in chloramine free water, and then cooked slowly, for at least 2 hours in a mineral bone broth. This makes the rice more easily to digest. See the cookbook Nourishinig Traditions by Sally Fallon for more detailed instructions. Unfortunately, consuming rice has caused the fungus overgrowth in my ear to return, and can only be eaten in strict moderation.

STARCH CONTENT OF FOOD this list can be used a guide when choosing safe foods.

Raw vegetables - the starch is locked inside the vegetable cells and passes thru our bodies locked away in the vegetable cells and is removed as waste.

Cook vegetables
, the cells are broken and the starch is released.

I starting off by eating only raw vegetables. After I was pain free for a while, I started to experiment, to see what cooked vegetables my body could tolerate. I have not found any vegetable that I cannot tolerate. Although, some can only be eaten in moderation, such as fava beans, winter squash, potatoes, beets. I try to eat mostly organic, locally grown produce, from a farmers market or health food store.

MOVEMENT

Lifestyle Modification - Be cautious of all physical activities. Rest between activities, applying heat or ice therapy. Learn to say NO. Take care of yourself.........no one else will.

Contact a Physical Therapist for an appointment, while starting these exercises

Bike - as long as I keep my butt on the seat, even when going up hills, my sacrum is not effected as I am using other muscles.

Walk - Focus on core. Keep tummy tight.

KNOWLEDGE IS POWER

See my list of Helpful Resources to the right, especially listen to this interview with Carol Sinclair, author of the Low-Starch Diet Book.

MIND BODY CONNECTION

There are many well-known pathways within the brain and central nervous system by which higher cognitive and emotional functions can modify the perception of pain and increase healing. The systems perspective on pain opens the door for many different possible ways to use your mind intentionally to influence your experience of pain and increase healing.

My Favorite Resources for Healing

Full Catastrophe Living and the Guided Body Scan are great tools to guide you in using the wisdom of your body and mind to face stress, pain and illness.

The Twelve Steps of Compulsive Eaters Anonymous-H.O.W., is specific group of Overeaters Anonymous that abstains from sugar and flour. Meetings can be found all over the world. This has been an amazing resource for help with sticking to my diet to allow for natural healing. For more information read, Twelve Steps for Overeaters, An interpretation of the Twelve Steps of Overeaters Anonymous

23 Comments:

At 6:42 AM, Blogger Daniel J. Neeley said...

Lots of good suggestions, thank you. The no starch diet is pretty intriguing; my doctor hadn't mentioned anything about it. I'll have to learn more. -Dan-

 
At 1:21 PM, Blogger Jeanne said...

Hi Dan. Not too surprising, most doctors don't acknowledge the benefits of the diet. I hope you will give it a try. Let me know how you do.

 
At 12:37 PM, Blogger Unknown said...

Hello Jeanne,

Kitchen Gardeners has been interesting for several years. I just joined in, somehow noticed the gardens and food supply you have created, and then found your in-depth account of how you are dealing with this health challenge.

Congratulations on providing such lucid and useful information, which I will read again as useful, intuitive info for me also.

This year I decided to eat to get rid of some of the effects of sedentary work and the aftereffects of some sedentary travel modes. And I tried to factor in everything I knew and had observed my healthy, long-lived forebearers to practice. :-)

This led close to your diet, and eating to avoid any inflammatory effects as best I knew how. The first "rule' was no sugars or simple carbs, plus lots of fresh greens and oranges in produce. In that easy mode, I quickly dieted away any stiffness I would otherwise have attributed to age as well as to sedentary work.

Somehow, my learning process went on and I want to share this with you, because it may help you reduce inflammatory effects from diet ever further. I looked at acid/alkaline food balance and came up with a couple of good information resources that I now follow and plan to pursue further. Will cite those at the end of this note.

The basic teaching on acid/alkaline food balance is that you want to maintain a slightly alkaline body and blood balance, through balanced lifestyle, and through eating foods that promote an alkaline balance.

Ergo, you want to eat about 20% foods that create an acid condition, and that includes all animal proteins. And you want to eat about 80% foods that create an alkaline balance, and that includes all greens & orange produce, fresh fruits, and excludes the usual suspects of sugar and simple carbs.

Grains are fairly acid forming except for buckwheat, and I get my carbs from very alkalizing sprouted seeds and lentils, and carrots & beets which are alkalizing.

Now that my stiffness etcetera is gone, I do eat some good bread, cheese, and meat as a condiment without noticeable ill effect.

Sources promote Avacados as a great food and a veg protein source, @ 14% protein.

Oils are good buffers against acid forming foods, and sources recommend less processed, more Omega 3s type oils.

Lifelong, I have enjoyed etraordinarily good health and unusual independence from any medical interventions. So I have decided to go for aiming to celebrate my 100th birthday in full productivity -- albeit somewhat sedentary working through the Internet. :-)

My Uncle enjoyed wonderful quality of life into his late 90s. He ate wisely -- cutting edge wisely -- all his life and used a small trampoline rebounder daily. I plan to get one, something I used to think about as I rode my horse for miles posting at a trot. :-)

I write these things hoping you might find it useful to think about the 20/80 ratio. After decades of wholesome diet, I still found it felt strange to focus not on what I didn't eat, but on what I did eat. Like, it's not enough to abstain from the grainy grilled cheese sandwich, I have to make that salad and veggies add up to about 80% by volume.

Here are two info sources I have found very helpful. If you sign up they will send you an email a day > but worth it if you have an easy to manage email inbox like gmail. The library comes to you and fits this acid/alkaline theory into current mainstream studies.

At first I was turned off by some scare headlines or an approach of testimonials from people who are in a pit because they have abused themselves. There seems to be less of that now, maybe a result of some testy "replies" I sent back objecting to that approach.

www.phmiracle.com
www.acidalkalinediet.com

Be well. Your take-charge approach is an inspiration, Jeanne.

Edie Frederick

 
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At 9:08 AM, Blogger Jacob said...

Great article.

Make sure to check out Ankylosing Spondylitis for your number one Ankylosing Spondylitis source on the internet.

 
At 9:07 AM, Blogger Ankylosing Spondylitis said...

Hi, dan

Thanks for your suggestion on starchy foods. I myself is too much experiencing pain in my thighs due to AS, But my doctors had never suggested the Food Course. I take indomethacin Tab. to Lower the pain and if i take reqular twice in a day there is no problem, but if i take only 1 tab i incure pain in my thighs. Also i do my reqular exercise which includes Yoga. I do around 25 types of yoga every day and take around 1 hour to complete the same.

 
At 2:04 PM, Blogger Unknown said...

hi ... do you know any company that produce proper mattress for A.S patients? ... thanks for your help

 
At 10:54 AM, Blogger Nitrile Gloves said...

Yes diet always makes a difference..very nice discussion here.Thanks for the lovely post.

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At 8:03 AM, Blogger Unknown said...

Research done into the environmental impact of meat production indicates that it is one of the most damaging industries. It is responsible for a lot of habitat loss, water and air pollution and the extinction of different species. Among meat production, beef and pork are considered to have the worst environmental impact. This is a very important reason to significantly reduce your meat consumption and move towards becoming a vegetarian.
Please visit the following sections for more information:
Ankylosing Spondylitis Symptoms
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At 8:48 AM, Anonymous Anonymous said...

人生中最好的禮物就是屬於自己的一部份

 
At 2:17 AM, Blogger Jacob said...

Thanks for this great article. Lots of useful information. I added a bunch of it to my personal blog. Thank you so much!

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At 2:18 AM, Blogger Jacob said...

Thanks for this great article. Lots of useful information. I added a bunch of it to my personal blog. Thank you so much!

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At 3:33 PM, Blogger Seeker said...

Hi Jeanne,


My name is John and I love your site!

I'm the webmaster of Healthy-Juicing.com and am building into an authority when it comes to juicing information. Is there any chance that you would be willing to put a link to my site in the "Helpful Resources" section of yours? I think this would be a great way to provide more value to your visitors and enhance their browsing experience.

For example, you could simply add the link like this: Healthy Juicing

Let me know what you think.

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At 3:29 PM, Blogger Ray said...

I found your blog very helpful x

http://arthritis-diary.blogspot.com/

 
At 8:35 PM, Blogger alan said...

Spondylitis is very painful problem. Thanks a lot for this awesome information. keep posting variety of articles.


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At 6:11 AM, Blogger xft.co.nz said...

Thanks for the info, im getting pretty bad now since I stopped my job which involved alot of heavy exercise, it would help but would also aggrevate it sometimes also.

My eyes are going a bit blurry lately too I have noticed..

Im going to start trying to exercise a bit more now as I have been working at my computer more so the past year.

I found the chiropractor helped alot too.

I too have a smoke to ease the pain ;)

 
At 6:11 AM, Blogger xft.co.nz said...

This comment has been removed by the author.

 
At 6:32 AM, Blogger Fatigue care said...

You have shared good thing in your blog.Lots of good suggestions, thank you for everything.
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At 3:08 AM, Blogger Unknown said...

Hi, you mentioned that you can't bake. I have managed to bake some amazing cakes using ground almonds. You can generally substitute ground almonds for normal flour for most cake recipes. I use castor sugar and as long as I don't caramelise the sugar, there are no starches released and I can tolerate it. Using ground almonds I can also make pancakes & breads & I now live by the almonds :)

 
At 3:08 AM, Blogger Unknown said...

This comment has been removed by the author.

 
At 3:13 AM, Blogger Unknown said...

Do you guys all generally find smoking Marijuana generally helps? Unless I smoke every day, I find it actually makes it x10 worse, I end up with lung infections & in chronic pain for months. I have to bake it. Will give a vaporiser a go if it's worth checking.

 
At 1:39 AM, Anonymous Anonymous said...

Looking for some information like this blog.

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At 4:03 PM, Blogger Kristen B said...

Kristen Beck Casting is looking for men and women in their 30’s (or around that age) living with AS (ankylosing spondylitis) for a video (website similar to WebMD, but with professional doctor and patient videos).
This will be a documentary style film, having people tell their own stories and journey from their first diagnosis. It seems people have really had a great time on these shoots, and feel good opening up about what they are living with, including positive and learning outlooks. The client is finishing their documentary and only needs people in their 30s (late 20s , early 40’s can be ok, too)

They would be paid $150 per hour. (It usually only takes an hour). If they are not in the Bay Area, the client will pay for flight, hotel, and expenses.

It looks like it would shoot late March 2017 (flexible depending on your availability) in the San Francisco Bay Area, but I need to get info ASAP.
Please email us by March 13th, latest, but earlier would be best, to designcasting101@gmail.com.
I need a picture, location, approx. age, and your short story of living with AS. We would then contact and conduct a 10 minute Skype interview.

Thank you!

 

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