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#519753 - 07/09/19 01:16 AM No Starch Diet: What am I doing wrong?
kevinGhj Offline
New_Member

Registered: 07/08/19
Posts: 2
Thanks in advance to anyone who reads this and has some suggestions or advice.

I was diagnosed with AS about a month ago (HLA-B27 positive, very high ESR and C-reactive protein) after experiencing severe, disabling fatigue for about a year, then occasional random back pain for a few months. In the month since I was diagnosed it's grown exponentially worse, with all the symptoms most of you probably know: shocking and almost incredible levels of pain, reduced to walking with a cane, barely able to get out of bed, can't turn neck even when I really need to (like when driving!), joints all over the body (knee, ankle, hip, elbow) swollen to 2-3x their normal size, etc.

I went from being an active athletic person, cycling 150 miles weekly, to having no real life to speak of; now I just sit in a chair all day, mostly researching how to solve this.

The AS has also left me with a low-grade inflammation fever/headache throughout the day which has suppressed my appetite, so I'm getting comments from people about how I look like I'm wasting away with the weight loss.

I've tried all of the following without success: Celebrex, Meloxicam, high dose ibuprofen, tylenol, prednisone. For about a week I've also tried high-dose turmeric/curcumin, a green supplement called Moringa, and apple cider vinegar.

The doctor has recommended Enbrel, which I'm supposed to start later this week, but because of the side effects I'm still holding out hope for dietary changes to resolve symptoms, since so many have reported success by changing their diets.

The problem is that I've seemingly been following something like a low/no-starch diet for maybe a week and a half but notice no changes. I used to eat lots of potatoes, and cut all those out. Currently my diet is very simple and mostly fruit based: melons, apples, pears, grapes, grapefruits, bananas, papayas, and sometimes some eggs and fish or turkey. That's really it. No sauces, no unknown ingredients, no toppings.

The only thing in that list that apparently may have starch are the bananas, but I eat them ripe/brown-spotted when the starch should have changed to sugar, and I was also told the 4-6 tspn apple cider vinegar I drink would ward off any effects of the starch.

So here's my question: what am I eating or doing that is feeding the klebsiella? If I understand correctly, that's the primary gut-related source that triggers AS, is fed by starch, and so if you eliminate starch, the klebsiella should go away also.

What am I doing wrong? I've read that fruits may contain starch if they were picked/stored at the wrong time, but I'm not sure what I could really do about that, particularly because the diet is already so limiting. If I eliminated even fruit on the off chance that it has hidden starch, it seems like there's almost nothing left I could eat.

Any suggestions/advice to modify what I'm doing is greatly appreciated.

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#519754 - 07/09/19 04:55 AM Re: No Starch Diet: What am I doing wrong? [Re: kevinGhj]
bilko Offline
Colonel_AS_Kicker

Registered: 09/05/01
Posts: 2358
Loc: London
Kevin -patience. Diet doesn't work instantaneously and a week and a half is barely a beginning. Your diet looks very limited. Why not vegetables, fats or more protein? So much sugary fruits may not be a good idea. Others who have experienced difficulties when starting diet will give better advice than I can, but I recommend you read previous posts.

And don't sit in a chair all day.
_________________________
'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.

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#519757 - 07/09/19 10:11 PM Re: No Starch Diet: What am I doing wrong? [Re: kevinGhj]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 177
Loc: Canada
I second bilko here: patience is key! Given the severity of your joint pain, the diet is not going to make your pain disappear that quickly. Your joints are going to need time to heal.

As for your diet, I see a bunch of red flags. I was super sensitive to starch early on and could not eat grapes, grapefruit, apples or pears, they were much too starchy (Try testing an apple with iodine, you will see what i mean). Bananas are still a big no for me even when spotty (I confirmed this again just yesterday). It's really hard to get enough calories from fruit, and if you are, then you are probably getting too much starch.

The fruits I could manage early on were kiwi, strawberries, pineapple, melons (especially watermelon), mango, and papaya. But they had to be good and ripe.

Eggs are a great choice - I still eat them every day, I see your only other animal food is fish. The thing about meat is that it is very reliably starch-free. And fatty cuts tend to be high in gelatin, which is healing to the gut and joints. This has been my mainstay. Most people on the diet rely on fat for most of their calories. If you're unwilling to eat meat, then maybe consider fats like olive oil and coconut milk.

When I first started I could only tolerate about 2 grams of starch a day, which means I had to make really careful food choices. I tracked all my food but I also found some foods listed as very low starch caused pain (mostly the fruits I listed above and some veg).

Good luck!

P.S. Apple cider vinegar will not block the effects of starch
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

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#519760 - 07/10/19 12:02 AM Re: No Starch Diet: What am I doing wrong? [Re: kevinGhj]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6097
Loc: Reno or SFLU Philippines
WELCOME, KevinGhj:

Every time I have tested papaya they are too starchy to eat, pears also! Starchy fruits have a "...most pernicious form of starch." according to Carol Sinclair. Apples can be a problem, also--basically anything You are uncertain about should be tested with the iodine. All melons, grapes, cherries, raisins, and pineapple are safe.

Ten days is about ten months too early to notice great improvements through diet; we got this sick gradually and to get well naturally requires a truckload of patience.

Fasting can get You closer to normal in between 4 and 6 days. Then borage seed oil about 5-6g before retiring. EVOliveOil by teaspoonful 10X or more throughout the day but especially before meals. More salads and vegetables would help. Nuts, especially macadamias, almonds, filberts, pistachios, walnuts, and Brazil should be safe, but in early stages if asthma present avoid macadamias and Brazil nuts. Tofu is starch-free, meringue cookies and sure that Andrea's Forest and Fauna site has great recipes for safe macaroons and breads.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#519762 - 07/10/19 01:37 AM Re: No Starch Diet: What am I doing wrong? [Re: kevinGhj]
kevinGhj Offline
New_Member

Registered: 07/08/19
Posts: 2
Thank you bilko, Kellybells, and DragonSlayer for your very helpful replies, with lots of great information.

I did test a bunch of fruits with iodine because of the advice given here. The only ones that turned black were the banana (surprising, because it was fairly ripe), and watermelon (also surprising, as I had no idea it contained starch).

Apples, peaches, plums, grapes, pears, and nectarines all seemed to pass (very slight darkening, or none at all; the apple, for example, remained entirely orange).

I wonder why people would get different results testing the same fruits? E.g., one papaya turns black, but another is OK. Is it just a question of the time picked/ripeness?

I followed the high-fruit diet because it resolved some GI issues I had been experiencing, and because (before getting AS), I did high-volume endurance sports, and found that high-fat/high-protein diets without enough carbohydrate caused significant fatigue and lack of energy. I worry that going to high-meat/high protein would nullify that, but at this point the pain is so intense that it seems I'll have to try.

Some more questions come to mind:

1. Although it probably varies from individual to individual, in your experience, how much time passes before someone sees noticeable improvement on the no starch diet? DragonSlayer, you mentioned 10 months: is that time to see any positive results at all, or time to near-complete remission?

2. I intend to try the apple fast mentioned on the site. The apple I tested with iodine was fine, but DragonSlayer and Kellybells, you both mentioned apples being problematic. Should someone be doing the apple fast if the fruit being used ends up containing starch? I worry that would be a bad way to start a detox…

3. It seems like the no starch diet somewhat forces people into a keto/high-fat direction, since so many carbohydrates are starches. Did/do you find it difficult to get enough nutrition variety if relying predominantly on meats and protein/fat? What about the expense? (that was another motive for the fruits; seems much more affordable than lots of meat)

4. I've read that red meat causes inflammation, and the World Health Organization classifies some types of it as carcinogenic. Will it cause issues for someone with an inflammatory condition like AS to start eating an inflammation-producing food? Or does the klebsiella really feed only on starch, so other pro-inflammatory diets won't have the same negative effect?

5. Can you suggest any sample daily or weekly plan? I think it's beneficial to see what the no starch plan looks like when laid out day to day. That was another benefit to the fruit plan; it didn't require much thought, preparation (only takes 2 seconds to peel a banana!), or expense, and so trying this new way will be a significant change in habits.

6. If and when you did start to see good results from the diet, how were you able to distinguish whether it was the diet or else whatever biologics/medications you might have been taking at the time? At what point did you feel safe in discontinuing the medications because you knew the diet had resolved things?


7. Since it sounds like the diet takes a bit of time to have effect, is there anything I can do in the interim to regain some sort of normal functioning? Right now I can barely walk with the pain and swelling of joints, and I don't see how to carry on in that state for months if that's how long a dietary change would need to take effect.

8. Besides diet, were there any other significant steps you took specifically to heal the gut? Supplements, probiotics, any recommended tests to track whether certain types of bacteria were increasing/decreasing? I've used Moringa and turmeric without much effect, but maybe it's too early to tell.


I very much appreciate any suggestions and advice on any or all of these topics; thanks again!


Edited by kevinGhj (07/10/19 01:37 AM)

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#519764 - 07/10/19 08:36 AM Re: No Starch Diet: What am I doing wrong? [Re: kevinGhj]
bilko Offline
Colonel_AS_Kicker

Registered: 09/05/01
Posts: 2358
Loc: London
When I started the diet I was taking indomethacin, 3 tabs a day. After a while I reduced to twice a day to see what happened. Fine, so a short while on I reduced to one a day and then stopped altogether. To my surprise I had found I no longer need them. Since you are in the grip of the mother and father of a flare it may well be worth trying the enbrel and if and when you feel better you can then try tapering off.

Patients with active AS Ebringer would see every 3 months, that was the period in which he could judge if anything was changing. After the diet started and I was in remission it went to 6 months.

There was once a dutch guy on this forum who was a keen cyclist. His solution to the energy problem before a long ride was to eat a packet of butter. As for red meat I have always gobbled it. 1/2 to one pound a day. Beef, lamb pork - the lot.

When I was in the grip of my worst flare the rheumy and physio told me to go swimming. It was a life changer. If you can get to a pool, lake river or the sea go.
_________________________
'Then you should say what you mean,' the March Hare went on. 'I do,' Alice hastily replied; 'at least - at least I mean what I say - that's the same thing , you know.' 'Not the same thing a bit!' said the Hatter.

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#519765 - 07/10/19 07:05 PM Re: No Starch Diet: What am I doing wrong? [Re: kevinGhj]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 177
Loc: Canada
Great questions Kevin!

1. I noticed enough improvement within 2 weeks to know it was working -joints still hurt but far less stiffness and sharp pain. But I had already, on my own, figured out the link between dairy, grains and arthritis, so my starch intake had been fairly low for years. It then took a few months to figure out what I couldn't eat (I would think I'd eaten clean only to wake up with pain). Given the severity of your pain it will likely take longer but look for small improvements in things like stiffness and swelling.

2. Can't speak to fasting - I tried and failed at a water fast! I definitely feltbetter but couldn't keep it up.

3. I do not eat keto (though I slipped into it early on by accident as I figured out the diet). I get enough carbs from fruit and veg that I far exceed any low carber diet.

4. Cured meat has been identified as a carcinogen but the jury is still out on red meat. Look up Stephen Guyenet's blog series about the research around red meat if you want read up. I share your concerns given the current attitudes about meat, but have had nothing but good results with it - my pain much better and my cholesterol levels the same.

5. My starter diet was quite limited: eggs, kiwi and green tea for bfast. For lunch and dinner I ate meat or fish plus veg like zucchini, asparagus, spinach, artichoke, celery root and rutabaga. Lots of olive oil. Snacks were fruit like strawberries, pineapple, cherries, blueberries, melon and mango. The best fruits are the ones you can ripen on the counter. When really hungry I made coconut milk smoothies with fruit.

6-8. I never took meds, so cant comment on weaning, but it does mean i can attest my success was was all diet. After 2 months of diet I started on a protocol to shift my gut bacteria: 6-8 weeks of probiotics followed by 10-14 days of berberine (an herbal antinpviotic). Idea is that berberine kills good and bad bacteria, probiotic helps replenish with good, limiting real estate for the bad guys. After several rounds I found I could eat more low starch/low lactose foods like grapes, carrots, squash, apples, nuts, dates, cabbage, figs, hard cheeses, etc. Has really opened up my food options, and that's where I still am today.

I also focused on joint healing by eating meats full of connective tissue (ribs, stewing beef, thanks, oxtail, etc.), bone broth, and powdered gelatin.

Turmeric is starchy but others (I never tried it) report success with curcumin extracts. And one poster here blends ginger with water and then let's it sit until the starch sinks to the bottom and the liquid can be drained off the top and consumed as an anti-inflammatory. Brilliant idea.

Good luck!
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

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#519812 - 07/15/19 10:26 PM Re: No Starch Diet: What am I doing wrong? [Re: kevinGhj]
mulehound Offline
Commanding_AS_Kicker

Registered: 04/27/09
Posts: 698
Loc: USA state of Utah
My Mark was three months. Felt weak tired no energy. Then it just started getting better. I went from pain so bad I could not sleep or walk a hundred yards back to riding my mules hiking climbing. In fact I have done so well I need to lose some weight eating to many of the wrong things with no ill effect.
I was very strict at first. No fruit, no dairy, no starch at all. I lived on eggs lettuce,raw carrots,celery and a pickle once in a while plus some almonds after a while. Apple fast and lots of extra virgin olive oil. I also ate a lot of meat. Deer elk beef chicken. Bacon was a treat I indulged in.
It was the hardest thing I have ever done but also the most rewarding.
When the doctor spread the cocktail of medicines out for me I said no,I will find a way. I did. It was all the great people here that pulled me through it. And I mean all, those that are NSD and those on biologics etc. I could list names for half a page. They are in the USA Canada South America and across the oceans.
I consider them my family all of them. You came to the right place.
ETTE
Darrel


Edited by mulehound (07/15/19 10:29 PM)

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