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#519895 - 09/26/19 11:37 PM No Starch/Carnivore Diet Problem?
kevinGhj Offline
New_Member

Registered: 07/08/19
Posts: 3
For the last 2 months I've been following the "carnivore diet" (eating only meat, and also salmon and eggs). While I realize this is often seen as an extreme version of "no starch," I did it to guarantee that the diet had zero starch. I've found various food lists to be too unreliable for peace of mind (e.g., saying something is free of starch which nonetheless turned dark black when I tested it with iodine). Doing meat/fish/eggs only removed any doubt, which was the goal. I'm also assuming 2 months of zero starch (and I followed it with absolute strictness and no lapses) would be long enough to significantly reduce any klebsiella populations in the gut.

RESULT: Inconclusive.

It's hard to tell whether this worked or not; the really terrible crippling joint pains that required a cane to walk have dissipated, but during this time I've also been on Enbrel from about week 4-12, and was told that around week 12 or before patients start to see improvement.

So it seems impossible to tell if it was the diet, or the biologic, or both, which reduced joint pain (from 8/10 to around 3/10).

My two most serious and painful symptoms have been a badly swollen and immobile knee which can't bend, and disabling, severe fatigue that prevents exercise or even normal daily functioning.

These have both remained largely unchanged even with the Enbrel/NSD combination. Still can't exercise, still the flu-like total lack of energy, etc.

Put another way, if the current state of things is the best result that this diet can offer, I don't really consider it a solution. It's nothing approaching what "normal" used to be, nor is it like the near-total remission I've seen others experience using diet and/or medication.


Here's the main problem: I just got blood work done, and although the inflammation markers have gone down (CRP, etc.), my cholesterol (which was 173 earlier this year), is now 527, through the roof, with normal triglycerides (97) but crazy high LDL (398).

I've read various carnivore-diet defenders say that high LDL is no big deal, cholesterol doesn't cause heart disease, etc. That may be true, but I'm not qualified to evaluate it, and seeing a number that high (almost triple my old value!) is unsettling.

So my question, for anyone with advice: what's the next best step?

Go back to what I ate before, starch and all, relying on the Enbrel alone to keep the joint pain at bay?

Keep going with carnivore and risk the heart attack?

Try to find some medium, risking some starch inclusion but also getting vitamins and fiber that would lower the alarming blood markers?



I know it sounds a bit morbid, but if forced to choose, a short, relatively joint-pain free life on the meat diet, followed by premature death from a fatal heart attack, actually sounds far preferable to a longer but excruciating life with the way my joints used to feel, while back on the starch-heavy diet.

I also got a test done recently for the gut microbiome (results pending) while in the midst of this diet, so I'll wait to see if it measurably reduced certain bacteria or if it was all placebo.

I'd really appreciate any advice.


Edited by kevinGhj (09/26/19 11:38 PM)

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#519896 - 09/27/19 01:41 AM Re: No Starch/Carnivore Diet Problem? [Re: kevinGhj]
jroc Offline
Magical_AS_Kicker

Registered: 10/30/08
Posts: 754
Loc: New Zealand
Wow, that's a crazy high LDL level which isn't something to be taken lightly.

You might be a dietary cholesterol hyperresponder (around a quarter of people are) so cutting out eggs should help bring the LDL down.

The other part of the LDL equation is saturated fat, so choosing lean cuts of meat rather than fatty cuts or processed meats would help with that.

If I was you I'd experiment more broadly with different eating patterns/anti-inflammatory diets to see if you notice any difference in AS symptoms when eating different foods as you don't want to be eating a restrictive or potentially dangerous diet if you aren't getting a benefit from it.

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#519898 - 09/27/19 06:53 AM Re: No Starch/Carnivore Diet Problem? [Re: kevinGhj]
bilko Offline
Colonel_AS_Kicker

Registered: 09/05/01
Posts: 2359
Loc: London
When I started the diet (lsd- 22 years ago!) I was taking indomethacin. Feeling ok I gradually reduced the dose (from 3 to 2 to 1 tabs per day) then stopped them completely. Perhaps you can try that with enbrel? Can you discuss this with your doctor? If you regress then the diet is probably not working. If you do not the diet probably is.
_________________________
'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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#519901 - 10/04/19 02:11 AM Re: No Starch/Carnivore Diet Problem? [Re: kevinGhj]
Bazel Offline
Member

Registered: 12/28/18
Posts: 26
Dear KevinGhj,

My journey has been quite the same as yours. I have also started Enbrel and NSD and it is difficult to say which works for me. Also started with carnivore: didnt work for me.

I have a few things that I find very important for you to realise:
-Enbrel can take up to a year to achieve it's full effect. Please give it more time. After 10 months my pain still improves.
-Carnivore diet is not a sustainable diet for most people. Some have succes. I wouldn't count on you being one of them. It causes destruction to your gut microbiome. Instead of trying to build a healthy one that can digest veggies, people just give up on it entirely. I for instance found to be intolerant to eggs and cow's meat. Maybe you are intolerant. Test for it.


My current plan is to fix my gut while the Enbrel is a temporary pain reliever which does not harm my gut.

Arthritis is a disease of the gut and it takes a very long time to restrore the intestinal balance. It is a very very difficult road. I think those of us with Enbrel might have to easier, because we can count on the Enbrel to do it's job while we slowly but surely work on getting healthy.

I am finding out more and more that it is not about not eating starch per se, but that the NSD is one of the pathways for our gut to heal itself.

My advice:
Slowly introduce safe veggies. But that's only 10% of what you should do. Find out which probiotics you need, which antimicrobials you need, which foods are intolerances for you, what is the root causes that causes your gut to leak, which vitamins you lack, if you have SIBO, if you have candida, if you have pathogens in the large intestine, if you have stress-issues that exacerbate the problem, all the works.

I suggest you find a naturpath and do good stool analysis and try to find the underlying pathology that causes your AS. For me I have been looking for a year now. Slowly I have gotten my diagnosis complete. I've been succesfully treating myself, slowly but surely. I am going to give it years and years to fully recover.

I hope this helps. There is millions of article and scientific research now to dive into. Here are two things to start with perhaps:

Here is a 10 part docu explaining the gut's role in AS.
-https://www.youtube.com/watch?v=nj-aFFz8xPY&t=1s

The Keystone Approach!
-https://www.amazon.com/Keystone-Approach-Arthritis-Psoriasis-Microbiome-ebook/dp/B0713S37RC

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#519909 - 10/05/19 11:17 PM Re: No Starch/Carnivore Diet Problem? [Re: kevinGhj]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 181
Loc: Canada
If it were me I would get a retest of cholesterol before doing anything. And get a particle test to find out the density. I eat a largely meat-based diet and 2 eggs every day. I mostly choose fatty cuts, so my intake of saturated fat is very high and while my LDL is a bit above normal, it's no higher than when I ate a mostly vegetarian diet.

You may be a hyper responder to dietary cholesterol, as someone noted above, Dropping the eggs would take care of that.

The NSD really improved my symptoms but I didn't see lasting improvement until started a 'weed and seed protocol recommended by my naturopath. The protocol involves taking probiotics for 6-8 weeks followed by 1-2 weeks of a natural antibiotic (I use berberine and sometimes peppermint oil and oregano oil). Has greatly improved my symptoms over time, including my brain fog and energy levels, and increased my starch tolerance. But I still eat a very low starch diet, and it's one thing I wouldn't give up.

It was also my experience that joints take a long time to heal. I have found 1 TB gelatin mixed with water or juice to be very helpful,


Edited by Kellybells (10/05/19 11:23 PM)
_________________________
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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#519910 - 10/06/19 04:42 PM Re: No Starch/Carnivore Diet Problem? [Re: Kellybells]
tvmanjon Offline
New_Member

Registered: 01/24/19
Posts: 20
Loc: Michigan
If I hadn't seen the authors name I would have thought I wrote the post.. so much my story too. Kelly what brand of Berberdine do you take and is it starch tested? Also what is TB gelatin? Jon

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#519916 - 10/08/19 03:31 PM Re: No Starch/Carnivore Diet Problem? [Re: tvmanjon]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 181
Loc: Canada
Originally Posted By tvmanjon
If I hadn't seen the authors name I would have thought I wrote the post.. so much my story too. Kelly what brand of Berberdine do you take and is it starch tested? Also what is TB gelatin? Jon

Funny how that happens!

I have taken all kinds of brands of berberine and never noticed a difference between any of them - they all work, and seem to have the same effect. My current brand is 'Best Naturals' right now but only because that's what the store had in stock. I take 500mg in the morning and 500mg at night. I have never starch tested any of them = I get better after I take it so that's been enough to me.

I meant 1 tablespoon of gelatin smile. I buy powdered gelatin in bulk when my joints have gotten particularly bad (like after eating lots of starch over the Christmas season) and take it every morning mixed in water or juice for a few months or until my joints feel better. It's amazing stuff.
_________________________
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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