Hi all!

I am happy that i found you and i will fight with you to find a cure ( in the end all we have to do is to be positive and strong! )

I am Alex from Greece, i recently was diagnosed with AS after a lot of years of pain (since 17) and misdiagnosed by orthopedists. I am 28 with HLAB27+ and fused sacroiliac joint.
I found out that i developed a very big tolerance in pain, so this is bad in my future condition i guess, as i am not sure if i can describe the exact situation to the doctor. In the hospital my bloodwork showed 10 times higher inflammation marks and yet those days i was feeling better than other...

Anyway, i am now in my 2nd month of NSD and i feel really great (but still taking NSAID). My bad luck was that the test vaccine for tuberculosis came positive and i am in antibiotics so that i can start biological medication afterwards. Those antibiotics are starchy as well :S
So my big problem is that i can not quit dairy products, although i quieted milk (cow milk) and i have the impression that i felt better, i can not quit cheese. Can i have clear results since the antibiotics are starchy (and i am taking them in the morning)?
Could it be that i am sensitive only to cow milk products? (anyone with same results?)
Also i limited sugar and coffee.
Last, as an interesting fact, my brother has the coeliac disease (gluten intolerance), this gives me more hope for NSD as it is related somehow (maybe common root cause --> Gut).

Thanks! I am really pissed off with this disease and i will not let it bring me down.

Hi there,

Yes you can still make progress on the diet despite the antibiotics pills being starchy. It's such a tiny amount it should be fine.

If you feel you have issues with the lactose in milk then go for hard cheeses like cheddar and parmesan as these have pretty much no lactose. Also make your own yoghurt as if you let it ferment for 24 hours there will be no lactose. Butter is also lactose free from my understanding. But avoid all other dairy products like milk, ice cream etc etc.

All the best

See if you can tolerate the goats milk cheese, and yogurt. Goats milk butter is also available. Could also try sheep yogurt and sheep cheese.

Take care -

blood tests showed that i tested very sensitive to the casein in dairy.

i did a lot of reading and it is very possible that i am only allergic / responsive to cow casein. if that is true, then i should be able to eat goat cheese, ricotta, romano.

i can't tell cause and effect unless i have dairy when my gastritis is very bad or if i consume say a cup of milk or yogurt, so if the goat or sheep's milk cheeses are bothering me, i wouldn't know with the little that i consume.

but yes, if you have a casein sensitivity, which is really common, like i do, then it is possible to be sensitive to only cow dairy.

Hi all,

Thanks for the tips! After a "i must say" pretty good response to NSD i started my first Humira shot last week, i have unexpected good and fast results.
As i am a type of guy that i am getting crazy if i don't know the exact root cause of a problem, as you understand i can not stop thinking about how AS behaves and evolves. After my very good response to Humira i confirmed (the obvious), that our immune system has a bug, something triggers it and the bug comes to the fact that nobody tells it to stop as it should. This trigger is for sure a environmental factor (bacteria, virus etc), what Humira does is injecting the signal proteins that signal the immune system to shut down.
For sure not an accurate scientific conclusion as i am not a doctor but this make sense for me. This explains why Humira and other anti-TNF shows such good results, they do not cure the cause but they signal the immune system to stop hunting :-)
But why the NSD has only long term results? Is it that maybe because of the long term limited carbohydrate diet all it does is make the immune system weaker, having the same results as anti-TNF treatment but in a different way (one gives instant signal and other in long term suppress the immune system)? (Interesting link http://www.sportsinjurybulletin.com/archive/immune-system.html )
I wish i had the knowledge and tools to troubleshoot as long as it takes.

PS: Interestingly i saw some number released by our public national insurance (in Greece), in the top 10 of drugs cost every month are 4 anti-TNF drugs and first by far is Humira... in a world that all human souls are a statistic, money is the only thing that matters... unfortunately

have you ruled out if you are celiac as well, with the blood test called tissue transglutaminase ? If not, make sure you eat gluten food for atleast six weeks before having test, otherwise test will not be accurate at all.

I agree with the desire to understand root causes. At the moment we only seem to have hints at the root causes, and it takes more biology knowledge than I've got to understand these hints well. So you can take my explanations with a bigger grain of salt than explanations from the few KickAS members who have formal medical training (who knows, maybe you'll get lucky and one of them will comment on this topic).

The main themes involved in (typical cases of) AS are:
(1) a mis-tuned immune system which causes too much collateral damage aka "friendly fire" to your own tissues
(2) intestinal germs which trigger immune defense
(3) damaged intestinal lining, aka "leaky gut", which increases the level of immune defense because foreign particles are escaping into the blood stream

Anti-TNF addresses #1 by suppressing the type of immune response that causes too much collateral damage

Diets can address #2 and/or #3, and both are gradual processes, not sudden like taking a drug that chemically disables an immune response.

For #2, when you change your diet it feeds the microbes living in your gut a different mix of nutrients as well, so gradually microbes that prefer your new style of diet will start to out-compete other types that preferred your old diet. This is the goal of the Specific-Carbohydrate diet, as well as low-starch/no-starch. You can also make more sudden changes to the gut population by taking antibiotics, but that is a drastic approach that can sometimes backfire by killing too many of the helpful microbes. Like setting off explosives in a town with known terrorists... you will kill both terrorists and innocent citizens, and the bad guys may even take over the place afterwards if the local police force got killed off. Certainly antibiotics have been known to work against AS, but improvement from taking any old antibiotic is NOT guaranteed. That means unfortunately that the TB antibiotic may even result in a temporary setback (but you need to take it anyways!)

Some diets focus on gut healing to address #3, but that is not guaranteed merely by following low-starch/no-starch guidelines. Both of those diets allow foods that can be very irritating to the gut, so it is possible to increase gut inflammation with the net result that you feel worse. This happened to me, by eating too much egg whites when first starting no-starch, and it sounds like you have a similar problem with cow dairy. I would recommend taking a food intolerance test that will show whether goat milk or sheep milk is better for you, and if so switch over to goat and sheep cheeses like Sue mentioned. This is an example of the type of test to which I refer (this one tests both cow and goat milk): http://www.vrp.com/test-kits/food-allergy-general

Almost forgot, here are links to interesting articles about research on gut population influencing inflammation:
http://www.sciencedaily.com/releases/2008/10/081015183450.htm
http://www.sciencedaily.com/releases/2011/01/110131153246.htm
http://www.sciencedaily.com/releases/2010/06/100617120716.htm

That last one is really interesting because it demonstrated that a single additional gut germ could trigger arthritis in genetically susceptible mice

thanks for that link. at this point, just assuming (maybe hoping is a better word) that even though i can't eat cow dairy that i can eat goat and sheep dairy (soft spot for cheese ) but i like data better than assumptions, so would love to test more specifically for this casein sensitivity.

thanks again!

thanks for that succinct summary!

Kiwi,

I never heard of hard cheese having less lactose? Do you have any dairy recommendations for those of us that can't do dairy? Has your hubby been able to eat certain dairy foods without a flare? Dairy always gets me, but if there is some cheese out there with less lactose, I would like to add it to my diet.
Thanks!