Hi -
My rheumatologist, supposedly one of the top guys in our state, thinks that diet changes are nothing more than a placebo effect on any type of arthtitic condition, including my AS and psoriatic arthritis. Can you believe that? It disturbs me that he won't even consider that it can help.

I am HLAB27 positive and have the typical changes in the SI joint. Also I used to have mild psoriasis until I started taking Methotrexate, which completely "cured" it. I have zero psoriasis now (unless I go off of the MTX), but my level of pain varies all the time, my gut always hurst, and my CRP levels are always elevated way above normal. I really want to get off of the drugs so I started the no starch diet.

I'm on day #3 of the no starch diet and can already feel a positive effect - no gut pain for the first time in years.

I don't have any other serious health conditions except for AS and all of the AS-associated problems, so is there any reason I have to tell my doc what I am doing?

All the articles here, and other places on the web, say "consult your doctor first", but I can't do that because he is so closed-minded when it comes to nutrition or diets.

Is there any reason I should hisitate, or see another doctor, before I go further with this? My plan is to gradually cut back my weekly doses of methotrexate, while at the same time cutting out all starches. Hopefully the psoriasis won't come back and the pain won't get worse again. It took me a long time to get off crutches and I sure don't want to go back to that again!

Anybody else have a doctor like mine? Since my doc won't help me with this, I'm just using my best judgement regarding my reduction of meds, and using Sinclair's book as a diet guide.

Thanks and have a beautiful day!

Marta

Hi Marta,

It really would be best to gradually cut your meds with your docs supervision. Do you think he understood that this was your plan?

Communication with docs is sometimes SO difficult especially when you are wanting to try something that is not mainstream.

Good luck to you!
-Donette

it might be a good idea to print off a copy of Ebringers paper 'The Use of a Low Starch Diet in the Treatment of Patients Suffering from Ankylosing Spondylitis' which appeared in Clinical rheumatology, 1996. You can get a copy of the study from http://free-zg.t-com.hr/gorantt/ZDRAVLJE...t%20of%20AS.doc . if you take a copy along to your appointment and the doc says that there have been no studies done and there is no evidence then you are in a position to politely inform them of their ignorance.

It can be easier to find a general physician who is open-minded with respect to treatment options such as diet and supplements. I have a well-respected rheumatologist, who good-naturedly puts up with my quirky decision to forgo immune suppressing drugs, instead using diet and off-label LDN. But my GP is fully on board with exploring these alternatives, very happy to discuss such strategies; he's the one who prescribes my LDN.

Its not surprising that your doctor doesn't support the NSD. There just hasn't been enough written in medical journals about it to make it seem like an evidence-based option (by medical research standards). That doesn't mean it doesn't work. It just means that there isn't sufficient medical evidence for a doctor to endorse it. That Ebringer article is probably the only one that really puts the case, and it is now quite old.

Diet isn't really anything you need to get approval from a doctor for, unless you have other underlying complaints that a diet that is very low in carbohydrate and higher than normal in protein would affect. From memory that would include some kidney or heart problems, and could be difficult with hypoglycaemia or diabetes problems, but its definitely worth asking your GP if a NSD diet would be likely to cause you problems.

As far as reducing meds goes, its always best to tell your doctor you want to gradually go off them, and ask how best to do this. Some drugs do have "rebound" type effects if you reduce too quickly.

Your doctor is there to assist you, not control you. If you believe that NSD helps (which I also believe), then do it and don't worry about what your rheumy has to say about it. He is stuck in the quagmire of big pharma obstinacy, so you need to take primary charge of your health.

personally, i think much of this is up to you, except for changing your meds on your own, without your doctor's involvement.

as for the diet. i'd stick to it, tell your doctor at each visit how much it is helping, leave it up to him to "believe you" or "not".

and i'd tell your doctor that you want to decrease the MTX. if he's not on board with that, then i'd try to find another rheumatologist.

i spent way too many years "fighting" doctors to believe there was even anything significantly wrong with me; "fighting" them to PLEASE! prescribe something, anything to relieve my symptoms and allow me to function. it is so much easier now that i have a rheumy with whom i am on the same page with. he's so open minded, considers all options of possible things that cause flares and possible ways to help the body heal itself. he's open to the dmards and biologics, or using prednisone judiciously, but also open to the supplements, diet, exercise, acupuncture, chiropractor, LDN. whatever works seems to be his motto. i feel so lucky to have him in my life; especially after all those years of frustration. and for me, i'm so flip floppy on what i want to do (drug wise) depending on how i feel; when i feel good i want to do it as naturally as possible, when i flare, i want the biologics. and it was so nice last week to be able to actually tell him that and tell him that i saw him as someone who could hear what i was saying and help with the decisions; not exactly telling me what to do, but advising me what he thinks i should do. if you can find someone like that, i think you are golden. though i must admit it took me a dozen years of way too many doctors to get to this point.

PS glad the diet is working so well for you! good luck with it!

Am withh Greg and CEMC on this - your body, your health, and, you will not be finding a rheumy that is going to go the diet route. As far as they are concerned it aint proven, any and all the histoire from KA won']t blow any bubbles for them, and so, they will feel threatened going that route... Like the possibity of being sued if summat goes wrong.

Go your own route but do run past one of em that you will be coming off the meds. Need to back out slowly with meds.

Good luck - go well

Hi, Marta:

Your doctor will never really help anyone with AS, except by using drugs to cover up his ignorance--temporary relief in exchange for long-term problems.

Ask him if he has EVER PREVENTED FUSION or even has any idea how to do it?

A physician is FINISHED LEARNING. Regret this is the best society could do for us, but if You attempt to instruct him he will only resent it: Pearls before swine. That which he has learned, certainly he learned well and for 99.9% of medical questions--he has the right answers. Welcome to the .1%!

Find another doctor who is not one of the top guys, but humble enough to know he does not know everything.

HEALTH,
John

Doctor's! There are Dr.s and then there are Dr.s. Some good, some bad, some in-between. I don't even want to count how many I have been through to get rightly dx'd, medicated, pain relieved and most importantly Accepted.

My Rheumatologist was slow to get on board of anything but Sulphasalazine at the start but he got over that quick when he saw how bad I was getting.

I have the most interesting Primary Care Physician in the world. I would love to take her with me when I move out of state. She was a Psychiatrist for 41 years and decided mainstream medicine just didn't cut it all the time. She went on to go to Bastyr College. One of the top notch Natural pathic schools in the world and now is an Integrative Dr. She will let you try anything and believe you if it works for you. She gives you her cell phone number and you can even call her on the weekends. She is 3 hours away from me and we do a lot of calling. Every now and then, she will charge me as if it is an office visit but not very often.

If you can't find a Dr. to get on board, then do the diet on your own. You do have to tell them though about changing your med's. That is a must. Quality of life vs. food???