Hi guys, I know how objective some of you are to anyone who isnt looking for a shoulder to cry on (and boy is that discouraging and annoying to come to a board and see a lot of closed minded people).
I, like the majority of you am on Enbrel, Mtx, and prednisone and dont think its wise to get off medication to try any "alternative treatments" because damage will occur (I learned that the hard way, after spending two years trying to get around taking the DMARDS and biologics)..
I no longer have flexion of my left elbow due to total cartiledge rubbing away and complete growth/fusion -- PLUS being "too young" for a joint replacement...( I am 21 y/o) Being ON enbrel while this occurred, Im ready to do anything to prevent the loss of my other arm.
I am looking for others who can discuss and share their experiemental treatments, success/failure stories with me with alternative diets, outsider treatments via a private message or email. I just want to gather as much info as possible.
Id like to find a doctor/RN/herbalist/witchdoctor (haha whatever..) who is willing to walk me through these outside ideas professionally. IF you know someone, could you send me their contact information please?
Creepybird@aol.com
aim: creepybird
My immune system triggered genetic RA after a bad tooth caused a massive infection. (im talking ER infection) that spread up through my ears, and just ravaged my body.
I am VERY VERY interested in infection connection (yes there is a book out there-- get it" Rheumatoid arthritis the infection connection" Poehlmann, Phd), because im convinced it exists, and I have documented everything that had happened to me to a Tee with journaling. There is no coincidence in my situation. The day I started taking Penicillin My feet swoll up, and I havent been the same ever since. Im not sure if wiping out the infection triggered a massive growth of candida yeast, or if I had "leaky gut syndrome" or what.
I came across many a book of GI tract health, mucusless diet advocates, and etc. The things make sense, but just are not practical without professional assistance.
My doctor ordered me off of a vegan (no meat, eggs, diary) diet in early 2005 due to weakness with MTX and my RA got drastically worse. (from just pain during the first 2hours of the day, to all day devestating, cant-walk pain) But I dont have the will power or desire to elliminate protein. In turn I gained 70 pounds (recently just lost 30 with the Lap band).
I have tried the ellimination diet with tons of success.. (a low activity level) and again the will power has prevented me from staying on this diet -- (its not possible to live off of lettace cabbage and beets).
Along with the urge to binge because of the pain.
I have tried the Makers Diet which showcases the story of a young man with Crohns who turned his disease completely around by following, but you have to have a private chef to follow these rules. Has anyone read this fascinating book?
I am currently following a Gluten Free, limited sugar diet and my continuous flare has died down.. (and spikes horrendously after cheating). Im just saying.. Some of you Severe sufferers might want to try taking away wheat/bread/sugar products for a week and see if it dies down a bit)
Cheers, no offense ya'll. Im just aggressive for answers. Thanks. God Bless
Well, I'm not sure about diet. I've been fooling around with this and
that and so far nothing has made a difference. For instance, I have
eliminated meat for a month and then eaten a big steak and nothing
happened. I read about arthritis diets with great interest, but if I
followed all the advice I would be able to eat....nothing! Not even
brown rice. So so far I haven't been able to connect any dots in that
regard.
That said, I know some people have great success with different diets.
A friend of mine believes people with auto immune diseases need lots of
protein. She eats a vegan diet with fish. She says it works well for
her and others she knows with our condition.
I have a thread on fish oil going somewhere here. I have been taking
massive doses of fish oil for about 6 weeks and the swelling in my knee
(flared for 6 months and going) is finally subsiding, but it's also
being intrafrentiated weekly so who knows what's subduing it?
I plan to try Dr. Joshi's 3 week detox diet with my boyfriend in
January, which is pretty much vegan, no fruit, no alcohol, no sugar,
but fish and chicken are okay. It's not unsimiliar to many inflamation
diets so I'll let you know how it goes!
I am currently on the Antibiotic Protocol that agrees with the infection connection with no results yet as I have only been on it for 3 months and it can take 1 to 2 yrs. Gluten free did not help me but I do know that a leaky gut can be a big problem for us which is also addressed on the AP site I will post below. lots of great info there and help in using the AP.
roadback.org
Take care.
I don't believe there's a infection connection - I believe it's the cause. Oh, the bad genes come first for sure, but one bad infection and I was done for. I had a severe strep throat at six months of age, started having arthritis symptoms almost immediatly and I was (finally) diagnosed with JRA a year later.
Whatever the genetic defect is I don't know. But it leaves us vulnerable to . . .what should we call it? "Broken Immune System Syndrome"?
I was diagnosed with celiac in June '05. I haven't noticed any improvement in my RA since going GF, in fact it's gotten worse.
Stay aggressive for answers! No offense taken.
PS - "PLUS being "too young" for a joint replacement...( I am 21 y/o)" I'm 37 and I'm being told I'm "too young". You can find a quality ortho-surgeon who'll do the surgery. Try a place where they aren't so old and stodgy - like a teaching hospital or a big city hospital with an ortho center.
I've also monkeyed with the diet and not found results, but I'm probably not done monkeying.
I did an elimination diet, removing gluten for 3 weeks, and removing all possible allergens for two of those weeks (no meat or animal products of any sort, no nightshades, no citrus or berries, no grains of any sort including corn and rice, no sugars or preservatives, no nuts, pretty much just green veggies, sweet potatoes, and some fruits).
Then I gradually added stuff back. No effect. On general principal of the inflammation theory, I'm eating very little red meat and keeping sugar and white flour low most of the time. But I don't notice a difference when I do eat them. Though maybe like gimpy-a-gogo's experience, if I really went all out with eating one of those things for a day or too I'd see a flare-up.
My brother-in-law, who has celiac, says that 3 weeks off gluten is not enough time to get a read on it, that it takes a lot longer to get it out of your system. So I'm probably going to try a long run of gluten-free after the first of the year. I've learned a few things about cooking and shopping for this brother-in-law and I can manage for myself with gluten-free alternatives; it's not a walk in the park but it's a workable diet.
I would joyfully give up any food or foods if there was any indication it would make me better. Even though I'm a foodie, it would be an easy sacrifice to make for the result if it really helped--and after that elimination diet, I know just hard it is to eat a severly restricted diet and function in the world.
But somehow I just don't think this is about food, except for those who are in the minority of having a real food sensitivity. A poor diet will hurt us, certainly, but I don't really believe a special one will make us better. I wish I believed it, but making another run at the gluten thing just feels like a last ditch effort for me.
Some docs say 8wks, some 6 months, for a celiac gluten challenge. It really just depends on the doc.
From the UK - "The Primary Care Society of Gastroenterology (PCSG) suggests that in adult patients with an uncertain diagnosis an endomysial antibody test should be repeated after 6 weeks on a diet which includes four slices of bread daily. A positive result should be followed by a biopsy. Similarly the British Society of Gastroenterology (BSG) recommends an intake of 10g of gluten (i.e. equivalent to four slices of bread) per day for a minimum of 2 weeks. In children they suggest that the challenge lasts for 6 weeks. They also suggest that the date of he biopsy should be brought forward if the patient experiences severe symptoms and reiterate that ‘development of symptoms on gluten challenge without evidence of an abnormal small intestinal biopsy is insufficient to make the diagnosis’."
Lynk, what great information.
Do they say how many weeks you should be gluten free before going into the 6 weeks of 4 slices of bread daily? Or, would you give that website?
Does it make any sense to you that someone without gastro symptoms, with or without gluten, would be gluten-sensitive regarding their arthritis?
I know gluten sensitivity is a real condition, but I'm having trouble understanding how you can be fine in your gut but gluten sensitive in your joints.
Thanks for posting that information.
Hi RKGal - this is the way I understand celiac disease & RA. People with autoimmune diseases have leaky gut sydrome which allows proteins from gluten escape through the intestinal walls into the blood stream where it is recognised by our immune system as an invader, hence the attack by our immune systems. Someone in a post here recently mentioned a book I read some years ago called Diet & Arthritis, written by Dr. Gail Darlington, a British rheumatologist. She did a thorough investigation into the effect of diet on arthritis & her conclusions were from memory that 1/3rd of people with rheumatoid arthritis have a food connection. I think ICassandra, thanks so much. I'll look for that book.
I've read that the medical world says the idea of leaky gut is completely unfounded. But then I see all the real effects of food sentivity on some people I know, and I have to wonder.
you guys are all so awesome for the book recommendations and the responses! I love it!
I was wondering for the person who did the ellimination diet to the T like that? What did you eat? When I tried it, I couldnt eat a thing.
The only thing on the ellimination diet I liked was "green" soup.. which was basically cabbage, carrots, celery, rice milk, spinach, and potatos. It was mushed up into a thick YUMMY soup and seasoned. OMG, it sounds horrible but it is AMAZING. I make it for the hell of it sometimes too.
But let me tell you, Cabbage rolled in sauerkraut stuffed with BEETS was disgusting. That was the "creme of the crop" recipe they had to offer.
Pretty pathetic if you ask me!
[QUOTE=RKGal] . . Do they say how many weeks you should be gluten free before going into the 6 weeks of 4 slices of bread daily? Or, would you give that website? . . . Does it make any sense to you that someone without gastro symptoms, with or without gluten, would be gluten-sensitive regarding their arthritis?[/QUOTE]
Here's the website: http://www.cdrc.org.uk/en/article.asp?chco_id=544 I don't think how long you've been GF matters, just as long as you load up on gluten before the tests.
Celiac Disease - A Hidden Epidemic by Dr. Peter Green is an excellent resource for gluten sensitivity info. He doesn't recommend diagnosis by gluten challenge, he prefers biopsy, (big surprise there - docs gotta have their "paper" proof
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