Rheumatoid Arthritis

[cgilsing]

My mom went to the doctor this morning and they suspect that she has RA. We are now waiting on the blood test results. Several people in our family have celiac disease (mom included), but we have no experience with RA. I know people with celiac disease are more likely to develop RA. She is 61 years old. Right now it is in her fingers and wrists. Does anyone have experience with this? What kind of prognosis is there for a woman her age, with her symptoms? What kind of treatment options are there? Thanks in advance!

[ENF]

My mom went to the doctor this morning and they suspect that she has RA. We are now waiting on the blood test results. Several people in our family have celiac disease (mom included), but we have no experience with RA. I know people with celiac disease are more likely to develop RA. She is 61 years old. Right now it is in her fingers and wrists. Does anyone have experience with this? What kind of prognosis is there for a woman her age, with her symptoms? What kind of treatment options are there? Thanks in advance!

I'm going to be speaking with someone soon who has had a very bad case of RA for almost 40 years, and will try to ask him about it. I do not know if he has celiac. My mother-in-law also has it, but it's not as severe.

In the meantime, I have a question: Has she been following the Celiac diet and if so, for how long?

[cgilsing]

no, she hasn't been following a strict diet. I have tried to convince her to do it, but she still cheats. She cooks with rice flour, and tries to avoid it at home, but especially when she eats out....she cheats...

[ravenwoodglass]

no, she hasn't been following a strict diet. I have tried to convince her to do it, but she still cheats. She cooks with rice flour, and tries to avoid it at home, but especially when she eats out....she cheats...

I could be wrong but I think the answer is right there.

I had severe arthritis with joint damage and pain that the pills they gave me didn't touch. I had a lot of indications and symptoms of RA but was not forming the rheumatoid factor that is usually found with it. That is looked for in a blood test. Celiac was for me the cause and my arthritis has now been in remission for almost 5 years. The joint damage is permanent and that won't reverse but I now have full function and no pain after progressive damage for over 10 years.

Your Mom, as I am sure you know, is not doing herself any favors by cheating, for one thing there is a withdrawl aspect to gluten and if someone keeps cheating they never get fully through the withdrawl and they never stop forming the antibody reaction that causes so many other problems I hope she becomes stricter in her diet soon. It is very hard to watch someone do this to themselves and I wish I had some good advice to get her to stop but that is a decision she has to make for herself.

[MaryJones2]

I agree with ravenswood. I had all the symptoms of RA except the factor. I even got a round of methotrexate because my Dr didn't want to wait for the rheumatoid factor to be positive. For me, it was gluten all along. If I even get a little bit through cross contamination my joints burn and my hands and feet go numb and stop working for 5 days. Even now I have a few joints that are permanently damaged. Having to avoid gluten should be a minor inconvience in life. Developing RA isn't... See if you can get your mom to not cheat for 1 full month. My guess is she'll stop when she realizes how much better she feels.

[lonewolf]

I had the same thing several years ago. All the symptoms of RA, but no rheumatoid factor. I have psoriasis, so I was diagnosed with Psoriatic Arthritis.

I just have to chime in that being gluten-free might not be enough. I need to be dairy-free and soy-free too. If I eat much soy or dairy at all (cheese or butter, never would drink milk) my joints start to ache. Just something to think about. And, at first, I also eliminated all red meat, poultry, nightshade vegetables, peanuts, and most legumes. After a year I was completely better and I only get joint pain if I eat the "big three".

[nikki-uk]

I had the same thing several years ago. All the symptoms of RA, but no rheumatoid factor. I have psoriasis, so I was diagnosed with Psoriatic Arthritis.

My hubby also.

His arthritis is alot better since his celiac disease dx and going gluten-free. Unfortunately quite alot of joints were damaged before then.

I'm not suggesting that every case of Psoriatic Arthritis or RA will be cured by being gluten-free - but your Mum owes it to herself that she's as careful as possible with the diet - if only to see if her discomfort improves.

If her symptoms still continue there are alot of drugs docs can throw at RA, usually starting with NSAIDS (Non Steroidal Anti Inflammatories) to DMARDS (e.g Methotrexate, Sulphasalazine) which are 'Disease Modifying' drugs and slow down the progression of any damage caused by arthritis.

I am hoping though that your Mum will feel better just by being stricter with the diet - Good Luck

[Ann1231]

I WISH gluten free would cure my RA! I do have a high ra factor. Gluten free helps me feel better and my flares aren't as bad, but I still have them.

I'm 44, was diagnosed January of 2005. I was extremely strict vegan diet, no grains at all for 10 months, couldn't get out of bed, couldn't feed myself, couldn't hold a cup of water. I tried homeopathy, massage, etc, to no avail. I'm now on methotrexate, plaquinil, folic acid, prednisone when I need it and I've needed it for the last two months or so. I'm functioning now. I have very good days and I have not so good days. I do NOT have joint damage though!! I think that's because I went on the meds. The meds aren't always fun. I'm up at 3:15am because of nausea from the methotrexate but I can sit up, I can type, I made myself a cup of tea and can drink it all by myself so the nausea is a minor, albeit uncomfortable, trade off.

Ann

[rock on]

I agree with ravenswood. I had all the symptoms of RA except the factor. I even got a round of methotrexate because my Dr didn't want to wait for the rheumatoid factor to be positive. For me, it was gluten all along. If I even get a little bit through cross contamination my joints burn and my hands and feet go numb and stop working for 5 days. Even now I have a few joints that are permanently damaged. Having to avoid gluten should be a minor inconvience in life. Developing RA isn't... See if you can get your mom to not cheat for 1 full month. My guess is she'll stop when she realizes how much better she feels.

Hi Janet,

I was just wondering how long you were on the diet before you realized that the diet was working for you. Were you officially dx with Celiac?

My husband was diagnosed with psoriatic arthritis. He, like you, has no RA factor...but because he has minor psoriasis, it's been diagnosed as psoriatic arthritis. We've been wondering if perhaps it's just arthritis related to gluten sensitivity and that he also happens to have psoriasis. His nephew is a textbook case of an infant with Celiac...he would've died if they hadn't dx'd him in time. My husband's bloodwork for celiac came back negative, but he's been on the diet for about 7 weeks now & has been feeling some improvements in mood, psoriasis & up & down with the arthritis. We believe that's got to be an indicator that he's got a problem with gluten.

What really interested me in your post is that you said that your joints burn...his do too! He said that the burning has gotten better over this time on the gluten-free diet, so we are hopeful that it will continue.

Glad to hear that you've found the source of your problem!

Best,

R.O.

[lonewolf]

I WISH gluten free would cure my RA! I do have a high ra factor. Gluten free helps me feel better and my flares aren't as bad, but I still have them.

I'm 44, was diagnosed January of 2005. I was extremely strict vegan diet, no grains at all for 10 months, couldn't get out of bed, couldn't feed myself, couldn't hold a cup of water. I tried homeopathy, massage, etc, to no avail. I'm now on methotrexate, plaquinil, folic acid, prednisone when I need it and I've needed it for the last two months or so. I'm functioning now. I have very good days and I have not so good days. I do NOT have joint damage though!! I think that's because I went on the meds. The meds aren't always fun. I'm up at 3:15am because of nausea from the methotrexate but I can sit up, I can type, I made myself a cup of tea and can drink it all by myself so the nausea is a minor, albeit uncomfortable, trade off.

Ann

Have you tried eliminating soy? I know I wouldn't have gotten better if I had only eliminated gluten. For me it was (and still is) gluten, dairy and soy.

[Ann1231]

Have you tried eliminating soy? I know I wouldn't have gotten better if I had only eliminated gluten. For me it was (and still is) gluten, dairy and soy.

I've never really used soy for anything. I've avoided dairy for about 10 years as well. I basically eat a paleo diet, fruits, non-starchy vegetables and a little lean meat...I often don't eat meat

thank you for the thought though!

[Yellow Rose]

I have had RA for 28 years now. I have the genetic marker for RA. However, gluten seems to be the thing that set it off to begin with. After going gluten free for 7 months I have improved. I still have swelling and pain but started eleminating other foods like milk, nightshades, soy, corn, and rice. When I started 7 months ago I could barely walk to the bathroom and back. I couldn't lift anything and mostly sat as still as I could. Now I am working, have stamina, and am starting to exercise. I still have pain but it is getting better each day. Eleminating the other things that were causing swelling and pain has really helped. It is amazing to me that food does so much harm to our bodies. Your mom will have to figure out for herself how much pain she wants to be in. It is not an easy life change.

Yellow Rose

[mushroom]

I had the same thing several years ago. All the symptoms of RA, but no rheumatoid factor. I have psoriasis, so I was diagnosed with Psoriatic Arthritis.

I just have to chime in that being gluten-free might not be enough. I need to be dairy-free and soy-free too. If I eat much soy or dairy at all (cheese or butter, never would drink milk) my joints start to ache. Just something to think about. And, at first, I also eliminated all red meat, poultry, nightshade vegetables, peanuts, and most legumes. After a year I was completely better and I only get joint pain if I eat the "big three".

Hi All:

I have been going through and re-reading the threads on rheumatoid and psoriatic arthritis, and would like to revive this one for a moment. Please bear with me and help me if you can.

I have psoriatic arthritis (diagnosed four years ago, negative RA factor) and have been through all the pharmaceutical treatments and became intolerant of them all, including NSAIDS which cause kidney failure in me (I am very sensitive to meds and often have perverse reactions). My last one was plaquenil which really flared up my psoriasis for three years but it worked for the arthritis--no joint damage. But, oh, all the side effects with I think hair loss being the worst. I thought I was going to end up bald. Anyway, then the plaquenil turned on me and gave me mouth ulcers, progressively swollen ankles overflowing my shoes and, to make matters worse, my arthritis was breaking through it. So I cut it out. I had no idea about the gluten connection at that point.

Went gluten free to try to alleviate the life-long bloating and gassiness, insomnia, palpitations, and sure enough it worked. Went gluten free Nov. 07, quit the plaquenil Aug. 07. Started reading these forums and read about the gluten connection to psoriatic arthritis--what a shock! By December my arthritis was in remission and the psoriasis calming down. Oh boy, was I hopeful. However, since Feb my arthritis has come roaring back--welll not exactly roaring, but burning wrists (one wrist joint really swollen but not hot), left hand totally stiff in the mornings, takes an hour or two to get it moving, weakness in the legs, fatigue, stiff shoulders and neck, all the old familiars except so far no toe or finger involvement. I have no meds to take to alleviate this (except a I have an approval for leflunomide which has side effects worse than the others I have tried and is the last option other than footing the bill myself for Remicade which is available here and has its own really bad side effects.)

I have eliminated all gluten, and no, I would never even think of cheating! Don't even wear any makeup at the moment until I can get back to the U.S. and try some Essential Minerals.

About 12 years ago in the U.S. I tested sensitive to corn and soy, and stopped eating those in the U.S. However, here (in New Zealand) I have been able to tolerate our non-GM corn and have recently eaten a fresh tender ear of corn with absolutely no gas or bloating as formerly with corn. I do dairy light, i.e., cheese, sour cream and yogurt only, having figured out the lactose intolerance bit 18 years ago. And I take some Lactaid Fast Acting with me for emergency situations when I am out.

Now, from what I have been reading, and I really don't want to hear this you probably realize, I am beginning to suspect that I must cut out all traces of dairy and soy if I am going to recover. I never actively seek soy but I am not always 100% vigilant to make sure some doesn't sneak in. Anyway, with no meds to treat me and arthritis getting worse, psoriasis getting better, is there anything else I can do? Hubby has been supportive and gone gluten free too, but might baulk at the rest.

Sorry, this is rather long, but I would like your opinion(s) on this, though it's probably obvious. Thanks for reading.

Neroli

[MaryJones2]

Soy causes inflammation in my body and stiffens me up nicely. Dairy has about the same effect. Gluten gives me the RA-type burning joint pain. I can feel the effects of any form of soy(soybean oil, letichens, etc.). Unfortunately, I think you should consider cutting out both. My husband didn't care about eliminating soy and doesn't eat a lot of dairy. We keep cheese in the fridge so he can add as necessary.

One thing that helps is practicing yoga 2-3 times per week. I particularly like Iyengar yoga because it is slower and you hold poses longer than other forms. It's great for chronic pain. I would recommend taking classes until you understand proper form because you can seriously hurt yourself. For home based yoga, I really like Rodney Yee's Yoga Burn and Alison Nolans Yoga Wisdom series (Tight hips/back and neck pain).

I also did the Open Original Shared Link a few years ago and found it very helpful in opening up my joints. I saw Rolfing featured on Oprah recently.

Taking a magnesium supplement every day and making sure you get potassium will also help. There is an old folk remedy of taking 1 teaspoon of apple cider vinegar every morning to alleviate joint pain. Some of the older people around here say it works but you have to do it for a few months.

[mushroom]

Soy causes inflammation in my body and stiffens me up nicely. Dairy has about the same effect. Gluten gives me the RA-type burning joint pain. I can feel the effects of any form of soy(soybean oil, letichens, etc.). Unfortunately, I think you should consider cutting out both. My husband didn't care about eliminating soy and doesn't eat a lot of dairy. We keep cheese in the fridge so he can add as necessary.

One thing that helps is practicing yoga 2-3 times per week. I particularly like Iyengar yoga because it is slower and you hold poses longer than other forms. It's great for chronic pain. I would recommend taking classes until you understand proper form because you can seriously hurt yourself. For home based yoga, I really like Rodney Yee's Yoga Burn and Alison Nolans Yoga Wisdom series (Tight hips/back and neck pain).

I also did the Open Original Shared Link a few years ago and found it very helpful in opening up my joints. I saw Rolfing featured on Oprah recently.

Taking a magnesium supplement every day and making sure you get potassium will also help. There is an old folk remedy of taking 1 teaspoon of apple cider vinegar every morning to alleviate joint pain. Some of the older people around here say it works but you have to do it for a few months.

Thank you for your response Janet. As you realize, it confirms my latest thinking. I think I will start by eliminating soy and see if that helps. If no relief I will move on to complete dairy although I really haven't been eating a lot lately--occasional cheese. Cut out the breakfast yogurt. I will follow your advice on the magnesium and I do take potassium. Maybe also try the apple cider vinegar since I threw out all my malt vinegar, the favourite of New Zealand cooks.

I have had two really bad experiences with yoga when I had other interfering injuries and have always felt a little leary about it since. The one exercise which used to work for me in CA was exercising in a physio pool--water walking and styrofoam water resistant weight training. It has been impossible to replicate down here, but I have a fresh line on perhaps a pool that might help at a rest home, and I think I can get some pool time at Parafed through the arthritis foundation. Now that I am seeing some light at the end of the tunnel (that is not a train coming) I feel a little more positive about pursuing these options. Now if I can just make these weak legs carry me up the stairs to bed!

Neroli