Anyone With Rheumatoid Arthritis?

[kimis]

Hi Everyone! I'm starting to suspect I have RA due to various joint, bone and muscle pains. I did start taking Unithroid about 2 months ago....I don't know if that may have some effect. I think I remember reading it can make you lose bone mass or something.

Any stories, suggetions or experiences you could share would be really helpfull to me.

I notice the pain mostly in my one heel (been seeing a foot Dr.) my neck, upper back, sholders, elbows and knees. I am an active person.....I have been bike riding, jogging, doing yoga and kickboxing for about 10 years. I never had any problems like this before.

I have also noticed I am not as strong as I use to be. I really don't think it is aging....I am 28. At first I thought it could be my thyroid issues (dx with Hashimot's 6 months ago) but it gets so bad sometimes that it hurts to do simple things. I know people with autoimmune diseases tent to have more that one. After I started this diet a year ago is when things really started to go down hill. First bad allergies, then a pituitary tumor....then Hashimoto's......and now whatever this is. Over the past 8 months it has got worse....I don't think I have had a day without pain in a month.

[ravenwoodglass]

If this started when you started the med you should discuss it with your doctor and see if switching to a different med might do away with it. I am assuming you have checked with the maker of the drug and know for sure that it is gluten free. Doctors are for the most part clueless about what drugs are gluten free and the way they label drugs even a pharmacist can't know for sure without calling. For me the arthritis flare is one of the worst parts about being glutened.

[one more mile]

an under active thyroid will cause much joint pain. You may be going though all this because as I started to fix one problem I noticed others. For example one most of my body pains were gone I found out the reason my jaw hurts is TMJ. Never though I had that before because everything hurt so I could not tell one problem from the other.

good luck

one more mile.

[kimis]

If this started when you started the med you should discuss it with your doctor and see if switching to a different med might do away with it. I am assuming you have checked with the maker of the drug and know for sure that it is gluten free. Doctors are for the most part clueless about what drugs are gluten free and the way they label drugs even a pharmacist can't know for sure without calling. For me the arthritis flare is one of the worst parts about being glutened.

I didn't know you could have an arthritis flare from being glutened. I have checked my meds and they are safe. I think doctors are clueless about Celiac Disease as a whole. Well, the ones I have spoken with. My sister is a pharmacist and she had no idea about gluten till I got dx.

[lonewolf]

I had Psoriatic Arthritis, which is almost exactly the same as RA. Soy and dairy are almost as bad on my joints as gluten. I don't even consider myself to have PA anymore because I do so well gluten-free, soy free and dairy free. Gluten free is great, but it doesn't cure everything.

[kimis]

I had Psoriatic Arthritis, which is almost exactly the same as RA. Soy and dairy are almost as bad on my joints as gluten. I don't even consider myself to have PA anymore because I do so well gluten-free, soy free and dairy free. Gluten free is great, but it doesn't cure everything.

Okay....what DO you eat? Gluten, dairy, soy and egg free.....sounds hard

[Jestgar]

I had Psoriatic Arthritis, which is almost exactly the same as RA. Soy and dairy are almost as bad on my joints as gluten.

Mine is affected by corn. I'm soy free for other reasons, and eat dairy.

Some people find that nightshades are the cause. If you think food might be causing your flares, you'll have to eliminate things one by one to find it. Also, my flares happen two days after I eat corn, so you'll need to cut things out for at least a week, and keep a food diary.

[chasbari]

Major rheumatoid arthritis. I was first diagnosed with that before being diagnosed with celiac. My RA titers were very high and I was experiencing much joint pain and gelling of the feet, hands, shoulders, knees, and more depending on how bad the flare was at that particular moment. Major mobility problems that kept getting worse. Very discouraging as I have always worked out and done physical labor. My rheumatologist began treatment with the standards...methatrexate and Enbrel. These caused problems for me with hearing loss and vocal dysphonia... problematic for me as a singing choir directing performer. I stopped them and tried to maintain through careful diet and found nightshades to be a major trigger.. especially potatoes. Still continued to get weaker and sicker. Finally diagnosed through endoscopy in February for celiac but had gone gluten-free in November. Switched to Paleo in late December and since then the rheumatoid arthritis has been melting away. I had blood drawn for an RA titer on Monday and am awaiting the numbers to see if I am right about it responding to my celiac diet. My rheumatologist (or shall I say..former rheumatologist) refused to believe that my RA was secondary to my celiac and leaky gut issues. In November I could barely get up out of a chair. Today I can wake up and hit the ground running. I still have some joint issues but also have bone density issues that need to right themselves along with my healing gut. But, now I have time and a sense that I am getting better...much better. Strict paleo though. I tried to incorporate all the alternative "safe" grains and foods but am way too early in the healing process to tolerate those. If I stay with my diet I feel better by the day.

[1grnthmb]

I have Rheumatoid arthritis along with Ankylosing spondylitis and degenerative joint disease. My doctors told me after I was diagnosed with Celiac Disease that it explained why I had the other problems. So there is an association between Celiac and other diseases that a good doctor will see. Being gluten free does help with the pain and stiffness form the arthritis (All Types). I really do not notice it until I have been glutened and then I have flare ups of the arthritis.

I really recommend that you press your doctors into finding out what is wrong with you. I went for years just accepting what the doctors where telling me when they were not really looking for what the problems were. As a result my arthritis and stomach problems just kept getting worse. It took about twenty years of going to bad doctors when I finally got fed up with them and started searching for a doctor that would help me and finally got good diagnoses of what my problems were. But by then a lot of damage had been done and I was determined to be disabled by the time I was 46. So get the help now before it causes severe problems.

[mushroom]

I have psoriatic arthritis (RA seronegative), and went gluten free after doing my research. My present rheumatologist is supportive of the gluten connection. Alas, while my intestinal issues cleared up, I have not noticed much improvement in the arthritis and psoriasis, so I am currently taking Humira (in my third month) and it seems to be helping where none of the other DMARDs did. It was four years before I connected all the dots; don't know if it would have helped sooner-- but I am sure I wouldn't have got it at all if doctors had listened and diagnosed the GI problems years ago.

[mimommy]

For all who have posted here who have been diagnosed--with anything, be it celiac, RA, Psoriatic arthritis--to me you are almost the lucky ones. Please believe me that I say that with deepest empathy for you and the utmost respect and sincerity. I am not so enlightened yet as to what is causing my pain and GI issues, and am crying while typing this because it can be soooo hard to deal with. It would be such a relief, bring some peace of mind, to KNOW why.

I can say to the positive, however, that my little girl has had no more joint pain symptoms since going gluten free

I feel your pain!

[lonewolf]

Okay....what DO you eat? Gluten, dairy, soy and egg free.....sounds hard

I eat quite well! gluten-free is easy now. Dairy free is hard because I love pizza. I do "cheat" with butter and some goat cheese occasionally. Soy free is hard and I'm not super strict about it. I can handle soy lecithin and small amounts of soybean oil. I avoid anything with soy protein and soy sauce and stuff that's obvious. I can do eggs, but I went over 10 years without them. That was trickier. I eat lots of chicken, turkey and fish, rice, vegetables, fruit, homemade baked goods, pasta, potatoes, tacos, soups, stews, Pamela's bread, Ener-G breads, Rice Chex, Corn Chex and the list goes on. I'm used to it and it doesn't even seem hard now.

For the first year after I discovered I had food allergies (sensitivities/intolerances, whatever) I couldn't eat all of the above plus nightshades, cruciferous veggies, any type of meat, citrus, peanuts, corn and most legumes. I ate fish, rice, vegetables, fruit, sunflower seeds and almonds. I could have things like rice cakes, rice milk and a couple types of cereal. I discovered a couple of things I could bake (carob brownies and something else) and a few treats (almond butter, honey and carob powder taste delicious if you're desperate for something that tastes sweet) and other than that I tried not to think about food.

It was a hard diet to stick to, but all signs of my arthritis and psoriasis went away, with significant improvement happening in the first few weeks and continuing until I was symptom free about 8 months into it. I kept going for a year and slowly started adding foods back to see what caused problems. Gluten, dairy, soy and eggs still were awful, but I got nightshades and citrus back as well as most other foods within a few months.

My psoriasis has come back and I'm not sure if it's because I cheat with dairy occasionally or because of the eggs or something else. But I'm healthy in every other way and have no joint pain whatsoever.

[Emmysweet]

Lonewolf---your story is so similar to mine. I just went and got mri results today and they said I had a tear in one of my discs in my neck---but I really, really think it is arthritis--mainly b/c the doc said that most people my age--39--would have a similar picture and "although its hard to tell, I think this disc here is the culprit." My hands hurt occassionally. since going gluten free, sugar free and a largely whole foods diet, my psoriasis has really improved (from all over to just my knees and below) and my arthritis in my hands has gotten much better. The arthritis in my feet is gone. BUT my neck-it still hurts. I started my diet on Jan. 1st. So it has only been less than 4 mths.

I have debated whether or not to go soy free. How did you come to this conclusion? My homeopath thinks soy is very very good for you. I have very little dairy---I eat eggs and the occasional plain, organic yogurt.

I also had the tingling sensation in my hands and that is mostly gone.

this forum is incredible and has really helped. To the person that was teary today---that was me in December. Hang in there--its a journey for sure but things do get better. E

[lonewolf]

I have debated whether or not to go soy free. How did you come to this conclusion? My homeopath thinks soy is very very good for you. I have very little dairy---I eat eggs and the occasional plain, organic yogurt.

I had a blood test done for delayed food allergies (an ELISA panel) several years ago. Gluten, dairy, soy, eggs, peanuts and beans all came out high, along with a few other things. After a couple of days off soy I had some soy milk and had a huge reaction - joint pain and swelling almost immediately. That was enough confirmation to me that the soy was bad for me. I've talked to other people with arthritis who also have found that soy is bad for them.

[kimis]

what kind of a doctor gives you these tests? I had a skin test done a year ago......my only allergies were some mold and ragweed. I didn't even have a reaction to wheat....thought that was kinda weird.

This is really hard.....how much food do I have to eliminate before i am eating my coffee table

[Jestgar]

Blood tests for food allergies or intolerances are very unreliable. You can use them as a starting point, but the only way to really know which foods are bothering you is to remove them one by one and see if anything changes.

[dilettantesteph]

I was diagnosed with RA before I was diagnosed with celiac disease. I only had to eliminate gluten and oats for it all to go away. I had to eliminate ALL gluten though and that has taken quite a lot of effort. It comes back when I get accidental gluten contamination. I had pain bad enough to make me quit ballet. Energy also comes and goes with gluten contamination. Now I can do so much when all the way gluten free.

[lonewolf]

what kind of a doctor gives you these tests? I had a skin test done a year ago......my only allergies were some mold and ragweed. I didn't even have a reaction to wheat....thought that was kinda weird.

This is really hard.....how much food do I have to eliminate before i am eating my coffee table

I had the testing done through my naturopath. A good friend just had the same type of testing done through her regular MD though. Jestgar is right though - there is some amount of unreliability and the test is a good starting point. For me, however, the foods that came up positive were right on - I don't think there were any false positives. Over time I got back a lot of the foods that were in the lower reaction category (probably due to healing "leaky gut"), but the 3 highest ones - gluten, dairy and soy are still problematic.

It was hard to be on such a limited diet. I had been in so much pain that I was ready to do anything to make it go away and not come back, so it was an easy choice for me. (I was at the point where we were looking at electric cart type wheelchairs because I couldn't use my hands, arms and shoulders, hips, knees or feet to get around any other way.) I was in so much pain that seriously, if I hadn't had 3 kids, I would have considered suicide. Only 5 days after eliminating everything that I mentioned in my earlier post I felt well enough to ride my bike in our neighborhood 4th of July parade. Couldn't have walked it, but even bike riding was a miracle for me. And the extreme limitations were temporary. Lots of people on this forum have more serious restrictions.

I would encourage you to either get tested or do an elimination diet - start with eliminating almost everything from your diet for a week. See if you can live on rice, chicken, fish, salad greens, non-citrus fruits and sunflower seeds or something and then start adding something that seems like it would be safe back into your diet and waiting for 4 days to see if you have a reaction. Wait to add dairy, soy, eggs, nightshades and red meat as long as possible. It's a hassle, but your health is worth it!

The "other side" of this for me is a healthy life. Besides the psoriasis that I still struggle with, I have no health problems at all. I teach PE, coach basketball, do triathlons and play in a women's basketball league.

[kimis]

I had the testing done through my naturopath. A good friend just had the same type of testing done through her regular MD though. Jestgar is right though - there is some amount of unreliability and the test is a good starting point. For me, however, the foods that came up positive were right on - I don't think there were any false positives. Over time I got back a lot of the foods that were in the lower reaction category (probably due to healing "leaky gut"), but the 3 highest ones - gluten, dairy and soy are still problematic.

It was hard to be on such a limited diet. I had been in so much pain that I was ready to do anything to make it go away and not come back, so it was an easy choice for me. (I was at the point where we were looking at electric cart type wheelchairs because I couldn't use my hands, arms and shoulders, hips, knees or feet to get around any other way.) I was in so much pain that seriously, if I hadn't had 3 kids, I would have considered suicide. Only 5 days after eliminating everything that I mentioned in my earlier post I felt well enough to ride my bike in our neighborhood 4th of July parade. Couldn't have walked it, but even bike riding was a miracle for me. And the extreme limitations were temporary. Lots of people on this forum have more serious restrictions.

I would encourage you to either get tested or do an elimination diet - start with eliminating almost everything from your diet for a week. See if you can live on rice, chicken, fish, salad greens, non-citrus fruits and sunflower seeds or something and then start adding something that seems like it would be safe back into your diet and waiting for 4 days to see if you have a reaction. Wait to add dairy, soy, eggs, nightshades and red meat as long as possible. It's a hassle, but your health is worth it!

The "other side" of this for me is a healthy life. Besides the psoriasis that I still struggle with, I have no health problems at all. I teach PE, coach basketball, do triathlons and play in a women's basketball league.

You sound amazing...can you recomend any books or websites about the elimination diet. I don't have a problem giving foods up, but I want to make sure I am eating the right stuff. I do love those nightshades (i'm italian) but I love running soooo much more!

[Emmysweet]

Me too Kimis! All I want to do is run again. My arthritis in my back/neck is keeping me from running.

We should both post of doing the elim. diet. I am anxious to try it. My diet right now is mostly whole foods, but with soy and some citrus.

Lonewolf--how long did it take to get pain free? I am happy for you. also--are there any frozon dinners that you can eat? I eat amy's tofu and rice--b/c its gluten free and has veggies and no sugar. I am the mother of 3 kids under 4 (yikes!--) and every once in a while I just can't make another meal and need something super fast.

[kimis]

Me too Kimis! All I want to do is run again. My arthritis in my back/neck is keeping me from running.

We should both post of doing the elim. diet. I am anxious to try it. My diet right now is mostly whole foods, but with soy and some citrus.

Lonewolf--how long did it take to get pain free? I am happy for you. also--are there any frozon dinners that you can eat? I eat amy's tofu and rice--b/c its gluten free and has veggies and no sugar. I am the mother of 3 kids under 4 (yikes!--) and every once in a while I just can't make another meal and need something super fast.

you have 3 kids under 4.....thats why your neck and back hurt........ha ha ha just kidding! That would be something my doctor would say to me....he told me I have premature arthritis cause I clean my house often.....WHATEVER DOC!

[ravenwoodglass]

You sound amazing...can you recomend any books or websites about the elimination diet. I don't have a problem giving foods up, but I want to make sure I am eating the right stuff. I do love those nightshades (i'm italian) but I love running soooo much more!

I was diagnosed through an elimination diet and then confirmed by my clueless GI doctor. If you can find an allergist to guide you through it and give you a starting point that is IMHO the best way to go. They can give you a starting point with foods that are most likely to be nonreactive for you.

[taweavmo3]

My son was diagnosed with psoriatic arthritis about a month ago....similar to rheumatoid, just called psoriatic if you have psoriasis.

I was bummed b/c I had kept him gluten free for the past couple of years in hopes of improving his psoriasis, and hoping to prevent more auto immune diseases from popping up. I've had to realize that diet doesn't cure everything, but he still eats gluten and casein free by choice b/c he feels better.

He's had one bad flare up, right after a strep throat infection, that resulted in a ton of fluid around his ankle. He had a tube place inside to let it drain for a few days. He hasn't had any more flares since then, just feels achy. He says his joints feel like "stiff socks" in the morning, lol.

Anyway, I don't have much more to add, except that these auto-immune diseases definately run in packs. It's all due to the same mechanism, it just takes a trigger, and wherever the antibodies attack....that's your disease! Hope you get some answers soon...I think we were lucky in a way that he had one bad flare up, now at least we know what we are dealing with.

[lonewolf]

Lonewolf--how long did it take to get pain free? I am happy for you. also--are there any frozon dinners that you can eat? I eat amy's tofu and rice--b/c its gluten free and has veggies and no sugar. I am the mother of 3 kids under 4 (yikes!--) and every once in a while I just can't make another meal and need something super fast.

It took about 8-9 months to be pain free without Advil.

I do understand how busy it gets with little kids! Mine are now 17, 15, 14 and 11 and the first 3 were 3 under 3-1/2, so I know it can be hard. The soy free thing really might help you though.

[Emmysweet]

I do understand how busy it gets with little kids! Mine are now 17, 15, 14 and 11 and the first 3 were 3 under 3-1/2, so I know it can be hard. The soy free thing really might help you though.