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shayre

Does Anyone Else Have Ra Or Myositis Or Lupus

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Hi. It's been a while since I've been on here. I used to be a personal fitness trainer, as I have a degree in exercise physiology. I have to admit that I feel totally lost now. I quit personal training several years ago to pursue other things, and I quit having any energy to exercise long ago. I have lost so much muscle! I am thin, but very out of shape. I am 39.

All of these years, I knew that I felt bad and tired, but felt like I was just too lazy. I was diagnosed with celiac disease about a year ago, and it was only diagnosed after having nuerological problems, muscular problems and food intolerances to everything. I have been gluten-free since then. Symptoms got better, but I still had issues that continued. I just had another scope and a pill camera done to see if that would shed light on why I am still so intolerant to food in general. I don't know the results yet. Anyway, I was also just diagnosed with Rheum Arthritis and Lupus is borderline. Dermatomyositis (autoimmune of the muscle tissue) hasn't shown positive, but I think that it's there. The doctor said that it sometimes takes years to show positive results, but yet it's still brewing around in there. I have been tested a few times before for RA and Lupus, and nothing has shown until now. I also have autoimmune thyroid problems and "thin" PCOS.

I want to weight train and do cardio so badly, but I am always so fatigued and in pain from my muscles and joints. I did myself in on the last time that I tried to weight train, and I've been to scared to try to work through it. I have not exercised since then. I am supposed to start treatment with methotrexate for the RA, but so far I am finding that the medication has gluten and other offensive ingredients...plus I am terrified to take the medication after doing research. Does anyone else have any experience with this drug or my issues?

Also, I cannot eat well enough. I take a butt-load of vitamins. I am low in D, B and Ferritin. Doc says to also take Folate. I take those and others. I have a brown rice protein shake, but I think that it's an incomplete protein source...so not doing great for me since it's not a complete protein. I am severely intolerant to dairy, soy and corn...among most everything else. Eating right for exercise is difficult. I'm always hungry with not enough to eat without adding exercise into my daily routine. Is there anyone else out there going through the same thing?

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I have RA, Sjogren's and my lupus indicators were very high although my doc felt I didn't have it. It was so bad before my DX for celiac that I had given up on exercise for many years. Got very weak. I might add that I am male and the incidence of these autoimmune diseases is about ten times more likely for women.. unless you happen to be celiac.. I think. When first treated for my RA before my celiac DX I was given methotrexate and Enbrel. I stopped the Enbrel immediately as I had a feeling it was very bad for me. The methotrexate did reduce my gel time a bit but I began to have hearing problems as well as loss of voice. It was masking the real problem. Once I was diagnosed properly with celiac I ended up going the paleo route and also following anti inflammatory dietary suggestions which meant eliminating all nightshades from my diet. No potatoes, tomatoes, eggplant or peppers for me. As a result my RA has all but gone into remission. I spent about 6 years in an extended flare that just never eased up and my systemic inflammation made it nearly impossible to walk as of three years ago. Once I went totally gluten and grain free I had noticeable improvement in mobility within the first forty eight hours. It was truly that drastic. I now workout regularly (See my FWIW post.) If I happen to eat potatoes I am in an instant flare and no good for several days to a week or more so I avoid them like the plague. It did take some time before I could tolerate heavy workouts. If I pushed too much in the first year I would suffer setbacks and feel I may have compromised my gut recovery to a degree. I rely on my HIT style training for my cardiovascular training as well and have continued to get healthier and stronger. I had always had success in improving cardiac efficiency through strength training alone in the past and find that to be even more so now. But, I also understand those who enjoy a separate cardio type training. You might find that this hinders recovery for a while. I have learned to be stingy with my limited metabolic capacity and resources and am now recovering quite quickly from some very intense workouts. Brief, but intense. I wish you well in your journey back to strength and health.

CS

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what were your symptoms with R.A? Lupus? I am in the process of getting tested, haven't got my results, but am very stressed out about it.

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what were your symptoms with R.A? Lupus? I am in the process of getting tested, haven't got my results, but am very stressed out about it.

I also am in the process of being tested,,,,definitely stressful :ph34r:

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I tested RA seronegative. Even so he still diagnosed me with RA, until the psoriasis appeared, and then I was diagnosed with psoriatic arthritis. Which has not responded to gluten free diet :(

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Well, I have been suspecting some sort of autoimmune joint issue, but I have no desire to get any tests.

But something I have found to be very helpful is Glucosamine HCL. The product I happen to take also has MSM, but I don't know if that has any effect. I started taking it for TMJ, which it has worked miracles on. Then I noticed my joints improving too. A nice added benefit :)

BTW, it is not so important to consume a so-called "complete" protein. What the body actually needs is the amino acids. And, the smaller the proteins, the easier the body can break them down and get at the amino acids. Then it reassembles them into the types of proteins the body needs. If you can eat coconut, you may wish to try Coconut Aminos. If you can eat lentils, you may also find those helpful, as they offer a whole lot of protein compared to many other foods.

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Chili...symptoms of RA for me are joint pain all over, but sort of burning pain in hands and feet. I know that it can cause surrounding tissue to hurt, so I hurt all over. As far as Lupus, aching all over, sun sensitivity, rash and patchy skin coloring. Again, Lupus was borderline, but not positive for me. I have symptoms of myositis too, but not positive testing...severe muscle aches, stiffness, weakness, sun sensitivity, voice hoarseness, sometimes breathing hard. I found a GREAT and very thourough Rheumatologist, and she is able to sort of get a better picture of what is going on even when tests don't show things for sure. Again, she said that you could have autoimmune problems grumbling around years before they show positive, so I'm taking the borderline Lupus very seriously. We both also think that there is more going on. I have a hard time distinguishing symptoms between the different issues and getting glutened. My doc said that gluten contamination could also be causing flare-ups of RA and the others.

Anyway, just because your tests don't show something, doesn't mean that it isn't there causing you harm! You should use your own judgement too. My first Rheum doc pretty much blew me off. I guess that I look pretty healthy even though I feel absolutely terrible, so there have been a few docs and friends who have not taken me seriously. Am I supposed to sit around and do nothing until the other stuff gets bad enough to show positive...ugh. My doc decided to wait on the Methotrexate, and thought that I could try Plaquenil with a month of Prednisone for now. I am having them compounded at a pharmacy to not contain gluten, lactose, soy or corn....didn't know that they could do that until now. So I will see how that goes. You guys should look up Arthri-D on the net. I watched a conversation about it on TV, and if I'm not mistaken...you can watch it on their website. There is a lot of good information on it. I am skeptical about some natural products advertised, but this looks really good! I believe them to be sincere. I am willing to try it, but it's so expensive. Tell me what you think if you watch it? It sounds too good to be true...but true. It does have the glucosamine and chondroitin in it, but other stuff.

It has recently come to my attention that I am getting cross-contaminated with my mixed household...so we are going gluten free for the whole house. We are not there yet, as my family has to eat all of the stocked gluten first, but we are close now. I am already feeling a lot better with less gluten to handle or be contaminated with. I ALMOST feel like I could start excercising soon...still afraid. I always go into the gym with the intention on taking it easy, but I always end up doing more than I should...SUCKS! I'll have to get a better grip on that for sure. Are any of you still in a mixed household? If you are...I might advise that you change that, but I will keep you posted. I have heard about the potatoes...nightshades, etc. I still don't know if it really effects me or not. I will play around with that soon enough. I don't know if I could get rid of rice until I can eat more than 5 things again. Oh, time will only tell.

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I have heard about the potatoes...nightshades, etc. I still don't know if it really effects me or not. I will play around with that soon enough. I don't know if I could get rid of rice until I can eat more than 5 things again.

Yes, I also found nightshades to be a real troublemaker. Just one little bit of potato and I literally couldn't walk for two weeks. The pains and weakness they'd cause me would last even longer. For quite a while I had no idea what was causing me so much hurt, since I was eating them often enough that the effects never really wore off to the point where it'd become obvious. So I'd advise giving it a good long try.

As for rice or other grains, there are certainly a number of grain-free options. So if you want to try avoiding those, it shouldn't really be too challenging. For instance, buckwheat is very versatile, and it is actually not a grain, nor is it related to wheat at all. It is a seed related to rhubarb! Buckwheat cooks very quickly too. There's also amaranth and quinoa, neither of which are grains. Lentils are a very nutritious and easy to prepare option too. But do make certain that the products you select are tested to be gluten-free. Buckwheat can be especially problematic in this respect, since it is often transported, stored, and processed in the same facilities as wheat. The Eden Organic brand of buckwheat has been safe for me thus far.

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Oh, and I forgot...nose ulcers and facial flushing are also symptoms of lupus. I have nose ulcers, but I had no idea that I had them until this recent doctor. They didn't bother me at all. All other docs missed it. Mouth ulcers also symtom, but I didn't have any. I hope that you guys going through testing either really don't have it...and if you do... at least testing that shows something. It's hard being in limbo, when you are trying to figure out what's wrong with you, but tests aren't showing. I hope that you all can find good docs who will look at the big picture and just use good common sense. My doc said that Plaquenil will help Lupus more, and RA a little. However, like the other drugs...it will help all autoimmune problems including celiac.

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Yes, I also found nightshades to be a real troublemaker. Just one little bit of potato and I literally couldn't walk for two weeks. The pains and weakness they'd cause me would last even longer. For quite a while I had no idea what was causing me so much hurt, since I was eating them often enough that the effects never really wore off to the point where it'd become obvious. So I'd advise giving it a good long try.

As for rice or other grains, there are certainly a number of grain-free options. So if you want to try avoiding those, it shouldn't really be too challenging. For instance, buckwheat is very versatile, and it is actually not a grain, nor is it related to wheat at all. It is a seed related to rhubarb! Buckwheat cooks very quickly too. There's also amaranth and quinoa, neither of which are grains. Lentils are a very nutritious and easy to prepare option too. But do make certain that the products you select are tested to be gluten-free. Buckwheat can be especially problematic in this respect, since it is often transported, stored, and processed in the same facilities as wheat. The Eden Organic brand of buckwheat has been safe for me thus far.

Hi RiceGuy. Are you an engineer or scientist...saw your quote? I will give the potato thing a try, but I want to nail down the effect that having all gluten out of the house has on me first. I hesitate to even start taking the drugs, because I don't want to be confused about why I'm feeling better...but I might cave in on that.

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Well, I have been suspecting some sort of autoimmune joint issue, but I have no desire to get any tests.

But something I have found to be very helpful is Glucosamine HCL. The product I happen to take also has MSM, but I don't know if that has any effect. I started taking it for TMJ, which it has worked miracles on. Then I noticed my joints improving too. A nice added benefit :)

BTW, it is not so important to consume a so-called "complete" protein. What the body actually needs is the amino acids. And, the smaller the proteins, the easier the body can break them down and get at the amino acids. Then it reassembles them into the types of proteins the body needs. If you can eat coconut, you may wish to try Coconut Aminos. If you can eat lentils, you may also find those helpful, as they offer a whole lot of protein compared to many other foods.

Sorry RiceGuy. I forgot to comment on this. If I could eat coconut without feeling sick...I might give it a try. However regarding the proteins, part of my degree was involving lots of nutrition classes. Now, I am not saying that I'm right, but I'll just tell you what I learned. There are NON-ESSENTIAL amino acid proteins, that can be eaten alone. For the 10 essential amino acids...you have to have them in "complete" form, or it won't metabolize the way that is needed. For example, meat contains all of the essential amino acids, so that is in itself a complete protein. If you are a vegetarian...then the recommendation is to combine partial proteins in order to make up a complete protein, so that they work together to do their job. For example, beans and rice each have some of the essential amino acids but not all...so having them together will make a complete protein. I am a little fuzzy on things, because it's been so long since I've had to educate anyone on fitness and nutrition...so I hope that I am remembering correctly...feels like a lifetime ago. I could drag out all of my old nutrition books if you need me to. The question that I had about my protein mix, was that I didn't know if they manufactured it to be a "complete" protein or not. I am not good about knowing which amino acids are in which foods, so trying to know combinations of food is just too much work for me right now. Does your supplement contain all of the "essential" amino acids? There are 10.

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Sorry RiceGuy. I forgot to comment on this. If I could eat coconut without feeling sick...I might give it a try. However regarding the proteins, part of my degree was involving lots of nutrition classes. Now, I am not saying that I'm right, but I'll just tell you what I learned. There are NON-ESSENTIAL amino acid proteins, that can be eaten alone. For the 10 essential amino acids...you have to have them in "complete" form, or it won't metabolize the way that is needed. For example, meat contains all of the essential amino acids, so that is in itself a complete protein. If you are a vegetarian...then the recommendation is to combine partial proteins in order to make up a complete protein, so that they work together to do their job. For example, beans and rice each have some of the essential amino acids but not all...so having them together will make a complete protein. I am a little fuzzy on things, because it's been so long since I've had to educate anyone on fitness and nutrition...so I hope that I am remembering correctly...feels like a lifetime ago. I could drag out all of my old nutrition books if you need me to. The question that I had about my protein mix, was that I didn't know if they manufactured it to be a "complete" protein or not. I am not good about knowing which amino acids are in which foods, so trying to know combinations of food is just too much work for me right now. Does your supplement contain all of the "essential" amino acids? There are 10.

That's unfortunate about coconut making you feel sick. Although, the aminos product I mentioned isn't made from the nut itself, but from a sap of the tree. Not sure it that would make a difference for you or not. I wonder if perhaps the sick feeling you experience could be yeast die-off, because coconut oil contains a healthy amount of caprylic acid, which is very effective against yeast overgrowth.

Yes, I am aware of the difference between the essential and non-essential amino acids. Generally I don't bother to make a distinction because it can get a bit technical, and thus confusing for most folks. So I'll often say a food has all of them if it covers the essential ones. Of the 10 known to be essential, tyrosine is one of those said to be conditionally essential, but most healthy adults don't actually require it. So there are 9 essential amino acids for most adults. Until adulthood, tyrosine is essential. But of the 20 which the human body has been determined to require, some can be synthesized. So although humans need them all, they don't all have to be included in the diet (for most healthy people). That's what I've read anyway. Those who wish to research the subject may find this informative.

As for needing to combine foods to get a "complete" protein, that was the thinking some years ago, but this is now known not to be true. While the essential amino acids do need to be included in the diet, they don't have to be there all at once, as in one meal, in order for protein synthesis to take place. A healthy vegetarian diet easily supplies the body with all the essential amino acids. Where many vegetarians and vegans fail, is the total protein intake, perhaps due to a lack of protein-rich foods like legumes and whole grains.

I find that getting a large enough total amount of protein in the diet isn't difficult, as I eat plenty of protein-rich foods, such as legumes, whole grains, and compliment them with plenty of green vegetables. So I haven't had to take a protein supplement.

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I find this topic interesting for a number of reasons. Wow - that so many of us celiacs have/suspect we have RA or Lupus. Yikes. I'm almost 42 & have been gluten-free for about 7 years but since January have had 4 big joint pain episodes - hands/wrists/elbows mostly but also some knee & ankle/foot pain.

1st episode - just after Christmas, wasn't doing much activity at all

2nd episode - a month later, unknown trigger

3rd episode - I am very active but my 3rd episode came on after lifting weights (lighter than I was used to).

4th episode - while travelling in varying elevations in very rainy weather for a few days

I teach fitness & I run & swim...as I said, I've given up on weights for now. Most of my teaching is in the water & I gotta say, getting in the pool makes everything feel better ! I do dumbbell work in the water with my classes but I have to be careful with my grip & range of motion. OP - try walking or water walking/running. We have a river section in our pool where one can walk against resistance or you could put a flotation belt on & run in the deep water, or take a class or two for ideas. Progress slowly.

I was RH negative but RA seems likely since it is very symmetrical. My right (dominant) hand is constantly swollen in the area of the first two knuckles (base of fingers). It was xrayed in January but clear - when (if?) the 5th episode happens, I will go in to my doc & get a rheumatologist referral to follow up...because when it's bad, it's really bad ! It's not just a strained feeling but a deep consistent ache that tylenol or ibuprofen can't touch.

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My diagnoses progressed from polymyalgia rheumatica, to sero-negative RA to psoriatic arthritis once the psoriasis made its ugly appearance. I became quite crippled by it (hands - thumbs, index and middle fingers on both hands) wrists, neck and shoulders, toes and balls of my feet). I went gluten free of my own accord three years later but not long after began treatment with Humira when all other medications failed or I became intolerant of them. I now have complete relief of arthritis and psoriasis. I challenged (a two-month trial without Humira) and all the symptoms began to return full-force, so it is obvious that the dietary change (gluten, corn, soy, nighshades, legumes) has not worked for me. :(

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For those of you who need testing...

I tested negative for RA a few times in the past year. It wasn't until I saw a good Rheum doc that the test showed positive. She said that most doctors will do a "generalized" single blood test for RA (with all RA types mixed into one test). She said that she never does that, and will automatically run a test for 3-4 specific antibodies for RA. When she did that...I had it come up positive. Some docs miss that if they don't get specific enough. We retested and it was positive again.

I taught a few water aerobics class before. It was fun. I may have to see about doing that again...just not much of a water person. I so much prefer the weight training:)

Did anyone look into the Arthri-D yet, and watch the interview?

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