Another Diagnosis Compliments Of Celiac

[vbecton]

So, my blood work shows positive for rheumatoid arthritis. I have the extreme fatigue symptom for sure. However, my bones HURT in my low back, like my pelvis area, just above the tail bone. It's not a muscular ache, it's a bone ache. Could this be RA? Or more like Osteo-arthritis? Most RA people have issues with their hands and feet from what I can tell. I don't think the blood work could be wrong, but I didn't see anything in my research about pain where I feel it. But, then again, I haven't been textbook yet, so why start now

I meet with my GI next week about all these results, plus my low amino acid findings and my capsule results (that I did 2 days ago). I need to know what to ask about this RA thing. Do I need to see a rheumatologist yet?

[ravenwoodglass]

While I also had significant issues with my hands I also had pain in the areas you describe. One of the most surprising things to me after I was diagnosed was that the arthritis went into remission within a couple of months. In my case the rhuematologist was useless, not saying one would be for you though. My pain was so bad in my hips and back that walking was very difficult but when I went in all she wanted to do was inject something in my hand. I refused and when I said it was my back and hip that was the worst she told me I would have to learn to live with the pain and referred me to a chronic pain practice, I was diagnosed celiac before I got there.

I found it interesting that when I got my genes tested 5 years after my diagnosis that my gene is considered to be associated with RA here in the states. I hope you get as much relief as I did from the diet but it take take a month or two to really notice a difference. When I get glutened now the pain flares but I just take an asprin and that relieves it until the glutening is over.

There are some of us that have RA that have not had as much improvement as I did. You may also want to post this question in the 'related' section or do a board search and see what comes up that has helped others.

[kayo]

Hi vbecton,

It could be RA. If you sit a lot, and who doesn't, the pressure could be aggravating your hips and pelvis. Try getting up every now and then to stretch and loosen the joints. Even a little helps.

she told me I would have to learn to live with the pain and referred me to a chronic pain practice

Wow, another horrible doctor. There are so many ways to treat RA that don't include pain meds. Pain meds should be a last resort when all else fails.

My RA is doing well and all my diet changes have had an effect. I'm much less sore and swollen. Next step is finding out what came up positive on my RAST test.

[txplowgirl]

Hi vbecton,

I have RA also. I have found with the gluten-free diet it helps some but what has really helped me was getting rid of the nightshade vegetables. They cause a lot of swelling and pain because of the low level of toxins in them. And yes, I have it in my lower back and both hips. Once, I quit eating those I don't have the pain or the little catch in my back that feels like something caught on something. You know what I mean?

Anyway, if you don't know, the nightshade veggies are potatoes, tomatoes, eggplant and all bell peppers.

I've read several articles about them. Whether you have RA or other types of arthritis it really helps alot.

Get better soon.

Vicky

[vbecton]

Hi vbecton,

It could be RA. If you sit a lot, and who doesn't, the pressure could be aggravating your hips and pelvis. Try getting up every now and then to stretch and loosen the joints. Even a little helps.

Wow, another horrible doctor. There are so many ways to treat RA that don't include pain meds. Pain meds should be a last resort when all else fails.

My RA is doing well and all my diet changes have had an effect. I'm much less sore and swollen. Next step is finding out what came up positive on my RAST test.

I wish I sat down more. Even through my exhaustion, I am constantly up doing stuff. But, I'm trying to sit more often. Problem is, I just want to sleep the minute I sit down What is really killing my back are the compression movements in my workout. I am incorporating the eliptical machine (BORING!) instead of my cross training because the jumping around makes my backbones feel like popping out of my skin! When treatment time comes around I'll be coming to you for suggestions. I'm probably about to say something incredibly vain, but I'm afraid of doing the steroid treatments because I've heard horror stories about weight gain Is this true? I don't mind a few pounds for the sake of my bones, but any more than that and I'll FREAK.

[vbecton]

Hi vbecton,

I have RA also. I have found with the gluten-free diet it helps some but what has really helped me was getting rid of the nightshade vegetables. They cause a lot of swelling and pain because of the low level of toxins in them. And yes, I have it in my lower back and both hips. Once, I quit eating those I don't have the pain or the little catch in my back that feels like something caught on something. You know what I mean?

Anyway, if you don't know, the nightshade veggies are potatoes, tomatoes, eggplant and all bell peppers.

I've read several articles about them. Whether you have RA or other types of arthritis it really helps alot.

Get better soon.

Vicky

I was thinking the nightshades would eventually have to go and now is probably the right time. Since going gluten-free my back pain is much worse, so I want to cut down on anything inflammatory or aggravating. BUT, I love tomatoes and bell peppers!!! I grow 4 different kinds in my garden. Those poor babies. My husband will just have to eat them all.

[vbecton]

While I also had significant issues with my hands I also had pain in the areas you describe. One of the most surprising things to me after I was diagnosed was that the arthritis went into remission within a couple of months. In my case the rhuematologist was useless, not saying one would be for you though. My pain was so bad in my hips and back that walking was very difficult but when I went in all she wanted to do was inject something in my hand. I refused and when I said it was my back and hip that was the worst she told me I would have to learn to live with the pain and referred me to a chronic pain practice, I was diagnosed celiac before I got there.

I found it interesting that when I got my genes tested 5 years after my diagnosis that my gene is considered to be associated with RA here in the states. I hope you get as much relief as I did from the diet but it take take a month or two to really notice a difference. When I get glutened now the pain flares but I just take an asprin and that relieves it until the glutening is over.

There are some of us that have RA that have not had as much improvement as I did. You may also want to post this question in the 'related' section or do a board search and see what comes up that has helped others.

Well, I hope I'm lucky like you with this going into remission. The diet has helped so many of my symptoms, but other symptoms are still hanging around, or some are worse (bone pain). I hope this is all part of healing and that over time things will improve. That would be swell!

[txplowgirl]

Lol, I know what you mean. I love my baked potatoes. MMmmmmm good. I took them out for about 2 months then I challenged with a baked potato. Man, oh man, I woke up that next morning and my hands and ankles were swollen, my shoulders and back hurt. That lasted 3 days before I felt better. I didn't have another baked potato until just 3 weeks ago, that's been almost a year. Other than a little soreness in my shoulders it didn't bother me. I had another one last night. I woke up this morning with my hands kind of achy, soreness in my shoulders and ankles but no swelling. Took a couple of tylenol. Seems to be better. I can handle this i think if I keep it down to one every couple of weeks. I haven't tried tomatoes or bell peppers yet.

[ravenwoodglass]

I wish I sat down more. Even through my exhaustion, I am constantly up doing stuff. But, I'm trying to sit more often. Problem is, I just want to sleep the minute I sit down What is really killing my back are the compression movements in my workout. I am incorporating the eliptical machine (BORING!) instead of my cross training because the jumping around makes my backbones feel like popping out of my skin! When treatment time comes around I'll be coming to you for suggestions. I'm probably about to say something incredibly vain, but I'm afraid of doing the steroid treatments because I've heard horror stories about weight gain Is this true? I don't mind a few pounds for the sake of my bones, but any more than that and I'll FREAK.

You mention working out. I admire you continueing with that despite the pain. Are you seeing a physical therapist? If not you may want to ask your doctor for a script for a few sessions. Mine was very helpful in showing me certain excercises to strengthen areas that needed it without any pain and he also realized in the exam that one of my hips was out of place. He put it back in position that day and it made a great difference. I am a big fan of PT's since it was one of them who actually realized I might be celiac and she nagged me onto the right path to finally get diagnosed.

[vbecton]

You mention working out. I admire you continueing with that despite the pain. Are you seeing a physical therapist? If not you may want to ask your doctor for a script for a few sessions. Mine was very helpful in showing me certain excercises to strengthen areas that needed it without any pain and he also realized in the exam that one of my hips was out of place. He put it back in position that day and it made a great difference. I am a big fan of PT's since it was one of them who actually realized I might be celiac and she nagged me onto the right path to finally get diagnosed.

Good advice. I'm going to my chiro tomorrow who has a PT in his office. I'll see about squeezing myself right in his eyesight for some help I definitely need some help. I had a massage last week and almost fell in-love with the massage lady. I nearly fell to my knees and begged her to move in with me. I'm glad I composed myself enough to walk out of her office with some dignity because I definitely could use a massage EVERYDAY!

[Takala]

So, my blood work shows positive for rheumatoid arthritis. I have the extreme fatigue symptom for sure. However, my bones HURT in my low back, like my pelvis area, just above the tail bone. It's not a muscular ache, it's a bone ache. Could this be RA? Or more like Osteo-arthritis? Most RA people have issues with their hands and feet from what I can tell. I don't think the blood work could be wrong, but I didn't see anything in my research about pain where I feel it. But, then again, I haven't been textbook yet, so why start now

I meet with my GI next week about all these results, plus my low amino acid findings and my capsule results (that I did 2 days ago). I need to know what to ask about this RA thing. Do I need to see a rheumatologist yet?

_______________________

Lower back pain/ache is a symptom of Ankylosing Spondylitis. It is also called spondylopathy. Or spondylo arthritis. It is called a sero negative arthritis because typically the blood inflammation markers are different than for rheumatoid.

The symptoms can be confusing, but it is typlified by lower back pain, hip pain, neck pain, rib pain. It is inflammation of the tendons where they attach to the bones, and the joints and cartilage attachments. It also can have dry eyes and mouth ( Sjogen's syndrome). Long term can result in fusing of some of the vertebrae of the spine together, if the discs between them get damaged enough.

It presents differently in females than in males, males tend to fuse up much faster. Women may not fuse at all. It was erroneously thought that females "did not" get this decades ago, or got it very rarely, and they typically have trouble being diagnosed. It is considered an auto immune disease and is also hereditary in nature. People who are celiac/gluten intolerant are more likely to get it.

I don't know what to tell you with the positive rheumatoid marker and seeing a rheumatologist. I am sero negative for the blood tests but definitely have the arthritis, I was diagnosed in my twenties with this, I didn't think it was a big deal because of the doctor I had at the time. We moved out of that state about 25 years later, and when I changed medical practices I got the shock of my life because I didn't realize I had accidentally been lucky enough to have doctors who at least recognized this. Imagine you go to see a new doctor, you've been keeping up with your exercises, supplements, and haven't trashed yourself yet with heavy duty medication, and the doctors looks at you and go, tsk tsk, you don't have arthritis, you have "fibro."

Do NOT go into HMO insurance if you can help it with one of these diseases, because they are horrible and will just shuffle you around and not do anything.

It's not helpful or funny when you are having a side effect and need treatment (for example, my lungs don't clear out normally if I get sick ) and they are off in some sort of stone deaf fantasy world of not listening to the patient because their goal is to get you out the door as fast as possible.

When I see a new doctor now I automatically take a set of x ray images with me because this helps shortcut that process, altho now with the computerized medical records they can also pull up some of this so I can get it through their heads a little faster. Aging helps, also. Of course now with the aging, it is finally, sometimes, bothering my feet, ankles, or hands. It moves around.

Since the diet change, about 7 years ago, still a stunning drop in pain levels overall. But I don't have a normal person's energy and have to be careful.

I gave up on rheumatologists after trying to find one here who would at least properly re label me after several appointments where they showed they had no idea what spondylitis was, and realizing they were merely geared to pushing expensive drugs onto patients, and if the patient wasn't completely crippled up already they weren't interested.

Really, for me, sticking to the gluten free diet and doing range of motion exercises, and the vitamin/mineral supplements, is going to be just as good a result if not better. The spondy boards have been infested by the drug industry, and they are downright mean to the few of us wandering around still able to move without all the horrible drug side effects. Just thought I'd warn you. There is a starch free diet forum board on one, but trying to convince them that it needs to be a gluten free diet with low starch is a mental exercise most of them can't handle. The regular forum is not friendly to diet at all. Oh, well, that is what this place is for.

Or you could just have rheumatoid. Remember that taking a lot of anti inflammatory NSAIDs drugs like aspirin, ibuprofen, aleve naprosyn, etc, can cause your kidneys to rebel enough to cause back pain, also, because your kidneys can already be a bit stressed by celiac.

[T.H.]

Just to add another voice for diet changes....

A husband of a friend of ours was also diagnosed with RA. His was bad enough that he was in a wheelchair. Going off of gluten, nightshades, dairy, and wine, he has improved so much that he is not only off the wheelchair, he's a runner now. I know that this is not the case for everyone, but diet does seem to affect a lot of people with RA.

Myself? I have found out that I have HUGE back pain when I eat corn. It disappears when I stay away from the stuff. I only figured it out after going gluten free and checking out my other foods - just thought it was 'normal' for me, before that!

[ravenwoodglass]

Just to add another voice for diet changes....

A husband of a friend of ours was also diagnosed with RA. His was bad enough that he was in a wheelchair. Going off of gluten, nightshades, dairy, and wine, he has improved so much that he is not only off the wheelchair, he's a runner now. I know that this is not the case for everyone, but diet does seem to affect a lot of people with RA.

I find it interesting also that research shows a lot of RA patients have been labeled with 'IBS'. Makes me wonder how many may actually be celiac but noone has bothered to check for it.

[kayo]

I'm one of those with RA who was diagnosed with IBS and then dropped like a hot potato. No advice, no direction, not input. Just a bottle of anti-spasm pills (which didn't work).

I kept pursuing it and I knew I had Crohn's or celiac or something but I kept getting brushed off. When you have an auto-immune illness like RA everything is blamed on it and some docs aren't interested in looking at the big picture, how systems work together and how something simple like the wrong diet can have a devastating effect on how you feel.

I had to drop my last Rheumy because he said, 'what you eat has no effect on how you feel.' Bull poop.

My new Rheumy gets it and totally understands celiac. I'm lucky.