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Severe Bone And Joint Pain - Symptoms

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Hello all. I am new to the forum and I would appreciate any help and advice. Celiac was recently brought to my attention by my rheumatologist. I have had severe chronic pain my entire life (26 years) and have been to every doctor and tested for every condition known to man with no diagnosis or relief from my symptoms yet. The doctor mentioned celiac and did the blood test but it came back negative so we moved on to another possibility. I was recently told by someone that the blood tests often come back negative though so I got online to investigate. A gluten-free diet will be the hardest thing I have ever done but if I am gluten intolerant then it will be worth it to have some relief from my pain. The problem is, I don't want to put myself or my family through that unless I know pretty positively that there is a good chance it will make a change in my life. I will list my symptoms below:

Severe leg pain started in my ankles and progressively moved up my legs and I grew up to cover ankles, calves, knees, thighs, and now hips

Sciatic nerve pain (probably caused from walking to compensate for other leg pain)

ADD (no ability to focus or concentrate, forgetfullness, loss of memory even)

Sleep problems my entire life

anxiety

nausiousness and balance problems at times but more frequently than anyone should have them

hypoglycemia

borderline anemia

general muscle tenseness and inability to relax

stiffness

jaw clenching

mild stomach problems on and off my entire life but no regularity to my bathroom needs. Ha. I don't know how to say it medically. I only go to the bathroom (#2) about once a week but when I have to go I REALLY have to go and will go and then have to return very shortly and then have to go again.

As far as urinating, I have always said I have overactive bladder (I haven't been diagnosed) but I do have to go constantly.

I also have had a ridiculous amount of bladder and urinary tract infections in my life

I think that covers it but I'm sure I've left something out.

Does this sound like something that could be caused by gluten?

I would appreciate any help or advice. I know many with one auto-immune disease end up having another as well, so if you don't think it's celiac but have had experience with another type of disorder that you think it might be please also fill me in. I need help desperately.

Thanks!

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Hello and welcome to the board.

Yes, your symptoms do sound like they could emanate from gluten. And not everyone who has celiac tests positive on the tests. And many people have problems with gluten but have non-celiac gluten intolerance, not celiac. So the testing is not very definitive. Which leaves trying the gluten free diet as the only was to determine whether it will work for you or not.

In order not to put unecessary strain on your family, you can start by cutting out obvious gluten - don't eat bread, pizza, pasta, cookies, cake, etc. and see if you notice any improvement. You would at this point be mostly looking for improvement in your digestive symptoms since the neurological symptoms often take longer to resolve. If you notice an improvement in your digestion, it is time to go the 'whole hog' and eliminate gluten entirely. And you just can't worry about how your family is going to react to it. You have to do this for yourself and do what it takes to keep yourself gluten free. As you get older you will find there is nothing so precious as your health, and only you can safeguard it.

Best wishes in finding the root cause of your problems and let us know how you get on. :)

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Hello all. I am new to the forum and I would appreciate any help and advice. Celiac was recently brought to my attention by my rheumatologist. I have had severe chronic pain my entire life (26 years) and have been to every doctor and tested for every condition known to man with no diagnosis or relief from my symptoms yet. The doctor mentioned celiac and did the blood test but it came back negative so we moved on to another possibility. I was recently told by someone that the blood tests often come back negative though so I got online to investigate. A gluten-free diet will be the hardest thing I have ever done but if I am gluten intolerant then it will be worth it to have some relief from my pain. The problem is, I don't want to put myself or my family through that unless I know pretty positively that there is a good chance it will make a change in my life. I will list my symptoms below:

Severe leg pain started in my ankles and progressively moved up my legs and I grew up to cover ankles, calves, knees, thighs, and now hips

Sciatic nerve pain (probably caused from walking to compensate for other leg pain)

ADD (no ability to focus or concentrate, forgetfullness, loss of memory even)

Sleep problems my entire life

anxiety

nausiousness and balance problems at times but more frequently than anyone should have them

hypoglycemia

borderline anemia

general muscle tenseness and inability to relax

stiffness

jaw clenching

mild stomach problems on and off my entire life but no regularity to my bathroom needs. Ha. I don't know how to say it medically. I only go to the bathroom (#2) about once a week but when I have to go I REALLY have to go and will go and then have to return very shortly and then have to go again.

As far as urinating, I have always said I have overactive bladder (I haven't been diagnosed) but I do have to go constantly.

I also have had a ridiculous amount of bladder and urinary tract infections in my life

I think that covers it but I'm sure I've left something out.

Does this sound like something that could be caused by gluten?

I would appreciate any help or advice. I know many with one auto-immune disease end up having another as well, so if you don't think it's celiac but have had experience with another type of disorder that you think it might be please also fill me in. I need help desperately.

Thanks!

I would say your symptoms could be caused by sensitivity. Although not everything has a gluten link. As far as your digestive symptoms. Gluten sensitivites or celiac can cause diarrhea or constipation. For me, gluten stops me up pretty bad but once the bloat goes down I also get diarrhea.

Doing a gluten free test trial is not as hard as you may think. All you need to do is eat fresh meats, vegetables, fruits and nuts. If your health could posibly improve, what have you got to lose in your position? When i did a test trial, i didnt clean out pantry and kitchen. I just cut out processed foods, breads and breaded foods, pastas and so on. It was enough to see a huge difference!

I thought i would comment because i also have bladder symptoms that i have recently discovered has a direct link to glutening! When i went low carb my bladder had the capacity of "a normal" person instead of someone with I.C. When i reglutened for testing my symptoms were horrible. Constant urinating, pelvic aching, cramping and sharp pains, burning when voiding. Bladder problems have a link to food sensitivities.

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Hello all. I am new to the forum and I would appreciate any help and advice. Celiac was recently brought to my attention by my rheumatologist. I have had severe chronic pain my entire life (26 years) and have been to every doctor and tested for every condition known to man with no diagnosis or relief from my symptoms yet. The doctor mentioned celiac and did the blood test but it came back negative so we moved on to another possibility. I was recently told by someone that the blood tests often come back negative though so I got online to investigate. A gluten-free diet will be the hardest thing I have ever done but if I am gluten intolerant then it will be worth it to have some relief from my pain. The problem is, I don't want to put myself or my family through that unless I know pretty positively that there is a good chance it will make a change in my life. I will list my symptoms below:

Severe leg pain started in my ankles and progressively moved up my legs and I grew up to cover ankles, calves, knees, thighs, and now hips

Sciatic nerve pain (probably caused from walking to compensate for other leg pain)

ADD (no ability to focus or concentrate, forgetfullness, loss of memory even)

Sleep problems my entire life

anxiety

nausiousness and balance problems at times but more frequently than anyone should have them

hypoglycemia

borderline anemia

general muscle tenseness and inability to relax

stiffness

jaw clenching

mild stomach problems on and off my entire life but no regularity to my bathroom needs. Ha. I don't know how to say it medically. I only go to the bathroom (#2) about once a week but when I have to go I REALLY have to go and will go and then have to return very shortly and then have to go again.

As far as urinating, I have always said I have overactive bladder (I haven't been diagnosed) but I do have to go constantly.

I also have had a ridiculous amount of bladder and urinary tract infections in my life

I think that covers it but I'm sure I've left something out.

Does this sound like something that could be caused by gluten?

I would appreciate any help or advice. I know many with one auto-immune disease end up having another as well, so if you don't think it's celiac but have had experience with another type of disorder that you think it might be please also fill me in. I need help desperately.

Thanks!

Hello! I too am new to this site I joined at the beginning of this month. I have been battling the following symptoms from your list for the past 4 years:

Severe leg pain - mostly ankles, hips, thighs

Sciatic nerve pain and lower back constantly burning

Little to no ability to focus or concentrate, forgetfulness, loss of memory general "Fibro-Fog" mental issues

Sleep problems my entire life too

anxiety

nauseousness and balance problems at times I walk into walls and run into door jams when trying to go through them - run into furniture all the time and could barely navigate stairs.

hypoglycemia my entire life

general muscle tenseness and inability to relax - my entire life

stiffness - so bad when I wake up I have to hang my feet over the bed for 10 minutes to stretch my hips and my lower back so that I can stand up, then do calf stretches for each leg so that I can walk to the bathroom

jaw clenching - my entire life

mild stomach problems on and off

no regularity to my bathroom needs. I too go to the bathroom (#2) about once a week and then my body lets it all go - this has been my entire life

I too have to go constantly, I pee about 8 to 10 times a day.

I spent 2 years seeing a chiropractor with some results but I just kept getting worse. After vitamin deficiency tests and thyroid tests and everything my doctor could think of for the lethargy and mental issues which all came back negative/normal I went to Physical Therapy for 8 months. I saw the largest improvement in my range of motion and joint tenderness from PT but was still muscle cramping and in constant and daily pain that was overwhelming.

I went back to my doctor and he suggested he test me for a slew of autoimmune disorders and then send me to a Rheumatoid specialist to be assessed for permanent disability status.

I looked up the autoimmune disorders he wanted to test me for and Celiac was not among them but my symptoms looked more like Celiac than all the other autoimmune disorders, so I went gluten free for 4 days and the difference for me was remarkable so I went back on gluten and insisted my doctor test me for Celiac.

I came back negative as well, but I am on day 7 of my gluten free diet and I feel better than I have in 4 years. I feel alert, I'm not yawning all day barely able to keep my eyes open. My weird stiff walk and gait has almost disappeared, I still take some anti-inflammatory in the mornings to help with the lingering ache. My husband commented that I have the light back in my eyes which has been missing for years. I've been laughing and smiling at everything and just can not believe what a difference it has made for me. I'm sleeping through the night instead of waking 4 to 5 times. And though I did not believe that changing my diet was going to do anything to improve the ailments I was suffering from it did for me. Like everyone else I think the only way to know for sure is to go off gluten and see what difference it makes for you. I can't wait to see what 30 days gluten-free feels like.

My first 4 day test I just took myself off gluten and didn't worry about the rest of the family. If I made pasta I made myself rice to put the sauce on, I was freaking out about what changes I would have to make, but other than eating out the changes haven't been too drastic for me.

Good luck what ever you decide, I just thought you might want to here from someone who was negative on the blood test but decided to try gluten free anyway.

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