Joint/body Pain & Pots Versus Another Cause Like Celiac - Do You Ache?

[iheartcats]

I'm back on Gluten for a few reasons.

One, being off Gluten didn't really help with my symptoms and it was hard on me (and cooking for the spouse) completely GF. Two, my Rheum will run a blood test after three months back on to see what my levels are. Three, if my levels are still elevated I have to be eating Gluten steadily for a biopsy anyway (which I prefer to have as it is more definitive than anything else) so I have to eat Gluten for that.

Sometimes I can eat a bunch of Gluten and seem fine. Others, I'll notice I have some body/joint aches afterward. But - I have no idea if it's the Gluten, something else, or just POTS! My Rheum can't, of course, pin-point it either and we may never know and it's annoying.

What type of body aches does everyone get with POTS? Do you notice random body aches/joint pain sometimes? I believe I do get these from weather changes and over-exertion and tiredness. But do I get more from Gluten? I don't know. It's only sometimes!

[Chaos]

I get lots of joint and body aches and haven't been able to link it to anything in particular. I've always assumed it was related to my hypermobility issues.

I have noticed some definite reactions when I eat too many carbs (complex carbs) without enough protein but when I tried to cut out gluten, I was not a happy camper. I have had a biopsy and a blood test for celiac and they were both negative.

For me it seems best to try to eat "everything in moderation".

[ramakentesh]

I get aches and pains and SOMETIMES it relates to what I eat - but not just wheat but all starchie foods. My aches are from Ankylosing Spondylitis which I got when I got POTS. You can get a simple gene test to see if you have the gene HLA B27. In females it doesnt usually attack the back.

Its probably a long shot but might provide an explanation,. They theory is that its an autoimmune reaction to a bug that resembles starch so the body attacks itself when you eat starchie foods (all carbs etc).

[Elfie]

That was my first symptom and docs are still not sure what it is caused by. I actually though for two years that I was dizzy or passing out from the joint pain. Then I go to the doc and find out I have POTS. They were able to narrow my joint pain (which I swore was deep in my major joints) down to being nerve-related, but just like POTS there is nothing structurally wrong with the nerves and don't have muscle pain or the trigger points of fibro. Mine is not related to gluten or starch. I have had periods this year for the first time in three plus years where I have relatively little pain and am only getting a lot of it when I am stressed, run down, have done a lot. In this way it is very similar to my POTS. If it starts bothering me in a more intense/constant sense again I will try to look into it more, but we only have one neurologist in our community and she bills to all insurances but belongs to none.

[toddm1960]

I like rama have the gene marker HLA-B27, but I run ultra low CRP levels.....<.03 I have days where joint in my body is screaming at me, it's hard to walk I move very slowly. But everyday I have the back pain, pin point pain the size of a dime burning sharp from right below my neck to my lower back. I've been neg on celiac testing, and haven't noticed any difference from what I eat.

[sue1234]

I don't really have any pain. My POTS symptoms are only with my b/p and heart rate problems, SOB when walking, and the adrenaline that's ready at any time.

As far as celiac, almost every story I have read on the various celiac boards say their body/joint pains were eliminated with a gluten-free diet, and sometimes also had to eliminate casein(dairy) and soy from their diets. Many of them had been diagnosed for years with fibromyalgia or chronic fatigue. It is so amazing to me how that one protein can wreak so much havoc in the body! There are also MANY peopel on those boards who say that their tests came back negative, but went gluten-free anyway and have felt tremendously better. They talk about their constant brain fog lifting, energy returns, etc.

I tested 4x high on my IGA gliadin antibody, but negative on biopsy, so doctor just said no celiac. I have since read in a Dr.'s bood on celiac that that actually means I am gluten intolerant, not celiac, but with the same repurcussions from eating gluten. So, I am in the phase of learning all that I can and can't ingest--down to communion wafers and lipstick! Gluten is everywhere!

[sandymbme]

I too have joint pain, which along with pain from severe migraines can be crippling. I tried a gluten free diet, but did not notice any marked improvement, and as it was very expensive for someone with means as limited as mine, I went back to gluten. I do try to be gluten conscious, and not overdo the carbs, but I no longer try to avoid them completely. I was able to get some relief by going through a pain management program that included physical therapy, education, and group counseling. Unfortunately at the moment I am dealing with a serious downturn in my health and am currently too weak to do any of the exercises I learned in the program. Getting out of bed at all is a real challenge these days. And insult to injury is the fact that we have had a storm front basically hovering over my area for the last couple of weeks. And weather definitely plays a big role in how I feel! So I am currently left with trying relaxation techniques and praying for sun! For the record, I have only ever had imperfect result with painkillers, and between side effects and the rebound headaches they can cause I have decided they are not worth the trouble.

Sandy

[Guest humanb4monitor]

I am learning here--thanks.

My overall pain practically STARTED with a trauma end of may.

OVERALL.

Had touches before but now---cry over it.

But sleep disorders were worsened because of it as well.

I feel like once we get a tad ok on one thing..............I am so sad of being sad and tired of being tired. When I have finally been this depleted, I know it is bad.

WHEN I CAN USE LEGAL STIMULANTS THAT WOULD NORMALLY MAKE ME INSANE, AND I CAN GO TO SLEEP...I KNOW IT IS SERIOUS

[Dizzysillyak]

I was gluten free, casein free, soy free, corn free and egg free for a couple of years and never noticed any reduction in my pain. Then I started on a Paleo / low carb / low oxalate diet and was still having pain from time to time ...

Eventually, I noticed that if I take fish oil twice a day and strickly avoid bacon, pork ribs and tomatoes I'm completely pain free. The last time I worked in my yard for hours, shoveling, etc which I hardly ever do .. and I recovered from the muscle spams in 24 - 48 hrs.

I was wondering if this was related to inflamed mast cells in our connective tissues ...

[iheartcats]

It seems like it is so varied amongst us. I appreciate everyone sharing. The joint aches and pains are not fun and, even if you learn to tolerate them, are still 'there' and make on irritable and uncomfortable!

I do not have the Ankylosing Spondylitis gene so I assume that can mostly be ruled out?

I did get results back today for a Celiac genetic thing I had done and I'm low-risk. I just didn't feel much different GF and it was hard to stay on and expensive. If I had to I would...but nothing really changed for me.

Now I wonder about my mast cells. Pollen count has been very high lately so maybe they are very active? I just wish we could know!

[tinkerbella]

Joint pain has been something that has been with me for many long years. Along with weakness with my left side of the left body. This often will make it difficult when I notice a super flare. I will question is something else wrong? Usually there is...Like the time my ck was up to 650 and I had to get off leviquin and then caduet.

I have new joint pain going one now and found out that it is from coming off the florinef and can last to up to one year. This is something I never knew about. My joints have been swelling more than usually, and especiailly if I try to stand. Makes me assume the same thing would happen with midrodine. I wish I never took florinef as I had nothing but infections and now pain, pain, pain that will not respond to anything. So if you have been on these meds or are on them they may be contributing to your joint pain.

We need to listen to our bodies and what it is telling us. Report all symptoms to be documented... Now I need to be fitted for compression stocking as the ones I've bought don't fit my legs that are now two different sizes. I wish none of us had this terrible joint pain, but always report it and make sure it your doc know what it going on in case something eles is going on.

Bellamia

[potsgirl]

Good advice!

[jump]

I have a friend who does not have POTS and does not have Celiac disease, but does have weird numbers when she gets tested for autoimmune diseases and does have joint pain. RA runs in her family.

She does notice a difference in her joint pain when she doesn't eat gluten, even though she doesn't have celiac disease. She stopped eating it for two weeks, didn't really notice much difference, but then did notice an increase in pain when she started eating it again. She doesn't eat completely gluten-free now - she'll occasionally have a slice of birthday cake, etc - but she tries to eat GF most of the time.

As far as I know, there isn't necessarily a connection between joint pain and Celiac so much as there is a connection between gluten and RA and other inflammatory disorders.

[issie]

I've noticed I have more pain when I eat anything from the nightshade family -- white potatoes, tomatoes, peppers, eggplant. I do notice less swelling if I avoid gluten, but didn't test as being allergic to it. I have severe pain -- all over. I think it is ED and FMS related. I didn't know there was a gentic test for Anklosing Spondilities (sp). My Dad has that. They did any x-ray of my sacram and said there was the start of arthritis there and that's where it would show up first. But at this point, they don't think that's an issue.

[scarfgirl]

My constant joint/body pain turned out to be because of a vitamin D deficiency. After about a month of supplementation it went away. It's back now, but I'm pretty sure what's going on this time is an infection related joint ache.

[DEBRAA99]

When I have a bad flare, my legs hurt quite bad. They feel so heavy and sore, like I ran a marathon. I have been in the ER before, and my legs will start shaking so bad the bed rocks. The docs say its just anxiety!!!!!

[tinkerbella]

I'm sorry to hear that as I know how bad my legs hurt me. When I have to go to the ER my doc tells me to go into the City where the Specialist are so I don't have to put up with careless comments like that. The only problem is when an emergency comes on I have no way of getting into the city. I really hate it when I'm in so much pain doing a Pots 101 mini lecture to educate the docs. I'll be glad when the,''Changes documentary,'' can be on youtube and I can say go watch it first and then come back and see me. : ) I will feel more empowered in the ER then. Never again be called a hyperventerlator along with many other mean things due to lack of knowledge.

I think we could all use some (((((((((((HUGS ))))))))))) a big order all around for everyone tonight!

Time for me to go take something for my painful legs right now and hope it will give me some relief as the alarm goes off at 5 am to go into the hospital for my fluids. How Dry I Am!

Blessings,

BellaMia~*

[Guest humanb4monitor]

It was only discomfort a tad, till the end of last month. Now it is severe because of sleep and CFS. Absolutely.

I know I sound like a wreck---sadly I am