Swollen Joint From Celiac?

[Lisa16]

Hi everybody!

My ankle has been swollen for 9 days now and it is getting worse (swelling is extending and becoming more painful. Small veins are breaking.) It is on one side only.

Preliminary blood tests exclude gout, infection and the CRP levels for inflammation are within the normal range. Sonogram reveals no blood clots. X-rays reveal no break. There was no inital trauma-- the ankle blew up spontaneously. I had been walking 4 miles per day with no problem. Diet is low in salt, no red meat, no smoking and no alcohol. No medications besides ibuprofen for the swelling.

Tests are in the works for lyme disease and arthritis and a few other things he didn't explain. I think he might have mentioned one for lupus?

Could this be something related to the celiac, like the body attacking the joint because of an assocaited autoimmune disorder? Has anybody had anything like this? Any ideas?

[mftnchn]

I'm not sure, seems like you are covering the basics. Be sure your lyme testing is through Igenex lab. They have a much better rate of detection. Many labs are as low as 40% accuracy.

Any changes in diet?

[BelievinMiracles]

Hey I have the same problems except that my CRP levels were abnormal. I was supposed to go to a rheumatologist but my insurance changed right before my appointment. They were going to see if I had rheumatory arthritis, lupus, chronic fatigue and fibromalagya. My joints started hurting about the same time as my symptoms but the diet has helped my joints at all! My affected joints are my ring finger on both right and left hand, left toes, and randomly my knees and elbows and my jaw...

[plantime]

I get extremely painful swollen joints when I eat gluten. Nothing ever shows up on any tests. I think it is just part of my reaction to gluten.

[Lisa16]

Thanks for the replies!

No, there has been no change in diet and I am 100% sure I didn't get glutened because I get immediate D from that and I have been okay. The CRP test was done on the second day of the swelling-- I am not sure if he repeated it and I never saw actual numbers.

I have been reading a little about lupus and some parts (oh man!) seem to fit. Fatigue, mouth sores, food sensitivities, trouble sleeping, etc. But that goes with the celiac territory too. Many that is just a pan-auto-immune type profile.

But seriously, what are the odds of getting both? Can't be. Is there anything else it could be?

[BelievinMiracles]

Thanks for the replies!

No, there has been no change in diet and I am 100% sure I didn't get glutened because I get immediate D from that and I have been okay. The CRP test was done on the second day of the swelling-- I am not sure if he repeated it and I never saw actual numbers.

I have been reading a little about lupus and some parts (oh man!) seem to fit. Fatigue, mouth sores, food sensitivities, trouble sleeping, etc. But that goes with the celiac territory too. Many that is just a pan-auto-immune type profile.

But seriously, what are the odds of getting both? Can't be. Is there anything else it could be?

Actually from what I understand, if you have one autoimmune disorder, you are more likely than others to have multiple autoimmune disorders, which can also be diabetes, rheumatoid arthritis, lupus, etc

[dally099]

hi, i too get swollen joints, usually in my hands and ankles and knees, i though they were running injuries but once i cut the gluten out they went away, i think its a reaction to gluten (just my thoughts) RA is sometihng you can look into as well it is autoimmune, its a simple blood test. your not alone on this one though i have read lots of post here with people who get this!

[torontosue]

It's interesting this topic has come up. I just logged on to post a similar question. It's been about 2 weeks for me, my left knee has near doubled in size and walking is brutally painful. Doesn't help I have a job where I'm on my feet all day either.

I'm pretty sure it's from a gluten exposure, I've never ever had knee problems in my life, I didn't have any trauma, but it started just as I was reacting with D from a gluten containing skin cream that I had been testing ... I wasn't aware it contained the gluten til I started getting sick, and within a day of coming off the cream, my knee started up. It's been 2 weeks now, and the other symptoms have gone away, but the knee just keeps on getting worse.

So, If I'm not being exposed to the gluten any more, how long should I expect it to take til my swelling goes away and my knee goes back to normal?

My regularly scheduled doctor's appointment is for the following week anyway, so if it doesn't go away on it's own, at least I can have her take a look.

[dksart]

I am having a very similar reaction right now, but I almost always assume any joint pain and swelling came from gluten. I had to purchase an ankle brace it's so bad this time. I have to keep it propped up and apply ice packs to keep the swelling down.

I,too, am quite sensitive to even the slightest cc. I usually get D soon afterward, but not every time. You may have been unknowingly exposed and only got this one symptom.

[ohsotired]

I'm dealing with this as well, only in my hands and a little in my feet.

I'll awake in the morning with extremely stiff fingers and toes, and my hands will be swollen just enough to make my skin feel tight. The swelling usually subsides after I get moving in the mornings, and I have not noticed any swelling in my feet.

The joints in my fingers hurt all day long, and I have very little strength in my hands (have trouble opening jars & bottles) and have trouble holding on to smaller items (like pens/pencils/tootbrush/etc).

My GP is running tests for RA and lupus, as well as some other things. Should have results on Monday.

I'm really hoping it's just the Celiac Disease, and not something else along with it.

Keep us updated on your knee! I hope it gets better soon!

[dksart]

I'm dealing with this as well, only in my hands and a little in my feet.

I'll awake in the morning with extremely stiff fingers and toes, and my hands will be swollen just enough to make my skin feel tight. The swelling usually subsides after I get moving in the mornings, and I have not noticed any swelling in my feet.

The joints in my fingers hurt all day long, and I have very little strength in my hands (have trouble opening jars & bottles) and have trouble holding on to smaller items (like pens/pencils/tootbrush/etc).

My GP is running tests for RA and lupus, as well as some other things. Should have results on Monday.

I'm really hoping it's just the Celiac Disease, and not something else along with it.

Keep us updated on your knee! I hope it gets better soon!

I have exactly the same arthritic reactions in my hands and feet. It is just much worse when I get glutened and this time is effecting my ankle severly. Sometimes it 'attacks' my hip, shoulder, knee, toes, wrist, one finger in particular etc.

I also had the same problem w/ the grip on small tools. I buy a battery operated toothbrush simply for the benefit of the added girth. The rounded body of the toothbrush makes it much easier to hold. I get really fat pens and paint brushes (I'm an artist) for the same reason.

Good luck with the RA and Lupus tests. I need to get around to those one day as well.

[ohsotired]

I have exactly the same arthritic reactions in my hands and feet. It is just much worse when I get glutened and this time is effecting my ankle severly. Sometimes it 'attacks' my hip, shoulder, knee, toes, wrist, one finger in particular etc.

I also had the same problem w/ the grip on small tools. I buy a battery operated toothbrush simply for the benefit of the added girth. The rounded body of the toothbrush makes it much easier to hold. I get really fat pens and paint brushes (I'm an artist) for the same reason.

Good luck with the RA and Lupus tests. I need to get around to those one day as well.

I also have other places it seems to show up, but they aren't constant like my hands. My left wrist, alternating knees, my neck........

I do have an electric toothbrush, which seems to help, but some days I even have trouble holding on to that.

I'm pretty sure mine isn't specifically gluten related, although I have only been gluten-free for about 6 weeks and I have messed up a few times.

My doc said one possibility is that my body is still 'detoxing' - I had some pretty serious joint pain in my hips, knees & ankles about a week and a half in to the diet, which has since gone away. But due to some other issues I am having as well, she thought it a good idea to run the RA and Lupus tests. She's also doing a full thyroid panel.

Lisa16 - sorry for the hijack! I really hope you get your knee figured out quickly!

[1grnthmb]

By Reading through this it sounds a lot like problems I have. It all started in August of 1999 when I had my first major Asthma Attack. I was put on Asthma medicine and then on anti-biotics. Two days after going off the anti-biotics I woke with my left knee double in size. I spent three months being tested and probed for every thing in the books and the pain and swelling would not go away and they could not find what I had. Finally I was sent to a Rheumatologist. He sent me for some other tests, catscans and MRI's and discovered I had Sero-Negative Rheumatoid Arthritis. The regular RA panel is only 85% affective and I was one of those 15% that have it where it does not show up in the RA panel tests. I was also diagnosed with Ankylosing Spondylitis and degenerative joint disease. I was put on Sulindac (a prescription anti0inflamatory) and the swelling finally went away. The RA has since moved to my hands and they are painful and stiff all day long with no relief. I also am very stiff in all my joints when I wake up in the mornings and it goes away after I take a warm shower.

The Rheumatologist who diagnosed me told me that it is very common for people with Celiac Disease to have other auto-immune problems. I was the lucky one tho get not just one but two of them. I have never been able to associate any swelling and flare ups with an accidental intake of gluten. But I do notice an increased pain level after an exposure. that usually lasts about a week but has lasted up to a month.

I really recommend that you have your primary doctor refer you to a Rheumatologist and I hope that you can get a good one.

Mark

[Lisa16]

Thank you Mark! I will definitely ask him to look at those two things. He may have run one of the tests (for AS, maybe. There were some where I couldn't see what he ticked.) The blood work should be in by Wednesday, and I will be seeing an orthopedic guy that afternoon as well. I will check in. I hope the Monday bloodwork person checks in too.

My ankle is still swollen and it is more painful than a broken bone (I once broke my fibula-- this is not related to that BTW). We are going on over two weeks now and I just know it is an autoimmune-something-bad. I have never had swelling this long and this bad-- even from the broken bone. I don't know how to say it, except that it "feels" serious. In the same way when you have celiac you just know something terrible is wrong, even though they cannot find it nd try to tell you it is just a little D.

I am sorry for all of us. This type of thing interferes with life so much! I really hate it.

Hang in there everyone!

Lisa

[1grnthmb]

I know what you mean about it feeling worse then a broken bone. I have had several broken bones and none of them even came close to the pain of the swollen knee I had. And it took them three months to find out what they thought it was. I really feel that they never found out what I really had and made me so sick and eventually lead me to becoming disabled. The pain was very severe and I could hardly walk. All I could do was lie in bed. What was bad is that after seeing the doctor for three months she did not realize how bad my knee was until she saw me leaving. She then ran out and had me come back to the office and apologized for not realizing how bad the pain was. Doctors are so used to people who complain about small little things that they just assume you are in that category when you are taliking to them. Make sure to let your doctor know just how severe you feel the pain is.

Mark

[Lisa16]

Well, the blood tests all came back normal or negative. It is a relief but also puts me back in square one. I think the testing was not as extensive as I had hoped.

They ran lyme disease (2 tests, it looks like), D dimer, ANA cascade, TSH and RF.

They ordered an MRI. The orthopedic guy was not receptive to me seeing a Rheumatologist. He said he doubted it could be autoimmune and laughed at the sero-negative RH and AS questions I asked. He laughed when I said I was allergic to the sulfate in the glucosamine chondrotin.

Maybe if the MRI is negative the regular doctor will be more open minded.

Ankle is still doing its thing.

[mushroom]

Don't you just hate it when doctors laugh at you??? They act so darned superior and treat you like an idjit. And most of the time they are the ones who are way off base. And orthopedists are the worst

You can definitely be RF negative and still have a form of rheumatoid arthritis. I was initially diagnosed with polymyalgia rheumatica because of the pain, stiffness and swelling in my joints, then sero-negative rheumatoid arthritis, and finally psoriatic arthritis when the psoriasis came a-calling. I finally figured out for myself that it was a gluten related auto-immune response and went on the diet. And it IS gluten-related because I just got glutened and I couldn't bend my middle finger again because of the swelling, and couldn't even lift a coffee mug because of pain in my arm.

So stick to your guns and I hope your PCP is more receptive to your ideas. We do know our own bodies

[BelievinMiracles]

I noticed at first that the doctors thought I was just being crazy. I'd list of my symptoms and they would say that's not important or roll their eyes. They made me feel like I was making a deal out of nothing. They always told me that it could be anything, that these symptoms were pointless. Then I went to school and kept going to the doctor here and would have to repeat everything! It got to the point where symptoms were so much of a variety I didn't know what was normal and abnormal anymore. I mean I was so used to the abnormalities that they seemed normal to me now. But the doctors saw that I was constantly coming in, and it wasn't until then that they became helpful to me. They didn't know what they were doing but when I asked for a test to be done, they would do it. ha ha, even though they did it wrong, at least they were allowing me to somewhat take over, instead of the doctors thinking they knew everything.

[1grnthmb]

I think I was labeled as a hypochondriac and actually had a doctor tell me that all my problems were just in my head. So I can understand how you felt when the doctors thought you were crazy. But once I found doctors that actually listened to me and were willing to work with me it opened the eyes of the doctors who thought I was just making every thing up.

[*lee-lee*]

i've had severe joint pains in my hips for about 16 months now. i was tested last year numerous times for lymes, lupus, rheumatoid arthritis, mono, thyroid and probably others that i didn't know about. everything came back normal. i was sent to an ortho who ordered an MRI, which also came back normal. he finally diagnosed me with trocantaric bursitis and sent me for a month of physical therapy. it did nothing (except provide me with a hearty medical bill for procedures not covered by my insurance) and i returned to the ortho for a series of cortisone injections. they didn't really help so i gave up and learned to deal with the pain.

about a year after the hip pain began, i started exploring the possibility of celiac (because of GI issues, nothing to do with the hips). for a short time after going gluten free, my hip pain had dramatically decreased. but it always seems to come back with a vengeance. i don't currently have health insurance so i take Advil when i have flare-ups and pray it'll stop soon.

i used to think my joint pain was another symptom of celiac. but i've been very good about avoiding gluten (except accidental CC and such) so i can't figure out why i still hurt.

[Lisa16]

I had the MRI on Monday and I got a call yesterday saying there was a "significant finding" and I would need surgery. I will be seeing the same ortho guy this afternoon and he is supposed to explain and show me the films.

However, his intern or nurse (his sidekick, at any rate) also told me three different people had to look at the films and they could not agree on the interpretation. This worries me because I don't want to have another surgery for nothing. And what if it is autoimmune? Is there something they would do surgery for?

Ankle is still swollen-- swelling is low in the am, but balloons as the day progresses. It really hurts at night. It is definitely not getting better by itself.

I wonder what "significant finding" means?

[Lisa16]

MRI inconclusive, 3 drs disagree- weird result-- fatty tissue edema

The MRI was read by three different people and there is no consensus. They showed me the films. There is a small "loose body" (cartiledge or bone maybe) that is isolated and floating in a small sphere of fluid. But is is nowhere near the inflammation. You can see the inflammation in white on the image and it is in the fatty tissue on one side of the tendon, but well away from the "loose" body which is trapped in position. In other words, the white inflammation does not extend to the floating bit at all. The tendon is fine, there is no problem with the bones. He had never seen anything like this. The images were very intersting-- that is some great technology they have.

The ortho guy only gives the problem a 25% chance of being related to the "loose body" and says he cannot get it with the arthroscope. So autoimmune is looking more likely. They gave me steroids, which have helped (but the pharmacy accidentally gave me a doudle dose because they had to figure it out by hand since they only had prednisone in 1 gluten-free format and it required conversion). I am on day two and the swelling/pain is almost gone. He said if the steroid doesn't fix it, then he wants to open the ankle to get the "body" out. I asked him about a rhumatologist again. He didn't laugh this time, but it is the primary guy's call.

So does a 25% chance sound like good enough odds to go in to you? I don't like it.

And what are the potentials here? What autoimmunes are out there that would go after this type of tissue?

I think the ANA cascade they did rules out lupus. It is not infection, gout, lyme disease, the RF and CRP are normal. It is not a blood clot.

Thank you.

[Live2BWell]

I too get extremely sore joints when I eat gluten. Unfortunately, eating gluten sets off the autoimmune response, and since I am diagnosed with Hashimotos Thyroiditis and Fibromyalgia (and lastly, Celiac) I have to be really conscientous! I did want to mention that just because your ANA comes back negative, does not mean you don't have another autoimmune condition. My ANA came back negative, as did Rheumathoid Factor and my Lymes test, and they assumed nothing was wrong and I was a hypochondriac. Two years later, and a lot of doctors and unnecessary pain, I was diagnosed with a slew of autoimmune conditions - one most likely exhasperated by another (again, unnecessarily!)

Best of luck and keep us posted!

[ang1e0251]

My Mom & my sister both get attacks like you descibe. I'm celiac & all my pain has gone away. I think my sister has it too but she just goes and gets a steroid injection every few months & thinks that's OK. Sigh. I have no experience but I have read some people having success with taking pure aloe vera to ease arthritis pain. It wouldn't interfere with Celiac D. & might be worth a try. Hope your pain improves soon!

[Mtndog]

I'm not sure, seems like you are covering the basics. Be sure your lyme testing is through Igenex lab. They have a much better rate of detection. Many labs are as low as 40% accuracy.

Any changes in diet?

It's frustrating because celiac (and other autoimmune disorders like lupus and RA) share many same symptoms.

I just wanted to back up that to truly rule out the Lyme, you should have the Igenix testing. I sincerely hope that it turns out to be NONE of these and just a fluke!