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Joint Pain, Hot Flashes
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Now I am getting joint pain (knees, hips), leg cramps at night and I feel very hot all the time. I am pretty sure I am gluten free and casein free right now. Is this a normal "withdrawl" symptom? My diarrhea has, for the most part, gone away. So has the brain fog and vertigo but I still have those little red petechiae on my legs. (The doctor looked at them and said "hum", that was it). I don't like the gi I was seeing and am looking for a new one. Anyway, I guess I am going to call my gyn (I trust her the most right now) but I did not know if it is a common symptom.

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I too have been wondering about withdrawal symptoms. I have been gluten-free since March 2004, (except two accidents which took about 10 days each to resolve). I still have hip pain over the night and early morning, but not nearly as bad as when I was eating wheat. The diarrhea has resolved (except for the two accidents), a couple of days ago I noticed some vertigo while I was sitting, but it went away after I stood up, and I still have the nickle sized red spots on my thighs and stomach which sometimes itch. Comments regarding others withdrawal symptoms would be very helpful.

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I had joint pain in my knees and hips before my diagnosis in March 2004 and up to about 2.5 months after being gluten free. I haven't had anymore knee/hip pain in the last month or so. I guess it takes awhile for the body to heal.

-Carrie

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Hi Janine,

Since going gluten-free I have developed pain in the inner aspects of

both knees and the top of my feet. When I had an accident , after trying

oatmeal , I swear the pain went from the right abdomen, down my right

thigh, and into my right knee. It happened simultaneously like an

irritated nerve, something like sciatic nerve. It only lasted that one night

but I almost daily have knee and feet pain...weird symptoms?

I haven't told my doctor, I don't think he can do anything, I just have to work

at getting those antibodies down.

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Keep an eye out for Fibromyalgia with Celiac, an autoimmune condition which acts much like Chronic Fatigue Syndrome. But Fibromyalgia involves pain, as well. My mother was recently diagnosed with Spinal Stenosis, and I do know that she has several of the conditions you mention. She goes in for surgery soon, and the recovery rate from the pain is excellent.

If you experiencing severe face flushing with sweating, I would recommend being tested for Carcinoid (5-Hiaa lab test), a very, very rare form of treatable cancer you may want to rule out.

If you're 40 years old or older, obviously the female hormones should be checked out to rule out menopause.

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I just spent some considerable time posting about a disease that accompanies celiac sometimes known as sjogrens syndrome. No, I do not believe you have cancer....I believe it could be sjogrens. I am posting all over this place trying to get those who sound like me to listen. Over a year ago I was diagnosed with celiac. After being gluten-free for almost 8 months, i started getting sores on my lower lip and my tongue would feel weird. I thought that I had to be getting gluten from somewhere. I started reading this forum some time ago and noticed along the way people who sounded like me. I then got my antibody results back and while some went down, others spiked. I am a 39 year old female by the way. I just seemed to ache, esp in my hips, a little in my elbows, and then, it seemed like overnight, my thumbs began to lock on me and hurt so bad. I am a mom and have no time for pain, so I went to see a rhum in my home town who just told me that I needed to take extra tylenol for the pain, even with gastritis and duodenitis (also, these 2 things are common in sjogrens). I finally went to the cleveland clinic and was diagnosed with sjogrens. yes, I still have celiac disease, its just that this autoimmune disorder can come commonly with the other. Now that I look back and think about the jaw pain that I had, red tired eyes, stuffy nose, and ohhhhh those horrible aching joints, it all comes together. I take palquenil, an immunosuppressor and boy, the joint pain has really subsided. there were nights that it would hurt to turn over in bed and I'm only 39. I hope this helps. Just please, get a good doctor.

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:o hi natalieb---i am sitting here thinking--WOW--this sounds like me--not all the time, is that possible---when i first went gluten free there were nights that my hip pain would invade my dreams--whatever i was dreaming would include the hip pain and i would be crying in my dreams, then i would wake up and be in tears because of the pain--i have the aching joints and only what i can call unexplainable aches--like little irratating shooting pains in elbows or knees--i fell over my son's black lab and had a terrbile time getting that knee to heal, a year later it became very swelled, with terrbile fever in it--the dr only said it was an infection and gave me an antibiotic that took over a week to work--it was the most painful thing i have ever been through--i cried from the pain--that was 1 yr ago and my 5 yr old grandson will still touch that knee (it is still discolored) and ask, "grandma, is there still fire in this knee"--i also have the itchy eyes and stuffy nose--all i can say is WOW--i just keep thinking it has to be an allergy to something--doesnt happen all the time--is that possible--can you let me know if i sound like you--thanks :)
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Hi Deb,

I'm glad you wrote back. If there is anyone in this forum that I can help thru my exp. then I am glad. When I look back now after being diag. 3 months ago with sjogrens, it all fits. About 6 years ago, even before my celiac diagnosis, I would sit in my office and feel like I was flushed. sometimes, my cheeks appeared flushed and sometimes not. i would feel flu-like. i also exp what i thought to be bad vision, despite my perfect eyesight as things would sometimes go blurry and then it would go back to normal for a day,days, or months. I always ached, and to be quite honest, with that history, my gp thought that i was depressed, well, far from it. after my celiac disease diag, i started to get those mouth sores and then the bad thumbs. the time that i was the most scared was when i tried to push myself up with my wrists from washing the floor and i felt like they broke. during that time, i also had incredible jaw pain, (which now i know is where your paratoid gland is, that is involved with your salivary gland). as a reslut of sjogrens, i have rhum. arth. I was fortunate to have the good insurance to go to cleveland clinic. if I had not gone there, the rhum. here in pgh, were still guessing and giving me vioxx and telling me to take extra tylenol. also deb, when things got really bad I would notice that my eyes would get horrible if i were out in the sun or swimming. i thought it was normal for them to look blood red and burn after swimming. please be careful if you go to a rhum. regarding this as, i had a blood test called an ssa and ssb which is to test for sjogrens, both came back negative as well as a lip biopsy. however, my wonderful doc at cleveland said that you do not have to have every single symtom on a list in order to have sjogrens or many other diseases out there. I hope sharing some of this helps. if you have any specific ques. feel free to ask. i know that not everyone in this forum also has sjogrens, but it is another weird autoimmune disease. one would never think that if it is thesalivary gland then how can you have severe joint pain and weakness as well as tingling in legs, etc. by the way, that medicine has really helped suppress my immune system and i feel at least 8 years younger, I wouldn't say 10 however. lol. hope this helps. natalie :)

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tingling--thats a good word for what i meant by that funny kind of ache--sometimes it will be an elbow, or maybe a shoulder, maybe a leg--many times i get this feeling like cramping behind my knee--the left knee is the one i hurt falling over the dog--this spring i hurt the right knee just by squatting down to get something off a bottom shelf at work--now i cant trust either knee--somedays they both have fathom aches, some days just one does--they both swell and some nights are watch the clock nights cause i dont care what i do, i cant get comfy--does any of this sound familiar, or am i grabbing at straws--i never connected the joint aches with celiacs--my panic attacks i did cause i know they are chemical imbalances--somedays you just want to scream--WHY ME! ;)

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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