Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Arthritis Flare-Ups


nvsmom

Recommended Posts

nvsmom Community Regular

I had arthralgias for about 15 years when I was an undiagnosed celiac. It was caused by celiac disease.  It would begin with fatigue, flu-like symptoms, mouth sores, and then my hands, wrists, shoulders and elbows (all symmetrical) would get very sore to move, and weak.  Holding books hurt, brushing teeth was tricky, and getting my arm up to blow dry my hair was a problem.  It would last for a few weeks or months and then be gone. Poof!  It never left behind pain. Ever.  The worst I had was regaining my range of motion and strength after favoring it for weeks.  The joint was never left with damage

 

The arthritis I've had lately is not like that.  It leaves behind pain that doesn't go.  It's osetoarthritis but I want to know is this is how it usually goes with OA.  I'm only 41 with multiple AI problems so I want to hear from you all if this sounds about normal since I don't trust doctors much anymore.  LOL I want to make sure this is OA and not another AI issue.

 

I've complained about my hips to you all before.  About 2 years ago they stared to suddenly lock up and crack with a lot of pain.  It would hurt to get them going after sitting and rest, and when I moved wrong the shooting pain would sap the strength out of my legs and I would stumble.  It started out quite bad and then got a bit better when I went on corticosteroids for another issue.  I assumed it was getting better but when I stopped the steroids a year later it came roaring back.  I eventually got myself to the doctor and got x-rays done.  It is (mild) osteoarthritis with a normal spacing but the bone growths/spurs are there.

 

The hip pain will come and go somewhat. Every time it departs my hips are a bit worse.  I never seem to get back to where I was.  And now my knees have started up too....

 

I've never had great knees.  I blew the right one in my teens and had it reconstructed.  They've both been making griinding sounds since my 20's but they didn't hurt unless I did too much like run 20km or go up and down a mountain in a day; then they would swell for a day, ache and be a bit hot.  They got slowly a bit more symptomatic over time so they would swell after a 5 km run instead of 20km. I could still play some basketball and soccer, or go for a jog (when my hips were up to it).  

 

It changed dramatically just over a month ago.

 

I was gardening for a day - nothing too strenuous.  A few days later I was kneeling for an hour to help my son's with some history projects (which they won in the city - gotta slip in some bragging).  No biggie.  The next day (or 2-3 days later - can't quite remember) my knees were swollen and stiff.  A day or so later they became quite painful. Both of them.  They hurt to rest or to move after rest.  The pain would radiate up and down my leg on the outside, and it hurt on the inside when I lay on one side.  They've stayed swollen for a good month. although not always hot.

 

Then my left knee (the uninjured one) became worse after a few weeks.  It feels as though there are loose pieces floating in it and getting in the joint.  A lot of pain in the back of the knee and the outer side.  Ow.  It was very bad for about 2 weeks. The type of pain where you can't sit still with it, or it keeps you up at night, and I can usually sleep through migraines and labor. LOL If I moved the wrong way it would take my breath away and I could feel my blood pressure drop.  Super annoying and inconvenient because I was coaching two sports at the time.

 

The extreme pain has been subsiding for a week now but my knee feels MUCH worse than it used to.  It cracks and locks, and it feels like there is stuff floating in the joint.  Plus it is still a bit swollen - not usually noticeably so but it can be felt.  I had an x-ray done but haven't heard back yet.

 

So... is this normal arthritis?  Is this how knee arthritis, or hip arthritis, usually presents?  The arthralgias I had from celiac disease were so different from what I have now, and I have to admit that I'm worried about how fast this recent stuff is progressing.  Does it go from nothing to affecting walking, and getting up or down, so quickly?  All within months, or a year or so? I'd love to hear others' experiences - just rying to figure out where I stand in this.

 

Thanks all. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



icelandgirl Proficient

Gosh Nicole...I'm sorry. (((Hugs)))

I don't have any answers for you. Just wanted to say that you are not alone in having ongoing struggles. I hate going to Dr's as well. But I wonder to myself...is this celiac related, Hashis related or is there something ELSE wrong with me? Urgh!

Hang in there...I hope you get some answers. (((Hugs)))

nvsmom Community Regular

Gosh Nicole...I'm sorry. (((Hugs)))

I don't have any answers for you. Just wanted to say that you are not alone in having ongoing struggles. I hate going to Dr's as well. But I wonder to myself...is this celiac related, Hashis related or is there something ELSE wrong with me? Urgh!

Hang in there...I hope you get some answers. (((Hugs)))

 

Thanks.  :)  You're a sweetheart.

 

I wish I knew if it was AI linked too.  My hip looks like OA but it's odd how it came on so fast, or I'm much wimpier than I thought I was... I don't think so though.  

 

It could be Hashi's doing it, but I've never had spikes in my TPO Ab or big flares of thyroid changes.  It just seemed to slowly stop working.   :rolleyes:   I sort of doubt it is Hashi's but who knows.

 

I suppose it could be a left over problem from celiac disease, one of those things that won't improve, but I don't really believe that.  My hip problems started after I had been gluten-free for about 6 or 9 months.  This knee thing popped up after being gluten-free for 3 years so a celiac cause is becoming less likely as time goes by.

 

Hopefully I injured them both, at the same time and without noticing it  :huh:, and my knees will get back to where it was - very mild OA without a lot of pain yet.

cyclinglady Grand Master

I can not recall, but has RA been ruled out? You seem so young for OA!

bartfull Rising Star

I'm so sorry to hear this. :( You really are to young for osteo. I'm wondering if it's Lyme or maybe one of theother tick-borne diseases. Maybe you should see a doctor?

nvsmom Community Regular

I can not recall, but has RA been ruled out? You seem so young for OA!

 

They checked me pretty thoroughly for RA and lupus about 2 years ago.  Everything was nice and negative, even my ANA.

 

I think I'm too young for OA too!  LOL ;)

 

 

I'm so sorry to hear this. :( You really are to young for osteo. I'm wondering if it's Lyme or maybe one of theother tick-borne diseases. Maybe you should see a doctor?

 

I saw a doctor about my hips and it definitely was OA.  

 

I saw a doctor about a week ago.  I am getting some blood tests done, and had an X-ray for my knees.  The doctor already called me about coming in over the Xray results so I know they found something - my guess is OA since they did the same thing with my hips.  I haven't gone in yet because my blood tests aren't done.  

 

My husband commented that my knees must really be bothering me if I actually made a doctor appointment.  LOL

 

I never thought of Lyme disease.  There aren't many ticks around here that carry Lyme disease. We get the Rocky Mountain ticks but usually not the other ones (black-legged ticks?).

GF Lover Rising Star

I hope you get some good options at the Doc appointment.  Sometimes I wish there was a Parts Department for Humans.  Just fill out a requisition and pop in a new knee or what have you.   :D

 

Colleen


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



beth01 Enthusiast

Hugs to you Nicole, arthritis is a b%$@#.  I have it pretty bad in my spine and my hips and knees have been getting progressively worse the last few years.  I hope they get it all figured out for you and can get you on something so you're not in so much pain!

 

Colleen, I think we all need gene therapy to go along with the parts department, something to get rid of all these nasty genes we have.

GF Lover Rising Star

Oh gosh, Beth.  I hear ya!  I saw this article the other day and it was about the first Head Transplant to be attempted in around 2 years from now.  A man has volunteered to do it.  He has a destructive disease that is destroying his body.  Guys got some guts!  At any rate, Options like that start to look attractive as more stuff happens to us....lol.

 

Colleen

nvsmom Community Regular

I know!  We joke about the full body transplant quite frequently.  I would love to trade this body in for a younger model... about 30 lbs lighter.

GF Lover Rising Star

Reminds me of how I would pop barbie's heads off and try to change it up.  I think tape came into play.

 

When do you see the Doc next Nicole?

 

Colleen

nvsmom Community Regular

Do you think duct tape would do the trick?

 

I haven't made an appointment yet.  Probably in about a week or so.

GF Lover Rising Star

A LOT of duct tape.  :P

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    2. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

    5. - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748

    SinnamonToasty
    Newest Member
    SinnamonToasty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.