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

Incredibly Painful Joints


Canadian Karen

Recommended Posts

Canadian Karen Community Regular

My joints flare up and are incredibly painful. Particularly my right thumb, wrist, elbow, hip and ankle - all on the right side.

I have previously had the bloodtest for rheumatoid arthritis and it came back negative. Now I know for certain it is some form of arthritis that I have (based on the kind of joint pain I endure) and someone on here mentioned it before and the description fit me so well...... I'll be darned if I can't find that name now, and I want to discuss it with my doctor when I go back to her.

Can anyone remember the name of this particular arthritis that I am talking about?

Thanks!

Karen


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



Celiac.com Sponsor (A8-M):



lonewolf Collaborator

I don't know what kind of arthritis it is, but just wanted to say how sorry I am that you're going through this. I had arthritis that hurt so bad - I wouldn't want anyone else to have that pain. (Mine was psoriatic arthritis - goes along with psoriasis but is the same as rheumatoid without the rheumatoid factor showing positive on the blood test.) Mine got better with a very strict diet of only rice, fish, sunflower seeds, some fruits and some vegetables. And I did a lot of the things in the book, "Restoring your Digestive Health". (Lots of pro-biotics, stuff to kill intestinal yeast, lots of Omega 3's...) Don't know if that would work for everyone though.

Nantzie Collaborator

I did a search to see if I could find a list on the types of arthritis and found a link for you --

Open Original Shared Link

They say that there are over 100 types of arthritis. This looks like a very thorough list with a lot of different links.

I hope you're feeling better soon. One of my symptoms is pain, so I can sympathize...

It just shows how jaded I've become with the celiac stuff when I wondered if a "negative" blood test for RA is anything like a "negative" blood test for celiac. :rolleyes:

Hey! I just was looking at this list on the about.com link and Celiac Disease is on there because RA is related to celiac. Sounds like this might be a pretty thorough resource, or at least a good starting point...

Gentle hugs to you,

Nancy

RiceGuy Collaborator

Well, I've been dealing with this exact sort of thing, and I believe I have only now discovered what the cause has been. The pains are going away now thank goodness, once I eliminated the nightshade foods!

Apparently, the poison in them is dangerous to everyone, but the levels are typically too low for most to notice! Here's a link to a description of nightshade foods and their effects:

Open Original Shared Link

I can't say if it has any relevance to your particular pain, but I figure it's worth considering anyway.

Rikki Tikki Explorer

Awww Karen :angry::angry::angry: You are in my thoughts

CarlaB Enthusiast

That hurts! I used to get it in my left side -- thumb and knee. I took msm, glucosamine and chondroitin (one pill has them all) and it helped tremendously.

I have also read that about the nightshades.

Nancym Enthusiast

Was it me perhaps? Ankylosing Spondylitis?

Women tend to experience it differently from men. We get more fibromyalgia symptoms and less fusing. For me it afflicts my joints (every one of them including... get this... my ribs), muscles and tendons. :\ Sometimes the muscles go into terrible spasms and I've had tendonitis in the jaw and the forearms.

Here's a web site you might find useful: kickas.org

It is much more difficult to diagnose in women because we often don't get the classical fusing.

I gotta say, all the supplements in the world don't really seem to help.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Karen, I am sorry you are having these problems now, as if you needed anything else to deal with!

Thanks, rice guy for posting the link, it explains a lot to me, and may be worth consideration by anybody with joint problems.

Karen, I used to get the exact same thing, I've had days where I couldn't walk or use my right hand/arm at all, due to joint pains and weakness in the very same joints, strangely also on the right side! Since I've cut out the lectins (and nightshades belong to those as well as to the salicylates, by the way), I don't usually get those problems now.

CarlaB Enthusiast

Funny both of you had right side and I had left. I am left-handed. I doubt it means anything, but just interesting.

mythreesuns Contributor
Funny both of you had right side and I had left. I am left-handed. I doubt it means anything, but just interesting.

Just to add to the confusion....I'm left-handed and although my "gout" is in my left big toe, most of the other pain is in my right side from my ankle to my fingers!

AndreaB Contributor

That was an interesting article about the nightshades.

Karen,

I only had minimal joint pain and don't know whether it was attributable to gluten and/or soy since I cut out both around the same time.

Canadian Karen Community Regular
Funny both of you had right side and I had left. I am left-handed. I doubt it means anything, but just interesting.

Canadians get in on the right side, the Americans on the left side! :lol:

Nancy, I do believe it was you! Thanks again for the name and I am going to research it more.....

That link about the nightshades was very interesting, but very troubling. If I had to give up potatoes, I would die! Basically, I live on potatoes and rice.

Also, thanks for the link to the arthritis forum. I joined and have asked a question there......

Hugs.

Karen

CarlaB Enthusiast
Canadians get in on the right side, the Americans on the left side! :lol:

I would die! Basically, I live on potatoes and rice.

:lol::lol::lol:

You wouldn't die ... you'd still have rice! <_<

queenofhearts Explorer
That link about the nightshades was very interesting, but very troubling. If I had to give up potatoes, I would die! Basically, I live on potatoes and rice.

Can you tolerate sweet potatoes? They're from a different family...

Nancym Enthusiast

Karen, I'm going to get myself on the Paleo diet. I've heard a lot of folks have had success with it in regards to arthritis. I don't know if I can give up my beloved chilis though. I'm quite addicted to Thai curry. :P

So far the best thing for me has been my medication. Not all drugs work for everyone but the Sulfasalazine seems to work for me fairly well. Some folks have to take stuff that suppresses the immune system. Not something I want to do!

lonewolf Collaborator
Can you tolerate sweet potatoes? They're from a different family...

Add sweet potatoes to the list of things I ate on my super-restricted diet when dealing with horrible arthritis. And, I do agree that eliminating all nightshades is a great idea.

RiceGuy Collaborator
Funny both of you had right side and I had left. I am left-handed. I doubt it means anything, but just interesting.

...And for me it traveled! First in my shoulders (or was it the neck?), then into one shoulder blade, slowly progressing over two weeks or so over to the other side, then some ribs, then into my mid-spinal region, then the ribs on the other side...It basically kept traveling like a snake until it got to my legs, the first of which was useless for a month, with several weeks on either side of the curve. Then just when I thought it was finally over...BAM! The other leg acts up - but this time nearly over night!

That link about the nightshades was very interesting, but very troubling. If I had to give up potatoes, I would die! Basically, I live on potatoes and rice.

Ditto! Only now I have given up the potatoes, along with tomatoes and peppers :( Yeah, it's not something I wanted at all, believe me. But when the pains reside, you'll acquire the willpower if you don't already have it. Fortunately, willpower isn't something I've had trouble finding. It's just not easy locating the culprits in the diet, especially when it just starts up one day even when you haven't changed anything :angry:

Sweetfudge Community Regular

Arthritis runs in my family. I think I'm still young enough to avoid it, although I do have achy knees, especially when I work out. I use this stuff though, and I love it. My mom who just developed arthritis uses it as well, and says it helps so much. Check out this link, and pm me if you're interested:

Open Original Shared Link

Here's the page with full ingredient list:

Open Original Shared Link

Hope you get to feeling better :)

ravenwoodglass Mentor

Add me to the list that got relief at last by eliminating nightshades. I cut them out totally for a while and now can have them as long as it is not more than a couple times a week. I went nuts on potatoes and tomato based stews after I was diagnosed celiac so I think it cropped up because of that. I have the most joint damage on my right side but eventually almost all my joints were effected. I was told it was osteoarthritis because I didn't show positive for the RA factor. Gluten free gave me a lot of relief but eliminating nightshades was the final peice of the puzzle for me.

Canadian Karen Community Regular
Add me to the list that got relief at last by eliminating nightshades. I cut them out totally for a while and now can have them as long as it is not more than a couple times a week. I went nuts on potatoes and tomato based stews after I was diagnosed celiac so I think it cropped up because of that. I have the most joint damage on my right side but eventually almost all my joints were effected. I was told it was osteoarthritis because I didn't show positive for the RA factor. Gluten free gave me a lot of relief but eliminating nightshades was the final peice of the puzzle for me.

Me too about the potatoes and tomato based, only for me it's soups. The thing that is really scary is that throughout my life, my one and only safe food whenever I was in so much pain and my insides felt so raw and irritated, was potatoes. No matter how bad it was, I could still eat potatoes without bringing on the pain. If I lose potatoes, I am in trouble..... I have honestly never tried sweet potatoes - will have to give it a go.....

queenofhearts Explorer

Sweet potatoes are incredibly nourishing-- they show up on lots of Superfood lists. And I find them extremely soothing. They are very easy to prepare, taste great in my opinion, & are cheap! And available year round!

What's not to like?

RiceGuy Collaborator

If you like potatoes in soups/stews, I'd suggest turnips as a substitute. I've had times when I couldn't barely tell the difference, as both are so close in texture and color when cooked that way.

I'm adding millet to my diet now. Apparently it's very easy to digest, and quite a nutritious grain. I'll find out soon enough how well I tolerate it...

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.