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
Canadian Karen
Posted

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
lonewolf
Posted

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
Nantzie
Posted

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
RiceGuy
Posted

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
Rikki Tikki
Posted

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

CarlaB Enthusiast
CarlaB
Posted

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
Nancym
Posted

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
Ursa Major
Posted

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
CarlaB
Posted

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
mythreesuns
Posted
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
AndreaB
Posted

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
Canadian Karen
Posted
  • Author
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
CarlaB
Posted
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
queenofhearts
Posted
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
Nancym
Posted

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
lonewolf
Posted
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
RiceGuy
Posted
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
Sweetfudge
Posted

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
ravenwoodglass
Posted

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
Canadian Karen
Posted
  • Author
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
queenofhearts
Posted

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
RiceGuy
Posted

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.

Go to topic listing

  • 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. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    4. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    5. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    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

    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • 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.