Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


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

Joint Pain


Lgood22573

Recommended Posts

YoloGx Rookie

Hi, Bea!

For ease of reference: Would you mind indulging an attention-challenged, brain-fogged "old lady" and list every supplement you speak of here, with the brand name next to it?

ABC Multi - Funforyou Labs

DEF Calcium - Horsepills, Inc.

Oh, that would be so very much appreciated. Please feel free to add any additional supplements you use that may not have been mentioned here. THANK YOU MY FRIEND!

I'll do it a little later when I have time. Fraid I don't know what ADA means though...

Bea


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Skout Organic
Little Northern Bakehouse



Celiac.com Sponsor (A8-M):
Skout Organic


Lynayah Enthusiast

I'll do it a little later when I have time. Fraid I don't know what ADA means though...

Bea

Thanks, Bea.

dilettantesteph Collaborator

I also suffer from joint pain. Before diagnosis my knuckles were swollen to about twice their normal size. I had to stop wearing rings. I had gone up a finger, and then I couldn't even do that. Getting them off was painful. Also hips, knees, ankles, shoulders, you name it. Walking was painful. I'm a woodwind player and it really slowed down my fingering and made it sloppy. Now things are back to normal and I'm playing a lot better and wearing rings again. I'm also running, biking, etc. When glutened it can get bad again. I can get aches all over like the flu. I'm glad that now that it's been almost 3 years since diagnosis, I've got this diet figured out much better and I don't gluten myself as much.

For me it took a few months initially for the joint pain to go away.

Black Sheep Apprentice

I also suffer from joint pain. Before diagnosis my knuckles were swollen to about twice their normal size. I had to stop wearing rings. I had gone up a finger, and then I couldn't even do that. Getting them off was painful. Also hips, knees, ankles, shoulders, you name it. Walking was painful. I'm a woodwind player and it really slowed down my fingering and made it sloppy. Now things are back to normal and I'm playing a lot better and wearing rings again. I'm also running, biking, etc. When glutened it can get bad again. I can get aches all over like the flu. I'm glad that now that it's been almost 3 years since diagnosis, I've got this diet figured out much better and I don't gluten myself as much.

For me it took a few months initially for the joint pain to go away.

Do you mean that the swelling and pain went away due to going g.f., or were you also taking silica?

Please forgive me if you mentioned that earlier in

the thread and I missed it! :P

dilettantesteph Collaborator

My joint pain went away from going gluten-free. It took a few months. I didn't take any silica.

rnbwdiva Newbie

Does anyone else suffer with joint pain from being glutoned? I don't know which of my symptoms is worse... The GI symptoms, or the pain in my joints.

Absolutely! I was at the point where I had a lot of difficulty walking and was being treated for arthritis when I switched doctors out of frustration (they wanted to medicate me like crazy) and found a rheumatologist who said he didn't think I had arthritis at all... he found my many deficiencies and, one long and frustrating year later, I realized that almost all of the pain was my body swelling from the gluten.

I am trying Vit D and fish oil for the swelling, but still have many rough days. Humid, cloudy days are the worst....

Good luck!

Black Sheep Apprentice

Humid, cloudy days are the worst....

Yes, aren't they special? :rolleyes: And I am in the Great NW, where it's cool, cloudy, and humid, about 300 days out of the year. :blink:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
GliadinX
Food for Life



Celiac.com Sponsor (A8-M):
Skout Organic


NE Mom Apprentice

joint pain was one of my main symptoms. In fact, I was actually dx'd with Fibromylagia before discovering that gluten was actually the problem. I have also removed dairy from my diet and have noticed that any "accidental" dairy ingestion actually causes the joint pain to flare up again. You also may be suffering from other food intolerances.

  • 2 months later...
SherBear Newbie

joint pain was one of my main symptoms. In fact, I was actually dx'd with Fibromylagia before discovering that gluten was actually the problem. I have also removed dairy from my diet and have noticed that any "accidental" dairy ingestion actually causes the joint pain to flare up again. You also may be suffering from other food intolerances.

I have very bad joint pain, elbow, thumb, wrists, back heels. I found by avoiding starch, it lessens the pain. I thought it was goofy at first but in a few days to week i felt reflief. To know if the food you are eating is a starch you just add iodine to and it turns from amber to black ot dark brrwon. Make sure you never eat the test piece, because iodine is poisonous. no or low starch diets do work for relieving joint pain.

  • 2 weeks later...
Chakra2 Contributor

I'm 33 and it was my joint pain that finally got me worried enough to see a doctor. I thought for sure I had RA-- I couldn't believe how many of my joints were hurting, even toes and fingers. I think I have had celiac or gluten intolerance all my life (lots of GI issues startng in infancy ) but have only recently found out about it. My knees and hips started to hurt as a 13-14 year old and I was told that was just because a was a girl playing sports. I have always liked to stay active so I just exercised through the pain for the past 20 yrs. Maybe not the best plan but docs kept telling me hurting was inevitable if I kept running. Um, NOT TRUE!!!!! My joints are pain free for weeks at a time if I avoid gluten, dairy, corn, soy and nightshades. The nightshades has actually been the biggest bummer but it helps a lot to not eat those foods. I was mildly glutened today and within 2-3 hours my joints were really sore. It's great to know what causes it now, though, and to know that it will pass in a day or so. Now I know I can take it easy on the days I feel pain and be back to feeling good soon. Before sinc everyone told me the pain was inevitable I just pushed through. Grrrrrrrrr ... doctors. :( I even had knee surgery -- pointless. Changing my diet fixed my knee in days. The surgery did zip. Now I want to shout from the mountaintop about trying dietary changes for joint pain before resigning yourself to less activity or having surgery. Happy bending to all!

GFinDC Veteran

My joint pain is mostly gone now that I got off soy. It took a quite while off soy for the pain to go away, but it is much better now.

bluebonnet Explorer

joint pain seems to be sticking around for me because of unfortunate cc during vacation and working at summer camp. i washed my jeep and the next day i felt so incredibly bruised in my shoulder blade near my spine as well as my sternum that i thought it was maybe a heart attack. along with horrible knee and hip pain. its very scary to feel that bad. just that tinest bit of gluten caused so much havoc. i thought everything was prepared so carefully too. found out the hard way that wasn't the case. the joint pain seems to be the hardest to heal.

  • 2 weeks later...
dreacakes Rookie

I have joint and tendon pain too.

I actually was treated for a severe flare-up of tendinitis and bursitis while I was working in a coffee shop a few years ago. My condition puzzled all of the doctors because the tendinitis wasn't localized- it was completely through both of my arms, finger tips to shoulders. It was also weird because my joints and tendons never swell, but still feel inflamed. Doctors couldn't do anything to help, so they declared me "permanent and stationary".

Since then I still have arm pain every day, and the "tendinitis" has flared up in different parts of my body as well.

I only went gluten free a few months ago, so my body is still recovering. One of the trigers for me trying a gluten-free diet was because my back was spasming so badly I could barely sit-up in my college classes. And since then it has gotten way better.

I'm also sensitive to corn and nightshades. I'm actually on the couch recovering right now because I've been (stupidly) eating too many wonderful gluten-free goodies that contain potato starch. :( (I love when I get off the couch and my hips and knees are so stiff I hobble around the house like I'm 90!) Why can't they make them with tapioca starch or something!!

GFinDC Veteran

I have joint and tendon pain too.

I actually was treated for a severe flare-up of tendinitis and bursitis while I was working in a coffee shop a few years ago. My condition puzzled all of the doctors because the tendinitis wasn't localized- it was completely through both of my arms, finger tips to shoulders. It was also weird because my joints and tendons never swell, but still feel inflamed. Doctors couldn't do anything to help, so they declared me "permanent and stationary".

Since then I still have arm pain every day, and the "tendinitis" has flared up in different parts of my body as well.

I only went gluten free a few months ago, so my body is still recovering. One of the triggers for me trying a gluten-free diet was because my back was spasming so badly I could barely sit-up in my college classes. And since then it has gotten way better.

I'm also sensitive to corn and nightshades. I'm actually on the couch recovering right now because I've been (stupidly) eating too many wonderful gluten-free goodies that contain potato starch. :( (I love when I get off the couch and my hips and knees are so stiff I hobble around the house like I'm 90!) Why can't they make them with tapioca starch or something!!

Yeah I hear you on the potato starch thing. I guess it's just so much cheaper for potato starch and that is why it gets used a lot. I can eat corn, so I don't check for that. But I can't do soy or dairy or nightshades. Anyway, Glutino has some breads that are potato and dairy and soy free. Kinickkinick hamburger buns are ok too, but their English Muffins have potato. Food for Life brown rice wraps are tater, dairy and soy free too. Check all of those for corn though cause I never look for that as a problem.

I was just looking at these Food for Life bars on Gluten free Mall and they seem like they might work too. They are on sale too. I haven't tried them myself though.

Open Original Shared Link

Darn210 Enthusiast

Just wondering if any of you were tested for RA or Lupus . . . or did anyone have a positive ANA test but follow-up/more specific testing for RA/Lupus didn't result in a RA or Lupus diagnosis?

mushroom Proficient

I was sero-negative for RA, but then psoriatic arthritis most often is sero-negative and the psoriasis showed up later. And the disease did not respond to lack of gluten or nightshades, unfortunately, although it's only been a year since I've been totally free of nightshades (forgot about that darned potato starch). I am afraid to stop the Humira I take for it because I was so miserable with it and it is totally resolved now (except for residual fat fingers and toes :P and a bit of joint damage )

  • 1 year later...
Charli61 Apprentice

This forum has been fascinating for me to read. I have miserable pain in my hands and wrists particularly. Sometimes in my ankles and feet....also back and neck. I was tested for RA and that came back negative. The 'arthritis I don't have hurts a lot' is kind of my thinking. I have only been celiac diagnosed for a couple of months now. So, I haven't seen a huge change in my wrists/hands (I spent 26 years doing percussive therapy on my daughter who has Cystic Fibrosis, so figured hands/wrist pain was kind of a RSI) BUT I have been eating dairy the last couple of weeks. (since I started having lactaid tablets for it) I am just figuring out maybe the dairy is not helping. Also I see people relating their pain to soy (oh my gosh, I am vegetarian and would really miss soy) and also nightshades (will have to google to see what those consist of) I will cut out the dairy :( and see if that helps. If not then I will try cutting out soy and see if that does it. I really thought that I was doomed to just 'hurt' But maybe there is hope yet! I will post again if I find something that helps this. But I did want to thank you all........My doctor did NOT suggest that the pain could possibly be related to the Celiac disease. Please know, all of you, your posts are most helpful!

mushroom Proficient

My doctor did NOT suggest that the pain could possibly be related to the Celiac disease. Please know, all of you, your posts are most helpful!

I have two rheumies, one in New Zealand and one in Nevada. The one in New Zealand (my second after I gave up on my first as a fuddy duddy) when I told her my suspicions, said "Oh well, it's too late to test you now.". (too long gluten free) The one in Nevada refused to believe there was any connection between RA and celiac, said he had never had a diagnosed celiac as a patient. I asked him how many he had tested :blink: Obvious answer, none! I am seronegative for RA - most people with psoriatic arthritis are. My psoriasis arrived after the RA.

My pain started in my neck, shoulders, wrists, hands, and in the metatarsals of my feet. I was lactose intolerant (not dairy, just the milk sugar component of dairy which we have trouble digesting if we have damaged the villi in our small intestine) for several years before self-diagnosis. I can now tolerate alll dairy again. I mostly eliminated nightshades because they are known to be inflammatory for people with arthritis - tomatoes, potatoes, peppers, eggplant - and then found when I tried to eat them in any amount I had problems. Soy is a biggie for me although I can now tolerate some soy lecitihin, as in chocolate :D And I can tolerate small amounts of potato starch again after years of avoidance. So I think it is possible to heal your gut and regain some of the foods that you hav to eliminate. But I am still avoiding legumes and citrus because those came later and I have to wait a big longer. :)

AVR1962 Collaborator

Last night got so bad, I thought I was going to end up going to the hospital. Today I'm back to normal. I VOW to be more diligent in reading labels!

Sorry to hear this. I too get bone pain when I get glutened. Does yours pass? Or does it come back without being glutened? Lack of vit D or inflammations can cause the pain as well. I have had a terrible time with my back and shooting pain down my left leg (scyatic nerve pain), stiff neck. I found a herbal anti-inflammatory tht seems to be helping quite a bit.

domesticactivist Collaborator

Just wondering if any of you were tested for RA or Lupus . . . or did anyone have a positive ANA test but follow-up/more specific testing for RA/Lupus didn't result in a RA or Lupus diagnosis?

My son got tested for septic hip, Lupus, blood screening for leukemia, and all those were negative. He ended up with a tentative diagnosis of either septic hip or a reactive rhumatoid arthritis to pneumonia. The drs did no take into account his past, persistent joint and bone pain, either.

We have found that removing gluten removed all those symptoms, introducing it brings them back.

skyloft Newbie

Lots of joint pain in my elbows which went away after 3 days on the diet. I feel 10 years younger.

Archived

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


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      128,863
    • Most Online (within 30 mins)
      7,748

    Hb33
    Newest Member
    Hb33
    Joined

  • Celiac.com Sponsor (A20):
    Smith & Truslow


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Food for Life



  • Upcoming Events

  • Posts

    • Scott Adams
      Most likely cross-contamination I believe.
    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
    • trents
      Welcome to the forum, @jnstefan! She should start feeling better within a week or two if she is truly avoiding gluten and if she isn't also showing intolerance to other foods. It is quite common for celiacs to be dairy intolerant (not just the lactose but the protein casein in dairy) and to oats (protein is avenin). Casein and avenin have structures similar to gluten. We call this cross reactivity (not to be confused with cross contamination). So, you might look at pulling these two food items from her diet to see if there is improvement. But achieving a gluten free state is more challenging than people realize when the first start in. It is hidden in so many foods you would never expect to find it in like soy sauce and canned tomato soup, just to site two examples. This might help:  
    • jnstefan
      My 10 year old daughter was diagnosed with Celiac 2 weeks ago. We've been on gluten free diet now for 2 weeks. She still experiences abdominal pain at times , and is struggling with fatigue. What is everyone's experience with how long it takes for the body to heal and stabilize after starting the gluten free diet? Thanks for any feedback!
×
×
  • Create New...