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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

For Celiacs With Joint Pain
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17 posts in this topic

Do you have swelling? I have had joint pain for almost two years now, but I've never had any swelling. My joint pain is severe at times and although they get warm, they never swell.

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While I DO have arthritis in my spine, the joint pain in my fingers and shoulders and knees and hips was caused by nightshades. I was intolerant to potatoes for a long time (psoriasis flares), so when I finally got them back I went on a potato binge. After a couple of weeks the joint pain came on strong, and remembering that folks here have said that nightshades could cause that pain, I gave them up and within a couple of days the pain was gone.

 

I've been eating a few potato chips lately and so far so good. Nightshades are cumulative. If I go easy and take breaks of a few days, it looks like I can eat them without pain.

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While I DO have arthritis in my spine, the joint pain in my fingers and shoulders and knees and hips was caused by nightshades. I was intolerant to potatoes for a long time (psoriasis flares), so when I finally got them back I went on a potato binge. After a couple of weeks the joint pain came on strong, and remembering that folks here have said that nightshades could cause that pain, I gave them up and within a couple of days the pain was gone.

 

I've been eating a few potato chips lately and so far so good. Nightshades are cumulative. If I go easy and take breaks of a few days, it looks like I can eat them without pain.

 

So you do not have swelling with the pain?

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Nope. No swelling, just pain and stiffness.

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Nope. No swelling, just pain and stiffness.

 

Thanks.

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I have had severe joint pain over the years but I have never had swelling with it.

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I have had horrendous joint pain for years. During my gluten challenge I swelled up so much all over, I couldn't even wear my wedding rings! I'm improving a bit now that I have been gluten free.

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The first time I experienced a joint pain flare-up I had swelling, heat and redness. It scared me to death. i went from normal to not being able to use scissors within a week. I remember the relief when it finally passed a month later...

 

Ever since then, I do not get swelling or redness, and if I do it's very very minor. The pain is often the same and usually symmetrical on both sides of my body. Fingers, hands, shoulders, hips and elbows are usually the parts affected.

 

Frequency of attacks has lessened since going gluten-free. I had my last big attack from 3-6 months gluten-free, and I seem to be finishing a mild attack now - I'm taking hydrocortisol now so perhaps that lessened the intensity? No swelling at allthis past time, nor the last 3 month attack (from what I remember).

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I believe I just told you this in a PM exchange, but I will restate it here for other readers who may have the same question:

 

I do not have red swollen joints like in RA.  I have OA and osteoarthtiris does not cause red swelling in joints like RA does, but my knees are pretty big and my hands have obvious knobs on them (much to my dismay) .

 

Inflammation does not have to be "obvious". We all have inflammation but we may not "swell up"

 

There are tests that indicate a level of inflammation in the body--Sed Rate, C-reactive protein, for example. .

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I had some terrible joint pain. Occasionally, I still do. I found that regular yoga helped sooooooo much.

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I believe I just told you this in a PM exchange, but I will restate it here for other readers who may have the same question:

 

I do not have red swollen joints like in RA.  I have OA and osteoarthtiris does not cause red swelling in joints like RA does, but my knees are pretty big and my hands have obvious knobs on them (much to my dismay) .

 

Inflammation does not have to be "obvious". We all have inflammation but we may not "swell up"

 

There are tests that indicate a level of inflammation in the body--Sed Rate, C-reactive protein, for example. .

 

Yeah Irish, I started this thread before I pm'd you. ;)

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I had some terrible joint pain. Occasionally, I still do. I found that regular yoga helped sooooooo much.

 

This so good to hear. I just purchased a beginners yoga video and want to see if it helps. 

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I had awful SI joint paint for twenty years, with no swelling. My skin in the area felt hot to the touch. I had six cortisone shots over several years, and also tried physical therapy and yoga, and those things hardly helped at all. The worst pain seemed to correspond to when the lymph nodes in my groin were swollen (which happened often for unknown reasons). My CRP and Sed Rate were normal, but my monocytes were moderately elevated most of the time (also for unknown reasons). I do not have a celiac diagnosis but had dozens of symptoms for decades, and after six months gluten free the joint pain is much better, though not gone completely.

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I had some terrible joint pain. Occasionally, I still do. I found that regular yoga helped sooooooo much.

 

I agree.

Yoga, walking, weight-bearing exercise of any kind, lifting weights, swimming, riding a bike....any kind of movement...these all effectively keep the horrible pain I once had down  to "non-screaming level".  :D I also highly recommend massage. The muscles around those joints are all tighter than heck and have trigger points in them (hyper-irritable knots) and need to be worked out.

 

 

I had awful SI joint paint for twenty years, with no swelling. My skin in the area felt hot to the touch. I had six cortisone shots over several years, and also tried physical therapy and yoga, and those things hardly helped at all. The worst pain seemed to correspond to when the lymph nodes in my groin were swollen (which happened often for unknown reasons). My CRP and Sed Rate were normal, but my monocytes were moderately elevated most of the time (also for unknown reasons). I do not have a celiac diagnosis but had dozens of symptoms for decades, and after six months gluten free the joint pain is much better, though not gone completely.

 

The SI joint pain is quite possibly the worst. I also had this, with pelvic floor dysfunction. I had physical therapy....lots and lots, including

visiting a very special PT who works on the pelvic floor. 

I'll spare you all the gory details, but it was not fun.

 

Before I was gluten-free, I tried everything to stop that pain, including the shots. No help.

Wrecked my gut using NSAIDs prescribed by rheumatologists. Never helped the pain level.

I take nothing now.

 

The point is....off gluten, healing, moving, therapeutic measures...calcium/mag/D and some collagen supplements for bones and connective tissues repair and I move better than I did when I was 35 (which was 20 years ago)

 

Hang in there, everybody!

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I get joint pain with swelling.  On diagnosis the swelling was so bad that I had stopped wearing any rings.  I had to keep putting them on smaller fingers and I gave up.  After the gluten free diet my finger joints went back to regular size and I was able to wear the same rings on the correct fingers again.  When I get into a bad period of glutening they swell up again, and I actually had to cut one of the rings off one time as I couldn't get it off otherwise and it was cutting off my circulation.  I'm back to normal now.

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Do you have swelling? I have had joint pain for almost two years now, but I've never had any swelling. My joint pain is severe at times and although they get warm, they never swell.

I get pain in some joints and I get pain in non-joint areas.  I have no swelling.  I recently had a chest x-ray incidental to a cold virus I had and they looked clear.  My blood work is clean.  Calcium, BUN, Albumin are all fine.  I have no RA factor.  I don't think its a fibromyalgia.  Its just weird.  Its not normal for me but my tests say I'm normal.  Go figure.

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I get joint pain from nightshades, soy and hypo-thyroidism.  No swelling so far, just sore joints.  Well, no joint swelling, but plenty of leg and feet swelling.  For me the joint pain stays away as long as I take care of the issues that cause it.  It does provide some motivation! :)

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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