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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Joint Pain
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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

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

Bea

Thanks, Bea.

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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.

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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

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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!

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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:

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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.

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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.

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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!

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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.

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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.

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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!!

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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.

Enjoy Life Foods Soft and Chewy Caramel Apple Snack Gluten-Free Bars

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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?

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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 )

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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!

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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. :)

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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.

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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.

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