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Celiac Disease Can be a Pain in the Joint

Unexplained joint pains (arthralgias) were one of the main symptoms that I dealt with prior to my celiac diagnosis. Throughout my twenties I had pain and stiffness in my fingers, knees and ankles that would come and go with no apparent explanation.  I ran track for part of high school and continued to run for fitness during college, but shortly after graduating had to stop running for a long time due to my joint issues. I was evaluated over and over again for lupus, rheumatoid arthritis, Lyme Disease, etc. but there were never any answers for why I had developed the pains. So I learned to live with them and I stopped running. Fortunately, since going GF in 2010 my arthralgias have almost entirely disappeared, and I was able to resume running again.

Based on previous research, up to 25% of people with celiac disease may experience joint pains. In just the last few months there have been a few interesting studies published about the relationship between celiac disease and joint issues.

A group of researchers published a paper last week showing a significant relationship between joint inflammation and celiac disease in children. They evaluated the knees, hips, and ankles of children with celiac disease (n=74) by ultrasound. They compared ultrasound findings of those with treated v. untreated celiac disease and found that 50% of those who were not on the GF diet had evidence of joint inflammation v. only 11% of those who were GF.

In a recent Tunisian study, researchers tested over 200 women with unexplained arthralgias (joint pains) for celiac disease.  They found much high rates of undiagnosed celiac disease in their sample (2.37%) than in the general population in their country (0.28%).  Interestingly enough, all of the women who were diagnosed did have other symptoms of celiac disease, such as anemia and infertility, when their medical records were reviewed after-the-fact.

In addition, Dr. Guandalini refers to the relationship between celiac disease and arthritis in his review of celiac disease in children that was published earlier this month in JAMA Pediatrics (see my previous post for a summary and for the actual reference).

Although the relationship (or lack of one) between juvenile idiopathic arthritis (JIA) and celiac disease appears to be debatable in the medical literature, this story, which was published last year in the NY Times, does present a compelling case for a link, at least in some cases.

Have any of you experienced celiac-related joint pains? If so, please share, as your stories may lead others to be diagnosed…

References:

  1. Lubrano E, Ciacci C, Ames PR, et al. The arthritis of coeliac disease: prevalence and pattern in 200 adult patients. Br J Rheumatol. 1996;35(12):1314.
  2. Iagnocco ACeccarelli FMennini M, et al. Subclinical synovitis detected by ultrasound in children affected by coeliac disease: a frequent manifestation improved by a gluten-free diet.Clin Exp Rheumatol. 2014 Jan 20. [Epub ahead of print]
  3. Ghozzi MSakly WMankaï A, et al. Screening for celiac disease, by endomysial antibodies, in patients with unexplained articular manifestations. Rheumatol Int. 2013 Dec 1. [Epub ahead of print]

68 thoughts on “Celiac Disease Can be a Pain in the Joint

  1. Cherish

    I didn’t personally have joint pain (though I do now if I get glutened), but I had muscle pain. I was diagnosed with fibromyalgia at 19.

    I find this interesting, though, because my husband was diagnosed with rheumatoid arthritis despite a negative rheumatoid factor. (He was also tested for celiac, and that came back negative as well.) After I was getting glutened at home, we finally went GF at home, and my husband’s RA has gotten much better. He’s still on meds for it, but he doesn’t have the horrible fatigue he used to get. I guess it’s really made me wonder if gluten is part of his problem.

    1. Jess Post author

      Hi Cherish,
      Thanks for piping in. It really does sound like more than a coincidence for your husband. I am convinced that both of my parents had gluten issues. My mom has Celiac and my dad died in 2007, but looking back he had fatigue that worsened after eating and always seemed to be on the autoimmune spectrum (plus most of his siblings had AI diseases, including Behcet’s, Grave’s, and Hashimoto’s).
      Also, I’ve been thinking as you as I looked further into the casein-gluten link (upcoming blog post!)
      I hope you’re well!
      Jess

  2. Pam Hargrave-Thomas

    Yes – I know. I was diagnosed with Celiac when I was 50. I had to have my hip replaced when I was 51 after 11 years of searching for a cause of myalgia paresthetica, anemia, AVN, osteoarthritis, and general malaise. I’m great now at 56 years young! I can’t get a doctor to say Celiac was the cause but what do you think? Love the poster & your blog!!

    1. Jess Post author

      Thank you so much for stopping by and sharing your experiences Pam. It’s nice to meet you!
      Isn’t it great to start to feel young again after going GF?
      I really think that the link between chronic gluten ingestion and joint pain has been under appreciated in those of us who have celiac disease. As you can see, in the first study that I cited, even tiny tots with celiac have joint inflammation on ultrasound…I can’t even imagine how ugly the joints of all of us who went decades before diagnosis must look!!
      But, we are lucky to be in the small minority of celiacs who have actually been diagnosed, right?
      Jess

  3. Vik

    Hi Jess, yes indeed, joint pain was a big deal for me. Also in neck and a lot of back pain. I was always told it was just arthritis. Xrays even show arthritis. HOWEVER, like you, my pain has cleared up significantly since going GF. I haven’t been to the chiro since, and have only taken ibuprofen a handful of times.

    1. Jess Post author

      Hi Vik,
      Thanks so much for sharing! Like you, I hardly ever take Ibuprofen anymore as I rarely have joint pain. I had to take it all of the time prior to be diagnosed with celiac and going GF and I sometimes wonder if it contributed to all of the leaky gut/increased intestinal permeability/mast cell/IBS junk that I’ve experienced as a result of this lovely disease! I guess that it would be healthier for me just to move on, but I can’t escape the feeling that it’s all interconnected.
      I hope you are having a happy new year! I am escaping the polar vortex of the midwest tomorrow to head to a nutrition conference in Spain!
      Jess

      1. Vik

        Jess, Have a great trip! Looking forward to hearing about your conference. And about traveling GF, which isn’t a situation that I’m comfortable with. I just do the best I can and hope that all is well on the inside (since I don’t get dramatic glutening symptoms). And take Lara Bars wherever I go :-).

        1. Jess Post author

          Hi Vik,
          It was a great trip and I was able to eat GF in Barcelona much easier than in the States (at times I felt like I was in celiac heaven). There will be a blog post coming soon…
          Jess

  4. leslie johnsen

    Yes, yes, yes!!!! I had/have joint stiffness and periodic joint pain. The stiffness is the worse! My Rhematoudologist at the time started me on Methatrexate (sp). Prior to starting, I was to begin with One month of Folic Acid, 1mg per day. Wha-la! My stiffness improved greatly so I refused the low dose chemo drug and continue to use Folic Acid. I’m now on 1 mg twice daily. Struggling again with severe stiffness of feet/ankles. Its always about diet it seems and sticking to daily exercise.
    I struggle daiky now with lower extremity stiffness and edema. Edema worse on left lower leg/ankle/foot. My doctors just don’t know where to go from here.

    1. Jess Post author

      Hi Leslie,
      I am going to assume that you have celiac disease since you are reading my blog. Do you have any addition; AI diagnoses that may explain your arthritis (and the rational for needing methotrexate). As far as I know, if your joint pains/stiffness/swelling are secondary to celiac, then there should be a marked improvement after going GF…
      That being said, I also get joint pains after eating any foods with a high soy load (soy flour or soy protein), and they are pretty much indistinguishable from those from gluten. I still have not quite figured out why, unless I have had a lifetime soy protein intolerance and had been able to avoid soy most of my life (until I went GF in 2010 and began to eat foods that actually contained it!)
      Thanks for stopping by!
      Jess

  5. Cindi

    Just found your blog. I am trying to find what is going on with my body. Horrid stomach pain, burning , constipation, and very sore weak elbows. I am lethargic. Went to GI and had endoscope came out negative, had the celiac blood test today. I have had ultrasounds, HIDA scan , ct scan ,colonoscopy and endoscope. I am 50 years young, overweight, low blood pressure and healthy. The fullness in my stomach makes me not want to eat, yet I have not lost a pound! I feel like I am losing my mind and my checkbook ! Any ideas would be greatly appreciated . I love your blog

    1. Jess Post author

      Hi Cindi,
      Your story is similar to many others who I have met since starting this page last year.
      How did your celiac blood tests turn out? Were you eating gluten at the time of your blood tests and endoscopy? This is important because if you are already GF when your celiac tests are done they can be falsely negative. Did the GI doc take enough biopsy samples of your small intestine when you were scoped? I learned at the International Celiac Disease Symposium last fall that many biopsies are not done correctly when patients are being evaluated for celiac disease (4-6 need to be done, including one from an area called the duodenal bulb).
      Another condition to consider that can mimic celiac disease is mast cell activation syndrome (MCAS). I just wrote a post about it on here last month if you’d like to check it out. I was diagnosed with it within the last year and since then I’ve met several other women who have both MCAS and either celiac disease or non celiac gluten sensitivity.
      Please let me know how your testing turns out and good luck to you. I hope that you are soon as healthy feeling as it sounds like you should be!
      Jess

    2. Cindi

      Yes I have now been diagnosed with Celiac. The blood test was positive. I will now be reading your blog faithfully. Could you recommend a GF cookbook also would my hypo thyroid meds need to change due to Celiac? Thanks for your blog. I am trying to remind myself this disease is fixable, I am the lucky one.

      1. Susan German

        I am 77 years old and diagnosed with Celiac 5 years ago by a 2nd gastroenterologist. Symptoms began over 12 years ago. I was always ignored or was told IBS then coloitis then maybe crones disease. Finally went to 2n gastro. Did not take him long to diagnose. A two sheet questionnaire read by him with me to answer only YES or NO. No other comments allowed. Then he scheduled blood tests–two or three. Positive for celiac gene. He then ordered endoscopy to confirm celiac. Endoscopy and biopsy showed completely flatted Villi and erosion. Follow apt scheduled for diagnosis explanation. Celiac. I have the gene for Celiac. I did not believe him until I went gluten free and on the 17th day I came to life. Unbelievable. So many times I had diarrhea. projectile vomiting. pass out (BP) dropped too low–EMS was called so many times, hospitalized in ER for evaluation. I vomited in grocery stores, when shopping at Wall-mart, in the car. I had to keep plastic bags with me. I became pretty neat and clean later in the episodes. the stomach pain so bad I actually wanted to DIE. I am not exaggerating. I have come so far. Now I must watch gluten closely or I develop major hip joint pain and abdominal pain. BUT-no vomiting!!. This only a part of my story. I could do a seminar on Celiac Disease.. Everyone in the United States should be tested for Celiac at the first symptom. There are so many symptoms. It leads to so many major diseases including rheumatoid and cancer. I had breast mastectomy last year–stage 1, all looks good so far. My immune level very low, he ordered major doses of vitamin D, so have these tested also. Oh my. I am so much better. Back to myself as I was 30+ years ago. I was gradually attacked when the gene was triggered. You all please educate yourselves on Celiac and the gene. I am gluten intolerant — not sensitive. You need testing and a super gastroenterologist. Thanks for this site and thank you for “listening”
        Susan

  6. joann

    I was diagnosed with CD in January …over many years ( I’m 66 ) I have had most of the health issues that have been discussed in your posts. I am on the SCD (Specific Carbohydrate Diet), within 4 days of starting this diet my D symptoms stopped. It is a difficult diet because it eliminates dairy, sugar, all starches and glutens. I hope to personalize SCD at some point, but right now I’m just happy to be feeling better.
    Joann

    1. Jess Post author

      Hi Joann,
      I am sorry to hear that you suffered for so long but am thrilled to learn that you are feeling so much better on the SCD diet. Do you have any recommendations for good resources for the SCD for others who may benefit and would like more information. Thanks so much!
      Jess

  7. Angela

    I started to have severe pain in my ankles. And later on in my wrists. It wad So painful that I could not sleep. I had no choice to take pain killers. This was around the time I was pregnant with my second child. It got worst after i gave birth. It is 2 years that I’m know I have Celiac. Ever since I went 100 percent GF, the pain went away. And I did get tested for all kinds of stuff.

    1. Jess Post author

      Hi Angela,
      I am glad that your pains disappeared after going GF. Like you I was tested for many other conditions because of my joint pains, including about 4 to 5 times for rheumatoid arthritis! I think there are many others who are suffering from joint pains from undiagnosed celiac. If we can help even one other person get diagnosed, and live pain free, I will be so happy. Thank you for sharing your experience.
      Jess

  8. Kris

    My daughter was diagnosed with Juvenile Idiopathic Arthritis a year and a half ago because of an unexplained swollen knee and morning pain and stiffness. We saw a pediatric rheumatologist for over a year where the treatment was naproxen and steroid injections. My daughter had complained of tummy pain and had diarrhea and constipation on and off, which I mentioned to the doctor. I asked the rheumatologist several times whether my daughter’s inflammation could be food related and the answer was always “No.” After reading the NY Times article “The Boy with a Thorn in his Joints”, some additional research and elimination diet attempts, I asked the rheumatologist to test my daughter for a gluten reaction. Her tTg blood test showed that her reaction was very high and we were sent to a pediatric gastroenterologist, who did a biopsy and diagnosed her with Celiac disease. She has been gluten free for 3 months now and the joint pain is greatly reduced and nearly gone. She still has tummy pain though. How do we get the word out to pediatric rheumatologists that gluten can be a cause of joint pain and that a blood test should be run? Especially before JIA patients are automatically put on a long-term steroid/methotrexate treatment plan.

    1. Jess Post author

      Hi Kris,
      I think that one of the best things that we can do is to continue to share our stories and experiences. Traditional medicine, which I am a part of, has largely ignored the role of food and nutrition in many chronic physical, mental, and behavioral conditions. Things are slowly changing, which is good, but it appears to be at a snail’s pace. I just watched Dr. Terry Wahl’s TedX talk about how she has treated her chronic progressive multiple sclerosis through diet alone and was able to go from being totally non ambulatory and wheel chair bound to being able to participate in an 18 mile bike ride approximately one year after going on a vegetable-heavy, anti-oxidant, non-procesed, grain and fairy free diet.
      Another thing that could help a ton would be getting someone to write your son up as a case report for one of the pediatric rheumatology journals. Perhaps others can pipe in with other ideas. My futures focus, hopefully, will be to start traveling around to medical schools to lecture about all of the possible symptoms from untreated celiac disease (so that it gets hammered into their heads to consider celiac disease in patients with symptoms while they are still early on in their training).
      Jess

  9. Laura

    When I came down sick in 2002-2003 with what was probably celiac disease, joint pain was one of my main symptoms. First one of my elbows started to hurt. Then both of my elbows and both my knees started to hurt. Other symptoms were: Sore tendons in my forearms. I couldn’t hold a cast iron frying pan out at arm’s length because it hurt too much. I couldn’t twist my bicycle handlebars to change gears because it hurt. Lower abdominal pain. And very woozy. I would lie in bed and stare at the walls as waves of Wooze washed over me. Wooze is sticky and your thoughts get stuck in it like soldiers trying to stump through marsh muck. My hands and feet were cold and I had a lot of symptoms of iron deficiency.
    When I quit gluten and other foods, I had joint pain from food challenges, the day after. I got joint swelling sometimes too. I found a sprained finger was harder to bend when I was sick from a food challenge. I had this kind of symptom from food challenges in the first year or two I was GF.
    Now, I no longer get joint pain when I eat one of the foods I have these delayed allergies to.
    I wonder if the authors have an idea of what causes the joint pain. One possibility is immune complexes. Serum sickness, an immune complex disease, can cause joint pain. Perhaps with the very leaky gut in celiac disease, the body goes wild creating IgG antibodies to protect the mast cells from being triggered – and the IgG/food complexes go into the bloodstream and irritate the joints.

    1. Laura

      Also, a couple years after I went GF, many more delayed food allergies became evident. It turned out I actually had allergies to almost all the foods I had been eating before I quit gluten!
      Before quitting those foods, I would go running every other day. I have an old injury in one of my knees, and it would hurt from running, so I needed the day off to recover.
      After quitting those foods, I could run without pain.
      But then I found out I’d developed arthritis in my injured knee. The doctor told me running was bad for my knee, so I had to quit :(

      1. Jess Post author

        Hi Laura,
        Thanks for sharing your experiences. Your hypothesis about IgG immune complexes is fascinating, and I don’t believe that it was mentioned in any of the articles that I referenced.
        What forms of exercise did you adopt when you had to stop running?
        I am just coming off a 3 month running break from a knee injury and I had a really difficult time finding any type of exercise that fulfilled me physically and emotionally/mentally the way that running has.
        Thank you. Hope you’re well and if you’re the Laura I’m thinking of, I owe you an email!
        Jess

  10. Jami Graham

    My son of 13 years of age was diagnosed with Celiac a month ago. Over the last year he was getting sick a lot! His main symptoms were chronic fatigue and nausea. He would get his symptoms in increments of 3-5 days a least once a month. We couldn’t figure out what was going on with him. We did a lot of guessing at that time. He has a severe peanut allergy so at one point we thought that maybe he was getting small traces of it in candy, cookies, etc…Then about three months ago the chronic fatigue and nausea kicked in and never left until the diagnoses. That’s also the time when his joint pain began. As soon as we started a gluten free diet within a couple days he felt better for one week straight but the joint pain never subsided. He is feeling good on and off now, joint pain continues (mostly in his knees), has missed four months of school, and left his club baseball team. This is a kid that was thriving in sports, school and every day life. He now is constantly missing school and has had to quit his baseball team because of the joint pain. I know every case seems to be a little different but I’m hoping and praying over time he will feel normal again and get to play the sports he loves and lives for. He has a great attitude about the diagnoses and is ready to feel good again. Mom and Dad are loosing some patients though and need encouragement.

    1. Jess Post author

      Hi Jami,
      Thank goodness that your son was finally diagnosed and put on the GF diet.
      I am sorry to learn, though, that his joint pains have persisted. A few thoughts…have you been able to meet with a dietician to review his diet to make sure that he is not accidentally getting exposed to gluten (causing his persistent symptoms). I am doing a lot of research and reading about non responsive celiac disease right now and in up to 50% of cases it’s due to accidental gluten ingestion (dental products, medications, etc). Secondly, is it possible that he has another autoimmune condition that may be leading to the joint pains, such as lupus or thyroid disease? Lastly, is it possible that he has any other food intolerances causing his symptoms? After I went GF in 2010 I inadvertently increased my intake of soy flour in GF foods and discovered that I get pretty severe joint pains and head aches after I eat anything with soy protein and/or soy flour. Just some food for thought…I hope that other readers pipe in with ideas too!
      Jess

      1. Jess Post author

        Hi Laura,
        I’ve had a really difficult time trying to find good sources demonstrating the science behind cross-reactivity between gluten and casein. Do you have any good resources you’d recommend? No hurries on getting back to me. In my reading and talking to others this keeps coming up and I’m wondering if it’s a true cross reactivity v. a concurrent cow’s milk protein T cell mediated immune reaction. Any info would be great when you get a chance.
        Thanks so much!
        Jess

        1. Laura

          Does this help? Bovine milk intolerance in celiac disease is related to IgA reactivity to alpha- and beta-caseins
          I wonder if the IgA antibodies are actually causing the reaction, because I thought IgA is usually protective.
          There was a comment in this article Intolerance of celiac disease patients to bovine milk is not due to the presence of T-cell stimulatory epitopes of gluten.
          So by a “true cross-reaction” you mean the same antibodies binding to two different proteins?
          I found out something interesting, reading the paper “Mechanisms of immunotherapy: IgG revisited”
          IgE bound to the high-affinity IgE receptor (FceRI) or the low-affinity IgE receptor (FceRII, CD23) on antigen-presenting cells can efficiently capture and focus the antigen, such that very low concentrations of antigen are able to stimulate responding T cells maximally. After binding of antigen the complex is internalized, processed and then presented on the surface in association with the major histocompatibility complex II (MHCII) for presentation to T cells.
          Would this be described as an IgE-mediated or a cell-mediated reaction? This is (at least part of) the mechanism for the late phase (several hours after exposure) of an inhalant allergic reaction. I wonder if something similar is going on with delayed food allergies (the “other food intolerances” in celiac disease).
          I’m not sure what the mechanism for “cell-mediated reactions” is – how the T cells get exposed to antigens. Would they normally be exposed via an antigen-presenting cell?
          I have a dog allergy where the late phase inhalant reaction is extremely sensitive and this seems to explain how that happens. I’m trying to desensitize this awful late phase reaction by eating small amounts of dog allergen and it may be working somewhat!
          I can probably download the pdf’s of those two references above soon if you’d like to see them.
          A long time ago I read a paper where they showed the IgA antibodies to gliadin in celiac patients, usually also bound to casein in vitro. I don’t have the citation for that, but the paper above probably has such info.

    1. Jess Post author

      Hi Angela,
      The jury is out on this one, except that everyone (experts, experienced Celiacs, etc.) will agree that our lipstick and lip glosses should be GF. From a chemical standpoint, and scientifically, the gluten protein is too large to be absorbed through the skin, so foundation, powder, blush and so on should be safe, but, on the other hand, I have heard a lot of anecdotes of people reacting to topical gluten. I make sure that all of my cosmetics are GF just to be on the safe side. Gluten Free Makeup Gal’s website is really helpful if you haven’t come across it yet.
      I’m sorry that I cannot give a definite yes/no answer to this one.
      Jess

      1. Camilla

        I am one of those who definitely reacts to gluten in make up. I’d always get itchy eyes within half an hour of putting it on. Not talking mascara or shadow – could not eve go near that! I am just talking about concealer and foundation. Did not wear any for years because I knew I obviously reacted to it. THEN, years later, gluten sensitivity was diagnosed (genetic via EnteroLab). I now use Mineral Fusion make-up (gluten free) with zero issues. Be very careful with sunscreens and all of that also. A lot of these products contain wheat. A good alternative to lotion is pure shea butter. For sunscreen, use a gluten free one or do as we did when living in Hawaii: cover up :)

        As far as my other gluten Sx, for the collective record, I’ll list them here. ALL of these Sx, many of which had been ‘with me’ for over two decades, disappeared within a month after eliminating all gluten in 2011:
        Swollen knee joints for decades (post gluten: hiked Machu Picchu, ski black runs, in-line skate!)
        Neck pain – always stiff (trigger point style/stiffness/fibro)
        Gum sensitivity
        Major brain fog
        Low energy
        Upper GI pressure (was operated for GERD at 29 y.o. I am sure it was caused by gluten!)
        Itchy eyes/Dry eyes
        Acne on and off
        Frequent urination (urgency)
        Sensitivity to cold (walk into a store with A/C running, start looking for a bathroom!)
        Rashes on and off
        Catching EVERY rhino or other virus getting anywhere near me
        Major sinus pressure and allergies
        And other issues I have gleefully forgotten about. I know there were more…

        Getting rid of gluten was a true godsend!

  11. Grace

    Hi,
    I had joint pain abt a year ago after 5 months I was diagonised with celiac desease by mistake. The doctor told me that I have to c a rheumatologist Bcs I have severe joint paint. He gave anti inflammatory and still have it, then he put me under prednisone for 3 months and plaquenil for 6 months and I’m following the 100% gluten free diet and I’m still in pain and the joint pain is still the same
    Btw; I don’t have any reaction other yheb the joint pain.
    Anyone can help me? And witch medicine do u recommend Bcs it seems nothing is working for me even not the gluten free :-(

    1. Jess Post author

      Hi Grace,
      I am a little confused when you wrote that you were diagnosed with celiac disease by mistake. Do you mean that you were told that you have celiac disease but really don’t, or did you mean something else?
      If you or your doctors believe that your joint pain is from celiac disease, and it’s not improving on the GF diet, then you need to get evaluated for nonresponsive celiac disease (at a celiac center if possible). In many cases if symptoms don’t improve on the GF diet gluten is either sneaking in somewhere (for example in a medication or from cross contamination) or the symptom is from something other than celiac disease.
      Jess

  12. Gabrielle

    I have celiac disease, have been gluten free for over 2 years. I developed joint pain and neuropathy symptoms about 6 months ago. A rheumatologist checked for lupus and RA, but everything was negative. I am not sure if this developed because I was glutened accidentally while eating out a week or two before the symptoms began. Or I am curious if I have a food sensitivity that I am not aware of. Which is more likely? Would joint pain/inflammation persist for 6 months after ingesting gluten? I have been very careful since then to keep from gluten sneaking in. I have tried eliminating common problem foods such as eggs, dairy, coffee, chocolate, soy, corn, but have not had enough improvement to figure anything out. I am just so frustrated and upset that I have not been able to exercise for so long because of the pain in my hands, feet, knees, elbows, and sometimes shoulders. Any thoughts would be appreciated. :)

    1. Jess Post author

      Hi Gabrielle,
      I am sorry to hear about your ongoing problems.
      In those of us with celiac disease, the most common cause of neuropathic symptoms is that gluten is somehow sneaking in to our diets (cross contamination). I did not develop my celiac-induced neuropathy until 2 years after I was diagnosed and went GF (and I then had to go GF to the extreme, omitting all GF processed foods, stopping eating at restaurants, etc. before it resolved).
      Have you kept a detailed food diary to see if there seems to be an association between what you are eating one day and your symptoms over the next few days? I figured out that I had a sulfite intolerance this way, but it took almost 2 months of food journaling to figure it out.
      I hope this helps. In the April/May issue of Living Without Magazine there will be a great article about the neurologic effects of gluten that you may be interested in (I was interviewed for it and told my neuropathy story).
      Jess

      1. Gabrielle

        Jess, thanks for your reply. I have meant to keep a food diary, but have not kept up with it very well. I am going to begin doing that and stick to it so maybe I can solve this mystery and I won’t be relying on memory/speculation about what I may have eaten that could be causing problems. Since the onset of all the neuropathy/joint pain I also have had to become more strict GF, I no longer eat out and am very careful about cross contamination. I have just that last little step to go to entirely cut out processed GF foods, that’s been hard because they’re “supposed” to be ok. :(
        I will be very interested to read that article, as well as to hear about your story! Thanks again!

  13. Jill

    I have been gluten/ corn/ soy/ shellfish free for 18 years. We found the multiple offenders by doing an elimination diet. I have had joint pain as long as I can remember. I am prone to tendonitis. The tendonitis has been career altering. There are some days the joints feel loose, enough so that the goal of the day is to get through it without injury. Sometimes I am more successful than others. There is something in nuts I need to keep the muscles from tightening up and so I eat about 3/4 cup of mixed nuts every day. I recently found that the joint pain is reduced significantly by drinking a lot of water. For every cup of tea I need to drink 2 cups of water.

    I read an article that showed calcium deposits in old muscle and tendon injuries. Could this be some of the source of continuing discomfort? A glass of lemonaide a day will dissolve kidney stones. Will it do the same for calcium deposits in muscles and tendons? Any suggestions?
    Jill

    1. Jess Post author

      Hi Jill,
      I wish that I could help you but your problems and questions are out of my area of expertise.
      Since you’ve had a restricted diet for so long have you had testing for nutrient deficiencies (like zinc, Vitamin B12, magnesium, etc.)
      Many of us on the GF diet end up needing to take supplements because we cannot meet our daily needs for micronutrients through diet alone, like folate and magnesium.
      Also, have you been evaluated for other conditions, like Lyme Disease and other autoimmune issues? Mast cell disorders?
      I’m curious to see if others have ideas.
      Jess

      1. Jill

        I have not been evaluated for specific deficiencies. My standard bloodwork, including iron, always comes back perfect. I was screened for rheumatoid arthritis a couple of times and it came back clean. Hand x-rays show no signs of osteoarthritis. I have not been screened for Lyme disease because there is nothing about the treatment I would be able to tolerate, and I do not have fatigue. As long as I stick to my diet, vary the foods as much as possible, and don’t break my routine, I do pretty well, except for the joint pain and injuries. I have not found supplements that did not have ingredients I cannot tolerate, so it is all diet.

        note to Gabrielle- Elimination corn is much more difficult than wheat. It can be in the wax on your cucumber or apple, on
        the strawberry picked by someone who had corn chips for lunch, in your toothpaste or table salt. It goes by a lot of different names. I have more specific info and experience with this if it is helpful.

  14. Sharon

    Hi Jess and All,
    Before my diagnosis my litany of joint and nerve-related issues included tendonitis both wrists, sciatica (one bout had to postpone a trip to Hawaii and another time bedridden for a week having to take many first and only codeine for the pain and missed a good friend and colleague’s wedding), hip bursitis (scariest and aside from the sciata the most painful), frozen shoulder that required a steroidal injection, as a kid weak ankles – was forever spraining/twisting my ankles. It is interesting that most of my issues dominated the left side of my body – left ankle, left wrist, left hip, left shoulder, left side with the sciatica.

    Like you Jess and I am guessing many others Ibuprofen was my friend to help me survive and function. I would almost have a panic attack if it was not in my purse because if the pain or spasms came I would not be able to function. When I look back from my days working in hospitals, high tech, and clinical research aside from the bedridden sciatica days I never missed work. I stuck it out. I never complained about all if this unless the Motrin or Advil was not addressing it, and I needed a Rx anti inflammatory.
    Never told about all my other odd and multi system issues that were less severe because I knew if I did I would be labeled a head case, a hypochondriac. My internist was fantastic in that she knew if I complained that I must be very sick. I recall saying to her I don’t know if I am tired because I am depressed or depressed because I am so tired. That was 20+ years ago when I had a hemoglobin of 8 no iron stores and they were ready to do a bone marrow aspiration as the hemotogist thought I must have cancer. 6-7 years ago my internist retired and I told my litany of symptoms to my new doc who wanted to put me on antidepressants in that it would help me be better focused and get things done. A few years later after I had refused the antidepressants she suggested that all my issues – I was then having severe hair loss – might be because I had celiac disease. I thought she was nuts until I educated myself on the new face of the disease and realized she was likely right.

    So I am amazed Jess how you made it through medical school and residency with your GI issues. I always had a delicate constitution as they say and could easily go either way but the severity of my GI issues came late in the game likely due to the fact I tended to be a low carb person after I took off all my weight. When I increased these the GI symptoms dominated.

    I remember praying taking care of my two kids and my father and working part time please God let me get out of bed to take care of them. I feared an episode like the one in my 30s when I was bedridden.

    I am now well and vigilant – though on Mother’s Day I asked ahead about the food in the restaurant but my husband’s family is so dismissive about my celiac that I did not want to ask about the cream that clearly had carrageenan. Should have drunk it black. Then the other day in a restaurant I trust did not stick with just veggies in the omlet and was glutened likely by the ham. Am in the middle of my usual two- week recovery period.

    1. Jess Post author

      Hi Sharon,
      I am sorry to hear about your recent carrageenan and gluten hits…I hope you feel better soon.
      I took more Ibuprofen, Napoxen, etc than I can ever imagine counting back when I was in my twenties. There were days during my medical training that I took 600 mg-800mg every 6 to 8 hours to be able to function because my knees and ankles hurt so badly…this did not help my untreated celiac disease one bit, and I suspect that my new onset mast cell issues may have something to do with the damage from the chronic NSAID use. My kidneys fortunately survived it all.
      As for the GI issues, they had been going on for so long that diarrhea and abdominal cramps and bloating were my “normal,” I did not know life without them. It was not until after I went off gluten that I realized that it is anything but normal to have sharp abdominal pains and diarrhea every day.
      There are so many out there who are still suffering with this, and who believe that their symptoms are all in their heads. I am trying to reach them, but, as you know, it is a challenge.
      Thanks, as always, for sharing your experiences and opinions.
      Jess

  15. Deepa

    Been suffering from odd joint pains and muscle pains (neck and shoulder) for past 4yrs. Thought the neck/shoulder pain was my work due to repetitive motion. got ergo adjust for all that. Then thought it was statins, maybe hormones (in my mid 40s), or likely stress and just lived with it. Went to doc last year, who gave me advil/relaxant and told me its stress. some days were good, some days bad but I couldnt figure out any correlation. but last 6 months, I would also wake up with neck/shoulder and lower back pain and hated to go to sleep knowing I will wake up worse. I exercised yet always had a tummy pooch, though I was only maybe 5lbss overweight.

    then just 3days back I happened by chance to google, gluten and joint pain and found all these blogs. I think I might have found the answer. Decided to try it myself. I have’nt eaten anything with gluten last 3days and my neck/shoulder pain is 90% gone. Its really unbelievable. never would have thought to associate neck pain with what I eat as I didnt have any stomach cramps. My belly is flatter in just 2days. I have emailed my doc whether I can get tested. Hope I have found the reason for my painful shoulder and overall fatigue from all those years.

    More than anything I am also thinking I should test my teen daughter though she has no ailments. She has been very cavity prone since baby and I am reading that kids with gluten sensitivity dont get the right minerals for proper teeth/gums and hence have bad teeth. Also I noticed now that she has started teen acne, what I think are pimples on her face, become a brown/purple scar very quick. I expect some hyperpigmentation, but on her the transition from pimple to purple mark is just overnight. Now I am reading that dermatitis herpetiformis is another manifestation of Gluten sensitivity. Debating whether to first get myself tested and then her or start her on GF diet too. We are south asians so going gluten free with our traditional foods is not too difficult though she might have difficulty giving up her pizza and such initially.

    1. Jess Post author

      Hi Deepa,
      I am glad to hear you are feeling better off of gluten. I think that it sounds worthwhile for both you and your daughter to be tested for celiac disease. You will need to get this done ASAP for yourself, as the longer you are gluten-free, the less reliable the testing for celiac will be. I’d recommend getting your daughter’s testing done before she goes GF so that it is as accurate as possible. She will have much easier time navigating having to eat GF at school, in college, etc. with a firm diagnosis of celiac disease. There are also some amazing medications in development for celiac disease that will only be available to those with a diagnosis of celiac.
      There’s increased recognition in the medical community that non-celiac gluten sensitivity (NCGS) is a real diagnosis, but celiac disease needs to be ruled out first before one can be labeled as having NCGS.
      I hope this helps. Good luck!
      Jess

      1. Deepa

        Thanks for the reply Jess. I did get the blood test (tissue tranglutaminase IgG/IgA) within 9dys of going GF and it came came back completly negative IgG=0.14; IgA=0.22. The pcp doc did not advise anything else and said if GF diet is working ti improve my paings then to go for it. I looked into my vit d levels from last years test and since it was on the low side of the expected range 24ng/ml (range is 20-79) so I upped my intake recently though again doc did not say anything about taking extra.

        I decided to not test my daughter as I didnt come up positive for celiac and am assuming its non-celiac. No point traumatizing her with blood draws and such during finals week at high school. Thankfully she has been awesome and is sticking to GF with me. Also after reading about vitamin deficieny I am working on giving her some extra vitamin/mineral (vitamin k,iron and Mg) that were not in her gummy vitamins. The lack of K explains her warm weather nosebleeds that take a long time to clot every year I think. I am hoping to see her teeth remineralize in those white spots from a GF diet and added vitamins. Her acne has subsided too.

        Things have progressively better with regards to my body pains over the month as I continued my GF diet until I got glutened (I think flour was used in the curry) about 5dys back. No stomach cramps at all but with in 8 hrs I had distinct arm pain and weakness. By the time the gluten reached my intestines I got a lower back pain. then next day knee and shoulder. I knew it would clear up in 24-48 hrs and it did. But 5days later I am left with this ants crawling type of tingling in my right shoulder and tired feeling. Time will heal I think.

        One of the things that struck me while reasearching all this is that I have always had moderate amounts of protein in my urine since my teens. docs have not found any reason and told me about possibly developing kidney disease in future. I wonder if if gluten had something to do with those readings? Will be interesting to get a new urine reading in the future.

  16. Leila Hall

    Hi Jess,
    I was diagnosed with Celiac 6 years ago,4 weeks after the birth of my fourth child. I was 32. My paternal uncle had been diagnosed before me. Since then his brother my dad’s other brother has been diagnosed, along with my cousin. I have had joint pain long before I was diagnosed and still have joint stiffness and pain even after maintaining a GF diet. I was just wondering if this is unusual? It has gotten better but has not gone away entirely. I regularly work out but after a work out my hips get very stiff.

    1. Jess Post author

      Hi Leila,
      Thanks for writing. I am not sure if it is normal or not. My joint pains went away after I went GF, but they do return whenever I get cross-contaminated (which happened a lot during my 1st 2 years after I was diagnosed a kept an shared GF/non-GF kitchen, but barely ever happens now that we’re a 100% GF household). My other joint pain culprits are soy and sulfites.
      It may be helpful to talk to your doctor to see if there may be another AI condition going on.
      Hope this helps!
      Jess

  17. Jill

    Update: I did biofeedback, and it suggested deficiencies of copper, zinc, magnesium, and several enzymes and amino acids. Copper was the most significant. Having researched good sources, I am now taking a tablespoon of black strap molasses twice a day. The improvement in my joints in incredible. They aren’t perfect, but not far from it. I am also adding liver twice a week. Where I was up during the night most nights, I now sleep through most nights. Most remarkable is how much clearer my head is. I had not appreciated how brain fog had been creeping up on me. Bloodwork looking for trace mineral deficiencies did not find anything other than Vitamin D. Perhaps one must be mostly dead before they show in the blood. It took about a week of molasses to feel a difference, and improvement continues a month later. Thank you for suggesting we check the mineral level.

  18. Stephen

    I have recently had problems with my digestive system and booked to have a H.Pylori test with my local GP. Whilst waiting for the test date I read an article on Gluten free diets and thought It may help. After being on a Gluten free diet for approx four days I have to admit there was not a great change in my digestive symptoms.
    That’s the not so good news, but then staggeringly and completely unexpected result of being gluten free for just a four or five day period was that my previously lived with problem with my back and hip had diminished to a point that I have not experienced for many years. To compound that I have also suffered with morning type migraine headaches for many years which has also benefited and lead to a really dramatic improvement.

    I know these are early days but The difference before and after was like night and day, I hadn’t realised the extent of my joint problems because I guess over time I guess I thought ir was age related and had basically got used to them.
    I hope the coming months will see an even greater level of improvement but in fairness I would be more than happy to settle for what I already have.

    1. Jess Post author

      Hi Stephen,
      I am glad to hear that your joint pains are improving on the GF diet. I had awful arthritis prior to my diagnosis and it was one of my first symptoms to improve (thankfully). I also have a friend with rheumatoid arthritis who was able to go off of all of her RA meds after starting the GF diet a few months ago.
      Have you been formally tested for Celiac disease? If you haven’t, you may want to consider doing so soon, as the testing is much less accurate the longer one has been GF.
      Good luck to you!
      Jess

  19. Tracey

    Hi,
    I have read numerous posts on various symptoms, and feeling better when starting the GF diet. I am wondering if anyone out there was sick, diagnosed with celiac, on a GF diet for a few years, felt better – but not 100%, and then got really sick again despite being very strict with diet? I was confirmed celiac with a scope and biopsies. I still have many celiac symptoms. My worst symptoms the last 3 years are the joint and muscle pain. Some days I just sit and cry. Some days it hurts to walk, to hold my baby, get a hug, even wear certain clothes. I am getting drove everywhere, as the vibrations of even being a passenger are painful. After me being told for 3 years was likely just gluten in my diet, I went a year of preparing everything in my kitchen myself from scratch, getting steadily worse. The doctor now says it is fibromyalgia. I am slowly being increased on medication to see if it stops the pain. I wonder if could be anything else, as seems to often be the diagnosis given when they can’t figure anything else out. I was tested for lupus but the ANA was negative.

    1. Jess Post author

      Hi Tracey,
      I am really sorry to hear that you are still experiencing so many symptoms. Have you had your celiac antibodies checked to make sure that they have normalized while on the GF diet. I felt better for my first 18 months after my celiac diagnosis and going GF and I then started to get sick again and developed neurological symptoms from celiac disease even though I thought I was doing my best being 100% GF. It was not until we took every single trace of gluten out of our home (I was had been the only GF person in a house of gluten eaters) that my neurological symptoms improved.
      Another diagnosis to consider is mast cell activation syndrome (MCAS) which can be triggered by certain foods and additives, and is poorly understood and under-diagnosed. I wrote a post about it on this page in January 2014. I am pretty sure that it can be associated with muscle and joint pains, and there seem to be many of us with celiac disease that also have MCAS going on to some degree.
      Jess

  20. Katie

    Thank you for the intelligent bias that you have when it comes to dealing with Celiac Disease. When I went gf, everything got better, my skin, my hair, my eyesight. I thought I was homefree. I began getting worse again which ended in me having pain in my joints that felt like muscle spasms. Through trial and error, I found I could not eat nightshades. If I eat. Now, it is more debilitating to eat a pepper than get glutened. The inability to tolerate nightshades is higher in people with celiac disease. The hallmark of this inability is joint pain. I have stopped the three medications my rheumatologist prescribed for pain. Being pain free is heaven.

    1. Jess Post author

      Hi Katie,
      Thank you for sharing your experience. I am so happy to learn that you are feeling better. I had on and off joint pain through out my 20s and early 30s that totally resolved when I went GF.
      I have had others mention that they cannot tolerate nightshades too. I’m wondering if this is a temporary problem somehow related to gut healing v being a permanent intolerance.
      Anyway, I wish you well.
      Jess

  21. Jill Skinner

    A year later, after adding a tablespoon of black strap molasses twice a day,the joints are continuing to improve and I have had no new tendonitis for several months.

    However, the vitamin D levels have dropped significantly. If you raise calcium without also raising the fat soluble vitamins….. what do you know about the balance needed for bone health?

    Also, I changed out the light bulbs in the rooms where I spend the bulk of my waking time, installing full spectrum bulbs. I read something that said 6 hours under these bulbs was equal to 30 in the sun. Can you verify this?

  22. Pamela

    I just found your site today. I am 45 years old. I had iritis and achy joints and was diagnosed with RA in 2010 despite a negative RF factor (all other inflammation markers were high) and put on methotrexate. I felt better except the side effects of the mtx was rendering me useless for two days each week. I was tested for gluten and other food sensitivities 5 months ago with gluten, dairy and several other foods resulting with a high immune reaction. I started feeling better about 10 weeks after being gluten and dairy free. I am now completely off all prescription medication and have never felt better. I had several other medical issues over the years too that I feel could have been related – malfunctioning gallbladder, extremely low Vitamin D, anemia, etc.

    1. Jess Post author

      Thanks so much for sharing your story Pamela…I am so happy to learn that you are feeling better. I also have a friend who was initially diagnosed with RA but really ended up having undiagnosed celiac. Once she went GF she was able to wean off of methotrexate as well.

  23. Missy

    Currently two and a half months in to a gluten challenge after 8 years mostly GF. I’m now having severe knee and hip pain. I forgot this is how I felt for several years.

    Blood work at one month gluten free (my GO decided to do it even though I doubted anything would show up) was negative, but I’m homozygous DQ2.5 so pushing for an endoscopy. Have gastroenterologist appointment in January. Fingers crossed!

  24. Alex

    Hello,
    I’m 38 and struggling everyday for food, backaches and so on. I had a blood test which came back negative (I had to beg my doctor for it) Should I mentioned I’m French and Coeliac is not much diagnosed? Anyway, test is negative but I don’t remember a day since I was young where I wasn’t bloated or having stomach cramps or pain in my knees and weirdly my tibia.
    Now, I have pain in my hips. I can’t stand-up for a long time, or walk for too long but it varies from day to day. I also have pain in my dislocated right shoulder and it is spreading until my neck (I feel rather stiff) X-ray say I have a lot of pressure upon this part. I also feel like stretching my muscles all the time.
    I also had a baby and she is allergic to milk protein so I stopped dairy in my life. Lost a lot of weight and I felt my health improved for a while but it didm(t last long….I’m sure of one thing: I don’t tolerate dairy at all!

    As for the coeliac disease, I don’t know what to think…I’m stupid to want to chase the docs to prove I may be gluten intolerant? My test was negative. They all say my bowel is weak and lazy! Yeah right, I don’t need 10 years of study to understand that….
    I need to find a solution, my nights are painful and I can’t keep on like this.

    Maybe you can have some ideas?

  25. Brianna

    Hi Jess,

    Blogs like this are so interesting to me because as common as Celiac Disease is these days, I still find that I learn more and more information about it each and every day.

    I have been diagnosed and GF for two years now. I have found that eating out is the most difficult (obviously). I used to think that if I did not end up with GI issues or stomach pains then that was a win in my book but boy was I wrong. One of the biggest symptoms I get now is bad joint pain in my wrists and knees. I most commonly get this symptom when I am glutened through cross-contamination, as opposed to full on consumption, although I get the symptoms for both instances. The joint pain, for myself, typically lasts anywhere from three days to 3 weeks. The biggest indication for me is that I typically feel a headache coming on about 10 minutes after I have ingested something, and then the rest follow.

    Another important thing to note here is that when I did the blood test it actually came back negative for me (and I was not on a GF diet at the time). I did not go back for an endoscopy/biopsy until about a year later, wherein it was confirmed then. I have also found that I have to be extremely diligent with regards being Gluten Free and what that actually means. So much so that I even replaced a lot of my kitchenware as that can still contain tiny bits of gluten from use over years.

    I just wanted to say that I appreciate blogs like this one and I hope that everyone that has read and/or commented here finds a tiny bit of peace in knowing that you are not alone!

    1. Jess Post author

      Hi Brianna,
      I really appreciate that you took the time to comment and share your experiences with joint pain as a symptom as well as having seronegative celiac disease.
      I agree with you that every single comment on here will likely help many others.
      I wish you well.
      Jess

  26. Therese

    I could be the poster child of the subject joint pain and Celiac disease. It has been 22 years since this lovely symptom came into my life. It all started after my first pregnancy. It was all over bilateral joint discomfort. I also had extreme fatigue. But raising 2 children I didn’t have time to get extra rest. Many years and negative blood tests later, I tested positive recently for celiac. So many times on and off the gluten free diet and meds. Nobody has any answers when tests came back negative. I went home often with the feeling it was all in my head. But how could I hurt so much. Good news is I know now and am getting ready to see if f2f is going to help with the joint pain. I feel my Dr’s should have pushed for a biopsy years ago. They dropped the ball!

  27. Robyn

    Hi Jess,

    My family doctor sent me for a blood test earlier this week to check for celiac disease, as I have been having diarrhea for a week now and have noticed a change in bowel habits for a couple months. I started researching celiac disease and I had no idea that there are so many symptoms.

    I am in my mid-20s and have been suffering from multiple symptoms for quite some time (some began as long as 10 years ago). I never assumed that maybe these things are all related, and I only go to my family doctor for the unbearable things, as I think she will begin assume I am a hypochondriac. I have joint “discomfort”, itchy scalp, night sweats, white build up on tongue, and my libido has completely disappeared, to name a few.

    The joint discomfort is the worst part for me. I used to run and play all kinds of sports in high school but had to stop during my senior year because my feet would swell and hurt so badly. My knees and hips have started to bother me in the last few years. I wouldn’t call it pain, it’s more of a dull ache that I can’t seem to pin-point exactly.

    I will not be getting my blood test results back for another week or two, but I was wondering if you think these symptoms could all be related? And do they sound like they could be celiac disease? My mom was diagnosed with RA in her early 30s and I have been tested for that but it has come back negative. In the meantime I think I will track what I eat and when my symptoms flare up to see if I notice a pattern.

    I would GREATLY appreciate any insight you could give me!

  28. Hayley

    Gave birth in Aug 2014, had terrible ongoing back pain which I put down too chilbirth – did everything, physio, Chiro, yoga, Pilates, swimming, changed mattresses, drugs, saw a neurologist who said I have a fractured L5 but he said I could have been born with it? I was even looking at getting a spinal fusion hoping that would help. In Dec 2015 I was diagnosed with CD with blood tests and recent endoscopy (waiting for my genetics tests to come back) – since changing my diet my and bam back pain gone but I have ongoing knee, elbows, finger and hip soreness/stiffness. Even though I have converted to the 100% GF diet I still have this (unless I am getting gluten in an unknown source – such as eating out which I don’t do often), what type of drugs or vitamins might help my join pain?

    Thanks for listening

    1. Ebony Trotter

      Thank you, thank you, thank you for being a credible blogger! Thank you for the cited references! I just left a website that is citing inaccurate information as fact. I am an RN with a celiac Dx. I just woke up in tears because my joints hurt so bad. Despite my best efforts, I got glutened while traveling.

  29. Elly phant

    My recent problems started a year ago. I was mistakenly diagnosed with ibs instead of a kidney stone. Then I had knee pain and diagnosed with osteoarthritis. With a change in diet, the knee pain subsided, but the increased carbs gave me itchy skin rashes that lasted until I went gluten free and changed my detergent. Now I have no ibs, no potential kidney stones, and no skin problems.

    1. Elly phant

      Thinking back, my father did not eat bread or pasta until he got old. Eventually, unable to move his joints, he was diagnosed with Parkinson’s.

  30. Debbie

    I would love to hear from people about how long after going 100% gluten free it took for the joint pain to subside? I have not been officially diagnosed with anything, but have some very very low level autoimmune antibodies and a bunch of symptoms including stiff hands and feet, especially when i wake up. I’ve been gluten, dairy, nightshade, nut, soy, sugar and all grains free for about a month now.

    Thank you!
    Debbie

    1. Elly phant

      I had stiff knees for a few months last winter, diagnosed with osteo arthritis. I endured a shot in the knee which hurt like h… and didn’t help my condition. The doc lost my x-rays and referred me to a physical therapist who I finally saw a month later. In the meantime, I read how osteo arthritis was helped by reversing the atkins high protein diet and eating less meat. It worked. But I was not used to eating wheat and wound up with skin rashes that lasted two months until I went gluten free.

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