Cough, hack, sneeze, cough, sniff, wheeze, cough, hack.
You may want to stand back from your computer screen a bit while you read this as I’ve got what it seems everyone else is getting. I don’t think it’s contagious through the internet, but you know, better safe than sorry.
But today’s post is not about me.
It’s funny…yesterday I made a comment on my Facebook page that my house was going 100% gluten-free but did not name the reason why. Of course the assumption was that we were doing it for me. Everybody’s comments were so amazing and so supportive and a few were a tad jealous.
But the fact is we’re not doing it for me. I honestly do not mind living in a house with gluten. We’re blessed to have a big enough kitchen where my stuff can stay completely separate. I have my own counter, silverware, cookware, etc. I never saw the reason for the family to go gluten-free just because I can’t eat the dang stuff.
“Hey Dude…I thought this post wasn’t about you?!?”
I know, I know. I had to set it up. Patience Grasshopper (and yes, I’m totally aging myself with that quote.)
You see…one of my lovely Dudette’s has been hurting big time lately. She’s had it pretty tough. Whether it be stomach aches, shoulder pain, back pain, etc, she has always seemed to have some nagging physical issues.
WAIT…DID SOMEONE JUST SAY PHYSICAL???
Anyway, starting this past September, she has been suffering from serious wrist pain. Four months, 2 doctors, an MRI, physical therapy and a splint later, and she has no diagnosis and absolutely no relief. School has been a total drag because writing hurts and even worse, we haven’t been able to play ping pong since the summer. One of the docs thinks it may be Radial Tunnel Syndrome, which causes severe joint and nerve pain.
When your child is hurting and you cannot help them, it is one of the most frustrating things as a parent.
So two days ago, Mrs. Dude made an executive decision.
She is going gluten-free for two months to see if it helps her nerve pain.
In case you’re wondering, yes…she has been tested for celiac in the past and it came up negative. We may test her again. But she needs immediate relief. I’ve heard from others, including two of my close friends, who have suffered from joint and nerve pain and given up gluten and have gotten spectacular results.
The Dudette took the news like a trooper and Mrs. Dude did what she always does. She owned the situation. She removed all gluten from our house. She went shopping and loaded up on food for the Dudette. She made some amazing meals that the Dudette would enjoy. God bless Mrs. Dude.
So we’re not exactly starting off 2015 as I would have hoped. More health issues for the family.
But I see a light and the path to that light is filled with gluten-free food.
I would love to hear 2 things from the community if you can:
1) If you’ve suffered from joint or severe nerve pain, celiac or not, and have found relief, please share your story.
2) Words of support for the Dudette. She is really down in the dumps.
Many thanks…as always.
152 thoughts on “A Dudette is Hurting…So the Dude Ranch Goes Gluten-Free”
Sorry to hear you are in pain. Gluten free gets significantly easier and you have your dad to hopefully keep you from making some of the same mistakes all of us newbies make. My blood work also came back negative for years but they finally did the biopsy and yep, sure enough Celiac. It’s terrifying for sure but you have a great support system which is about 90% of the battle.
My biggest piece of advice: bring food/snacks with you everywhere!
Thanks Clare. Will pass along your advice and good wishes.
Wow I had the same shoulder, neck, back, and severe wrist pain! 7 epidurals! Then started having neurological symptoms. Turned out it was Hashimotos so I went gluten/grain/dairy free to stop the neuro symptoms but the added bonus was ALL, I mean ALL, the pain went away.
Hello Heathers, what kind of neurological symptoms did you have? Recently I have been suffering with muscle spasms and the anxiety is so bad that I can’t sleep. My mother is gluten intolerant so maybe I am too. I’m waiting for the test to come back but I hear a false positive is common.
Going gluten free for joint pain will get good results in a week.
Hello, GF Community! I just found your site on a day when I am having a lot of joint pain… From cheating with a bit of gluten yesterday. My Bad! But it is encouraging to hear some of your stories. Thank you.
I wanted to add a comment that YES — having snacks with you at all times really Really helps. There is a new online store in WA called nicerfoods.com. Their power bar is great. Good luck, Dudette and family!
i never correlated joint pain with gluten intake for myself, but I’ve always had joint problems (two knee surgeries, wrist surgery, eternal aches and pains), and still do, so I guess that’s fairly obvious. But she’s young, and if this works, it could turn everything around.
If not, well she scored in the parental sweepstakes. I am sure you guys will stop at nothing to figure it out.
Wishing you all the best.
I have had back pain here and there all my life. It wasn’t constant . It seems like it was probably at least twice a year that I would “pull it” and would be unable to stand up straight. Often the only relief was lying down. It would last at least 2 days and sometimes a week and then I would go back to normal. Gluten free – going on 4 years now and the only back pain like that I have had is one time when I know I was gluttened. 1 time .. 2 days after a significant hit.
Joint pain – I have had since my late 30’s? It initially went away completely when I went gf. Now I have it, but I am hoping it is more due to moving to a cold climate.
2 months sounds like a good thing to do.
I have talked about doing the same with both of our kids due to some issues and they have whined. Kudos to you and Mrs. D for just saying “let’s Do This”.
The great thing is you all already know what to do and what snacks are available that are awesome.
Good luck. If it makes the pain go away .. It will take all the “down in the dumps” away.
Who said she didn’t whine? 😉
Just kidding. She handled it better than I did.
Appreciate your input. Happy New Year!
Well, yes, can’t imagine her not.
Well, yes, can’t imagine her not.
Only half of my response went through. She knows you eat normal. Home should be the easy part. Her difficult time will be with her friends. Maybe she needs gatherings at your house with friends during that time. Keeping them all GF.
One of her friends is actually a celiac. And the rest of her group are just totally great kids.
Dude, low Vitamin D made my joints hurt. Today I take 10,000 units a day just to keep my D level in the 60s (normal is 80). Yes, the doctor tests the D level every 6 months to make sure I don’t go toxic.
If Dudette’s D wasn’t tested, you might consider it.
Yes! I am a huge fan of vitamin D – so much research is showing how many problem that adequate levels prevent or cure (cancer, depression, etc.!). Just keep in mind that many MD’s still think that a blood level of 20 or 30 is okay, whereas the researchers stipulate 50 as a minimum! Even before the fam went dairy free, my kids were just barely adequate at 50 b/c of all the sunscreen.
WTG! Gluten & Mrs. Dude. I think this is the best for the Dudette and hope she finds relief. I have been gluten free since October 2013 and feel great however I realize I was only looking at certain symptoms until I read your post. I didn’t realize that all of my joint pain and back pain was gone! I hurt all the time but was so focused on other symptoms I never realized all the pain was gone! I had been wondering if it was really gluten I was sensitive to or the diet coke…maybe it was a combination…anyway your posted has helped me continue to connect the dots for me. I am more convinced it’s the gluten. Best to your family,
I first read your opening as WTF 🙂
We’re hoping this is the answer for sure.
I get pretty intense ‘flare ups’ – complete with muscle spasms, joint and bone pain. I’m strictly GF but don’t necessarily correlate those two. I am also allergic to corn (among other foods). I’ve been tested pretty extensively and DO carry the antibodies for Lupus but don’t meet all the diagnostic criteria – no skin issues. Being the doctor that I am (haha), I have my own theory. I think my flares are related to corn. Corn can be in anything and everything and is extremely difficult to avoid. I avoid all the obvious ones (starch, syrup, HFCS, etc.) but also dextrose, cellulos, maltodextrin, etc. There is always a chance for slip up though because even things like lotions, shampoos, medications (even though I get all of mine specially compounded) all contain corn and occcasionally make it into you. I have only made a real connection once or twice between a flare and an actual ingestion of corn (darn salami that I’ve eaten for years suddenly started using dextrose and I didn’t re-read the label that ONE time! Grrr . . .), but I do think it may be connected. I don’t really know what to do about it as I’m certainly not ingesting corn derivative on purpose, but it’s just something I wonder about.
Good luck to the Dudette. I hope she gets some relief!
Thanks Becky. Fingers crossed.
Speaking from personal experience, yes, removing gluten can greatly help with joint, body aches and pains. 14yrs & 10 autoimmune diseases, exiling gluten from my life 6yrs ago gave HUGE relief to chronic aches & pain. I’ve had many other issues to straighten out along the way as well and still a work in progress after many yrs of damage but your dudette has the benefit of starting much younger in life. Good for her!! I pray she finds needed relief!! I also recommend one of my favorite supplements to ward off inflammation; tumeric! Find a good, clean brand, with no fillers and give it a try. Amazing stuff!! I don’t take any OTC pain meds, and haven’t for 4+yrs. Coconut oil & tumeric daily are my best friends for chronic inflammation. Wishing you and your family all the best!!
Sandy, how much coconut oil and turmeric do you use? I’ve seen this combination mentioned before, but never with an amount. Thanks!
Exactly where are there no land mines with this topic? Try Columbia U.
I guess I should say that FOR ME only getting seriously GF made the aches go away. But I’m psycho about gluten and certain it’s Celiac.
Ha! It’s been long enough now that I forgot how GF cessation made my whole body stop aching and just relax. But I’m talking seriously low gluten ingestion. Why just yesterday I had two GF potato chips; I’ll let you know how it goes.
Yes! I have found relief from joint pain by going gluten free! I was having bad knee pain. The doctor said it was osteoarthritis and to “work through the pain”. Walking up and down stairs was almost impossible. I also started having pain in my finger joints. After going gluten free these pains totally went away! The knee pain flares up when I’m glutened! I hope it works out! Good Luck Dudette!
I had a lot of joint pain prior to going gluten free & CD diagnosis. I still have some now but I still have some. Not enough to be too worrisome though!
Hopefully you feel better. But if not you clearly have a Mom & Dad who will do what they need to for you!
I feel for ya kid, I really do. I seem to live with health incident after health incident all that I get to blame on my parents because one of them gave me this fun Celiac’s – neither will fess up. (Well my mom is no longer with us, but what’s the point of having a genetic autoimmune disease if you can’t blame your parents?). I digress, I have good days, I have bad days. I’m still not entirely sure what is causing my joint pain because I have some other fun issues that are confounding doctors. But, and that is a big but, I’ve learned to celebrate the things I can do. I took up knitting after my mom passed away and it helps me with stress – if your pain isn’t too bad, it is worth picking up. I also have learned to celebrate the foods I can eat. I’m sure your folks are focused on the healthy stuff, but sometimes you need a treat, and you know what makes all things worthwhile? Chocolate Croissants. I discovered that Mariposa Bakery in CA (no, I don’t work for them, in fact I sadly live across country from them otherwise I would be eating them much more often) has mail order Chocolate Croissants. You are going through a really tough time. Make sure you have a special treat on hand to remind yourself that life ain’t all bad. And just because you are down now, doesn’t meal you always will be. (This pep talk is just as much for you as it is for me because I’ve been on bedrest for the past month and I have to remind myself that it won’t be forever.) Life is just beginning. One other thing that I’d recommend is checking out Neil Gaiman’s TED speech about making art – there is also a great print version of this that is even more inspiring – his main point is that when life hands you a raw deal, use it to make art. So those are my words of wisdom, eat a chocolate croissant every now and then and make art. Feel better Dudette. It will get better. Also, since I’m making a guess about your age (of course I’m in my 30’s and I’m still doing this), one other thing you can do that I highly recommend is do something crazy with your hair. In all my years I’ve learned that one of the only things you can ever control in this life is your hair. I have dyed my hair every color in the book, sometimes do a quick fix with colored hair spray, but mostly just have red hair with black stripes. Covers up the the grey you know. Ah, that’s it, that was my take-away, take control of the things you can take control of and you’ll feel a bit better.
Good luck! We are all pulling for you. And thanks for making me want to order more GF croissants. 🙂
– Meg from the DC area
After being diagnosed with celiac disease I realized that the joint pain came way before the stomach issues and eventually, the dermatitis herpetiformis. When I was in my teens I started experiencing horrible back pain. It was so bad that I would find myself unable to participate in PE or after-school sports. The doctors did X-Rays, MRI’s, blood tests for RA, etc and came up with nothing. They decided to just prescribe pain meds and call it a day. Fastforward about 13 years and all of a sudden my whole body felt like it was falling apart. I couldn’t bend over without my knees or elbows without experiencing horrible sharp pains. It was also around this time that the stomach issues, rashes, horrible anxiety, fatigue, and brain fog set in. I eventually came across the web page of a fellow celiac upon reading her story knew without a doubt that gluten was the cause of all of my issues. I told my doctor to test me and it came back positive for celiac. Once I went on a gluten-free diet the joint pain immediately subsided. The rest of the issues took a little more time. Good luck and a speedy recovery for little dudette!
I realize this is a super old post, but how long did it take for your rash to go away? Your story sounds very similar to me. Am so itchy and really want this rash to go away…
Dude – Joint pain was what finally got me my diagnosis. I’m in my early 30s and was having issues walking down the steps without pain or feeling like my knees would buckle under me. My hands, wrists and even my feet ached. Doc thought it was Rheumatoid Arthritis. Because I was having stomach issues as well, he tested for celiac too (thank God). Turned out to be off the charts celiac (had the endoscopy to confirm). Since I’ve gone GF, I have no pain. Good luck to Dudette!!
I really hurt at hips and knees before GF . I am sure you know that excercise is still her best friend. Emotionally and physically. Maybe time for a dad and daughter 5 k walk run or something like that. Seems trivial but setting a goal that does not include food seems to help.
Best warm hugs to the family,
We met our neighbours two years ago and they invited us for dinner. I had to ‘splain that I don’t eat at strangers houses. Much to my surprise, they said “HEY! No sweat! Diane doesn’t eat gluten either!” And I thought OH. One of those. But as it turns out, she had awful arthritis and joint pain that really resolved itself when she went GF. We have now shared MANY lovely GF dinners over the years 🙂 So first hand, I know someone in terrible whose life improved dramatically after going GF and I hope it works out for the Dudette!
I went to doctors for 4 years with joint pain and no relief and then was finally diagnosed with Celiac Disease a little over a year ago. It took 5-6 months for the joint pain to get better but it DID get better! My hip that was keeping me awake and both feet right behind my toes are all pretty much 100%! My shoulder still bothers me if I move it wrong but I can live with that and I still have hopes that it will also improve. Anyway, good luck with the GF diet Dudette! If you aren’t better in 2 months don’t give up! Like I said, it took 5-6 months for me! (But I’m old! Even a bit older than your dad!)
P.S. Vitamin D & Magnesium may help too!
Yes, most celiacs are probably deficient in Magnesium. It is not to be overlooked. It is involved in so many processes in the body that deficiency really affects you. Insomnia, depression, etc. I just started taking some and it is helping me sleep better. I have to be careful though because it lowers BP and mine is already low.
So glad to hear you say this! I keep looking for someone to tell me it might take longer bc I’ve been gf since mid-November and still gave this horrible back pain. I was losing hope that my celiac dx at 45 was going to be my solution. You’ve renewed my hope! Thank you!
Yes, going GF helped my joint pain.
Dude and Dudette,
I initially went gluten free because I was suffering from really bad joint pain. There were other symptoms too, but at the time it was the joint pain that had my attention (it was starting to freak me out ) and had me looking for a solution – in my case, if I sat for a while and then got up I could barely walk. In the mornings when I got up I had to hang on to furniture in order to walk. Once I went gluten free it was like night and day, I could get up from my desk at work and not even think twice about taking a normal step! In the morning I didn’t have to hang on to furniture to get around the room! Before I realized it, I was sprinting up the stairs! So yes I definitely found relief for my joint pain.
Dudette, I know it seems like suddenly you are in this box where you can’t have this or that, and maybe a little overwhelming to suddenly have to stop and think “does this have gluten?” before you eat something but how lucky you are to have a mom and dad who’s right there with you, just think of the good times with your dad laughing over “gluten free” water at the store or other silliness 😉
I will tell you this, my daughter who doesn’t need to be GF prefers GF bread (Canyon Bakehouse mountain white) for her sandwiches…. 🙂 I guess what I’m saying is that while at times living GF can be frustrating, it’s not the end of the world and there are so many good GF choices, and if it helps you feel better then it’s more than worth the extra effort!
And definitely what Clare said, keep GF snacks with you. I found some really good GF protein bars that I take with me when I go some place that I’m not sure will have something I can eat.
For several years I suffered with terrible joint pain, especially in my knees. It was getting to the point where going up or down a flight of stairs was excruciating. The hot, throbbing knee pain would interfere with my sleep. Living gluten free since celiac disease diagnosis in May 2014, my knees no longer hurt. I am back to walking 5kms (that’s 3 miles) almost every day, and working at my part time job, where I am always on my feet. It only took about 6 weeks for the knee pain to resolve. Several of my other celiac symptoms continue to plague me, but the inflammation in my joints is vastly improved. I take no medications or special supplements for joint pain or inflammation.
I wish Dudette huge relief from her symptoms, and patience with adapting to her new lifestyle. I applaud your family for taking such a big step and for supporting Dudette so wholeheartedly. Best wishes to all.
First, support to the Dudette! Thankfully, she has a family who knows about gluten…you think?!! 🙂 My daughter was 8 when she was diagnosed 2 years ago. She is thriving, and I work hard to make sure she’s not missing out on food choices. There are 4 kids out of 38 in her grade that can’t eat gluten! Please tell the Dudette she’s not alone. 🙂
Second, joint pain and body aches were one of our many symptoms from gluten. Reading about others really helps me, so I’ve started a blog to share our stories hoping to help others too. You are a pioneer in the gluten blogging world…thank you! Please share this post on body aches with Dudette, and our best to you and your family! http://bit.ly/14nOnsX
My husband’s cousin’s 9 year old came back negative on blood work, positive on the gene, so they did a biopsy. It was positive for CD.
For me, personally, I had so much joint pain they ruled it as fibro. Unfortunately, a lot of damage was done in the meantime: arthritis set in, nerves damaged, etc. 40 years of poisoning my body unknowingly I’m sure had a lot to do with it.
But it’s funny you mention wrist pain. Mine was so bad I had to drop out of college art classes. And I was good at it! I went to doc after doc about my wrist. You wouldn’t believe all the different diagnosis I got. But GF 1 year later and I still have wrist problems. Last doc I saw 2 years about it said it was related to my ulnar nerve.
For dudette, going GF and giving up your favorite foods suck. But almost everything has a good alternative. Plus, you have an experienced person helping you. Most of us didn’t have that. It’s also a plus how young you are. As you get older it gets harder to do this. Best wishes to you.
I had a LOT of joint pain before I went gluten free. It still comes back if I get glutened. Hoping going gluten free helps her 🙂
So sorry to hear about the Dudette. I was diagnosed 5 years ago with Rheumatoid Arthritis, so chronic joint pain is a specialty. 🙂 Roughly 15 months after I was diagnosed, I went gluten-free, and within weeks, I saw a significant improvement in my swelling and pain levels. The daily grind of any chronic disease is tough though, and mine is the stubborn “doesn’t respond well to medications” kind. The adventure continues, but dropping gluten and processed foods completely from my diet has absolutely improved my joint health, and well, my health in general.
Your experience will certainly be a big help to her on her journey, and I hope she sees major improvement in the coming months. Thanks for everything you do for this community. I wish her, and all of you, a happy 2015!
Oh yes I’ve had lots of joint pain!! In fact I have had the nagging will not budge wrist pain too…in both wrists. It was so infuriating. I couldn’t do my beloved yoga. This was before I was encouraged to go on the diet. If I am super strict and stay away from the gluten at all costs, I have little to no muscle or joint pain. If I’m loosy goosy with the diet, well it’s the opposite, I’m in chronic muscle and joint pain.
As a child I suffered from intense “growing pains”. That’s all anyone could call it. In my teenage years I had joint pain mostly in my wrists. After sending out graduation announcements I couldn’t write for a week. Splints, X-rays, you name it, no answers. It was labeled as tendinitis, then was told by a chiropractor he thought carpel tunnel and should have immediate surgery. I didn’t have surgery, and eventually the pain subsided. Have delt with joint pain all through my twenties and then Migranes started. In my thirties the pain intensified, with muscle spasms all over my arms and legs, and I started having GI issues also as well as serious fatigue. I was put through a full body MRI, Celiac blood tests, testing for MS, RA, Lupus, etc all negative. My rheumatologist suggested I remove gluten from my diet for 21 days. Each day was a little better, within 6 mo I was almost pain free. Two years later I only suffer if I’ve been glutened. My family eliminated gluten from the house because I kept getting cross contaminated. My two boys also eat GF all the time. My youngest suffers with GI and upper respiratory issues when eating gluten and has been tested for Celiacs also but he had the scope, Also negative. His gastroenterologist suggested he remove gluten and dairy from his diet. He went from being sick every other week, to the comon cold now and then. The first 3 years of his life were a mess. My oldest has severe constipation and randomly complains of leg pain. I switched him over and has helped him too. Likely more than you asked for. 😉 Good luck to your dudette!!
One of my first signs of trouble was wrist pain. It was so infuriating. I couldn’t do my beloved yoga. Long story short, if I’m super strict with the diet, I have little to no muscle/joint pain but as soon as I start slacking and not being as careful about “contamination” it ALL comes right on back.
I had serious joint (shoulder, wrist, knee, lower back) problems before I gave up gluten. Tell the dudette that it DOES get better! Taking bromelain and tumeric helps me a lot. I always know I have been glutened when I wake up with stiff arms and legs, or have wrist pain (like what I imagine carpal tunnel feels like).
I had moments I couldn’t even walk, because of changes in the weather. Now? I may feel a little uncomfortable at times but it is usually tolerable. I should note this pain started in my early 20’s, so I wasn’t exactly an old lady! Haha 🙂
Dude, How long ago was your daughter tested for celiac?
Not long ago. In the past year.
Okay, good. Just making sure 🙂 Just as an FYI, the U of Chicago folks recommended last month that all “high risk” kids get screened for celiac every 3 years starting at age 3, but obviously sooner if any symptoms develop.
I have Celiac. And I have five kids. I was diagnosed in Oct. 2013 and I immediately knew I wanted my kids tested. And I knew in the back of my mind which kid might come back positive. My 12 year old daughter has always had weird vague symptoms. Years of JOINT PAIN in her knees, insomnia, fatigue, etc… The doctor always dismissed it b/c it wasn’t severe, but I knew something just wasn’t right. And it was getting worse. Her Celiac blood tests came back positive and an endoscopy confirmed it. She has Celiac Disease just like me.
Since giving up gluten she is a different kid. It took a few months, but so many of her symptoms have improved or disappeared. It’s been exactly a year. She has been accidentally glutened about three times and her immediate symptom is joint pain and headache. No stomach issues. Her joint pain gets so bad that she can hardly walk. It’s pitiful and sad. It’s amazing that gluten can do that to her joints. We are so happy for answers. We could have spent YEARS trying to figure it out. So, I am thankful for my diagnosis b/c it led to hers. We are on the road to recovery and healing. Best wishes to Dudette! I really hope this is the answer for you and find relief!!!
And I will add that the biggest hurdle for my daughter is social situations. Birthday parties, school activities, slumber parties, etc…. that center around food. I am always sure to send her with GF food, but it’s hard to be the odd man out. Her friends are very understanding, but it’s still hard for a kid to be different. Eating GF at home is no big deal, b/c that’s how I eat. That isn’t the hard part. But the social eating for a 12 year old is pretty tough. It sucks. And I let her vent and sometimes we just whine together and then we move on.
I suffer from chronic pain, joint, wrist and nerve pain, lymphedema in my feet, All are tied to injuries and accidents. I have tried the secret to life loaf and glutton free muffins, which I really like. Vitamin D sounds good, I am not glutton free, but am MSG allergic and spicy foods. Digestive issues from processed foods. I get relief from chiropractic treatments. My back was twisted and my elbow and wrist were out of joint. My whole body relaxed after that and I felt better than I had in a long time! No amount of eating right, exercise, etc. would have saved me! Daily Stretching, down ward facing dog yoga pose to stretch miofacial tissue alleviates chronic pain, cat stretches, and anything else you can stretch!
Hang in there Dudette! Life overwhelms for awhile but it will get easier as it gets more familiar. And you have your whole family supporting you which is a gift not something we should feel guilt over. Maybe you don’t feel bad. I just know sometimes I feel bad when my family makes big changes for me and my diet.
I didn’t realize how much joint pain I had until one day about two months into GF diet I realized I no longer ached when I woke up in the morning…
I have pain in just about every joint in my body–hips, shoulders, elbows, hands, knees, feet, etc. Also a lot of morning stiffness although very few GI issues. I was diligently gluten-free for a month and didn’t notice any difference. I am thinking I wasn’t GF long enough. After reading a lot of these comments I am back on a GF diet and will give it at least six months this time.
GF is relatively easy for me because I’ve never consumed all that much gluten-containing food to begin with, but we do eat out a lot because I’m frequently unable to cook due to pain. Fortunately more and more restaurants offer GF menus. Of course, you are trusting the kitchen staff not to screw up. I usually order something very simple such as chicken or a small steak (seasoned with only salt & pepper) and a side of veggies. I don’t get concerned about cross contamination at this point. Plenty of time to worry about that if what I’m doing doesn’t work.
GF for 2 months. Joints haven’t healed yet, but have improved. I can no longer fry an egg on my shoulder.
If gluten is the devil, then dairy is the devil’s companion in my case. It is terribly difficult to give up all that oh-so-cheesy-goodness that is pizza or a turkey and swiss, but when I do away with dairy, my joint inflammation and the accompanying pain magically disappears. Ultimately, I feel much better staying strictly gluten free, and mostly dairy-free (soy-free, sulfite-free, and msg-free, too). Dudette, while we often have to make huge sacrifices to feel better, one thing we don’t have to give up is our books! Best to you on your journey.
The fibromyalgia I was diagnosed with 20 years ago primarily started with my wrist joints (knees and elbows to a lesser extent) – they checked every way to Sunday for carpal tunnel before figuring it out. Since going gluten AND dairy free 3 years ago, I have practically “cured” myself (but still apparently still retain those indicative “trigger points” that say I have fibro). With the experience of 3 years, now, I find it is actually the dairy in quantity (say, absolutely boatloads of yummy buttered green beans when it was the only thing gluten free at a catered event) which revisits the common complaint of a fibro patient of being hit by a mack truck – for days (small amounts of gluten just makes me want puke – I hope I never need to prove it to a doctor by eating a whole slice of regular bread – I’m sure their shoes would be in the line of fire). It’s the whole “but you don’t look sick” thing all over again. I talked to someone who had a friend with fibro who’d tried GF to no avail, but when they also nixed dairy, that was the answer. I also read a scientific study online about WHY GF helps people with rheumatoid arthritis, and my allergist has an RA patient who went GF and was able to ditch her meds. I never had the RA blood markers, but it has been miraculous for the fibro.
You know, I hadn’t though about it, but I’ve only worn my wrist brace ONCE since going GFDF (when I actually sprained it a bit)! Others here mention wrist problems, so I’d like to add more on that. After having my first baby 13 years ago, my wrists were still retaining water terribly post-pregnancy, so had new-mother tendonitis. With my 10 pound newborn in tow, I saw a snooty orthopedist who said he couldn’t do surgery b/c I was breastfeeding. Naturally If he’d been any good he would have sent me for PT. So after doing some research and getting ready to try standard PT techniques at home for tendonitis before asking my OB for a referral, I mentioned the whole thing to my excellent chiropractor (who got me through both pregnancies with no back issues). She said, hmm, there are 7 bones in your wrist, I can adjust them (at that time in Michigan she wasn’t actually “allowed” to adjust wrists; it’s since changed). Now I’ve been a proponent of chiropractic forever (always said I’d be a cripple w/out chiropractic and massage, though this was more true prior to GFDF), but it helped OVERNIGHT! You could have knocked me over with a feather. After another couple adjustments I was all better, and with regular treatments my wrists are better than they ever were in my 20’s and early 30’s (they used to “zing” if I opened a door, etc.). Now I did also have a PT tell me I had sort of “loosey -goosey” wrists once, so that’s part of my individual body idiosyncrasies. They’re not perfect – some days it’s hard to sustain a down dog, but dang! they’re not awful. So I always tell anyone with wrist issues to try this as well – you never know if you’re going to be one of those folks who will be helped by increased blood flow to the wrists.
I hope you figure out what helps your Dudette – it’s wonderful for her to have such a supportive family. Sorry this is so long….
Oh, Dudette. That’s hard, honey, but it’ll get easier.
I went GF almost primarily BECAUSE of joint and muscle pain. I’ve never been diagnosed with Celiac, mainly because I went GF before I got tested, but there’s no way in hell I’m doing a gluten challenge. I can’t face that level of pain again, it was awful. I had a chronic limp, had to take stairs one at a time, couldn’t sleep at night because my legs and hips and back were so bad. Looking back, I had symptoms reaching into my teens. I wish I’d known to go GF two decades ago, maybe I wouldn’t feel like I spent my 20s and 30s as an 80-year-old woman.
It might not mean much now, but going GF might change your life. Hopefully you’ll never have to meet the sick you. Hopefully you’ll leave her behind early on.
I went GF fully last winter. I can now RUN up the stairs.
I too had joint pain all the way back to childhood. I used to get growing pains in my hips and legs something fierce. I couldn’t have been more than about four, but I can vividly remember how much it hurt. I also didn’t have the energy or muscle strength my friends had, as a teenager. I always wondered why. Gluten sensitivity was unheard of back in those days. The docs just said I would outgrow it. Well, I sort of did and sort of didn’t.
There was a time, in my 30’s and early 40’s that I did sports, although I never excelled. I was sort of an athletic klutz with little agility. I skied but I also fell a lot. Those injuries, although long healed, have since come back to haunt me. I’ve heard gluten can do that. I am embarking on a second, longer effort to be totally GF/DF. I’m no spring chicken so it could take longer. I hope it works. I’m so tired of having everything hurt and going to doctors who don’t have a clue.
I have been gluten-free (celiac) for three years now and my biggest issue is wrist pain. It started after going gluten-free. Have been told it’s due to fibromyalgia or carpel tunnel. It comes and goes one wrist both wrists comes with muscle weakness as well sometimes I can’t turn a door knob or pick up a jug of water. When it’s at its worst I put on a wrist splint. I have found relief from a chiropractor who specializes in ART, that seems to make it go away for a while if I continue to see her. I saw a functional medicine doctor who had me do cyto toxic blood testing. I had to cut out the 16 foods it came back on the blood test for six weeks and start adding them in every couple of days. Well off of those foods I did find relief. Not sure which food is causing the issue. But I am convinced it’s food related. It would be impossible to not eat any of the 16 foods forever, but I need to figure out which one/s are the triggers. I suspect either beef, corn, tomato or fructose. I feel for the dudette because wrist pain is really hard to deal with. Have her try the ART. After a few treatments she should feel some relief. It also got rid of my planter fasciitis in my feet.
You may have dated yourself a bit with the Olivia Newton John clip too. Just sayin’. But I suppose I also just dated myself by pointing that out. 😀
Sorry to hear about the Dudette’s issues, but I hope that going gf will help. It’s very hard to see your kids suffering. I had my son tested at 18 months (which may have been too soon I know) and it was negative. He’s 3 now and I still suspect he has issues with it and know that we will probably have to do a gluten challenge one day. I’m not looking forward to it.
On an up note, my joint pain was one of my worst symptoms when I first got diagnosed and one of my biggest clues that I’d been hit. I haven’t had a trace of that in about a year now. I hope the Dudette’s issues are something easier to deal with, but if not, at least she has the benefit of your experience and the awesome Mrs. Dude to cook delicious, safe meals for her. Wishing you ALL health and happiness in 2015!
I feel for your daughter! Thank heavens she has an incredible support system between you, your wife, and even this community. Eating gluten did cause me a lot of joint pain and swelling. I also had problems about once a month with nerve pain on one side of my face. It was never officially diagnosed as being due to CD, but the problems mostly resolved after going gluten free. I am also allergic to corn and that has caused some joint pain as well, but the tie between gluten and my joint problems was very clear to me. My two cents on the celiac test coming up negative: I think it is a mistake to wait to treat gluten intolerance until it has resulted in celiac disease and that it is a shame doctors only acknowledge the health issue when it has reached that critical point. Good luck to your daughter, I hope this makes a clear difference for her.
I had major joint pain and carpel tunnel like symptoms in my right wrist and hand. Once going gluten free it all pretty much disappeared. I do still have some minor hurt in my wrist now and again, but I do use the computer alot without proper form. But I no longer have to wear a brace on my wrist and I have only had to use it again when I have been glutened.
I hope the dudette gets to feeling better 🙂
Reading this made me realize that when I was just recently “glutened” by the rice flake cereal, I was having back pain – and now that the “glutening” is subsiding, the back pain is gone.
But yes – before being GF I had terrible hip pain so much that it was difficult to walk. Also in my knees. And even in the years prior to that, I would have joint pain in my wrist and hands quite badly. Now it’s all gone – and I’m old enough to have some joint pain just from aging – but I really don’t have any. Just some odd aging kind of snaps, crackles and pops when I get up from sitting too long sometimes…
I am 22, celiac with hypoglycemia. My whole house is gf. I essentially have so many allergies that I just eat meat, veggies, and fruit. I had to cut out milk and coffee recently which was a huge bummer when I’ve already cut out so much. I got glutened the other day because I decided to let my godparents feed me on Christmas and something got cross-contaminated. Luckily I react instantly, so before the third bite i was unable to really talk or make eye contact and my arm was going numb. I managed not to burst into tears for once, and seemed like I was doing somewhat alright when I was going home, although my brain was still slow and I could only talk very simply and haltingly. Luckily my parents had picked me up, so I didn’t have to drive. That would have been really dangerous!
Anyhow, I made filling for a paleo pie crust my friend brought over (she keeps her house totally gf for me!. All the ingredients should have been fine aside from a teeny smidge of egg (1/32th of an egg per slice!) I thought perhaps I felt sick after the first slice, but thought it was probably the gluten from the day before. Had a slice the next day and realized the pie was making me sick. Gradually progressed to diarrhea in the days following and general fatigue, feeling quite nauseated, migraine, upper back/shoulder pain, numb on the outside/achy on the inside arms, and painful wrists on and off. Now the inflammation in my back is so bad that it feels swollen and is warm to the touch – and it’s been like that for three days! The circulation in my feet is poor again which hasn’t happened in a while…
Basically I keep getting worse and worse and it’s been over a week since I got glutened now. I’m suspicious of something nerve related after doing my research. All the signs point to peripheral neuropathy.
I already take tumeric or make tumeric tea to manage my inflammation, but it’s just not enough anymore.
I’m considering trying the Autoimmune Protocol, because I’m already halfway there, but it’s going to be even more expensive than the $400 i spend on food pretty month and I’m trying to figure out I’m going to afford health insurance that won’t help me 1 bit because the deductible is ridiculous, and yet I have to do it because Obama… :/
Not to mention that doctors have done me a lot more harm than good.
Okay rant over! I really hope dudette starts feeling better! And I’m interested in any advice on managing nerve pain as well.
Hi Dude. I am sorry your daughter is hurting, but I am so happy you all are supporting her. No doubt this will help everyone. Your family sure has been through a lot lately, I’d be remiss if I didn’t express care for your the Mrs.
I got sick January 2011. Crohns was suspected, then chronic pancreatitis, then diabetes, then neuropathy, finally celiac. I wish gf had made me feel better, but it hasn’t been until recently that I do finally feel better. I am doing a doctor ordered virtually carb free, no processed food, no risk of cross contamination diet. I have to do this for 365 days for the nerves to heal. My rheumatologist(also a celiac) said it takes one year for nerves to heal.
I sincerely hope she gets better, and that her pain is relieved. As a child, I see the pain my pain has caused my parents these past four years. If there ever was a reason for me to do everything in my power to get well, it’s for them. I am sure the dudette feels horrible you have to watch her suffer.
Big hugs to you all!
It looks like you’ve received a lot of great advice! I suffered with similar joint and especially wrist pain before being diagnosed Celiac. When I went GF it helped for a while but slowly the pain came back (3 months). I found out that I had Enteropathic (stomach related) Arthritis which is obviously triggered from having stomach (bowel) issues. This is a link to some info about the types of pain you can have with this, but if she’s having stomach issues along with the pain it might be worth a look: (http://emedicine.medscape.com/article/334746-clinical) My doctor’s prescription was NSAIDS and steroids (both are terrible for healing the gut). My prescription has been going grain free and using Essential Oils for the pain and I have been able to substitute my daily pain meds with 3 oils Valor, PanAway, and Copaiba. These are from Young Living Oils but other oil company’s have their own versions of pain substitutes that work well for joint pain. Hope the info helps.
My cousin used to eat “gluten light,” hoping it would help with long-term pain and severe inflammation in a specific area of one hand. After I was diagnosed with celiac and shared some of what I learned with her, she went completely gluten free. She called a month later and was ecstatic – all the pain and inflammation had subsided. One GF year later and her joints are still in good shape.
Hang in there, Dudette! So many of us here know how frustrating it is to feel unwell and have limitations but no answers. Fortunately, you have experienced and resourceful parents to support you. Keep your chin up, stay positive, and hopefully you’ll be pain-free and killing your dad in ping-pong in no time!
Before I went GF, I had pain in my knees so severe it woke me up at night, bc it felt like knives were being stabbed and wedged into me every time I moved or bent them. I was all of 23 years old and felt about 96. Post-GF, I am a runner! 😀 So, there is hope for you.
It’s tough what you’re going through, and it definitely stinks, but you can do it. Sure, cake is tasty and eating meals on the fly without worry is something most take for granted, however you’ve got the bigger picture already in your head, and that puts you ahead of those ‘most’. You already know that amazing truth that what you put in your body makes it run well, or can seriously hurt it – that’s the same sort of thing athletes have to think about all the time. How many of your peers – or even adults! – have that knowledge? You’re ahead of the game and making healthy patterns for your whole life; you don’t forget knowledge like this. You’re smart, courageous, and curious. You’ve also got fab parents, friends, and us weirdos rooting for you! You can do this! XOXOX
Hi Dude and Dudette,
When I was first diagnosed with celiac I suffered from horrible joint pain along with a bunch of other symptoms. The joint pain was the worst! My hands and arms were in constant 24 hour pain. Going gluten-free did help alot! The pain was still there but way better! What completely helped my joint pain was when I found a doctor to recognize my thyroid problem. Now that I’m on the right medication my joint pain is for the most part gone! I am not sure if her thyroid was checked but it is worth getting checked out. There is a light at the end of the tunnel! Trust me! Hang in there Dudette!
To both Gluten Dude and Dudette,
I was diagnosed with fibromyalgia in 1999, another one of those, “doctors don’t believe anything is wrong with you” kind of disorders. But as a hair dresser for 25 years, I have the added plus of having thoracic outlet syndrome and resulting carpal tunnel syndrome in my right shoulder to wrist. No one ever said try other things like diet, massage, or any number of holistic therapies. It took my daughter getting diagnosed with Celiac for us to go gluten free. It made no sense as a single mother to do it any other way.
Now I believe that the less swelling that occurs in my body, the better my nerves and joints feel. Wheat and grains can cause swelling in prone areas for sure. Fact. Sugar also has a direct correlation to my joint pains as well as nightshades. Just some things you may want to pay attention to and try. Tumeric helps, and my palate loves Indian food for it.
Massage is my best medicine and soothes my joint pains. I go to one trained in neuromuscular and athletic injuries and the relief has been immense. So I felt it would help my daughter too. Sure enough, she has been getting massages since she was 6 years old and it helps tremendously with her health as well. She used to get incredible “growing” pains that were completely eased.
Good luck to all of you and much health,
Hi Dudette! You have wonderful parents who will get you through this to find an answer! Stay strong!
Gluten Dude: I have rheumatoid arthritis, mainly affects lower back and knees, i have a mild/moderate case and pain level. However, gluten totally aggravates it and the pain can get unbearable. I avoid gluten by choice, but do have small amounts occassionally. If I over indulge for a few consecutive days, I will wake up almost unable to stand up straight! And as soon as I eliminate it from my diet again, within 3-5 days I am back to normal. Amazing at how destructive gluten can be. So it definitely does affect joint pain. Hope you find an answer and solution for the lil’ dudette quickly!
Sorry dudette isn’t feeling well. Going GF just might change her life! I went through years of joint pain, a brace on my knee when walking, hip pain, wrist and elbow pain, pins and needles in my hands, I felt like I was trapped in a seniors body. That is all gone! I now run, without a brace and feel great! Good luck and be well!
You’ve got this Dudette!! It’s ok to be down but know these journeys make us stronger. I have so much power and strength I never thought existed inside myself before I faced these diversities. I have always been the sick child of the family. Something was always wrong but the symptoms never fit together. When I was 21 my body shut down on me, aside from my “norm” strange symptoms…suddenly my body felt like I had the flu DAILY. Aches from head to toe, you couldn’t touch me without pain. I was almost bed ridden when I seeked help from my doctor. He told me I had fibromyalgia and gave a list of things he could prescribe. He didn’t dig into the roots of my problems and I couldn’t accept the fact that I would feel this way forever. I took my life into my own hands and researched for months. A year ago after trying everything I went 100% gf. Two weeks later I felt like 100 bucks compared to how I was. I am still healing and if I get cross contaminated it doesn’t take long for the pain to return. Keep your head up and know that there’s no amount of anything that is worth living with pain! I am 25 now and feel alive again and I know you can too!!
Adversities*** gotta love autocorrect
To GutenDude and Dudette: I wanted to add my husband’s experience with going GF and the positive results. We are in our sixties so one expects certain aches and pains. But two and a half years ago my husband could not walk without a cane and even short walks were torture. He had already had two shoulders replaced and his knees and hips were a constant source of pain. He was constantly taking Advil with minimal relief. We made the decision to go GF for reasons other than his joint pain but within six months he was beginning to feel better, less pain, more mobility. Two and half years later he no longer needs a cane, can walk for at least two miles without hesitation and the need for knee and hip replacement is no longer an issue. As a matter of fact we were just talking the other day that if we had not gone GF he would probably be using a walker and a wheelchair would be on the horizon. I did not have his joint pain issues but I feel soooo much better than when we ate gluten so we have no plans to return to that way of eating.
Social situations can be hard but we have learned to adapt. We are so lucky to have supportive friends who don’t mind when we bring our own food to parties and picnics. We have also found several local restaurants that really “get” GF. It’s not easy as you know but the health benefits are worth the work. Good luck!
Joint pain, not so much.
Nerve pain, enough to have two doctors diagnose me with fibromyalgia before I was 25. (I wouldn’t let them put that on my chart.)
Muscle pain, constantly. I was suffering with chronic systemic muscle spasms, possibly because my body couldn’t absorb magnesium, or maybe it had sent my nervous system into shock. It may not sound like much to some, so imagine having a cramp in every muscle in your body 24/7/365. It was my life. Even having weekly massages only helped marginally. The constant pain and fatigue was mentally draining. I’d been told for years that there was no explanation, that I was just lazy or making it all up.
My massage therapist got frustrated with my lack of progress…and with himself for not doing something right. I’ll never forget the day he looked at me and said, “You’ve completely stopped improving, and it’s not localized. It has to be something systemic causing this. You know the three possible causes.”
“Dietary, environmental, or psychosomatic. I know.” (I’m a massage therapist myself.)
“Look into it…for both of us.”
I dove into research mode. I had already started to lean towards gluten as a potential cause of my problems, even things I hadn’t thought of, such as my depression and hypothyroidism. Then I came across this article (http://www.nytimes.com/2011/11/13/magazine/diagnosis-hurt-all-over.html?pagewanted=all&_r=1&). It fit, sounded almost exactly like what I’d been feeling for over a decade. I decided to skip the doctor and go gluten-free for just 30 days to see if I felt a difference.
Three days into it, I had more energy. The pain was subsiding, and quickly. I felt lighter than I had in years going into my massage therapist’s office. Getting off the table, (we always worked with me fully clothed) I asked what his take was.
“When you came in here today, your muscles felt the way they normally do when you’re leaving. I think you found your answer.”
I was well on my way to a healthier me. It’s amazing the difference I see in myself. (I’ll add my before and after pictures. http://instagram.com/p/xj7JP4v9V3/)
Another possibility: potatoes, especially if they have green skin, eyes, sprouts, etc. This Snopes article gives a good overview, and points out that children should not be fed green potatoes: http://www.snopes.com/food/ingredient/greenpotatoes.asp
Other nightshade plants (e.g. tomatoes, peppers, eggplants) also have solanine – if the 2-month gluten-free trial doesn’t help, it may be worth eliminating nightshades for a while. Here’s a good summary on nightshades, solanine and inflammation: http://haydeninstitute.com/additional-resources/additional-resources-diet-and-nutrition/inflammatory-foods-nightshades
Hey there Dudette,
We have the same “happy place”! I really can’t add any advice to what’s already been said, but remember there are lots of us out here that have been in your shoes and are hoping your pain goes away!
And to The Dude,
As much as I will miss my daughter when I become an empty nester next fall, I look forward to a G Free HOUSE!!!
I suffered from joint pain for over 20 years before I got my Celiac diagnosis. My entire body hurt all of the time and I assumed this is how everyone in the world felt. It wasn’t until I was 100% gluten free that I finally got to understand that it was not how the rest of the world felt. It is amazing. I feel well now for the first time in my adult life. Since going gluten free, my sister and mother have also switched to gluten free. My mother who suffered from arthritis and joint pain no longer does. And, she does not have Celiac. Just goes to show that gluten can and does cause inflammation in joints and muscles. I wish more people would try this before jumping on the prescription drug bandwagon. More often than not it is directly diet related. I’ve seen it many times in friends, family and support groups. We as a country need to begin looking more carefully at what we eat before deciding to take pills that may actually make us worse. This is my experience.
Also, I truly hope you get feeling better soon Dudette! I wish you all the best for health and happiness in 2015!!!
My partner at work (I’m a paramedic) had severe unexplained joint pain in his knees that eventually landed him in the ER because he couldn’t walk. Eventual diagnosis – Crohns Disease. No family hx and no real intestinal symptoms. He did not go gluten free but eliminated several things that turned out to bother his system (dairy, leafy greens, seeds) and now takes medication and has had no problems. None of us had ever heard of joint pain being a symptom of Crohns but it is one of those obscure symptoms that doesn’t necessarily correlate to something specific. He is doing much better now.
I must thank you for your blog and all the information and encouragement and REALITY CHECKS you put out here. I have Hypothyroid and went gluten-free in September on my doctor’s advice. It has made a huge difference in how I feel – most surprisingly – almost* eliminating my migraines that I’ve had for years. Unfortunately there is still much ignorance out there, especially when people find out I am do not have Celiac, the general assumption is that it is not that big of deal because I’m not *really* allergic to it. Thankfully I have an awesome supportive husband & son, extended family and my work family has been great too – I live there 1/3rd of my life.
Good luck to Dudette, I hope she finds the relief she needs, however she finds it.
My joint pain used to be absolutely terrible! It showed up a lot later than my other symptoms, probably when I was 18 but other than my headaches, it quickly became the worst symptom of them all. It got to the point where I had to run my hands under cold water multiple times a day or have a cold drink nearby to wrap my hands around. I couldn’t sit for longer than a few minutes because of my knees (and I was just starting college trying to get a degree for a desk job!). I even started going to sleep with ice on my knees to help with the burning and aching. The good news is, I have zero joint pain today! If I get glutened, the pain will come back immediately and sometimes gets to the point where I have trouble walking. I know everyone’s symptoms are different and respond to different things but the last 2 times I got glutened, I pulled out some bone broth I always keep in my freezer. I sipped on that and the single symptom that disappeared was the joint pain. it came back both times once I ran out of broth but when I had it, it was a great relief! I would definitely recommend trying bone broth to help with the pain to see if that works for you too. Also, be patient while your body heals. I know how frustrating it can be to be in pain all the time and I was fortunate to respond to the gluten free diet so quickly but sometimes, it can take a lot longer. If gluten is the problem, I promise it is worth waiting it out!
One of the reasons I decided to go gluten free was the fact I heard on a wellness seminar it could have a dramatic impact on joint pain, among many other symptoms I was having at the time. My joint pain was debilitating a good part of the time, always there and no one could tell me why. I knew I had osteoarthritis that is weather sensitive. When the air pressure changes my joints hurt. That pain had increased many fold and it was constant. More painful, at times it would make me cry out when I moved. As the seminar speaker described the possible symptoms of celiac or gluten intolerance he could have been describing me. I was already eliminating the common allergen foods from my diet one at a time for two weeks at a time with a week of normal eating in between each two week period. That week was spent researching all the various names etc of the food I was going to eliminate next.
Within 3 days (yes only 3 days) of stopping all the gluten the pain was dramatically less when I got up and stayed gone all day. It was like a miracle to me. I feel so much better all over. I have energy again. My stomach is not upset all the time, I am getting the feeling back in my hands. I have my life back. An extra bonus to all this is I have lost over 30 pounds since October 2014. I no longer feel all puffy since my body is no longer producing all the antibodies to get rid of this bad substance.
Please wish your Dudette well from me and tell her the pain will go and stay gone. It took about a month to six week before I was always pain free.
I want to thank you for helping me especially when I first started. Your information was invaluable.
First…love getting your emails/posts on facebook. My 11 yr old daughter has celiac. She was diagnosed at almost 6 years old. Like any OCD parent, I dove into research and she went 100% gluten free. Of course, being the supportive parent, I went 100% gluten free along with her. While researching the gluten free diet, I came across several references to the GF diet helping reduce inflammation. It also referenced a lot dealing with hashimoto’s thyroiditis, which I have. After going GF, the joint pain I had been living with daily all but disappeared! I mean, I had a lot of old injuries from being a competitive gymnast..knees, hips, shoulders, etc.. daily pain level was usually about a 6. It went down to a 0 or 1 on the GF diet! More than worth it for me! Because you both will be GF, it will actually be much easier to follow the diet. I think it’s really hard for people who don’t have supportive spouses. She should also look into the Anti-Inflamatory Diet. Mrs. Dude has been thru a lot this year with cancer…stress can cause adrenal fatigue, which can also cause inflammation. She should stay on top of thyroid levels, cortisol levels, do yoga & relaxation techniques and clean eating (as little processed as possible). Good luck!
Yes Yes Yes. Joint pain. Nerve pain. And both got better after going gluten free. Took awhile. And because I had suffered with that pain for 20 years before I got diagnosed with Celiac and went gluten free, and because 15 years ago, when I was diagnosed, there wasn’t much info out there and I kept getting glutened by mistake, I haven’t totally recovered from all the damage. But I know if I hadn’t let it go on for so long, believing doctors who told me nothing could be done, I would have had a complete recovery. Hang tough Dudette. It WILL get better. And keep reading! Books are wonderful friends 🙂 And Dude, yes, you are blessed to have that big kitchen, but also to have a spouse who cares as much about her children’s and her husband’s health as she does about her own. Of course, I’ve never met her, but from what I’ve read, she is a very special person. I hope going gluten free helps your daughter to quit hurting.
Lots of great advice on here GD and Dudette. About a year after receiving my celiac diagnosis, I started having joint pain, headaches, and nerve pain in my hands and feet which interfered with everything, as I imagine you can relate to. After a visit to various doctors to make sure it wasn’t something like lupus or rheumatoid arthritis, my original family doctor tested my vitamin B12 levels on a hunch and it came back abysmally low. Thanks to my celiac, I don’t absorb it and it’s one of those vitamins that supports nerve and brain health, among other things. Apparently, it’s also one of the most common vitamin deficiencies out there and most don’t even know they’re missing it. I give myself a shot in the thigh every 2-3 weeks (for three years now) and I’m symptom-free. It’s worth a try to have it tested. I truly hope you figure out what is going on and you’re already going in the right direction by cutting out gluten. Stay positive!! And let us know how she’s doing GD!!
Any signs of inflammation in the body is an indication that something in the diet or lifestyle is not working for that person. I always recommend clients look at reducing the main culprits – gluten, dairy and sugar but doing a full elimination diet to address all 8 allergens. She should also look at addressing any chemical sensitivities and lastly check for any infections in the body. How are her detox pathways? (bowel movements, skin, liver, kidneys) – often the build up of toxins in the system can cause tremendous pain. For me it was a combo of things celiac, candida, and leaky gut and addressing some food sensitivities and chemical sensitivities. After doing all that and still having some unexplainable pain, I was tested for Lyme and it was positive. Sadly, I went undiagnosed for years. Often 1 condition looks like another and/or gets masked by having several issues going on at the same time. Wishing Mrs. Dude great results with getting to the bottom of it all!
Sorry to hear dudette is not feeling well. Hopefully going gf will sort things out for her.
I suffer from problems with my neck and shoulders, not sure if it’s related to having coeliac disease or not but think it is probably a contributory factor. Being on a gf diet has not helped in my case however I do find a few things that do help. I soak in Epsom salts and take a magnesium supplement as this can aid inflammation, I also take a calcium supplement and vitamin D3. I go for physio which includes deep tissue massage, dry needling and exercises. I hope you can find some of this helpful.
I sure dudette will be feeling better soon and find out what is causing it.
I am sorry to read that you’ve had this pain for awhile now. First off, let me say you’re a brave trooper and that it will get better, even if it stinks right now. Going gluten-free is never easy, and huge props to you for doing it. I hope that your pain lessens and that you start to get back to your old self quickly. It’s hard to go gluten-free, but once you get used to it and have a support team with you, it’s dividends are repaid in not feeling so awful and life gets back to being a wonderful thing. We’re all here for you, as are your mom and dad, hang in there, you can do it!
So sorry, Dudette! The doctors thought I had meralgia paresthetica–definitely very, very painful. Told me it was because I was overweight. Told me the numbness (after the pain) was permanent. After being diagnosed with celiac and going gluten free, pain gone, numbness gone. I don’t trust doctors anyone. Like them, but check up on them all the time.
I happened to see an article a week or so ago about a teenager in Lynchburg, VA, who started up a celiac disease support group in her area. It can be found on newsadvance.com (Dec. 27th), or just google lynchburg teen celiac. Maybe it’s your daughter’s destiny to be a help to teens and young people in your area (and beyond). She certainly has good resources available in your household! Best wishes for good health to your family in 2015.
I get it girl. I was in the same position during college. It’s how they finally diagnosed celiac’s. I had none of the regular symptoms, but my joints were in horrible condition and I got down to not being able to walk without the aid of a cane. I went gluten-free and without a few days was on the road to recovery. The best piece of advice I can give you is to own it for yourself. The moment I finally owned it for me was the day I stopped struggling as much with the emotional aspect.
In the meantime, kudos to your parents. Mine were clueless as to what it meant to be GF (supportive, but clueless), so yours are giving you some awesome direction.
I am not a diagnosed Celiac (the one time I’ve been tested I was clean), but I do get joint pain, especially in my knees, if I eat gluten. It’s not debilitating, but it’s noticeable. Also get acne and a stomach ache at times when I eat gluten. My wife, daughter and I are all gluten free (paleo, actually).
I am another who had pretty serious joint problems for years. It started in my very early 20’s and when it would flare-up for a few weeks I would feel more tired and then my joints became sore and weak (only inflamed and hot one time). It was severe enough That I had a hard time using scissors or my toothbrush, and I couldn’t lift my arms to blow dry my hair.
The pain came and went over the decades and I was diagnosed with celiac disease and hypothyroidism in my late 30’s. The pain actually flared up quite badly 2 months into the gf diet and didn’t go until I had been GF for about 6 months. I know of other celiacs whose joint pain took longer than expected to improve so my advice would be to give the diet 6 months if you can, until the end of the school year, then you’ll have a really good idea if gluten is the cause… If you are anything like me, 2 months gf is not long enough to judge if the diet works for you or not.
Hang in there Dudette. Your youth will work in your favor, and you’ll probably be feeling better in no time.
Hi Dudette! Yes, my joint pain pretty much went away after going GF, post celiac diagnosis. I had no idea at the time that gluten could even be a cause of joint pain, so, what a great benefit. I know, meanwhile it’s a big change, my thoughts are with you, and I’m glad that you have such a great support system.
I’ve been GF for 26 years after experiencing severe back pain along with being diagnosed with fibromyalgia. But I’ll share my daughter’s experience for the young Dudette. Our daughter as a baby cried all the time, always fussy and as a toddler was a never ending whiner. By 5 years old she fought about everything – brushing hair, what to wear, who she was going to talk to or not. Yep. She was something else! Finally one day after yet another round of exasperation as a parent I looked at her and said, “Would you like to try a gluten free diet like mommy?” She never hesitated and said, “Yes!” Two weeks later she was a changed child! I sat her down and said, “What feels different to you in your body?” And she said, “My stomach doesn’t hurt anymore, mommy.” OMG! We had been poisening her with gluten! It wasn’t easy or trendy to go GF back in the 1990s but I always made sure she had her own goodies no matter where she went and she never felt deprived. When she’d go away for a week to summer camp I’d call ahead and find out what their menu was and I’d make ahead and take for the staff to store and give her pancakes, muffins, brownies, pasta, even pizza. Some of the kids wanted HER food because it looked better than theirs! Supportive parents like yours and the knowledge they’ve aquired put you ahead of the game. Hope you get relief!
Your post brought me to tears. Bless her little heart. I’m so sorry she is in pain. I have psoriatic arthritis (PSA), which is kind of like the bastard step-sister of rheumatoid arthritis. Mine started in my foot… they kept telling me I had a stress fracture… 5 podiatrists, 1 orthopedic surgeon, 1 MRI, countless x-rays, and nearly 4 years later… I finally got a solid diagnosis from a rheumatologist. Through trying to find pain relief (after my diagnosis) I ended up seeing a naturopath, who helped me do an elimination diet. Removing gluten and other allergens has helped ease the pain and inflammation, although I still experience pain – ranging from minor to severe. My prayers are with your daughter and your family. If I can help in any way, or she needs to vent about pain, please don’t hesitate to contact me. I’m happy to help any way I can.
I had severe tendonitis in my right thumb; hurt from my thumb to my elbow. Couldn’t use a mouse, had trouble writing and holding my books. I also had arthritis in my feet and knees so bad I could hardly walk. After one month of being gf, no more pain! It only comes back when I’ve been glutened. Good luck to the Dudette. I have not been diagnosed as celiac because I refuse to undergo a gluten challenge. The pain would be too much.
It’s tough. My teen has discovered going gluten free helps her eczema. She ate cookies over the Holliday with gluten now the rash is on her face. She is quite bummed she is not like all the other kids. I gave up grains and dairy and my MS has been in remission for one year! Sorry no advice just understanding.
I experienced the exact same thing as the Dudette for pretty much all of 2014. Pain started in my wrists last January and the doctor said it was probably carpal tunnel so I was given splints to wear for a month. Nothing changed so I was referred to a Rheumatologist. Pain moved to the back of my hands and sometimes into my elbows. Mostly in the left arm/hand but sometimes in both. The pain was pretty much constant though varying – sometimes it just ached, sometimes it was burning, sometimes it felt like my hand was being squeezed.
Got a bunch of blood work and x-rays, the only thing that came back was low vitamin D. After awhile on vitamin D with no relief. So they sent me for an MRI, it came back normal. I was referred to an endocrinologist for possible thyroid problems. Endo said thyroid was fine for now but something came back showing her I could be susceptible to problems in the future, so get it checked every year (can’t remember what it was now). Also vitamin D had improved, but was still low.
The pain didn’t really go away, I had would have some good days and some bad days. Some days it was so bad I wanted to cry, whether I was using my hands or not. I went back to my GP because nothing changed, she game me a referral for a neurologist and a prescription for nerve pain pills – didn’t do anything but make me dizzy. She basically said she knew nothing else to test for and would just try to treat the pain.
The neurologist did a nerve study and the results were normal. I went back to the rheum and she sent me for a bone scan. Those results came back normal…. at this point I had also gotten all sorts of blood tests done and redone and nothing came back abnormal.
I had specifically asked all of those doctors about gluten. The endo said it could be gluten/celiac but refused to test me for it and just said to try a gluten free diet. The rheum and neuro said it could help if I wanted to try it. One of the doctor’s in my GP office that I saw said that gluten wouldn’t cause these symptoms and would only cause a rash and stomach issues. I had done some research and knew she was wrong. Finally after the bone scan and nerve study, I convinced the rheum to order the celiac tests – I really wanted those done before ditching gluten. Those came back negative and the next day I went gluten free anyway (the week before Thanksgiving….).
Anyway, I’ve been gluten free for almost 8 weeks now and the pain has pretty much gone away completely. It took about a week for it all to subside and I had a small flare up around week 3 but I think I may have been glutened – it was on travel for work in a small town and it came with a crazy itchy rash on my arm (could have been poison ivy as we were walking through tall grass/weeds for work – but I think it was gluten).
So I say to Dudette – try it, don’t go through a year of tests like I did. I was about to try to go gluten free on my own at the beginning of last year before I was referred to all those doctors and then decided against it so I wouldn’t skew any of the tests by changing up my diet. I so wish I would have done it then and saved myself a year of pain.
Before diagnosis and going gluten free, I had chronic joint and muscle pain over most of my body. I felt like a hunched over 90 year old woman, though I was only 30 something. I could barely walk. My back, hips, arms, legs, fingers , toes, elbows, knees, shoulders and neck hurt constantly. I was having a hard time bending my fingers. standing straight, bending over . Just doing normal everyday things like folding laundry was extremely painful. I thought I must have the beginnings of arthritis – yay (NOT)..
Then I went Gluten free and suddenly no more pain.. literally it happened over night. I could walk, and do normal activities without wincing.. I felt my age again and I mean that in a good way. The encouragement I can offer is the same thing I tell my gluten free kids.. “It’s better than feeling terrible and being sick all the time”. Yeah gluten free takes getting used to and it’s inconvenient at times..but you do get used to it. After a while it’s not big deal anymore. You still have delicious food but the good thing is your food will no longer make you feel awful. Hang in there kiddo..Gluten free is not so bad.
Hang in there Dudette. I truly hope the gluten free diet eases your pain! We’re all thinking of you and wishing you the best <3
I do not have Celiac, but after years of dealing with skin, joint, and gut issues, I was tested for food sensitivities and found that I am sensitive (have inflammation caused by) gluten. As someone who loves bread, pasta, bread, and pasta (not a typo!), I was really bummed when I heard this news — but upon removing gluten from my diet, I saw over time MAJOR improvements: a huge reduction in eczema flareups, no joint pain, no loud and bloated gut. (And while I miss my regular ol’ Snyder’s pretzels, the gluten-free ones are A-okay.) Even though your food selection might not be the same now, the exchange of feeling good in place of eating gluten is worth it. You can do it!
So sorry to hear the Dudette is feeling unwell. I applaud you and your family as well as her friends for supporting this tough but doable situation. 🙂
My CD diagnosis preceded a number of conditions complaints and years of…..fatigue, migraines, depression, moodiness, brain fog, memory issues, sore joints, achy joint and muscles, in addition to the GI issues. Liver issues as well…..yes the list just goes on—but a diagnosis and GF lifestyle saw the symptoms immediately start to suside. 🙂
In addition to a GF eating lifestyle, no caffeine or artificial sweeteners (can do nasty things to joints), and supplements including:
Vit D -rheumatologist suggests min for anyone with autoimmune diseases of 2000 ICU (in soft gels NOT tablets–made my joints snap crackle and pop while normal walking and that HURT!),
Vit E, calcium, magnesium and
you might want to consider Tumeric in foods in addition to supplements….think curries or golden milk (tastes good) from ayurvedic medicine and will help get to sleep as well as ease the joints.
coconut oil – to cook and add a bit to the morning smoothie to help “grease” those joints.
feel free to reach out for suggestions or questions, we all as here to help make the FAMILY comfortable.
All the best to everyone at the Dude Ranch for an abundant, healthy, prosperous 2015 and beyond!
So sorry to hear it. My Dudette, confirmed celiac 3 years, suffered awful joint pain. Wrists, ankles, knees, jaw, etc….. While a GF diet has reduced her pain, it hasn’t completely left her. On especially bad days, usually weather related, we heat a rice filled heating pad in the microwave and it helps some. Another thing that helps is warm soaking baths in Dr. Teal’s Epsom salt. This is a favorite when a glutening occurs too. Hang in there Dudette!
Sorry dudette your hurting, but chin up it does get easier one day at a time, plus you have a rockstar on gluten free living for a daddy so your super lucky there.
When I read your symptoms it was like seeing a ghost, as that is how things started off for me, aching wrists, and joints and one time pain so bad my husband had to with one of my friends carry me into the Ed because I couldn’t move. Like many here , the Dr.s scratched their heads and dolled out a prognosis of diffuse myalgia, that later became fibromyalgia, with no relief outside an epidoral shot. Then I had another bout that I was later slammed into a vegan diet and elimination diet. I had a dr who wanted to find the root of my problems there after finding out what my diet was, but at the time no insurance so in 2012 I waved a very important test that could’ve stopped it all then. As I was scared of money issues and wasn’t to trusting. Years later in 2014, the mountain came down for me after a party, and I woke up at home in so much pain and feeling like I was going to explode from the pressure of the bloating. As I was googling what was wrong CD kept coming up in my searches. Then the hubs woke up, hearing my whimpering and prayers to God, Krishna, Odin and all other deities to please make it stop drug his wifey to the hospital and said take the tests like a champ. for days crickets then a trip to a gi came, the sum of my fears came true, aka Maury style” Silmeria , you do have Celiac disease.” This is the short version of how I found out, but I now know what’s been going on. Sadly for me I had to give up a lot more than gluten, which made me a very sad panda, but one day at a time I am getting better. Plus I’m taking far better care of myself now then ever before. I’m hoping in the end this is all a false alarm for you, but if it’s not your strong and surrounded by again rockstar parents. Hang in there.
I went to see my doctor a month ago because of nerve problems in my hands and wrists. He told me it was very unlikely to be anything to do with my CD as nerve problems in CD are almost always related to vitamin B12 deficiency and apparently people have a 3 year supply of vit B12 stored in their liver. He diagnosed carpal tunnel syndrome and suggested a brace. Back home, I looked up some of the scientific studies on CD and vit B12 and discovered that 40% of celiacs have a deficiency, even if our doctors don’t know it! I started an over-the-counter supplement (GF obviously) and within two weeks my symptoms had almost disappeared. I never even tried the brace.
Good luck Dudette! I hope you feel better soon!
Thank you for this info…
I just hope you get to the bottom of whatever is going on with Dudette! We all know how awful these symptoms are, and there is nothing worse than not knowing what is causing them (i.e. how to combat them).
Just to add what I have learnt since posting this last Sunday: it seems that low vit B12, vit D, iron and vit B11 (folic acid) tend to occur together quite often in CD and other autoimmune disorders (first three were low for me on my last screening). Also: what is considered a ‘normal range’ varies between clinics and changes over time. Vit B12 for example is currently considered normal in the 200 – 900 range, but in other countries it’s 500 – 900. I am learning to always ask for my exact values and not just take the doc’s word that they are ‘normal’. My vitB12 was 275 and I was definitely symptomatic.
Best of luck! I am coming up to two years post-diagnosis and your website has been a huge support to me. It is a wonderful forum for the celiac community and it has helped me so much to know I am not alone struggling with this!
Hi! I’m so sorry to hear about your wee lassie! I had numbness in both hands, that came and went, and my joints screamed to the point there were many many nights where my hubby had to sleep in the guest room as his movements while he slept caused me agony. There were more meals than not that hubby had to dice up small so i could scoop them up out of a bowl with a spoon. Not only was holding a fork and knife undo able for me but chewing anything the least bit chewy hurt. As I deteriorated and doctors were no help at all, we turned to the advice of our friends. One had me eating veggie style, within a week I couldnt get out of the chair without help. Then another friend suggested steak cooked no more than medium rare and raw onions, nothing else. And within a few hours I did feel better! I still require an insane amount of protein to physically function. For whatever reason, it only works for me with steak, not hamburger, not roast, but steak. In someway that we cant explain, the onions make a difference as well, yellow, white, red or green, they all seem to work about the same. After finally being diagnosed as a Celiac most of the pain in my joints quieted down. But when my joints flare up, or I get pale, I know its time for infusions of steak, oh with the fat, that seems to make a difference as well. No one can explain why the beef + fat + onions helps, but at this point, I dont care, I can walk again!
I have Celiac, and I have joint pain. Yes, it improved after going gluten-free, but it took longer than 2 months. Despite being strictly gluten-free for several years, I still have low Vitamin D, which can be quite painful in the bones and joints. Might be worth checking her vitamin levels.
When I was first diagnosed with Celiac Disease at the Celiac Disease Center in NYC about 11-12 years ago, I had pretty serious peripheral neuropathy. I had all sorts of tests, including punch biopsies (painful!) and they couldn’t figure out why I had it or what to do about it. After being GF for a while, it disappeared. I have been GF now for about 12 years and I have never had a recurrence of peripheral neuropathy. I have jumped on and off the paleo or SCD diet, but sometimes I buy GF ‘regular’ foods, as well. I have done best when I have had intravenous vitamins and lots of oral supplements. I also gave myself B12 shots 3x a week when I was at my sickest point. I still take a huge dose of Vitamin D. (50,000 IU). It certainly helps a lot of things. I encourage you to have Dudette tested for vitamin and mineral deficiencies. I was really surprised at how bad my numbers were for basic things like magnesium, folic acid, D, B12, iron, vitamin C, etc. I blame it on lack of absorption due to the celiac and LC. The huge doses helped a lot to combat the pains, fatigue, etc. You might also want to test for Lyme Disease, since joint pain can be a huge sign of that awful disease. My aches and pains were so bad at one point that I thought I had Lyme, but it was Addison’s Disease. The symptoms are similar. A good medical workup by an MD and an alternative MD may uncover some things for you.
I love your site and so rarely have time to leave a comment but if I can help in any way I’d love to. I was diagnosed with Celiac three years ago after nearly 11 years of joint and nerve pain that was misdiagnosed many times over. I was told that I had everything from Lyme Disease (no) to a nervous disposition (really). My primary symptoms prior to diagnosis were joint pain along the right side of my body, fatigue and unexplained weight loss. As I made my way through my medical journey I experienced many years of symptoms that were mild enough that, although I wanted to have answers, I was ok when a doc turned up nothing. That all ended when I started having wrist pain that could not be explained. I did not participate in any activity that could reasonably explain wrist pain alone and had a host of other joint paint/neurological problems that I knew something was amiss. From the time of initial doc appointment focused on joint pain to diagnosis was two years. In those two years I experienced extreme joint pain, depression, physical affects of malnutrition and a host of other symptoms. Since my diagnosis and going gluten free I am pain free. I hope your sweet daughter and your family find relief.
Hi folks. Such amazing support and advice. Thank you. Thank you. Thank you.
When I got the CD diagnosis, my partner, bless him, said our whole house would go GF. It’s helped our whole family. My children had aches and pains their entire lives and did not want to connect those pains to the bread and other foods they loved so much, but having the whole house safe for me, and eating like me, made them realize how much better they felt, and how bad they felt if they got glutened outside our house. My partner did a “Whole30” month with me to keep me company, since I suspected I had intolerances to more than just gluten (correct, I cannot eat dairy or corn either) and he discovered gluten was making him run down, achey, spacey too. He’s a much better case…if he gets glutened he seems to recover in a day whereas it takes me 6-7.
My point is not that no one should eat gluten, but that keeping a GF house can accidentally help people who have similar genetics to you (or just live with you). And yes, nthing the idea of malnutrition and vitamins. B vitamins and magnesium saved us over here.
I had joint pain for years, took the blood test twice, it was negative both times. A new doctor that I had suggested I try going GF (only after I asked her if it would help!) you see, as a young woman, I knew I would be suspected of an eating disorder if I didn’t wait for someone to OK it first.
It worked, but it took a few months. It was mainly in my forearms and fingers. I also had knee pain, which was dealt with by quitting dairy later.
I found that frozen raspberry smoothies helped a lot with pain for some reason, and spirulina made me feel better too. I’m happy for you and your daughter, and it’s a great thing she can just hop right on board.
Oh man–tell her that if she does get better, it can get a LOT better! My 2015 started off pretty much the same way, except that I’m 30 and have had random undiagnosable health problems since middle school. After less than three weeks GF, not only am I basically rid of major issues like anxiety, depression, and crippling OCD and paranoia; I’ve also lost something like 10 lifelong “minor annoyance”-type symptoms that I’d always taken for granted–everything from chronic nightowlhood to dandruff. I really, really like this. A lot. So for your kid(s), the inconvenience of GF might be more than outweighed not only by the difference it makes, but by the surprise and enjoyment of finding out just how many differences show up.
I hope for her sake that she’s only got a sensitivity and not full-on celiac (hope the same for myself, since I do NOT want to go back to the old headspace if I accidentally breathe near cat food). But regardless of the form it takes, she’ll save herself so much bother and hassle–and danger, and money, etc., etc.–by catching it now. And if that is the answer, here’s hoping it shows right away. There ‘s nothing like immediate relief to validate new habits. Best wishes!
Hey Dude–I’ve just started Googling this stuff and coincidentally came across a connection yesterday between idiopathic juvenile arthritis and celiac. Here’s one example: http://www.celiaccentral.org/newlydiagnosed/Related-Conditions/Juvenile-Idiopathic-Arthritis/45/. No idea if that’s what Dudette has, but it looks like a documented “yes” to at least one variant of, “Does GF help with joint pain?”
As others have mentioned, you can tell the Dudette that if she does feel better with GF, she can actually get a LOT better in unexpected ways. My 2015 started off pretty much the same way as hers, but I’m 30 and have had random undiagnosable health problems since middle school. After less than three weeks without gluten, not only am I basically rid of serious life-hampering issues like anxiety, depression, and crippling OCD; I’ve also lost something like 10 “minor annoyance”-type symptoms that I’ve always taken for granted–everything from chronic nightowlhood to dandruff. I really, really like this new state of things. A lot. So for the Dudette(s), the inconvenience of GF might be more than outweighed not only by the difference it makes, but by the surprise of finding out just how many differences show up.
I hope for her sake that she only has a sensitivity and not full-on celiac (hope the same for myself, since I do NOT want to go back to the old headspace if I breathe near cat food or whatever). But regardless of the form it takes, she’ll save herself so much bother and hassle–and danger, money, etc., etc.–by catching it now. And if gluten does turn out to be the answer, I hope it shows right away. There’s nothing like immediate relief to validate new habits. Best wishes!
Thanks TONS for all of your input and good wishes. Seriously appreciated. She has had the blood test for celiac and it came back negative. That’s as far as we’ve gotten.
Ok – I’m new to the Gluten Dude – just a few weeks – and I unabashedly say it: “I love you, Dude.”
You think and say ALL the things I think and sometimes say, and sometimes just keep the hell to myself because even though my family friends are AMAZINGLY understanding, still – there is so much crap out there and I’m sure they must get inured to my rants. So THANK YOU.
(I was finally diagnosed Celiac about 15 years ago and have been GF since. I’m 56 now)
For your Dudette – It’s OK, kiddo. You will feel so much better, you just won’t miss it. I hope it kicks in soon, because pain is hell.
Mrs. Dudette – you ROCK. It takes a lot of love and selflessness to resolve to live this way for the people you love.
Re: Pains and joints etc… I’ve always had what I call a cranky skeleton – TMJ Disorder (SO much jaw pain and horrible headaches until a brilliant dentists made me a splint and I got slowly better)… Carpal Tunnel Syndrome, finally handled with hand therapy, splints and acupuncture (They wanted to do surgery originally).
knee pain, though I had great cartilage… neck and lower back pain… cranky shoulders…
And then there were the hips. When the pain and aches started 8 years ago, my EX-doctor (Who incidentally scoffed in my face when I told him I have Celiac) mis-diagnosed me with soft tissue damage, and I proceeded to treat it as such.
Eventually I was in so much terrible pain, I was reduced to a cane, barely able to walk, limping through my last show for a while ( I’m an actress/singer, director, etc. in addition to my day job.)
a new Doc took x-rays. Over that 8 years, my hips had ground down to a fine powder. The Dr. and the surgeon he sent me to were shocked I could even stand. Pain was always between 7 and 10.
Bi-lateral hip replacements. Turns out, I had hip dysplasia which, undiagnosed became arthritis and complete degeneration. not “soft tissue damage”.
Hip # 1 was replaced in September 2014, and #2 in December 2014. A year later, I am SO HAPPY – I have my life back,
pain is down to a rare occasionally 2 or so.
But I attribute a LOT of the recovery from all of those issue to the fact that I’m gluten-free now, and I’m not inflamed all the time any more!! Most of those recoveries were during the time I was getting rid of gluten – and I know it made all the difference in the world.
So, aside from my shiny new swivels 🙂 – the rest of me does pretty well, and a the occasional massage and chiropractic adjustment keeps me purring along.
I hope that might be a little more hope for Duddette – My poor hands used to hurt SO badly – I couldn’t cook, type, etc.
And now it’s ALL good.
Best to you and your family – and thanks for the frank and awesome Good Stuff.
I hope your daughter is already feeling a little better in the last two weeks. My daughter’s recurring joint pain was repeatedly misdiagnosed as growing pains and patellar tendonitis by a pediatrician, an orthopedic surgeon and a physical therapist. It was a phenomenal rheumatologist, Dr. Thomas Lehman at Hospital for Special Surgery in NYC, who finally figured it out: celiac! Even though her numbers were very low, and in the ‘equivocal’ category, he suggested pursuing an endoscopy. She was celiac! Her pains took a few months to disappear but did go away after going GF. I would go to him for any ‘undiagnosed’ pain – he takes a real personal interest. He changed our lives for the better.
I suffered from severe joint pain and sensitive nerves in legs, wrist, and feet mostly for many years. I was told I had fibromyalgia. I also was told I had a marker in my blood for Lupus. When I finially stopped eating Gluten after a neurologist suggested I give it a try, my pain went away. I mean it was just gone after just a few weeks. I am 6 years gluten free and I’m cleiac. I sure hope this helps your beautiful girl feel better soon. You are suppose to feel well when you are young!!
Prior to my celiac diagnosis I had been experiencing joint pain, especially in my hands. I couldn’t lift anything without shooting pain. This was particularly distressing because I practice aikido at a senior level, which focuses on joint locks and throws. I thought I was going to have to retire after 20+ years on the mats. When an old knuckle injury on my middle finger started to swell, I requested a referral to a rheumatoid specialist due to my paternal family history of RA. Negative for RA (hooray!). One year after adopting a strict GF diet, the hand pain is mostly gone (other than the usual issues related to being 50 but thinking I’m 30). Now, pain in my hands is the signal that I’ve been inadvertently poisoned.
This is my first comment here. I have been following your blog for a while. I have had joint pain for a couple of years. My wrist has been hurting for the last 2 years. it comes and goes. It gets worse when I do cleaning or some not so heavy lifting. I wake up every morning with back pain. I go to gym 3-4 days a week but my bones heart after the workouts. Sometimes it hurts so much that I can not do anything else. I just want to lay down.
I have been tested for celiac and of course the result was negative. What I know is I am severely Vitamin D deficient. I have been taking them everyday for the last 2 weeks. Don’t feel any better yet. Actually first week I felt worse after taking them. My bones hurt even more. This week it is much better. Most days I have no energy. I can not concentrate on my work. I always thought I was depressed or something was wrong with my brain. I have been thinking going gluten free for a while. Unfortunately I love everything that has gluten in it. I love food. I love cooking and baking. I didn’t have the courage to give it up completely. Today after reading this post I am determined to go gluten free and see what happens. I hope your daughter finds relief. Best of luck.
Thanks Eva. I hope you find relief as well…quickly.
oh, I just realized I forgot to mention that I also have some digestive issues, bloating, gas, etc. So, it is time to try going GF.
I too have experienced achy joints, pain in my hands, wrists, and both arms after eating gluten. I have lived gluten free on and off for a couple years and it’s difficult but once I put my mind to it I feel and function Sooo much better! Thanks for your article! It’s helpful seeing how others are dealing with this too.
Just stumbled across your blog today and although it’s from over 6 months ago I decided that I would reply.
My story is this: way back in 2007 I had terrible all-over body itching and when it was relieved there was always this itching feeling remaining at the back of my head. I did all kinds of research, went to my GP and also to a dermatologist. Now believe it or not 2007 was only 8 years ago, but GF and the multi-million (billion?) dollar food industry was still in it’s infancy. My GP didn’t know what to think and so I went to the specialist. That was sort of a joke as I never even got to see a doctor, but a physician assistant and this person was clueless. The best they could come up with was to do extensive skin allergy testing which I refused as she indicate little hope of having any kind of an answer from such testing. So basically back in 2007 no doctor could or would help. It took me about 6 months from the initial doctors’ visits (March ’07) to make the decision for myself to go gluten free in Sept. ’07. The final clincher was that I read in the Merck Manual (the bible of western medicine) that back of the head itching can be caused by celiac disease.
So that’s what I did. I cleaned house of all the gluten in my life. Since I can’t force others to go GF I got my own toaster, never cross-contaminated even the tip of any spoon, and sourced out hidden gluten (toiletries, soaps, envelope glue, etc.) researched baking and cooking so that my GF alternatives were even better than any wheat flour home-baked goodies. I found great new foods and feel that this has in general cleaned up my diet, although it was a slow, frustrating process at the first couple of years. I did this from 2007 to 2014.
NOW, fast forward again. In June 2014 I was told via a blood test (yes, I know these can be woefully inaccurate, esp. if one is already living GF) that I did NOT have celiac and so from then I was told to go ahead and eat gluten again. I can say hands down that this is among the worst medical advice that I have ever received. For one year (June 2014-June 2015) I ate gluten and my joints hurt, my hands ached, my knees hurt, I took anti-inflammatory drugs sparingly (aspirin) and just basically suffered. I hesitate to to take aspirin because this can be so hard on the stomach and so mostly I opted for the pain. Everyday there was just always some kind of ache, nagging or discomfort.
The thing is that I’ve read and read on the topic regarding inflammation in the body and the causes and what further situations it can cause. When I was in my mid-20s I was told that I had an extremely high (still have the paperwork) blood antigen indicating rheumatoid arthritis. Again, no real help for this situation back then.
It’s worth noting that there are spectrums of gluten sensitivity that can produce a myriad of symptoms. If one gets checked out for any other causes (basically the process of elimination), then the best advice I read from a medical doctor (on Medscape: a fabulous online medical journal because so many medical professionals comment and say what they really think, which is a real eye-opener!) is that any time he has a patient who presents with persistent idiopathic joint pain he recommends going gluten free.
Now up to the present time: July 2nd, 2015. I’ve been gluten free again since early June and my joint pain is gone again. It was gone so many years with my GF diet that I’d forgotten what all these aches and pains felt like — and they hurt! I would have to say that being GF may indeed help your Dudette and also that I LOVE that your wife “owns the situation”. That’s the only way to approach the decisions of one’s health and that of your children.
I’ll have to read more of your blog entries and see how your Dudette has done on her GF diet thus far. I hope she has found some relief!
We ended up testing her for celiac and it came back negative. So she is eating gluten again. And her joints still hurt.
Hello GD & dudettes!
I am sure you know this but thought I would mention, as I think of your duddette often. :): children of adult celiacs should be tested every 2 to 3 years and more often if there are symptoms per Nicole Aylwand in regard to “Nutrition for the Child with Celiac Disease”.
GF living hugs & healthy wishes,
You know that if she wasn’t eating gluten when she was tested for celiac she could have had a false negative test. Also, your immune system can give out on you and stop producing antibodies to the gluten. Here’s some info. http://chriskresser.com/the-gluten-thyroid-connection/
Hashimoto’s disease starts attacking the thyroid but also attacks joints. She can have Hashimoto’s for years with only flare ups. Until the body gets to the point it attacks everything. I found out I had a thyroid condition in 2012, and was on thyroid meds. By July 2015 I was in constant severe pain. Every joint even my ribs. I had to get to a point where I was crying in the doctor’s office and told them either help me get better or help me die. I was going to be stuck in a wheelchair and I had only a life of pain stretching out before me. My Doctor told me she needed to look at some things in my tests, left the room, posted a nurse at the door. 20 minutes later she came in with a rheumatologist, endocrinologist, an alternative medicine DO/MD, and my psychiatrist. My psychiatrist came in first, and I got so angry I thought I was going to explode. I yelled at her,”I’m not crazy, if say one word about this all being in my head I am done, and yes I am depressed, what normal person in constant severe pain wouldn’t be depressed you idiot”. Turns out she was there because I have OCD and I get overwhelmed easily when bombarded with a lot outside my normal day. She calmed me down and explained I wasn’t leaving until they figured out what was wrong, and neither were they. They pulled up my records and went through 10 years of medical history, even though it had really started 20 years ago when I was 20, my records theyhad access too didn’t go back that far. The Rheumatologist was sure I didn’t have RA, but was positive I did have fibromyalgia. The best thing to do for fibro is exercise, I gave him the death stare and my psychiatrist talked to him out in the hall and he didn’t come back in. My thyroid numbers were rising again so we needed to up my thyroid meds. Okay, well we’re doing something, we’re 2 hours in. We all go down to the lab for some stat lab tests. Then back upstairs but to a conference room. More looking at records, then looking at results. 3 hours in. I’m telling them there is literally not one part of my body not affected, it’s like there’s something off, like I didn’t have balance. No joke the DO, and the endo look up at the same time and say hormones. I almost got mad again, because I thought they were meaning like menopause or something, I was 40. They start typing away on their computers , as they’re doing this the physicians assistant came in and said hey have you ruled out hashimoto’s? Apparently, that’s exactly what the endo and DO were looking at. I had hashimoto’s and fibromyalgia which is actually a combination they see a lot. Only I can’t go on autoimmune meds because I have asthma and the meds cause lung infections. Yeah! I know what’s wrong and can’t do anything. They talked me into trying a anti- inflammation diet. Part of that was gluten-free. Three months later, I am walking, I am losing weight, my knee that hasn’t worked since my knee surgery 5 years ago is finally starting to heal and I can now walk up a short flight of stairs. Shoulder pain gone, rib pain mostly (I have back problems too), hips are getting there still have flares, knees 90% better, hands, wrists, ankles, and feet not so much. I take thyroid meds, meloxicam to help inflammation, and they put me on phentermine because I had gained 140 pounds thanks to my thyroid and being immobile. It’s not an over night thing, but I am getting there. I have lost 30 pounds and am at the point where I may be able to start some real exercise, although I have to take it slow and steady. Going Gluten-free saved my life. I know that this is a really long post. Sorry. Another thing they tested for was Lyme disease it can cause severe joint pain as well and mimic MS. It often goes undiagnosed because not everyone gets the rash.
I started a new job about six months ago. A coworker mentioned being gluten-free nearly daily. I though she was one of those skinny women who complain about dieting all the time. Then one afternoon she mentioned how she had off the wagon all weekend and the negative side effects she was experiencing from eating gluten. I had been suffering for years with unexplained inflammation and crippling joint pain. It was so bad I would cry in the shower because I couldn’t stand the pain of trying to shampoo my hair. I had undergone multiple MRIs and so many test with no explaination for why I was in pain. One so called specialist even joked that maybe they would name the disease after me when I died. Anyways, I figured I had nothing to lose, so I cut out gluten. It has changed my life. I can cook, clean, crochet, shampoo, jog, type, etc. all with no pain. If I slip up and give in to the temptation of pizza or bagels, the pain and the swelling returns. Not sure why all those years and all those doctors (not to mention all that money wasted) not one person suggested an elimination diet. I am so grateful for my coworker. She saved me from more pain and suffering than she will ever know.
Wondering on an update? I have had two very different people both go off gluten and almost eliminate some chronic pain (different pain, areas, etc. also). I have been suffering from chronic, unable to diagnosis pain. How did Dudette do?
Golly! Is there a way to UNSUBSCRIBE to future comments, now?!! These off-topic computer generated/ESL spammy ones (check the sender’s link) are kind of annoying (any way to remove THOSE, GD?)!
Sorry about that. Hundreds of spam comments blocked every day. A few sneak thru.
I suffer from lower back pain and for me, gluten intolerance is definitely a major factor. My chiropractor first suggested I try a gluten free diet and I have been doing so for the last 20 years and my back has been much better in that time. I am currently suffering today and I can link it to chips I had on Monday (2 days ago), I also have an upset stomach today, so I’m 100% convinced. Whenever my back hurts now I can nearly always link it to something I have eaten outside of my usual regime.
I had been suffering with excessiveand I mean Excessive joint pain for about 7 years. Doctors after doctors and found nothing. Considered me a fibromyalgia case and tried putting me on meds – no way. Finally found a doctor that said to go gluten and dairy free.
Been 4 years now and i cant tell you the difference I feel. If you feel pain try gluten free, so many options today so its so doable and your body with thank you in return.
Yes, snacks are such a great thing to carry on you. Especially when traveling. Options are limited and youll be so happy to have something you like and are certain is gluten free.
My joint pain started in the wrist and was unbearable. My symptoms spread with migrating joint pain, lots of all over pain, visual disturbances, confusion, sleep disturbances, headaches, digestive disturbances, nightmares, sweats hot/cold, mood swings, etc. Turned out to be some form of Lyme, mycoplasma infection and took years of heavy antibiotic use. BTW it was very difficult to get diagnosed..did not show up in blood testing. I convinced myself to try a dose of doxycycline and had a huge herxheimersI reaction and knew! I found a Lyme literate doctor and got the help to start climbing out of the decline. I still deal with fibromyalgia accompanied by above symtoms in milder form. (thank goodness) but found eliminating gluten and dairy made a huge difference in severity of pain, digestive disturbances, headaches and especially brain fog/confusion. Sleep still challenged but I am devoted to finding the best remedies through diet and healthy life choices! Thanks for your input and light and love to all…M
I had acl reconstruction about 7 months ago and have been dealing with stiffness and swelling still. About 2 months ago my house decided to clean eat for a few months to see how it dealt with other issues we were facing. During that time, my knee was feeling great and I really didn’t think much about it ( I was 6 months post surgery and assumed I was getting better). However, when we introduced wheat again the stiffness came back. Once I stopped eating gluten again, the relief was almost instant (within a few days). Now I have been gluten free for about 2 weeks again and while I still have the occasional swelling post work out, the stiffness is almost 100% gone.
2 of my family members have tested positive for celiacs. I was a negative, but I am second guessing my tolerance of the delicious little thing once again…
So I have about had pretty much every medical test ever run on me. I’m 25 and have had 12 surgeries (6 in fh last 3 yrs), I have stage 4 endometriosis and some sort of serious inflammatory autoimmune disease that is most likely related to the endo. I’ve had ovarian cysts since I was 15 and 2 episodes of torsion, I’ve had it all. We’ve looked for lupus and RA and about everything, and my blood tests always say something is up but it’s inconclusive. I have severe join issues with pain and swelling. The 3 things that have helped: 1. Lyrica 2. Going gluten free 3. Going organic, no antibiotics or hormones in meat/dairy and absolutely no GMOs. It has helped so much my joint pain is under control (unless I slip and give into bread). I think it’d really help her, at the very least it couldn’t hurt to try
I found by accident, that wheat was giving me and my joints a hard time. Doctors wouldn’t listen, but I did my own tests. Removing all wheat from my diet -pain went away. Reintroduce wheat – pain came back. Wrists, thumbs, fingers, knees, ankles, toes. Doctors still are not listening, and every now and I weaken (fresh bread mmmmm). Pain comes back. I am working on digestion now. More fibre/ probiotics.
Her wrist pain reminded me of mine when I was younger and I was diagnosed with Kienbocks Disease . Sorry that’s random but read this while I was researching gluten free diets
I had deteriorating health for approximately 5 years. Cholesterol and weight going up. High blood pressure and in October I had some bloodwork come back showing fatty liver with glucose above 100. I already had been diagnosed hypothyroid and low T. I started a version of Paleo. In three months, I have lost 20 lbs and most of my energy is back. I have actually started jogging intervals again. I eat like a horse yet am losing weight. My gut feels 500% better and my doctor is amazed. Gluten can be a problem for many people and they just not know it. If you have chronic fatigue and are generally going downhill in health, try gluten free for a month. You may be amazed at how simple the solution is…
Hi, Gluten Dude!
It’s been a year since you posted, do you have any news, how’s your daughter, did she go well and, if yes (hope so), did she go gluten free?
Hi Gluten Dude!
Like Kati, I’m wondering how things have gone for your daughter and if she has found any relief. I have suffered with severe joint and bone pain for 10 years – since my first pregnancy. I thought I was just getting older and fatter and that was the cause until a very smart dietician I was working with identified it as a “food allergy” – at her insistence (and with more than one eye roll on my part!) I agreed to an elimination diet and was astounded at how good I felt 4 days after removing all wheat, dairy, eggs, peanuts and soy. All pain disappeared and I felt 15 years younger, with a clear mind and loads of energy! As I slowly added back the eliminated foods to identify the culprit, I learned that wheat was in fact the cause of my pain. Amazing! Who’d have guessed? Although I had no GI symptoms (aside from heart burn) I asked my doctor to test me for celiac disease; testing was negative for antibodies, with one genetic variant that is common to celiacs (although also common to 25-30% of the general population, so not a decisive test in any way).
Fast forward a couple of years, and after falling back into old eating habits, I found myself in severe pain this past Christmas. The joint pain had returned full force, along with extreme fatigue and brain fog. I truly felt like I was slowly dying and I knew wheat was the culprit, so I eliminated it starting January 1st. Now, 5 days later, the pain has again disappeared and the fatigue is nearly gone. The brain fog is receding, although I need more time off wheat for this to go away completely.
I’m still amazed at how much wheat impacts me, especially considering that heartburn is my only GI symptom when I eat it – none of the “typical” celiac symptoms. I hope your daughter is doing well and has found a fix for her pain too!
This is beautiful. I love how everyone so kind and supportive.
I’ve been suffering from joint pain in my knee and I’ve always blamed this auto accident I had years ago. It’s back, my right knee and my left knee ends up hurting as well. I always assumed it’s because I over compensated subconciously with the left and so it’s having issues as well. I’ve used a brace on the right knee for years when it would hurt.
I’d even blamed the cold for why my fingers and arms hurt because it always “Seemed to be with cold” and plus the age old “Your old injuries will hurt during the cold” trope so I kind of blamed weather and such.
However, I also go to anime conventions in January, May and July. Oddly enough I don’t experience a ton of pain even though it’s walk walk walk and the amount of walking is burning 2,000 calories (I tracked this for fun once)
I just got back from one 2 weeks ago in May with no pain but today June, my knees are flaring.
I started to wonder “What is going on?”
My weight is between 95-98 lbs (I’m a small mixed European-Japanese girl) and when I went to a doctor a few years ago they told me to lose 5 lbs and I would probably find better joint feelings because my lower half of my body is a little big. (I would NOT even call it big at 34inches) but at that time I was 96 and my reaction was there is NO way I’m dropping to 91 lbs That CAN’T BE the reason.
I admit the little voice in my head nagged at me and told me “What if i’m just being a stubborn person?” But i still, today feel like being 91lbs is NOT the answer!
But 3 month ago (March. It is June right now) I found my scale said 94 when I dropped without trying. My reaction was “What? Well, fine.” and I also hadn’t experienced pain and in the back of my mind I was remembering the doctor and I was kicking myself thinking “This can’t be possible. I”m SO MAD. Fine, I’ll try REAL HARD to keep this weight now”
So I did. I cut back on bread. I love bread but I decided “Okay, enough…I’ll run a few feelings tests and see what happens.”
Cut to today, (June) I was feeling bad on my knee again.
I’m 96 lbs. And I was thinking There is NO way two measly little lbs is giving me this trouble.
This last weekend I had a burger and pizza with friends and also had some lemon-cake and today is Wednesday and I’m feeling it. I also had lemon cake yesterday.
Which when I thought back to the Anime Convention 2 weeks ago, what was I NOT eating? Well, I don’t pack bread or milk. I pack a lot of fruit, water, and canned vegetables, tuna and other “No refrigerator necessary” items because lets face it, food at any event is EXPENSIVE.
My suspicion is “Is bread/wheat giving me these joint issues?”
I don’t seem to experience body pain at events were I’m using my body.
In the Winter I am also eating a lot more holiday food that I like to make like gingerbread, spice bread, cookies, bread, bread, bread.
Is this a link to my “cold weather pain spells?”
When I went to the Anime Convention event in January, there was a Subway on the block and I took advantage of their daily $5 foot long and split the sandwich with my brother and we had subway for the weekend lunch/dinner.
Of course there was also rain that weekend and coldness so I just blamed the weather yet again.
During the spring summer I don’t even tend to eat a lot of bread in general. I like to eat fish, meat, burgers (without buns because I like the nice charred taste of meat and bread always seems to overpower the taste in my opinion)
I’m not sure if its celiac or arthritis because I eat other trouble foods like no tomorrow: tomatoes. I can buy a case of cherry tomatoes and eat the whole thing in a sitting.
I drink a lot of coffee and tea. which I’ve read Caffeine makes flare-ups in arthritis.
I eat a lot of eggs, another arthritis flare up.
Now that I’m suspecting breads/grain i’m going to try not to touch them in the next months and see how it goes.
I really think this is a key because I’ve had great times where there was no back and joint pain and then suddenly there is a day I do have it and it’s crazy-weird and drives me up the wall.
I’m kind of lucky because I don’t always eat bread day to day. But I’m now wondering if those off days I have it in the months and then I have those joint/back pains is it linked to bread? Because right now is summer/warm and I’m having knee pain so it’s getting to be quite suspicious indeed.
I know this is an old post, but still…. My 8 yo daughter also has joint pain, in the legs mostly. To the point of not being able to walk at one point…. Or should I say USED TO HAVE! Since going gluten-free , no pain!! (When we reintroduce, justbto test, the pain came back). For us it was a no-brainer to try cutting out gluten, since her dad and grandma are also gluten intolerant. She was tested for celiac, with negative results (not celiac), so it seems to be an intolerance. Thank God we were aware of the possible correlation and tried this before any other painful medical testing or medication!!
I cannot find an update on whether dudette felt better or not. Any updates?
She’s feeling groovy!