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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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I play High School lacrosse and last season (before being diagnosed) I experienced joint pains so bad that I was put on the injured list for over half the season. The pains occured mostly in my knees and ankles but some times in other areas such as my hip and groin. I was told by my doctor that it was probably related to celiac. Has anybody else had symptoms like these?

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:( sure do and i think it is because we dont absorb our vitamins like we need to before going gluten-free--the pains should lesson as you get the gluten out of your system--i do find that if i do get some gluten or even soy, my pain comes back---but--yes is the answer--you are not alone! deb :)

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Joint pain was and still is a problem for me (however, the pain is less often now after going gluten free). Before going gluten-free, I had pain in both knees, my hip, and sometimes my ankles. Now I just experience some knee pain once in awhile.

Try taking daily calcium and vitamin D supplements. These may help.....

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i suffer much knee pain too--some times a few weeks will go by and nothing and then i will have pain for several days---i do take a good daily vitamin, but when i add calcium to it--my tummy complains <_< always something huh :rolleyes: i do feel that much of the pain is cleiac connected, but then again--i am getting old ;) deb

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B4 going gluten-free I had joint pain that led my dr to Dx me with Fibro and put me on pain meds for almost 3 years. <_< Now that I've been on the diet I'm off the meds and the pain is under control its not gone 100% but then like Deb im getting old and that could bet more the problem then anything. At leats now I dont feel like im ready for a wheel chair B)

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I had joint pain in my feet since I was 14. I had a radical buniondectomy when I was 23 and the doctor said my case was worse than more 70 year olds. I went gluten free at 33 and that's helping.

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I've had joing pain for years, and it certainly seems related to celiac disease! Knees and elbows and wrists. Glucosamine + Chondroitin helps me--at least the arthritis end of it.

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Mine's gone away enough i expect to get back to playing b-ball soon.

42 now, and haven't been able to play for 5 yrs. Started gluten-free (finally) 11 mos ago.

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Now i remember long before i knew i had celiac my left wrist hurted sometimes. In training camp it was so bad i couldn't even do push ups anymore. Sometimes it was there a few weeks, then it was gone again. My left knee makes strange noise, too. Though it doesn't hurt. But my right hip sometimes hurts so bad, i can't even walk. This hip pain started about two years ago and when i have it, it really shots down on the side of my leg. Since going glutenfree and regular sport it became very rare, though. It's worse when i don't do sports for a while or when i glutened myself accidentaly.

Stef

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B4 going gluten-free I had joint pain that led my dr to Dx me with Fibro and put me on pain meds for almost 3 years.  <_<

I was diagnosed with fibromyalgia/chronic fatigue about 4 years ago. I was prescribed pain killers, which often only make me more tired. Now I wonder if it is really just other symptoms of celiac disease?? <_< Probably don't help my chronic constipation problem either.

I'm only just finishing my first week since diagnosis, so I guess I'll find out...probably through this forum, as the information here is far more helpful than I think most drs are.

:rolleyes: Maggie

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This morning, my joint pain has returned with a vengeance.... Every once in a while it comes back, although I can't figure out any particular reason why, it's not like I was recently glutened or anything.....

My right shoulder, left hip and just killing me - I am limping around here like an 80 year old.....

Ah, the joys of celiac.....

Karen

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Hey Karen I to have days that I feel like Im and 80 yr old .... Im not sure where it comes from ... I was very active in sports in my younger years and have physically abused my body in most of my jobs so I have always figured that I would pay for it some day.... Maybe for me that day is sooner than I had planed <_< I can say that since I have been gluten-free I dont have to take the pain meds like I used to B) My Dr still gives them to me but only on a Prn basis, which is all I need them for now. B4 gluten-free it was Lortab 7.5 mg 3x a day just to function. If you can call it function when you in a fog most of the day :blink: So for me the gluten-free did make a difference in my pain .

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I forgot to mention before that I take glucosamine powder (around 30ml a day) for bone pain. I also have double strength apple cider vinegar. Maggie :)

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I have thought about taking Glucosamine .... what brands are gluten-free? or what brands have any of you had good luck with? My left hip and knees give me trouble from time to time from all the years I was a catcher in fast-pitch softball <_< Whats the deal with the apple cider vinager?

Maggie your from the land down under right ..... My niece is going to college in Sydney and her mother and I may be trying to paln a trip there next summer ... well winter I guess ... In June or July ... I hate to fly but thats the one place i have always wanted to go. The funny thing is I work for an airline and never use my flight bennifits <_< Im rambling sorry

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I was also diagnosed with fibro and chronic fatogue....all post viral...before I learned of my gluten intolerance.

They only thing gave me (for years) was different meds(pain killers, etc) and nothing helped. I can see a direct correlation between the pain and gluten. It's probably due to the fact that we don't absorb necessary nutrients porperly. I also think we are more sensitive so a lot of things that we ingest and that they directly affect out muscles. At least that's how it's been working for me.

Mel

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Here's my 2 cents: I was diagnosed with Celiac 2-1/2 years ago, and although the digestion was improving after going gluten-free, the muscle pain remained fierce. After researching all the possibilities, I concluded that it had to be a yeast imbalance since my intestinal tract was so trashed. I've remained on a yeast free diet and a daily regime of yeast killer pills. It has worked. My body is free of the muscle pain.

My neuropathy....that's another issue! I still have nerve damage from the gluten ingestion!

Carolyn :rolleyes:

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Are you avoiding sugar too? What yeast killer pills are you on? do you take a probiotic as well. If so...which one.

Just curious...if it helped you...maybe it can help others.

Thanks,

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The good news is that my neurologist says that our neuropathy will get better over time. My is so bad that I am permanently disabled. I'd just like to get out of this wheelchair and walk even if I can't go back to work. One lunch out set my neurological problems back the whole 2 yrs worth of getting better. Yuck.

The pain is a whole other story. I have been extremely careful and still can't get back to having pain-free days. I have a history of yeast infections but haven't shown any symptoms since shortly after I went on the gluten-free diet. If a yeast-free diet has helped you, I may try again. This winter pain is awful.

By the way, what pain meds are you on? I am having a devil of a time finding a gluten-free tramadol (generic Ultram). I use that particular pain med because it works quite well and is not addictive.

Donna

almost 2 yrs gluten-free

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After researching all the possibilities, I concluded that it had to be a yeast imbalance since my intestinal tract was so trashed. I've remained on a yeast free diet and a daily regime of yeast killer pills. It has worked. My body is free of the muscle pain.

My neuropathy....that's another issue! I still have nerve damage from the gluten ingestion!

Carolyn :rolleyes:

Interesting that it was yeast that made the last difference.

I think sometimes ppl stop looking as hard for 'what else is keeping things from being great' after the improvement from starting gluten-free. I know i did. In spite of not feeling great, it was such a relief to not feel awful, that i kinda lost the perspective that 'not feeling awful' was still a ways from 'feeling good'.

For me, it was casein that finally released me.

I've seen a few stories like this, w/ diff foods (besides the gluten) finally making the difference. I've seen great praise given lately to York Labs ELISA foodScan testing, where they check for problems w/ 113 diff foods.

(http://www.Lame Advertisement/p/articles/mi_m0EIN/is_2004_Feb_17/ai_113344041)

It IS expensive, but if i can find out another crucial food to avoid, it'll be well worth it to not go thru more sick days and trying to figure out why.

I too still have times where part of a hand or foot gets numb quickly, or tingly fingers, or my foot suddenly feeling like i'm stepping on a pencil point for 5 seconds.

I expect it'll get less frequent but i'm just so happy last yr's hell is gone it barely matters these days.

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Donna, as Tom described, the numbness, achy, tingly feeling in hands and feet, is that what your doctor said will go away in time? For some reason, mine has been acting up horribly over the last few days to the point where I wake up 5-10xs a night from it (just my hands though.) I didn't know if this would change or not. Say it's so!

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I have thought about taking Glucosamine .... what brands are gluten-free? or what brands have any of you had good luck with?

Whats the deal with the apple cider vinager?

Maggie your from the land down under right ..... My niece is going to college in Sydney and her mother and I may be trying to paln a trip there next summer ... well winter I guess ... In June or July ... I hate to fly but thats the one place i have always wanted to go. The funny thing is I work for an airline and never use my flight bennifits <_< Im rambling sorry

Hi llj..,

I take a brand called NUTRA-LIFE, but it is manufactured in New Zealand. I guess it isn't available in USA.

<_< I don't think it is gluten-free. It doesn't say it is anyway. Drat! :angry:

It also says it contains: dextrose, maltodexrtin, Glucosamine Sulphate, MSM ( Methyl Sulfonyl Methane) Chondroitin sulphate, Ascorpic Acid, Bioflavonoids, Manganese sulphate, Zinc Oxide, Copper Sulphate.

So, I guess I'm actually taking something that in one way isn't good for the celiac disease?? But WHAT do I take for the bone pains?

They have been really bad today, and the glucosamine does really relieve it.

Ok, to the apple cider vinegar. The one I use is made from whole apples - unfiltered, unpasteurised -aged in wood. 8% acidity. The 'mother' hasn't been killed by pasteurisation.

I use it on my meats and salads.

Here are a couple of links to help explain it more.

http://www.lacetoleather.com/wonderdrug.html

http://www.parrothouse.com/acv.html

http://fl.essortment.com/benefitsofappl_rrak.htm

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Someone mentioned Vitamin D supplements, Cod Liver oil is the best vitamin d supplementation choice. Before starting any vitamin D supplementation however, it would be a good idea to get your levels checked. It would also be a good idea to read up on the benefits of Cod Liver Oil, Mercola.com and Westonaprice.org is a great place to start. Cod Liver Oil helps with RA and a host of other diseases. Good Luck!!

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;) maggie and all--my sister takes glucosamine--she says it works wonders and yes--it is gluten-free--at lest the brand she gets is--i know she got it at Sams in Lansing--i have a spray that i use on my knees--the name brand is "Stopain" a topical analgesic spray--it contains glucosamine and msm--ingredients: menthol, sd alcohol39-c, purified water usp, dimetylsulfone (MSM), citric acid, glucosamine sulfate, eucalyptus oil, and peppermint oil----all good and works very well for pain-----deb

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I know that when I haven't had Glucosamine for a few days...(such as when I've run out a few days before pay day :angry: ) I really ache.

It's good to hear that it is gluten-free Deb.

I've started having calcium/magnesium capsules also. They are helping with the pains.

I helped my friend clean a large house last Monday, and the pain has been really bad since. :( I hate to say anything to her as she needs the help, but BOY do I feel it for up to a week afterwards, when I overdo it.

Does anyone else have this problem, and how do you deal with it? Some days I can't do much cleaning etc. at all because of pain and stiffness.

PS I was off the meds during the time as well, because of running out of $$$ to buy more. :ph34r:

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For what it is worth....

My doctor prescribed magnesium maleate for me. I also took mag shots (ouch!) for a couple of weeks. I had stiff joints...feet knees and fingers. It made a HUGE difference and stiffness and pain is now gone. He was very specific on mag MALEATE.

Hope this helps if you try it.

Allison

Georgia

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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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