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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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shp2drp57

Pain In Muscles - Real Or Imagined

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Hello,

I am a newly diagnosed celiac. I have just come from yet another doctor who is now saying that I am a hypochondriac. I have pain in the muscles of my legs in two places. I can feel that the muscles are tight and there is heat in the places where it hurts. This is something that came on right about the same time I finally got diagnosed with celiac and ulcers. I am taking nexium for the ulcers. Does anyone else have this problem with the sore and tight muscles. It is keeping me up at night but it hurts all day, too. I can see why the doctor might think it is in my head since I have been to so many doctors. Most doctors do not know celiac so I keep going to new ones in an attempt to find one who can tell me what this is. But, seeing all these doctors is something new, only this year after I got diagnosed with celiac disease. I have agreed to see a therapist but only because I am beginning to wonder why one would want to live like this, not because I think it is in my head. Thanks for listening!

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I have muscle pain all the time. I was also diagnosed with Fibromyalgia along with Celiac. I have pain all over my body. There are specific trigger points the doctor can check to see if you have this. Stretching helps and so does exercise. My problem is when I exercise I hurt more - I haven't gotten over that hump yet! So, I don't exercise often enough. Message helps to relieve the muscle tension too.

Check out http://www.mayoclinic.com/health/fibromyalgia/DS00079 for more information.

Also, http://www.fmaware.org

Elizabeth Secora

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Hello there, & welcome to the "celiac world"!

My main symptoms of "non-celiac gluten intolerance" are pain in my muscles & joints.

I was misdiagnosed with fibromyalgia because my rheumatologist didn't know what else it was.

I tried elimination diets to find relief for the pain, & stumbled across gluten as the cause...once I was on a strict gluten-free diet for a few weeks the pain was so much better.

Try the diet & see if it helps, though it might take some time for the gluten damage to calm down.

Other food intolerances might cause muscle pain too; I will probably need to look at eliminating

soy &/or corn down the road because I understand they can cause pain too.

Good luck. There are answers waiting, sometimes it just takes awhile to find them!

You're in the right place though; there's lots of support on this forum! :rolleyes:

Martha

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I am new to this message thing never used one before. I have known that I've had celiac sense 2001. Even though I have been on a gluten free diet for years I still seem to be in pain all the time. I can always feel my intestines. I have pain in all my joints & muscles. sorry I can't spell. Anyone have any sugestions? I can say one thing no one in my family believes that I have celiac disease. Most of the people I meet think I am crazy. I find it hard to find support.

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Dark Wolf,

You may have other food sensitivities--dairy, corn and soy automatically come to mind. It is common for celiacs to have intolerances to these other foods as well, and the symptoms are similar. Or, you may be just celiac, but still getting trace amounts of gluten through cross-contamination or in shampoos, toothpaste, soaps, creams, etc.

Hope this helps, and welcome to the board! :)

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I am new to this message thing never used one before. I have known that I've had celiac sense 2001. Even though I have been on a gluten free diet for years I still seem to be in pain all the time. I can always feel my intestines. I have pain in all my joints & muscles. sorry I can't spell. Anyone have any sugestions? I can say one thing no one in my family believes that I have celiac disease. Most of the people I meet think I am crazy. I find it hard to find support.

Oh, but you found us and we've all been through so much, nobody really cares about spelling, I think. :)

Welcome to the boards, dark wolf and shp2drp57!

I have pain in joints, muscles, intestines, the ball of my foot sometimes - it comes and goes. And yep, sometime the pain is all in my head. Tell that to your doc. It's called a headache. :D

Margaret

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Oh, but you found us and we've all been through so much, nobody really cares about spelling, I think. :)

Welcome to the boards, dark wolf and shp2drp57!

I have pain in joints, muscles, intestines, the ball of my foot sometimes - it comes and goes. And yep, sometime the pain is all in my head. Tell that to your doc. It's called a headache. :D

Margaret

OH MY GOODNESS MARGARET.....I swear I also can feel my intestines, what is that all about? You are the first person who I have seen write that, and I am so glad that you did. I have been gluten free for six months now, but my insides feel strange. I also have joint and muscle pain which comes and goes. Something tells me this will be a forever thing now. And your feet, do they hurt the most when you first step out of bed in the morning? Thats when they really bother me. Have you noticed if there is anything that makes you muscles feel better? Janet

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I had this same problem. My muscles hurt all the time. I used to lift weights, and for a long time, I couldn't even think about that without pain. Going gluten free helped, but finding out everything else I am allergic to really helped. I have a lot of food allergies and getting off all the food really made a difference. I an starting to work out a couple of days a week, and I have been able to ride my bicycle about three hundred miles this summer. It has also help with how fast I can ride my bike. Before getting off the food, I was averaging around 8 mph, now I am up to 14 mph. I know that the food allergies were holding me back. I would suggest a full food allergy test just to see what else might be bothering you.

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Please don't let that dopey doctor make you feel like it's all in your head! This is just a doctor, one of far too many, who knows zilch about celiac disease and its effects. Forty years ago my mom was very ill and doctor after doctor told her it was in her head, there was nothing wrong. They were rude and condescending to her. Finally she met a doctor who knew about celiac disease, tested her, confirmed it, and put her on the gluten free diet. Today she's 85 and healthy, still gluten free!

As for me.....I was eating properly and gluten free for over a year until about a month ago, when I started "cheating" and having a bit here and there, and finally more and more, and then KABOOM one morning I woke up with aching muscles and joints, and most especially in my hands. I could hardly move my fingers, it was painful to hold a glass, it was horrible. I knew why immediately....because I already knew gluten made me generally achy, but this was worse than ever before and it totally scared me. I went 100% gluten free again, and now 12 days later most of that pain (although not quite all yet) is gone. My left hand is perfectly fine, but there's still some pain in my right hand. In any case, the writing is on the wall and I know gluten was definitely the cause. Gluten used to give me horrible digestive upsets, and although my system was a bit messed up while I was eating gluten again this time, this pain in my hands (also shoulders and elbows) was new, and I can see that after being away from gluten for a time, then when you have it again the reactions can be different, and can be worse. I guess I could live with the digestive upsets, but this joint thing was awful and sufficiently motivating for me to do what I need to do. Now I just hope I didn't let it go to far, because I've always read that it's easier to PREVENT other autoimmune diseases that can result from untreated gluten sensitivity than it is to cure it once it happens.

This long winded message is to basically tell you to take the aches and pains VERY seriously and take being gluten free very seriously so you can prevent further problems. You are getting signs, that's for sure. And it can definitely get worse, as I just found out.

Hello,

I am a newly diagnosed celiac. I have just come from yet another doctor who is now saying that I am a hypochondriac. I have pain in the muscles of my legs in two places. I can feel that the muscles are tight and there is heat in the places where it hurts. This is something that came on right about the same time I finally got diagnosed with celiac and ulcers. I am taking nexium for the ulcers. Does anyone else have this problem with the sore and tight muscles. It is keeping me up at night but it hurts all day, too. I can see why the doctor might think it is in my head since I have been to so many doctors. Most doctors do not know celiac so I keep going to new ones in an attempt to find one who can tell me what this is. But, seeing all these doctors is something new, only this year after I got diagnosed with celiac disease. I have agreed to see a therapist but only because I am beginning to wonder why one would want to live like this, not because I think it is in my head. Thanks for listening!

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I am taking nexium for the ulcers. Does anyone else have this problem with the sore and tight muscles.

Nexium does exactly that to me.... headaches (dull) and muscle pain...

I found out there are two types, the Esomeprazole which is the AstraZenaca version and plain generic omeparazole.

I read somewhere that the Esomeprazole version is not any better, it was a modification for patent purposes, this might or might not be true. What is true is many people seem to get ide effects with only one fo them. I don't take a lot or often but I can take the generic and it works just as well.

Muscle pain is listed in the product sheet ...

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Hello,

I am a newly diagnosed celiac. I have just come from yet another doctor who is now saying that I am a hypochondriac. I have pain in the muscles of my legs in two places. I can feel that the muscles are tight and there is heat in the places where it hurts. This is something that came on right about the same time I finally got diagnosed with celiac and ulcers. I am taking nexium for the ulcers. Does anyone else have this problem with the sore and tight muscles. It is keeping me up at night but it hurts all day, too. I can see why the doctor might think it is in my head since I have been to so many doctors. Most doctors do not know celiac so I keep going to new ones in an attempt to find one who can tell me what this is. But, seeing all these doctors is something new, only this year after I got diagnosed with celiac disease. I have agreed to see a therapist but only because I am beginning to wonder why one would want to live like this, not because I think it is in my head. Thanks for listening!

IF ANYONE KNOWS MUSCLE PAIN IT'S ME! INFACT I DIDN'T FIND OUT ABOUT MY CELIAC UNTIL I STARTED HAVING THE PAIN. My legs would ache and i wasn't able to walk on my feet for a few months. I saw 26 doctors all of which blew me off and one actually accused me that it was impossible for me to be in so much pain for no reason. Well..... a month ago they finally found out that i had celiac and even though i have been gluten free for that long the pain still hasn't gone away............ I am praying that it at least gets better! Don't let ANY DOC Tell you it's all in your head......... Once you get that vibe from them............... off you go to a DOC who will listen to you and take you seriously.......... Listen I am a nurse (DOC's and Medicine in the US are TOTALLY SCREWED UP) and it took me 26 DOC's to find out that I wasn't crazy, even my psychiatist labeled me as a hypochondriac! Hope this helps and good luck i wish you the best! Justine

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Hi Everyone,

Thank you for all your replies and making me realize I am definitely not alone with this muscle pain! I have been on a gluten free diet since May and the pain is getting worse the longer I am OFF gluten but I am not sure why. I have an appointment with rhematologist on Tuesday but I really don't think she will find anything else - or maybe I hope not! I have appointment Friday with shrink but still feel I need to talk to someone about how I feel, not that I am hypocondriac so I hope he doesn't start saying that or I will be out the door - fast!

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I often wonder about muscle pain with my DD. She's always had really bad growing pains before being diagnosed Celiac. It seems that the pain has flared up now that she is gluten-free. Seems always feels tingling in her legs and her back hurts. It's hard to put myself in her shoes since I am not Celiac and sometimes I don't know if it is for sympathy or if she's really hurting. I do try to give her the benefit of the doubt (she is highly dramatic in all aspects of life). We just saw her GI and she said to make sure she's taking her vitamins to make sure she's getting all the B vitamins normally found in wheat products as well as calcium. She's also going to have her rechecked in six months to see if a DEXA (osteoperosis) test would be in order. The GIs DD sees seem really on top of things and have attacked this Celiac stuff as strongly as we have at home.

I do hope you feel better soon, though. I can only imagine what that pain is like all the time (my mom is a longtime Fibromyalgia sufferer and had a booger of a time getting diagnosed 15 years ago). I suspect she's a Celiac, too, even though her blood tests were negative.

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I am new to this message thing never used one before. I have known that I've had celiac sense 2001. Even though I have been on a gluten free diet for years I still seem to be in pain all the time. I can always feel my intestines. I have pain in all my joints & muscles. sorry I can't spell. Anyone have any sugestions? I can say one thing no one in my family believes that I have celiac disease. Most of the people I meet think I am crazy. I find it hard to find support.

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Check out the Enzymedica web site....I started them and have far less less pain in neck and hands...they are ungodly expensive but so far give me hope...they have a gluten ease one...but i only take it if i think my food has been contaminated...Your best bet is to always be Gluten-free Casein-free but these enzymes might help

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Hi Everyone,

Thank you for all your replies and making me realize I am definitely not alone with this muscle pain! I have been on a gluten free diet since May and the pain is getting worse the longer I am OFF gluten but I am not sure why. I have an appointment with rhematologist on Tuesday but I really don't think she will find anything else - or maybe I hope not! I have appointment Friday with shrink but still feel I need to talk to someone about how I feel, not that I am hypocondriac so I hope he doesn't start saying that or I will be out the door - fast!

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I'd also wonder if you are still taking nexium if you are having side effects. I had horrible pain when I took Prilosec, and similar pain with nexium, though not as severe.

At least I think you should try skipping nexium for a couple of days to see what happens.

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I'd also wonder if you are still taking nexium if you are having side effects. I had horrible pain when I took Prilosec, and similar pain with nexium, though not as severe.

At least I think you should try skipping nexium for a couple of days to see what happens.

Yes, that is exactly what I have decided to do, go off nexium and see if the pain in my leg muscles gets better. The doctor I was seeing (who is an internal medicine doctor) decided to give my 40 mg a day, up from 20 but for no good reason that I could see. I tried to tell her that I have problems with all medications and always have and that is when she said that I am a hypochondriac. Nice, huh? Oh well, I believe that I will have to move on to another doctor! I actually have a GI appointment this month with a doctor who is supposed to specalize in celiac but given my past record with other doctors, I do not hold out much hope for better answers to my questions - especially about the muscle pain!

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OH MY GOODNESS MARGARET.....I swear I also can feel my intestines, what is that all about? You are the first person who I have seen write that, and I am so glad that you did. I have been gluten free for six months now, but my insides feel strange. I also have joint and muscle pain which comes and goes. Something tells me this will be a forever thing now. And your feet, do they hurt the most when you first step out of bed in the morning? Thats when they really bother me. Have you noticed if there is anything that makes you muscles feel better? Janet

Hi Janet,

I'm a highly atopic individual with what seems to be celiac as well. The allergies are pretty well documented whereas the celiac was determined largely through dietary response as I'd been gluten-light for so many years beforehand and now my doctors are claiming that the high levels of atopy are what led to my celiac condition. I don't have enough education in that field to make one claim or another, but that is how it felt, physically, when it happened for me. I had a doctor 30 years ago tell me that pain in the intestines is different...that a knife being put through intestines couldn't be felt, but that when an intestine is stretched, it is felt. I don't know if that is true or not, but not being a doctor, I give the benefit of the doubt. I'm also someone who suffers from carpal tunnel syndrome (actually radial tunnel, which is in the elbows, rather than the wrists - think funny-bone being hit all the time) and I could swear that when my allergies are peaking from environmental factors, which I can't control, the carpal tunnel goes a little bit out of control, too. That gives me pause to wonder. The joint pain I can't really peg down. There is some instance of osteo-arthritis in my family, but the joint pain that I have is more like pain from improper exercising, as in "perfect turnouts" in ballet and too many half-courts during basketball practice in my youth. I can usually compensate for those things if I'm mindful when doing the things that I now do. As for the pain in my foot, it doesn't seem noticeable first thing in the morning, but shows up when I'm doing my healthy walks at lunchtime and I do seem to work it out after the 1/2 hour for the most part, usually. When I was walking with coworkers today, both of them mentioned that phenomenon of the bottom of their feet hurting right when they get up. One coworker attributed it to the cheap shoes that she's wont to buy. It didn't sound like what I think is probably peripheral neuropathy. The best thing that I've found for making the muscles feel better is exercise and sometimes, not too much of it. I did a 3-day kayak just a few weeks ago and while hauling a kayak through the woods half-loaded and then hauling stuff at work, ended up with a pinched nerve right above my left shoulder-blade. After a few days of rest, I found that doing my healthy walk *only* really helped things calm down a bit. The headache is most likely from environmental allergic reactions. I run a low-grade fever throughout these times and sometimes my medical people are leary of giving me my allergy shots because of that, but I always tell them, "I need my meds." and they do. :)

Hope that helps, aren't autoimmune disorders just the best?

Sorry for the long-winded post and the late reply. Are you finding some relief, I hope?

Try different things, there's always a different approach,

Margaret

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