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      Frequently Asked Questions About Celiac Disease   09/30/2015

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

Severe Muscle Pain
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Anyone else struggle with muscle pain and tightness? I'm under threats from my cardiologist to get off my butt and move but no matter how much I stretch before and after the pain is almost unbearable. I have a history of torn muscles in my calves from as little as changing direction too fast. The doctor couldn't believe it happened that way even seeing the swelling and bruising, then said there was nothing to be done but build up muscle. But I can't seem to "build" out of the pain. Thanks

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See my signature. Severe pain for over 5 years. Have seen all sorts of specialists, physios, massage therapists, had laser, acupuncture and have tried over 15 prescriptions. I lie on the floor to watch tv, lie down in the vehicle etc. The best thing is stretching but many days that is impossible. So, I feel for you. Have you tried muscle relaxants? Do you take magnesium? That is the only thing that helps my calf cramps. Worth looking into.

Hopefully this does not last long. Oh, yes. Do you get/take calcium? Very key in muscle pain. The best of luck to you! :)

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Like Love2, I suffer from intense muscle, bone and joint pain.

I had a major loss of muscle mass from undiagnosed celiac.

I've been in physical rehabilitation for over 2 years as a result. Just opening a jar was difficult for awhile.

Walking the length of my driveway was impossible.

Malabsorption wreaks havoc on connective tissue, ligaments, tendons, too.

Your cardio doctor suggests powering through the pain, but this is not necessarily wise.

He is not taking into account that your muscle integrity has been compromised because of malabsorption (common in doctors who do not

fully understand or acknowledge the ramifications of celiac) I was chastised for 3 years before my DX to get some exercise , so I would work out at the gym and have my feet, legs and spine go numb and I fell off a treadmill. How was this helpful?

Since my DX, I have been advised the opposite. My GI doc says "take it slow until you can handle it and not create more problems".

Yes, you definitely should keep moving as you could suffer muscle atrophy otherwise Try some gentle stretches, gentle yoga, massage, physical therapy, heat and cold packs, proper supplementation. Gut healing is key to getting some stamina and beginning an exercise regime..

Try a treadmill. Slowly at first, then work your way up.

Muscles that are in spasm cannot be overworked. You'll just develop painful trigger points (believe me, I am loaded with them)

and so, just start slowly and work your way up. Your body has been ill and it needs coaxing, not bullying.

I am finally back at the gym and seeing some progress. But I won't lie. It still hurts and I know I have a long way to go before my muscles are conditioned and back to where they were before 25+years of malnutrition made them so vulnerable to injury.

Good luck and hang in there!

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Pretty much ditto what IH said. I just found out I am hyper mobile in my major joints (shoulders, hips, knees). I have loose ligaments and tight tendons and I DON'T FEEL IT WHEN I OVEREXERT MY TENDONS/LIGAMENTS. And that is the worst part. It registers as "muscle pain".

Just spent a few miserable months recovering from an almost torn ligament/strained tendon and torn bicep. Guess what??? When working out it registered as "muscle" -as in pushing the muscle. And the muscles did hurt...but that was just the beginning.

Anyhoo...Celiac affects connective tissue when it robs us of nutrients. It also messes with the adrenals and hormones since its AI disease. Translation: tissue weakness.

My massage therapist told me Pilates and isometrics. No yoga (because I'm hypermobile) and very light weights. I also had to work in my posture, which believe it or not has changed EVERYTHING. My workouts are much more effective-even walking on the treadmill is a new experience. I work my core and legs more effectively.

Anyway, I'm not saying you are hypermobile but there is a high probability your tissue (muscle/ligaments/tendons) are not functioning correctly. I wish id known that and started with isometrics and Pilates with gentle cardio. I have found my core is VERY weak. And when you have a weak core it impacts your balance and how accurately and effectively you work other muscles. I can not overstate the importance of building your core as you start working out/rehab. If your core is weak you will injure yourself more doing other exercises. Period.

And if you think you can't work it with isometrics you haven't done the right workout. And Pilates...yeah, I'm still doing them at home trying to strengthen my arms/shoulder before I go back to a class. It was comical. And I had been working out 3+ x per week for 5 months!!!!

In the beginning I thought I'd die. Seriously. I overdid it. Napped every day. I have learned every other day, max. And I must really warm up before - I do 30 min of cardio before attempting any weights. Isometrics and Pilates I can do before cardio but I MUST stretch before AND after to prevent soreness.

You may also need to work on adrenals and hormones if you keep hitting a wall. But overall, working out is the BEST thing I have done for my recovery.

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To add to this great advice already given, warm pool therapy is very soothing and will let you stretch and work your muscles. It is extremely low Impact. And it works, I am proof. Usually ymca's have one.

Good luck.

Colleen

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Me too. for years. Cann't seem to get rid of the pain either. My PCP thinks I'm not doing exercises properly. Go see a personnal trainer, he says. I've been careful not to pull a muscle or break any bones. I know what my limits are with weight training and interval treadmill walking. Just keep moving!

My pain is more in the shoulders and neck area. Probable cause of headache. Might be chronic stress of every day living. I don't know? Pain never Dx'ed.

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Me too. for years. Cann't seem to get rid of the pain either. My PCP thinks I'm not doing exercises properly. Go see a personnal trainer, he says. I've been careful not to pull a muscle or break any bones. I know what my limits are with weight training and interval treadmill walking. Just keep moving!

My pain is more in the shoulders and neck area. Probable cause of headache. Might be chronic stress of every day living. I don't know? Pain never Dx'ed.

I suggest an orthopedic massage from a therapist experienced in that modality and has trained in other modalities. Mine showed my specific exercises to strengthen/stretch neck and shoulder areas - and to fix my posture.

I was sore for a month "retraining" my posture but now I am mostly pain free.

That woman saved my sanity.

And you probably aren't doing exercises properly. Sometimes a trainer can help fix it. Other times they don't see it. My problem was my weak core and I was compensating with other muscles.

Now that I'm strengthening my core, I compensate less. And by fixing my posture I'm maintaining a pain free shoulder/neck, and now am able to work the muscles I target (instead of compensating).

I honestly would stare at the charts on the weight machines , do a rep slowly, and try over and over to hit the target area and never do it. NOW I do :).

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I suggest an orthopedic massage from a therapist.

I was sore for a month "retraining" my posture but now I am mostly pain free.

And you probably aren't doing exercises properly. Sometimes a trainer can help fix it. Other times they don't see it.

Hum! posture. Food for more thought(gluten-free, of course :) ) Maybe it's time for a massage. My next PCP appointment is Feb. 28. I'll get a referral for a therapist.

My local YMCA offers personnal training instruction @ $450/10 sessions. For better health, what's a few more out-of -pocket $$$$$.

Thanks for the enlightenment.

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Wow, thank you all so much. Just reading others have gone through what I am makes me feel so much better. Yes, exactly, I went so long undiagnosed by the time they tested (genetics show 2genes and dr who suggested tests only did because she has Celiac) I had no trace at all of some nutrients. Muscles had started atrophy and I needed help walking down stairs/hills. That was 4 year's ago but I seem extra sensitive ( so dr says) and get reactions so often from miniscule exposures. Yes, I've been told I'm hypermobile in my pelvic area and have wondered why it doesn't hurt during that part of exercise/activity till later. Then I have to sit with heat trying not to move. My leg muscles just don't seem to want to stretch and release but PT, Physiotherapist, Acupuncture, Chiropractor, Pain Specialist (loved that idiot, said he didn't know what Celiac was, didn't teach in school which could be true but then said it wouldn't affect inflammation and pain so I had Fibromyalgia) I've tried so much but feels like no progress and told I should give up my beloved weaving time. I'm comforted by the posts and will reread and list ideas I haven't tried. THANK YOU

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Pain Specialist (loved that idiot, said he didn't know what Celiac was, didn't teach in school which could be true but then said it wouldn't affect inflammation and pain so I had Fibromyalgia) I've tried so much but feels like no progress and told I should give up my beloved weaving time. I'm comforted by the posts and will reread and list ideas I haven't tried. THANK YOU

Do not get me started on the wastebasket syndrome of Fibromyalgia (which just means "weak" muscles")

2 pain management docs told me "I do not believe it exists"

DUH ! No sh*t doc! so, why are those muscles weak??? (well, now I know: vitamin deficiencies, malabsorption, etc)

"Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression"

Yup, well, so is CELIAC. (that is why they call it the "great mimic")

I was told to get a "scooter or HoverRound " and "accept my fate". Nah!!!!

In the last month, (2 years after almost dying) I returned to the gym, lifted 5 lbs. weights, and did 9 machines that are for strength training...I also do yoga ... and last summer, I kayaked! I could not barely move without pain and gasping for breath at one point. I was nearly dead.

Do NOT listen to this malarkey!! Celiac may impact your muscles, nerves & bones...but you can get it back!! Never say die! :)

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Wow, thank you all so much. Just reading others have gone through what I am makes me feel so much better. Yes, exactly, I went so long undiagnosed by the time they tested (genetics show 2genes and dr who suggested tests only did because she has Celiac) I had no trace at all of some nutrients. Muscles had started atrophy and I needed help walking down stairs/hills. That was 4 year's ago but I seem extra sensitive ( so dr says) and get reactions so often from miniscule exposures. Yes, I've been told I'm hypermobile in my pelvic area and have wondered why it doesn't hurt during that part of exercise/activity till later. Then I have to sit with heat trying not to move. My leg muscles just don't seem to want to stretch and release but PT, Physiotherapist, Acupuncture, Chiropractor, Pain Specialist (loved that idiot, said he didn't know what Celiac was, didn't teach in school which could be true but then said it wouldn't affect inflammation and pain so I had Fibromyalgia) I've tried so much but feels like no progress and told I should give up my beloved weaving time. I'm comforted by the posts and will reread and list ideas I haven't tried. THANK YOU

I know the heat feels good but you really do need to ice the inflamed areas to reduce swelling.

Sorry. I hate ice. I understand. Wanted to gut my husband every time he pointed it out to me. But it does work.

And if you know you're hypermobile in your pelvis you definitely need to work on your core. I'm sure it will help you stabilize your body, not to mention strengthen. Less chance you'll hurt yourself doing other things.

Be careful with your other big joints, just in case.

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Hum! posture. Food for more thought(gluten-free, of course :) ) Maybe it's time for a massage. My next PCP appointment is Feb. 28. I'll get a referral for a therapist.

My local YMCA offers personnal training instruction @ $450/10 sessions. For better health, what's a few more out-of -pocket $$$$$.

Thanks for the enlightenment.

Prior to your visit google "orthopedic massage" for your area and see who comes up. It may be difficult to find a therapist on insurance. But trust me, it's worth it.

Orthopedic is a particular modality. The practitioner must be trained in the technique. Mine explained how in areas I'm tight, I'm also loose on the other side. My upper chest muscles were too tight so I hunched over, my back shoulder muscles were over stretched and loose. I had to adjust my posture to stretch my chest and tighten my back, and pull my neck back snd up. It hurt to maintain it (like working out 24/7) but hurt worse to not do it. She gave me neck stretches and back exercises, too.

I still have a few issues, need another massage, but I'm 90% better. And I can move and work out!

When it comes to trainers you should *try* to find one experienced working on rehabbing people. You must be hyper vigilant about explaining your limits. Don't let a trainer talk you into doing things too fast, too much. Exercise your ability to say no:).

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Do not get me started on the wastebasket syndrome of Fibromyalgia (which just means "weak" muscles")

2 pain management docs told me "I do not believe it exists"

DUH ! No sh*t doc! so, why are those muscles weak??? (well, now I know: vitamin deficiencies, malabsorption, etc)

"Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression"

Yup, well, so is CELIAC. (that is why they call it the "great mimic")

I was told to get a "scooter or HoverRound " and "accept my fate". Nah!!!!

In the last month, (2 years after almost dying) I returned to the gym, lifted 5 lbs. weights, and did 9 machines that are for strength training...I also do yoga ... and last summer, I kayaked! I could not barely move without pain and gasping for breath at one point. I was nearly dead.

Do NOT listen to this malarkey!! Celiac may impact your muscles, nerves & bones...but you can get it back!! Never say die! :)

I'm so glad you're doing well and having fun. Makes all the difference, doesn't it?

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Ice for new injuries and inflammation.

Heat for old injuries.,,, and chronic achy stuff.

Ice for nervy pain. Never heat.

Migraines? COLD on your neck and occipital muscles to reduce the neck inflammation.

painful tendons? alternate Hot and cold --1 minute each, 6 minutes total ...finishing with heat and STRETCH gently!!

I nearly broke my ankle last fall. I had parasthesia and I stood up and my ankle folded under me and I heard CRACK CRACK CRACK!

I almost vomited and fainted.

ER Doc said it would have been easier if I had just broken it, so he could set it. When it is tissue, muscle, tendons and with celiac? well, it will

take some time to heal. Maybe never. I said...not acceptable, doc.

My Massage therapist ( also a nurse and a celiac) said..naw.! Do this: cold and heat 1 minute each and end on heat and do circles with your ankle. I was healed in 2 weeks after being in pain for 6 MONTHS.

Believe you can heal and find the right person to work with you. Never say die!

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I'm so glad you're doing well and having fun. Makes all the difference, doesn't it?

I have my life back. I was almost dead, really. Now I am not. :)

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Ice for new injuries and inflammation.

Heat for old injuries.,,, and chronic achy stuff.

Ice for nervy pain. Never heat.

Migraines? COLD on your neck and occipital muscles to reduce the neck inflammation.

painful tendons? alternate Hot and cold --1 minute each, 6 minutes total ...finishing with heat and STRETCH gently!!

I nearly broke my ankle last fall. I had parasthesia and I stood up and my ankle folded under me and I heard CRACK CRACK CRACK!

I almost vomited and fainted.

ER Doc said it would have been easier if I had just broken it, so he could set it. When it is tissue, muscle, tendons and with celiac? well, it will

take some time to heal. Maybe never. I said...not acceptable, doc.

My Massage therapist ( also a nurse and a celiac) said..naw.! Do this: cold and heat 1 minute each and end on heat and do circles with your ankle. I was healed in 2 weeks after being in pain for 6 MONTHS.

Believe you can heal and find the right person to work with you. Never say die!

Thanks for the breakdown on the ice/heat. I always wonder...and I'm glad you healed so quickly.

Of course, would be easier if I knew what I screwed up...since both ligaments and tendons are wonky....but oh welll....

I have found, for what I damage, ice is better. Hot showers are the extent of the heat.

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I have found, for what I damage, ice is better. Hot showers are the extent of the heat.

Just sharing her expertise. ;)

I also had SEVERE pelvic floor dysfunction. That was treated by a separate PT who specializes in male and female pelvic pain.

I found her by googling my face off. No Doc could help me with that pain. I cried rivers from that pain.

She helped save me from a life bent over as" little old lady. "

not kidding, guys....PT can save your life. Do NOT buy the "well, that's just the way it is" crap. I had a UroGYN tell me "take this drug (neurontin) and accept you have this burning genital and pelvic pain and that's that" waa? no way!

Total Bullsh*t. Pain? It is gone--but I did 2 years in PT and gut healing time also helps.

I would have been doped up my whole life had I listened to those idiots.

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Hi

Tagging along again with 'me too'.

Have never heard of hypermobile before but have been told that the bones in my feet and ankles are really mobile and my neck very mobile (had I been a trapeze artist/gymnast? asked chiropractor once!) Have trouble with neck/shoulders but will no longer have neck manipulated!

I too have had muscle pain in recent years and suffer tendon trouble too in right arm/shoulder especially.

My brother (celiac) snapped his achilles tendon while swimming.

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