Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Muscle Amd Joint Pain


Janeti

Recommended Posts

Janeti Apprentice

Help!!! I just don't understand why I still get the muscle pain that comes and goes. Sometimes mild, sometimes I get get my mind off of how uncomfortable I am. The joint pains comes and goes and sometimes I get swelling also. I am being so careful, and taking vitamins, including magnesium for my muscles. In the morning when I wake up, I just lay in bed and I can feel all the muscles twitching. Its been 6 months, and I don't know what else to do. Does anyone have this problem? Or does anyone have any suggestions? :( Janet


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Have you had a follow up appointment with your doctor? Have your antibody levels been checked to see how well you are responding to the diet? Are you getting glutened or are pretty much 100% gluten-free? Vitamin/mineral levels checked?

I would be concerned that something else is going on, and would see my doctor to talk about these issues. Sometimes we attribute all of our symptoms to Celiac, when there may be something else going on, that we overlook.

gfpaperdoll Rookie

what types of food are you eating? Are you dairy free? soy free?

are you eating white potatoes? They are known to cause joint pain.

Are you eating a lot of beans? They are high in lectins. Are you cooking beans in a crockpot? not a good idea as they need a high heat to break down the lectins & they need to be cooked well done.

are you eating any of the gluten free grains???? gluten-free mixes for breads etc????

Janeti Apprentice
what types of food are you eating? Are you dairy free? soy free?

are you eating white potatoes? They are known to cause joint pain.

Are you eating a lot of beans? They are high in lectins. Are you cooking beans in a crockpot? not a good idea as they need a high heat to break down the lectins & they need to be cooked well done.

are you eating any of the gluten free grains???? gluten-free mixes for breads etc????

I should have mentioned that I also have candida. But the answer to most of the questions are yes.

I know better, I should be staying away from potatoes, but the gluten free mixes are not good also?Why are they a problem? I also ate out Saturday night, and as soon as we were done I had a stomach ache...glutened....I am sure. The next day, running to the bathroom, and muscle pains. I think that its leaky gut.

I hate going to the Dr, I get scared. I will stay away from potatoes, and see if it helps. I guess I know it's time for a Dr visit, but I just want this whole mess to go away...know what I mean? Janet

CarlaB Enthusiast

Could you be magnesium deficient? You can safely supplement mag., so I would to see if it helps. Don't get the kind mixed with calcium, get one that's all magnesium.

If this continues even when you're not glutened, I would be very concerned that something else is going on. Many of us have other problems along with our gluten intolerance.

I would get strictly on an anti-candida diet and take probiotics to see if that helps.

mftnchn Explorer

Hi Janet.

I think these are all good things to check out. You could keep a food diary and see if there was any change in symptoms.

If it was me, I would first do an elimination by food group. First dairy, if no relief then eliminate all grains, if no relief eliminate all legumes, if no relief eliminate all nightshades. The other food I would check is eggs. This approach would cover the most common food intolerances. If this doesn't bring any relief, you could consider additives, colorings, etc. Try only organic whole foods for 10 days and see if that makes a difference.

When you eliminate, make sure you have absolutely none for 5-10 days. I would suggest at least 7, because joint symptoms tend to be slower to clear and slower to come on. If you clear up, add an item one at a time and watch for symptoms (a cautious approach would be to add one item every 4 days). If you don't clear up, start eating the food group again for a week and see if you have any worsening of symptoms. If no change go to the next food group.

You can also consider the possibility of lyme disease which is also notorious for causing joint and muscle symptoms. Have you ever noticed that being on antibiotics improves your worsens your joint symtpoms?

Janeti Apprentice
Hi Janet.

I think these are all good things to check out. You could keep a food diary and see if there was any change in symptoms.

If it was me, I would first do an elimination by food group. First dairy, if no relief then eliminate all grains, if no relief eliminate all legumes, if no relief eliminate all nightshades. The other food I would check is eggs. This approach would cover the most common food intolerances. If this doesn't bring any relief, you could consider additives, colorings, etc. Try only organic whole foods for 10 days and see if that makes a difference.

When you eliminate, make sure you have absolutely none for 5-10 days. I would suggest at least 7, because joint symptoms tend to be slower to clear and slower to come on. If you clear up, add an item one at a time and watch for symptoms (a cautious approach would be to add one item every 4 days). If you don't clear up, start eating the food group again for a week and see if you have any worsening of symptoms. If no change go to the next food group.

You can also consider the possibility of lyme disease which is also notorious for causing joint and muscle symptoms. Have you ever noticed that being on antibiotics improves your worsens your joint symtpoms?

Hello,

I want to thank you all for your responses, especially GFPAPERDOLL, you were right!!!! It is the potatoes. I just can't tolerate them. I think that is the strangest thing, but it works. I haven't had any in a couple of days, and I am feeling much better.

I can't tell you all how much this site means to me. It is a source of comfort. Thank you all again :D Janet


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mftnchn Explorer

Good, thanks for letting us know. Potatoes are from the nightshade family, so if you continue to have problems you could check those. Most common beside potato would be tomato and green pepper.

  • 2 weeks later...
QTPYE4YOU Newbie
Help!!! I just don't understand why I still get the muscle pain that comes and goes. Sometimes mild, sometimes I get get my mind off of how uncomfortable I am. The joint pains comes and goes and sometimes I get swelling also. I am being so careful, and taking vitamins, including magnesium for my muscles. In the morning when I wake up, I just lay in bed and I can feel all the muscles twitching. Its been 6 months, and I don't know what else to do. Does anyone have this problem? Or does anyone have any suggestions? :( Janet

So does anyone know what is going on with you ? I kind of have the sdame thing goign on as you .... BTW I am Blair ---Let me know ?

Janeti Apprentice
So does anyone know what is going on with you ? I kind of have the sdame thing goign on as you .... BTW I am Blair ---Let me know ?

Hello Blair,

Yes, I also have systemic candida, which causes a host of problems. They include, muscle and joint pain. At one time, when I got out of bed, my arm was in such pain, I had to help lift it. brain fog, headaches, body rashes, canker sores, hormone problems, and the list goes on and on. It's amazing what it does to you, and it is closely linked with celiacs. I hope this helps you, and if you need any further info, you can always google it. Good luck, Janet

DeerGirl Apprentice
Have you had a follow up appointment with your doctor? ......... Are you getting glutened or are pretty much 100% gluten-free? Vitamin/mineral levels checked?

I would second happygirl's comments here. Sounds like it could be any of a number of vitamin or mineral deficiencies, easy for your doctor to check this out.

Janeti Apprentice
I would second happygirl's comments here. Sounds like it could be any of a number of vitamin or mineral deficiencies, easy for your doctor to check this out.

It is time for some blood work to be done, probaly next week. The amazing thing about celiacs, is that since I have gone gluten free, my hasimotos is kind of at a stand still. I still have the antibodies, but my TSH has stabilized. Sounds crazy, I know. So the blood work should be interesting, but I still get nervous at the results...Janet

DeerGirl Apprentice
It is time for some blood work to be done, probaly next week. The amazing thing about celiacs, is that since I have gone gluten free, my hasimotos is kind of at a stand still. I still have the antibodies, but my TSH has stabilized. Sounds crazy, I know. So the blood work should be interesting, but I still get nervous at the results...Janet

Janeti - good luck with the testing, hopefully your dr will have some ideas as to what is going on for you.

tom Contributor

Yes good luck w/ the tests!

And I second the idea of keeping a food/symptom diary.

It can really make it easy to spot some of these things.

VRB Newbie

Hi

In response to following up with a doctor. Do you know what type of doctor would be best for getting the correct blood work done? I have found that a general doctor seems to only be interested in seeing if your vitamin D results are good. There are many many other vitamins and minerals that we are missing now that we are Gluten Free. In fact after being diagnosed with Osteoporisis at 45, my general doctor did not even mention malabsorption issues. He just perscribed Actonel and sent me home. I learned about gluten intolerance from a "Chiropractor".

Janeti Apprentice

I guess that a GI Dr should know what to look for. I just went to my primary Dr, he did a basic, vit

b12, d, cbc sed rate, thyroid(I have hashimotos). I guess from that they can tell if you are absorbing, or what you are missing. Maybe you should look into taking vitamis. Before I was diagnosed, my vit d was non existant. I take viactiv, magnesium, sublingual b12, co-q10. I also take probiotics. I think suppliments are so important while you are healing, and then some. Good luck, Janet

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.