Celiac Disease Support Group

Try taking gf calcium/magnesium supplements for your leg pain.

This is caused by your bodies natural defenses. When malnurished, the body saves all nutrition for the critical organs. That is NOT your legs.

PLEASE, please, please, stop eating gluten. My diagnosis did not come until I could no longer walk. By that time, permanent damage had occured. I have constant nerve pain that will never go away.

I hate to see anyone else suffer like I am. You need all the nutrition that you eat.

I have had Celiac disease all my life. I was always sick until I got on the diet.

I had lots of allergies including hay fever that have gone away with STRICT adherence to the GF diet. They were all medically diagnosed. Now they are all gone.

I hope you feel better soon and some of your allergies go away like mine did.

Catlovesdi: You mentioned nerve damage. Hubby is suffering from neuropathy in his feet, with pain going on up the leg. I can't think of the name of the med they recently prescribed for inflammed nerve endings. Can you please give me more information on this? He has had Celiac (DH) for many years, and no longer has to take Dapsone since the last 8 or 9 months.

I had no nerve signals traveling to my feet. The nerves heal but create little masses of nerve endings that cause very severe pain. it's like they grow twisted up when they grow back. That causes pain.

I take three meds at low doses to make it tolerable. Nothing will ever take the pain completely away. For me what happens is that the meds are every 8 hours. The pain comes back long before that. So when the meds start working again, I feel better "enough" to do some house work. It is just because of the difference in pain level that I can function.

They have recently started with Lyrica for this type of pain. But I had a bleeding ulcer so the docs won't try new meds on me.
I understand that it works really well although some people have severe swelling in the legs.

Thanks for writing about this. I was having severe bone pain (mainly in my hips) and was having major difficulties walking. Thanks for the calcium tip (i'm also taking vitamen D because I wasn't absorbing it). AS soon as I stopped eating gluten -- the bone pain went away!

Leg pain: get a plug in heatpack. they have low, medium, and high settings.. theyre about 20 dollars and come with a soft cover. put it across your thighs or wherever hurts for about 5/10 minutes on high with a cover. it helps SO much. i have celiac and i get cramps like you wouldnt believe.. this and aleve arethe only things that help.. stretching when you get it at night helps too

this is so very interesting to me as I have had the celiac dx now for nigh on 20 years, was diagnosed at the end of my 24th year, but was a very sickly child - but not a celiac baby, so at age 10 was told I had diverticulitis, but skipping nuts, seeds... did nothing to stop my gut pain and indigestion difficulties... I had a host of neurological episodes between the ages of 16-19... then from age 22-24 was so dreadfully sick and thin and in pain and had terrible bruising on my legs from coughing (my childhood sicknesses were mostly from strepp, so they yanked my tonsils, then I started having chronic bronchitis) I went to a new doc when I was 22, because of the bronchitis. I couldn't stay in college classes due to coughing so hard and no ability to breathe, so I would step out for a few minutes, try to get under contol... come back to class and my desk would be littered with hard candy and cough drops... while waiting for my appt in the waiting room, coughing and choking... the doc came out and said who's coughing like this? and said you are coughing WAY too much and gave me an inhaler sample right there and showed me how to use it. it worked. i stopped coughing. the inhaler worked for about 1 years to prevent the bronchitis, and then i had a reaction to the inhaler and couldn't breathe for 8 hours, even the ER folks couldn't stop it. My legs hurt like you wouldn't believe and they were almost completely purple from bruising. That's when all the testing started. It took almost 2 years from there to rule out everything else and the small bowel biopsy confirmed - my villi were gone in large patches and several feet of my small bowel were bald. my villi were not lying down as is the case with many celiacs. they were gone and took over two years to recover - still shorter than normal after 2 years, but no bald spots. going GF made all the difference in the world, however, I still had mild neurological symptoms that I chalked up to just being "me", and as I got older, wrote off as aging. For the past 19 months almost now... my neuro sypmtoms have gotten so much worse. Started with leg pain and weakness and fatigue, but it cleared up when the summer ended and the weather cooled significantly. However, it returned the following spring and was way worse, pain in my whole body. Brain MRI showed 10 lesions. don't have the results of the C-T spine MRI yet, should have them Monday or Tuesday, as my Neuro went on vacation this week :*( , but he does say that I have MS, based on my past history and the brain MRI, BUT he's not sure which is causing my current problem, MS or CD, as my brain lesions are not enflamed, and since we don't know yet if the spine has lesions or if they are enflamed, it's just a waiting game... Neurontin (nerve pain med) and Tizanidine (muscle relaxer) works well to control most of my pain, and allows me to continue working 6 days a week. it doesn't help much with the tingling and stabbing/squeezing pain that i have, but i can cope with this for the time being until they figure out which is going on. Cross-contamination is a huge issue, and we have discovered areas in my home where I could have ingested gluten (toaster oven). Sorry to go on and on... but I just find this so crazy, and the 2 dx's have so many similarities... I hope you find answers soon, being in pain daily is no way to live. Peace* Ann

Muscle and bone pain are my two very first symptoms of being glutened. The pain may last up to 7 days depending on how much gluten I ingested. I haven't been glutened in ages and I surely don't miss the side effects. Take care of yourself. Like Tob advised calcium/magnesium really does help.