Joint/muscle/bone Pain

[Caitlin]

I have struggled with joint pain since I was a little girl, I was diagnosed with celiac disease February 26, 2006 and have been gluten-free ever since, however I am still experiencing extreme pain in my joints. Sometimes it feels like its radiating dull constant pain that comes in waves for hours and lasts for days unless I take narcs. It worsens at night, any weather changes, winter, spring, and fall. It is less in the summer although if its too hot it comes up too. I have been to several rhuematologists, neurologists and have been tested for arthritis, osteoarthritis and they say that im too young to have osteoporosis and discussed lupus and MS but never looked into it. My last rheumatologist diagnosed me with Ehler's Danlos Syndrome type 2A, there are over 30 types of ED and is also known as hypermobility. The pain is tolerable some days and other days I cry myself to sleep because tramadol is not enough and my doc refuses to give me anything else. I have to "borrow" either darvoset or vicodin from my family bc the pain is so bad i can barely walk or move and feel so weak. I am wondering if there is any other Celiac's out there with this problem after they have been gluten free for a while or if I should go find another doctor and get another opinion. My mom is starting to think again that it isn't Ehler's Danlos and i need to go somewhere else. I also wonder if the pain is just a side effect of having Celiac disease, or an autoimmune disorder, or maybe its just Chronic pain? Any comments or emails would be greatly appretiated!

Caitlin

Diagnosed 02/26/2006, gluten-free since!

[Wolicki]

You need another doctor! Telling a Celiac patient that they are too young for osteoporosis is like saying a 12 year old can't get pregnant! It's either ignorance or arrogance Osteoporosis if VERY common in Celiac. I was dxed with osteo at 32! I wo would also get a new rheumy and ask to have your SED rate and ANA's checked. It ticks me off that they have "discussed" lupus and others and not looked into it. ARggghhhhh! Doctors make me so mad!

Also ask for a complete nutritional/metabolic/electrolyte panel. Many deficiencies can cause these problems. Also you may want to look into finding an Osteopathic Doctor. They're MD's, but focus more on the whole person.

Be well,

Janie

[NE Mom]

Caitlin,

I'm wondering how your overall health has been? Do you have frequent infections or does it take a long time for you to get over an infection?

My daughter was dx'd this year with a primary immune deficiency disease called Common Variable Immune Deficiency. One of her main symptoms has been joint/leg pain. She also has multiple food and environmental allergies-overall her immune system is completely out of whack.

We see an Immunologist for CVID. You can learn more about this at www.jmfworld.com or www.primaryimmune.org

A panel of blood tests can be done to check the health of your immune system. It includes IgG, IgG subclasses, IgA, IgM, IgE, Pneumococcal Titers Test etc.... You can actually see a complete list on the jmfworld website.

Sam

[Caitlin]

Caitlin,

I'm wondering how your overall health has been? Do you have frequent infections or does it take a long time for you to get over an infection?

My daughter was dx'd this year with a primary immune deficiency disease called Common Variable Immune Deficiency. One of her main symptoms has been joint/leg pain. She also has multiple food and environmental allergies-overall her immune system is completely out of whack.

We see an Immunologist for CVID. You can learn more about this at www.jmfworld.com or www.primaryimmune.org

A panel of blood tests can be done to check the health of your immune system. It includes IgG, IgG subclasses, IgA, IgM, IgE, Pneumococcal Titers Test etc.... You can actually see a complete list on the jmfworld website.

Sam

My overall health has actually been okay besides the exhausting pain i haven't gotten a cold or flu (*knock on wood) so far and looked at the different diseases and i haven't really had their "top ten" warning signs. but i definetly agree about getting another doctor!!

[Caitlin]

You need another doctor! Telling a Celiac patient that they are too young for osteoporosis is like saying a 12 year old can't get pregnant! It's either ignorance or arrogance Osteoporosis if VERY common in Celiac. I was dxed with osteo at 32! I wo would also get a new rheumy and ask to have your SED rate and ANA's checked. It ticks me off that they have "discussed" lupus and others and not looked into it. ARggghhhhh! Doctors make me so mad!

Also ask for a complete nutritional/metabolic/electrolyte panel. Many deficiencies can cause these problems. Also you may want to look into finding an Osteopathic Doctor. They're MD's, but focus more on the whole person.

Be well,

Janie

THANK YOU~!! I totally agree with you...i hate it when they say i'm too young for that kind of stuff, when honestly i want to cut my legs off some days because i think that would get rid of the pain i am in!! Thanks for the advice! I really hope i can find a good doctor soon!

[ravenwoodglass]

THANK YOU~!! I totally agree with you...i hate it when they say i'm too young for that kind of stuff, when honestly i want to cut my legs off some days because i think that would get rid of the pain i am in!! Thanks for the advice! I really hope i can find a good doctor soon!

I do agree you need a new doctor. If nothing else they should be referring you to a pain clinic. I know the pain you are talking about. I used to have nightmares in childhood where my legs were being cut off. Doctors told my Mom I had growing pains. They weren't growing pains. I would lay in bed and just scream. I also have ED, have they sent you to a physical therapist? He can assess how you are moving and standing to compensate for the ED. I for example never straighten my legs when walking or standing. I have balance issues so that is also to help compensate for that. I was shown excercises to do that strengthen the muscles around the loose joints which helps to stabalize them.

Have they been monitoring your B12 levels? Many of us has problems with low levels that can take awhile to show up in blood tests. You may want to consider supplementing with sublingual B12. If your pain is nerve related that can help them heal. Have the doctors check you vitamin levels in general including D if they will.

What symptoms do you have that made them think you might have MS? Did you have an MRI?

I do hope you get some relief from the pain soon. For myself I had to be really, really strict to see my bone pain totally resolve. I was lucky but I did find I have to avoid gluten in topicals, distilled vinegars and alcohols and be really careful about CC. I also found I had to drop soy. If you eat soy you may want to consider dropping it for a month or so and seeing if that makes a difference. Another thing that helped a bit was acupuncture. That might be something to consider too.

[txplowgirl]

Have you tried eliminating the nightshade veggies, ie potatoe, tomato, eggplant, all peppers? These will cause joint pain and swelling. Just a thought.

[camoflauge]

Do a search for fibromyalgia. some of your symptoms sound exactly like what i deal with. fibromyalgia pain really changes from day to day-depending on weather, stress, eating foods your body has an intolerance to-such as dairy-my body hurts worse if i eat any dairy at all.

headaches can be unbearable, pain can be in any of the "tender" points and can switch from one spot to another. my legs feel like they are on fire sometimes-i am on my feet all day at work.

The fatigue is riddiculous some days-I feel like I could sleep all day and still not be refreshed.

I am also "too young" to feel this darn old-I am only 36 years old, but with Fibromyalgia, some days I feel like I'm 65 because I can barely move.

Good luck-sounds like you may need to find a new doctor. I am going to see a rheumatologist in a few weeks.

Heather

[horsegirl]

I have struggled with intermittent, sometimes severe pain even after being gluten free for over 3 years too. I have accepted that while I do have gluten intolerance, I also do have fibromyalgia, & that sometimes it's going to flare up, regardless of what I eat.

I completely agree with the other posts about finding a different doctor, having additional blood tests done, etc. I recently started seeing an osteopath too, & believe he has some answers other docs didn't.

I agree with the post about stopping soy for awhile too; I found it was causing the pain from my osteoarthritis (which was diagnosed at age 35!) to be much worse.

Good luck, & keep us posted.

[RiceGuy]

The three things I found which totally eliminated the pains I was having are:

1) Staying away from all nightshade foods.

2) Taking magnesium daily

3) Taking a 5mg methyl B12 sublingual tablet daily.

And do try avoiding other top 8 allergen foods (dairy, soy, corn, eggs, nuts, peanuts, shellfish). Start out off of all these, and see how you feel. If you feel better, try each, one at a time, and you should be able to narrow down the culprit(s).

I hope you feel better soon!

[patfrank]

Caitlin, Have you checked to make sure you are not getting gluten through some medication, vitamin etc.? I was only diagnosed in late Sept of 09. However, I have worked very hard at be certain I am gluten free. I have had period joint and muscle pain for years and was hopeful it would be gone once I was gluten free. I recently had another episode of pain. My regular doctor, not my gastrologist, suggested some medication may still have a small amount of gluten in it. He said, it could cause considerable joint and muscle pain. Just a thought, but if you have been gluten free for so long, you probably already know all of this.

[Fiddle-Faddle]

Many celiacs with the joint-muscle pain find that they need to eliminate dairy--ALL dairy, not just lactose--as well as gluten.

Some of these people are able to successfully add dairy back into their diets later. Apparently, in their cases, it seems that the dairy prevents the intestinal villi from completely healing, even when off gluten, but once the villi have healed, then they are able to tolerate the dairy products. (It does NOT work that way for gluten, unfortunately!)

Others have to avoid dairy forever.

I agree with Riceguy's recommendations: avoid nightshade plants, and take magnesium and sublingual B12.

If that doesn't work, you might want to investigate Lyme Disease, which causes many (maybe even all) of the symptoms of MS and lupus,, and the primary first symptom is severe joint pain. A surprisingly large number of members here have been diagnosed with it. Contrary to popular opinion, fewer than half of those diagnosed ever had a "bull's-eye rash" and many never recalled being bitten by a tick.

[KristaleeJane]

Many celiacs with the joint-muscle pain find that they need to eliminate dairy--ALL dairy, not just lactose--as well as gluten.

Some of these people are able to successfully add dairy back into their diets later. Apparently, in their cases, it seems that the dairy prevents the intestinal villi from completely healing, even when off gluten, but once the villi have healed, then they are able to tolerate the dairy products. (It does NOT work that way for gluten, unfortunately!)

Others have to avoid dairy forever.

I agree with Riceguy's recommendations: avoid nightshade plants, and take magnesium and sublingual B12.

If that doesn't work, you might want to investigate Lyme Disease, which causes many (maybe even all) of the symptoms of MS and lupus,, and the primary first symptom is severe joint pain. A surprisingly large number of members here have been diagnosed with it. Contrary to popular opinion, fewer than half of those diagnosed ever had a "bull's-eye rash" and many never recalled being bitten by a tick.

I have also been in severe pain which has only gotten worse over the past 5 yrs. I am 30 yrs old and have had bone, muscle and joint pain since the age of 19. I have had the following dx: At age 21-loss of cervical lordosis and muscle spasms (by an xray) Continued on through life with the pain until I was 28, I recieved another xray and that dx: Degenerative Disk Disease, cervical Spondylosis, with bone spurs.

My doc says that there isn't anything you can do about this condition except take the drugs, do physio and stuff like that. She said they would moniter the condition to make sure it doesn't get worse. They seem to not take me seriously because of my age. I also mentioned osteoperosis, and being that I am in Canada, she said the bone density scan would not be covered for my age group.(that is sooooooo stupid.) I am also 6 mths pregnant now and the pain has gotten worse, due to the pregnanacy, its my first, so I am just taking it day by day. The only thing I can take is tylenol and I have heat on it every day. Its really hard. Once the baby comes I plan on pursuing this further to see if there is anything else that can be done.

My question to you is what tests have you had done? Have you had an Xray, MRI or a catscan? I hope you have, if not it may be benifical..

Good luck

Krista

[Kathy59]

Just a thought....your pain maybe nerve pain; if it is the narcotics will not be as beneficial as medications taken for nerve pain..such as lyrica, cymbalta, and baclofen (if you also have spasms). B12 and Magnesium..I just started the Magnesium..

When I first went to Dr..I was given narcotics and muscle relaxers; no relief from pain; and I was drugged..hated it! Staff at GP office started treating me like I was a drug seeker..spoke to my GP about that; he took care of that problem.

My friend is actually who recognized my pain as nerve pain..that is when the Dr gave me other medication..Neuro changed it to Lyrica and gave me the baclofen..still have it in my feet terribly..that's way I have added the magnesium; realized I wasn't taking enough of it also..so increasing as of today.

[imouse1]

My doctor told me to stay away from inflammatory foods now that I'm gluten-free. Bananas and potatoes were the first things she crossed off my list T.T

I don't know if you take any meds for hypothyroidism or anything, but some meds block the uptake of calcium and that could be contributing to your problem. You may also want to see a chiropractor and/or an accupuncturist. If you get a good one, s/he could help alleviate some of your symptoms. I go to a chiropractor to get my alignment done and it takes away alot of the pain for me. He also told me to use cold compresses for up to ten minutes at a time to control the swelling. (While hot compresses do feel better immediately, the cold ones help restrict the blood flow to the area, thus helping control the swelling as opposed to the pain.)

Make sure, though, that the meds you do take aren't just numbing you out. If you're anything like the women in my family, you tend to do alot of work when you're not hurting which spins you through the whole pain cycle again. (We have a family history of fibromyalsia.) Also be careful that the meds they give you to help regulate the pain don't have any side-effects that could be worse. My mom was on Lyrica and it made her gain 40lbs in a year. Cymbalta can't be missed, either; she had really, REALLY bad withdrawal symptoms from those. Remember also that anything that messes with your serotonin is your doctor's attempt at upping the hormone and it's meant to function as a regulatory hormone in the brain--to bring balance. Simply upping the amount may not do the trick.

[STParker]

I too have struggled with leg and ankle pain. Don't know the whole answer yet. I recently changed from vitamin tablets to liquid. For some reason, no matter how wheat/gluten free you are there are still many defiecencies in the body. Mine seem to rotate. First my B's are low then my E is low etc.. I saw an ad for CARLSON vitamin D drops and bought them. After one week on them (quit taking the vitamin D gels) I had 90% reduction in muscle pain and severe charlie horses. I too am frustrated. Every time I go to the Dr.'s I end up with a lot of tests that do nothing but tax my pocketbook. The only tests that really help are the blood lab tests that look for vitamin mineral defiencies! Also My scope revealed that I follow the diet and every thing looked fantastic, but my blood ttgs said Im still being exposed to wheat. It turns out I am absorbing wheat when I cook or prepare wheat flour products for my non celiac family memebers. Hang in there, lots of good advice and remember doctors are only "practicing medicine" they don't have all the answers and sometimes none of them!

[weishy]

My doctor told me to stay away from inflammatory foods now that I'm gluten-free. Bananas and potatoes were the first things she crossed off my list T.T

I don't know if you take any meds for hypothyroidism or anything, but some meds block the uptake of calcium and that could be contributing to your problem. You may also want to see a chiropractor and/or an accupuncturist. If you get a good one, s/he could help alleviate some of your symptoms. I go to a chiropractor to get my alignment done and it takes away alot of the pain for me. He also told me to use cold compresses for up to ten minutes at a time to control the swelling. (While hot compresses do feel better immediately, the cold ones help restrict the blood flow to the area, thus helping control the swelling as opposed to the pain.)

Make sure, though, that the meds you do take aren't just numbing you out. If you're anything like the women in my family, you tend to do alot of work when you're not hurting which spins you through the whole pain cycle again. (We have a family history of fibromyalsia.) Also be careful that the meds they give you to help regulate the pain don't have any side-effects that could be worse. My mom was on Lyrica and it made her gain 40lbs in a year. Cymbalta can't be missed, either; she had really, REALLY bad withdrawal symptoms from those. Remember also that anything that messes with your serotonin is your doctor's attempt at upping the hormone and it's meant to function as a regulatory hormone in the brain--to bring balance. Simply upping the amount may not do the trick.

you might want to check to see if you're a 'hypersensitive celiac.' i talked to my celiac specialist about my son who is in kindergarten. the first two weeks of school he had severe pain stomach pain, dh and loss of appetite because he refused to wash his hands (after touching objects in the school that other gluttoned kids had handled) and then eating his snack. he's doesn't eat other kids food and they only have a snack to eat because he's on a half day schedule. prior to starting school he had no pain for about the half a year that he started his gluten free diet. our specialist said he was 'hypersensitive' to gluten. we worked with the school and now my son is doing much better and washing his hands.

apparently over time he become so sensitive to gluten i have him change all of his school clothes, particularly his pants (in case if he sat in some gluteninous proteins on the chairs) when he comes home so he doesn't contaminate the home. he also has to wash his hands with soap everytime he goes out and comes back into the home. any objects like books or toys that were handled on the 'outside' and brought into the house have to be washed and cleaned or wiped well.

i guess it's the idea that gluten is a sticky protein. in a twisted way it does make sense. it's like going to chucky cheese.....all those games and tables would be covered with gluten from kids eating their pizzas.

my other son has the same hypersensitivity problem but his symptoms are knee joint pains. when he washes his hands well his knee pains go away.

good luck.