Joint/muscle

[master44]

I am a 32 year old male was diagnosed with Celiac via the antibody and endoscopy test and have followed a strick gluten free diet. I find that if I eat something on accident with gluten I get really bloated.

The problem I have been having for the last year is joint and muscle aches, generally centered from the elbow to wrist and knees to ankles. The muscle issue is not an ache that I can really pinpoint, nor can I touch the area and make it feel any worse.. The best way I can describe it is if you gripped your hand tight and held it for 30 seconds and then release it, but it still feels like you are holding on to something. The joint piece feels like I need a really good stretch, but no matter how much I stretch I still feel it.

I have been to all kinds of doctors and everything has been ruled out with arthritis, inflamation, RA, lupus and many others... In the process of getting tested it was found I have osteopenia, probably a result of malabsorption from years with Celiac.

The strange thing is the symptoms come and go, usualy on for 2 weeks, then gone for 1, I also found that accupuncture generally lessens the symptoms, but doesn't get rid of them.

Last doctor I saw recommended I do a diet restricting gluten, dairy, legums, corn, eggs and soy

I really don't know what I would eat if I went off all of the items and have already dropped 45pounds since starting the gluten diet and don't feel it would be healthy to loose more. In addition I have genetic high cholesterol so am already not eating any fatty foods.

Has anyone had vague joint/muscle issues as a result of a food intolerance or theese problems after starting gluten free?

[trents]

The only thing that comes to mind is some kind of nerological damage from the Celiac disease. It is well-known that malabsorption of B vitamins sometimes results in nerve damage with celiac disease.

[aikiducky]

Vitamin deficiencies came to my mind as well.

Some people do react with joint/muscle pain to foods that they are intolerant of, so I don't think your doctor is wrong to suggest trying to cut out other foods. But you need to plan that well if you want to try, exactly for the reasons you mention.

Pauliina

[RiceGuy]

Many have found magnesium and vitamin B12 to be very helpful. Personally, they worked wonders for me - resolved all aches and pains, stiffness, etc. A decent B-complex would probably be beneficial as well. Another might be zinc. For the B12, a sublingual methylcobalamin form would be my recommendation. There is no known level of overdose for B12, so take all you want. Though according to research, the human body doesn't effectively absorb more than about 5-6mg per day.

[darlindeb25]

Yeah Master, it sounds like neuropathy to me. Symptoms with neuropathy can come and go. I have small fiber neuropathy in my legs and feet, plus my arms and hands. I can understand this "gripping" feeling you mention. Mine is not usually in the joints though. I get this feeling about 5 inches above my ankles, and it feels like someone is holding onto my legs and will not let go. I also have what I call, "cell phone vibrations" on the bottom of my feet, pins and needles at times, numbness, etc.

Have your B12 level tested before you start taking B12, it's a simple blood test for us. Anything under 1000 generally is not enough for a celiac/gluten intolerant. My level is now at 1037, and I have been taking B12 for almost 4 yrs. I started out taking 1000mcgs of sublingual methycobalamin B12, now I take 3000mcg.

Good luck.

[mftnchn]

I'd suggest that you check out the lyme disease thread on this forum, as you didn't mention that being ruled out.

Certainly it could be a food intolerance and I'd guess a careful elimination diet could help with that.

I agree about the deficiencies. I had low levels of many things, plus didn't absorb things well when I supplemented. Vitamin D is another one to be sure to check.

The SCD diet is being used with a lot of autistic kids--who certainly have the neurological thing going on. So you could see if you are not handling carbs well due to the villi damage. I had a gut panel done through Rosmed, but others might be able to do it. It showed that I had high levels of fecal sugar--evidence I can't break down carbs at least in the final stages.

Other sources of pain like that could be metal toxicity, mold toxins. Maybe infections.

Hope you get some help soon.

[dizzygrinch]

Hello, Im not trying to hi jack this thread, just wanted to jump in here, I have been diagnosed as vitamin d deficient for almost 2 years now, as a matter of fact, my endo. said its almost non existant, but, guess what, never did anything about it. They never tested for anything else, except maybe iron, and I believe that is ok. Just thought that was interesting...

[Nancym]

I've Open Original Shared Link that seems to be caused by low D3 levels. Are you supplementing D3 at all?

Last doctor I saw recommended I do a diet restricting gluten, dairy, legums, corn, eggs and soy

I really don't know what I would eat if I went off all of the items and have already dropped 45pounds since starting the gluten diet and don't feel it would be healthy to loose more. In addition I have genetic high cholesterol so am already not eating any fatty foods.

You might want to look into a book called "The Paleo Diet", it's very similar to this. Should give you ideas on what to eat. If you're into cooking there's a really nice cookbook called "The Garden of Eating" that confirms fairly closely to this particular diet.

[ECD]

I am a 32 year old male was diagnosed with Celiac via the antibody and endoscopy test and have followed a strick gluten free diet. I find that if I eat something on accident with gluten I get really bloated.

The problem I have been having for the last year is joint and muscle aches, generally centered from the elbow to wrist and knees to ankles. The muscle issue is not an ache that I can really pinpoint, nor can I touch the area and make it feel any worse.. The best way I can describe it is if you gripped your hand tight and held it for 30 seconds and then release it, but it still feels like you are holding on to something. The joint piece feels like I need a really good stretch, but no matter how much I stretch I still feel it.

I have been to all kinds of doctors and everything has been ruled out with arthritis, inflamation, RA, lupus and many others... In the process of getting tested it was found I have osteopenia, probably a result of malabsorption from years with Celiac.

The strange thing is the symptoms come and go, usualy on for 2 weeks, then gone for 1, I also found that accupuncture generally lessens the symptoms, but doesn't get rid of them.

Last doctor I saw recommended I do a diet restricting gluten, dairy, legums, corn, eggs and soy

I really don't know what I would eat if I went off all of the items and have already dropped 45pounds since starting the gluten diet and don't feel it would be healthy to loose more. In addition I have genetic high cholesterol so am already not eating any fatty foods.

Has anyone had vague joint/muscle issues as a result of a food intolerance or theese problems after starting gluten free?

I don't have a confirmed celiac disease/gluten whatever diagnosis yet (apart from feeling better when not eating gluten), but joint pain was the first and worst symptom i ever had. for me, my elbow-area was the most effected, on the right side more than my left. overall, both wrists, both elbows, middle to pinky fingers of right hand, and knees would hurt for no reason. it was typically one or two joints at a time, but they might hurt anywhere from 5 minutes to hours and hours. my pain did the exact same thing as yours, it sort of went through flares where it would be dreadful (almost constant) for a week or two, then i would have nothing for a while, then three weeks, etc. because of this, my doctor suspected lupus for a while. i was also checked for arthritis, schleroderma (?), etc. all came back negative. eventually the doctor just said it was a symptom of having raynaud's (a finger, circulation thing) and wrote me a prescription for procardia xl - a ridiculously strong blood pressure medicine. that did nothing but make me dizzy. another doctor said it was growing pains. yeah right, growing pains that lasted from age 17 until 23? i haven't grown in years and 7 years of growing pains should make me taller than 5' 4". does that sound like what you have? i write it off as a symptom of gluten issues. i can't rightly say if being gluten free has affected it yet, as i haven't been gluten free long enough, and to be quite frank, after so many years of joint pain i don't notice it as much. if i had to bet, i'd say it's lessened over the last year or so... in any case i've stopped mentioning it to doctors i hope you feel better!

[mftnchn]

Hello, Im not trying to hi jack this thread, just wanted to jump in here, I have been diagnosed as vitamin d deficient for almost 2 years now, as a matter of fact, my endo. said its almost non existant, but, guess what, never did anything about it. They never tested for anything else, except maybe iron, and I believe that is ok. Just thought that was interesting...

I'd push for him doing something...its important.

[mftnchn]

Your pain sounds a lot like what turned out to be lyme disease for me. It is for me most typically in the extremities or upper back. I had an incident that is exactly like Raynauds but that wasn't typical either. The pain can travel around, like one joint be extremely painful for an hour and it be totally gone in 3-4 hours and another areas start hurting.

Pain that travels around like that, switches sites, is extremely typical for lyme and it is the reason my doctor suspected it. Lab tests were positive, and then treatment response was positive which finally confirmed the diagnosis.

I still get some of it but it is MAJORLY better after antibiotic treatment. But it took 8 months of antibiotics before I started to get better. Most docs are very ignorant about lyme disease and treatment. Complicated by the fact that the agency that was looked to for setting standards has been found corrupt and the group is being totally reformed and new standards set. That will take time; meanwhile you have to find a LLMD (lyme literate MD) to have any hope of diagnosis and treatment.

Vitamin D is important for patients with CFS and FM, I've found by reading the sites.

[fedora]

have you been to a physical therapist?

I went to one finally and am so mad at myself for not going years ago.

I have tried eliminating different foods, massage, chiropractor(which helped for awhile but then things would get bad again), and supplements.

good luck

[Kurzemiete]

Your pain sounds a lot like what turned out to be lyme disease for me. It is for me most typically in the extremities or upper back. I had an incident that is exactly like Raynauds but that wasn't typical either. The pain can travel around, like one joint be extremely painful for an hour and it be totally gone in 3-4 hours and another areas start hurting.

Pain that travels around like that, switches sites, is extremely typical for lyme and it is the reason my doctor suspected it. Lab tests were positive, and then treatment response was positive which finally confirmed the diagnosis.

I still get some of it but it is MAJORLY better after antibiotic treatment. But it took 8 months of antibiotics before I started to get better. Most docs are very ignorant about lyme disease and treatment. Complicated by the fact that the agency that was looked to for setting standards has been found corrupt and the group is being totally reformed and new standards set. That will take time; meanwhile you have to find a LLMD (lyme literate MD) to have any hope of diagnosis and treatment.

Vitamin D is important for patients with CFS and FM, I've found by reading the sites.

Hello mftnchn: Your mention of lyme disease complelled me to write to you. This is my first post on this forum and I have much to say (but I will save that for more appropriate thread). In short, I am 37 and just received news that i am reactive and intermediate for lyme disease (via the blood test), in addition to being reactive and intermediate for CMV (cytomegalovirus) and moderate blood in urine. I have other conditions some from childhood I will list in order of progression : headaches, moodiness (depression , anxiety) body aches, tinnitus, post partum depression, panic attacks, night terrors,tingling in hands and feet, brain fog (loss of short term memory) fibromyalgia, and more recently i have noticed thinning of hair, recently tested sensitive to buckwheat and soya bean. To say I am overwhelmed is an understatement...

My question to you is what antibiotics have been helpful to you, also if you don't mind please tell me your celiac symptoms..I was negative for the celiac blood test however i have so many symptoms i think it is imperative for myself and my child i do the enerolab test to ascertain if in fact i do have celiac.

Any answers are better than questions!

Thank you for your time!

[mslee]

My symptoms have been muscle and joint pain, fatigue, weakness, dizzines, irritabilty, anxiety, depression, tingling, numbness in arms and hands, migraine headaches...These could be from malnurtion from the celiac...(some on this board have suggested B 12 and Magnesium, and that makes since.)

The symptoms that have gone away on a gluten free diet are: nausea, vomiting, bloating & the dreaded "D"..these come back if I accedentally eat gluten, dairy, or soy.

Possibly after I heal most symptoms will go away.

Although I have been Dx with Lupus & Fibromyalgia, possible one or both were misdx but am finding I have to be very persistant and a little pushy with doctors to get anywhere.

For Lyme disese is that something they can find in your blood if it was something you had years ago? Does it cause problems for life?

Working on getting all these blood tests ordered.

[mslee]

"Last doctor I saw recommended I do a diet restricting gluten, dairy, legums, corn, eggs and soy

I really don't know what I would eat if I went off all of the items and have already dropped 45pounds since starting the gluten diet and don't feel it would be healthy to loose more. In addition I have genetic high cholesterol so am already not eating any fatty foods.

Has anyone had vague joint/muscle issues as a result of a food intolerance or theese problems after starting gluten free?"