Gluten Free Withdrawal -- Bone Pain, Muscle Pain?

[Maybe Celiac]

Hi

I'm brand new to this community. I'm not sure I have a gluten intolerance. Although I recently started an allergy elimination diet....5 days ago. It's tough but I'm doing okay at it. After 18+ months of visiting doctors and having several test, I went to see a hollistic doctor who recommended this diet.

I have had numerous symptoms over the 18+ months from numbness and tingling in the extremities and bone and joint pain. These are the most common symptoms I have (there are others). They come and go and vary in intensity. I have had almost every test imaginable and nothing comes up. My doctor recently told me to try to forget about my symptoms for three months and see what happens. I have been to every specialist in the medical community imaginable (except for endocronologist which some folks have recommended but my doc does not see a need for "why because you have joint pain?" is her answer).

Back to the original intent of my message....For the last three nights I have woken up to shooting leg pain from the hips right down to the feet. Also muscle pain in the legs. The pain has not been this bad before and I"m wondering if it's because of the diet. I have eliminated basically everything except things fruit veggies and protein (chicken, fish, beef, pork). No gluten, dairy, caffeine, coffee, sugar....

I'm really looking to get to the root of my symptoms, but I seem to be on a very long journey. Have I surpassed the word limit? ha ha...sorry to go on and on... I need some advice though.

Thank you in advance!

[jennyj]

I have no good advice but I hope you can find out what's wrong and start feeling better soon. I have been having some leg pain the last few days too. I have just taken tylenol and out a warm corn bag on it. Good luck and take care.

[JennyC]

I hope that you find the answers to your health problems. You may want to consider taking a calcium supplement. Both bone and muscle, as well as nervous tissue, require a great deal of calcium. If you do have celiac disease it is likely that you have not been absorbing adequate calcium. When I was pregnant and having similar pains my doctor told me to also take magnesium, so you may want to try that as well.

I hope you feel better.

[Maybe Celiac]

Thanks for the responses. I appreciate them. I feel like I have been dealing with these issues for so long, but the intensity in the last few days is reaching unbearable. I'm afriad it's starting to effect my mood and mental well being. I was hoping someone else experienced some similar withdrawals.

[Acersma]

I too get the muscle and joint pain along tingling, RLS, and many other symptoms. I find stress, lack of sleep, and alcohol can all intensify the pain. I have also noticed when I cut back on my caffeine that this pain started. I couldn't do cold turkey so cut back more gradually. It hurts and I can sympathize w/ you. Hope you start seeing some improvement soon.

Jody

[Worriedwife]

The pain actually sounds like it might be sciatica (not sure if I spelled that right). The main nerve running down your leg passes through a small hole in your hip. If it gets agrivated, the pain shoots right down the leg, and be very painful.

My husband has muscle and joint pain, and has been diagnosed with Celiac. From time to time over the years, his sciatica has acted up. He basically takes ibuprofin and rests it. Ice packs might help to reduce the swelling of the nerve in the hip area.

I would ask your primary care physician about this possibility, and if they can suggest any specific relief.

[Maybe Celiac]

Thanks. It's nice to know you are not the only one. I have the pain in both legs. I wonder if your husband ever expierenced that. Also it has happened mostly at night.

I've been trying to figure out these symptoms for a while now. I'm really hoping it is a food allergy/sensitivity. Again, I appreciate your response, it helps!

[Worriedwife]

He has had pain in both legs, but it is not limited to just at night. It sounds like maybe your bed is aggravating your problem. We changed to one of the "sleep number" beds about 10 years ago, and it really helps with his pains. I know it's a big (expensive) change, but it was very much worth it for us.

Have any of your doctors diagnosed you with fibromialgia? This is a diagnosis of elimination. When everything else comes up negative, that's what they fall back on. My husband was diagnosed with this several years ago, and has just recently been diagnosed with Celiac.

Have you had an MRI done on your lower back? You may have injured a disc, which is aggravating the nerve. You might also want to try going to a chiropractor or a pain specialist. I know a lot of people want to make changes naturally, but extreme pain requires medication, and a pain specialist will treat this symptom.

I went back and re-read your original e-mail. We both suggest you get rid of your doctor. Telling you to try ignoring your symptoms is bordering on criminal. Find a different doctor!!!

[GFepicurean]

You may be experiencing nutrient and mineral deficiency. While eliminating foods is key, you must also consider what you are choosing to eat. Until you have been advised further by a medical doctor, the following may be useful

Eat foods rich in vitamin D (e.g. eggs, salmon, sardines, cod, milk -- though not if you are dairy free), this will allow you to absorb calcium and magnesium. Also, be sure you are getting your B vitamins (e.g., B-12 meats & eggs & the other B

[Maybe Celiac]

Yes, I think back to my doc saying 'don't do anything for 3 months and see what happens' and I get so angry. She's not the one living this. A rhuematologist I saw twice said no I don't have fibromaylgia or any inflammatory problem. Someone else suggested a new mattress as well. I think I should pursue it. Also, the pain did not happen last night wahoo! just some minor joint pain which I can deal with. Thanks again. your message helps.

[mamabear]

You might ask your doctor to check your iron and ferritin(blood iron stores) levels, as this has been implicated in Restless Leg Syndrome as well as celiac disease. A caveat is if celiac or other nonabsorbing condition is NOT present, and you are iron deficient, a thorough workup for blood loss must be done.

[Maybe Celiac]

I was anemic in Dec 05. Took iron supplements. Then okay. Ferritin was low in March Still low. Doc says take supplements again. I don't know why though. sometimes it feels like restless leg, but most of the time it is just pain. thanks for your message.

You might ask your doctor to check your iron and ferritin(blood iron stores) levels, as this has been implicated in Restless Leg Syndrome as well as celiac disease. A caveat is if celiac or other nonabsorbing condition is NOT present, and you are iron deficient, a thorough workup for blood loss must be done.

[mftnchn]

Hello, and welcome to this board.

Your pain description sounds almost exactly like mine. It is from lyme disease. Have you had that tested? There are others on this board with both lyme and celiac or gluten intolerance. They will tell you that the only lab to have the test is Igenix. Many doctors are not aware of lyme and how to treat. Or they have a "box" about lyme and if you don't fit in "you don't have it."

My pain is muscle and joint and nerve. It comes and goes in different places. It is usually worse at night, and I also deal with morning stiffness. I had this kind of pain for many years and it gradually worsened before finally I went to see a doctor who understands lyme, and he picked up on it. It took about 8 months on antibiotics before I began to improve, and then another year or two before I was really good. It took 6 years before I could wean back off of antibiotics without getting symptoms again. I was off everything as of last February and did well until after I went gluten free in May.

We only have guesses why this has happened: coincidence (lyme is notorious for recurrence), healing from celiac awaking my immune system to discover more lyme, combo of problems of heavy metals, poor elimination from celiac, lyme, candida, etc.

My sense is that the pain is not from celiac and not from food allergies, but I think both of these can cause pain.

I hope you find the answers you need! My journey has been a very long one and hope yours isn't!!!

[Karen B.]

Before I was diagnosed, I went to ER because my lower back hurt so badly. They diagnosed sciaticia and severe anemia. They suspected colon cancer and instead it was Celiac. (Celiac was great news!!!) After the Celiac diagnosis, they said they thought the sciaticia was brought on by a severe B vitamin and folic acid deficiency that kept my nerves from repairing themselves.

Taking sublingual B-12 and folic acid drops helped speed the healing and it hasn't been much of a problem since I went gluten-free. I take B-12 Blast (by Bricker Labs) that I get from Whole Foods and I continue the sublingual drops because I know that gets into my system no matter what.

ER referred me to an orthopedist and the ortho doc made the sciaticia diagnosis. Apparently, classic sciaticia is shooting pains from the lower back and down the leg. It seemed to be worse when I laid flat of my back but it got so bad that I couldn't sit, lay or stand in the same position more than 30 minutes.

If this sounds like what you are experiencing, a rolled bath towel in the small of my back and under my knees helped me. And you may want to take fish oil and flax seed oil supplements to provide some additional healthy fats for healing. Fish oil also helps my arthritis.

[barbara123]

He has had pain in both legs, but it is not limited to just at night. It sounds like maybe your bed is aggravating your problem. We changed to one of the "sleep number" beds about 10 years ago, and it really helps with his pains. I know it's a big (expensive) change, but it was very much worth it for us.

Have any of your doctors diagnosed you with fibromialgia? This is a diagnosis of elimination. When everything else comes up negative, that's what they fall back on. My husband was diagnosed with this several years ago, and has just recently been diagnosed with Celiac.

Have you had an MRI done on your lower back? You may have injured a disc, which is aggravating the nerve. You might also want to try going to a chiropractor or a pain specialist. I know a lot of people want to make changes naturally, but extreme pain requires medication, and a pain specialist will treat this symptom.

I went back and re-read your original e-mail. We both suggest you get rid of your doctor. Telling you to try ignoring your symptoms is bordering on criminal. Find a different doctor!!!

Do you have insurance? If you do is it a HMO? Back when I used to work, before celiac disease I used to work trying to get insurance authorizations for procedures. HMO's are famous for not allowing anything (out of the norm). Sometimes you have to pay them yourselves.. Not right, but a major problem in the US. I agree with everyone else, you need to find a doctor that will work with you and your problems, not someone who will tell you to try to forget. Hope you can get to the bottom of this. Best of luck to you.

[ElenaB]

Hi

I'm brand new to this community. I'm not sure I have a gluten intolerance. Although I recently started an allergy elimination diet....5 days ago. It's tough but I'm doing okay at it. After 18+ months of visiting doctors and having several test, I went to see a hollistic doctor who recommended this diet.

I have had numerous symptoms over the 18+ months from numbness and tingling in the extremities and bone and joint pain. These are the most common symptoms I have (there are others). They come and go and vary in intensity. I have had almost every test imaginable and nothing comes up. My doctor recently told me to try to forget about my symptoms for three months and see what happens. I have been to every specialist in the medical community imaginable (except for endocronologist which some folks have recommended but my doc does not see a need for "why because you have joint pain?" is her answer).

Back to the original intent of my message....For the last three nights I have woken up to shooting leg pain from the hips right down to the feet. Also muscle pain in the legs. The pain has not been this bad before and I"m wondering if it's because of the diet. I have eliminated basically everything except things fruit veggies and protein (chicken, fish, beef, pork). No gluten, dairy, caffeine, coffee, sugar....

I'm really looking to get to the root of my symptoms, but I seem to be on a very long journey. Have I surpassed the word limit? ha ha...sorry to go on and on... I need some advice though.

Thank you in advance!

[MaryAnne729]

I had severe leg/joint(hips and knees) pain that was so bad it woke me up at night crying!!(among other symptoms like exhaustion, intermitent N&D) I also had very low iron saturation levels. My hematologist tested me for celiac saying, it's probably not what's wrong, but I'll test you anyway just to be sure. Well, sure enough I was called a week or so later telling me to stop all gluten. After about a month all my leg/joint decreased and after about 3 months it was completely gone!! (however I was also put on Iron supplements three times/day and my iron level is now normal) I'm not sure if it's the gluten free diet, or the increased iron, I think it's the gluten free diet as a month after I started gluten-free my iron was still not normal on repeat blood test.

I don't know if this helps, but after only 5 days, it's hard to say....but good luck and if you do have celiac it's something I have got "use to" if that's how to look at it. I don't miss how bad I felt, so it's all worth not having all the things I thought I couldn't live without!!

[kvandorselaer]

Hi! The only information I have on ur pain is that I have the same kind of pain and I have the early onset of osteoporosis (i'm only 26). It is from my celiac, I wasn't diagnosed until 5 yrs ago. Do you work out? I know that lifting weights will strengthen your muscles and aleviate some of the pain. WHen I ache, I take Advil and take a hot bath/hot tub. It may help. Have you had a bone density scan?

Feel better!!

Kristin

[meg44]

I won't bore you with my history of symptoms and the number of doctors I have seen. I will just say this. Green juicing saved my life. I got a GOOD juicer and every day (at first twice a day), I made kale, spinach, parsley, & collard juice with celery, cucumber or apple (or sometimes the juice of a lemon) thrown in. I used mostly greens and believe me it takes a ton of them to make a glass of juice. It absolutely saved my life. If there one ONE thing I've learned in the 40 years I've been looking into health problems.....ONE thing I would recommend to people it is GREEN JUICE, made fresh (less than 10 minutes old, so enzymes are alive).

I wish you the best.

[Anomale]

I have been gluten free for a week now and all of a sudden I am experiencing major muscle pain and bone pain. ALL OVER! I hope this helps someone else if they google this weird symptom. I am trying to hold it togehter but it hurts really bad.

[Mordikar]

My doctor recently told me to try to forget about my symptoms for three months and see what happens. I have been to every specialist in the medical community imaginable (except for endocronologist which some folks have recommended but my doc does not see a need for "why because you have joint pain?" is her answer).

Response: "No because you can't come up with anything better than 'try to ignore the excruciating pain you're in'.... Since you can't diagnose me why don't you go ahead and get me the referral for an endocrinologist I asked for...."

Doctors are seriously getting on my nerves lately. My recent GI visit went like this:

Me: "I know i may have celiac, but while we are waiting on the blood test results why don't we get sonograms of my right abdomen to check for issues with my gallbladder, liver, pancreas and kidneys, and anything else in this area?"

DR: "I don't like removing gallbladders or any organ for that matter, you've already had your appendix out. I see patients with this pain all the time they find a surgeon to remove their gallbladder and keep having these pains. And I refuse to see them again."

ME: "One, I didn't ask to have my gallbladder removed I asked for sonograms to look and see if there are any issues there. Two, If my gallbladder IS an issue I intend to do what ever is necessary to stop this pain. Maybe it can be handled by a diet change of some sort... Three, You are replaceable... There are eight other gastroenterologists in this office and I have 4 references for other GI's from people I work with. I'd like to continue working with you since we've started, but if we're going to have issues, you can make copies of my entire record including the videos from the endoscopy and colonoscopy, and I can take my money and insurance to some one who actually wants to cure me."

My sonograms were Thursday, I'm waiting the results... It's sad but sometimes you have to be abrupt with them to take a notch out of the god complex.

Wishing you the best of luck with diagnosis and treatment. I've only been dealing with my pain for 3 or 4 months.

~Justin