Celiac And Joint/bone Inflamation

[Greg Rappaport]

I replied to another thread of yours about fingers . . . then jumped to this one not knowing it was yours at first, but the joint/bone inflammation title got my attention. I have a child that has two hospitalizations to date due to idiopathic joint inflammation (following a stupid "adventure" with processed "gluten free" foods . . .sigh). We are a super sensitive family with family history all over the place of deteriorating joints, neurological function and bone density. Our "conventional" doctors have only been able to say that they don't know what is going on, but they agree *something* is up.

We have spent the last year working closely with a gluten intolerant savvy naturopathic doctor (ND) - we have been very pleased with Dr. Preeti at HealthNOW, and we work with her from very long distance. We are making great strides, and each of the family members that was seen has a different protocol prescribed for addressing our individual needs. Each of us has had different issues impacting our healing and wellness, although we all have to maintain a super gluten free diet that is along the lines of the Super Sensitive group. I wish you well in figuring this out for yourself. I understand how frustrating it can be. We continue to work with our conventional doctors local to us (this includes some of the best doctors in the states that we have access to), but they have advocated strongly that we need to continue our care with our ND. They also rely on our ND to address issues that they recognize but don't know how to properly fix!

Good luck!

I read both of your replies. Thanks for taking the time to respond. I don't know what to say... Your issues make me seem like a complaining pest! I can totally appreciate you issue and concern for your children. I too have children. Three, two girls (6 and 4) and a 2 y.o. son. Neither girl has any allergies or gluten intolerance (at least for now), but my son has dairy, egg, peanut and soy allergies. He also suffers from eczema.

I am glad I joined Celiac.com, and have people to talk to about my symptoms. And I truly want to resolve my symptoms as they sometime seem to be draining my entire existence (more of a personal problem). Over the last two days my joint-pain has worsened, causing more frustration. The most frustrating part for me is knowing I'm pretty successful in my job (recently promoted) and am currently in graduate school with high aspirations. The irony is I can hardly walk right now, much less play with my kids!

Thanks for sharing, and best wishes to you and your family. -Greg

[rosetapper23]

Ummm....why would your cousin want you to stop taking BioSil? It's simply silicon. Does he not understand what silicon is?

Sorry...I have to admit that I don't have much respect for doctors. **sigh** I was so hoping to hear that you were feeling better after taking the zinc, manganese, and silicon.

[mushroom]

I have been following your thread, Greg, and did not want to interject my perhaps negative note, but will share my store with you. My first clue that something was wrong (after some aching in my wrist) was pain in my toe joints and right where the toes connect to the foot bones. This then progressed to my finger joints. I went to a rheumatologist and the only tests that were positive were the inflammatory ones - ESR and CRP. I was negative on rheumatoid factor. The pain became progressively worse and I was placed on rheumatoid medications which did help with the pain. I had no concept at this time that my digestive distress (which had always been dissed dismissed by my doctors was related to gluten and I was never tested for celiac. I decided to go gluten free on my own because I knew someone who treated his ankylosing spondylitis (another disease in the rheumatoid family) with gluten free eating. Unfortunately (boo,hiss) I am not one of those for whom gluten (and many other things) free resolves this particular problem. About three years after my initial pain symptoms I developed psoriasis, and my diagnosis over the years has varied but now settled as psoriatic arthritis (shared with Phil Mikelson). It flares and wanes periodically. The treatment (and it is not without its very negative side effects) has prevented joint disintegration and I am pain-free and not crippled in any way. I just thought I would share my story as my journey down this road started out with pain in my toes and then my fingers.

[txplowgirl]

Hi Greg, I also have something for you. Those of us who have arthritis issues tend to have a problem with nightshade vegetables. (tomatoes, potatoes, all bell peppers and eggplant). This is due to the low levels of toxins in them. Thecause pain/swelling in the joints and muscles. Soy and dairy will cause some of these issues too.

Hope you get to feeling better, and a change of subject. I love your goat!

[Greg Rappaport]

Hi Greg, I also have something for you. Those of us who have arthritis issues tend to have a problem with nightshade vegetables. (tomatoes, potatoes, all bell peppers and eggplant). This is due to the low levels of toxins in them. Thecause pain/swelling in the joints and muscles. Soy and dairy will cause some of these issues too.

Hope you get to feeling better, and a change of subject. I love your goat!

You are the second person to mention nightshade foods. I had never heard of this before, and another member mentioned them under another post of mine. I'll discuss this with my doctors to see if there anything.

I don't feel terrible, just really getting frustrated that I cannot seem to shake the inflamation and (periodic) pain in my right foot. Really wierd, and have never had anything like this before. I'm only 41, and feel like I should be a pretty healthy person. I don't smoke, do drugs or even alcohol, and try to eat pretty much whole, healthy foods. I'm guessing that I have either been eating something which I didn't know had some gluten in it, and it has caused this problem; or there is something else going on and is just taking time to materialize as a diagnosis.

I spent some time looking at the information on Sjrogens Syndrome, and a lot of my symptoms appear to coorelate, but clearly this appears to take time to accruately diagnosis. I'm going to have my rheumatologist order the recommended bloodwork, and will also ask my opthalmologist to do the two eye-tests (for dryness). I'm not really having any dental problems at this time or issues with saliva, so I'm going to leave this for now.

I just want answers so I can move on with my life. I have walking issues, and this problem is really inhibiting me (currently) from living life as I am accostomed.

Alright, enough rambling... Thanks for your comments.

[Greg Rappaport]

I just thought I would share my story as my journey down this road started out with pain in my toes and then my fingers.

Thanks for sharing your story. Reassuring to know that I'm not the only one with "mysterious" symptoms that none of my doctors can seem to get to the bottom of. Praying that things work out soon, and wish you the best as well.

[love2travel]

Greg, I empathize with your pain. You and I are nearly the same age and my pain is debilitating on a daily basis. However, much of my pain stems from an accident I had 3 1/2 years ago from which I have not recovered (herniated discs, degenerative disc disease, myofascial pain, rotator cuff injuries) as well as fibromyalgia and Rhematoid Arthritis. To this day I must lie down to watch TV, lie on the floor when we have company over so I can visit, stand to eat (walk around lots in restaurants), lie down in vehicles (I can drive half an hour MAX), stand up in the back at church...it really takes its toll. I have seen many surgeons, have spent about $40,000 on massage, acupuncture, laser, chiro, cortisone injections, painkillers to no avail. Since being strictly gluten-free for nearly six months none of this has improved but I am hoping to see improvement as I have been told and read it can take up to two years for full healing. (My celiac panel last week shows that I am doing extremely well gluten free - my number is 3.8 and below 7.0 is considered "negative" whereas my number initially was 71!).

I do take Magnesium glycinate (the easiest absorbing form) 900 mg per day, 5,000 iu D3, B12 sublingual, zinc, B complex, microbiotics, Calcium and malic acid. So far the only relief I feel is in my calves at night. I am thinking that I may need to cut out nightshades as well.

Thankfully there is always hope. All the best to you with this. Chronic pain is truly not fun.

[Greg Rappaport]

Ummm....why would your cousin want you to stop taking BioSil? It's simply silicon. Does he not understand what silicon is?

Sorry...I have to admit that I don't have much respect for doctors. **sigh** I was so hoping to hear that you were feeling better after taking the zinc, manganese, and silicon.

My foot is still the same! Just refuses to get any better. In the morning it's good, but as the day progresses (depending on how much I am using it) it worsens. The fact that it only gets worse during weight-bearing activity (walking) tells me that the inflamation is not likely to be the result of anything autoimmune going on in my body. But who knows?! I can't tell you how disappoionted I was upon receiving the results of my MRI - no stress fracture, only mild edema (1st and 2nd metatarsals and bottom of foot). I'm wondering if it is an incredibly microscopic fracture which hasn't been picked up through imaging.

Of course all this does not explain my other symptoms! I have been on Zyflamend, Biosil, chelated multi-minerals (including zinc and magnesium), flaxseed oil, and glucosamine with MSM now for 5 days. Today I am starting to feel less joint-pain and stiffness. Unfortunately, however, my eye soreness/dryness still persists, and I had a mild headach throughout the day today. Fatigue has also been an issue.

Definitely seeing my rheumatologist next week and will arrange for a lyme titer test. We'll see....

On a positive note, my baby son said "mommy" today. Daddy's little boy has his priorities straight.

[Greg Rappaport]

Greg, I empathize with your pain....

Thankfully there is always hope. All the best to you with this. Chronic pain is truly not fun.

Wow. Again I don't know what to say. I don't want to come across as if I'm complaining too much, but really do appreciate getting all this feedback from various people. The engaging conversations alone are quite ameliorating. Most of my doctors give me 10-15 minutes - not even a dollar a minute per copay! I often wonder if they really care.

As much as my own story is debilitating to me on a very personal level and on a daily basis, reading posts like your reminds me just how much I have to be thankful for. Yes, comparatively speaking I am not really in bad shape. It is just that ever-nudging reminder that 5 months ago I was pretty much normal and symptom-free... For me not being able to walk normally is the salt in the wound. And on top of that, I think my kids and family suffer more as a result than I do.

I really do have no idea what it means to be in pain, and to have "serious" debilitating issues. Johann Wolfgang von Goethe said: "Der gute Mensch in seinem dunklen Drange ist sich des rechten Weges wohl bewusst" (A good man in his darkest hour is alwasy aware of the correct path. - loosely translated). Having all of you to share thoughts, stories and daily experiences with is quite comforting, and with a little faith leads me to believe I'm on that "correct path".

Thanks and warmest regards.

[love2travel]

Wow. Again I don't know what to say. I don't want to come across as if I'm complaining too much, but really do appreciate getting all this feedback from various people. The engaging conversations alone are quite ameliorating. Most of my doctors give me 10-15 minutes - not even a dollar a minute per copay! I often wonder if they really care.

As much as my own story is debilitating to me on a very personal level and on a daily basis, reading posts like your reminds me just how much I have to be thankful for. Yes, comparatively speaking I am not really in bad shape. It is just that ever-nudging reminder that 5 months ago I was pretty much normal and symptom-free... For me not being able to walk normally is the salt in the wound. And on top of that, I think my kids and family suffer more as a result than I do.

I really do have no idea what it means to be in pain, and to have "serious" debilitating issues. Johann Wolfgang von Goethe said: "Der gute Mensch in seinem dunklen Drange ist sich des rechten Weges wohl bewusst" (A good man in his darkest hour is alwasy aware of the correct path. - loosely translated). Having all of you to share thoughts, stories and daily experiences with is quite comforting, and with a little faith leads me to believe I'm on that "correct path".

Thanks and warmest regards.

There is complaining and then there is venting and discussing. I do not think you are complaining! I know I was a little because my pain happens to be extra excruciating today (I always lie down to type). Cannot stand to do the dishes - but then that makes me thankful for the dishwasher and at least I have dishes to wash! Many in poverty do not. There is an over abundance of awesome food in the house. Again, more than most. We all have things to be thankful for, in spite of pain. It is amazing to me how one can still have joy and passion when suffering so much.

Goethe was very wise to have said that!

[rosetapper23]

Okay, two other possibilities that I can think of....have you been tested for thyroid issues? Whenever I'm either hypothyroid or hyperthyroid, my joints become inflamed--every little joint in my body hurts, as well as the tendons. I end up with tendinitis in my hands, elbows, and feet. Anyway, this is just a thought, and your doctor can easily test for it.

Secondly, have your doctors considered Charcot Foot? Hopefully, you DON'T have this...but I only mention it because doctors oftentimes overlook it.

Keep taking those minerals, though, and if you continue to take the zinc, you'll need to add copper because, otherwise, you'll become deficient in copper.

[GFinDC]

Hi Greg,

I used to have sore joints, knees, shoulders, ankles, and a stiff neck too. I got the soy and nightshades out of my diet and that cleared up. Once in a while I have a little soreness in my right shoulder but not every day like before. The other thing I do is use iodized salt so I know I am getting enough iodine in my diet. I take B-12, a vit D, and a B complex once or twice a week, and a cal-mag-zinc once a week or so. I avoid multivitamins as they always cause me problems.

I avoid most processed gluten-free foods also, and eat naturally gluten-free foods instead. Avoiding alcohol also seems to help me. I don't eat much sugar unless it is in fruit or rarely I'll have some molasses in something. My diet is pretty plain I suppose but I feel better eating simple.

Just throwing out some ideas for free. No 2 cents needed unlike Lucy in the Peanuts.

[surfer]

You are the second person to mention nightshade foods. I had never heard of this before, and another member mentioned them under another post of mine. I'll discuss this with my doctors to see if there anything.

I don't feel terrible, just really getting frustrated that I cannot seem to shake the inflamation and (periodic) pain in my right foot. Really wierd, and have never had anything like this before. I'm only 41, and feel like I should be a pretty healthy person. I don't smoke, do drugs or even alcohol, and try to eat pretty much whole, healthy foods. I'm guessing that I have either been eating something which I didn't know had some gluten in it, and it has caused this problem; or there is something else going on and is just taking time to materialize as a diagnosis.

I spent some time looking at the information on Sjrogens Syndrome, and a lot of my symptoms appear to coorelate, but clearly this appears to take time to accruately diagnosis. I'm going to have my rheumatologist order the recommended bloodwork, and will also ask my opthalmologist to do the two eye-tests (for dryness). I'm not really having any dental problems at this time or issues with saliva, so I'm going to leave this for now.

I just want answers so I can move on with my life. I have walking issues, and this problem is really inhibiting me (currently) from living life as I am accostomed.

Alright, enough rambling... Thanks for your comments.

hi,have you looked into eating meat could cause your inflamation?

check it out and google it...very interesting.

surfer

[AVR1962]

Greg, did you find out what was cauing your pain. I had a situation recently that I think I connected my issues with. I also had the pain like you were describing. I was the first time around using hot packs on my leg and hot soaks on my foot which actually offered relief and in a few days it went away so I thought that was it.

Recently, it started back up again. For me, I figured it was the lack of nutrients. I had cut back on my Bcomplex, magnesium and stopped taking the omega3 10 days prior. I knew I had no gluten. Muscle spams had started along with the pain in my left foot and my muscles were feeling hard again. I link the pain in my foot to the lack of B, the magnesium to the spasms and omega 3 to the hard feeling in the muscles. This is my 3rd day back on and am doing better.