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Greg Rappaport

Celiac And Joint/bone Inflamation

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I am a 41 y.o. male and have been diagnosed with Celiac for about 15 years now. I seem to be managing my diet pretty well, evidenced by negative blood tests and biopsies. I do have osteopenia, and am taking 1000 mg. of calcium with vit. D daily in addition to a GNC vitamin (Ultra Mega Gold without Iron). I also was diagnosed 6 years ago with three mild herniated lower disks in my spine (didn't do surgery, and pain is pretty much gone). I am, however, always cracking my back and neck.

About a year ago I began to complain to my doctors about eye soreness & dryness. Not really pain; mostly soreness. Nothing has resolved this, and now it seems I go through the entire day with this soreness. It's best in the morning when I wake up.

Meanwhile for about 6 months now I have been complaining about ongoing soreness (some pain) in the palms of my hands (where my hands touch the steering wheel - the pads underneath my knuckles). This soreness/pain still persists today.

About 4 1/2 months ago I developed a severe pain in my right toe, which has developed into less pain, and more of an ongoing/daily inflamation problem around my first two metatarsal/phalangel joints as well on the bottom of my foot (just before the toes). It has really affected how I am walking. In short I cannot walk really well, and prior to this was perfectly healthy and very active. I have been seeing 3 podiatrists, have had x-rays (no findings), an MRI (edema, or tissue inflamation), and have been on anti-inflamatories, oral steriods, lasar treatments, and even have new orthotics for my shoes. 4 1/2 months have elapsed, and no relief! Really distressing. I cannot even play with my children or mow my lawn!

Okay, enough about that... Is there anybody else who has experienced anything close to this, or has any advice to share? The doctors all seem to go in circles, and I'm left wondering if there is something related to the celiac/malabsorption. One hypothesis from one of my podiatrists is that I may not be developing enough senovial fluid in my joints, and that this may be tied into the celiac/malabsorption. Again, I think my gluten-free diet is pretty solid, but it's tough to be certain at all times.

Thanks!!!

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I am a 41 y.o. male and have been diagnosed with Celiac for about 15 years now. I seem to be managing my diet pretty well, evidenced by negative blood tests and biopsies. I do have osteopenia, and am taking 1000 mg. of calcium with vit. D daily in addition to a GNC vitamin (Ultra Mega Gold without Iron). I also was diagnosed 6 years ago with three mild herniated lower disks in my spine (didn't do surgery, and pain is pretty much gone). I am, however, always cracking my back and neck.

About a year ago I began to complain to my doctors about eye soreness & dryness. Not really pain; mostly soreness. Nothing has resolved this, and now it seems I go through the entire day with this soreness. It's best in the morning when I wake up.

Meanwhile for about 6 months now I have been complaining about ongoing soreness (some pain) in the palms of my hands (where my hands touch the steering wheel - the pads underneath my knuckles). This soreness/pain still persists today.

About 4 1/2 months ago I developed a severe pain in my right toe, which has developed into less pain, and more of an ongoing/daily inflamation problem around my first two metatarsal/phalangel joints as well on the bottom of my foot (just before the toes). It has really affected how I am walking. In short I cannot walk really well, and prior to this was perfectly healthy and very active. I have been seeing 3 podiatrists, have had x-rays (no findings), an MRI (edema, or tissue inflamation), and have been on anti-inflamatories, oral steriods, lasar treatments, and even have new orthotics for my shoes. 4 1/2 months have elapsed, and no relief! Really distressing. I cannot even play with my children or mow my lawn!

Okay, enough about that... Is there anybody else who has experienced anything close to this, or has any advice to share? The doctors all seem to go in circles, and I'm left wondering if there is something related to the celiac/malabsorption. One hypothesis from one of my podiatrists is that I may not be developing enough senovial fluid in my joints, and that this may be tied into the celiac/malabsorption. Again, I think my gluten-free diet is pretty solid, but it's tough to be certain at all times.

Thanks!!!

Two thoughts....have you seen a rheumatologist? When you mentioned the dry/painful eyes, that can be a symptom of Sjorgen's Syndrome (which is a common auto-immune problem that Celiacs are more prone to get). There is a blood test for that, as well as rheumatiod arthritis, lupus and all the other autoimmune diseases that could cause the dry eyes and joint pain.

Regarding your foot pain....have you been tested for gout? My husband had problems with his foot for years, same as you, and nobody could figure it out! He had x-rays, steroid injections, saw several podiatrists, and he was given the dx of tendonitis, plantar fasicitis, bone spurs...blah blah blah. Finally saw his GP who tested his uric acid levels and they were off the charts! Now he is on gout meds and his foot is fine, except for the occasional flare-up. Anyway, I just thought I would mention it in case you hadn't been tested for that.

I hope you get some answers soon!

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Wow...your symptoms sound just like the ones I had last year. After getting glutened at a potluck, I started having the similarly weird symptoms. My feet actually progressed to stress fractures. The best way I can describe the feeling in my feet is that it was like my bones were floating in bags of jelly--and the pain and instability were terrible. All the joints hurt, and I felt as though I was falling over and having difficulty walking. One foot was swollen, and all the doctors would do is recommend specially made orthotics. I also noticed that my eyes were extremely dry and sore, making it hard to do my work in front of the computer. After doing a lot of research when the symptoms didn't resolve themselves, I came to the conclusion that I was probably suffering from deficiencies in zinc, manganese, and possibly silicon, a situation that was causing unhealthy tendons and ligaments. I read that I should take the chelated forms of zinc and manganese, and a clerk at the local healthfood store recommended BioSil for the silicon. She had told me that it supports tendon health, but the bottle also says that it promotes healthy bones and joints. I don't know if it was one, two, or all three supplements that helped, but my pain and disability began to clear up within four days. In two weeks, I was out of the walking cast (on the worst fractured foot) and walking normally. I can even wear high heels again! I don't know if this is what's causing your particular problems, but it wouldn't hurt to buy some chelated zinc, chelated manganese, and BioSil.

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Thank you for this inof, I too am having similiar problems. Is manganese different from magnesium?

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I am, however, always cracking my back and neck.

About a year ago I began to complain to my doctors about eye soreness & dryness. Not really pain; mostly soreness. Nothing has resolved this, and now it seems I go through the entire day with this soreness. It's best in the morning when I wake up.

Meanwhile for about 6 months now I have been complaining about ongoing soreness (some pain) in the palms of my hands (where my hands touch the steering wheel - the pads underneath my knuckles). This soreness/pain still persists today.

About 4 1/2 months ago I developed a severe pain in my right toe, which has developed into less pain, and more of an ongoing/daily inflamation problem around my first two metatarsal/phalangel joints as well on the bottom of my foot (just before the toes).

When you say cracking in your neck, do mean when you just turn your head? I have that alot and have for awhile now. The stiff neck has gone away, thank goodness, that was quite painful. I also have problems with my low back.....switched beds and it did seem to help but it's back. Glucosamine has helped me.

Curious about your hands and feet, as I am having a problem as well. I had 2 of my fingers fractured a few years back and now I get a burning sensation in those fingers. Last time I mowed the grass my hands tingled like they were numb. My feet have been not wanting to bend at the toes, they have been getting hot and they feel swollen but my hands are not swollen. I will from time to time get sharp, pins and neddles stabbing pains in between my toes and in my eyes.

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What anti-inflammatories are you taking?

Just thoughts here...

If you are taking advil or Ibuprofen...and you are sensitive to salicylates it can interefere with your metabolism over long periods of time. You may not know you are sensitive to salicylates without elimination and challenge. There is no test for it.

My feet hurt terribly prior to diagnosis. I was diagnosed with Fibromyalgia and told to take Ibuprogen every for hours for bone joint and muscle pain. I did it. Within 2 years I was terribly depressed, swollen in my whole body, and had terrible aching feet bones. When I stopped the salicylates (after finding chronic salicylic acid poisoning on the internet) I got a lot better very quickly. However, I didn't know I had Celiac at the time and that was diagnosed about 8 months after the salicylate sensitivity. Anyway, the combination of going gluten free, avoiding salicylates and supplementing with Calcium and D have resolved the bone problems I had with my feet. I used to walk hunched over and had to step carefully and walking was very painful. My feet were swollen but it was the actual bones that hurt. Anyway I am only 11 months gluten free and this is totally resolved and I no longer have any foot bone pain at all. I can even run a bit.

Gout often effects the big toe, so I agree with the suggestion to check that out and the other suggestions are good too, Sjrojens, Auto-immune problems...certainly check those out.

Another thought.

I have a family member who was treated for a groin injury that didn't heal for a long time. He was told to take anti-inflammatories...stretch and rest. After a year with no healing the Dr. said Let's X-Ray, and sure enough, there were 2 hairline fractures of the pelvis. So the Dr. said definitely do not take anti-inflammatories if you are then stop immediately and take calcium and D. When they asked about the anti-inflammatories the Dr. said that Ibuprofen and Aleve can interfere with bone healing. They impair the way calcium is absorbed. They can actually weaken the bones. I don't know if any of this is true...but it seemed to weaken his bones...and it certainly seemed to weaken mine when I took it daily for several years.

I hope this isn't the situation for you...as I have no idea what you take or whether you are sensitive to it...but I thought I would post our experiences just in case.

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Yes manganese is different from magnesium. I tried to find a nice comparison website but I could not find one.

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Manganese and magnesium are two complete different elements on the periodic table. Totally unrelated to each other :)

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Two thoughts....have you seen a rheumatologist? When you mentioned the dry/painful eyes, that can be a symptom of Sjorgen's Syndrome (which is a common auto-immune problem that Celiacs are more prone to get). There is a blood test for that, as well as rheumatiod arthritis, lupus and all the other autoimmune diseases that could cause the dry eyes and joint pain.

Regarding your foot pain....have you been tested for gout? My husband had problems with his foot for years, same as you, and nobody could figure it out! He had x-rays, steroid injections, saw several podiatrists, and he was given the dx of tendonitis, plantar fasicitis, bone spurs...blah blah blah. Finally saw his GP who tested his uric acid levels and they were off the charts! Now he is on gout meds and his foot is fine, except for the occasional flare-up. Anyway, I just thought I would mention it in case you hadn't been tested for that.

I hope you get some answers soon!

I saw a rheumatologist about 5 years ago when I had my back MRIs and herniated disc diagnosis. I was actually thinking about paying him another visit... I will definitely discuss the blood test for Sjorgen's Syndrome - no brianer! I was already tested for rheumatoid arthritis (RA) and gaut, and don't have either. My podiatrist wants to do a cortizone injection in my phelangel joint, but I am resisting this until I feel all other (less invasive) avenues have been tested and other possible diagnoses ruled out. Obviously if I was diagnosed for example with RA a cortizone injection would be more plausible. Thanks for the feedback!!!

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Wow, I'm not alone. It is so easy to feel as if you're the only one on Earth with these symptoms. :unsure: I will definitely look into the BioSil, and was actually already wondering about glucosamine as well. Would you be able to e-mail me more information (or a picture of) the BioSil? I will also look at the chelated manganese and zinc. Thanks so much for the suggestions. I greatly appreciate your feedback.

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What anti-inflammatories are you taking?

Just thoughts here...

If you are taking advil or Ibuprofen...and you are sensitive to salicylates it can interefere with your metabolism over long periods of time. You may not know you are sensitive to salicylates without elimination and challenge. There is no test for it.

My feet hurt terribly prior to diagnosis. I was diagnosed with Fibromyalgia and told to take Ibuprogen every for hours for bone joint and muscle pain. I did it. Within 2 years I was terribly depressed, swollen in my whole body, and had terrible aching feet bones. When I stopped the salicylates (after finding chronic salicylic acid poisoning on the internet) I got a lot better very quickly. However, I didn't know I had Celiac at the time and that was diagnosed about 8 months after the salicylate sensitivity. Anyway, the combination of going gluten free, avoiding salicylates and supplementing with Calcium and D have resolved the bone problems I had with my feet. I used to walk hunched over and had to step carefully and walking was very painful. My feet were swollen but it was the actual bones that hurt. Anyway I am only 11 months gluten free and this is totally resolved and I no longer have any foot bone pain at all. I can even run a bit.

Gout often effects the big toe, so I agree with the suggestion to check that out and the other suggestions are good too, Sjrojens, Auto-immune problems...certainly check those out.

Another thought.

I have a family member who was treated for a groin injury that didn't heal for a long time. He was told to take anti-inflammatories...stretch and rest. After a year with no healing the Dr. said Let's X-Ray, and sure enough, there were 2 hairline fractures of the pelvis. So the Dr. said definitely do not take anti-inflammatories if you are then stop immediately and take calcium and D. When they asked about the anti-inflammatories the Dr. said that Ibuprofen and Aleve can interfere with bone healing. They impair the way calcium is absorbed. They can actually weaken the bones. I don't know if any of this is true...but it seemed to weaken his bones...and it certainly seemed to weaken mine when I took it daily for several years.

I hope this isn't the situation for you...as I have no idea what you take or whether you are sensitive to it...but I thought I would post our experiences just in case.

No longer on the antiinflamatories. Was taking Oxaprozin (Daypro) 1200mg. for about three weeks; then switched to Lodine for about 2 weeks; then was put on oral steriods for two weeks; and finally back on Oxaprozin for another two months. I finally complained about stomach pain and stopped taking the meds altogether! I'll ask my doctors about the salicylates.

My mother was diagnosed with Fibromylagia about three years ago. Is this genetic? I have been gluten free for about 15 years, and ongoing bloodwork and biopsies appear to indicate positive results. Of course I cannot alwasy say for sure that I'm totally gluten-free (I don't get any rashes or breating problems when I ingest gluten.) Perhaps I need to reassess my diet for total gluten-free accuracy... I've been somewhat slack in recent years.

I definitely don't have gaut. This was ruled out early on. I will definitely ask about a blood test for Sjrojens. Another member also suggested this. Thanks!

Yes, I'm no longer on the antiinflamatories, and have been taking 1000 mg. calcium + magnesium and vit. D for at least 6 years now.

Thanks so much for all of your feedback!!! I appreciate reading your comments. :)

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Thanks for the glucosamine suggestion. I was actually thinking about this and will try it out in consultation with my doctor. Yes, the cracking is simply turning my head or stretching my back. It seems as if my entire body cracks at times!!! I'm alwasy told this is "normal" - just the senovial fluid moving around. I think it is abnormal... guess that's why I'm not a doctor.

Thanks so much for your comments and feedback. Regards.

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Sounds like you are on a good path to fiuring it all out.

I do not know if Fibromylagia is genetic.

I was just misdiagnosed with Fibromyalgia...it turns out I do not have it at all.

All my fatigue and muscke bone joint pain and depression and anxiety were caused entirely by gluten. Getting rid of gluten resolved all of the physical and mental problems I had for 7 years. Hmmm wonder if she is gluten intolerant or Celiac?

I have often wondered if Fibromyalgia is a misdaignosis of Celiac for many many people.

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Here's a site for BioSil so that you can see what it looks like:

http://www.luckyvitamin.com/p-13796-natural-factors-biosil-ch-osa-advanced-collagen-generator-30-ml-formerly-by-jarrow-natrol#tabs

For all of you out there with creaking joints and crunching necks, it may very well be that you're experiencing connective tissue problems. I swear--doctors have no clue what is wrong when connective tissues are involved. I hope you WILL try the BioSil, chelated zinc, and chelated manganese--I have my life back after I'd begun to think that I would be forever disabled. Our bodies simply don't function properly when our tendons, ligaments, and cartilage are suffering from nutritional deficiences. The only product that is somewhat expensive is the BioSil, but the other two products are pretty cheap.

Please let us know if you feel better. Personally, I don't take glucosamine or chondroitin because they're derived from crustaceans, and many people with celiac (like myself) can't tolerate iodine. When I eat a crustacean accidentally, my joints become extremely painful.

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I was going to mention Sjogren's too. There is a correlation between Celiac and Sjogren's. I have lots of sjogren's symptoms but negative bloods. But lots of sjogren's sufferer's have negative bloods - about 30% if I remember correctly. It would explain the joint pain as well as its a connective tissue autoimmune diseases - they call it a cousin of lupus.

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A couple of years ago I had to stop doing certain upper body workouts because I developed osteoarthritis in my right AC joint (shoulder). I have also had pain when walking up stairs of hills under my left kneecap for years. Knee pain is gone and shoulder pain is minimal and swelling is down after being gluten free.

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I was going to mention Sjogren's too. There is a correlation between Celiac and Sjogren's. I have lots of sjogren's symptoms but negative bloods. But lots of sjogren's sufferer's have negative bloods - about 30% if I remember correctly. It would explain the joint pain as well as its a connective tissue autoimmune diseases - they call it a cousin of lupus.

So what do you do (or can you do) to manage any symptoms you are having? I am definitely going to ask my doctor to do the blood test for this.

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I also suggested Sjogrens on another of your posts. Definitely look into that! I take fish oil 3 a day, a multi vitamin, magnesium, Vitamin D, which I am going to post a poll here to find out how many of us have Vit. D deficiencies, vitamin C, and a multi that has Glucosamine, MSM, and Chondroitin.

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Have had the same symptoms for a couple of years except in my hands more than my feet. My fingers and toes are also twisting a bit out of alignment. I'm a programmer so painful eyes and painful hands can make things... difficult.

No rheumatoid or inflammatory markers. Doc is clueless and I've basically given up on figuring it out at this point. I just take the max possible IB dose every day.

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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!

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So what do you do (or can you do) to manage any symptoms you are having? I am definitely going to ask my doctor to do the blood test for this.

It really depends on how bad you are at the time. Sjogren's/Lupus and all those connective tissue diseases work in similar ways in that you have *flares*, they can last days, months, years- it really depends. The medications that are used to treat such diseases are scary. I am not kidding. So at the moment I am starting to focus on diet, there is a book called "The lupus recovery diet" which is basically a no inflammation diet. So I think I need to start doing something like that because the medication I was on last year is awful and I really don't want to go back on them again.

There is someone on here - Ravenwood I think? Who had similar things to me but after being gluten free for 8 months (I think??) went into remission with her connective tissue stuff. So keep in mind that Celiac can absolutely cause all the weird things that you have going on. I am gluten free 7 months - and my other symptoms haven't gone into remission.boo!

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Have had the same symptoms for a couple of years except in my hands more than my feet. My fingers and toes are also twisting a bit out of alignment. I'm a programmer so painful eyes and painful hands can make things... difficult.

No rheumatoid or inflammatory markers. Doc is clueless and I've basically given up on figuring it out at this point. I just take the max possible IB dose every day.

If your fingers are twisting you need need to see a rheumy asap. There are so many different kinds of Autoimmune arthritis - not just RA! The only thing that shows on my bloods are CRP and ESR. No RA or Sjogren's or ANAs or anything. You can be negative on all your tests and still have connective tissue disease.

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What anti-inflammatories are you taking?

Just thoughts here...

If you are taking advil or Ibuprofen...and you are sensitive to salicylates it can interefere with your metabolism over long periods of time. You may not know you are sensitive to salicylates without elimination and challenge. There is no test for it.

What are salicylates? How do I know if I am ingesting them? Are they an ingredient in NSAIDs? I usually don't take too many OTC medications.

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I also suggested Sjogrens on another of your posts. Definitely look into that! I take fish oil 3 a day, a multi vitamin, magnesium, Vitamin D, which I am going to post a poll here to find out how many of us have Vit. D deficiencies, vitamin C, and a multi that has Glucosamine, MSM, and Chondroitin.

I have been taking Flax Seed Oil (Omega 3,6 & 9) for about 3 months now, and have noticed no difference. I just started taking chelated forms of calcuim, zinc, magnesium and other minerals as well as the Biosil another person recommended as well as an herbal joint-relief supplement called Zyflammend. My cousin, who is a Jefferson graduate and anesthesiologist in Washington DC, told me this morning to stop the Biosil and Zyflammend and see an internist to discss my blood sedimentation rates, the test for Sjorgrens Syndrome, and also a Lyme titer test.

I hate getting mixed signals, especially from a doctor in my own family!!! Another member earlier mentioned that doctor's can't seem to get her symptoms straight... I kinda empathize with her, as I often feel like the doctors run my in circles. Really frustrating!

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