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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

knee pain from gluten?
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Hello Everyone,

I'd like to have your inputs and thoughts on my case in here. I started feeling knee pain all of a sudden almost 2 years ago. I don't remember of any trauma or injury happening, except for the fact that I was doing treadmill on a daily basis( Speed of 2.5 to 3 and incline of 9), for about 2 months until the pain started. I was also on a carb cycling diet to get in a better shape and was able to lose 15lbs(my current weight is 192lbs and I am 6'2", 32 Years of age). However, after the pain started( walking up/down stairs/sitting & standing/getting in and out of car/wearing shoes), everything went into the gutter. I saw an Orthopedic Doctor/Sports Med in May 2015 and he did some X-Rays diagnosing me with PFS (Patello Femoral Syndrome) and recommended physical therapy for 3 months which would fix the issue. As I started with therapy, I could barely cope with it since exercise would only make the pain worse. So I was injected with Cortisone in both knees and continue with therapy, however, after 2 months of it, there was barely any improvement. Since Cortisone was in effect, the pain was lesser than usual. However, as the effect wore off, it came back. Then in 2016, I saw another Sports Med who very conveniently confirmed the diagnosis of the 1st doctor, and recommended to get another shot and do more therapy. With the desperation to get myself fixed, I agreed and got the injections, which were followed by another round of fluid (Synvisc One) Injections. Thereafter, I did therapy for 3 months but no improvement whatsoever. Meanwhile, I also consulted a Rheumatologist to rule out any other issues. All tests related to Rheumatology were normal and so did the clinical examination suggest. Eventually, I went to another Ortho doctor who finally gave a different diagnosis, confirming I don't have PFS. 

Our family doctor asked to get some more tests done, like Bone Density, Gluten Sensitivity (TTG) etc. The results showed a very Low Bone Density ( almost Osteopenia) and high anti bodies for Gluten ( 160 ) as to opposed < 20.

Since then, I have been trying not to eat gluten intentionally, I do see some relief but still not much improvement. I am quite certain eating out results in contamination etc, and may be consuming gluten by mistake. From your experience , what do you think. Could it be gluten triggered knee pain or could it be some mechanical issue with the knee? It's been 1.5 months since I have been trying to eat gluten free.

Any thoughts/ suggestions would mean a lot.

Thanks for hearing me out.

 

 

Edited by Gunz
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3 minutes ago, Gunz said:

Hello Everyone,

I'd like to have your inputs and thoughts on my case in here. I started feeling knee pain all of a sudden almost 2 years ago. I don't remember of any trauma or injury happening, except for the fact that I was doing treadmill on a daily basis( Speed of 2.5 to 3 and incline of 9), for about 2 months until the pain started. I was also on a carb cycling diet to get in a better shape and was able to lose 15lbs. However, after the pain started( walking up/down stairs/sitting & standing/getting in and out of car/wearing shoes), everything went into the gutter. I saw an Orthopedic Doctor/Sports Med in May 2015 and he did some X-Rays diagnosing me with PFS (Patello Femoral Syndrome) and recommended physical therapy for 3 months which would fix the issue. As I started with therapy, I could barely cope with it since exercise would only make the pain worse. So I was injected with Cortisone in both knees and continue with therapy, however, after 2 months of it, there was barely any improvement. Since Cortisone was in effect, the pain was lesser than usual. However, as the effect wore off, it came back. Then in 2016, I saw another Sports Med who very conveniently confirmed the diagnosis of the 1st doctor, and recommended to get another shot and do more therapy. With the desperation to get myself fixed, I agreed and got the injections, which were followed by another round of fluid (Synvisc One) Injections. Thereafter, I did therapy for 3 months but no improvement whatsoever. Meanwhile, I also consulted a Rheumatologist to rule out any other issues. All tests related to Rheumatology were normal and so did the clinical examination suggest. Eventually, I went to another Ortho doctor who finally gave a different diagnosis, confirming I don't have PFS. 

Our family doctor asked to get some more tests done, like Bone Density, Gluten Sensitivity (TTG) etc. The results showed a very Low Bone Density ( almost Osteopenia) and high anti bodies for Gluten ( 160 ) as to opposed < 20.

Since then, I have been trying not to eat gluten intentionally, I do see some relief but still not much improvement. I am quite certain eating out results in contamination etc, and may be consuming gluten by mistake. From your experience , what do you think. Could it be gluten triggered knee pain or could it be some mechanical issue with the knee? It's been 1.5 months since I have been trying to eat gluten free.

Any thoughts/ suggestions would mean a lot.

Thanks for hearing me out.

 

 

You have Celiac, you need to eat gluten free all the time - not just "try".  I am guessing the doctor didn't give you any help with it?  Did they refer you to a GI doctor?

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1 minute ago, kareng said:

You have Celiac, you need to eat gluten free all the time - not just "try".  I am guessing the doctor didn't give you any help with it?  Did they refer you to a GI doctor?

The doctor recommended to try Gluten free diet first, since my symptoms didn't indicate Intestinal issues, which I still don't have. So for now, i haven't been referred to a GI for biopsy. Should I consider it?

Is there a difference between knee pain from Gluten as opposed to mechanical issues with the knee? 

Appreciate your response.

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I had a similar experience. Before being diagnosed with Celiac, i had chronic pain and swelling in my right knee that would flare up at time and linger for weeks. I was sent to a rheumatologist who did all sorts of tests and could not locate the source of pain and inflammation. Once I was diagnosed with celiac and totally eliminated gluten from my diet, within a month the pain and swelling completely disappeared. Perhaps adopting a totally gluten free diet may help. 

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28 minutes ago, bellamartino said:

I had a similar experience. Before being diagnosed with Celiac, i had chronic pain and swelling in my right knee that would flare up at time and linger for weeks. I was sent to a rheumatologist who did all sorts of tests and could not locate the source of pain and inflammation. Once I was diagnosed with celiac and totally eliminated gluten from my diet, within a month the pain and swelling completely disappeared. Perhaps adopting a totally gluten free diet may help. 

Hi, 

Thanks for the inputs. Did you get a biopsy done to confirm celiac? I haven't got the Biopsy done yet however, blood tests do suggest Gluten Intolerance. In your experience, do you recommend not eating out at all. or only eat out where it's certain the food isn't contaminated? I haven't been able to establish a hardline on my diet, but I am ready to do whatever it takes to get rid of the pain, so I can do more outdoor stuff or at least able to have normal days with no pain.

Thanks for taking your time out to reply.

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Please know that the TTg tests are not for "gluten intolerance"  They are for Celiac.  YOu need to eat gluten for further testing.  Celiac disease is a serious disease and can cause osteoporosis as you have seen.  Please don't take this casually.  the bone loss may have nothing to do with your messed up knee.  But Celiac can cause a lot of other issues, too.

 

Please educate yourself and find a doctor that will take Celiac seriously.

 

http://www.cureceliacdisease.org/symptoms/

 

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12 minutes ago, kareng said:

Please know that the TTg tests are not for "gluten intolerance"  They are for Celiac.  YOu need to eat gluten for further testing.  Celiac disease is a serious disease and can cause osteoporosis as you have seen.  Please don't take this casually.  the bone loss may have nothing to do with your messed up knee.  But Celiac can cause a lot of other issues, too.

 

Please educate yourself and find a doctor that will take Celiac seriously.

 

http://www.cureceliacdisease.org/symptoms/

 

Thanks Karen. I agree, I need to take it more seriously and probably look for a doctor who would consider this seriously. Could you refer me to a link or a starters guide for Gluten Free diet. I have found some forums online but a lot suggest even using Gluten free soaps, shampoos, etc. So I am not sure, what works what doesn't. 

I have also tried to eat gluten after being off it for a few weeks, and the day i consumed it, my knees were super soar and painful by end of that day. So I am pretty sure, consuming it makes it worse, just need to understand what all I need to do so the pain goes away completely.

 

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Here is some starting tips.  The website I gave you a link to is good for info.  they say not to worry about products that are not ingested.  Gluten cannot be absorbed through the skin

 

 

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32 minutes ago, Gunz said:

Hi, 

Thanks for the inputs. Did you get a biopsy done to confirm celiac? I haven't got the Biopsy done yet however, blood tests do suggest Gluten Intolerance. In your experience, do you recommend not eating out at all. or only eat out where it's certain the food isn't contaminated? I haven't been able to establish a hardline on my diet, but I am ready to do whatever it takes to get rid of the pain, so I can do more outdoor stuff or at least able to have normal days with no pain.

Thanks for taking your time out to reply.

yes, my celiac was confirmed via a biopsy. from my knowledge, that is the most definitive way to get a diagnosis. I resisted the test for sometime as i was a little scared of the procedure, but i was put out and woke up to the news that i had celiac disease. 

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2 hours ago, Gunz said:

The doctor recommended to try Gluten free diet first, since my symptoms didn't indicate Intestinal issues

Sadly you've not received good advice from your doctor. The stats show the majority of celiacs do not present with primarily intestinal issues. 

56 minutes ago, Gunz said:

I have also tried to eat gluten after being off it for a few weeks, and the day i consumed it, my knees were super soar and painful by end of that day. So I am pretty sure, consuming it makes it worse, just need to understand what all I need to do so the pain goes away completely.

This makes it simple. If you're not pursuing a diagnosis you need to proceed as if you have one. You need to adjust, both practically and emotionally, to being fully 100% gluten free permanently. It's about a state of mind. You'll need to educate yourself on which brands you can eat and which to avoid. This forum is a good source of advice but you may find a celiac group near you that can help as well. 

1 hour ago, Gunz said:

do you recommend not eating out at all. or only eat out where it's certain the food isn't contaminated?

Try and avoid it in the early stages whilst your getting used to the diet and healing. Eat whole foods, try and give your body the best fuel possible and take a multi vitamin as well. Check it of course for gluten-free, check everything from now on! In time, you find the best places to eat and the safe choices at the mainstream places too. You don't have to become a recluse, just be careful at the outset because there are mistakes you and the serving/kitchen staff could easily make.  

It's an immune system reaction and your immune system is set up to recognise the smallest amounts. So you need to be completely compliant, not 99%.

In time you will adjust and it WILL get easier. For now, ask for help here, at your doctors etc and read up on it to ensure you can get to grips with it as soon as possible.

Best of luck! :)

 

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1 hour ago, kareng said:

Please know that the TTg tests are not for "gluten intolerance"  They are for Celiac.  YOu need to eat gluten for further testing.  Celiac disease is a serious disease and can cause osteoporosis as you have seen.  Please don't take this casually.  the bone loss may have nothing to do with your messed up knee.  But Celiac can cause a lot of other issues, too.

 

Please educate yourself and find a doctor that will take Celiac seriously.

 

http://www.cureceliacdisease.org/symptoms/

 

This link is so helpful Karen, thanks much :)

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1 hour ago, bellamartino said:

yes, my celiac was confirmed via a biopsy. from my knowledge, that is the most definitive way to get a diagnosis. I resisted the test for sometime as i was a little scared of the procedure, but i was put out and woke up to the news that i had celiac disease. 

I think I'll get back to my doctor to reconsider referring to a GI. Meanwhile, will stick to Total gluten free diet, so the pain can be managed better.

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46 minutes ago, Jmg said:

Sadly you've not received good advice from your doctor. The stats show the majority of celiacs do not present with primarily intestinal issues. 

This makes it simple. If you're not pursuing a diagnosis you need to proceed as if you have one. You need to adjust, both practically and emotionally, to being fully 100% gluten free permanently. It's about a state of mind. You'll need to educate yourself on which brands you can eat and which to avoid. This forum is a good source of advice but you may find a celiac group near you that can help as well. 

Try and avoid it in the early stages whilst your getting used to the diet and healing. Eat whole foods, try and give your body the best fuel possible and take a multi vitamin as well. Check it of course for gluten-free, check everything from now on! In time, you find the best places to eat and the safe choices at the mainstream places too. You don't have to become a recluse, just be careful at the outset because there are mistakes you and the serving/kitchen staff could easily make.  

It's an immune system reaction and your immune system is set up to recognise the smallest amounts. So you need to be completely compliant, not 99%.

In time you will adjust and it WILL get easier. For now, ask for help here, at your doctors etc and read up on it to ensure you can get to grips with it as soon as possible.

Best of luck! :)

 

Thanks for your suggestions, will try to inculcate as much as I can, not that I have another option, but anything to get rid of the pain.

Appreciate your time :)

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Hi Gunz,

It would be a good idea to have your vitamin and mineral levels checked.  Celiac disease can cause malabsorption and that can lead to many problems and symptoms.  Our bodies really do need vitamins and minerals to function correctly.  When we don't get enough of certain vitamins and minerals we can have symptoms that vary widely.  you may have heard of scurvy, ricketts, pellagra and berie beri?  They are all diseases caused by nutrient malabsorption.

I had sore joints from 2 separate issues.  Eating potatoes/nightshades was the first problem.  And years later I had sore joints from low vitamin D.

You do have to be eating gluten for celiac testing to be accurate, usually 12 weeks for the blood antibodies tests and 2 to 4 weeks for the endoscopy.

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8 hours ago, Gunz said:

Hello Everyone,

I'd like to have your inputs and thoughts on my case in here. I started feeling knee pain all of a sudden almost 2 years ago. I don't remember of any trauma or injury happening, except for the fact that I was doing treadmill on a daily basis( Speed of 2.5 to 3 and incline of 9), for about 2 months until the pain started. I was also on a carb cycling diet to get in a better shape and was able to lose 15lbs(my current weight is 192lbs and I am 6'2", 32 Years of age). However, after the pain started( walking up/down stairs/sitting & standing/getting in and out of car/wearing shoes), everything went into the gutter. I saw an Orthopedic Doctor/Sports Med in May 2015 and he did some X-Rays diagnosing me with PFS (Patello Femoral Syndrome) and recommended physical therapy for 3 months which would fix the issue. As I started with therapy, I could barely cope with it since exercise would only make the pain worse. So I was injected with Cortisone in both knees and continue with therapy, however, after 2 months of it, there was barely any improvement. Since Cortisone was in effect, the pain was lesser than usual. However, as the effect wore off, it came back. Then in 2016, I saw another Sports Med who very conveniently confirmed the diagnosis of the 1st doctor, and recommended to get another shot and do more therapy. With the desperation to get myself fixed, I agreed and got the injections, which were followed by another round of fluid (Synvisc One) Injections. Thereafter, I did therapy for 3 months but no improvement whatsoever. Meanwhile, I also consulted a Rheumatologist to rule out any other issues. All tests related to Rheumatology were normal and so did the clinical examination suggest. Eventually, I went to another Ortho doctor who finally gave a different diagnosis, confirming I don't have PFS.

i have a very similar experience i never injured my knees. started getting mild joint pain in 2012 was told it was PFS and given exercises, they didn't help and caused me alot more pain. then in late 2015 its started to get worse saw a new doctor, got xrays and an mri and said PFS and sent me to a physio. the physio pushed me extremely hard on the first appointment and the exercises made the pain 100x worse. as a result of that appointment i couldn't for walk a few weeks, its the most pain i've ever been in. then after that everything got worse i couldn't drive, work, walk up stairs, bend, lift anything, every doctor since then seems to think its impossible for the exercises to make the pain worse and it must be in my head. made a third attempt at physio and still it only makes the pain worse i can do some of the begging exercises with minimal pain but the longer and harder its get the worse the pain gets. i had not improvement at all.

the only slight improvements i have made are from going for walks, walking up and down stairs sideways so it doesn't hurt. i have found swimming or even just walking in water has helped alot recently

they keep saying the muscle above my knee is weak and if i strengthen it, the pain will get better but doesn't really add up. im still honestly not sure if i have PFS or autoimmune joint pain as nothing really helps yet.

if i do something to aggravate it like squatting, it will hurt a little bit at the time then become unbearable a few hours later. does that happen to you?

what was the different diagnosis your ortho doctor gave you?

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2 hours ago, GFinDC said:

Hi Gunz,

It would be a good idea to have your vitamin and mineral levels checked.  Celiac disease can cause malabsorption and that can lead to many problems and symptoms.  Our bodies really do need vitamins and minerals to function correctly.  When we don't get enough of certain vitamins and minerals we can have symptoms that vary widely.  you may have heard of scurvy, ricketts, pellagra and berie beri?  They are all diseases caused by nutrient malabsorption.

I had sore joints from 2 separate issues.  Eating potatoes/nightshades was the first problem.  And years later I had sore joints from low vitamin D.

You do have to be eating gluten for celiac testing to be accurate, usually 12 weeks for the blood antibodies tests and 2 to 4 weeks for the endoscopy.

Hi,

I think that probably is the cause for my Low Vitamin D and B12 levels. My vitamin D was as low as 16, and after supplements it was 43 quite recently. I still take Calciferol orally once a week(60000IU) to maintain the levels. My B12 levels was 282 and after taking B12 capsules alternate days, it is now at 512.

I also got tested for Calcium which was normal and so were the Iron tests. I am trying to eat clean, whole foods and have a balanced diet but still continuing with multi vitamins to keep the levels maintained.

I have already got the blood test done for celiac and the results was positive ( 160 ) as opposed to <20 Antibodies.

I haven't got done the Biopsy yet, trying to eliminate gluten completely to see if that helps to alleviate some pain.

 

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16 minutes ago, emma6 said:

i have a very similar experience i never injured my knees. started getting mild joint pain in 2012 was told it was PFS and given exercises, they didn't help and caused me alot more pain. then in late 2015 its started to get worse saw a new doctor, got xrays and an mri and said PFS and sent me to a physio. the physio pushed me extremely hard on the first appointment and the exercises made the pain 100x worse. as a result of that appointment i couldn't for walk a few weeks, its the most pain i've ever been in. then after that everything got worse i couldn't drive, work, walk up stairs, bend, lift anything, every doctor since then seems to think its impossible for the exercises to make the pain worse and it must be in my head. made a third attempt at physio and still it only makes the pain worse i can do some of the begging exercises with minimal pain but the longer and harder its get the worse the pain gets. i had not improvement at all.

the only slight improvements i have made are from going for walks, walking up and down stairs sideways so it doesn't hurt. i have found swimming or even just walking in water has helped alot recently

they keep saying the muscle above my knee is weak and if i strengthen it, the pain will get better but doesn't really add up. im still honestly not sure if i have PFS or autoimmune joint pain as nothing really helps yet.

if i do something to aggravate it like squatting, it will hurt a little bit at the time then become unbearable a few hours later. does that happen to you?

what was the different diagnosis your ortho doctor gave you?

Hi Emma,

The ortho doctor didn't give a conclusive diagnosis, but did rule out PFS based off on the history I had provided, as well, after examination of the knee. He referred me to a Rheumat and he ruled out any Musculoskeletal issues, neither did the blood work insinuate anything related to Rheumatology. So that's when I was recommended to get tested for Celiac, and the blood tests confirmed much higher number of antibodies.

So I am trying to get off gluten to get rid off the pain. I am at a point where anything that can let me have a normal pain free life, I am up for it.

Have you got yourself tested for Celiac?

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On 31/05/2017 at 0:37 PM, Gunz said:

Hi Emma,

The ortho doctor didn't give a conclusive diagnosis, but did rule out PFS based off on the history I had provided, as well, after examination of the knee. He referred me to a Rheumat and he ruled out any Musculoskeletal issues, neither did the blood work insinuate anything related to Rheumatology. So that's when I was recommended to get tested for Celiac, and the blood tests confirmed much higher number of antibodies.

So I am trying to get off gluten to get rid off the pain. I am at a point where anything that can let me have a normal pain free life, I am up for it.

Have you got yourself tested for Celiac?

Yes i have celiac been gluten-free for 10 months, had an iron deficiency (was hoping that was the cause of knee pain) and am being treated for suspected sjogrens syndrome.

im surprised they didn't do other bloodwork for you, one of the first tests i had in relation to joint pain was for rheumatoid factor, ANA and a few other arthritis type diseases.

hopefully going gluten free will help with your pain

is your pain constant or does it come and go? do you have swelling or redness?

 

 

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23 hours ago, emma6 said:

Yes i have celiac been gluten-free for 10 months, had an iron deficiency (was hoping that was the cause of knee pain) and am being treated for suspected sjogrens syndrome.

im surprised they didn't do other bloodwork for you, one of the first tests i had in relation to joint pain was for rheumatoid factor, ANA and a few other arthritis type diseases.

hopefully going gluten free will help with your pain

is your pain constant or does it come and go? do you have swelling or redness?

 

 

Hi Emma,

 

Sorry for not being clear, but I was tested for RA factor , ANA, Iron Panel and pretty much every possible blood test that was related to Rheumatology or Deficiencies. My Iron and calcium results were normal however, Vitamin D and B12 were deficient, so been  taking supplements for those. I am hoping the same by being Gluten Free.

My pain is not always constant, though the most painful is doing stairs or sitting/getting up from chair. There are some days where left knee would pain but right knee would appear to be fine, and vice-versa. So to me it always appears that something triggers my pain, so hopefully eliminating Gluten helps.

Let me know if you have any suggestions from your experience. :)

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Guys,

A few other questions:

1) How long does it take to get some relief from Pain after being gluten free? I am sure it varies for everyone, but in my case, it's been 2 weeks since i have totally avoided gluten but i don't feel any better. In Fact, it's so weird that last night my right knee was paining & had tight hamstrings, but when i woke up, left knee was painful too, out of no where :( .

2) Is there a particular spot where the pain would be, or is it more migratory in nature. In both of my knees, I do have one spot ( right at kneecap) where it's always painful;, but at times, the lower part of knee also feels the pain (like today).

3) Do you any of you consume supplements like Activated Charcoal ( to get rid of toxins, in case you got glutened) or Good Zymes ( contains enzymes for proper absorption of nutrients). Recently a friend of mine recommended those but I am not sure, specially about the Charcoal thing.

Please let me know your thoughts.

 

Thanks :) 

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Here is the deal.  Celiac Disease is an autoimmune disorder like lupus, RA, or MS.  What is good about celiac disease is that the trigger is known -- gluten.  My MIL had MS.  She had a huge flare up each Spring.  Was confined to a wheelchair for those weeks until her flare up calmed down and ceased. Celiac disease is the same, but again, the trigger is known.   A tiny gluten exposure triggers a flare up.  For some it is short (week or two) for others, months.  It is not how long gluten remains in your GI tract.  It is how your body reacts to the gluten "invader".  Some folks have crazy responses.  

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On 02/06/2017 at 2:11 PM, Gunz said:

Hi Emma,

 

Sorry for not being clear, but I was tested for RA factor , ANA, Iron Panel and pretty much every possible blood test that was related to Rheumatology or Deficiencies. My Iron and calcium results were normal however, Vitamin D and B12 were deficient, so been  taking supplements for those. I am hoping the same by being Gluten Free.

My pain is not always constant, though the most painful is doing stairs or sitting/getting up from chair. There are some days where left knee would pain but right knee would appear to be fine, and vice-versa. So to me it always appears that something triggers my pain, so hopefully eliminating Gluten helps.

Let me know if you have any suggestions from your experience. :)

same stairs and squatting are the absolute worst for me. for pain relief ice and ibuprofen gel are the most helpful for me. for me exercise wise, i've given up on most of the physio exercises and am doing the most i can of movements that don't aggravate the pain. walking as much as i can and exercising as much as i can but stopping a soon as im in pain. im trying to do a little more each day and increase it.

my pain is often delayed a few hours, i usually feel a little pain at the time of exercises but then a few hours later its 100x worse.

i also find if i dont go for a walk or move around much during the day it will get worse. so its a balancing act between enough exercise and too much

i also have joint pain in my elbows which has improved a little from arm movements and using the lightest weights available.

knee sleeves help me alot too the pain is alot worse with out it. i also have to sleep with a pillow under my knees and laying with my legs straight is painful. if i sleep on my side i wake up in pain from that alone.

i would really recommend swimming or walking in water more than anything that has helped me the most recently. i was able to feel that muscle soreness from working out without the added knee pain which was a first in almost 2 years.

On 03/06/2017 at 2:12 AM, Gunz said:

Guys,

A few other questions:

1) How long does it take to get some relief from Pain after being gluten free? I am sure it varies for everyone, but in my case, it's been 2 weeks since i have totally avoided gluten but i don't feel any better. In Fact, it's so weird that last night my right knee was paining & had tight hamstrings, but when i woke up, left knee was painful too, out of no where :( .

2) Is there a particular spot where the pain would be, or is it more migratory in nature. In both of my knees, I do have one spot ( right at kneecap) where it's always painful;, but at times, the lower part of knee also feels the pain (like today).

3) Do you any of you consume supplements like Activated Charcoal ( to get rid of toxins, in case you got glutened) or Good Zymes ( contains enzymes for proper absorption of nutrients). Recently a friend of mine recommended those but I am not sure, specially about the Charcoal thing.

Please let me know your thoughts.

 

Thanks :) 

i wish i could tell you i have improvements from just being gluten free. but its been 10 months now and nothing has changed. crossing my fingers that you will be different. its definitely frustrating not knowing/

i have a particular stop in the outer side of each knee cap where the pain starts and is the worst. then the more pain im in its seems to spread to the top above my knee cap and the inside. its rarely at the bottom. more so a semi circle around the side and top of my knee cap. is yours similar to that?

 

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40 minutes ago, emma6 said:

same stairs and squatting are the absolute worst for me. for pain relief ice and ibuprofen gel are the most helpful for me. for me exercise wise, i've given up on most of the physio exercises and am doing the most i can of movements that don't aggravate the pain. walking as much as i can and exercising as much as i can but stopping a soon as im in pain. im trying to do a little more each day and increase it.

my pain is often delayed a few hours, i usually feel a little pain at the time of exercises but then a few hours later its 100x worse.

i also find if i dont go for a walk or move around much during the day it will get worse. so its a balancing act between enough exercise and too much

i also have joint pain in my elbows which has improved a little from arm movements and using the lightest weights available.

knee sleeves help me alot too the pain is alot worse with out it. i also have to sleep with a pillow under my knees and laying with my legs straight is painful. if i sleep on my side i wake up in pain from that alone.

i would really recommend swimming or walking in water more than anything that has helped me the most recently. i was able to feel that muscle soreness from working out without the added knee pain which was a first in almost 2 years.

i wish i could tell you i have improvements from just being gluten free. but its been 10 months now and nothing has changed. crossing my fingers that you will be different. its definitely frustrating not knowing/

i have a particular stop in the outer side of each knee cap where the pain starts and is the worst. then the more pain im in its seems to spread to the top above my knee cap and the inside. its rarely at the bottom. more so a semi circle around the side and top of my knee cap. is yours similar to that?

 

My pain is exactly what you described. In fact, when the Physio tried Taping my knee, they used to do a C tape right on that spot, to provide better knee tracking. So yea, my pain point is right at the knee cap (outer side of both knees) and at times, it's migratory. I have also experienced some elbow pain, but not as bad as knees. However, my fingers in both hands( usually pinky in left hand and index in right hand) get stiff at times and swollen. It sometimes happens couple of times a month or could rare as once a month.

I am hoping going gluten free helps. Some ortho docs have recommended me surgery ( based on PFS diagnosis), but I don't think that would help at all. So not sure what other options are out there to explore. :( 

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On 5/30/2017 at 1:18 PM, Gunz said:

Hello Everyone,

I'd like to have your inputs and thoughts on my case in here. I started feeling knee pain all of a sudden almost 2 years ago. I don't remember of any trauma or injury happening, except for the fact that I was doing treadmill on a daily basis( Speed of 2.5 to 3 and incline of 9), for about 2 months until the pain started. I was also on a carb cycling diet to get in a better shape and was able to lose 15lbs(my current weight is 192lbs and I am 6'2", 32 Years of age). However, after the pain started( walking up/down stairs/sitting & standing/getting in and out of car/wearing shoes), everything went into the gutter. I saw an Orthopedic Doctor/Sports Med in May 2015 and he did some X-Rays diagnosing me with PFS (Patello Femoral Syndrome) and recommended physical therapy for 3 months which would fix the issue. As I started with therapy, I could barely cope with it since exercise would only make the pain worse. So I was injected with Cortisone in both knees and continue with therapy, however, after 2 months of it, there was barely any improvement. Since Cortisone was in effect, the pain was lesser than usual. However, as the effect wore off, it came back. Then in 2016, I saw another Sports Med who very conveniently confirmed the diagnosis of the 1st doctor, and recommended to get another shot and do more therapy. With the desperation to get myself fixed, I agreed and got the injections, which were followed by another round of fluid (Synvisc One) Injections. Thereafter, I did therapy for 3 months but no improvement whatsoever. Meanwhile, I also consulted a Rheumatologist to rule out any other issues. All tests related to Rheumatology were normal and so did the clinical examination suggest. Eventually, I went to another Ortho doctor who finally gave a different diagnosis, confirming I don't have PFS. 

Our family doctor asked to get some more tests done, like Bone Density, Gluten Sensitivity (TTG) etc. The results showed a very Low Bone Density ( almost Osteopenia) and high anti bodies for Gluten ( 160 ) as to opposed < 20.

Since then, I have been trying not to eat gluten intentionally, I do see some relief but still not much improvement. I am quite certain eating out results in contamination etc, and may be consuming gluten by mistake. From your experience , what do you think. Could it be gluten triggered knee pain or could it be some mechanical issue with the knee? It's been 1.5 months since I have been trying to eat gluten free.

Any thoughts/ suggestions would mean a lot.

Thanks for hearing me out.

 

 

I'm sorry to hear about your pain.  I understand how frustrating it is to deal with chronic pain and not be able to get an answer as to what it is. Don't lose hope.

The answer to my complete body-wide, debilitating, five year chronic pain was Celiac Disease but it was called many things before Celiac because I didn't have any "Celiac" symptoms. It started with isolated hip pain that was "manageable"  and over five years spread throughout my body. I was managing pain with spinal injections, steroids and pain pills. But even with all of that, the pain never subsided. It wasn't until five years into it that I had a little nausea that lasted over three weeks and my doctor through in an endoscopy with my colonoscopy, that they happened to find my celiac. The damage was off the charts.

So, my advice would be to go back to eating gluten and then get an endoscopy because if you remove gluten from your diet you can mess up the tests. That may not be your answer but it's worth finding out. Once I heard I had it and my doctor said my pain might not be related to it and to give the diet a year to a year and a half to see if the pain went away - I was in. There was a possible light at the end of the tunnel. In three weeks, my brain fog was gone! It did take over a year for my pain to subside and over two for other symptoms but it was well worth it. 

But my pain didn't stay in one area and I also had chronic fatigue, brain fog, etc.  I hope you find your answer. Suffering is no fun. Good luck.

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Hi Guys,

I just thought of giving update on my case. I finally got my EGD done and unfortunately, the conclusion is I have Celiac. There was Villus atrophy and presence of Inflammatory Cells, looks like the atrophy of Villi isn't that worse yet, but of course, I need to get on strict gluten free diet right away. I am planning to see a Dietitian next week to have a healthy gluten free diet plan.

Any suggestions from the experts in here are most welcome and appreciated.

Thanks :) 

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