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CoachAng

Testing for Gluten Sensitivity

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Hello, I am not new to this forum but may be my first post.  I am feeling somewhat lost and at wits end.  I started having symptoms back in 2012 and I have been fighting for answers ever since.  Let me start by saying my brother has celiac disease diagnosed by bloodwork and then confirmed via having a scope done.  He has it bad, just having bread touch his food puts him in bed for days.  

When I started having health issues back in 2012, Celiac did not cross my mind at first.  I never had the urgent bowel issues like he has.  My initial symptoms were bloating and bladder urgency.  I went to countless doctors and had several rounds of bloodwork done, and still having blood draws to this day.

 Initially, I did not test positive for any issues with my thyroid, but now I am showing as hypothyroid and having a positive ANA along with ds-DNA, indicative of possibly Lupus.  Several people have told me gluten and grains in general could still be my issue, despite having okay bloodwork.

I have always been very skinny, until after my kids were born.  I was able to lose the weight, but I had to exercise like mad to get down to my regular size.  Once my health issues started in 2012, I have done nothing but gain weight. I am now 60 pounds overweight.  I can exercise every day of the week and never lose a single pound.  

I have very low stomach acid which makes it hard for me to digest large volumes of animal protein.  Every time I try to get away from grains, I find myself starving.  

I have had IgG boodtests done and I do show positive sensitivity to lots of grains and some dairy products, but not sure if this counts as non-celiac gluten sensitivity or if I am just showing a reaction to these foods as I had recently consumed them in large volumes prior to the testing.  Most of my regular foods showed as positive. 

I feel like I am spinning my wheels with the doctors.  I am sensitive to supplements and can’t take most of what was offered to me.  I can take them for 3-4 days, but then have reactions including all over body aches, neuropathy, etc. So we have to approach my health with diet. I take no prescription meds as I have chosen to get to the root of my problem.

With my brother having bad celiac disease, am I at higher risk?  Is this common to run in families?  Has anyone else been unable to get answers, but felt better going grain free?

i am looking for support and guidance.  I can’t seem to find it anywhere else.  I apologize if I posted this in the wrong area.  I have read some posts on here over the years, but not sure on protocols.

Thank you for listening. 

Ang 

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Astonishing is that you with such complains and positive family for celiac and you did not get biopsy testing. I would recommend that even with negative blood tests. The risk of celiac in family members is around 8-10%and this is very high compared to 1% general risk.   Having hypothyroid increases the chance of having celiac further. 

See this on family risk and also on indication for biopsy;

https://doi.org/10.1177%2F2050640619844125 

Al-toma, consultant gastroenterologist

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Yes, celiac runs in families. You can have testing done to see if you carry the chromosomes that predispose you to it. There are many folks who have the chromosomes who never develop celiac, but it is my understanding that if you don’t have those chromosomes then you probably don’t have celiac.... with the caveat that they are finding more genetic markers as time progresses.

If your brother has celiac, you are at risk, but not guaranteed to develop celiac disease. All celiacs have to be extremely careful about accidental contact with gluten. It can be debilitating. Some of us are extremely extremely reactive.

You need to be consuming gluten during testing for celiac and to go to a doctor who is celiac aware. This forum has files attached which help folks new to the disease... those may help you too. 

Hashimotos disease of the thyroid is an autoimmune disease that sometimes runs hand in hand with celiac. Autoimmune diseases seem to not run in isolation.  Hashimotos often expresses as hypothyroid. That is not to say that is what is going on with you... just be aware that if you end up finding out you do have an autoimmune disease, you may have another, too. 

I am not a medical person, nor do I pretend to know much of anything, but I do know that for me, after years and years of pain and misdiagnoses, it was rather a relief to have a GI doctor agree to test me and then find out there was a name for what was wrong with me, and a simple solution. Weird thing, too... I found out a few months after diagnosis that my great grandpa had died of celiac related disease. No one had ever mentioned it. 

 

 

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39 minutes ago, Altoma said:

Astonishing is that you with such complains and positive family for celiac and you did not get biopsy testing. I would recommend that even with negative blood tests. The risk of celiac in family members is around 8-10%and this is very high compared to 1% general risk.   Having hypothyroid increases the chance of having celiac further. 

See this on family risk and also on indication for biopsy;

https://doi.org/10.1177%2F2050640619844125 

Al-toma, consultant gastroenterologist

Thank you so much.  No doctor would refer me to a gastro doctor, so I made an appointment myself without referral.  I took all my copies of bloodworkwith me and begged for help.  I explained my situation. He was one of the best in my town.  I was told to throw all my integrative tests in the trash and to gain 20 pounds and I would feel better.  At the time I was my normal thin self.  He said my bloodwork looked good and I was not a risk factor.  I may try to see another specialist and see if anyone is willing to help with a scope.  Thank you so much. 

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Did you actually get a complete celiac panel?  

https://www.verywellhealth.com/celiac-disease-blood-tests-562694

Doing allergy testing (IgG) is well sort of helpful, but not very accurate per all the leading allergy groups.  You can google that.  

Since 2012, have you ever thought about going gluten free for six months?  Unless you really need a firm diagnosis, it is something to consider.  My hubby did that some 20 years ago and is healthy.  Oddly,  I was  diagnosed with celiac disease about 12 years later (biopsy confirmed).    It can be helpful to have a diagnosis, but it might be better to feel good.  

 

Edited by cyclinglady

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43 minutes ago, rehh05 said:

Yes, celiac runs in families. You can have testing done to see if you carry the chromosomes that predispose you to it. There are many folks who have the chromosomes who never develop celiac, but it is my understanding that if you don’t have those chromosomes then you probably don’t have celiac.... with the caveat that they are finding more genetic markers as time progresses.

If your brother has celiac, you are at risk, but not guaranteed to develop celiac disease. All celiacs have to be extremely careful about accidental contact with gluten. It can be debilitating. Some of us are extremely extremely reactive.

You need to be consuming gluten during testing for celiac and to go to a doctor who is celiac aware. This forum has files attached which help folks new to the disease... those may help you too. 

Hashimotos disease of the thyroid is an autoimmune disease that sometimes runs hand in hand with celiac. Autoimmune diseases seem to not run in isolation.  Hashimotos often expresses as hypothyroid. That is not to say that is what is going on with you... just be aware that if you end up finding out you do have an autoimmune disease, you may have another, too. 

I am not a medical person, nor do I pretend to know much of anything, but I do know that for me, after years and years of pain and misdiagnoses, it was rather a relief to have a GI doctor agree to test me and then find out there was a name for what was wrong with me, and a simple solution. Weird thing, too... I found out a few months after diagnosis that my great grandpa had died of celiac related disease. No one had ever mentioned it. 

 

 

I do know autoimmune disease runs rampant on my moms due of the family.  She has diabetes and now psoriasis, something with her thyroid and really bad arthritis.  Her sister was a type 1 diabetic and died when she was 47.  My cousin died while on a jog at age 48.  No one has lived past 72 on her side of the family.  No one except my brother and I believe that our health issues stem from diet. So, no one else in the family has been tested to see if early deaths were due to celiac.  It truly scares me. 

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41 minutes ago, cyclinglady said:

Did you actually get a complete celiac panel?  

https://www.verywellhealth.com/celiac-disease-blood-tests-562694

Doing allergy testing (IgG) is well sort of helpful, but not very accurate per all the leading allergy groups.  You can google that.  

Since 2012, have you ever thought about going gluten free for six months?  Unless you really need a firm diagnosis, it is something to consider.  My hubby did that some 20 years ago and is healthy.  Oddly,  I was  diagnosed with celiac disease about 12 years later (biopsy confirmed).    It can be helpful to have a diagnosis, but it might be better to feel good.  

 

I had 3 of those tests done, the anti-Gliadin antibodies, anti-tissue transglutaminase, and total serum iga.  I was told all was okay.  I am trying to get copies of the bloodwork and I can share my numbers.  

I did go gluten free for 2 months, but did not see much change.  I was also dairy free, as well.  It’s possible that I did not give it enough time.  I bailed because I was having problems eating more meat to get calories and felt off. I personally don’t need a specific diagnosis.  It would be good to know for family history and I think as concrete evidence that I have to be gluten free with no cheats.

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I should add that my Integrative doctor recently provided me with a lab slip to have my HLADQ2 and HLA DQ8 genes tested.  She said that if I tested positive, I should remove gluten from my diet forever even if I were not symptomatic. However, I called my insurance and they will not pay for the test as it is considered exploratory. They quoted me around $400 to have it done out of my pocket.

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I struggled for years with many of the things you mention.  Had countless blood tests done but never the Deamidated Gliadin IgA and IgG.  Eventually started having neurological issues, and a neurologist ran those tests along with others.  Turns out they were more than 5 times higher than they should have been. He referred me to a gastroenterologist, who did an endoscopy, which came back positive for celiac.  I would make sure they do the full panel for celiac disease.  

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22 minutes ago, CoachAng said:

I should add that my Integrative doctor recently provided me with a lab slip to have my HLADQ2 and HLA DQ8 genes tested.  She said that if I tested positive, I should remove gluten from my diet forever even if I were not symptomatic. However, I called my insurance and they will not pay for the test as it is considered exploratory. They quoted me around $400 to have it done out of my pocket.

Genes?  About 35% of the population carries the celiac genes, but only about 1% go on to develop celiac disease.  Gene testing typically is used to help rule out celiac disease.  Odds are you have those genes of you have a sibling with celiac disease.  Why bother getting tested?    Who knows, but later if you try to get life insurance, you might be denied.  

I think two months of the diet is not enough.  You need six months to a year.  

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33 minutes ago, Gluten-free me said:

I struggled for years with many of the things you mention.  Had countless blood tests done but never the Deamidated Gliadin IgA and IgG.  Eventually started having neurological issues, and a neurologist ran those tests along with others.  Turns out they were more than 5 times higher than they should have been. He referred me to a gastroenterologist, who did an endoscopy, which came back positive for celiac.  I would make sure they do the full panel for celiac disease.  

Have your neurological symptoms improved by going gluten free?  

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24 minutes ago, cyclinglady said:

Genes?  About 35% of the population carries the celiac genes, but only about 1% go on to develop celiac disease.  Gene testing typically is used to help rule out celiac disease.  Odds are you have those genes of you have a sibling with celiac disease.  Why bother getting tested?    Who knows, but later if you try to get life insurance, you might be denied.  

I think two months of the diet is not enough.  You need six months to a year.  

Thank you so much for this feedback.  I was not aware that it would take 6 months to a year to feel better.  I personally would rather not have an official diagnoses.  I never thought about insurance ramifications.  Knowing my brother has it and I am showing signs of some autoimmunity, but yet to be diagnosed, I think removing gluten and maybe all grain would be in my best interest.  I just have so many random symptoms, some come and go, some stay.  But it just seems so off.

i used to be a long distance runner and had to give up my joy of running due to all these issues.  I would love to be myself again - no fatigue, skins itchiness, ringing ears, bloatiness to the extreme, weight gain, etc.  

Thank you all for the guidance you’ve given me.  People just look at me funny since I have gained so much weight.  And when I even dare say something about gluten, I basically get the eye roll.  But to have so many symptoms, and a brother that is a bad celiac, and a family history of autoimmune, I think i am a fool if I don’t explore this gluten free lifestyle more seriously.  I was also advised I would cause more damage if I went gluten free and did not need to.  

 

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1 hour ago, Gluten-free me said:

I struggled for years with many of the things you mention.  Had countless blood tests done but never the Deamidated Gliadin IgA and IgG.  Eventually started having neurological issues, and a neurologist ran those tests along with others.  Turns out they were more than 5 times higher than they should have been. He referred me to a gastroenterologist, who did an endoscopy, which came back positive for celiac.  I would make sure they do the full panel for celiac disease.  

Wow!  There are not many of us who just test positive to only DGP.  I am so glad that my doctor did run the full panel.  Thanks for sharing.  

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Not true.  A gluten-free diet is not bad for anyone.  But it can be bad because lots of people consume gluten-free junk food.  Junk food is junk food.  You do have to be careful about consuming too much rice (arsenic issues) and eat a well-balanced diet since gluten-free flours are not fortified.  

My kid has Raynaud's.  Her first autoimmune.    It is not in her chart.  Her doctor saw the blue fingers and asked me what I wanted to do.  Nothing.  No medically known treatment.  Just the potential for her to be denied medical (if healthcare changes) or life insurance.  She has been tested for celiac disease (never genetic) because it would impact where she went to college.  So far, no celiac disease.  

Consider an autoimmune Paleo diet which is also gluten-free.  There is some budding research showing that this diet is not quackery.  

Hubby got the eye rolling  all the time.  With my diagnosis, that kind of stopped.  I am a very vocal celiac!  

You can get back to running.  I did.  Just baby yourself until you heal.  Lots of time is needed.  

Edited by cyclinglady

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41 minutes ago, cyclinglady said:

Not true.  A gluten-free diet is not bad for anyone.  But it can be bad because lots of people consume gluten-free junk food.  Junk food is junk food.  You do have to be careful about consuming too much rice (arsenic issues) and eat a well-balanced diet since gluten-free flours are not fortified.  

My kid has Raynaud's.  Her first autoimmune.    It is not in her chart.  Her doctor saw the blue fingers and asked me what I wanted to do.  Nothing.  No medically known treatment.  Just the potential for her to be denied medical (if healthcare changes) or life insurance.  She has been tested for celiac disease (never genetic) because it would impact where she went to college.  So far, no celiac disease.  

Consider an autoimmune Paleo diet which is also gluten-free.  There is some budding research showing that this diet is not quackery.  

Hubby got the eye rolling  all the time.  With my diagnosis, that kind of stopped.  I am a very vocal celiac!  

You can get back to running.  I did.  Just baby yourself until you heal.  Lots of time is needed.  

Thank you, thank you, thank you!  I do have the energy to jog again.  It’s hard now that I am so much heavier.  If I start trying again, does this just add more inflammation or would it actually be good for my body?  I don’t want to cause more issues.  I will definitely look into the autoimmune paleo diet.  Thanks so much!

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10 hours ago, CoachAng said:

Have your neurological symptoms improved by going gluten free?  

Yes, as much as they ever will.  I no longer need to use a walker to remain upright; however, I still have neuropathy in my hands and feet and poor balance.  My neurologist says I won’t ever regain full function as I have too much damage from years of being undiagnosed.  He feels I have had it my entire life, but I wasn’t diagnosed until I was 60.  I’ve had digestive issues since I was an infant, but in my late 20s I quit complaining about them to doctors as no one could ever find a cause.  I just learned what didn’t make me feel well and didn’t eat it.  Unknowingly, I was consuming very little gluten, which in hindsight probably led to the difficulty in diagnosing me, but also indicates how extremely sensitive I am to it.  

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1 hour ago, Gluten-free me said:

Yes, as much as they ever will.  I no longer need to use a walker to remain upright; however, I still have neuropathy in my hands and feet and poor balance.  My neurologist says I won’t ever regain full function as I have too much damage from years of being undiagnosed.  He feels I have had it my entire life, but I wasn’t diagnosed until I was 60.  I’ve had digestive issues since I was an infant, but in my late 20s I quit complaining about them to doctors as no one could ever find a cause.  I just learned what didn’t make me feel well and didn’t eat it.  Unknowingly, I was consuming very little gluten, which in hindsight probably led to the difficulty in diagnosing me, but also indicates how extremely sensitive I am to it.  

Wow - it just blows my mind to think this is something we’ve all had struggles with since childhood and never knew.  I remember being slightly anxious as a child and was a nail biter.  Was told it was a bad habit.  I have learned it is partly due to gluten.  When I eat large quantities of it, I feel the urge to pick at my nails.  Being so thin that people thought I never ate, and I ate ALOT of food.  Was probably malabsorption all along.  I have low vitamin D, magnesium, potassium, and low white cell counts.  My brother was also very thin, shorter in height until adulthood and was and still is a nail biter.  It just makes me wonder if this is truly my issue or if it is just hormones.  I do know estrogen dominance is also common in my family.  I had just turned 40 when symptoms actually became more pronounced.  Thank you for your information.  This all really helps me and makes me feel less alone.  Yes, my brother is a bad celiac, but I feel he still eats a standard American diet by substituting processed foods with just gluten free ones.  I want to regain my health as much as possible. 

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I follow a Paleo diet with Keto Macros, works great for energy fitbit clocks me 20miles average a day. I also have issues with animal fats and meats. I had to avoid all but eggs for years then I started taking Pancrease and digestive enzymes to break them down and can enjoy a few oz in the morning now. 
I make most of my bread, cookies, etc all low carb and free of gluten, grain, dairy,  sugar, and starches. Much healthier then the store bought carb laden starch bombs. (any carbs or sugars will spike my glucose and flare my Ulcerative Colitis)

I also like you grew up skinny, but the in my late teens early 20s got really fat and slept most the days, I dropped drastically down to 140 from over 200 in a few months when we thought I was dying before diagnosis. I also had gluten ataxia near the end there with my immune system attacking my brain and nervous system. I lost the ability to do many things and for a few years could not detect much pain, hot, or cold in my hands. Long story with various mental issues I was having but scary as hell. Oh and when I went gluten free dropped more to 127-130lbs I guess from inflammation. 

Nowadays I am trying to body build with a higher protein keto diet (mostly pea protein, pumpkin protein, egg whites) still limited meat intake, and tons of healthy fats from avocados, nut butters, seed butters, seed meals, and baked goods made with nut bases. Actually got my body checked today 142lbs 7.8% body fat..but high water weight due to post workout the day before. Up 12lbs in the past 6 months all muscle.

If you need low impact to start off, look at a stationary pedal bike with magnetic resistance like form sunny health to put in front of the couch. Pedal on it a few hours a day while watching something, or get a Cubii for under the desk to pedal on while doing computer work. Mix in resistance bands while doing these and yoga. 

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1 hour ago, Ennis_TX said:

I follow a Paleo diet with Keto Macros, works great for energy fitbit clocks me 20miles average a day. I also have issues with animal fats and meats. I had to avoid all but eggs for years then I started taking Pancrease and digestive enzymes to break them down and can enjoy a few oz in the morning now. 
I make most of my bread, cookies, etc all low carb and free of gluten, grain, dairy,  sugar, and starches. Much healthier then the store bought carb laden starch bombs. (any carbs or sugars will spike my glucose and flare my Ulcerative Colitis)

I also like you grew up skinny, but the in my late teens early 20s got really fat and slept most the days, I dropped drastically down to 140 from over 200 in a few months when we thought I was dying before diagnosis. I also had gluten ataxia near the end there with my immune system attacking my brain and nervous system. I lost the ability to do many things and for a few years could not detect much pain, hot, or cold in my hands. Long story with various mental issues I was having but scary as hell. Oh and when I went gluten free dropped more to 127-130lbs I guess from inflammation. 

Nowadays I am trying to body build with a higher protein keto diet (mostly pea protein, pumpkin protein, egg whites) still limited meat intake, and tons of healthy fats from avocados, nut butters, seed butters, seed meals, and baked goods made with nut bases. Actually got my body checked today 142lbs 7.8% body fat..but high water weight due to post workout the day before. Up 12lbs in the past 6 months all muscle.

If you need low impact to start off, look at a stationary pedal bike with magnetic resistance like form sunny health to put in front of the couch. Pedal on it a few hours a day while watching something, or get a Cubii for under the desk to pedal on while doing computer work. Mix in resistance bands while doing these and yoga. 

I am sorry you had such a rough time, but it is reassuring to hear that things can get better and balance out again.  I am almost 5’9” and when I graduated high school I was lucky to be 110 pounds.  I remember going to my family doc and begged for something to gain weight. Back then, I was made fun of for being so small.  I ate anything and everything and no gains. My doc said I had a high metabolism, and back then gluten sensitivity wasn’t even a thing.  

I did try Keto back in 2013, but looking back I think I dis it wrong. I had an Elisa food panel test done and I was sensitive to over 40 foods.  I was told it was one of the worst they’ve seen.  Being me, I avoided every one of them, leaving me not much to eat.  I am sure I was very high protein, high fat, very low carb.  My thyroid crashed shortly after.  I was only getting in maybe 15-25 NWT carbs per day.  It’s like my body could never run on fat and feel good.  I lost a ton of weight doing it!  But once more carbs cycled back in, I expanded by 50-60 pounds in a very short period of time.  Like 4 months.  And I have been steady at this heavier weight for about 5 years.  

I am trying to increase my fat intake without eating much animal products.  I do have Digestzyme V - maybe I will try taking them with protein heavy meals.  

It is overwhelming to think I spent 1/2 my life eating anything I wanted and am now so restricted.   I tried adding in lots of beans like lentils, garbanzo, Lima, butter beans, etc, but don’t do well on those either.  I have a friend that is vegan and she said it takes time for the gut to be able to break them down.  I am scared to push it for fear of causing more issues.  Thanks for the feedback.  I am getting so much information from everyone.  Like I said, it helps to know I am not alone.  

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12 minutes ago, CoachAng said:

I am sorry you had such a rough time, but it is reassuring to hear that things can get better and balance out again.  I am almost 5’9” and when I graduated high school I was lucky to be 110 pounds.  I remember going to my family doc and begged for something to gain weight. Back then, I was made fun of for being so small.  I ate anything and everything and no gains. My doc said I had a high metabolism, and back then gluten sensitivity wasn’t even a thing.  

I did try Keto back in 2013, but looking back I think I dis it wrong. I had an Elisa food panel test done and I was sensitive to over 40 foods.  I was told it was one of the worst they’ve seen.  Being me, I avoided every one of them, leaving me not much to eat.  I am sure I was very high protein, high fat, very low carb.  My thyroid crashed shortly after.  I was only getting in maybe 15-25 NWT carbs per day.  It’s like my body could never run on fat and feel good.  I lost a ton of weight doing it!  But once more carbs cycled back in, I expanded by 50-60 pounds in a very short period of time.  Like 4 months.  And I have been steady at this heavier weight for about 5 years.  

I am trying to increase my fat intake without eating much animal products.  I do have Digestzyme V - maybe I will try taking them with protein heavy meals.  

It is overwhelming to think I spent 1/2 my life eating anything I wanted and am now so restricted.   I tried adding in lots of beans like lentils, garbanzo, Lima, butter beans, etc, but don’t do well on those either.  I have a friend that is vegan and she said it takes time for the gut to be able to break them down.  I am scared to push it for fear of causing more issues.  Thanks for the feedback.  I am getting so much information from everyone.  Like I said, it helps to know I am not alone.  

There is a few weeks period for most people to get over the "keto flu" and transition. Bit hard getting enough fats in, I started tons of nut kinds of butter and cooking with coconut oil alot. Ketogenic Girl has some good advice on diet, and Ketosummit has tones of recipes. 
The tricky thing about enzymes is you have to take them to your diet ratio, as it takes certain amounts of each enzyme to break down each macro. I did a rough covering here.
https://www.celiac.com/forums/topic/119919-digestive-enzymes/

 

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20 minutes ago, Ennis_TX said:

There is a few weeks period for most people to get over the "keto flu" and transition. Bit hard getting enough fats in, I started tons of nut kinds of butter and cooking with coconut oil alot. Ketogenic Girl has some good advice on diet, and Ketosummit has tones of recipes. 
The tricky thing about enzymes is you have to take them to your diet ratio, as it takes certain amounts of each enzyme to break down each macro. I did a rough covering here.
https://www.celiac.com/forums/topic/119919-digestive-enzymes/

 

Thank you!  I am going to go read the post you provided.  😊

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On 5/19/2019 at 7:14 PM, CoachAng said:

Thank you, thank you, thank you!  I do have the energy to jog again.  It’s hard now that I am so much heavier.  If I start trying again, does this just add more inflammation or would it actually be good for my body?  I don’t want to cause more issues.  I will definitely look into the autoimmune paleo diet.  Thanks so much!

Based on my personal experience, start off with walking and the work your way up to jogging.  Consider swimming or water aerobics if you have access to a pool.  Moderate Exercise helps with inflammation.  

https://health.ucsd.edu/news/releases/Pages/2017-01-12-exercise-can-act-as-anti-inflammatory.aspx

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