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Anyone Here Suffer From Inflammation?


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32 replies to this topic

#16 beebs

 
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Posted 24 November 2011 - 03:06 AM

I used to hope the same thing , beebs, and in the meantime took every DMARD that came my way, hoping one day the gluten free diet woud kick im and knock this stuff on its a$$, Well, it actuallly, finally, took Humira to knock my CRP and SED rate bak to where they belonged. It was really hard to tell where all that dramatic inflammation was coming from, but in the end it turned out not to be the gut, but the joints, As soon as the joints calmed down, so did the inflammation, so I guess I had takencare of the gut already. Not to say that when I am off Humira (have to go off it to fight infections) my inflammatory flares of psoriasis and arthritis have not been so bad (touching wood while she says this :P )


When I was preg every single symptom went away - I felt for awhile, like it may have been all in my head. But not so, as soon as the baby came out it all came back with a vengance, I guess that is why I don't blame absolutely everything on gluten - for people like us it could really be anything :P Stupid autoimmune diseases! I have just been told that I could possibly have psoriatic arthritis, at first it might have been sjogren's, then lupus and now psoriatic - ho hum. Its like a really long and boring guessing game! haha!
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#17 sandsurfgirl

 
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Posted 24 November 2011 - 08:06 AM

Just wanted to thank evryone for the replies. I did get a private message concerning a book. I WILL PASS THAT BOOK NAME ON INCASE SOMEONE ELSE COULD BENEFIT FROM READING IT AS WELL. (sorry for the caps- computer)

"Healing Back Pain the MInd Body Connection" Dr. John Sarno


It was me that sent that. :) I had neck pain for years and nothing worked to make it go away. I read his book and did the things he said to do. The neck pain went away and never returned.

I was having pain in my chest muscles the past week or so. I reread parts of the book and did what he said and the pain is gone.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#18 GottaSki

 
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Posted 24 November 2011 - 08:52 AM

Never had an abnormal test for inflammation...yet I have lost three pant sizes with only 8-10 pounds of weight loss since starting elimination diet three months ago. I have shrunk everywhere...it is now completely obvious to all that I had inflammation in every part of my body.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#19 SoyBoy

 
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Posted 24 November 2011 - 01:00 PM

Never had an abnormal test for inflammation...yet I have lost three pant sizes with only 8-10 pounds of weight loss since starting elimination diet three months ago. I have shrunk everywhere...it is now completely obvious to all that I had inflammation in every part of my body.


Interesting. I had a similar experience. I had multiple signs (visible to my doctor) of inflammation, yet my numbers were "the best #s I have ever seen" according to my Dr. She was perplexed, but did not investigate further.
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#20 elfie

 
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Posted 24 November 2011 - 04:19 PM

Sandsurfgirl, thanks so much for the mention of the name of that book so that it got out here for us to see. Most of my peripheral neuropathy has gone away for the most part just from going gluten-free. I still have weather and stress related flareups, but not so much anymore.

I do have either an old back injury or a bone spur that sometimes knocks me out of commission. The doctor told me it was diaphragm muscle, but previous chiropractic xray showed the bone spur. Improper lifting is what sets it off most of the time---sometimes either forget or don't have option.

I'm not in any financial position to go through another round of doctor testing that always comes back inconclusive or within normal range. Not in any position to buy the book either. You don't happen to know if it's one that libraries might have? It's doubtful my local library would have it (small town) but maybe city libraries? Yes, I could let my fingers do the walking, and I will if there's a possibility, but the libraries I'd be checking are out of my phone area.

Thanks for any information you can give, even if it's that you don't know.
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#21 AVR1962

 
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Posted 24 November 2011 - 11:07 PM

Hmm- I'd ask for a referral to a rheumatologist if I were you, celiac disease goes hand in hand with the connective tissue autoimmune family, Lupus, Sjogren's etc etc. Not saying that is what it is -it sounds like your joints are affected, so not just like you have pulled something iywkim!

Thanks Beebs, ugh I sometimes wonder if all of this stuff is ever going to calm down!
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#22 AVR1962

 
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Posted 24 November 2011 - 11:16 PM

Yes, the foot can be related. I had sciatica caused by an injury to my ankle. Can you specify exactly where the pain runs? Mine was all the way down the posterior exterior part of the leg, around the outside of the knee and down in to the outside of the foot, right to the middle toes.

Caroline, I have been dealing with sciatic nerve issues for awhile I havae had it make my feet fall asleep but this is the first with the type of pain I am having in the left foot. While, at first I thought it was relate, I am not so sure anymore. The sciatic, for me, does no even appear to me as anything until it hits me at the back of the knee. Then it either wraps or radites around the knee area making my knee achy and feels like my circulation is cut off. Then I will have waves of pain down the back of claf and cool feelings on the left side of calf.

Since I can actually sit without feeling the nerve now but foot is no better I have a feeling something else is giing my foot issues. It actually feels like the toes are coming coming apart from the ball of the foot. It feesl like there is swelling on the bottom of my foot at the point where the foot hinges to the toes but there is not. It's almost like there is too much weight on the foot, yet I am not an ove weight person. Resting it makes no difference, heat is the only thing that seems to improve the situation.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#23 mushroom

 
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Posted 24 November 2011 - 11:23 PM

Since I can actually sit without feeling the nerve now but foot is no better I have a feeling something else is giing my foot issues. It actually feels like the toes are coming coming apart from the ball of the foot. It feesl like there is swelling on the bottom of my foot at the point where the foot hinges to the toes but there is not. It's almost like there is too much weight on the foot, yet I am not an ove weight person. Resting it makes no difference, heat is the only thing that seems to improve the situation.


I really hate to say this, but it sounds like the way my foot feels when my arhtiritis flares. :(
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#24 CR5442

 
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Posted 24 November 2011 - 11:55 PM

Caroline, I have been dealing with sciatic nerve issues for awhile I havae had it make my feet fall asleep but this is the first with the type of pain I am having in the left foot. While, at first I thought it was relate, I am not so sure anymore. The sciatic, for me, does no even appear to me as anything until it hits me at the back of the knee. Then it either wraps or radites around the knee area making my knee achy and feels like my circulation is cut off. Then I will have waves of pain down the back of claf and cool feelings on the left side of calf.

Since I can actually sit without feeling the nerve now but foot is no better I have a feeling something else is giing my foot issues. It actually feels like the toes are coming coming apart from the ball of the foot. It feesl like there is swelling on the bottom of my foot at the point where the foot hinges to the toes but there is not. It's almost like there is too much weight on the foot, yet I am not an ove weight person. Resting it makes no difference, heat is the only thing that seems to improve the situation.

Hi AVR1962, my goodness you could be describing the pain I had almost to the letter. I was struggling to remember the exact path of it but the knee wrapping and the feeling like your toes were going to fall off (I was skiing with the worst of it and honestly I thought I have severe frost bite!), the ball of the foot felt like it was protruding out in to the bottom of my boot. There are a number of exercises I was given to stretch the nerve out. The most useful of which was to put a phone directory (here they used to be thick!) on the floor and put your toes (in shoes) on the side of the directory and then relax your heels back to the ground. That should help stretch out the bottom half of your leg.

Then the other one, for the ankle, toe bit I can't describe really without actually doing it! It involved sitting with your bad leg up on a sofa stretched out, other leg on the floor. point your toes as far as you can on stretched out leg and then inwards (pigeon toed we call it), lean forward until you are as far forward as possible without causing pain and then bring your head to your chest. if you are doing it properly you should feel your whole sciatic nerve from your back to your ankle/toes. If it hurts too much then sit up a bit straighter and try nodding again! Do this very slowly! It took a while for this to work for me, a few months but eventually the pain went away when doing things like running. However as I haven't been skiing I can't tell if it has been a complete success.
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#25 AVR1962

 
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Posted 25 November 2011 - 11:26 AM

I really hate to say this, but it sounds like the way my foot feels when my arhtiritis flares. :(

Really? Oh man! Arthritis runs in the family too. Guess I will have to address with doc. Thanks for the reply.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#26 AVR1962

 
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Posted 25 November 2011 - 11:29 AM

Hi AVR1962, my goodness you could be describing the pain I had almost to the letter. I was struggling to remember the exact path of it but the knee wrapping and the feeling like your toes were going to fall off (I was skiing with the worst of it and honestly I thought I have severe frost bite!), the ball of the foot felt like it was protruding out in to the bottom of my boot. There are a number of exercises I was given to stretch the nerve out. The most useful of which was to put a phone directory (here they used to be thick!) on the floor and put your toes (in shoes) on the side of the directory and then relax your heels back to the ground. That should help stretch out the bottom half of your leg.

Then the other one, for the ankle, toe bit I can't describe really without actually doing it! It involved sitting with your bad leg up on a sofa stretched out, other leg on the floor. point your toes as far as you can on stretched out leg and then inwards (pigeon toed we call it), lean forward until you are as far forward as possible without causing pain and then bring your head to your chest. if you are doing it properly you should feel your whole sciatic nerve from your back to your ankle/toes. If it hurts too much then sit up a bit straighter and try nodding again! Do this very slowly! It took a while for this to work for me, a few months but eventually the pain went away when doing things like running. However as I haven't been skiing I can't tell if it has been a complete success.

Caroline, I will add these stretches to my routine and see if they make a difference. Thank you taking the time to describe these.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#27 AVR1962

 
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Posted 11 December 2011 - 11:05 PM

I really hate to say this, but it sounds like the way my foot feels when my arhtiritis flares. :(

I'm bringing an old post back to life. Mushroom, can you describe to me what your foot feel like when your arthritis acts up and does it stay with you day and night for months or can ou get relief?

This pain in my foot is not going away. My back is good, no more stiffness. My back feels in place and despiet that my sciatic nerve is still giving me issues. It is now pulsing behind my knee, hurts to sit. Docs gave me pain killers which I didn't want to take but I tried and had a reaction to the pain killer. Next appt with doc he is supposed to do a ciomplete back work-up thinking the problem in my oot is the sciatic nerve. The suggested exercises did not work.

I cannot continue to do this, am going to try and get into doc today.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#28 mushroom

 
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Posted 11 December 2011 - 11:50 PM

I'm bringing an old post back to life. Mushroom, can you describe to me what your foot feel like when your arthritis acts up and does it stay with you day and night for months or can ou get relief?



My foot problems started with the feeling that there was a big round stone in the front of the ball of my foot between the ball and the toes, and it was incredibly painful to walk on. Then I began having swelling in my toes (and my index fingers and thumbs), following by shooting, elecrical-type pains into the toes and fingers. No relief. Stiffness in the mornings, two hours to get showered and dressed. I was put on DMARDS (methotrexate, Plaquenil, sulfasalazine, diclofenac, leflunomide. Some of these worked but darned near killed me in the process. I am now on Humira (TNF-inhibitor) which has its own little joys of suppressing the body's ability to fight infection so you have to go off it when you have an infection. I am lucky that I can tolerate a while off it (supposed to inject it every two weeks), but was off it for four months last US summer because of various infections, so now my psoriasis has flared again. Thank goodness, touching wood, no shooting pains or lumps in balls of feet. :)

I have no idea if this bears any relationship to what you are going through - just my experience. I am RF negative, as are lots of people with psoriatic arthritis - how about that? Two autoimmune diseases wrapped into one :rolleyes:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#29 CR5442

 
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Posted 12 December 2011 - 12:54 AM

Hi AVR, really sorry that the excercises are not working. Have you had any physio? The other two things that may help are acupuncture (always a great one for pain that the doctors cannot resolve with drugs!) and ultrasound treatment. Can you get acupuncture through your german doctor's surgery? I know they are very in to alternative therapies there.
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#30 AVR1962

 
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Posted 12 December 2011 - 03:13 AM

Hi AVR, really sorry that the excercises are not working. Have you had any physio? The other two things that may help are acupuncture (always a great one for pain that the doctors cannot resolve with drugs!) and ultrasound treatment. Can you get acupuncture through your german doctor's surgery? I know they are very in to alternative therapies there.

Caroline, I am seen at a military base hospital for most opf my care, sometimes they send me to a German doc. I was able to get an appt for Friday so I am really hoping that we can get something going on this. Acupucture might be work a try. I did some research on herbs last night and will try them as well. Today I was even thinking maybe I just need to try and move more. I have been laying back on exercise partly due to weather but my foot has been rather painful for quite some time. I did 30 minutes on my treadmill and it didn't kill me, it felt like it almost numbed my foot. Then I soaked it for a good 10+ minutes in hot water. Some where, some how there has to be a way to relieve this and find out what is going on with this foot.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.




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