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Inflammatory Issues/arthritis/tendonitis/bursitis?


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#1 mimommy

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Posted 21 February 2009 - 11:51 AM

Hello everyone. First off--thank you ALL for being (bar none) the BEST RESOURCE FOR CELIAC AWARENESS out there!!
Now, my question is this--who among you has inflammatory issues? I ask for my own self, not my celiac child. I have read several other posts on other threads about these problems, but would like specific stories if you could share them. I am struggling with pain constantly. I have arthritis in my lumbar spine, mild degenerstion in cervical spine, mild wear on my knees, a chronic sprain in my ankle (fell off a curb), pain in shoulder and elbow, painful bursts of numbness in leg/hip/neck/arm that take my breath away, and horrible debilitating pain in hip/leg/knees. I also get dry mouth, dry cracking skin, weird little breakouts around temples and ears, brittle hair, and an itch below my left ring finger that I have been digging at for over twenty years. I was recently tested by ortho. for RA--negative. Had MRI, showed very little. I was told years ago that I have ITBS (iliotibial band syndrome) which does explain some of this, but not all. I also have scintillating scotoma (an eye condition) which seems to coincide with the numbness. Oh yes, and I have two part time jobs that both require me to be in top physical shape--lifting up to 60 or so lbs., being on knees for extended periods, on feet for more than 8 hours at a time, etc.
The reason I am asking here, is because it seems that so many of you have inflammatory issues and nerve/neurological issues also. Please share your expereince with me. If you like, PM me (I know how private these things can be.) I am ready to try gluten free for myself, as I am hoping it will at the very least help avoid cc for my daughter, if not give me some relief.
I have not been tested for celiac yet...
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#2 ravenwoodglass

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Posted 22 February 2009 - 06:10 AM

When you said the MRI showed little what was it that showed? It wasn't by any chance what they call UBO's was it? Those are diagnostic of celiac in some other countries but often thought to be nothing here.
Reading your description of your pain is like reading my own prediagnosis. I can't say the same will happen for you but I have been pain and med free now since diagnosis. My arthritis is in pretty much total remission, although of course the joint damage is still there but they don't hurt anymore.
Do be sure if you want the celiac panel done that you keep eating gluten until all the testing you want to have done is done. Then give the diet a good strict try.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 mimommy

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Posted 22 February 2009 - 08:29 AM

Hi, and thank you so much for responding. I have been trying to get medical help for my pain for almost twenty years and I'm tired--tired of hurting, tired of being offered dangerous meds without knowing what's causing it, and tired of feeling decades older than I am.
You mentioned UBO'S--what is this exactly? It was not mentioned on the MRI report, then again, nothing much was. The only findings were the lumbar and cervical issues I mentioned. My personal experience is that a test is only as good as the professional interpreting it, and I am not at all sure mine was handled well. I went to ortho. complaining of knee, ankle and hip pain and he ordered the MRI on my back to rule out nerve damage and MS. I spent a great deal of time educating myself about MRI images and comparing my own to others I saw. My gut feeling is that it was misread.
I discussed my other symptoms with the ortho and he kind of gave me a funny look when I told him I have nausea, recurring 'D', vertigo, dizziness, visual disturbances, headaches, etc. He referred me to a neurologist, but I haven't decided if I should go.
He offered me something in the morphine family, which I refused. He gave me a scrip for celebrux, which I won't take until I literally can't walk anymore. (Ortho says I'm stubborn.) The only meds. I take are Naproxen for the inflammation--which takes a little 'heat' out on the first dose, reduces inflammation on the second dose, but doesn't relieve all of the pain and leaves me with an overall weird feeling and bad indigestion. Ibuprofen does nothing for it at all, but does help with the monthlies.
I am not sure if I really need to be tested for celiac. I have been debating this question for months now. If it simply helps avoid cc'ing my kid, what's the harm of just making this a completely gluten-free household. Testing can mean having a disease that may actually lessen my ability to get proper health coverage or being told I don't have it, leaving me feeling even more invalidated by the medical community than I already do (issues, issues). Then again, I have good health care at present and it wouldn't cost much to just go to my internist and get the panel done. My husband thinks that it isn't necessary, but that it can help other celiacs in the long run by adding yet one more piece to the puzzle for researchers to study.
All I know is I'm hurting. My mother has to take embril shots for her pain. My little girl is having pain already--which bothers me deeply. I know what life is like through the lens of inflammation and wouldn't wish it on her for anything. I am a surprisingly active 40 year old--surprising in that I can even move with so much pain. I feel like I'm 60, and I'm scared of what I might actually feel like at that age if I already have trouble like this. I wake up from nightmares where I'm begging for help, and even wake up crying sometimes it hurts so bad. It hurts to walk, sit , kneel. Laying down on my left hip takes my breath away the pain is so bad.
Sorry for the long winded history. Pain is a lonely companion.
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#4 ravenwoodglass

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Posted 22 February 2009 - 10:03 AM

Pain is a lonely companion.


It sure is. I am not ashamed to admit that brought tears to my eyes. The pain I dealt with daily and the fears produced in my children by their watching the pain that eventually was too great to hide did a lot of damage to them. To say nothing of what it did to my life. Many of us here live with that companion far too long.
It will help makes things much easier on the household to make it gluten free. I have a feeling you might also get your life back. It is your choice if you want to make your life gluten free and whether and how much testing you choose to have done. With a celiac child you might also find that your doctor gives you a 'diagnosis' based on your dietary response if it is good.
I always hate to say that I hope it is celiac but I do so hope the diet helps you. You may find that you are VERY sensitive to gluten after you stop consuming. Some with neuro effects also react to gluten grain distilled vinegar and alcohols, not all but enough to make it a good idea to avoid them until you get some relief and then add them back in if desired and watch for a reaction.
I hope you are feeling better soon. One thing that you also should do is to take a sublingual B12 supplement and also magnesium and vit D3. Those should also help speed the healing but make sure they are gluten and other allergen free.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)


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