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Joint Pain With Many Other Symptoms


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#1 tbritt

 
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Posted 15 September 2010 - 06:44 PM

Hi all. I posted here about two weeks ago.

I have been in EXTREME pain in my neck and shoulder for six months along with nausea, general ickiness, gas and tiredness. Strangely, I took antibiotics and I felt better for a time, but upon stopping the antibiotics, the pain returned. I did a second round of antibiotics and the pain returned again. I apparently had mononucleosis this year some time, too. (Which could have triggered this all.) Physical therapy didn't help. Months of being on anti-inflammatory drugs didn't help. Antibiotics seemed to help... but only while I was taking them. And I KNOW how bad antibiotics are for you, so I didn't want to be on them except they seemed to help.

I was desperate to find an answer why nothing was working for this pain.

I have always been sickly.
Age 7 - Anemic
Age 13 - Dizzy spells
Age 16 - Hypoglycemia
Age 17 - Eczema/Psoriasis/rashes/hives/etc
Age 18 - Ulcers/Reflux
Age 21 - Epilepsy
(You get the picture. Depression, etc.)

About four weeks ago, I had a dream about changing my diet. I started to read about food allergies and for some reason decided I would try going gluten free. That was three weeks ago.

It has been the only thing that has helped. I feel better than I have in six months. It no longer feels like something is attacking my neck and shoulder. The swelling has gone down. I am feeling much better. The pain is manageable, not all the way better, but enough that I am VERY excited. I can sleep again at night. I was even able to go for a hike last weekend! I don't have gas anymore. I would have never guess that was related.

After less than a week on the diet, I got a blood test screening for elevated IgA. It came back normal. Should I go off the gluten free for a while and get proper testing or just forget about getting a diagnosis and leave the gluten out of my diet?

The doctor (a new rheumatologist I am seeing) diagnosed me as "gluten intolerant" and he seems to think that getting rid of gluten isn't a bad thing. He suggested I might go back on it and get the other tests if I wanted, or I could save a lot of time and energy by just going gluten free for a while and seeing if I'm better.

He had a theory that the antibiotics killed all the bacteria in my large intestine (which caused less irritation there) which caused the antibodies in my blood to be lowered while I was taking it. It's an interesting theory. Basically, he thinks the antibiotics were helping the malfunction that was going on in the intestine, thus causing less irritation in my joint while I was taking it. As I stopped the antibiotic, I got worse again. Maybe that's another reason the IgA was normal?

Thoughts, ideas, anything?
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#2 ravenwoodglass

 
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Posted 16 September 2010 - 03:37 AM

It is really up to you whether you want or need a formal diagnosis. It sounds like your rhuemy is a good one who has realized that gluten is a toxin for you. If you feel you need a celiac diagnosis then do go ahead and do a challenge but be forwarned your body may really not like the challenge and you may still have a false negative on the biopsy.
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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 srall

 
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Posted 16 September 2010 - 04:03 AM

I had chronic neck and shoulder pain that finally went away when I went gluten free. I always thought it was a muscle that was knotted up but now I realize it was arthritis/joint pain. I'm also self diagnosed, and the thought of getting a formal diagnosis sends me into a panic. My SIL is an allergist and she's very insistent that I get a formal diagnosis, but my mother's GI tells her that the best way to determine if you are intolerant to something is to do an elimination diet. (Mom is gluten free also) There are good arguments on both sides.

I take a probiotic everyday as part of my recovery. If I were you I'd expect to stay gluten free my entire life, unless you decide to do the formal testing. But just remember that even if you don't get diagnosed celiacs doesn't mean you should be on gluten. My brother had testing done several years ago, including a blood test that was negative, so his doctor and he took it as clearance to eat gluten. And years later he's still suffering.
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#4 srall

 
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Posted 16 September 2010 - 04:05 AM

Isn't it interesting how answers come to us in dreams? I find that very interesting.
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#5 tbritt

 
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Posted 16 September 2010 - 06:32 AM

I had chronic neck and shoulder pain that finally went away when I went gluten free. I always thought it was a muscle that was knotted up but now I realize it was arthritis/joint pain.


How long did it take to get 100 percent better? I feel I am around 85 percent better. It used to feel like something was attacking my body. Now it just feels like there is some tendon and muscle pain. (Before it had gotten to the nerve and was just unbearable.) I really thought I was dying. (And on the days I didn't think I was dying, I wished I was because the pain was so much I couldn't handle it.)

How long have you been gluten free? Have you found you've had to give up anything else?

I so badly want miss alcohol and chocolate but have been trying to be really good about not. I had some wine and some dark chocolate last week (both were supposed to be gluten free) but I wonder if they slowed my progress. I don't know if they had hidden gluten or if I have a problem with the chocolate or the wine. I might have to cry if I have to give up dairy, chocolate, and alcohol altogether. I haven't eliminated dairy yet.
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#6 srall

 
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Posted 16 September 2010 - 10:04 AM

How long did it take to get 100 percent better? I feel I am around 85 percent better. It used to feel like something was attacking my body. Now it just feels like there is some tendon and muscle pain. (Before it had gotten to the nerve and was just unbearable.) I really thought I was dying. (And on the days I didn't think I was dying, I wished I was because the pain was so much I couldn't handle it.)

How long have you been gluten free? Have you found you've had to give up anything else?

I so badly want miss alcohol and chocolate but have been trying to be really good about not. I had some wine and some dark chocolate last week (both were supposed to be gluten free) but I wonder if they slowed my progress. I don't know if they had hidden gluten or if I have a problem with the chocolate or the wine. I might have to cry if I have to give up dairy, chocolate, and alcohol altogether. I haven't eliminated dairy yet.


First off I've been gluten free since March/April of this year.

You know, I had so much weirdness going on during my detox that it might have been months before I realized that "Hey, my neck hasn't bothered me in awhile." I have to be honest here though, I still have joint pain. I don't know if it's my body healing or if some gluten is sneaking in. My neck is sort of bothering me today...don't know if I cranked it in yoga. I just don't know. I trust that as I continue to devote myself to this diet, that I'll continue to improve, but I think I have arthritis that I'll have to manage forever. Somedays are pain free, some days are awful. I KNOW FOR A FACT that gluten/dairy/soy in my diet contributed to chronic pain for years. The fact that I have pain free days is enough for me to keep going.

I think my back is slightly screwed up too as a result of adjusting my body to carry the pain. Does that make sense?

I have also dealt with pinched nerves as a result of this. The summer my daughter was 3 I was flat on my back on powerful pain killers. I couldn't even lift a grocery bag for 6 weeks. We were trying to have another baby and it was heartbreaking to put that on hold. (never had another baby...thank you gluten). I wish I could have figured this all out 10 years ago. I'm just thankful I'm not like my mom who realized at age 67 that she's gluten intolerant.

Keep going...feel better. I believe you will.
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