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Severe Migratory Joint Pain


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6 replies to this topic

#1 SabrinaESQ

 
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Posted 16 August 2009 - 06:31 PM

I was diagnosed about 1 1/2 months ago. It was absolutely wonderful news after searching for 2 1/2 years for the source of my joint pain. I started with a severe flu, which lasted over 4 weeks, and then began having migratory joint pain off and on. I went to tons of doctors who all basically discounted my issues. But the pain became constant and was severe, so much so that I began having to take narcotic pain medications just to get through the day. Finally, the fifth rheumatologist I went to thought to test for Celiac - and i came up positive. The following endoscopy confirmed - I had a diagnosis. Well, I started my diet RIGHT away, willing to do anything to stop the pain. But I am 1 1/2 months into the diet and my pain is pretty much as bad as ever. I may be experiencing SOME relief, but I think that might be at least partially wishful thinking.

Is there anyone else out there who has had this problem? How long is it going to take for me to feel better?
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#2 nu_to_no_glu

 
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Posted 16 August 2009 - 06:53 PM

I am not an expert in any of this, as I am not diagnosed or gluten free, yet...but, I wanted to let you know that I can relate entirely! I get the worst joint and bone pain that sometimes I can barely walk. It usually happens in the evening and I have to take narcotics as well for relief and to be able to sleep. Otherwise, it keeps me up it's so bad. All of my bloodwork came back fine and the dr. wasn't too convinced it was a problem, but I know what I'm feeling. I like to think now that I'm almost definite that I have celiac that my body is just struggling to fight. I hope it gets better quickly. Someone might have more insight into how long after gluten-free for some symptoms to go away. I've read via google that it can take several months to a year for your body to fully heal, but I'm sure it's different for everyone. Again, I don't know much! Best of luck...glad to hear you are on the road to recovery, wish you weren't still hurting!
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#3 ravenwoodglass

 
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Posted 17 August 2009 - 02:34 AM

It took some time for my joint pain to improve. That said have you checked all your meds? If any of your scripts or supplements contain gluten that will keep the antibodies active. Have you been CC'd frequently as often happens in the early days of the diet? That can set us back a bit. Are you eating mostly whole unprocessed foods? That is one of the surest ways to be safe in the beginning while we ferret out which companies are the safest for us. Not all companies tell us when there is a cross contamination risk and gluten can hide in 'natural flavors' usually in the form of barley.
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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)

#4 Fiddle-Faddle

 
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Posted 17 August 2009 - 03:55 PM

The celiacs I know who suffered from joint pain all have had to eliminate dairy from their diet as well.

One of them told me that there was an article in "Rheumatoid Arthritis Today" magazine a few years ago which mentioned the combination of wheat and dairy as being particularly common RA triggers.
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#5 Fiddle-Faddle

 
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Posted 20 August 2009 - 03:25 AM

If totally eliminating gluten and dairy (and it MUST be 100%--unfortunately, it's an all-or-nothing situation) does not ease your joint pain, then you might have to look into other possibilities, such as Lyme disease. According to all the Lyme sites, the first symptom of Lyme disease is severe pain in the large joints.

But Lyme is tricky to diagnose, and some doctors simply don't believe in it.

It is possible to have celiac disease AND Lyme.
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#6 filleykid

 
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Posted 22 August 2009 - 08:09 PM

I was diagnosed about 1 1/2 months ago. It was absolutely wonderful news after searching for 2 1/2 years for the source of my joint pain. I started with a severe flu, which lasted over 4 weeks, and then began having migratory joint pain off and on. I went to tons of doctors who all basically discounted my issues. But the pain became constant and was severe, so much so that I began having to take narcotic pain medications just to get through the day. Finally, the fifth rheumatologist I went to thought to test for Celiac - and i came up positive. The following endoscopy confirmed - I had a diagnosis. Well, I started my diet RIGHT away, willing to do anything to stop the pain. But I am 1 1/2 months into the diet and my pain is pretty much as bad as ever. I may be experiencing SOME relief, but I think that might be at least partially wishful thinking.

Is there anyone else out there who has had this problem? How long is it going to take for me to feel better?


I can relate to you entirely. I was also diagnosed about 1 1/2 months ago at the ripe old age of 27. I have battled with joint pain since for about 5 years mainly in my feet and fingers. My doctors diagnosed it as osteoarthritis. And I was given mobic and ultram to deal with the pain. Since I went on the diet my arthritus has improved. I am currently not taking any of the medications right now on a constant basis. Before being diagnosed, I was on a daily dosage of mobic and taking a lot of tramado(ultram) to get through the day. Along with you, I am hoping that it will continue to get better as the months go by. Right now I'm not sure if the arthritis is related to have celiac or not. My family has had a history of arthritis and my mother was diagnosed with it when she was 30 and she tested negative for celiac. All I can say is to hope for the best and continue with the diet and be aware of cross-contamination (It seems that cross-contamination aggravates my joint pain) and I'm sure you will notice a difference.
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#7 moppin

 
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Posted 24 August 2009 - 10:44 AM

I was Dx d and gluten free for about 2 yrs when I became aware of new pain. The celiac disease pain I had was mostly gone - but would be back on me with a vengence if i was CC d. I had taken meds for pain for years when they hadn't known what was wrong. Had some troble getting off oxycontin. When I was DX finally, I still took tramodol for pain. After awhile I only took it when I got glutenated. But I began having pain in my shoulders, hands, feet. It got bad enough that I needed help getting dressed and doing the most ordinary things was daunting. I was up to taking the tramadol 3xs a day and the pain was getting worse and more generalized. My neck, my back etc. After studying joint pain, peripheral nuropathy and anything I could find, I decided to try a few things. Firstly I had to get off the tramadol. The constipation was awful. I was also taking otc meds for pain. There is a condition of rebound pain caused by this. Also I read that if you take narcotics for a long time same thing. The nerve switches get stuck in the on position. For more than a month now I have been tramadol free. The first week to 10 days were hard. I hurt so bad! It used to take me several hours every morning just to get up and around. Now I'm up at 5 and ready to do yoga at 7:30. Excercise helps even though it was so hard to start. The pain is almost gone. I think I might have frozen shoulder syndrome but excercise seems to be the best thing for that. I was away and went back home to get things. My grown son comented that I was getting things out of cabinets, tying an apron behind my back, climbing up on chairs to rach things. I started taking extra B12 but not sure that is helping. Its thougth to help nuropathy. Maybe. I have also read that perhaps people with celiac disease absorb B12 in the methylcobalamin rather than the cyanocobalamin form. Most supplements I've found have the 2nd form. I hope this helps. Try getting away from the meds. Stretching gets easier as you continue to do it. Hydrotherepy - a hot tub or moving in a swimming pool has helped too. Good luck!
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