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Arthritis/ra


GFreeMO

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GFreeMO Proficient

Hello,

Has anyone else been diagnosed with arthritis or RA due to years of having undiagnosed celiac disease? I have been told that I have RA due to 20 years of undiagnosed celiac that caused chronic wide spread inflammation. I have been gluten free for a while now and my gastro symptoms are gone but the joint pain has not resolved. I was told that the RA may improve with a gluten free diet but so far no luck. Anyone else?

:)


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ravenwoodglass Mentor

My arthritis is in total remission. It did take quite a long time, about 6 months or so and I had to be very strict. I would have flares that I thought were gluten related for a couple of years but then I realized I was reactiong to soy so I also had to give up soy for complete relief. Oddly enough when I get glutened my arthritis doesn't flare much but if I get soyed I am in pain big time. The joint deformity in my hands didn't go away but at least I have full use of them now.

txplowgirl Enthusiast

My RA eased up a lot when I went gluten free but it wasn't untill I took out dairy, soy and nightshades also that I started getting real relief. It took me almost a year to feel better but that was because I was being stubborn and not wanting to take out the other foods.

I hope you get to feeling better.

sb2178 Enthusiast

I had joint issues, not to the severity of RA although my pcp last year did a few blood tests looking for it. And, apparently someone the year before had written arthritis in there somewhere as my health insurance company sent me a letter about an arthritis nurse case manage available to members. No formal diagnosis, just take NSAIDs prn.

It took probably four months for the hips to clear up (minor to the point of having gotten used to it) but only about two for hands/wrists and feet (which were mostly fine but not always).

mushroom Proficient

I seem to be the only poster on here whose arthritis has not improved on gluten free. I have psoriatic arthritis, and recently did a trial of going without my Humira injections which I have been taking as long as I have been gluten free. Everything came flaring back, unfortunately :(

chasbari Apprentice

I had severe RA that responded radically to gluten-free, grain free, nightshade free, soy free. Three years ago I could barely get out of a chair. I just finished reassembly of an older Nautilus Duo Squat machine today. Could not have even thought about thinking about doing that back then. Many of my autoimmune issues have responded as well. Strict on all the dietary things. I tried potatoes several months in only to be crippled for about a week after eating some. Well worth the sacrifice.. but I do miss potatoes.

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    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
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