Celiac? Really?

Good Day everyone! So I've been suffering with joint pain and swelling since Nov 2014. I've been chronically anemic most of my life. My Rheumatologist was thinking RA or Lupus until one day I went for a routine followup with my Gastro for a routine colonoscopy. She asked about my symptoms and said she wanted to test me for Celiac. Not knowing much, I asked "why? I don't have any digestion problems." You can have atypical symptoms and it could be the source of your anemia and join pain. Sure enough, in June 2015, my lab work came back a high positive for Celiac and it was confirmed with a endoscopy.

I immediately took gluten out of my diet and started to feel somewhat better. Then life stress came my way and I went downhill again with constant fatigue, muscle and joint pain. I've just moved and I'm having to find new doctors and getting records transferred. Rheumatologist said we can't get a firm diagnosis of RA or Lupus until we treat Celiac. I've been so good with my diet and I'm having to take ibuprofen everyday to just take the edge of the pain.

This is very frustrating and I find my self very emotional daily. I know things can be worse but I've been a healthy person all my life. I know you guys understand better than my family since they haven't experienced these problems. I feel very alone sometimes. It feels like I'm just a complainer and I just need to eat well and take better care of myself but it's not that simple. Group hug :(..

Anyone experience similar diagnosis and symptoms?

7 Replies

  • Hi lisita,

    sorry to hear that you are having such a rough time of things currently. Just to let you know that you are not alone and that you will get a lot of support from this site. If you do get a confirmed diagnosis of RA or want to talk about it please feel free to call the helpline on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm


    Beverley (NRAS Helpline)

  • I had coeliac without complaining of significant digestive problems and it was also discovered because of chronicly low iron, folate and B12 in spite of a good diet. I was sure I had Chronic fatigue or ME or fibromyalgia or something. Took my GP about three years of malabsorption problems though before I got tested, though to be fair that was some years ago when they still thought coeliac was rare. Once on a strict gluten free diet I couldn't believe how well I felt. I also had joint problems since teenage years, though everything got better for me once the coeliac was diagnosed and treated, until I started the early signs of menopause and hormonal changes. Then autoimmune disease number 2 (ankylosing spondylitis) really kicked in big time. In hindsight I think I always had both, or at least had both since teenage. Getting the coeliac under control definitely stopped my body fighting itself so much, but eventually the AS came out as well. When I first saw a private rheumatologist they wondered if my inflammatory arthritis was what is known as coeliac or enteropathic arthritis, as apparently you can get a coeliac-linked arthritis, that calms right down on the gluten free diet. Unfortunately mine didn't and has now been shown to be ankylosing spondylitis.

    Keep working with your rheumatologist, but also pay a lot of attention to getting on a very strict gluten free diet - I got told that cheating as little as once a month keeps your body in a bad way, even if you don't feel it immediately. Use the NHS dieticians and get prescription GF foods, as that helps with compliance, and join Coeliac UK as they have a wonderful lot of information and a brilliant magazine with helpful hints and tips as well as regional meetings where you can get help and support with the gluten free diet. Going strict gluten free made a world of difference to me, and I'd never knowingly eat gluten again. It may take a while to get comfortable with a new way of eating, but its really worth it. I'm also sure that going gluten free (and stopping that autoimmune reaction) also put my body into better shape for holding off the worst of my inflammatory arthritis .

  • Thank you, your comments were very helpful. I think the UK is better about having GF products but I'm finding more and more products here in the USA. My Gastro even told me to look into GF lipsticks! Sounded strange and extreme to me but I think I'm going to look into that. Thanks again and best wishes to you.

  • hi.

    I don't know if this helps but I was diagnosed with RA in 2010. I managed to get nearly 2 years remission

    like you quite a healthy person. however I've just had a major flare up and pain is all back. I don't know why but it's been harder to be positive this time round. BUT I'm trying I put myself on a gluten, diary, potato, tomato free diet and I'm trying to feel ok.

    it's hard when we have to try so much harder just to be well. but it is so worth it.

    I hope you can get a balance back again and get some answers :-)

  • Hi Lista, I had illness for over 50 years. Found out it was coeliac in 1994. BUT at school had numerous times in bed for weeks at a time cos they called it rheumatism. I now have RA, OA, osteoporosis and hypothyroid. Point is I can't have any painkillers cos of the numerous allergies it has left me with. I am not in so much pain as others as a direct result of changing my diet. I also teach Tai chi despite not being able to climb stairs any more. Stick to it and look after your diet.

  • I was investigated for gluten sensitivity because of the low iron stores, frequent bowel action and colic - but I don't have a gluten sensitivity, "just" RA.

  • Dont be sad...you are not alone..Im such as you..sometimes worse than your situation..because I live in a country that there is nothing to eat as gluten free...and it is full of pains mostly for me..Im 37..I have son 14 years old..both of us are suffering by celiac..so for me is more worse dearest...think about to find a way to have a better life..I know that people mostly can not understand us..but what is the most important is that we have God..God can send us miracles...we should just take care of ourselves..

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