Other autoimmune conditions?

I was diagnosed with coeliac disease in 1970 aged one. I'm 42 now and for the first 39 years of having this condition didn't suffer any other additional health problems. On turning 40 almost overnight my health deteriorated with the onset of Uveitis, bowel problems indicative of Crohns/Ulcerative Colitis and joint/skin/thyroid problems. The initial flare up lasted three months and left me feeling exhausted. At one point last year I was under four different 'ologists' at my local hospital, Wirral - who despite many blood tests and scans/colonoscopies - could find nothing other than a blood result of HLA B27 positive. I spent a year off work and had just started to feel better when last week the uveitis flared again, followed by joint pain and skin problems. I'm back on steroid eye drops and dilating drops but have no diagnosis. I have been to my GP today and asked what she thinks, to be told its definitely auto immune disease, maybe anklosing spondylitis to reactive arthritis... I'm in a nightmare

Has anybody else had similar to me?

11 Replies

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  • first of all hugs to you as it sounds like you have been having a really rubbish time of it...I do not know much about your specific health issues but you really are not alone...I have allergies & intolerances to all sorts with my particular favourite for dramatic affect being anaphylaxis to wasp stings...I also have lymphocytic colitis which can play havoc with me but thankfully is very much controlled by some meds & the gf diet...I used to have terrible aches & pains /arthritis before becoming gf & thankfully this is mostly gone & thats how I would like to keep it...I would say as far as you go I would be looking @ your lymphatic system as it may be overworked or not working properly & if you are willing you can have some work done by an alternative therapist specialising in this which I have had so many people recommend to me but I have never actioned because my conditions are bearable I guess...have you considered toxins in your home or in your toiletries ? think about switching to gentler/natural brands possibly ?...good luck with it all & dont forget the medics dont know it all so research for yourself & empower yourself @ the same time which will hopefully give your mood a boost x

  • I was a well person until diagnosed coeliac then psoriatic arthritis (an auto-immune disease) plus a spondilytis, in the early nineties. don't think I've been well since with one thing and another. I had to retire from work early (special needs teaching assistant.) It was too demanding on my joints. Am limited to what i can do as my hands are more affected than any other joint.Have just hammy meds changed after two years of horrible side affects i have found somebody who has listened to me. YEY!! So be persistent. I understand the frustration and the pain and not knowing for sure. I must say alternative therapies as ladyshelly says are often a great help for a period of time.( i think ladyshelly is worth listening to) During the summer i had an eight week treatment of accupressure. Trial and error. It is amazing felt better for a couple of months. Expensive but recommended.

    Good luck

  • Well first of all poor you! this is very sad reading and I am sorry. I agree with what Lady Shelly says about the experts not knowing everything. I would take a step back and see if anything changed before your new issues arose, like a different medication.

    I say this because I had a knee operation and they said how healthy I was as the aneasatists was a coeliac and then after the operation my blood levels gradually went down hill and they then diagnosed me with microscopic colitis so I asked about the pain killers they had put me on and the specialist laughed and said that they would not cause anaemia. So regardless of this I stopped taking them and my iron levels rocketed.

    Reiters syndrom (reactive artritis) is an auto immune disorder triggered by an infection elsewhere in the body so this is what I would try and get to the bottom of.

    So you ask away because the majority of us have ''other'' related conditions. And things have gone from bad to worse for you and in my opinion you have nothing to lose by trying to get your self treated holistically, treat the body as a whole rather than treat individual symptoms which can have a side effects which interact with other body functions, so go for a cure for the actual cause of your health issues. (Find the actual cause rather than treating symptoms)

    Good luck and try and keep on top of things,

    Jerry

  • I'm the reverse of you, Fleakadee. My body has deteriorated since I was a new baby with exzcema. It has been a life filled with one health crisis after another. Many times I was accused of being a hypocondriac, having PMS or being post menopausal. I have a number of autoimmune problems including thyroid, arthritis, chostochondritis and fibromyalgia. I have numerous rashes, digestive and bowel issues. My body fights inflammation every day even though I eat a diet that is very strict and all my food is prepared by my own hands. I was diagnosed with gluten problems 5 years ago, but only after I lost my 32 year career as a teacher to chronic illness. I was forced into early retirement. Now I know I have multiple food, environmental and drug allergies. I know I will never recover. I accept that the damage is done and I must do everything I can to nuture my body and heal what I can, just tackling one small problem at a time. I have learned to focus on what "I CAN" - do, eat, enjoy - I contribute to society by running a web site filled with recipes, articles and information (when I can). I love myself enough to treat me with great love, respect and affection, just the way I am. Sometimes it all seems overwhelming and I allow myself to grieve for what might have been or what was. In the end, I am a survivor, I refuse to lie down in defeat. So, I get back up and make the very best of what I have. You can do this ... believe in yourself... love yourself... spoil yourself rotten. You deserve it.

  • Hi Liana, I thought WOW! when I read this as I can so relate to what you say about so many things. In that I have real problems with many medications and alcohol. And on one level I face huge restrictions that others can't imagine but I also focus on what I can do rather than dwell on not being able to eat/drink this that or the other etc. I think that I am how mother nature made me and if its good enough for her it's good enough for me.

    As well as being a coeliac because I was not diagnosed until my early 40's my immune system has attacked my colon so I have microscopic colitis and aspirin and alcohol and other astringents can cause internal bleeding for me which can last for days or months. I have osteopeenia because of malabsorption for all those years. I also went down with inflamed kidneys for around 18 months which just whoosh and went and that was at the end of 2007 and I have felt better and better ever since and I feel of rude health and others don't feel sorry for me they always say ''aren't you lucky'' this makes me laugh but I agree with them because I appreciate not feeling ill and I make the most of life.

    I say to my friends when the odds are against me, I'm a survivor and when I'm on top of things, I'm a winner.

    So I am very glad that you said these things as I do sometimes feel quite isolated.

    And I hope that you manage to get on top of your health issues, it's one step at a time. And you are in good company on here just as I am, so feel free to ask about your health issues.

    Jerry

  • Thanks Jerry ... it's good to know I'm not alone. Your journey, like mine, has been a challenge through which we've grown and learned. I have learned to chuckle when my body throws me a new curve. "Bring it on!", I say, I'll figure it out, eventualy. In the meantime, I make a point of celebrating life every day with the small things.

  • Just a little thing to add - is the timing of these flare ups relevant? A year apart? For example something you do this time of year? something you gave up last time and started doing again? Have you had Vitamin D levels checked - Vit D is involved in your immune system and other metabolic processes and many people have levels that are too low in the winter months (assuming you are northern hemisphere) Vit D deficiency is also common in celiacs due to malabsorption. I expect you are tested for this but just in case...

  • I can relate to so many things I read on this site,and feel that I am not going crazy,For the last 30yrs I have been admitted in hospital at least three times a year with severe stomach pain only to be sent home after a couple of day being told I have ibs and inflamed bowel [ I have lost count how many cameras I have had up and down] At last two years ago a consultant who saw me at my worst was determined to find what was wrong with me and I was diagnosed with CD I was over the moon!!!! The brain fog,the pain,joint pain all eased ,but a few weeks ago the symptons have re-appeared and after much studying I know its after I have something with lactose in it, I also have to have a B12 injection every 4 wks..and recently been diagnosed with an autoimmune disorder called Sjogrens Syndrome does anyone else have this?........

  • After complaining to my Greek Gp (I live in Greece in a mountain village) for three years and being told it was my age (56) I decided I was at the end of my tether and paid to see the endocrinologist. After tests he confirmed I was indeed Coeliac and I also had Hashimoto's thyroiditis and a large nodule on the right node. Thank God it was not confirmed as my age LOL

    Since then I have been gluten free and on a low dose of levothyroxine. I actually feel better than I have for the last three year or more. The endo works with me as I am a competing female bodybuilder and he has to bear my training and diet in mind when adjusting the medication. I go for a scan every six months and repeat blood tests.

    I am so sorry to hear you have been having such a hard time. Hugsxx

  • I was diagnosed with Coeliac disease and systemic lupus shortly after. After going gluten free most of my stomach problems improved but i still have joint pains and very dry eyes. Your GP should refer you to a rheumatologist who can do further tests.

  • I have Churg Strauss Syndrome, a rare autoimmune disease. I eventually took myself off gluten as I suspected it may have been responsible for my bowel problems. Hey presto! Within 3 days my bowels were better than they had been for 4 years. It was a minor miracle to me.

    I follow a GF diet, without any help from the medical profession, so I therefore don't get free prescriptions etc. As we all know going GF isn't cheap if you're doing it yourself.

    Pity going GF didn't "fix" my CSS! :-(

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