Does anyone else have the combination of lupus with coeliac disease or lupus and under active thyroid?

[Jenniep85]

I have all three conditions and looking to find out if there is anyone else and how they manage with food, exercise and weight control

[Lupylass]

Hi. I have lupus, Sjogren's and coeliac. I have found following a gluten free diet ok, although more troublesome if I want to eat out. I make sure I eat plenty fruit and vegetables and try to ensure I get lots of calcium (since people with coeliac need more calcium).

Exercise wise, I dog walk, do Pilates, cycle and swim. I listen to my body though and only do as much as I feel able to. When I'm tired I rest and don't feel guilty about it. Don't be hard on yourself. I have built up slowly as I've felt more well, and there have been little hiccups along the way!

I have chocolate most days but just a little! I just try to have a balanced diet. It seems to work; since coming off steroids I've lost 3 stones.

Hope this helps!

[roobarb]

I have lupus, auto-immune hypothyroidism, Sjogrens syndrome & fibromyalgia. More recently I have started to suffer with ibs symptoms, as yet undiagnosed. I have a cousin who is coeliac, so did wonder if this was a possible cause. For now I am managing the symptoms by taking care with my diet.

For exercise, I find the best thing for me is walking. I have tried Pilates & swimming, but I get so exhausted that it takes me days to recover. With walking I can adapt it to how I am feeling.

Auto-immune disease seems to effect each person so differently, so try out different forms of exercise until you find what suits you. Listen to your body & try not to push yourself too far, too soon. But above all it must be something you enjoy, otherwise you won't carry it on.

Best wishes. X

[Needmorehours]

I have MCTD, coeliac & DH, Sjorgrens and Reynards...... I believe an underachieve thyroid BUT am still battling for more the TSH testing.... RA/Lupus...I put on a stone the first month after the coelics diagnosis with the change of diet, then got pregnant.... lost all the baby weight but never that stone. Now a few years later and 2 + yr of steroids I have put on about 3 stone.... I can't shift it. Exe wise I find v difficult as bits of me tends to fall off! well not literally, swimming is the only thing I find ok but I don't get there very often. GF diet is much better than 15 yrs ago... superstores are catering for our needs better.... not having to go to the GP to buy a loaf of bread seems revolutionary now!!!! Have you joined the Coelic society????

Good luck -

[Zoeblu]

I have auto immune hypothyroid and lupus which was diagnosed last July but they believe I may have had it for approx 20 years. In 1996 when I left uni I was really ill with crippling fatigue - my doctor advised me to stop looking for a job and gave me anti depressants. I was very fed up but not depressed. My mother heard about an alternative food intolerance test. I followed the diet I was prescribed and within 4 months was working full time and felt amazing! So 16 years later I'm trying it again! It's so hard as this time I've been told no carbs or sugar! I've been doing it for nearly a month with mixed results! Some days I feel great and others totally rubbish but I'm also reducing my steroids and I'm down to just 3mg now! Fingers crossed it will work again! I'll post again in a few weeks to let you know how it's going! My husbands not overly pleased as I am a bit of a foodie and l love baking so I'm a bit miserable!

I've hardly been exercising.... I think I'm afraid of it. I used to run and ran a 1/2 marathon after the birth of my first child 7 years ago but since my son was born (5 years ago) I seem to get ill every time I exercise. I started running again last January and started my most severe flare last march which I'm still feel like I'm recovering from both physically and mentally! I know I need to mentally beat lupus - any advice on that would be good. Even when I feel good I'm afraid to grab hold of life incase I bring on a flare!

[brave in reply to Zoeblu]

can i just say its so relieving to hear someone else has adverse affects to exercise ,i like you could run ,swim ,hard,cycle the lot ,i did used to get exhausted wasily and many symptoms but i did recover ,we relocated back from australia last year and i thought i would start running again ,bi big mistake after a very short while and a big bout os shingles im still in a flare and lucky if i can walk snail pace without ending back in bed swollen lymph nodes etc ,its a joke ,and as you know having kids we need to hold on to what energy we have ,if we have?i also am completly paranoid and afraid to try anything normal incase my flare worsens as it usually does ,

[Chicklette]

I also have Lupus, auto immune hypothroid, IBS, auto immune depression. Such fun! Like you I struggle with my weight as it's so hard to exercise. I walk when I'm able and go to 2 fairly hard yoga classes each week as I have a fantastic yoga teacher who understands my limitations and finds easier ways for me to do things when necessary.

I try to follow Slimming World, and go to classes most weeks, although I find it really difficult to get the mental energy to stick to the plan a lot of the time. But I continue to try to o my best, and tell myself I WILL lose weight one day, and I WILL feel better soon!

[keep-on-going]

Hi I also have lupus, underactive thyroid, coeliac disease, raynards, very low neuts and arthritis .Been coeliac for 15 years and arthritic for 23. Dermy diagnosed me with lupus last year after skin problems -constant red face. Gluten free Diet is no problem, I have never needed to worry about my weight thank goodness. I cannot excercise at all ,legs ache all the time but I am just about able to keep down a part time catering job - not very easy but the amount of drugs and painkiller patches keep me going ! But always very very tired.

[lubby]

OMGoodness I always wondered the same thing! I was diagnosed with SLE nephritis 23 years ago at the same time confirmed with DH (dermatitis herpataformis sp?), then underactive thyroid some years later and about 9 years ago with Coeliac. Then on Tuesday was told the dermatitis on my scalp was Discoid! I would prefer to have collected stamps Lol Hence why I find myself here I was trying to find some boring practical information as so far confused. Oh and I love my food, apparently my boss likens me to the advert with Joan Collins and the snickers! My weight does bother me but we're planning on buying bikes to try and excercise. I've never been keen on excercise even as a child but we rented bikes near to us last year to see how we got on and it was fun, ached like crazy for a couple of days but it didn't put me off.