I’m worried dd has lupus or some other autoimmune problem.

[Stupiddriver1]

She’s 18yo and has been diagnosed as coeliac for a year. I know this can increase the risk of other autoimmune problems.

She’s obviously strictly gluten free, we’re aware of cross contamination and she has her own toaster, knives, chopping board, butter, jam, etc.

She’s fine most of the time......her last blood test (can’t remember the name of it) was 4 which is low/normal. If she was still frequently having gluten it would be higher.

So on going symptoms are mouth sores/skin sloughing off the roof of her mouth, bad joint pain....particularly her hips. Chest pain. She’s still anaemic/low ferritin even though she takes iron tablets twice a day. She also takes 3000 vit d a day. Her last vit d check had levels of 57, she was only taking 1000 of vit d a day then so we increased the dose as I know that even though 57 counts as normal it’s better to be over 70.

Sometimes she’s breathless. She has chronic fatigue. I mean totally exhausted. She’s spent nearly the last week in bed, she’s been unable to go to uni. She fainted on Thursday, but not out cold. She was staggering about, was disoriented, said her vision went and slid down the wall. Her Saturday job have just sent her home early as they said she appeared ill. I went to pick her up and she almost seemed drunk, I could barely get any sense out of her, she was struggling to stand.

She has an appointment with her gastro consultant next week. I have a big list of ongoing symptoms. Do you think I should ask for a referral to another specialist? Like an autoimmune consultant?

I would ditch all the GF substitute foods tbh. Cook from scratch, lots of fruit, veg, carbs, nuts etc.

It took a year or so for my gut to heal. I've never had 'typical' symptoms. There no way I could tolerate GF substitutes in that time although I did try. I was also having problems with dairy and also soy (which is basically in everything).

I've gone though phases of unintentionally gluten myself over the years, the most recent was drinking GF beer, it's just not GF enough despite what it says on the bottle and I've spent the last 6 months with major issues and damage to my health.

I was also using a lipsticks and lip balm for months that had gluten in but hadn't realised which led again to loads of problems.

Each time I've had to go back to basics - cook from scratch, don't eat out, don't let people cook for you, don't eat GF substitute foods. It's takes forever to fully recover and is a complete pain but works.

I think it could be a good idea to check out symptoms of Addison's.My daughter has it.