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?

Oh and my dad had a weird autoimmune illness. He was very, very ill and spent nearly a year in hospital. They never gave him a definitive diagnosis and said the nearest they could come up with was Wengers disease, but they weren’t convinced it was that. There was talk that such stuff can run in families. They gave him chemo to try and knock his immune system down and in the end the chemo gave him leukaemia which killed him.

So there’s this slight anxiety that she has something which runs in the family which even some of the top doctors in the country weren’t sure what it was. I remember one consultant saying he was sure there’s more autoimmune disorders than are named in textbooks,,,,,that they’re still finding new ones.

Is she particularly hypermobile? I am, and had a lot of unexplained symptoms for years before being diagnosed with ehlers danlos symptom. It's often not picked up by doctors from what I have heard and took a lot of pushing on my part. A lot of her symptoms sound similar to me including the fainting and struggling to stand and the pain. I also have food allergies and apparently (I have read) there is a high correlation of food intolerance in the eds community.

I don’t think she has Wegeners disease as she has no signs of vasculitis.

I’m not sure about the hyper mobility. She comes to body balance class with me and is certainly very flexible, can do a standing mermaid pose and I think is the only one in the class who can. But then she’s 18 so I just thought she was flexible.

We paid for a private allergy test a few weeks ago in desperation. I know there’s stuff saying they might not be accurate, etc. So was planning on asking the consultant next week his opinion but it came back that she’s allergic to dairy/lactose.

When she was first diagnosed as coeliac she couldn’t tolerate dairy and would vomit instantly. Consultant said it’s quite common and usually temporary. After three months she seemed ok and reintroduced dairy and was alright.

She’s decided to go dairy free again to see how much difference that makes but no difference yet.

I’ll ask about Ehler Danos syndrome.

I’ve just googled it and it says hernias are more common. She has a hiatus hernia....always thought that was due to so much vomiting.

I know most people are going to go straight to the autoimmune they know, but have you had her blood sugars tested? Coeliac is very strongly tied with type 1 diabetes, and some of those symptoms sound very like long term high sugars - particularly the tired and ill. Has she been thirsty and going to the loo a lot?

They check her for diabetes just about every tine she goes to the GP complaining of a new symptom. And she’s at the GP a lot! Think she’s been 3x in the last month. 🙈

Just checked her online test results and they did a hba1c blood test for diabetes last month and a urine dip for glucose and both were normal.

What is her B12 level? Folate level?

If she has coeliac she probably won't be absorbing so well, and deficiency of these can make you feel awful. Especially if she is dairy free too.

B12 deficiency can cause mouth sores, pains in the body and complete exhaustion (speaking from bitter experience!)

Her ferritin was 11 that was back in April.

Hasn’t been repeated but an fbc last month had a hb of 130.

She takes 2 iron tablets a day now so I’m hoping her ferritin has improved.

They don’t seem to have ever checked her b12 but she does take a daily b12 supplement. But only for the last month.

I would ask for b12 and folate to be tested- I'm surprised they haven't been as theyre pretty standard and low levels could cause the symptoms you describe. Especially as she is iron deficient and coeliac

folate is 5.9, normal.

Just found a b12 result and it’s 670, normal.

Found a recent ferritin result from last month of 13 so that’s still low.

Her neutrophils are slightly low at 2.0. Also her MCH is low at 26.

And has cut out dairy! B12 is only found in animal products

Xpost, yes sorry just found those results under another test. So folate amd b12 are normal, ferritin is still low.

She’s been vegetarian for years as well. But the allergy test also said she’s allergic to all meat!

Her ferritin result says normal range is 20-130. Maybe as hers is 13 that’s what’s causing the problems.

I might get her to ask the gp for ferrous fumerate rather than ferrous sulphate as it doesn’t seem to be doing much. She takes vitamin c as well.

Behçet's?

What is her diet like then, does she eat eggs?

Sounds very restricted being coeliac,vegetarian and dairy free. (Not a criticism- she doesn't have much choice it seems!)

Is she underweight? Is she eating enough?

Just googled bechets and she’s never had eye problems, skin sores or genital sores.

But the mouth problems, disorientation and joint pain and digestive problems fit. I will add it to my list of things to ask about. Her consultant is going to think I’ve got Munchausen by Proxy at this rate!

She does eat eggs.....allergy test said she’s only intolerant to eggs rather than allergic so we’re ignoring that!

I don’t think her diet is great. She eats a lot of gluten free pasta with mushrooms, gluten free toast, gluten free waffles, gluten free pizzas and chips. Some gluten free curries. Quorn sausages. Sometimes a quorn chilli. And not much else.

I am having a crack down on this. So yesterday I made a chickpea, sweet potato and spinach stew which she liked. Also did a quorn and mushroom and beansprout Thai green curry which she liked last week.

I’m not a great cook and when she was initially diagnosed I tried cooking stuff and she would refuse to eat it saying I’m shit at cooking. But I lost my shit last week and said she either needs to cook for herself or eat stuff I’ve cooked even if she doesn’t like it because she needs more veg, etc.

So that’s two healthy dishes I can cook which I know she likes. She’s even said she will have a go at cooking them herself. I’m also quite good at soup so I’m going to get cracking with soup making. I’ve also ordered the Boosh vegan cookbook which looks good.

You sound like a great mum

I wonder about asking for a referral to a dietician? It sounds like she's not getting a huge amount of nutrition which must be playing a part in her exhaustion. Sounds like you're trying though!

And yes, she needs to start cooking for herself! There are plenty of vegan gluten free recipes on Instagram she can take inspiration from (presuming she's on Instagram!)

Could all her symptoms not be down to low iron? I know when I was deficient I was breathless, had chest pain and was exhausted?

I know you've said you're getting the bosh cook book, which is an awesome book! I can also highly recommend the cookbook how not to die, its really good, Dr Gregor has a 'daily dozen' and makes sure his recipes have a lot a variety in them to make sure you're getting a good chunk of your nutritional needs met without meat or dairy 😊 if you're not sure on getting the cookbook he has a lot of his recipes on YouTube 😊hope your daughter gets some answers soon

I always thought I was very flexible too and that it was a good thing! Ha if only I'd known!

Just one thing, if she is very hypermobile, even if it's not because of eds, she needs to be careful with what kind of stretching she does as hypermobile people may stretch too far and end up causing damage in the long run (speaking as someone who has had arthritis and early wear and tear and disc degeneration etc since the age of 26). Things like yoga can be bad - I don't know what body balance is so sorry it may not be relevant.

If you have a couple of new ideas now about what could be causing your dd's issues I think it would be a good idea to get your dd to read up on them before she sees the gp. There's usually a checklist of criteria used for diagnosing things. She might be able to rule out some of the things that have been mentioned here based on the diagnostic criteria before you go back to the gp.