Coeliacs - help needed!

[AllCatsAreSpecial]

Hello,

Recently diagnosed with coeliac disease. It’s in my immediate family so thought I knew all I could. Haven’t eaten gluten (on purpose!) since end of term (mid July ish).

Thank god, my awful stomach issues are a thing of the past. It’s amazing. Can’t believe how I managed before?!?!

However, I have always suffered with skin that is very sensitive to touch/pain. My clothes hurt on my body. I am also really suffering with extreme fatigue at the moment - it’s always been quite bad but I am dead on my feet. Like, thinking about how I could just lie down and sleep on the pavement tired. Can’t keep my eyes open on the walk from the car to my flat tired. (Luckily I’m not the one driving!)

I am wondering - is this normal? Is my body adjusting and will this even out, or should I speak to my GP? As I say, this hasn’t started recently, it’s more an escalation of what I’ve had for as long as I can remember really.

Have you had your iron levels checked? Anaemia is a common side effect of coeliac and it might be that even though you are no longer gluten free you still have residual low iron while your body heals and the villi recover?

You definitely aren't still eating accidental gluten e.g. through soft drinks /butter/ sharing toasters etc?

Not sure about the skin thing, there's a number of auto immune skin issues that can be linked to coeliac though.

Sorry that should read 'now you are no longer consuming gluten' not 'now you are no longer gluten free'

@pastabest yeah, my ferritin is the low end of normal but when I spoke to my GP she said that it was fine.

Definitely not - separate butter, separate toaster section!

It can take a while to recover once you stop eating gluten. It sounds like it's only been 4/5 weeks, so hopefully you will start to feel better soon. Worth keeping an eye on though, as there are other auto-immune disorders that can be linked to coeliac disease.

There is also a skin condition associated with coeliac disease called Dermatitis Hepertiformis. But I believe the usual symptoms include quite a nasty skin rash, which is what makes it uncomfortable.

You have my sympathies though. I was so ill during my gluten challenge that I ended up having to work from home. Only went in one day a week for a few hours. I remember my head of department looking at me once towards the end of my challenge and saying "fuck, you're actually grey!"

If I get glutened now, one of my main symptoms (as well as my awful guts) is still the dog tiredness.

Hope you perk up soon!

@sar302 I’m pretty sure I have that skin condition!!! I couldn’t believe it when I read about it - thought I was just very sensitive to shaving! Of course that might be it but I’ve had it on and off since I was 16…

I really hope it’s just my body working things out and getting used to not eating gluten. That sounds horrible - gluten is a delicious evil! Thanks so much for your comment.

It took me about six months to feel much better post diagnosis and giving up gluten. Until that point exhaustion, aches and pains continued.

Coeliac UK is worth joining as they have a helpline, apps for checking food and restaurants, regular magazine with updates and recipes, local groups and a food handbook. Also, you can then get pointers on getting free samples. Glutafin and Juvela used to do some.

Skin wise Dermatitis Hepertiformis is linked to Coeliac's.

Welcome to the Coeliac club!

It might well be that!
So you can get that tested - I think they just take a scraping of the rash? Might be worth finding out if you also have that? Could give you some answers about the uncomfortable skin, although prob not the tiredness.

I miss gluten.... sigh.... tasty, tasty gluten.

@MrsNai thank you - thanks encouraging, even though I don’t want it to take that long I would rather that than it’s something else!

I am a member of coeliac U.K. and they’re really good! Thanks for the recommendation!

@sar302 the skin pain is all over my upper body and not where the rash is but hopefully I can get rid of that too!

I miss proper Jaffa cakes so much that I once made my very own massive gluten-free Jaffa cake. It was soooo good!

@MrsNai my mum got me some of the Schar Jaffa cakes but they aren’t the same 😢

I did make her a really good gf coffee and walnut cake for her birthday this year before I also found out I was coeliac!

Boost your Vit B and Iron. Apparently celiac can cause your gut to not absorb vit and minerals properly. I'm sorry, it's a sucky disease

You might want to have your vitamin D levels checked. Some breads and cereals are fortified with Vit D and of course you will have stopped eating these .

Also Vit D deficiency is exacerbated by malabsorption, which is common in coeliacs and people who are gluten intolerant.

Have you checked your shampoo and shower gel? Quite a few of them can contain gluten and that could be irritating your skin.

Also checking every food label for 'may contain' or 'prepared in a factory which also handles x, y, z'. It's amazing how many dried fruits, nuts and other things which shouldn't contain gluten, might do.

@R0SEMARY I think my vitamin d is ok - I have severe chronic joint pain which we thought might be down to the vitamin d, so I have been taking supplements for ages. I know coeliac disease affects the ability to absorb things but it was included in my blood test and they didn’t say it was low.

@MemoryGame it’s really weird - it’s not like my skin is itchy or there’s any marks on it. It just hurts - like my boyfriend stroking my arm feels like needles. The shower does too on a bad day. I’ve checked and nothing in my toiletries and I am v strict with any “may contain” stuff!

Check vitamin B and D
I have chronic b12 deficiency due to coeliac disease

The neurological changes and tiredness sound like classic vit b deficiency

You may need injections. Damage to my guts means I can't absorb it any more

I’ll check my vitamin B - I’ve had various tests for deficiencies over the last few years, including B12 (is that the same thing?) which was normal but that was potentially up to 2.5 years ago. This has been going on for so long and I feel like I’m only just realising that it isn’t normal to always feel weirdly sunburned and completely exhausted!

@AllCatsAreSpecial

I’ll check my vitamin B - I’ve had various tests for deficiencies over the last few years, including B12 (is that the same thing?) which was normal but that was potentially up to 2.5 years ago. This has been going on for so long and I feel like I’m only just realising that it isn’t normal to always feel weirdly sunburned and completely exhausted!

Check what level they're using as normal. Reference ranges are massive

www.gloshospitals.nhs.uk/our-services/services-we-offer/pathology/tests-and-investigations/vitamin-b12-and-serum-folate/

But I'd want to be at the higher end

Re: the joint pain, have you been checked for a connective tissue disorder like EDS? Not uncommon for those with EDS to have coeliac as well.

Was just coming on to suggest EDS as a co morbidity to coeliac (both DS and I have both)

Joint pain can be a symptom of Coeliac. I had it before I was diagnosed and for some time after. I also got the sensitive skin feeling too. Coeliac can damage the peripheral nerves. It should pass with time and sticking to your diet. Although I can still get this from time to time even now and with no gluten. Unfortunately for some badly affected Coeliacs symptoms can persist
or flare up long after gluten is out of the diet.

My DH is coeliac, and is also lactose intolerant (diagnosed in the same biopsy). Apparently coeliacs are often also lactose intolerant, although for most people the lactose intolerance goes away once the coeliac disease is managed. However in my DH's case, it didn't go away and he has ongoing lactose intolerance. If he has dairy he is tired, lethargic and generally feels hungover. So it may be worthwhile asking your doctor about that as a possibility.