DD3 has just been diagnosed with severe celiacs. Other than going completely GF what else can I do?

[Pleasepleasehelpme123]

of course since the diagnosis we are now completely GF. Is there anything I can do to help speed up recover and help heal the damage that’s happened so far??

prebiotics? Probiotics??

thanks so much for help I’m advance

Vitamins, get a suitable daily vitamin for her age .
otherwise, just stick totally to the GF diet to allow her gut to heal. Takes a few months I think, and can’t be rushed

I would ask to be referred to a nutritionist , if I were you. I think you will need a lot of specialist advice to manage it.

I don't know much about it, but I thought it was life-long and an autoimmune condition, not something you can recover from. Somilar to T1 diabetes.

Think about cross contamination. So separate toaster, jam, butter, etc.

you may find she develops a temporary lactose intolerance while her gut heals.

Dd has it, we never felt she needed a nutritionist to be honest. I’m assuming you feel ok with knowing what she needs to avoid? Watch out for “may contains” as well on ingredient lists. Then it’s just a case of making sure she has a balanced diet while being gluten free.

@CremeCremeEggThief No. Maybe you're thinking of Chron's.

Coeliac is 'just ' their bodies can't deal with gluten at all - steer clear of it and they can live a completely normal life (apart from having to make sure they avoid the many things with gluten.)

OP - like a PP said - vitamin and mineral supplement, and make sure she's a healthy weight to help get her strength back. X

Has she been tested for her iron levels as well? DS’s levels were very low and was on iron supplements for a while once he was diagnosed.

Other than that - just be super strict about being GF - it’s the only thing you can really do.

This is what I’m wondering - is it not enough to look at ‘ingredients’ on the package? Virtually everything says ‘may contain gluten’ should I avoid anything that also says ‘may contain’ for example walkers crisps?? The Dr didn’t specify interns of what was considering acceptable in terms of ‘may contain’, traces etc??
thanks again!

will send an email asking him to specify but I don’t think I’ll get a response for at least a few days and would like to know asap

You can't have severe coeliac, you either have it or you don't. It's probably that your DD has quite severe damage to her intestinal villi which will take time to heal.

Usually people are referred to a dietician and possibly also to a coeliac-specialist nurse, to be seen yearly. There should be a yearly blood test and she'll be weighed and measured each year to check on proper growth. Some areas in the country monitor bone density but not all.

DD is coeliac and it's pretty easy to manage once you've got your head around it all, but that takes time. It's overwhelming at the start!

@CremeEggThief is correct that it’s life long and an autoimmune illness.

I think when OP talked about “recovers” she probably meant gut recovery. A lot of damage is done while eating gluten prior to diagnosis and this damage will heal. But yes, will need to be gf for life.

It can be worth looking at the Coeliac.org website.

Also make sure your GP has been informed by the Consultant. The GP surgery should be offering a flu jab early each flu season and a pneumococcal vaccination every few years.

The U.K. is really good for packaging so reading the package is enough. In the ingredient list wheat, barley, oats, rye will be in bold so easy to spot. If they are a may contain then it will say this on the packaging but not always in bold so read carefully after the actual ingredients list.

walkers crisp are a no, Dd reacts to these, plus any other may contains such as dairy milk. It’s normally down to production set up and cross contamination. Or dairy milk which coats the blades which makes the chunks with flour.

so yes if it says may contain then avoid it.

I think you definitely need to avoid anything that says may contain gluten and even then expect to sometimes be caught out.
This is not an easy road ahead of you, OP, which is why I suggested specialist advice might be helpful.

Not to nit pick but it’s not severe coeliacs, it’s just coeliac disease. There’s no variation. You either have it or you don’t. Some people just don’t react as much.

So if you sign up as coeliacs U.K. (a child’s account) it’s cheap and you get an app with a barcode scanner.

Join a few Facebook groups. Have separate items (we have 2 toasters) and label them. I prepare food in a separate area as well.

In a few months you will know your brands and where to shop. There is tons more available than there was when I first started shopping for GF 10 years ago. Be careful in free from aisles as it’s dairy free etc as well.

Be prepared for misinformation from people who don’t understand it at all telling you the things your child can eat which they can’t. The worst are people who choose not to eat gluten who in fact quite often, still eat gluten but don’t realise it. Most people don’t understand contamination.

Are they going to test you all as it is genetic?

DS (diagnosed at 4, now 18), takes vitamin D and B12 supplements, on medical advice. You should also be offered a bone density scan, and possibly supplement with calcium for a while.

Coeliac is an autoimmune condition.

Btw we don’t ever eat ‘may contain’ DD reacts very very badly and it’s not worth the risk for us.

This. Personally I’d go completely GF with everyone- you can make your own bread in a bread maker gluten free flour. Rice is fine as are potatoes. Just make everything from scratch- lots of meat, vitamins and carbs. Skin on elbows etc might be bad. You should see an improvement immediately and then longer term.

@unicornhair thanks for this - I’ll sign up. Yes the paediatrician said for both parents to be tested.

I’m going to go GF myself out of solidarity anyway. I have a couple of autoimmune diseases myself so I’m guessing it’s from me.

just to clarify: if under the ‘may contain’ section it says ‘gluten’ not in bold font, can he still not have it?

@Pleasepleasehelpme123 - that’s right, if it says may contain gluten, whether it’s in bold or not, it’s still not acceptable for a coeliac diet.

Even if he doesn’t seem to react badly, it doesn’t mean no damage. The damage may not register with him and/or may be neurological so don’t go by ‘it seems fine’ - go by ‘strict gluten free diet, no ‘may contains’ and no cross contamination.

It’s a fucker of a diet (I’ve been diagnosed for 30 years) but it’s the only treatment we have so far.

Honestly OP I think your DD will be okay. I was in my late teens when I was diagnosed so many more years of destruction to my insides but I'm okay. She'll recover.

My friends DH was diagnosed a few years ago - he managed fine, but be aware of things like Play Doh which contain flour - friend had to chuck all of it & especially if your child may try & eat it.

@unicornhair your post was spot on.

I’ve found paediatric dietician great source of support and inspiration for living with coeliacs disease.

I think it’s a bit alarmist to say it’s not an easy road ahead, particularly when by your own admission in your first post you don’t really know anything about coeliac disease.

OP, I know it feels completely overwhelming at the moment but you and your DC will adjust incredibly quickly. As others have recommended, the coeliac society website/app and membership is really helpful. I found this much more useful than the NHS dietician I was referred to. There is a great coeliac community online as well - on Instagram there is Becky Excell and Laura Strange who both post lots of recipes, and also reviews of products and guides to eating out.

As PPs have said, your DS doesn’t have severe coeliac disease because it’s binary. You either have the antibody called gliadin, the one that fights gluten (and therefore your own tissue because gliadin sticks to the villi) in your gut like the stupid overzealous antibody it is, or you don’t.

Likely what the consultant meant was that the damage was severe. As PPs have said, the villi will recover well enough. In a coeliac, the villi never recover back to their fullest extent as they are always ‘stunted’ but they’ll recover to the point that he’ll be much better at absorbing the nutrients from his food than he has been to date.