Celiac daughter very unwell not better 3 weeks gf

[Heps8]

Hello my daughter has just been diagnosed with celiac she has it very badly reading from bloods 3500 meant to be under 20
she has trouble swallowing, severe headaches body pains chest pains cold hands feet dizziness - how long did it take for any other celiac children to feel better?any advice much appreciated she is seeing a neurologist and gastroenterologist

Hi @Heps8 - my DD was diagnosed aged 6 (now 8). She had intense headaches, severe heartburn, pains radiating throughout her body, swollen stomach and dizziness.

It took at least 6 months for her to feel “normal”, but I did notice symptoms start relieving after 3-4 weeks, if I remember correctly.

How old is your daughter?

Gosh this is such a relief to hear glad your daughter is better, my dd is 11 and just started secondary school its been very hard with her being so unwell. Thank you for the reassurance

More than 3-4 weeks is needed. She will improve.

It took me about 6 weeks to start to see a real improvement. Does she take a good multivitamin?

Bless her - I would definitely give her a vitamin. I give my Dc zinc (both my children have coeliac disease as it is prevalent on my side of the family) as it helps to heal the gut.

Make sure as well that there is no risk of cross-contamination at home / school / wherever her food is prepared. This is by far the most difficult, as a lot of people underestimate how easily cross contamination can happen, and the impact it has on a person with coeliac.

For instance, you need a separate toaster, jam / butter (anything where you can “double dip” a knife etc), kitchen sponge, etc.

My Dd (who was so, so poorly, I thought she had cancer!), is a different child now she is GF.

Has anyone in the family been tested? My DS was a-symptomatic but he was diagnosed following an OGD at 8yo after his sister was diagnosed.

Best of luck

Thank you for the reassurance and advice. Yes hadnt thought about a sponge actually so will change that. Just hoping for a good improvement soon ive been beside myself as shes been so so poorly stomach pains after every meal despite GF so many headaches every day etc

Bless her - I know, it’s such a worry isn’t it. We ended up in hospital with DD twice due to awful headaches (there on waking / making her feel sick and dizzy) as I was convinced she had a brain tumour (my dad has one and had same symptoms) but it was the gluten causing all these awful issues.

It takes a while for the body to heal from the gluten - my daughter will have bad headaches when she gets glutened, and takes a bit longer than normal to recover from bugs / illnesses.

I would personally give her zinc (I buy mine from a kenisiolgist who has the zinc in a tasteless liquid - 3 drops twice a day) and I noticed a change really quickly with my Dc. Look into it and see if that would help your DD 🙂

poor thing. It may be worth removing dairy to allow her gut to heal faster this was recommended for my step son to go dairy free for 2 months alongside being gluten free to allow his gut time to heal. It’s awful seeing them poorly. He is much better now and can have dairy no problem but when the gut is damaged it’s very inflammatory. Best of luck

We were told up to six months. However only saw a partial improvement. I was then repeatedly accused of feeding dc gluten/contamination for several years eventually got a diagnosis of refractory coeliac disease and after a tube being fitted and immunosupresents being titrated it was like having a new child. Keep a diary, most likely will improve over next six months but do fight for more if it persists.

My 4 year old GD was diagnosed in May,with Coeliac and severe anaemia,lethargy,constipation,distended tummy etc .
Now 4 months later she is a different child.
Probably took about 8 weeks to start noticing improvement.
Today after first morning at big school she has been to soft play with grandfather who said she was racing around for 2hrs .
Hang on in there and just emphasise the importance of avoiding cross contamination.
It’s bloody hard having coeliac and restrictive but she will get used to it .X

Hi OP, over a month has passed has your daughter had any improvement? My son has just been diagnosed as well, has been GF for 4 weeks, is on daily Laxido and now daily Omeprazole (started 4 days ago), we have seen some small improvements but certain symptoms are still daily. It's absolutely horrible to see your child suffering like this. My Ds is 10 and has autism too - it's been an extremely difficult year getting to this conclusion. Just desperate for a change.

This. Dd had no issues with diary until she went gluten free after diagnosis. Her consultant warned us this might happen and if she was still unwell to cut dairy out for six months.

Thank you everyone for your posts they are reassuring - mrsbilly my mum had a brain tumour as well so i have been panicking just like you were but neurologist doesnt want to do an mri as doesnt think it is i pray shes right and just have to trust the drs weve had 3 opinions now all saying by january she should be better. Shes still suffering headaches stomach pains difficulty swallowing at times and blurred vision but i feel she is slightly better than she was. Thanks re dairy her stomach really hurt after cream the other day so we may need to cut it out though so tricky on top of gluten free.
thank you for your messages it means a lot 🥹 for reassurance as so so hard her suffering xx

Oh bless her (and you!). I really hope she starts to make an improvement soon. Have you taken her to the opticians, just to check her eyesight, because of the blurred vision?

CD can affect you neurologically, especially if you are left for a while without a diagnosis.

Are you certain she isn’t being glutened accidentally? Cross-contamination is the biggest concern really, as oftentimes people don’t use separate cooking utensils / toasters / cooking areas.

Fingers crossed she starts at improve. If she doesn’t, I would ask for another blood test just to make sure her TTGA levels are lowering, as if they aren’t then her symptoms would improve (this would also indicate that she is still having gluten somewhere in her diet) x

Thank you - her ttg have lowered from 3600 to 800 within first month so hopefully on the mend just such a slow process yes have seen opticians twice they say allergy / dry eyes but have read celiac dry eyes scarring can lead to blindness so trying to keep calm about it
saw nurologist who wasnt concerned in the least but maybe no experience of celiac neuropathy

Hi OP, how is your daughter doing now? My son is now 8 weeks gluten free and he is still having various daily symptoms and he's lost a pound in weight during those 8wks, it's driving me insane with frustration that he is still suffering.