Coeliacs Diagnosis 11 weeks ago still fatigued

[Chazzalazza]

Hi all! My DD4 was diagnosed With Coeliacs first week of December 2024- after 7 months of fatigue and getting any and every bug going. it was a massive shock despite coeliacs running in my family - just didn’t see it coming and I never saw any signs in her bowel movements or behaviour to cause me concern- the fatigue I put down to being 3. It’s been a journey. She is Strictly GF and so is our household. After 2 weeks of initial thriving we were hit hard as a family with sickness bug, flu, conjunctivitis, then a stomach bug it’s been a hard winter!
she has a multi vitamin and probiotic and we are now treating her for potential Constipation overflow- after two weeks of agonizing abdominal pain that no one could give me an answer as to what she was going through.
Ive been down some dark holes this past two weeks sick with worry. I decided to take her off dairy the day before we managed to get a drs appointment to discuss whether or not she might be constipated and the stomach pain subsided. I wonder if she has developed lactose intolerance.
The one thing that is concerning me is her on going fatigue. She’s been on the laxatives for three days today and I think they are helping a bit but she’s still had two leaks today or urine ( defo no UTI infection) -
We leave the house and she just goes white with huge bags under her eyes. Then the irritable behaviour comes out- so unlike her, I just feel like I’m failing her and I don’t even know after two weeks off school ( one initial week off with this stomach pain) and half term, I’m worried about how she ll cope going back in. Part of me is rational and thinks she’s just needs time to recover - the other part thinks there is something else wrong and it’s cruel to send into school if she’s exhausted after half an hour. Maybe the stimulation of school will offer her distraction.

her bloods are great iron and iron stores all good and no concerns over folates and b12.
anyone going through this or anything I would appreciate your advice.
I have booked her in to see an osteo who has coeliacs and she has a gastro appointment in 5 weeks. Just feels so lonely and heart breaking heating your child suffer

Hi, my ds10 was diagnosed with coeliacs end of Sept 2024 so has been GF for 4.5 months and we're STILL having symptoms, don't get me wrong certain things have improved but others haven't. I would say I've only noticed his energy returning to CLOSE to normal the last 4 weeks. He is still taking daily Laxido to manage his constipation, and he is still taking daily Omeprazole to manage his reflux. He's also on a multivitamin and a weight gain milkshake given by the dietician. He did 2 months on probiotics at the beginning which consultant advised. I was also advised on here by other coeliacs to avoid oats even GF oats for the first year which we started doing back in December too. Basically what I'm saying is that it can take up to a year for the gut to heal and nutrients to be fully absorbed to therefore resolve the knock on effects and symptoms. So 2.5 months is still early days and believe me I know how frustrating and heart breaking it is to witness the ongoing affects of this disease and how difficult it is to have any patience in regards to the healing process.

Thank you so much for your kind words I be definitely spiralled the last few weeks, we were originally told we wouldn’t get to see a dietician or gastro for 10 months but I guess we got moved up the list because I took her to a&e last week about the tummy pain. It’s so consuming and you just feel so alone, all the crossovers of symptoms and everything it’s just endless! I guess we have kids who need more time and a winter diagnosis sucks! Whisk them off to somewhere sunny for 6 months I recon 😅

10 months?!? That's insane. Have you seen a peadeatric consultant at all? Who diagnosed the coeliacs? We saw a consultant within 4 weeks of positive blood test, dietician was longer about a 3 months wait. The consultant has saw him every 4-6 weeks since the first appointment so we've had 3 appointments in total. I feel your pain, my son (and me n husband) got norovirus last month and my son ended up admitted to hospital with dehydration for 2 days, it happened so rapidly and it took us nearly 10 days after to build up his strength and appetite again and he'd lost 3lbs (which believe me he could not afford to lose, hence the weight gain milkshakes), being brutally honest it's been a fucking nightmare so please take solace in the fact that you're not alone!

Hi OP my granddaughter was diagnosed aged 4 and she has all the constipation problems and takes laxido daily. She has an absolute phobia about pooing in the loo .
She was fatigued,bloated ,anaemic and a very anxious little girl.Unexplained high temperatures and just generally a sickly child.Pale ,grey shadows under her eyes .
We have been rigid with her GF diet and gluten banned from their household to avoid all the cross contamination etc.
Now a year later she is definitely more energetic,less anxious and hasn’t picked up too many bugs over the winter.
Her recent blood results are still abnormal but very much improved.
We didn’t really notice a change in her general health until about 6 months ago .
Remember there will be a lot of damage to her intestines which will take time to heal .
Good luck,you will get there ,it’s just very overwhelming because it’s a disease that will never go away but can be managed.X
Edited to say that her management is dietician led rather than consultant led . GI consultant obviously diagnosed based on her blood results but the management is diet led rather than medical intervention.

It’s crazy isn’t it, the Dr who gave us the diagnosis refused to refer her said there was no point based on the waiting time to see the dietician in our area. Find it all on google. After 6 weeks of still being run down and fatigued I spoke to a different dr who did put in the referral annd he said it will be 8-10months and helped get some juvela on prescription.
Then finally last week did a wonderful Dr who is a mother and who has coeliacs in her family-re did the referral and just kept apologising. It’s been such a lonely experience. Thankfully we have an appointment now with paediatric Gastro in 5 weeks but we ve pretty much been on our own.
Shes had two blood tests and based on family history of coeliacs she’s been diagnosed. Her first one her levels were sky high, she only had a second one because I was worried about her iron levels and the until dr at the beginning had forgotten to request her iron stores. Anyway still coeliacs but thankfully her levels have come down since being strictly GF so that’s reassuring.
Anyway. It s been pretty crap! It will be nice to have some proper care and whilst I feel like I’m doing everything I can it would be good to rule things out and have a plan tailored to her needs. So greatful to hear other peoples journeys and no we re not alone

It sounds like a challenging journey, but so amazing f she has such a supportive family around her. So hard trying to navigate everything outside of the safety of the home bubble! People just try to be so helpful but just trying to constantly explain the contamination risk etc you can see it flying over their heads

Yes you do have to be very vigilant eating out. Unfortunately GD has been glutened twice at school recently which has been very frustrating!
Birthday parties are also hard to navigate because we don’t want her to feel ‘different’
My daughter very relaxed about zgD eating with other children and she knows not to eat other children’s food.

Hopefully by the time the appointment comes in 5 weeks you will see even more of an improvement of symptoms especially as the good weather should be coming in by then too so less germs spreading around. My advice would be to avoid GF oats, keep going with the lactose free and everything else you're doing with the multivitamin & probiotics. Plenty of rest for your little one to build her strength up over time.

Thank you so much I really needed this support today!

No problem at all! DM me any time if you want to talk about it x