Newly Diagnosed - Could Use Some Advice!

[Celia's Mum]

Hi everyone,

 

New here so hoping to learn a few things. Daughter (14) just had diagnosis of Celiac disease by GP. Her Ttg is 18. ESR raised a bit - was 20, apparently (age needs to be factored into that, doc said). No anaemia and basic bloods normal (FBC). She's had a ton of symptoms over last couple of years, all leaning towards Celiac - painful bowels/stomach, cramps, regular migraines, numbness and tingling in hands and toes, freezing fingers and toes, dizziness (fainted once), muscle twitching (esp under eyes), and very low BP. Lots of autoimmune diseases in close family from Crohn's to hypothyroid to Sjogren's. She's been referred for an endo/biopsy but has to wait a month or maybe up to three months as when we see consultant it's not immediately for the endo - meantime, she's been told to keep on gluten (she's been semi-gluten free for a few months as she knows it hurts her instinctively. But without an actual diagnosis, 'slip ups' with school dinners have inevitably been happening.) And now she says she says she found blood in a BM (not much and bright red and it's never happened before. She's mostly constipated). I'm hoping she was mistaken about this and it was maybe undigested food - red pepper skins/tomatoes etc as we've had those in last couple of days. She was a little uncertain about this - one minute convinced it was blood, then possibly thinking it was food. Is a little blood normal for someone with celiac?

 

Anyway, if anyone in the UK has experience of getting a private appt I'd be keen to learn where and how! Seems impossible for kids to have this privately (I'd be paying, no insurance). Plus, is it usual for the GP to refer to the paed gastro for a consultation then she/he decides if endo/biopsy necessary? I kind of got the impression the referral was straight to endoscopy but I spoke to the consultant's secretary and she said it would be for an appointment only at this stage as he didn't always want an endo. Confused!! So the max wait time she said it could be was 3 months. A long time to feed your child poison. :-( Am I missing something here?

 

Well thanks so much if anyone has any comments or advice. I'll keep reading through the forums and get to know what's what.

 

p.s. I had celiac test a year or two ago as I have v obv symptoms but came back neg. I had been gluten-free for a few months. Should prob re-test now!

 

[mommida]

I'm a bit confused.

 

You must be eating gluten for testing.  The testing picks up on the damage being done to the body while eating gluten.

 

Frequent constipation can cause small rips that bleed during large, hard movements.  Since the description is of fresh, bright red colored blood; it is most likely from injury from large bowel movement.  Still get medical attention, but don't worry that it is worst case scenario.

[Celia's Mum]

I'm a bit confused.

 

You must be eating gluten for testing.  The testing picks up on the damage being done to the body while eating gluten.

 

Frequent constipation can cause small rips that bleed during large, hard movements.  Since the description is of fresh, bright red colored blood; it is most likely from injury from large bowel movement.  Still get medical attention, but don't worry that it is worst case scenario.

Hi mommida,

 

Sorry - maybe didn't explain well! Yes, she's been eating gluten - I think enough to make it show in the blood test, which it seems to have done. At home she'll have gluten free stuff occasionally as it suits her better, but has school dinners - always quite 'gluteny' and other slip-ups. And for instance, last week I couldn't get gluten-free lasagne sheets, so just made regular. It's just when she has a gluten free sandwich for eg, the pain isn't there like it is immediately with a regular sandwich. It's just been guesswork until now, so I'd buy gluten-free stuff here and there so she's not in pain ALL the time.

 

That's what I'm hoping re the constipation. It's very worrying hearing your child report that. Thanks for the reassurance and you reply.

[txgal748]

Hi

 

She may have a hemorrhoid.  I hope someone who lives in the UK will read your post and give you advise on getting a private appointment.  Would it help if you called everyday to see if there has been a cancellation.  It would be best to try to get her in to see a gastroenerologist as soon as possible so she can quit feeling miserable sooner.  I live in the states and I was diagnosed 5/21/2012. My Deamidated Gliadin Abs, IgA was 101 normal range should be 0-19. This would indicate a strong positive for Celiac disease. The nuerologist referred me to a gastroenterologist who decided that instead of doing an endoscopy he would send me to get a genetic test for celiac disease which also returned positive(I hear these tests are very expensive). Anyhow, my point in telling you this is that your daughter probably has a first degree relative who has celiac disease.  That may be you or her Dad or a aunt, uncle, grandarents.

 

Good luck!

[nvsmom]

Welcome to the board.

 

I'm sorry your daughter has to wait so long for a biopsy. That is so very very wrong.  If you need that biopsy, I really hope they hurry her through the line.

 

I agree with txgal, it sounds like a hemorrhoid. they can be quite surprising and turn toilet's water red if it is newly bleeding with a bowel movement.

 

Best wishes to both.

[Celia's Mum]

Thanks, txgal748. I asked her about haemorrhoids and she wasn't really sure if she had or not. Could be internal, I guess. Re the private appt, it's not so much that there isn't availability - for instance, I could get myself a private appt tomorrow most likely. The problem is the private hospitals in our area don't seem to take kids under 16. They simply don't employ paediatric gastros. I have possibly found a bigger children's hosp that has a private dept - it's further away but that's fine.Fingers crossed they come good. The NHS appt a few weeks away is in a great teaching hospital near us and I'm in no doubt would offer a great service. It's the frustration everyone suffers here in the UK - we all have to join the queue, although I do believe the NHS, on the whole, is a remarkable thing and I wouldn't want to be without it! Interesting that you didn't have to have an endo - so it can happen! Daughter and I a bit nervous about that. If anyone else has celiac in the family, it's likely to be me (have all the symptoms and so far DXed with IBS). I'm getting re-tested asap - first test was when I was gluten free. My brother has Crohn's, my dad IBS forever (I think undiagnosed celiac) and my grandmother suffered with so many celiac symptoms all her life, it makes me want to weep she went undiagnosed - or at least never even tested as far as I know. Anyway, I hope you're doing well and things are getting better for you.

 

Thanks nvsmom - this board is certainly a great resource! Oddly, she said the water didn't go red - which may be some comfort and point more to undigested food?? I never saw it. I told her not to flush next time so I can check it! She's quite anxious about things anyway so I'm wondering if it's a case of her 'seeing the worst' when it was just food. I'll be taking it seriously though, and following up. I just hope I can get her an appt sooner rather than later. Thanks for the kind wishes :-)