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Coeliac monitoring
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#1 lizabeth

Posted 21 December 2012 - 06:35 PM

For those who have children with Coeliac - how is it monitored, and by whom?  My daughter was diagnosed six months ago and we are not sure if we are successfully following the gluten free diet. We are confident regarding reading food labels but are not sure if she is ingesting some gluten through cross contamination. She sometimes complains of tummy pains and seems very tired; she never had gastric issues before diagnosis.  Also, her hair seems to be falling out!  One patch of hair is very short, and strands come out with her hairbrush.  I have read that this could be due to low iron levels (her iron was found to be low normal at the time of diagnosis). We weren't given any information about follow up at diagnosis, but have booked her in to see our Paediatrician to get some more information. For others, what does monitoring involve (repeat bloods, repeat biopsy??), and who is it done by (ie Gastro-enterologist, GP or Paediatrician?).
Thanks in advance for any info.

Edited by lizabeth, 21 December 2012 - 06:37 PM.

#2 Carmen02

Posted 22 December 2012 - 06:36 AM

when my 8yr old was diganoised we went to a dietitian that specialised in coeliac's and had a few visits with her and we have follow up appointment with the gastro specialist every 6mths, I dont know if his going to keep it up but we just had a check up and have another in 6mths! DS does see a paed but thats for other issues.

#3 Tired Feral too

Posted 22 December 2012 - 08:36 AM

I agree with seeing a dietician. They will assist you in knowing exactly what has gluten and what does not and ensuring a balanced diet. Also joining the coeliac society in your state, they can give you heaps of information and support.
I have Coeliac disease too, so I monitor the kids as I monitor myself- bloods done every 6 to 12 months checking all levels of everything. Every 3-5 years, when I am not feeling the best, I have a colonoscopy and biopsy done just to double check if the gastro thinks it is a good idea.
If I wasn't a Coeliac myself I would probably ensure I was still seeing the pediatrician and/or the gastroenterologist at least every 6 months.

I would be concerned about your daughter still not feeling well and her hair falling out. I would certainly go to a GP at least to get bloods done again to check her levels and see a dietician to check where things are up to.

In regards to cross contamination- I have a separate toaster and bread board as I found crumbs from the toaster used for normal bread were making me sick. I also needed my own spreads, butter, etc so I did not get any crumbs. And all of this was just for toast. Cross contamination can be a real issue whenever GF and normal food are being prepared in the same kitchen.  
It may take time to understand the limits you need to go to, but I'm sure you will work it out.

#4 brazen

Posted 22 December 2012 - 08:52 AM

we have not really had any. i contacted the public paed surgeon 12 months after rora's diagnosis and never heard back from  them. i have asked our GP to check her blood levels once since diagnosis.

#5 FeralZombieMum

Posted 22 December 2012 - 09:12 AM

They are supposed to do a follow up biopsy 12 months later. This is important as they can check if the diet is being followed. It's also important for older people - in case they are one of the ones that have refractory coeliac disease - 'which is a rare condition in which the symptoms of coeliac disease (and the loss of villi) do not improve despite many months of a strict gluten free diet.'
This tends to happen in adults that have had untreated coeliac disease for many years - so it doesn't occur in children.

My DD initially went to the dietician for a few visits (Dr organised a care plan so we could claim some $ back on Medicare.)

I took her back to the Dr about 12 months later to enquire about the follow up biopsy, but our GP didn't think it was necessary. My DD does react to trace amounts of gluten - so we can be confident we aren't making mistakes. She did have blood tests done, one was the Coeliac Screening blood test. She then had another lot of tests the next year because she still hadn't grown and the Dr checked for other things.

I guess I could have pushed for another biopsy - but I would rather the surgeon spend their time doing a biopsy on another person that suspects they have coeliac disease. I was just grateful my DD was seen pretty quickly in the public system, so I don't mind not having that follow up biopsy...at this stage.

#6 Star276

Posted 22 December 2012 - 09:05 PM

I have had follow up appointments 12 monthly with 2 different Paed Gastroenterologists for my DD.  I had TTG levels and other bloods done prior but neither would agree to a follow up biopsy.  The Public guy (Head Paed Gastro at Childrens Hosp) said he never did follow up biopsies and then I saw a private Paed Gastro who said the same. My DDs bone density was severely osteoporotic and is now back to normal after 3 years of very strict gluten free eating.

#7 lizabeth

Posted 29 December 2012 - 02:04 PM

Thanks for all your replies - all helpful.  My DD was diagnosed in the public system (Because I work there - The Children's Hospital, Westmead, Sydney). I tried to contact the Gastro who did did the biopsy but they were all closed over Xmas, so we got an appointment with our local Paediatrician. He has ordered repeat coeliac screening blood tests and iron studies (as she was low). He weighed/measured her and looked at her hair. He said that sometimes hair is lost/dies as part of the chronic disease process, and that healthy hair should now grow back, so I was encouraged by that. It will be very interesting to see if her TTG levels etc come down; then we will have a better idea if we are keeping her diet gluten free, or not. We'll continue to see him for monitoring.  The only issue was the cost - OUCH!  She's worth it though original.gif

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