We are just back from a rather disappointing first hospital visit with a paediatrician for my 10-year-old daughter. She doesn't have the typical presentation of a child with coeliac as in fact she has been persistently overweight ever since she was a small child despite many attempts to get her weight under control. She has never really had normal 'poo' but has diarrhoea about three times a day. Our GP requested that she be tested for coeliac as I myself have Sjogrens Syndrome (there is a strong correlation apparently between the two conditions and I have a problem with eating wheat in particular and have been advised by own consultant to be gluten free). When the test came back she had a level of 462 on the TTG test which I understand is high?
The doctor didn't seem to think she would be coeliac as she doesn't have other symptoms but has requested a gene test be done for DQ2 and DQ8 and for endomycial antibody. She did say that my daughter would then have to have a biopsy done but I thought there was a general move away from doing this for children?
She is still eating gluten for now and will do until we can get all this sorted out. I am feeling quite glum about the whole situation as I've obviously passed on the autoimmune problems to her (although I know I have no control over this now) but I don't want my little one to have to face all the diagnostic struggles that I have had to face over the years.
Any thoughts or advice at this stage please would be very welcome
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SjogiBear
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I'm not an expert (just a coeliac) but in my opinion a TTG level of 462 is very high. To put this into context, I have had TTG test results from two different hospitals over the last few years. One used a range of under 10 as being a 'normal' result; the second used a range of under 20 as being normal. Each hospital in the UK will be slightly different because of the laboratories they use.
I strongly suspect that I was a coeliac as a child, but unlike your daughter I had none of the classic symptoms (I was just a weedy, pale kid with brain fog, dental enamel defects and very smelly poo!). Having diarrhoea is such a classic symptom - so be persistent with the doctor and do whatever you feel is in your daughter's best interests. I don't have any experience with getting a child diagnosed; however if you're willing to trawl through the NICE guidelines on Coeliac Disease, then NG20 are the ones to Google.
By the way, do keep her on gluten foods until all tests are completed, to avoid any false negatives.
I can't add much more to what Reagalbirdy says, but wanted to say that as parents we all feel responsible if we pass on a debilitating condition to our loved ones. So far my son appears not to have coeliac disease, but it could happen at any time. If it does come to pass that he suffers from the disease then I'll be sad for him, but I'll not feel guilt. One of my parents (I assume) was my link to it and as their son I'd rather have the life that I have now than no life at all. (And life free from gluten, I now appreciate, is a better life in so many ways that I'm glad I'm gluten free.)
My son knows he's more at risk as his dad is a coeliac, but I know he doesn't in any way resent the fact. So please don't beat yourself up about what's happened. It's nobody's 'fault'.
The symptoms of coeliac disease are many and varied. Adults can be overweight at diagnosis, so I would think that it's quite possible for a child to be the same.
It's not unreasonable to feel glum at the moment, but you appear to be well on the way to getting a diagnosis. Coeliac UK also has information on diagnosis etc if you need it.
My 12 year old son didn't have any symptoms until suddenly becoming ill last September when he caught giardia. The giardia cleared with antibiotics but then we also received a coeliac result as they had included the TTG test in all their investigations. Apparently giardia can bring underlying coeliac to the surface. He now runs a Facebook page to help other kids with coeliac find food and restaurants to try. facebook.com/willsgfway . I know that he has benefitted from finding out that he is not the only kid with coeliac so I hope that it might help your daughter to know that she's not the only one. (BTW I was told that a TTG result of over 100 was considered diagnostically conclusive evidence of coeliac. Will's was 137 when diagnosed, then 13 6months later having been living on a GF diet.
Good luck to you both - it does get easier when you settle into a routine.
Thank you everybody for your kind replies. I will keep you posted about what happens regarding the further testing. She is due to go for blood tests for the gene testing next Wednesday but I have no idea how long it will be before we get any results as the paediatrician seemed to want to wash her hands of my daughter's care. She will also be tested for thyroid problems.
Amanda - thank you for sharing Will's FB page - what an amazing young man to set up something like that for other children! I have shown Lara and she's very impressed (BTW my parents still live in your general area and I used to work in T myself so it's very useful to know GF places around there!)
Yes that is extremely high level my daughter was 300+ and it has taken ages to get her levels down by sticking religiously to gluten-free (she is very sensitive to trace amounts). With a reading that high we were told that if her DQ2 and DQ8 came back positive then there would be no need for a biopsy as they only need positive combinations in 2 sorts of tests. So we never had to do the biopsy (she was 7 at the time). Good luck with it and I hope you don't have to go through the biopsy.
My daughter is 10 now I also struggle with her weight and have to watch how much she eats as she seems to put weight on very easily. Her sister eats twice as much and is skinny as anything??
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