Coeliac disease in children

Hi smile

I took my 6 1/2 yr old twin dd to the doctor on Tuesday as we were still concerned of her tiny frail size. At the doctors her weight was just under 15 kg. She still has no appetite and looks very pale and mostly has black bags under the eyes. She also tires very easily. He agreed with me that she is too tiny and we did a fair few blood tests. We tested for full blood count, iron, Vitamin B12, Vitamin D, Coeliac disease and a fair few other things.

He wrote down that she is failing to thrive. He said that from hearing all her symptoms he thinks it may be coeliac disease. Can anyone give me any information on Coeliac disease. Also if your children have it, What were there symptoms? How were they diagnosed? and what was the treatment plan?

My dd also has perthes disease( a condition that has caused her hip not to grow and form correctly) which causes her a lot of pain with walking. At the moment one of her legs is a fair bit longer as on one of her hip joints hardly has a ball on it. We have been told that we need to wait till she stops growing and then she will get a full hip replacement sad The doctors also think she has already developed arthritis in the joint.

All her results should be back early next week so I'll be heading back to the doctor then. He said most likely she will need to see a paediatrician and also a dietician.

Thankyou for reading and I appreciate any help anyone can give. smile

gosh sorry she's going through so much.
My cousin has it, he wasn't diagnosed until he was maybe 12 or so, once they found out that's what it was I think they just changed his diet and he's fine, just has to be careful of what he eats. Sorry don't know what symptoms he showed apart from being a super fussy eater- because his tummy would of been majorly sore.
heres a link that you might be able to get more info from
good luck with it all
Coeliac nz

Thanks nadz27 for replying smile

As much as I don't want her to have it I do want to know whats making her unwell. She used to eat fairly well and has always been small, her birth weight was 1.9kg, but she was looking healthy. Now I need to coax her to eat every mouthful sad

Thankyou very much for the link I'm going to have a read now. smile

Hi my father was diagnosed with Coeliac disease at the age of 80, he's just turned 81. He has lost a lot of weight, was feeling tired and so went to see his gp. My mum passed away nearly 3 years ago and that's when he started to lose weight. We thought it was because he was grieving and not eating properly. Anyway the gp did heaps of blood tests, for diabetes, cholesterol, iron, etc. His iron levels came back extremely low, to the point he was severely anaemic. He had to start iron tablets and get B12 shots. He also sent dad for a colonoscopy and gastrosocopy to see if there was any internal bleeding. That's when it was discovered he had Coeliac disease. Unfortunately he also has enlarged lymph nodes in his abdomen which is being monitered. They don't know if it's caused by coeliac disease or he has lymphoma.

He is on a gluten free diet, which at his age has not been easy. He has to have more blood tests this month to see if his iron levels are improving.

If you google coeliac disease you can find heaps of info and what foods to have and what to avoid.

Hopefully this is the reason why your DD is not thriving and with a gluten free diet and possibly iron tablets and B12 shots she will pick up soon. smile

Thanks mumof2gorgeousgirls for your reply smile

I'm very sorry to hear of your dads health problems sad I hope when he has his blood tests this month his levels are improving.

Thanks for your information.

Sorry to hear about your DD.
I have coeliac disease and so does the quite a few of my family.
There are heaps of Gluten Free foods in the Health Food isle at Woolworths and Coles and such a wide variety that she wouldn't need to feel that different from the rest.
My whole family eats GF just to save the bother of cooking things in two lots.
Just another tip for sucsessful home cooking (not packet mixes) you mix two different brands of flour eg: White wings and Orgran and you will turn out with a product that is no different from non GF Food.
When we have guests in for dinner I always cook GF as I have no non GF products in the house, and they say you wouldn't know the difference.
It really is only a matter of changing a few things and life can go on as normal.
As for her Perthes disese I was diganosed with it at 5 and had to wear a brace for several months, go and see another doctor as it probably will be too late to try and eliviate the problem if you wait until she stops growing, yes she may need a Hip replacement later on as I am facing 2 in the near future, but there are things you can do to help it from getting worse at such a young tender age, so horrible the pain and suffering she must be going through, feel extremely sorry for her.
Chiropractic also helps immensley

Thankyou Darrylandallie for replying smile

My dd has had her problems with her hips since birth. They originally thought she had Congenital Hip Displasia so at 6 weeks went into a brace which she then wore for the next 9 months. Then the specialists said that it was obviously not working so gave the go ahead to remove it. I will have a chat to our doctor about seeing a different specialist as I really want to ease her pain. I hope everything goes well for you when you have your 2 hips replaced.

Thanks for your advice about foods and coeliac disease. When you were diagnosed what tests did you have and what sympoms did you experience?
Thanks smile

My little girl was diagnosed with coeliac disease on her 3rd birthday. My husband also has it.

DD had loose bowel motions from when she started having complete meals so about 18 months. Initially doc thought it was lactose intolerance. When it did not resolve she had further blood tests which showed the likelihood of coeliac disease. We then saw a paediatrician and she had a gastroscopy and biopsies to confirm the diagnosis.

Although we did not initially recognise these symptoms, she was also low in iron because of the disease and so she was quite pale. She also had quite a distended tummy and was quite thin. Always had lots of energy though and never complained about tummy aches, although that said, she was never very interested in her food.

Since going on the gluten free diet in December she has put on a couple of kilos and is so much more interested in her food. So happy that she is putting on some fat reserves and that her overall health will improve.

It does take a little while to get used to the diet and it is more expensive, but there are great products out there and you can eat really well, may be with a little extra planning though. We also saw a dietician, which I would definitely recommend doing.

Best of luck to you and your daughter smile

Thanks Tutu & Lulu Yeah I was really hoping they wouldn't need to do invasive checks. But it would be good to finally have some answers. I'll let you know how we go smile

3littlecritters I really appreciate your reply. I hope your little one continues to improve.

Hello,
I was diagnosed 10 years ago, first I had blood tests, then had to have the light put dwn for them to take a biopsy. I had to have blood tests every month for about 2 years, than had the light put down 4 times.
My symptoms were that I was always in pain, thought this must be normal, whenever I ate food with gluten in it I would have terrible diarroea and always felt generally unwell with headaches.
Not sure if this helps.

Thanks Darrylandallie your last post was helpful smile

Hi - I really dont know much about Coeliac's personally but I worked with a lady who was diagnosed in her early 20's. She was also very small and thin, and had been little all her life. Anyway the doctors told her it is possible for it to flair up later in life, sometimes as a reaction to something. So I guess my point is that maybe your DD has only fairly recently developed it (if thats what the test show!!) and that is why her eating patterns have changed.

Fingers crossed you can get her eating again, it's a lot of information to take in, but at least you know which way to go from here.

smile