biospy on a 3 year old

[samark Profile]

hi my daughter has CD diagnosed by blood test results and has been on a gf diet for the last two months. We had our first hospital appointment the other day and the doc wants her to get a biopsy in sept so she has gone back to eating gluten. I was wondering if any other children had this done at a young age????

[Anniewoman Profile]

My daughter was diagnosed at 13 months. she had been suffering from vomiting and pains for about 4 months or so. Anyway she was diagnosed via blood test as having CD and immediately went on the GF diet. She has never been sick since and is 5 now. She goes to our local hospital once a year for check ups and dietition meeting and about two years ago we went to Crumlin to discuss her biopsy. The consultant told us that as she has been thriving since her gf diet began he sees no need to put her through the biopsy therefore keeping her GF. It is now left up to us if we want her to have a biopsy. He also said that they would not do the biopsy before she reaches the age of 12 anyway, which seems to be the contrary to what i have read on this forum He has left the decision up to us but i dont think we will have it done as she is so well since starting the GF Diet so to me there is no doubt in my head that she has CD. Sorry if that is not much help.

[samark Profile]

Thanks Anniewoman... crumlin seem to have a different opinion to temple. he said he wants her to have it and didnt tell us she can have it later. My husband has coeliac so when we got our daughters blood tested her number was nearly 400 but she didnt have any symptoms. she would be knocked out for this procedure and we are wondering if it is necessary to put her through that...

[Bella3005 Profile]

Hi samark,
my daughter had her biopsy done (in Crumlin) just after she turned 2.
We were also wondering if it was necessary to put her through that but in the end we decided to go ahead.
Our daughter had her blood test done with positive result 2 months before but we were told that 10% of coeliac bloodtests are incorrect especially at very young age.
We were thinking about her in later life doubting that she mightend be coeliac because she didn't have the gold standard diagnosis and basically wanted to be sure for her and went ahead with the procedure.
Honestly, there was no bother on her.
She was knocked out in ward while I was there (this was only hard for me, not her) and we had her back awake after 20 minutes.
Within two hours she was disharged and there was no bother on her after.

[Anniewoman Profile]

Thats great that she had no bother after her biopsy. How did you or she find the gluten diet before she had the biopsy. Was she very sick as this is the part that i would have trouble being a part of. I dont think i could go back to watching my daughter getting sick 2/3 times a day and being so sleepy. She is such a happy child i dont think i could watch her change...

[Bella3005 Profile]

Hi Anniewoman,
between blood test and biopsy we gave my dd the gluten rich food in the morning only so she could have afternoons without problems and most importantly good nights sleep (that was her main problem before the blood test).

[pjns Profile]

hi my daughter has CD diagnosed by blood test results and has been on a gf diet for the last two months. We had our first hospital appointment the other day and the doc wants her to get a biopsy in sept so she has gone back to eating gluten. I was wondering if any other children had this done at a young age????

My daughter has been diagnosed with CD in the last few months. She initially went for the camera down her throat because of regurgitation problems and by chance she took a biopsy and the results show that she is showing early signs on CD so She is now on a GF diet. It's a bit of a shock because no other members in our family on either side have it so a bit of me is not fully convinced?? Maybe because she doesn't show any other signs! They said if my daughter wants to be retested when older they will talk to her about it but for now keep her on the diet. I just found it all a bit strange why question it later in life if she seen signs now??

[Bella3005 Profile]

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[5mcdonag Profile]

My daughter got very sick shortly before she turned 3 with a flu. She lost about 7 lbs so I kept an eye on her and after a few months, she still hadn't put up weight. She showed no other symptoms except lack of weight gain. Doc tested her. Her bloodtests were through the roof. We kept her on gluten for another month before she did the biopsy in Tallaght children's hospital which also proved positive. Doc suggested we all get tested which we subsequently did. My other daughter just turned 2 when she got the biopsy done based on her positive blood tests. She had zero symptoms and was also positive. Since they went gluten free, they both are thriving. I think the biggest issue is whether you want to be certain or not. My doctor was adamant that you don't just put somebody on a gluten free diet on an assumption before testing for coeliac. There are no "early signs" of coeliac. You either are or are not. I think for the future you should test your child because then you are certain for life. There is no wondering. There is no other way to be certain. You should get an appointment quickly because of her age. My daughter was done within a month of diagnosis by blood test and my other daughter within 6 weeks (cause the doc was on hols for two of those weeks). Dr Shoana Quinn did my girls in Tallaght Children's Hospital - my doc referred me straight to her - she doesn't distinguish between public and private patients, rather, brings them in based on the urgency. Young kids are generally considered urgent because they are failing to thrive because of the lack of diagnosis. Another couple of months of gluten is better than a whole lifetime of never being certain. I think you should follow the other mom's suggestion of gluten in the mornings. I wish you luck with it. As for the hospital: it sucks as a parent but the kids are very flippant and forget very quickly. My girls are now 4 and 6 and neither remembers the hospital visit. They were doted on and got new pjs and slippers for the day to make it fun. I really think it's important to get the correct full diagnosis before embarking on the gluten free life. But best of luck with it all. It really is easy once you get the hang of it.

[5mcdonag Profile]

[quote]My daughter has been diagnosed with CD in the last few months. She initially went for the camera down her throat because of regurgitation problems and by chance she took a biopsy and the results show that she is showing early signs on CD so She is now on a GF diet. It's a bit of a shock because no other members in our family on either side have it so a bit of me is not fully convinced?? Maybe because she doesn't show any other signs! They said if my daughter wants to be retested when older they will talk to her about it but for now keep her on the diet. I just found it all a bit strange why question it later in life if she seen signs now??[/quote]

I just wanted to say I find it odd that they say she is showing signs - you are born with coeliac disease and either you have it or not. Whether symptoms appear is irrelevant. You may want to get a second opinion. As for no family history - ask whether anybody had stomach problems, ulcers, miscarriages, etc. In the past, coeliac disease was not so often diagnosed. I have many family members who were tested after my girls were diagnosed and have found out that all those years of suffering with digestive issues, etc. could've been spared if they had the right diagnosis.

[pam100 Profile]

Hi Smark

My daughter had a biopsy done at 21 months, she was so sick i never thought to question, i just wanted her better. With in a matter of weeks on the GF diet she was quiet litterally a different child . We went to crumlin and obvisouly she had been fasting so when she came around from the anesthisia she was starving, and we had been told there and then she was Coeliac, the nurse went to get her food, and she comes back with normal toast doh!!Is your daughter phisically sick?
Pam