Testing children for CD

[kickingfrog]

Testing children for CDJ

Pediatr Gastroenterol Nutr. 2008 Oct;47(4):428-35.

Antigliadin immunoglobulin A best in finding celiac disease in children younger than 18 months of age.

Lagerqvist C, Dahlbom I, Hansson T, Jidell E, Juto P, Olcén P, Stenlund H, Hernell O, Ivarsson A.

Department of Clinical Sciences, Pediatrics, Umeå University, Umeå, Sweden. [e-mail]

Abstract

OBJECTIVES: The aim was to investigate age-dependent serum levels and occurrence of elevated celiac disease (CD)-related antibodies in young children, to define the optimal serological procedure when selecting for small intestinal biopsy.
PATIENTS AND METHODS: Included were 428 children with biopsy verified CD (median age 16 months; range 7.5 months-14 years) and 216 controls (median age 2.7 years; range 8.5 months-14.6 years). Immunoglobulin (Ig) A antibodies against gliadin (AGA-IgA), tissue transglutaminase (tTG-IgA), and endomysium (EMA-IgA) were analysed.
RESULTS: Increased serum AGA-IgA levels were found in 411 of 428 CD cases, tTG-IgA in 385 of 428, and EMA-IgA in 383 of 428.
In the control group, 11 of 216 had increased levels of AGA-IgA, 5 of 216 of tTG-IgA, and 8 of 216 of EMA-IgA.
In CD children younger than 18 months, elevated AGA-IgA occurred in 97% and elevated tTG-IgA and EMA-IgA were found in 83% of the cases.
Conversely, in CD children older than 18 months, elevated AGA-IgA occurred in 94%, and elevated tTG-IgA and EMA-IgA were found in 99% of the cases.

CONCLUSIONS: In children older than 18 months, both tTG-IgA and EMA-IgA are sufficiently accurate to be used as a single antibody marker, whereas a large proportion of younger children with CD lack these antibodies.

Therefore, when selecting children for small intestinal biopsy, the detection of a combination of AGA-IgA and tTG-IgA is optimal for identifying untreated CD in children younger than 18 months.

PMID: 18852634 [PubMed - indexed for MEDLINE]


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Baby blood test

Posted by Lucy on 13/8/2009

GF board

My baby son is 1 soon and he is being tested for CD tomorrow.
Anyone had a little one tested before? (blood test not biopsy)Where do they take the blood from? Is it the same as an adult?
My 2 year old had a blood test but he had some cream to numb his arm. I am just worried how I will cope, I cry when he has to go for his immunisations but this is something we have decided to put him through so I suppose I feel a bit guilty.
I guess I am looking for some words if support - thanks



Posted by Lucy - N.London on 13/8/2009
I too have had my younger child tested for coeliac when she was younger (her older sister was diagnosed at 1 year old). If they do not offer the cream to numb the pain there is also a spray which is instant numbing so I would recommend to all parents whose kids are nervous of the blood sampling to have the spray, it's all over in an instant, provided you can get them to sit still.... and no sitting around for 30 minutes dwelling on the inevitable!



Posted by Peter (Kates Dad) on 13/8/2009

Kate was tested aged 15 months. EMLA cream on back of hand for 1 hour, with bandages to stop her pulling them off. Looked like a boxer she did.
Needle into back of hand, dad blowing bubbles to distract her.
2 weeks later, tested positive, then onto biopsy.

If i can give you one word of support, Kate has no recollection of this episode of her life whatsoever


…Kate was ill for 3 months prior to her blood test. We have been to the GPs 8 times to be fobbed off with teething. In fact one GP exmained her tummy and said it was normal. The paediatrician spotted it from the history she took, the rest confirmed what she already knew.
Kate was classic peadiatric Dx of CD, weight loss, atrophied musculature, pallor, vomiting, delayed dentition, lethargy.

Within 2 weeks of going GF, we had our little Tricky back

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Re: Baby blood test

Posted by Linda (Fife) on 13/8/2009

GF board

Have the surgery given you EMLA cream or similar to numb the skin? If not phone them this afternoon & ask for some & also ask to speak to whoever will be taking the blood & find out where they want the cream applied - back of hand, over wrist or elbow crease (probably first 2 areas as veins are deeper in infants due to their cuddly chubby layer!). I know it might be distressing but try to view it as a means to an end - a few minutes discomfort in ensuring his health is not compromised in the future. Make sure he has plenty to drink beforehand - being underfilled makes it more tricky to get a decent sample

Hope it goes OK

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Blood Test children

Posted by Charlotte, Oxford on 13/8/2009

The blood tests are very unreliable at this age and only rarely pick up cases of CD in children, usually those already very ill.

University of Chicago answers this frequent question at
www.celiacdisease.net/symptoms

Who should be tested for Celiac Disease and how often?

"Children need to be eating wheat or barley-based cereals for some time, up to one year before they can generate an autoimmune response to gluten and have the blood testing."

Make sure the AGA (Anti gliadin antibodies) test is also done. This is a less specific test for wheat problems that is useful in the very young (and done by some better-informed gastro-paed centres for this reason). It is an old, very cheap test and you will have to ask for it specifically if it is not on the list (as a lot of GPs do not know of its usefulness in young children and tend to say 'oh that's an old test we don't do anymore'). A positive AGA, even if other tests are negative, would certainly suggest that CD is developing in the very young child of a coeliac parent.

As I have probably mentioned before, HLA typing would be the next step if all tests are negative.

This gives most through guidance for at risk asymptomatic children. Note that blood testing is not considered very useful in the under 3s.

www.naspghan.org/user-assets/Doc ... 4_jpgn.pdf

Evaluation of the Asymptomatic Child in an At-Risk Group
It is recommended that asymptomatic children who are first-degree relatives of an individual with confirmed CD.... undergo testing for CD beginning in childhood (Figure 2, Box 1; Table 2)[at end of article]. It is recommended that testing occur after 3 years of age after the child has been on an adequate gluten containing diet for at least 1 year before testing…………


Posted by Charlotte, Oxford on 13/8/2009
Not all centres do it - eg here in Oxford I believe it would be automatic in such a case (and free). It is worth having done even if you have to pay for it at eg TDL:

www.tdlpathology.com/home




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[kickingfrog]

Diagnosis of a child, magic spray/cream

Diagnosis for my 3 year old
Posted by Gayle on 12/9/2006
GF board


I was diagnosed with CD 9 years ago and DD (3) has been having ongoing diarhorrea for 9-10 months. With the obvious link and displaying symptoms is am sure she has CD. She is on a very low gluten diet as she doesn't like bread/sandwiches and I obviously don't want to feed her cakes and biscuits all the time.
She has a a neg blood test but when I increased gluten in her diet for a repeat blood test she showed an increase in symptoms.
I've just had the hospital on the phone wanting her in on Friday am for a scope and biopsy but I'm really reluctant to put her through it. She is petrified of going to the docs or hospitals as she's had several attempts at getting blood from her. I know there is a very small risk of the GA but any advice on being able to convince the consultant to diagnose her on symptoms and family link would be very much appreciated…….



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Posted by Sarah on 12/9/2006

Sophie was diagnosed at the age of 4, and was also petrified of doctors and needles. When she was in the hospital she wouldn't let anybody near her, not even to have her blood pressure done, because of this they gave her some gas to make her sleepy before putting in the cannula for the GA.
If I were you, I would take the opportunity of diagnosis by biopsy, if you push for it on symptoms alone, doctors may question it in the future.


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Posted by Karen on 12/9/2006

My daughter (then 7) told the anaesthnatist that she didn't want a pre-med and insisted that her teddy must go with her. She was offered gas instead of the pre-med. She was given a mask with an attachment that blows up a balloon. She had great fun trying to blow up the balloon whilst gently going to sleep. Whilst asleep, the anaesthnatist put the canula in her hand. When she came round, her teddy had a bandaged hand too. The canula was taken out once she had eaten some rice krispies and they had stayed down for 10 minutes or so.


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From Sarah

….Sophie's cannula had to be taken out as soon as she came round, because when she saw it she freaked out and tried to pull it out herself.

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Posted by Louise O'Leary on 12/9/2006

…I have a two year old little girl who for about four months in a row (every day) was getting sick three or four times a day and had severe diorrhoea. After bringing her to the doctor numerous times and being told that she had a viral infection we finally went to Casualty where they took blood and found that she was 95% coeliac. They told us to go away and start feeding her gluten free food and see how we got on.
The new diet worked wonders for her and within a couple of days she had come on so much it was unbelievable.
However a few months later the hospital rang to say that in order to diagnose her 100% she would have to have a biopsy done which would mean putting her back on normal gluten food for three months before getting it done.
My husband and I realised that we could not do this to her. She had only just started to trust us with food again and the thoughts of going through three months of watching her getting sick every day was something that we did not want to do.
We explained this to the hospital, and they were not a bit happy. We have told them that we know it needs to be done but we want her to be a bit older so that she understands why we have to do this to her.
She is now still on the gluten free diet and is doing really well and this is how we are going to stick with it for a few years to come.


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Posted by Karen


At your daughter's age, the endoscopy would be done under general. It is very quick and she won't remember the procedure at all. Whilst doing the endoscopy, they can check for other potential problems like ulcers and cancer so I think that it's a good idea to have it done.
For blood tests, I would recommend using EMLA cream (a prescribed local anaesthetic cream) and using the arm rather than the back of the hand - it hurts less on the arm anyway. Also, go to a large phlebotomy clinic where they are a dab hand at doing kids and also have more adults to assist if necessary.


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Taking blood ...
Posted by Lucy

The 'magic cream' does work - but we prefer the 'magic spray', which seems to be new (to our local childrens ward, anyway).
I've found that waiting 45 minutes for the cream to take effect simply increases the tension for my (now 10 year old) daughter. It has always been very difficult to get her to relax enough to take the blood, and the spray is instant, which means we're in and out much quicker. Less time for tears, tantrums and fainting ...


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Spray

Posted by Karen

The spray sounds great. What is it called and can you get it from the GP on prescription to take with you?


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spray
Posted by natasha mum to short CD child on 12/9/2006

www.ucl.ac.uk/ich/homepage


Cryogesic® spray (Ethyl chloride)

Ethyl chloride acts as a local analgesic (pain relief ) when sprayed topically onto the skin. It has no anaesthetic properties but rather works as a vapo-coolant. A thin film of liquid is sprayed onto the skin, which makes the skin cold and less sensitive as the liquid evaporates. It works very quickly (in a few seconds) but the effect wears off quickly too as the skin warms up again in a few minutes. It can be very useful for children who are allergic to other topical anaesthetics, or for those who get very upset when cream is applied before tests. To apply the spray follow these instructions:
Hold the can on its side a few inches above the skin.
A fine tube can be attached for more accurate application.
Press the nozzle gently and let the fluid drip onto the skin. It will feel very cold and a thin white film will appear.
It is easiest to spray a flat, horizontal surface, so if you are spraying your child’s tummy, he or she will need to lie back.
The needle should then be inserted within 30 seconds of spraying the area.
Do not repeatedly spray the same area as this may cause frostbite and pain.

works for leila - she ahd growth hormone testing yesterday adnd did really well with the spray and getting canula in - worst was the glucagen injection in leg. and trauma today remiving the plaster! oh and the vomiting/nausea when her sugar levels droppped.
endoscopy was ok - they ahd to use vein in her foot tho.



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[kickingfrog]

From Pam in Brum GF board
Has anyone any experience of children's biopsies under general anaesthetic?



From Natasha

it is very straight forward. if you know where are good places to find a vein to inject then say so; also ask for emla cream beforehand (or the instant anaesthetic spray). my daughter only has suitable veins in her foot!
also she didnt "wake up" enough to go home until next morning but that is unusual - same thing happened with her brother when he had an MRI under sedation. i think they have some unidentified syndrome meaning they overreact to sedative (midazolam). but they were both fine, just sleeping beauties for 18-24 hours!!! leila did wake up briefly, enough to drink water then vomit it up all over the hospital clown... funny ho ho. then she went back to sleep til next morning ....
if this does happen they will get a drip of fluid to prevent dehydration...
take plenty of favourite books, gameboy, vidoes or whatever they like for the pre-op bit where they might have to wait around --and something for you too!!


From Jane U

....Sophie had a biopsy ....under general anaesthetic when she was 3. I too was very apprehensive and may have settled for the blood test diagnosis if I hadn't been pushed by the gastro. Anyway it went unbelievably well - especially as she is not an 'easy' child.The staff were all very relaxed and made a real effort to communicate with her and us. I found the nursing staff very supportive and they seemed to understand that it is hard for parents to watch their child being anaesthetised and then waking up afterwards. The biopsy was over very quickly and she woke up asking for a drink and food. I was able to be with her in the recovery room when she woke up - it was nice to be able to promise her that before she 'went to sleep'.
There was inevitable a lot of waiting around so we took a bag of books/toys but there were loads on the ward too. I took magazines/books and snacks for me and GF snacks for her after the biopsy. The gastro came to see us before we went home and said although they need to wait for the biopsy result he was in no doubt that it was coeliac.
There is a book for young children about going into hospital which may be helpful in preparing your child. We did try and prepare Sophie for the biopsy talking about the hospital, wearing a gown, going to sleep while the doctor looked at her tummy etc...


From Charlotte, Oxford

My children had them done aged 9 and 10. No problems - lots of "magic cream" before the injection and it's such a short procedure the GA is only very light (many adults have no sedation at all for the same procedure). If the day surgery ward in Birmingham is anything like the one here in Oxford you will find it full of children with far more serious conditions/operations.
The main hassle is that, if they are being done at the end of the day they might get grumpy and thirsty because they haven't eaten/drunk. So it's worth ascertaining when they can be expected to be done. Paediatric day surgery wards like to get all the patients in early so that the fasting can be controlled and since these routine endoscopies are not priority procedures they can be put to the end of the list...
...... You might need help getting them back to the car/taxi: both of mine behaved like comic "drunks" on the way home (they were done at the end of the day). Then they were very hungry!


From Jules

....My daughter (then 7) had one in the summer. It was fine - I think it helped that we explained exactly what was going to happen and she understood that. The staff were superb - very reassuring. The only hiccup we had was they couldn't find a vein to put the shunt in for the anaesthetic but they have always had problems finding veins in Emily. In the end, they had to use gas to make her go to sleep which was traumatic becasue she had already gone through 3 attempts at having a needle put into her so by this time she was panicking - on reflection I would insist next time that they go straight for the gas - at least it would be all done quickly. I was allowed to go into the pre-op room with her whilst they "made her sleep" and also when she had woken up, I could go into her.
It might me worth chatting to your children and ask if they would prefer the gas or a needle to "knock them out" (Check with the hospital first if they have a choice!)
Other than that, it really was ok and Emily soon bounced back after - I think we were allowed home about 1 1/2 hours after she came round.

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[kickingfrog]

Posted by Karen on 1/5/2012

... in reply to "Re: Anyone experienced negative blood test but positive biopsy for coeliac (especially in young child?)"




We didn't find having our daughter biopsied all that bad. We arrived at the hospital about 7:30AM and were walking out just before Noon. The staff were very friendly and made the whole thing quite relaxing and even rather fun for our child. There was a television for each bed with children's programs on it. She blew up a big balloon on a machine to put her to sleep (her choice because she didn't want a pre-med). She woke up to find that the staff had put a gown and hat on her tddy and teddy had his own ID bracelet just like hers. Soon after waking, she had some rice krispies, then she was checked over and then we could go. All in all, I think that having a tooth out at the dentist about that time, was much more stressful for her than the biopsy