[BabeBlossom]

I need some advise on Coeliac's testing but I have the equivalent of a short story first, sorry!

My daughter had a temporary intolerance to chicken that started when she was 8 months old that has since been resolved. During this time we also took her off wheat thinking because she was so young it might have been stressing her system too much.
Since then I have tried giving her wheat again and after a couple of weeks we realised she had been grumpy and not sleeping like she was when she had the chicken issue. A month or so later we tried giving her wheat again thinking that being that little bit older may make a difference(she was now 12 months old) and a couple of days later she had the same symptoms so took her off again.
That week she saw a paediatrician and was diagnosed FTT and due to her above history had the Coeliac test. At the time I told the paed she had been having gluten but had no idea they needed to have so much. The test came back negative but she would have only had the equivalent of 1/2 slice of bread/day for around 2 weeks.

She has not had any wheat since the appointment almost 2 months ago. I had her weighed 3 weeks after the appointment and in the 6 weeks since she had turned 12 months she put on almost 600grams(putting her at 7.7kg) this was huge for her! It's now almost 8 weeks since seeing the paed and she has definitely put on more weight and looks like she's gotten taller.

Issues we still have are her frequent runny poos, now 1-3 a day down from 3-5 when on wheat and some pretty bad tummy bloating after eating.
She has only been wheat free not gluten, she has porridge each morning and occasional rye ryvitas and we haven't avoided anything that may have gluten like sauces etc.
The more that I read the more I'm thinking it's Coeliacs and we have done the worst thing possible by taking her off it without testing.

I'm after advise on what you would do.
Ask the paediatrician to redo the test and put her on a full gluten diet and watch her be miserable, not sleep and in pain for the 4 weeks?
Ask the paediatrician for the gene test I only just discovered existed today, and if that comes back positive push for the bowel biopsy to confirm based on this and her history?

Also I'm in Melbourne and have had terrible luck with paediatricians.
Her paediatric allergist for the chicken intolerance was a joke and we ended up seeing a naturopath who specialised in allergies who fixed things and the paediatrician she's seeing now is a professor specialising in ASD that just happened to have the first opening available but isn't very good with all things gastro.
I would love some recommendations for anyone good, I'm in the SE but more than willing to drive to see someone worth it.

[Matthias' mum]

She can have the gene test, which will either rule it out completely, or let you know it may be a possibility in the future. All other testing will require her to be eating gluten for quite a while (I think it is about 2 months).

I have Coeliacs, and our Pead advised us not to give DS gluten at all for the first 2 years, and then it was up to us when we introduced it. I have opted to continue him on a gluten free diet at this stage (our entire household is gluten free anyway). The main reasons for this are that he is petrified of needles, and it would be extremely traumatic for him to do the blood test at this point. It's also more of a hassle to feed him gluten then to avoid it.

We are planning to do the gene test before he starts preschool, and if it's positive, we will have to decide whether to keep him gluten free, or start on gluten and have further testing done. There are new developments with testing all the time, so I am hoping there are ways to avoid the biopsy in a couple of years time.

Unfortunately, there aren't any really conclusive tests for Coeliacs. Even the bowel biopsy can come back negative, but it may mean they just missed it. My sister has just returned a positive test, after negative results a few years ago.

I would base my decision on how sick she gets from gluten firstly, and secondly how well she copes with blood tests etc.

[polly1984]

My ds is very similar to your dd however the paws we were seeing at 7 months advised taking him off gluten then before doing any testing. Ds is now 21 months and are waiting until about November this year to try a gluten challenge and rthen testing so he will be almost 2.5 years before we do this so he is a bit older to handle the stress of the gluten challenge. This plan has been suggest by the paed allergist we are seeing.

So holding off for a bit longer if your dd is now thriving might be an option but maybe ask your paed if they would suggest going completely gluten free in the meantime might help with the diaohera she is still experiencing.

Hope this my help you a bit

Polly

[deejie]

Ask the paediatrician to redo the test and put her on a full gluten diet and watch her be miserable, not sleep and in pain for the 4 weeks?
Ask the paediatrician for the gene test I only just discovered existed today, and if that comes back positive push for the bowel biopsy to confirm based on this and her history?

The minimum gluten requirement for children before the coeliac serology blood test in children is the equivalent of 2 slices of wheat based bread per day for six weeks. If your child was only having porridge and occasional biscuit, perhaps it is not enough. The other thing to bear in mind is that serology tests can be particularly inaccurate in small children, the tTg-IgA comes to mind. The DGP (deamidated gliadin peptide IgA & IgG) is generally considered a better screening test in infants. The tTg-IgA is also unreliable in members of the population with IgA deficiency, although a good quality lab should run an IgA level as part of the Coeliac screening process.

In regards to the gene test, only 1 in 30 people who possess the gene will actually go on to develop coeliac disease (this proportion does increase if you have an immediate family member with the disease). The frequency of HLA DQ2/ HLA DQ8 is quite common in the population as well so as you know it is not a diagnostic test in itself, but works rather well as an exclusionary measure. If you get the gene test first, get the referring doctor to ring the laboratory. Many will accept cheek swabs from very small children instead of a blood sample. It is less likely to produce workable amounts of DNA, but certainly worth a try before the trauma of a venepuncture.

If it were me? I would ask for the gene test first. If that came back positive, I would reintroduce full gluten despite the 6 weeks of misery it would cause and re-test the coeliac serology screen including a DGP. Depending on those results, I would go from there.

I live in Melbourne as well and have had dealings with a couple of allergists, feel free to PM me with the name of the person you saw and I will be happy to offer some alternative names.

Hope this helps, oh and check out of coeliac society website, they have lots of great info on there. Good luck!

[2 Gorgeous Girls]

We stopped wheat within in a couple of months of introducing it to our youngest daughter. On the odd occasion that she steals a biscuit or something similar from another child she will get diarrhoea shortly afterwards and normally get a rash as well.

I've had her allergy tested (negative) but I'm not prepared to put her through 6 weeks of torture just to see the results of a test. It won't change how I feed her and we eat gluten free in our house anyway. I tell daycare that we choose not to give her those foods and for them to do the same. They have seen the results when she's taken someone else's food and now they are a lot more vigilant. They definitely didn't take me seriously at first as we didn't have a diagnosis.

[duckasorus]

Dd 18 months is also dairy free and recently had the tests done, we are waiting on results before changing her diet further.

The reasons we are getting her tested is fair amount of weightloss, gut issues, bowl movements and family history.

Kinda hoping its positive so we have answers to her long term weight loss...

[Cat©]

Another one who advises getting the gene test.

My DS was tested three times for coeliac starting at about 12 months for FTT, two of those three tests were negative, yet the biopsy showed signifcant damage from gluten.

Needless to say the biopsy confirmed what the last blood test showed.

[Carmen02]

Im in melb SE suburbs. If u find a good paed tell me pls lol i have 7yr old with coeliacs and the gastro specialist wants to wait for 17mth old DS is 2 but im thinking of pushing it as his had alot of trouble lately

[BabeBlossom]

Thank you so much for all of the replies, I had been checking on my iphone but it's too hard to make a meanginful reply on it.

To those of you waiting or have waited until your children are older, was this recommended or your own decision? Is there a medical reason for it or did you just feel your little one would cope better being a little older?

Is there a benefit of diagnosing earlier, as in do the 6 week challenge now? My poor baby I thought it was 4 and that was scary enough! She's still so small and is finally putting on weight it doesn't feel right to do something that will affect that even temporarily, but getting definite answers sooner and a plan to go forward would be a relief.

Somewhat silly question (I feel like I'm on such a steep learning curve!) If she has had high gluten foods for maybe a total of 2 months for her entire life would this be enough to show damage during a biopsy? I can understand years of eating it causing noticeable damage, but a couple of months?

Finally for those that put their young child on a gluten free diet did you consult a dietician?
She eats very well but I'm worried we might be overlooking key dietary needs for her age.

[polly1984]

Part of my reasoning to wait for testing is I felt it was unfair to do the gluten challenge while he is thriving and gaining weight, he doesn't sleep with the pain and is just overall miserable the whole time. This was discussed and agree upon by both the general paed and his allergy paed.

We have seen a dietian about his diet to ensure he was getting all the essential nutrient.

My understanding is that 6 weeks prior to the biopsy is enough to cause damage to the intestines. If my DS eats something with gluten now (last tome was a bite of his cousins sandwich) took about 3 weeks for his stomach to settle and sleep properly and begin eating fully again.

Good luck deciding what to do.

Polly