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Hello
Today I posted a question about possibly introducing my 3 year old to gluten for the first time and asked for input both on timing and strategies for testing (as I have celiac). Many people have responded with helpful advice and some facts and here is a synthesis of that information. Thanks so much to everyone who responded to the post--everyone was very very helpful.
1) First, this dilemma is not as uncommon as I expected. This appears to be a fairly important consideration for many people who know of little clear medical direction on the question.
2) The first step is to have her gene tested; one option is Enterolab at www.enterolab.com ($174). If she doesn't have the genes to predispose her to celiac (DQ2 or DQ8), then it is safe to allow her to eat gluten.
3) As for introducing gluten if she does carry the predisposing genes, I had read 4-6 months was a good time (See the end of this email for a note that the study I read may apply to children with Type 1 diabetes), but many respondents have read other studies that waiting until 12 or 24 months is preferable. At least one person said that celiac symptoms are easier to identify in the 1-2 years range. Another person added that kids won't remember the gluten foods as well at age 3 if I have to pull the plug than if I wait until she is older (8 or 9) to do a trial.
4) Some people suggest not introducing gluten unless it becomes an issue (e.g., school, bday parties, etc) or only outside the home. Others say don't introduce it at all b/c it isn't necessary to eat and not as healthy as some alternatives.
5) As for what to try if doing a gluten trial, one person suggested allowing her foods most easily replaced by GF products such as waffles, cookies, etc. and not goldfish and other items more challenging to find a good substitute. That way, should she have to return to a GF diet, it will be a smoother transition.
6) As for testing after a gluten trial, one person's doctor told her that prior to age 6 a neg blood test is inconclusive because of frequent false negatives. Another person mentioned that her diet may still be very low in gluten given that I cook GF meals at home and this may make it difficult to get good test results.
One person addressed many different perspectives in her response and it was so detailed that I have copied the substance of the message here.
"Dear Tammy

I am very interested in this topic - although it was not possible with my 
children - my son was 10 when he was diagnosed (asymptomatic) after my own 
diagnois. How forward thinking of you to have done this (mainly people are 
thinking about this with children aged 1). Personally I think you have done 
the best thing to reduce the risk of CD.My conclusions are based on 3 main 
reasons:

1) Limited research (mainly from Italy where they are most interested in 
this issue*) which suggests that CD treated before the age of 2 is linked to 
fewer autoimmune conditions in adulthood (ie a GF diet at age 2-3 is 
protective).

2) The epidemiology: CD is almost unknown in countries where young children 
do NOT eat wheat (eg Indonesia, Japan) and yet the genes for CD do exist in 
these populations (albeit in smaller numbers) and these populations do eat 
some wheat.  It seems entirely reasonable that children who eat mainly rice 
during the years that their immune systems are developing most (1- 3) are 
less at risk of gluten-related illnesses later in life.

3) The fact that cases of CD appear to be 'increasing' here in the UK also 
suggests that the change in diet (more wheat and gluten in a child's diet 
now than 30 years ago) may be factor. Logically a 'late-and-low' gluten diet 
would perhaps help prevent some cases.

Finally, a child CANNOT get CD while not eating gluten.  If you believe, as 
I do, that their immune system might cope with it better if introduced older 
and in smaller amounts, it is entirely reasonable to do this. Incidentally, 
the research suggesting introducing gluten at 4-6 months is "safer" than 
after 6 months related to a specific at-risk population of children with the 
genes and Type 1 diabetes in the family.  It has not been replicated in 
"normal" populations and there is the suggestion that, as with breast 
feeding, it may only be protective for a few years and that the children 
still develop CD later.

I would also do the following: introduce gluten in small amounts and keep 
her diet low in wheat during her childhood if she has the usual coeliac 
genes -  in the UK I would first get genetic haplotyping from a company like 
TDL (I know it costs more in the US) - she may have less risky genes than 
you.

*I posted the following recently on the UK's Gluten-free Message board:

"I have posted before about the need for research into the possible benefits 
of delaying gluten introduction for infants particular at risk (ie children 
or siblings of coeliacs with susceptible genes). Medscape recently referred 
to very interesting new research being done by the Italian coeliac expert 
Professor Catassi (et al) on the protective role for delayed gluten 
introduction. It is not yet published (the findings are still confidential) 
but suggests delaying gluten introduction [ie at a year or later] may reduce 
the incidence of CD at least in the first few years of life. This is the 
first study to actually look at introducing gluten at this later age in a 
general cohort of coeliac (rather than T1D) families so should be worth 
looking out for. It also reinforces again the importance of finding out your 
baby's haplotype before deciding when to introduce gluten."
Thanks so much everyone. I hope the summary is helpful.
Tammy in Northern VA


      

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