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Subject:
From:
Steve Butcher <[log in to unmask]>
Reply To:
Steve Butcher <[log in to unmask]>
Date:
Wed, 27 Feb 2013 09:59:16 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

*TL;DR:* There is not yet clear consensus on what to do, but genetic
testing is a good idea, and if you are going to give your kid gluten, doing
it while breastfeeding may reduce the risk of developing CD.

-The details-
*

*
*
Original post:
*
My wife and I both have Celiac disease and have a baby boy due in late
April.  We plan on always having a gluten free house, but would like advice
on if/when/how to introduce gluten into our kid's diet.  Has anyone crossed
this bridge?  We will talk to our doctors about it, and probably a
nutritionist, but would like to know what other people would do or have
done.

Our kid will obviously have the genes for Celiac, but that does not mean it
is certain that he will  develop the disease.  If he doesn't need to be
gluten free, then our first instinct would be to let him eat wheat when we
are out at restaurants or when he is over at friends' houses.  That would
make social situations easier, and he would get to enjoy the things we no
longer can.  However, a big part of me wants to keep him totally GF,
because I had stunted growth, dental problems, and felt bad through much of
my childhood until I was diagnosed at 18.  Do we introduce wheat when he
starts eating solid foods and do the blood tests regularly?  Wait longer to
introduce wheat?  Never introduce wheat?  What do you guys think?

*Response Summary:*
Wow, I got about 50 responses in one day!  Lots of people are interested in
this and many have been in similar situations.

There seem to be 3 schools of thought:
1- Never expose the child to gluten, treat him as Celiac from birth.
2- Delay gluten exposure until the child is 1-2 years old (some even older).
3- Introduce gluten in small amounts while breastfeeding, at around 4-6
months (or between 6-12 months from some sources).  Breastfeed for a full
year.

I had responses from parents, doctors, and nutritionists that recommended
each of those 3 options with varying degrees of confidence. Because
understanding of Celiac disease in particular, and autoimmune and allergy
issues in general, is rapidly evolving, there is not a clear consensus.
 More recent studies are making a lot of people (including the
American Academy of Pediatrics) lean towards Option 3 because it seems to
provide some reduced risk of Celiac, but with a whole host of (expected)
caveats.  However, all 3 options were recommended to me with a seemingly
high degree of confidence by at least a few people, including medical
professionals.

See
http://www.nytimes.com/2013/02/24/opinion/sunday/what-really-causes-celiac-disease.html?pagewanted=1&_r=1
<http://www.nytimes.com/2013/02/24/opinion/sunday/what-really-causes-celiac-disease.html?pagewanted=1&_r=1>
for
a very good discussion of the research.  This article was recommended at
least a dozen times.  It is one of the best-written medical news articles
I've ever read.

Many people recommended genetic testing, which we plan to do (contrary to
what I said in the original post, there is a chance we won't pass on the
genes).  My wife has had genetic testing, but I have not (I was diagnosed
before there was a genetic test), so I will do it as well if insurance is
cooperative.  We might look to see if there are any studies that we could
participate in to help with all of the ongoing research (anyone know of any
in the DC area?).  If our kid doesn't have the gene, we will just have to
find other things to worry about :)

We have not yet decided exactly which option we will go with, we need to
discuss it a lot more with each other and with our doctors, and the gene
test may change things.  We already planned on breastfeeding, so we will
try to do that for a year as lots of people recommend, and introduce a wide
variety of foods while breastfeeding.  Whether that includes gluten, we
will see...  We just hope that breastfeeding goes smoothly!

Here are some of my thoughts after reading lots of reasoning behind each
option:

1- Never expose the child to gluten.  I am comfortable with this.  I lean
Paleo anyway, for a number of reasons (read Tim Ferris or Rob Wolf books
for most of them).  I know I would not feel guilty about endangering my
kid's health in any way.  It could make social situations a little harder
in the future, but kids can find anything normal, especially if they are
healthy and happy.  It just means we have some parenting to do - our kid
will be picked on at some point whether he eats school lunch or not.  I've
gotten through over a decade of GF, including college, and don't feel that
it held me back whatsoever.  I haven't felt awkward about food in a social
situation in a very long time.  Occasionally frustrated, but even that is
rare.  Another plus that some people mentioned is that the kid's pallet
won't be used to wheat, so they won't crave or care about it.  If they do
eat some when they are older, they will probably feel bad and it won't have
much appeal to them - parents of Paleo kids say this is usually the case.
 With new research in other autoimmune diseases, cognitive issues,
behavioral issues, autism, etc starting to point at inflammation levels
being involved in some way, a low inflammatory diet seems like a good idea
for other reasons.  Our kid will definitely not have the issues my wife and
I have if they never eat gluten.  No one anywhere is arguing against lots
of vegetables...

2- Delay gluten exposure.  Recommendations ranged from 1-3 years, a few
even more.  The main thought is that you don't want to stress your kid's
system when they are younger.  The other big plus is they will be able to
verbally tell you if they are feeling bad, so it will be easier to tell the
flu from a gluten reaction.  This option has less appeal to me, but it is
understandable in the face of so much uncertainty.  However, it would be
hard to feel good about giving my kid something that is effectively
poisonous to me.

3- Introduce gluten at the same time as other solid food, and while
breastfeeding.  Several areas of research are pointing in this direction.
 At least one population study discussed in the article above provides some
decent support.  Research into gut flora and the flora and immune system
supporting qualities of breast milk provide strong theoretical reasoning.
 As always, many correlations seen in the types of studies done to this
point do not have clear causal relationships (eg, do the differences in gut
bacteria in Celiac patients vs non-Celiacs arise from or cause Celiac?).
 This option has intellectual appeal to me.  I have enough education in
biology and statistics to understand why doctors are taking the evidence
pointing in this direction seriously, but certainly don't understand all of
the nuances.  I have not seen any discussion of 'what then?'.  Do you need
to keep gluten in the diet regularly for the protection from Celiac to be
effective?  If the kid then eats gluten free with us until they are 5, will
the beneficial gut bacteria and immune antibodies still be present?  So,
this option seems good, but I would want to talk to doctors about it in
more detail.  Again, it would be hard to feel good about feeding my kid
something that makes me ill.

I hope this helps some of the other people in similar situations!

Thanks for all the responses,
Steve

*Please provide references to back up claims of a product being GF or not GF*
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