Genetic Predisposition, gluten-free Since Birth -- Now What?

[Anya78]

My 2.5 year old has never had gluten. I have Celiac, as does my father. I worry about the non-typical symptoms of Celiac (including cognitive development issues) that don't obviously point to Celiac, so we have been overly cautious and have never given my son gluten. We did the genetic test and he received the Celiac genes from both me and my husband, which makes him much more likely to develop Celiac. Although, he still might never actually develop it, even with this strong genetic predisposition.

I feel like I need to give my son gluten at some point to see what happens. He's starting preschool soon and I feel like it would be kind of silly to send special snacks to school and make a big fuss over him being gluten-free, if he's never even had the chance to actually develop the disease. But I still worry that it will cause some major, irreversible change in him.

Anyone ever been in this situation or have any advice on what I should do? I am thinking of calling a specialist to see if they will give me advice over the phone. Perhaps if I start him on gluten, I will keep a journal of any physical or behavioral changes and after a certain period of time have him do the blood screening test.

Thanks!!

[flourgirl]

Because of genetics there is a high likelihood that your son may have Celiac. You have started him in a lifestyle without gluten and he is doing just fine. Why take the risk of problems? He may have symptoms and damage that you may never see. If this were me, I would continue the gluten free diet with him, be safe and be sure. Like many others.....how I wish that this information was available to me when I was young. By the time I got a diagnosis, I have had lifetime of illnesses and symptoms that no one could pinpoint a cause.....and my struggle to recover post-diagnosis has been long and difficult. It may not be convenient to keep him on the diet...but it may be a lifesaver. I say, better safe than sorry.

[Kibbie]

My 4 year old daughter was diagnosed at 18 months and she has been gluten free ever since. I now have a 6 month old boy who carries one of the genes for Celiac Disease and puts him at a 40% chance of developing it some day (ant a 60% chance of him not). We have chosen to keep him gluten free until he requests something different, at that point in time we will decide what to do. I figgure at least this way if he does ever develop it he will have grown up with gluten free foods so it wont be a major change for him. His pediatrician is all for waiting till he requests something different.

[swalker]

I'm from the "an ounce of prevention is worth more than a pound of cure" school of thought as well.

He's never had gluten foods so he doesn't feel like he's missing anything and if he takes his own food to preschool right from the start, it won't seem unusual to him.

[Amyleigh0007]

I agree with swalker. I would rather prevent illness then treat it. My 20 month old daughter has never had gluten. I feel like my daughter is not missing a thing. We are a gluten free home and if she grows up only eating gluten free food then she won't know what she is missing. I don't want her to go through the same health problems her brother did.

I don't think it's silly at all for your son to take gluten free snacks to school. You could explain to the school staff that although he doesn't have the disease you are keeping him gluten free so he doesn't develop it. Tell them he is carrying all the right gene for Celiac and he could develop it if he eats gluten. You are being truthful and letting the staff know that they need to be diligent in keeping him safe.

[Pattymom]

My dd was gluten free from 6 weeks old until 2 years. I had taken myself ( and thus her) off in infancy b/c of horrible stinky mucousy poop. She's my 4th and I knew it was wrong adn figured it mus be somehting I was eating. After I felt better, I had the blood test, and was still positive even off gluten for a few months. so we btoh stayed off until 2 when the MD told me to try her on gluten, so we could test her and confirm or see if she "outgrew" it. Well, she has no obvious GI symptoms and the blood test was negative, so she ate gluten. Until at her 3 year check-u we noted that she was basically tapered off in growth. MD was still no concerned, we switched MD and at 3.5 I go th3er re-tested (still negative) and took her back off gluten. She started growing some, then off dairy too, started growign a little more, but now at 1 year off gluten, her weight gain is still really slow and height only minimallly better, and I still have no medical results to prove that she is gluten intolerant. though, we recently did a gluten challenge for 1 month and scope, she developed horrible constipation and a blistery rash on her belly and arm, and was a tantrummy mess. til the scope was fine. The GI is great, and encouraged me to take her back off any way. He said it's healthy diet and if it solves her symptoms stick with it.

In summary, wish I had kept her off and went with my instincts like I did when she was little and knew no other way. Overall, she is great about it, though since she clearly remembers eating some gluten, she sometimes wants it. As far as other kid, she's nor in pre-school, but at her suzuki violin group when we were checking snacks, another little girl came up and asked if we food allergies too, and they had a little bonding talk about what they couldn't eat and how there mom's had to check. food allergies are not so uncommon that even kids seem to accept it in out experience. Even better, at the next group, another little girl who was bringing snack wanted to make sure mine could eat it so she has her Mom check and make sure. My dd was thrilled to have the snack and have a friend who made the effort for her ( I pointed it out with great praise).

good luck with your choice, I know it's tough one.

Patty

[Alison]

Both my daughters have been gluten-free since the womb -- they are now almost 5 and 3. We are a gluten-free household and I agree with many people that have said already that the inconvenience of having a child gluten-free outweighs the risks associated with giving him gluten. I strongly believe that I am preventing possible health problems that have been associated with gluten and that are seen in many kids these days -- speech delay, attention problems, stomach aches, moodiness, crying easily, diarrhea, constipation, growth delay, night terrors. Even diabetes gets diagnosed before celiac when it could possibly have been prevented. Don't worry about any stigma attached to having your child gluten-free in school or anywhere else -- do what is right for the child!

[gfb1]

Because of genetics there is a high likelihood that your son may have Celiac. You have started him in a lifestyle without gluten and he is doing just fine. Why take the risk of problems? He may have symptoms and damage that you may never see. If this were me, I would continue the gluten free diet with him, be safe and be sure. Like many others.....how I wish that this information was available to me when I was young. By the time I got a diagnosis, I have had lifetime of illnesses and symptoms that no one could pinpoint a cause.....and my struggle to recover post-diagnosis has been long and difficult. It may not be convenient to keep him on the diet...but it may be a lifesaver. I say, better safe than sorry.

um...

'high likelihood'?? without any information about the childs' other parent (even carrying the MHC haplotype) is insufficient information to determine anything.

celiac is NOT a simply inherited trait -- regardless of what the 'gene testing' companies would like you to believe. i have no idea where the other poster received the 60:40 information.

it is MUCH more complex than that. to make an informed estimate of genetic risk; one would need to have information regarding the other parents symptomology, blood tests, etc. and info from any other siblings.

i also understand your desire to 'know'; and to have your child not worry about being singled out in school. in this case; you could start with simple allergy testing for gluten.

there is very little good data regarding the initial contact with gluten among celiac children. and, frankly, i would like to know beforehand if exposure could cause diarrhea/vomiting. if the kid is 'embarassed' by being gluten-free, there are worse things... this would also save time/worry when dealing with school nurses/administration -- because you know that there will always be inevitable mistakes.

personally; i would (and DID) give my kid a slice of bread for lunch and see what happens.

[dadoffiveboys]

My fourth son (of 5) was gluten-free only starting at about 2. We were worried a little because he wasn't talking 'normally' it seemed. When we took him gluten-free, within about 2 weeks his speech picked up dramatically. I would say if you have a strong family history (like I do) of gluten issues, I would definitely keep them off gluten. A 'trial' of gluten though is interesting to see what happens. It turns out I haven't had problems with trials because we managed to get 'cross-contaminated'. It turns out though that my second oldest son- his symptoms were fatigue and asthma - that it's almost IMPOSSIBLE to tell he had a gluten reaction until he starts feeling tired much later - so you really need to do it in a controlled fashion ONCE and see what changes occur. Each of my five boys has completely different reactions to gluten (unfortunately.. they are all negative).

[Alison]

The problem with just giving a child a piece of bread to see what happens is that it can take days, months, even years for symptoms of gluten intolerance or celiac to manifest. During that time, there could be damage happening that are not obvious gastrointestinal problems like vomiting or diarrhea. It could be subtle behavioral or neurological problems.

I am curious what "gluten allergy" tests gfb1 recommends? A child cannot be tested for celiac or gluten intolerance if they haven't been eating gluten. It could take months or even years of eating gluten to test positive on the current accepted medical tests for celiac. A test for wheat allergy (IgE antibodies) can be done by an allergist, but this is a whole different thing. What is a simple gluten allergy test?