What Would You Do?

[beebs]

My whole family are gluten free, me because my reactions are severe, my two kids are on a trial and then will most likely do a challenge, my husband is because we all are and has found he reacts badly too, so needs to go for testing, and one of my twins is just because everyone else is.

My newest baby is about to starts solids - I really don't know what I should do. I am thinking two things here - is it kind of silly to make him gluten free just because? The problem is that my reactions are so severe to be considered life threatening - so I don't have any gluten in the house ever.

Arrrghhh! What would you do??

[pricklypear1971]

When he's old enough to eat out, let him eat gluten.

Otherwise, you're risking everyone else's health if you bring it in the house.

And when he's that little, it's a huge risk to you - what he touches, touches you!

[eatmeat4good]

Without a doubt if I had a baby, that baby would be gluten free.

Gluten is not necessaary for life.

You are not harming your baby in any way if you never feed him gluten.

You want to be able to kiss and nuzzle your baby.

Your baby needs you to kiss and nuzzle him way more than he needs gluten.

If I got life threatening reactions like yours there would be no question about the decision that we would both always be gluten free.

If something is potentially harmful to you, the baby doesn't need it. He needs a healthy mom...always.

If he wants to eat gluten when he gets his own place...then so be it...but I would still make Holiday dinners gluten free.

[beebs]

Thanks guys - I hate second guessing myself like that!

[Skylark]

Gosh that's hard. Other people are offering you very kind advice, but you do need to be aware of current research suggesting that introducing gluten around 4-6 months while still breastfeeding helps prevent celiac. The idea is that it trains his immune system that gluten is OK. Could you husband possibly give your baby small amounts of a gluten food and wash him really well? If there is no way to give your son gluten without endangering your own health, obviously you can't worry about it. Ending up in the hospital is far worse than taking your chances about him being celiac and who knows what we'll think 10 years from now?

Anyway, I've copied and pasted from the full article, since you probably can't get it.

H. Esch et al. The PreventCD Study design: towards new strategies for the prevention of coeliac disease European Journal of Gastroenterology & Hepatology

Issue: Volume 22(12), December 2010, p 1424–1430

Importantly, many studies have focused on the effect of gluten intake by infants on the development of celiac disease [25–31]; however early exposure to gluten has never been identified as an independent risk factor in the development of celiac disease. The study of Norris et al. [32] suggested a ‘window of opportunity’ for lowering the risk of celiac disease by introducing gluten into the child's diet at the age of 4–6 months. This period in infancy is thought to be important for the development of the immune system and also for the discrimination between tolerance and intolerance to specific nutritional antigens [32,33]. Data from the Swedish celiac disease epidemic, which arose in the mid-1980s, suggest that celiac disease may be prevented by adjusting infant nutrition [30,31]. In the case of this epidemic, the incidence rate of symptomatic celiac disease among children below 2 years of age increased 4-fold, and declined equally abruptly approximately a decade later. Potential contributing factors were investigated, with the main cause subsequently established as changes in infant feeding practices [30,31]. Prior to the epidemic, it was recommended nationally that the introduction of gluten into children's diet should be postponed from the age of 4–6 months, the interval during which breast-feeding is commonly discontinued. At the same time, although notably unrelated to this, the gluten content of commercially available cereal milk drinks and porridges was increased. The decline of the epidemic was preceded by a reinstatement of the earlier recommendation, and to reduce the gluten content in commercial infant foods.

The Swedish experience suggests that a gradual introduction of gluten, if possible while breast-feeding, will reduce the risk of celiac disease [30,31,34,35]. Moreover, a meta-analysis, which includes the Swedish findings, confirms the protective effects of breast-feeding at the time of gluten introduction [36]. Additional studies also suggest that infant nutrition may have a significant impact on the subsequent risk of developing celiac disease, and other autoimmune disorders [32,34,35,37]. These findings corroborate the need to develop prevention strategies, particularly as the current guideline recommends the introduction of gluten only after 6 months [38].

[sandsurfgirl]

With any child you shouldn't introduce gluten containing foods or any major allergens until they are one year old. Many don't follow that rule, which is sad because there are an awful lot of babies on reflux medicines and whatnot who don't need to be sick.

If you have a history of celiac, absolutely wait to introduce gluten! Don't take the chance with your baby. Then when the baby is older, you may decide to go full boar with gluten to find out if he has celiac. Or not.

It's risky for you and the child. It's not worth it. Leave the gluten for later.

You need to go very slowly with solids since you have this history in your family. Stay away from the foods on the major allergens list for a long time. Do egg yolks and whites separately. I think the whites are the most allergenic. It's been awhile since I dealt with this with the son. He's 7 now and he has celiac. Was so sick as a baby and toddler.

[beebs]

Hey Skylark, that is why I asked - because I had read something that said the same thing. And now they are saying the same thing about high allergen foods - introduce nuts, eggs etc at 4 months and there is something like a 60% Reduction in anaphalaxis!

He isn't breastfed - due to my autoimmne diseases I can't. So already he is on the backfoot in terms of allergies and celiac...

[sariesue]

What does the pediatritions think? Perhaps you should discuss this with your child's dr and see if he has found skylarks study to be true, and if he feels it's important enough for you to find a procedure that works for you to be able to introduce gluten. Personally, I would introduce it during the window where it is suppose to be helpful even if you don't ever plan on allowing him to eat gluten in your home. I would want to introduce gluten as a single food NOT as someone else suggested waiting until he is older and letting him have gluten while out. If you do introduce it as part of a larger meal, it will be harder to identify what he reacted to or if he just picked up a bug at daycare/preschool/life. To keep you safe I would have your husband prepare and feed the baby the gluten, then immediately have bath time. Plus I would get the baby foods that are meant for single use, preferably ones that are heated and served in the same throwaway container and I would dedicate one spoon to the gluten foods and keep in separate from the other spoons. In my mind the other advantage of introducing gluten at the younger age is they are less mobile. To me this means the child can't be spreading gluten around the house the way a toddler can.

[mamaw]

Dr Allessio Fasano is doing a study on this .. Google him & you can read for yourself...Honestly, I have NEVER heard of anyone dying from lack of wheat!!!!!

[kitgordon]

I would keep the baby gluten free until he is old enough to try it on his own. With your family history, he is at risk for celiac in any case, and there are lots of people (me, for instance) who started on wheat as infants who developed celiac anyway. And if he is celiac, I think it could make him very ill unnecessarily.

[domesticactivist]

You have a life threatening reaction and there is good cause to believe that wheat and grains in general really aren't that good for people in general. No way would I introduce gluten early, and maybe not a all.

I would take the GAPS approach to introducing solids if I had it to do again.

[Skylark]

Hey Skylark, that is why I asked - because I had read something that said the same thing. And now they are saying the same thing about high allergen foods - introduce nuts, eggs etc at 4 months and there is something like a 60% Reduction in anaphalaxis!

He isn't breastfed - due to my autoimmne diseases I can't. So already he is on the backfoot in terms of allergies and celiac...

I think you need advice on current thinking from a pediatric allergist! Any chance you can get a referral to one in your area? Someone at a teaching hospital who is up on the latest research would be ideal.

[tarnalberry]

I'm sorry that meds you are on are preventing you from breastfeeding! (I'm presuming it's meds for the autoimmune conditions, since the conditions themselves are almost never a cause for avoiding breastfeeding - though most docs are woefully underinformed on the subject.)

The current research suggests introducine gluten early to kids with a risk for it. But the research is... wonky, imho. It suggests between 4 and 6 months - a time when kids don't need to be on solids at all. And I don't recall it having a group that didn't start on it until well after a year. So I'm unimpressed.

There is ample evidence that suggests, in the absence of family food sensitivities, waiting to introduce allergenic foods makes no difference. (And separating out food allergies from reflux-inducing foods is far more complicated and starts way before introducing solids.) But you're not in that sitaution, and most people I know still recommend the 1-year mark. That said, if you're waiting for a year under the hopes that baby will be able tocommunicate with you - well, there's no guarantees there. (My 18mo old still doesn't talk. With words, anyway.)

I waited until 9mo or so, but we do allow some gluten in the house. If we didn't, I would not alter our diet just to bring in gluten for a baby. Plenty of families around the world don't get to eat wheat, and they're fine. You could consider introducing it outside the house when baby is older, but I'd definitely let someone else do it (IL's introduced DD to cheerios before I might have otherwise...).

good luck!

[beebs]

I'm sorry that meds you are on are preventing you from breastfeeding! (I'm presuming it's meds for the autoimmune conditions, since the conditions themselves are almost never a cause for avoiding breastfeeding - though most docs are woefully underinformed on the subject.)

At the risk of TMI, I have severe nipple vasospasm (that was my first clue that anything was wrong autoimmune wise) and after my first child was born and trying to feed for 3 months in agony a lactation consultant referred me to a rheumy which is where all the autoimmune stuff started to click together. Also after this baby I developed a bad infection that turned systemic, I ended up on two kinds of anti bs for 10 weeks and lost about 35 pounds and couldn't eat, walk or stand. Ended up getting a uterus infection as well - so ill. So basically I started to express, but I just couldn't keep it up - plus the medication wasn't good for breastfeeding and I was only getting between 3-10mls. Just didn't work out. Not that it usually does for me as the vasospasm is always there and bad and I always get infections after having babies - this was the worst by far though. I have no doubt that I get infections because of the autoimmune stuff.

My GP is gluten intolerant and believes that gluten is bad generally, so she wouldn't think twice about the baby being gluten free.

[tarnalberry]

Ick! I also had a vasospasm issue, which was partially due to my daughter not nursing well - she would compress my nipple with her tongue against the roof of her mouth. The physical irritation was really what was primarily setting off the issue. We worked with an OT, a PT, and an MD who specializes in breastfeeding medicine to try to address the issue. I was very fortunate that, at three months, my daughter "got her act together" and stop compressing so much. (I gave her until then to develop the ability to nurse better, or I was giving up, as I was tired of crying through nursing sessions and just wanting to give her to someone, anyone after nursing her. It was horrid. You have my sympathies!) The vasospasm issue continued for another few months after that, but with the help of extra magnesium, heating pads and keeping otherwise warm and other non-pharmaceutical interventions, we have been able to get past it. (There is at least one med that they can put you on, that is safe for breastfeeding, to address vasospasm, but most cases are contributed to from the baby's end as well.)

But adding infections, meds, and no real opportunity to get your supply up sounds like a whirlwind of circumstances that would keep the most dedicated from being able to breast feed! Congrats for giving it a go; that's awesome that you tried so hard!

[Di2011]

My gut is telling me you should go the gluten-free route however my brain suggests it may not be the best bet. What do you do when the 8-9 year old gets gluten at school, friends house etc and either 1. reacts violently or 2. thinks its all good so goes for more next time, and again, and again.. and then there is a problem or 3. point number 2 and never reacts????

If you have a good doctor talk to the clinic about testing in their rooms. Especially the first few times. Otherwise go and sit in Emergency and feed gluten there. This would cover point 1 (violent reaction) and point 2 (nasty reaction somewhere out of your control at some point in the poisoning process). And how do ever figure out point 3 (no problem) if you don't figure out points 1 & 2.

I'm not a doc etc and have not thought this through to any great length but thought my first thoughts might be worth putting on the table despite how crazy they may seem (to you others or to me after some contemplation ) I have a 9y/o and know how hard it would be to face the problem and have thought long and hard about having a 9y/o who is probably gluten intolerant because avoids too much gluten in his diet etc etc etc.. Behaviours I've always had. I don't want him to get to 38y/o to fall in a heap.

[beebs]

Ick! I also had a vasospasm issue, which was partially due to my daughter not nursing well - she would compress my nipple with her tongue against the roof of her mouth. The physical irritation was really what was primarily setting off the issue. We worked with an OT, a PT, and an MD who specializes in breastfeeding medicine to try to address the issue. I was very fortunate that, at three months, my daughter "got her act together" and stop compressing so much. (I gave her until then to develop the ability to nurse better, or I was giving up, as I was tired of crying through nursing sessions and just wanting to give her to someone, anyone after nursing her. It was horrid. You have my sympathies!) The vasospasm issue continued for another few months after that, but with the help of extra magnesium, heating pads and keeping otherwise warm and other non-pharmaceutical interventions, we have been able to get past it. (There is at least one med that they can put you on, that is safe for breastfeeding, to address vasospasm, but most cases are contributed to from the baby's end as well.)

But adding infections, meds, and no real opportunity to get your supply up sounds like a whirlwind of circumstances that would keep the most dedicated from being able to breast feed! Congrats for giving it a go; that's awesome that you tried so hard!

I tried that heating pads, nifedapine and evening primrose oil. The LC said our attatchment was perfect, used to go and see her every couple of days and she was flummoxed. But I had it really bad even when I wasn't bfing - so I think that just made it worse. I used to think it was normal - it was only when I went to see the rheumy did I find out that not everyone has agonising pain:lol:

[ravenwoodglass]

Personally I would let him be gluten free until he is older or perhaps let him have a bit at a sitters or grands house. I don't know that much about the study that was done but introducing gluten between 4 and 6 months sure didn't prevent my children, or myself for that matter, from becoming celiac. I would have given anything for my son not to have developed issues in infancy, when he basically stopped growing, and wish in retrospect that I hadn't listened to the doctor who told me to go ahead and give him gluteny cereals at a young age.

[tarnalberry]

I tried that heating pads, nifedapine and evening primrose oil. The LC said our attatchment was perfect, used to go and see her every couple of days and she was flummoxed. But I had it really bad even when I wasn't bfing - so I think that just made it worse. I used to think it was normal - it was only when I went to see the rheumy did I find out that not everyone has agonising pain:lol:

While I'm incredibly sorry that you had to find out about the autoimmune issues that way ('cause that's a physically *and* emotionally hard way to go about it), I'm glad you got into someone who could start figuring out what was happening!

[Roda]

Personally I would let him be gluten free until he is older or perhaps let him have a bit at a sitters or grands house. I don't know that much about the study that was done but introducing gluten between 4 and 6 months sure didn't prevent my children, or myself for that matter, from becoming celiac. I would have given anything for my son not to have developed issues in infancy, when he basically stopped growing, and wish in retrospect that I hadn't listened to the doctor who told me to go ahead and give him gluteny cereals at a young age.

It didn't prevent me or my youngest son either from developing celiac. For my youngest we introduced cereals early at the pediatricians recommendation because of his bad reflux. Ironically I fed my youngest barley cereal because the rice and oat cereal made him break out in a rash on his head. No rash with the barley. He was breast fed until 16 months and neither him or I was gluten free. I was inadvertantly gluten light though due to all the things I eliminated in my diet. He was around 14 months old when I started having my first issues(I had added all the eliminated things back into my diet by then but didn't make the connection). In hindsite I feel it was gluten all along that caused him his bad reflux that went on to cause reactive airway disease. He had to be on meds and neb treatments till he was 3 years old. He had a period from age 3-5 1/2 that he seemed normal and was off all meds. He even had a blood test at at 3 almost 4 years old that was negative(right after I was diagnosed). At 5 1/2 is when he started having issues and was blood tested 5 months later. Some of his symptoms I didn't realize were gluten related. His test was positive and he has been gluten free since.