Author Topic: Help me make a decision about keeping DS gluten free!  (Read 2704 times)

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Offline Mashi

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Help me make a decision about keeping DS gluten free!
« on: April 21, 2009, 18:39:57 pm »
Hi all
Some of you know from other threads and PMs that I have been keeping DS gluten free.  My original aim was until he was one year old, but as he is milk and soy intolerant I am finding it SOOOOO incredibly hard to cook for him. He really doesn't get much by way of finger foods that have a good enough texture for him to chew AND that are things he will actually eat.

My reason for keeping him gluten free is because my mother had celiac disease and I watched her go through so much suffering from being so ill her entire life that I am just paranoid that my DS will also have celiac. I guess I just have it in my head that if I hold off until he's one, it will minimize the chance of him having it, although the dietician he has seen for his MSPI has told me that this is incorrect. I just can't decide if I believe her or not.

My sister has 3 children, none of whom she kept gluten free, ever, and they are all fine. Two of her LOs were dairy intolerant but not were soy intolerant also.  So, she thinks I am being ridiculous and just making more work and misery for myself and son.

I have tried him on oats and he went INSTANTLY constipated, but it was Ready Brek and only after 3 days did I notice on the side of the box that it is calcium fortified and clearly, right in front of my nose says on the box "May contain traces of milk." I was so angry with myself, but decided that was likely the problem. I tried him again on oats this week, twice, and he's been fine - pure, plain, natural oats, nothing added, in a factory that does not contain any milk or soy so no cross contamination.  Oats always used to be on the list of gluten-containing grains, but recent years have discovered that it is not the oat that contains gluten but likely cross-contamination from fields and factories where wheat is grown/produced. Hence trying oats first.

LO can't eat rice or potatoes, either. Rice **INSTANTLY** constipates him so badly that he ends up taking three or four days of crying to get a tiny bit of poop out. Rice cakes are fine, must be because they are mostly air, but any other form of rice is a no-no. Potatoes are the same. So it limits us even further!

I was looking at getting him some gluten free bread this weekend, but here is the ingredient list:
Water, Tapioca Starch, Rice Flour, Potato Starch, Sunflower Oil, Yeast, Dextrose, Psyllium Husk Powder, Humectant (Glycerine), Dried Egg White, Stabilisers (Hydroxypropyl Methyl Cellulose, Xanthan Gum), Calcium Carbonate, Maize Flour, Salt, Citric Acid, Emulsifiers (Polyglycerol Esters of Fatty Acids, Mono- and Di-Glycerides of Fatty Acids).

Compared to regular white bread:
Wheat Flour, Water, Yeast, Salt, Vegetable Oil, Soya Flour, Emulsifiers E481, E472e, Preservative Calcium Propionate (Added To Inhibit Mould Growth), Flour Treatment Agents Ascorbic Acid (Vitamin C), E920

And I just think that by keeping him gluten free, I am chucking him full of other junk.  Is it really worth it.

My DH is really of little help when bouncing ideas off because he really leaves this stuff up to me, because he doesn't ever want me to feel that he pressured me into choosing to change DS's diet when he knows so little about food allergies.  So, he is comfortable with whatever I choose.  But I still need to hear some opinions on whether you all think I am being ridiculously cautious to a fault, or if I should just go on and give the poor little guy a piece of toast!

And if I do give him some toast looking at the ingredients list, should I give him the additive-filled gluten free bread, or some normal bread? 
« Last Edit: April 21, 2009, 19:16:57 pm by mashimaro »

fifibobandmore

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Re: Help me make a decision about keeping DS gluten free!
« Reply #1 on: April 21, 2009, 18:48:56 pm »
That is a hard choose looking at thelist of ingredients normal bread is not suitable because of the soya, what super-market do you shop at? Tesco's have a free range and there braed although it doesn't taste or look very appetitign is gluton and dairy free and doesn't contain soya either it is expensive. I have just binned my DD's bread wrapper so I cant tell you what is in the ingredients but once I have bought her a new loaf tomorrow I will list the ingredienst fro you. I personally would try him on gluton products and if he shows any sign of reaction then I would go back to gluton free in a heart beat. It is hard to choose what is right for our LO's but you will follow your mothering instinct no matter how hard people try to change your mind and tell you it is OK to introduce gluton. Sorry if I wasn't much help I don't know what to say other than what I have already said

Offline KathrynK

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Re: Help me make a decision about keeping DS gluten free!
« Reply #2 on: April 21, 2009, 19:00:07 pm »
My cousin's dd has recently been diagnosed with coeliac disease at the age of 18mo. No one in our entire family or her dh's family as far back as anyone can remember has/ had it so we have no idea why lo has got it, it's just one of those things.
I guess if the gp says he is at no more risk than the next baby, and waiting till he's one won't make a difference, then just try it. Try a simple Shredded Wheat or something for breakfast and see what happens. You know him so well and know how he reacts to certain foods, that if he has a reaction you will spot it instantly.
Gluten free bread is vile, bears no resemblance to bread I know and love (and miss!  :P) so personally I would go for the ordinary stuff, or why not try some different crackers or muffins/ crumpets/ pitta, etc?
Big hugs from me, it must be so hard to try to make the right decision xxxxxxxx
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Offline Mashi

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Re: Help me make a decision about keeping DS gluten free!
« Reply #3 on: April 21, 2009, 19:13:24 pm »
Thanks Alison - the ingredient listing above is Tesco Free From range, it's the only online supermarket that I can pull up images and ingredients on. Other brands may be slightly different but I assume more or less the same.  I know the texture of the gluten free bread is a bit ick, at least it was back in the days when my mom ate it - but that was 15 years ago when there was only one brand on the market and so I can assume it's changed a bit.

I guess I have it in my head from reading somewhere at some point in time that the celiac gene can lie dormant in the body and when gluten is introduced it can trigger it. But, by waiting until one year, there is a good chance the gene will lose its ability to react and therefore eliminating the chance of celiac being a problem. I know that I haven't explained that properly as far as genetics goes, but does anyone know what I mean, or ever read anything along that line or am I a nutter?!

Offline Mashi

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Re: Help me make a decision about keeping DS gluten free!
« Reply #4 on: April 21, 2009, 19:18:06 pm »
Oh - right, just noticed that on the "regular" bread I've listed there is soy flour, but that was just a random Warburton's bread, many brands do not contain soy flour, I've just chosen a poor example to include here. At least I think so anyway, back to check other brands of bread!

fifibobandmore

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Re: Help me make a decision about keeping DS gluten free!
« Reply #5 on: April 21, 2009, 19:25:58 pm »
No your not a nutter, asthma is a genetic problem in my family so far it has appeared in the last 3 generations in the first born  to the next generation and everyone in my side of the family have hayfever and most of us have suffered from or are still suffering from excema. I completely know what you are talking about, genetics are a weird thing to understand

I have a gluton, soya and dairy free bread recipe somewhere I am trying to find it so I can try my DD on that bread. Once I have found it I will make a loaf and tell you how it tastes and list the ingrediants and how to make it so that you could try your DS on it

Offline Mashi

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Re: Help me make a decision about keeping DS gluten free!
« Reply #6 on: April 21, 2009, 20:20:12 pm »
Well Alison I just went and looked at the ingredients on all commercial breads that I can find (ie/ all types of Kingsmill, Warburtons, etc etc incl white, brown and wholegrain) and they ALL contain soy flour. I would have gone right past that if you hadn't pointed it out!

DH just mentioned that we could make some our own, I have a plain white bread recipe that is basically just flour, water, yeast, and oil (tiny bit of salt and sugar).  May give it a try on the weekend, if I can decide if keeping gluten free is not worth it.

Kathryn, is it the soy in bread that means you can't eat it? I know you are dairy intolerant, but are you soy intolerant as well? I can't recall. Just being nosey, really!

fifibobandmore

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Re: Help me make a decision about keeping DS gluten free!
« Reply #7 on: April 22, 2009, 09:50:03 am »
The recipe Ihave  for gluton free bread is just gluton free flour, yeast, water, solid vegetable fat and salt which I don't add. I have a loaf in the oven now and it smells fab. So if the smell is anythign to go buy then it is going ot taste lovely. Check the ingredients on the floor package as I picked one up and it had soy in it but the other one didn't. The one have just bought was the tesco's free range flour can't remember the name of the other one which had soy in sorry about that. Will let oyuknow what it tastes like later once Ihave had a taste ooh and I have also added a banana and some dates to the loaf too just to be on the safe side of it not having a nice texture I as I can then blame to fruits.

Offline rinajack

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Re: Help me make a decision about keeping DS gluten free!
« Reply #8 on: April 22, 2009, 10:48:51 am »
If you are so concerned, there is a tissue test that can be done (I don't know if there is a  minimum age) where they can tell if a person is "at risk" of developing coeliac disease.  My DD is going to be having this test soon (they call it a tissue test but it is a blood test). My DD just had an endoscopy which showed the earliest signs of coeliac, but when coupled with her other symptoms has led the paed GI to believe it is only symptom of food allergies (already identified diary and wheat, paed GI recommends total elimination diet).  However since it can change later, if DD is shown through the blood test to be "at risk" he will do another endoscopy in about 3 years. If not at rist, no further endoscopy required.

Perhaps you can get this test done?

Something that may provide you with some comfort though, is that I asked the paed GI what the likelyhood of me having this issue in both kids is and his response was "well blood is thicker than water" the followed with "however, I don't think you should eliminate wheat from your DS until he shows symptoms of his own".

Based on that, if you don't introduce wheat/gluten, then you will never know if you were unecessarily restricting his diet.  Your DS is unlikely to ever experience the situation your mother did because he has you, a coeliac aware parent, as his mother, and you will always be on the lookout for symptoms of anything being not quite right.
Rina - Mum to Zara 29/3/06
                     Hugh 26/8/07
                     Bree 31/5/10

Offline Mashi

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Re: Help me make a decision about keeping DS gluten free!
« Reply #9 on: April 22, 2009, 19:33:04 pm »
Hi Rina
Thanks for that advice! I do know about the blood test but I can almost certainly guarantee that the NHS would *NOT* allow me to have a bloodtest just because I am a neurotic mother!  :-\  And we just can't afford to go private these days. 

But, what you said about never knowing unless I try, that is the attitude that the paed had with DS on soy formula when we found out he is milk intolerant. My first reaction was that I did NOT want him on soy because I know that many MPI babies are SPI as well, so I just wanted him straight on Nutramigen. Paed insisted that it would be a GOOD thing to know if he was soy intolerant, so give it a go.  And, in the end, he was right, because now knowing he can't have soy is a big thing. I suppose if I had given him bread and he had reacted I would have automatically assumed it was the gluten, but with soy flour being in bread, that assumption could have been way off.

And yes, you're right, much of the reason why my mom suffered was just the timing - shw as diagnosed in 1952 when no one really had a CLUE about what celiac is, and even the doctors were giving her loads of dietary advice that now we know was sooooo bad, and years of that damaged her intestine even further. 

I think we are going to try to find the time to make some homemade bread this weekend.  Will let you all know how it goes, thanks for letting me bounce it around here!

Offline Peek-a-boo

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Re: Help me make a decision about keeping DS gluten free!
« Reply #10 on: April 22, 2009, 20:03:58 pm »
JMO, but I don't think it's crazy to wait until he's one.  If you were wanting to wait until age 5, lol, that might be crazy, but one is just a few months a way. 

Offline Mashi

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Re: Help me make a decision about keeping DS gluten free!
« Reply #11 on: April 23, 2009, 07:52:52 am »
Thanks Bethany - I know you are keeping your DD gluten free as well and she is MSPI, too, right?  What do you feed her?!?!?!  We are sooo running out of things to offer.  As I said, rice and potatoes are a big problem here too, so that limits us even further!

Offline MLK

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Re: Help me make a decision about keeping DS gluten free!
« Reply #12 on: April 23, 2009, 13:17:25 pm »
I recall reading some research that basically said that it's best to introduce gluten to a baby while the mother is still breastfeeding (and eating gluten) because the breastmilk will contain antibodies to gluten. I think with your history it's understandable you'd want to wait, can't remember if you're BF or not?
When you do start you could try a sourdough bread, the souring process does breakdown the proteins a bit through fermentation. Also most sourdough breads (at least where I am in Australia) don't contain dairy or soy which makes life easier!  I've tried experimenting making my own sourdough bread but gave up after my DH and DS1 refused to eat it - too sour!

I remeber finding some gluten free sourdough rice and buckwheat bread when i was on my elimination diet - hard to find and it sold out in a day though!

Have you tried soaking brown rice for a few hours then cooking it till it is very soft? I cook it in homemade chicken stock and find that is not so constipating cooked that way.

Offline MLK

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Re: Help me make a decision about keeping DS gluten free!
« Reply #13 on: April 23, 2009, 13:43:13 pm »
Also thought I'd let you know that some babies have reacted to the preservatives in bread (calcium and sodium propionate, additives 281 and 282) so "normal" supermarket bread has even more no-nos!

Offline Peek-a-boo

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Re: Help me make a decision about keeping DS gluten free!
« Reply #14 on: April 23, 2009, 14:58:50 pm »
Mashi--there's a lot of repetition in what we offer DD to eat, but she doesn't seem to mind . . . we kind of did BLW, so everything is fingerfood . . .

Yesterday she ate:

Breakfast:  2 baby sausages (made with millet in place of the bread crumbs) and 4 silver dollar sized millet pancakes (made with egg replacer  :-\; I'm thinking of introducing eggs soon--where are you on eggs?)  smeared with coconut oil and a little apriocot all-fruit spread

Lunch:  black beans (from the beans and rice I was eating, had a sort of sweet and sour sauce on them) and a banana

Dinner:  half of a sweet potato (we dice the sweet potato, mist very lightly with oil, sprinkle with cinnamon, place in covered casserole dish and bake; sweet potatos are rather different than regular potatoes, don't know how you'd feel about trialing them . . . ) and peach slices (canned in pear juice)


The day before:
Breakfast:  8 silver dollar sized millet pancakes
Lunch:  2 baby sausages, peach slices
Dinner:  steamed match stick carrots and asparagus spears (fished out of the pasta dish we had for dinner), 1/2 banana

Some other things she eats:
--sliced olives
--pear slices
--other steamed/roasted veggies from our dinners like cauliflower, broccoli, peas, corn, etc. 
--cultured coconut milk (aka coconut yogurt)
--corn chex cereal ::)  (so not a part of my plan, lol; blaming DH for those)

Ummm . . . that's all I can think of at the moment . . .