coeliacs-sensitivity

[mummykk87]

Right ladies I'll try to make this short but there's alot of info :)
My eldest son (nearly 4) has been on a gluten free diet since he was 18 months old , despite an inconclusive coeliac blood test, he was going through a pack of 24 nappies in 2 days, couldn't eat, could see all ribs front and back, stomach was so distended it was like holding a rock, serious anemia, lethargy, dermatitis, weight loss, no growth in 9 months and generally disappearing into nothing. He started to thrive after he was 2.
But now at nearly 4 I still struggle with the difference of opinions and every1's reactions are so unique to the individual.
They are saying that maltodextrin is fine for coeliacs as are gluten free oats, my son cant even use a toaster that has had gluten bread in it or butter that's had a gluten covered knife in it, and yet I see negative effects, toilet troubles, cramps, the eczma like patches that appear, the swelling of the abdomen, lethargy, etc etc when my child has these so called 'safe' ingredients.... So to my knowledge of watching my son they are not 'safe' foods or is it that his coeliacs is so sensitive that even this trace amount can effect him..... Has anyone else experienced these symptoms with these ingredients adult or child.... I would like too hear of any other symptoms or experiences also :)

[Superworm]

In the early days, I shared a bowl of chips with a friend that was eating a sandwich and was ill. I've been ill through kissing DH or sharing his drink after he's eaten gluten. Even trace amounts will sometimes do it. That's why it's really important Coeliacs have separate butter, jams - anything that may be cross contaminated with gluten. You can buy toaster bags for sharing a toaster.

I can eats oats occasionally, same with maltodetexrin, malt vinegar and other things that are deemed 'safe'. There are lots of Coeliacs that can't eat these at all.

I find gluten traces kind of build up, so if I've cooked everything from home for a week, I could have malt vinegar on my chips or have gravy. If I do these things regularly, I'm ill. It's no fun really being a coeliac. It's the cross contamination side of things that's me it really difficult.

[Bingbongbinglybunglyboo]

Hi, I was adivised by dietitian to buy a toaster that stayed gluten free, ( I got a cheap one) and I keep uncontaminated butter in a sealed Tupperware. Jams and spreads are now spooned out the jar, so that no cutlery that had gluten on it touches it.

I use seperate chopping boards and cutlery when preparing gluten free food when gluten containing food is also being made.

I don't use wheat flour / gluten ingredients on my kenwood mixer. All gluten foods are kept on a bottom shelf, so crumbs etc don't end up on gluten free ingredients.
Some coeliacs (10% I think) also have a response to a protisn found in oats, so even un contaminated gluten free oats are nono.

Coeliac uk might be able to help you, as would aDietitian if you could get a referral?

[mummykk87]

Hi yeah I know all about cross contamination lol and my whole house is gluten free but my sensitivity is nowhere near as severe as my sons.... My question was more about the 'safe' ingredients which the first person answered wonderfully thankyou very much.... I also have found I cant eat more than 2 items of gluten a week and oats and me are a disaster everytime haha

[mummykk87]

And he was referred when he was a baby :) they told me to try to reintroduce in 3 years haha I tried a 1/4 teaspoon of rice crispies ..... Which only have malt flavouring and he was ill for the next 2 weeks haha he can do the reintroduction if he likes when hes older but I'm not putting him through it again!!!!! Id rather pay for everything than put him through 5 weeks of eating the stuff :(

[Superworm]

Are you a coeliac too op?

The theory is that even trace amounts of gluten cause an immune response. Some people will have no symptoms at all but the damage is still being done, hence the total strictness. So even though I consider it ok symptom wise, it may not be IYSWIM. It's hard enough as an adult living the coeliac lifestyle but I think it's much more difficult with children.

[mummykk87]

I have not been diagnosed :) always had mild symptoms, or so I thought until I tried a gluten free diet and could hold a weight, not feel sick, tired and ratty along with skin improvements and I had never had (excuse my openness) a solid bowel movement my whole life :( both of my children are very sensitive to alot of things with my youngest having severe allergies but I have mostly used my mothers intuition and then have later been praised by professionals for the progress my children have made since I made the conscious decision to take out all allergens and re introduce 1 by 1 until I found the culprits.... But I have recently thought to myself if I can do the 5 weeks pre testing, although it wud make me severely ill, then I would know for myself where it came from :)
I have pretty much decided we cant use these 'safe' ingredients but its funny how conflicting peoples advice, symptoms and knowledge varies......

[MsRainbow]

I have 2 coeliac DCs, DS2 is far more sensitive than DS1. I have to avoid all products with codex wheat (which is labelled GF, which in the UK means less than 20ppm of gluten) as they give DS2 loose bowels. If they did ever eat a crumb of toast (from a toaster or butter) DS1 would have a bit of a sore tummy for a few hours, whereas DS2 would projectile vomit for 2 hours. I think part of the reason may be that DS2 got very ill before diagnosis, DS1 was only tested because DS2 had just been diagnosed and we were a bit surprised when he tested positive. Also DS1 is a teenager, DS2 is only 3, I hope DS2s reaction to gluten becomes slightly less severe as he gets older.
We avoid all things with any trace of gluten now (even those deemed safe). It's a pain that some things labelled GF have traces, I recently bought knorr's stock pots as they were labelled GF only to find they have barley malt in their list of ingredients.
I know in other countries the labelling of GF foods is much stricter than here. I think in Australia it has to be below 5ppm to be labelled GF and in Canada they don't even allow any trace of gluten at all.

[nomdemere]

I have two sons age 6 and 5. DS1 is coeliac, and was severely ill before diagnosis with near-total villous atrophy. DS2's test results were inconclusive, but his symptoms (which were developing in the same way that DS1's had done) went away completely with the gf diet.

Like a previous poster - DS1 will projectile vomit for hours after a tiny amount of gluten, whereas DS2 shows little or no symptoms. I too think that may have something to do with the fact that DS2 was only just beginning to be ill at the time of diagnosis, whereas DS1's immune system must have been in total overdrive.

I too find the advice on gf oats and codex wheat starch annoying. We don't eat either (I used to give the DC bread with Codex starch, but stopped 9 months ago after DS1's blood test showed a low level of antibodies persisting.) He's just had another blood test and I'm hoping it's clear, waiting for results (will update when get them at the end of the week!)

DS1 has occasional tummy aches. I suspect that these might be from incredibly low levels of cross-contamination (not from home, where we are totally gf, but from outside the home). It is difficult, I agree, but we have to be very careful. I would never allow him to have toast that had been made in a toaster that wasn't solely for gf bread (which means he only ever has toast at home ...) Outside home he also only ever has butter that is from a new packet, which I realise some people raise their eyebrows at, but I think is necessary. A few crumbs are all it takes for his immune system to be triggered.

[freefrommum]

My DD is classed as a 'super-sensitive' coeliac as she reacts to the supposedly 'safe' levels in Codex wheat starch and barley malt extract so we avoid those plus gluten-free oats but she does have malt vinegar and maltodextrin without any problems so I think it really does depend on the individual. However, ALL coeliacs should use separate toaster, butter, jam etc as one crumb is normally enough to cause a reaction in the vast majority of coeliacs, even those not classed as sensitive.

[Tanaqui]

I didn't even test positive on the blood test for coeliac a and I can't tolerate barley malt at all, or malt vinegar, but am fine with gluten free oats- I wonder if there are other things causing the reaction sometimes, it's so bizarre! How is codex wheat referred to in ingredients- as codex wheat or something else?

[phantomnamechanger]

DD is 14 and was diagnosed coeliac at 5
she has separate marge tub to the rest of us and we use spoons for jams etc so no crumbs

we did use toaster bags for a time and they were very handy when going to B&Bs etc, but we decided even they were risky as there may be tiny crumbs on the outside when they are handled/put on the plate, so now we keep the grill for GF and the toaster for nonGF

we avoid ALL barley malt extract in cereals etc, and also ALL oats, even those certified GF, as the protein in them is similar to gluten and DD is supersensitive - she had a relapse aged about 8-9 after becoming heavily dependant on codex based products. we now have none of those either.

[phantomnamechanger]

tanaqui

it can be called codex wheat starch, gf wheat starch, codex A, codex alimentarius wheat starch

I think in UK labelling laws the specific grain has to be mentioned

if it just says 'modified starch' in ingredients, then it is NOT wheat based, very likely maize

[Tanaqui]

Oh thank you phantom, don't think I've had that then. Barley malt is evil!

[nomdemere]

Codex is in a lot of gf bread products.

Since we cut it out, 9 months ago, DS's blood test result has finally fallen from low amount of antibodies to NO antibodies. Hurrah! Don't know if it was cutting out the Codex that did it, but we won't be introducing it back in.