How to try a gluten-free diet?

[ILoveAFullFridge]

I want to try ds on a gluten-free diet for a few months.

I have no problems modifying my cooking, but am not sure just how pedantic I need to be. Do I need to clear out all flours, pasta, scrub shelves, etc? Or would just not using the gluten-containing products be OK? What about potentially-contaminated products like already opened jars of peanut butter and jam? Can I use the toaster?

[looseleaf]

We haven't done anything special like separate toaster and I'm very sensitive to gluten. I just use separate pasta, bread, flour etc and you'll find you might have to cook everything from scratch a bit more that's all (or I do).

Hopefully others will advise too. I'd never share DH's plate say if he'd had toast on it but found it fine to use the toaster and same jam etc

[freefrommum]

Can I ask why you are trying a gluten free diet? If you haven't already had your child tested for coeliac disease then I would strongly recommend doing this first before cutting out gluten as the tests can't be done once they're gluten free and it can be very hard to reintroduce. If you do still want to proceed, then I'm afraid contrary to what looseleaf says, you will definitely have to avoid using the normal toaster unless you use toaster bags and you will need separate spread, jam etc. My DD is a super-sensitive coeliac but these measures are recommended for ALL coeliacs, even those who are not super-sensitive. One crumb of normal bread contains enough gluten to make the vast majority of coeliacs very ill.

[ILoveAFullFridge]

We don't think he has coeliac because he is a robust and overall pretty healthy boy. Ds is dairy intolerant, but even though his dairy intake is restricted he has started having bowel problems again. Typically explosions. His reactions to dairy include behavioural meltdown and dry skin, which we are also getting again. We've gone back to strictly df, but given that FIL has coeliac and I am mildly wheat intolerant, thought it worth trying cutting out wheat and gluten.

[freefrommum]

Given the family history (which significantly increases the likelihood) and the symptoms you describe, I would definitely push for testing first. There are NICE guidelines about this: guidance.nice.org.uk/CG86 and you may need to wave them at your GP to make sure they follow them. The initial test is a simple blood test but given your situation, even if this comes back negative I would push for a referral to gastro specialist and possibly a biopsy to be certain. If you remove gluten from the diet and see a significant improvement, you won't want to reintroduce to get tested. Diagnosis is important as coeliac disease is a life-long problem and can lead to long-term health conditions if not managed correctly. Plus diagnosis is the gateway to gf food on prescription and access to dieticians etc. Also, has your other half ever been offered testing? NICE guidelines state that coeliac blood tests should be offered when a close family member (parent, child, sibling) is diagnosed due to the increased risk.

[HadALittleFaith]

Definitely get him tested for coeliac disease before embarking on a GF diet. He needs to have been eating gluten for 6 weeks prior to being tested.

I eat GF but am not coeliac. I don't have to be really stringent but we have a 4 slice toaster - I use a separate side. I will eat things that say May contain traces of gluten whereas a coeliac shouldn't. I am careful about cross continuation e.g. Not using a knife to cut sandwiches but keep my bread in the same cupboard as DH!

[ILoveAFullFridge]

Really? Even though he is apparently healthy? Wouldn't the GP poo-poo it?

I'll have to get to a real computer and read that link, thx

[HadALittleFaith]

Yes definitely. Coeliac can start as just unusual bowel signs but left untreated can cause longer term health issues. I have two friends (diagnosed in later life) that basically had unusual bowel movements. One was also anaemic when tested. It's a simple blood test as initial assessment (not ideal I know but not majorly invasive). It's not normal to have the kind of bowel movements you're describing. I do think its worth a trip to the GP.

[freefrommum]

The GP should certainly not 'poo-poo' it (love the pun by the way!), especially given the family history but arm yourself with the NICE guidelines just in case. Most people who get diagnosed in later life have been told or assumed for years that they just had IBS or similar (some people have virtually no symptoms at all). As HadALittleFaith says, the later it's diagnosed the more chance of serious long term health problems eg calcium deficiency due to malabsorption leading to osteoporosis.

[Charmingbaker]

Just agreeing with freefrommum and hadalittlefaith. Don't go GF before testing. My DS2 has been GF for a year now and on the outside appears super healthy, yet his coeliac blood tests show a tiny bit of gluten is getting in. Some coeliacs are hyper sensitive to products that are considered GF yet have trace amounts of gluten in them. The only way you can know for sure that no gluten is creeping in is through blood tests.

[Charmingbaker]

Just to add I am very pedantic with my DCs (both coeliac). DH once made GF toast for DS2 in a normal toaster, cue 2 hours of projectile vomitting. When we stay with friends they cannot use anything from an opened jar/tub. At home we are completely GF (apart from DH sneaking in beer!). My 15yo recently got gluttened after an afternoon out with his girlfriend-.he ate GF, she had a pizza. He thinks his food must have been contaminated but I think it may have been some tonsil tennis!

[NothingsLeft]

Have you looked at soy first as a culprit. 40% of dairy allergy kids have soy issues too.

I'm a coeliac and its a big undertaking to go GF. I need to be really careful, separate everything. Needed new pots to cook in, can't kiss DH if he's had a sandwich or share drinks if he's just eaten. Contamination is a big issue and the bane of my life!

[ILoveAFullFridge]

Ds and I are both intolerant to soy. Soya ice-cream, custard and milk give us explosive stomach cramps and dramatic bloating.

So I'm already very cautious about soya!

[ILoveAFullFridge]

If the person is healthy and not having unpleasant reactions, why does it matter if a little gluten is creeping in?

[veryberrybug]

i get explosive arse if i eat wheat, though other symptoms are more grumbling & sneak up, so even just his explosions could be an indicator of something. i've not much experience in particularly GF/coeliac issues but do get him tested & push for it, i know so many parents who thought "maybe there's something" but were shooed away for being over-concerned parents... then years later diagnosis confirms what they thought & it could've been resolved years prior without causing so much damage.

[Charmingbaker]

Iloveafullfridge - it is important for coeliacs to be completely gluten free as the gluten can be causing long term damage, even if the person appears healthy. They will have difficulty absorbing nutrients - low levels of vitamin D and iron may show up quite quickly through tiredness but low low levels of calcium can lead to osteoporosis. It also increases the likelihood of coeliacs having certain types of cancer.
Therefore coeliacs have to be very vigilant when it comes to gluten and should have blood tests annually to check no gluten is creeping in.

[freefrommum]

As Charmingbaker says, coeliacs have to avoid even the slightest bit of gluten sneaking into their diet as it can cause damage to the gut without necessarily causing any symptoms. If untreated, coeliac disease can lead to infertility, osteoporosis and even bowel cancer. I guess it's different for those who aren't coeliac but are simply intolerant to gluten or wheat as I assume they don't have the same damage to the lining of the gut.

[ILoveAFullFridge]

Thanks for your advice. The GP did not poo-poo me (the pun was not deliberate!) and agrees that ds should be tested for coeliac. So I'm keeping him on gluten.

[freefrommum]

That's good news. Let's hope you get some answers one way or the other soon.

[Aupairtrouble]

Would you mind just giving me a rundown of his symptoms . I want to get ds tested. He gets a really swollen belly, cramps and explosive diarrhoea. This happens maybe ever 4 days. My mum and I have 'strange' bowels aswell but we always put it down to mild IBS or anxiety.

I Will book ds in with GP.

[freefrommum]

Hello Aupairtrouble. The symptoms you describe definitely warrant getting tested for coeliac disease. The symptoms can vary greatly from person to person with some sufferers having virtually no symptoms while others are crippled with abdominal pain, diarrohea, bloating etc. NICE guidelines state than anyone diagnosed with IBS should be offered the blood test for coeliac disease but this hardly ever happens in my experience. My DD had no symptoms at all until she was 9 when she suddenly developed terrible tummy pain that was so severe she was bent double most days. She didn't have any diarrohea before diagnosis but since going gluten free, if she does accidentally eat anything with gluten in these days she has really awful diarrohea. Many children with undiagnosed coeliac disease have bloated belly, tummy pain, diarrohea and/or constipation and 'failure to thrive' due to malabsorption of nutrients (due to damage to lining of gut). Have a look at Coeliac UK's website as well as the NICE guidelines link in my previous post.

[HerGraciousMajTheBeardedPotato]

Well, both dc have now had blood tests, both negative for coeliac, both still having bowel troubles.

Which is good news, but also frustrating because we still don't know how to help them. I do not want to put them through the biopsy unless it is really necessary.

We're going to try gluten-free to see whether it makes any difference. If it does make a difference, then I will ask for the biopsy test. I understand that that will mean reintroducing gluten.

So, back to my original question :

I have no problems modifying my cooking, but am not sure just how pedantic I need to be. Do I need to clear out all flours, pasta, scrub shelves, etc? Or would just not using the gluten-containing products be OK? What about potentially-contaminated products like already opened jars of peanut butter and jam? Can I use the toaster if I give it a good vacuuming?

[ILoveafullfridge]

Bother. Forget that I'd namechanged.

[Charmingbaker]

If you want to ensure absolutely no gluten is creeping in you have to be very pedantic. My coeliac DS has reacted to GF bread toasted in a normal toaster that hadn't had normal bread in it for months. At home we bought a new toaster and it is

[drivenfromdistraction]

Just to say - did they test for IGA and IGG antibodies? (about 10% of coeliacs don't produce the IGA ones so that test produces a false negative in those cases).

[Charmingbaker]

Sorry - posted too soon.
We only use GF products in our toaster. Away from home I use toaster bags.
I won't ever use opened butter / jars at anyone's house even if they assure me it's fine,.
Only buy GF cakes in a cafe if they are wrapped up ( I relaxed this rule a few weeks ago, DS had the GF cake after waitress assured me it would be fine, 2 hours later the projectile vomiting started).
When DS was first diagnosed his dietician told me to put everything in the dishwasher.
I chose to have a GF home because I thought it would be easier, a few months after DS2 was diagnosed DS1 was also diagnosed. It also means none of us have to think at home 'can they have this?'
I threw out every opened jar and packet, gave away bags of pasta and flour, even got rid of my bread maker. I scrubbed every cupboard and utensil. However, I knew my DCs were coeliac and that they could never have gluten.
I would also add that it would be worth avoiding all oats as well initially. The protein in oats is very similar to gluten and some people who have issues with gluten also have issues with oats.