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?

[drivenfromdistraction]

If you join Coeliac UK (first 6 months are free I think) then you can use their electronic food directory where you can enter in foodstuffs and find brands that are okay - they also have a printed directory listing thousands of items, and email you monthly updates to it.

[drivenfromdistraction]

Like charmingbaker, we went completely gf at home (two coeliac DC). For a while, I tried it the other way and it was an absolute nightmare. I had to do that because one DC was still waiting for testing so had to keep eating gluten. But I was constantly on edge, having to think about what touched what, and also watching everyone else to see they didn't make a mistake.

Now it's much better. Nothing that contains gluten (or oats, even gf ones) comes into the house. Blanket rule, don't even let visitors bring anything - if they don't like our food, they don't have to stay!

I replaced a LOT of kitchen equipment - toaster, grillpans/baking trays, casserole dishes, wooden utensils, sieves, colanders, graters. Expensive, but worth it IMO.

I chucked out / gave away flour, pasta, biscuits, preserves, stock cubes, gravy powders etc etc. Completely washed out all kitchen cupboards and scrubbed down kitchen.

This way we can all share meals, all eat things without fear, and there is a 'safe space' for the DC - the only one that exists for them, and to me that feels important. Everywhere else they have to be super-careful about cross-contamination, but I don't want home to be like that.

As a bye-the-bye, DH and I (neither of us coeliac) both felt a lot better digestive-wise after going almost-gluten-free (we eat gluten outside the home, just for convenience). For about 6 months we both had massive bread-cravings and would order the bread-bowl on our (infrequent) meals out. But that just disappeared, and now neither of us are in the least bothered - if we eat out without the DC, then I'll often choose a gf option if it's there. If we eat out with the DC, we always all eat gf - easier because DC still young, so we still have to cut up food etc. and don't want to have to keep thinking about what utensil has touched what. Also nice to be able to let them try something from your plate.

But your DC aren't coeliac (although they will have a higher chance than average of developing it at some point in their lifetime since they have coeliac relatives) so it's possible you don't need to be this careful.

[Iloveafullfridge]

Are there any websites where I can enter details of a ready-made food item and get suitable/unsuitable result, or do I have to research each item/manufacturer separately?

[Iloveafullfridge]

I don't know which tests were done.

Dh has agreed that it's simpler if the whole household goes GF for the duration. We've decide to start after Easter, which gives me time to run down supplies, research alternatives, and get scrubbing.

Ugh. Going DF was much easier!

[orangestripe]

The easiest thing of course is for you all to go gluten free in your home, which is how I lived with my DH until we had children. This is the least stressful way of living since you know that everything in the house is free from contamination.

The reason I have all these separate areas and cupboards is that in my house it's only me that has CD and after having children I wanted the rest of my family to have as normal a life as possible.

As *Charmingbaker says, beware of "gluten free oats/oatflour" too. I am one of those coeliacs who unfortunately can't have those. DH just bought some Morrisons GF Cookies at the weekend and after scoffing half the pack, I noticed they were made with GF oat flour. I am now ill. Bleurgh.

[orangestripe]

I'm a coeliac and to answer your questions:

Do I need to clear out all flours, pasta, scrub shelves, etc?

Yes. Or have a separate space for gluten and gluten free which has been thoroughly scrubbed. I wouldn't risk having glutenous flour in my house since it gets bloody everywhere but I do sometimes buy glutenous pasta/spaghetti if I'm feeling sorry for the rest of my (non-coeliac) family (it's just me with CD so far). But if I ever cook the glutenous pasta at the same time as my own GF pasta, I have to be ultra careful with stirring one pan with one spoon and putting it on its own spoon rest and always stirring the other pan with another spoon and putting that one on its own spoon rest (by spoon rest, I obvs mean plate or piece of kitchen towel - I'm not that posh. But I do put it on something in case the worktop has crumbs of bread on it or something).

Or would just not using the gluten-containing products be OK?

No this is not OK unfortunately (I say unfortunately coz I realise all of this extra caution it's a right bloomin pain, but it's necessary).

What about potentially-contaminated products like already opened jars of peanut butter and jam?

Not suitable. We have separate jars (clearly labelled, or kept in a different place).

Can I use the toaster if I give it a good vacuuming?

I wouldn't take that risk. We have always had 2 toasters. If using the grill for something like cheese on toast, either use a clean oven tray or cover the grill pan with kitchen foil.

[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.

[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]

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

[ILoveafullfridge]

Bother. Forget that I'd namechanged.

[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?

[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.

[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]

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

[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]

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.

[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.

[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.

[ILoveAFullFridge]

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

[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!

[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!

[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!

[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.

[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.

[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.