Help needed, DP just diagnosed with Celiac Disease

[Gloria42]

DP's consultant just called to confirm diagnosis of celiac disease. He recommends an immediate change of diet, but I have no idea where to start. Can anyone help?

We have DS (17months), do we all switch to gluten-free or is it possible to have both in the house?

Any help appreciated

If DS is exhibiting any symptoms, then I would get his blood tests done, but they aren't always conclusive in children unfortunately. flamingtoaster is more clued up about it than me

Just tried to find my book to check tesco crisps, but it's lost under a pile of detritus in our study, sorry

When you join the CUK you will get a printed copy of the glutenfree "bible" - and the password to allow you to access it online as well.

Tesco 30 Pack Assorted Crisps 30 x 25g is listed as gf but barley malt status is not known (probably won't be a problem with your DP). (Individual flavours are not listed).

Other suitable Tesco crisps are:

12 Pack Meaty Crisps 12 x 25 g
6 Pack Ready to Salt Crisps 6 x 24 g
6 Pack Variety Crisps 6 x 25g
Value Cheese and Onion Crisps 6 x 18g
Finest Cream Cheese and Cracked Pink Peppercorn Crisps 150g
Finest Lightly Salted Handcooked Crisps (150g, 300g, 40g)
Finest Mature Cheddar and Caramelised Onion Flavour Crisps 150g
Value Ready Salted Crisps 12 x 18 g
Ready Salted Crisps 12 x 25 g
Ready Salted Crisps 6 x 25 g
Reduced Fat Crisps Variety 6 x 25g
Finest Sea Salt and West Country Cider Vnegar Flavour Crisps 150 g
Finest Sundried Tomato, Garlic and Basil Flavour Crisps 150g
Thick and Chunky Ridge Crisps Assorted 8 pack 8 x 25g

Always check the labels/wrapper each time you buy - recipes change without warning sometimes!

If your DS shows any symptoms then he should have the blood test immediately but as lackaDAISYcal says it can be unreliable in small children, but if he shows symptoms your doctor should know straightaway. He should certainly be tested when older. When DS was diagnosed DD was tested - and it is considered good practice to test other family members if one is diagnosed.

I'm feeling a bit better this morning. I've looked at a lot of the recipes we like to eat and most of them can be adapted (if i make my own stock for example) but lunches are stumping me. When you've eaten sandwiches for 40 years, where do you go on a gf diet?

Flamingtoaster, thanks so much for this. Have joined coeliac online so will take closer look at the list online.

What would the symptoms be on a toddler? He doesn't seem ill to me but I have concerns. Might make an appt with his doc just to be sure

Also, and apologies for the deluge, but what kind of word should i be looking out for on labels? I get the main ones, but on mustard? soy sauce? what's to look out for?

It would be a good idea to speak to your doctor if you have concerns about DS.

Labelling is now much better than it was - anything manufactured in the EU should indicate clearly if gluten is present.

Explanation here: coeliac.info/suppboard/viewtopic.php?t=2598&highlight=labelling

I don't want to confuse you at this stage but on that list maltodextrin is listed as being glutenfree - it is considered glutenfree even if manufactured from wheat because such a tiny amount of gluten is left after processing. However, some coeliacs react to it either because they are super-sensitive to minute amounts of gluten, or because they are sensitive to the wheat itself. It's just something you should be aware of if DP reacts to something you wouldn't expect him to react to. Personally we avoid maltodextrin unless derived from corn (manufacturers will tell you if you contact them what it is drived from) - but then my DS is allergic to gluten as well as coeliac so I tend to avoid any possible source of even small amounts of gluten.

I always read the labels even of our "safe" brands because recipes do change. You would be looking for any mention of any of the words listed on that list - or even anything which just makes you wonder - it's always worth checking with the manufacturer if something makes you go hmmmmm. I check the allergen box - then check the ingredients (because we avoid maltodextrin, and wheat derived additives of any kind, glucose-fructose syrup, and malt barley).

Soy sauce - Tamari is the only safe one I think.

It will all seem much easier now you have access to the CUK list online.

"Meridian Tamari Soya Sauce" 150ml and 500 ml are gf - the Clearspring Double Strength Organic ones listed in the "bible" are all multiple packs of 6 x 150 ml or 6 x 500 ml so unless you are into catering that would be a lot! Tesco used to do the Meridian one - I haven't looked for it recently.

Glad to hear you're feeling more positive today. You don't need to make your own stock - Just Bouillon and Kallo are both gf, as is Marigold.

Does your DH have access to a microwave at work ? I take leftovers from the night before, or turn the pasta/rice into salad, or take something from the freezer. If you nuke a potato for 10 mins in the morning you can reheat it for lunch quickly to have with beans or whatever. Soup is always good, and you can make little quiches and sausage rolls for lunch boxes. He might like rice cakes with tuna mayo/chicken and bacon mayo or peanut butter, or hummus.

For a lot of things, if you look you can see the wheat/barley. Wheat is the first thing on the label for soy sauce.

If you post a weeks evening meals that you would normally have, we can make the suggestions for subsituting things that would be unsuitable in them

Sorry, forgot to put this link on my last post. Four links are listed here:

coeliac.info/suppboard/viewtopic.php?t=1445&highlight=lunches

which summarizes discussion of glutenfree lunch ideas from the coeliac board.

I have two DSs with Coeliac Disease. The bread you get on prescription is much better than the stuff you buy in the shops. Juvela Gluten free Freah Bread is baked to order and delivered to your pharmacy. it is much lighter in texture than the other breads we have tried-similar to ordinary sliced bread.

Stupid question alert! Am I right that if a product IS on the CUK list, that means it's gf? e.g. hellmann's mayonnaise?

The panasonic bread maker is excellent (if you are thinking of buying one). Consistent results each time.

Thats right - Hellmanns is fine. Heinz ketchup and beans also

Phew!

DP went to own GP yesterday but he was little help. Said he couldn't give any prescriptions etc until DP saw nutritionist/dietician. Luckily he has BUPA so this should be next week at the latest.

In the meantime, I have been emptying the shelves of gf products in Asda and Tesco to see if there are things he likes! Also, i've been thinking about recipes I make to see which can be adapted.

cmotdibbler, thanks for your help. There's a fresh fish van who delivers to our street and we regularly have breaded haddock - any suggestions for alternatives to the orange breadcrumbs you get from fishmongers? I guess could make crumbs from som gf bread? Also, can i use balsamic vinegar? I seem to remember malt vinegar is off limits, can you buy a gf version? We eat pasties and pies occasionally, normally homemade with puff pastry - I guess this is out of question?

Today it seems that he's coming round to the idea that this isn't the end of the world with regard to what we eat at home, but how easy is out outside? At weddings, other people's homes etc? Also, can he still have the occasional takeaway?

So many questions, but I can't wait until dietician appt! DP keeps asking me to "calm down to a frenzy" with my need for information, but this is how I cope!

You can get gf breasdcrumbs in Sainsburys, or just save gf bread that he doesn't like and whiz it up and freeze.

Balsamic and malt vinegar are fine - the distillation process removes all gluten.

You can buy pasties from Lifestyle www.gfdiet.com that are nice - don't think that you can make your own puff pastry.

Takeaways - difficult. I eat Indian (just about everything except Naan, chapatti and pakoras), about 2 chinese dishes from places I know, and some Thai. Sometimes chips if I know they aren't fried in the same oil

Weddings - some people/their caterers are fine. Some are a right pain. You do have to be a bit bolshy and ring them. Take a cool bag and leave in the car/your room to top up with though - it can be melon, veggies, melon and then nothing at the buffet.

Other peoples homes - again, variable. Good friends have no probs at all. Other people (like my sil) make it a huge issue. I usually offer to bring a pudding as thats what people have most problems with.

Eating out generally - can be a pain. Start with places like Beefeater who have an allergy menu that he can select from.
Don't know where you are, but there are quite a lot of places with gf menus if you seek them out.

I really hope the dietician is of use - most people say that by the time they see them they know all that they are told. They aren't any good at telling you the tricky things - turning down food at parties, how to persuade people to choose a restaurant that you can eat at, and how to save face and not poison yourself when given unsafe food at a big gathering.

Thanks again, hadn't yet considered some of these issues!

Eating out anywhere is the biggest problem for us to be honest. We usually end up taking a picnic on days out because takeaways are impossible. (Other than McDonalds without the bun of course!)
Holidays are self-catering. My DS1 went to Belgium once and ended up living on liquid meal replacements he had taken with him because he just could not figure out what was safe to eat!(Luckily it was only for a weekend!)
Oh, Nandos meals are mostly gluten-free if you have one of those nearby.

If your DH turns out to be OK with malt then malt vingear will be OK but some coeliacs on the coeliac board have reported reacting to it. We use Tesco Red Wine Vinegar which is really nice.

Hi, if anyone's about, what is the situation with herbs & spices? My curry paste says gluten free, but what about the curry powder that doesn't mention it? Thanks

What does the curry powder say it has in it ?

I don't think I have ever seen a curry powder that wasn't gf tbh

Just a lot of spices tbh, Just being paranoid i guess!

It is a nightmare to begin with, and its easy to be caught out by things like boiled sweets, chewing gum, or pregrated cheese.

Some people do have a very strict 'zero gluten, zero chance' kind of attitude to things. Personally, as its my health (would be different with a child), I take all possible precautions, choose in restaurants with care and would never do anything like eating the topping off a cracker/middle of a cheesecake etc, I do eat out, and I choose not to ask them to grill meat on foil and that kind of thing. But I have to travel a lot for work, so it would be very hard to take a hardline attitude to things. And my health is OK. But its something that your DH has to decide on, as to where he will fit in the spectrum of attitudes.

At the moment he's doing cold-turkey with the help of CUK list (which has Wrigleys Extra chewing gum on it so we're ok on that score!) but I foresee a time where he will have the occasional lapse, it's in his personality. That's assuming he's like yourself with no major health issues caused by a slip

DS isn't showing any symptoms that we can see but we'll ask the consultant next week what he suggests.

What's the issue with pregrated cheese? isn't it just the same as a big lump?

I do have symptoms if I get glutened, make no mistake about that, but for me, its a risk I have to take in order to do the job I do iyswim. I have never knowingly eaten something I shouldn't, and you have to keep to that.

Pregrated cheese usually has some sort of starch added to make it freeflow and not stick together. Often its potato flour, but sometimes (I think at one point Asda cheese was like this) its wheat.

Eating at home will be no problem at all for you or him in a very few weeks - its all the casual food of life thats tricky.