Coeliac newbie questions

[afternoonbiscuit]

New coeliac here! I was diagnosed a few days ago and am feeling pretty glum and confused. I’m trying to read up on it, but chasing a toddler around all day means I haven’t gotten far yet. I have lots of questions and wonder whether there are any MN coeliacs who could help me with them?

1. When ordering food in a restaurant, do I always have to check that the dish is definitely GF? So not just assume that, say, a green salad doesn’t have any gluten-containing ingredients.
2. If a food label doesn’t list any gluten ingredients and doesn’t say “may contain gluten”, yet still isn’t specifically stating that the product is GF, can I buy it? Ben & Jerry’s phish food comes to mind, and a pack of pre-cooked quinoa I bought.
3. What’s the deal with oats? Can I eat them?
4. How strict should I be with cross-contamination? I’ve seen advice to have my own bread cutting board, toaster/toaster bags, to not kiss my husband if he’s had gluten… is it so severe? And what about when you eat at someone’s house? You can’t prevent contamination there.
5. Can I still cook with gluten-containing products for my son and husband?
6. I do most of the cooking in my home. How do you manage this shift when you’re the only coeliac in the family? Do you tend to mainly cook GF for everyone?
7. Should I have any more tests down the line? My GP just informed me of the diagnosis and sent me on my merry way. Is it worth checking my transglutaminase iga ab and iron levels again in 6-12 months to see if all is back to normal after cutting out gluten?
8. Are there any good online shops for GF in the UK that you can recommend?
9. Do you have any sense of how long you had CD before you were diagnosed? My only symptoms are low iron and rapid weight loss (potentially also tiredness, weakness and brain fog, but that’s also motherhood!). The weight loss happened as soon as I’d lost my baby weight - I just kept going down and down on the scales. I wonder whether pregnancy could have set it off, but then I wonder whether I could have had it longer as I have had issues with iron for at least ten years, as well as reoccurring problems with depression, anxiety, restless leg syndrome, headaches, poor sleep. These may not be related, but this diagnosis is making me wonder.

That’s it for now! I would love any advice you have🙏🏻

Sorry, posted on the other thread so will copy it here

1. Yes. Always check, you need to make sure they prep on clean surfaces, use fresh butter, etc.
2. will be safe. By law it must be in the ingredients or listed as a “may contain”.
3. Not unless gluten free oats
4. Very. You need to use a plastic, washed chopping board, own toaster or toaster bags, own butter, own jam. A crumb can make you very sick. I think kissing ok as long as not immediately after a slice of toast. Same if you go to someone’s house, there is only one person I trust and that’s my SIL as she also has coeliac disease. We take our own food to my mother in laws as it’s a contamination nightmare and me and dh will cook it ourselves.
5. Yes
6. Whatever works for you I guess. I cook a lot of naturally gf meals, so rice instead of pasta. If doing pasta will do normal and gf versions. My SIL makes the whole house eat gf pasta.
7. It’s worth asking. Some people also get dexa bone scans yearly but seems a postcode lottery.
8. Caputo gf pizza flour from Amazon and learn to make your own pizza base.
9. It’s Dd not me with coeliac and I would say ten years. Since mid primary age and was diagnosed at 16. Was always little and pale and sick 2 or 3 x a week.

Honestly?

You need to be suspicious of everything you haven't made yourself. Salads have croutons, dressings get wheat and barley chucked in (especially soy sauce - you need gluten free tamari instead), manufacturers forget to mention the wheat flour and only recall after multiple reports of illness, spouses forget that you can't have the packet of stuff they can or stick their knife back into the peanut butter with breadcrumbs...

Some people can do GF oats (standard ones are usually cross contaminated in harvest, storage or manufacture), some can't tolerate the evening protein either. You might also have lactose intolerance from gut damage.

After a while, it gets easier because you're more used to it, but the initial stage can be tough.

DP is largely GF at home, but I still get caught occasionally, which means he's slipped up somewhere when cooking or there's undeclared gluten lurking in a previously safe food.

I’d also say look for uk based fb groups and join them because they’re useful for getting heads up of new food or nice food. BTW, a lot of bread is awful. The Promise loaf is quite nice also Warburton tiger loaf. Stuff is so expensive though.

DD’s jam, butter, etc always has a little gluten free sticker on, I bought a pack from Amazon. So we never use her stuff by accident.

My little girl got diagnosed last summer at 18months old and as a household we have gone gluten free.

Always always either google restaurant or ask for a menu. Some will make it clear they can be certain there will be no cross contamination. Others can we very accommodating

You can download an app what scans products and tells you if it is okay or not

No oats. Only gluten free ones

Get to know what ingredients you can have so when looking at products you know what is safe and what isnt.

Probably safest thing is to just make sure where ever your cooking is cleaned down after any gluten has been cooked. Having a separate chopping board etc may be a good idea. When my little girl goes to grandmas she has her own side of the toaster that no gluten goes in.
My little girl has if pretty severe and did get glutened at a cafe through cross contamination.

You deffo can still cook for others.

We are mainly a gf house hold. When little one stays out we will have something with gluten.

Blood tests every 12 month just to check levels. Iron and calcium levels can get affected.

We tend to now do a lot of our food shop online if you search on asda morrisons etc gluten free allsorts comes up a lot more then what is on the shelves in the shops

Feel free to ask anything else xx
Not sure how long my little one had it for, one day she started projectile vomitting and looked very ill & lost a lot of weight!

@afternoonbiscuit

You might be able to get a sample pack from Juvela and Glutafin.

https://www.juvela.co.uk/sign-up/

https://www.glutafin.co.uk/register/

There are some nice recipes on the Coeliac UK website. It's worth joining Coeliac UK, one of the benefits of joining is the Food Guide they send you.

https://www.coeliac.org.uk/information-and-support/your-gluten-free-hub/home-of-gluten-free-recipes/

Don’t use a plastic chopping board. Coeliac or not, plastic is the devil. Glass or wood.

I actually do share chopping boards and have got lax these days with butter (but wouldn’t actually eat a visible crumb). I do have my own toaster though. I wouldn’t with one of my children though, thankfully they’re not coeliac.

whole family eats gf except for bread and cereal (I wouldn’t put them through the bread) and I don’t like cereal anyway (plus it’s 3x the price). It’s just easier and they can’t tell the difference so it’s fine.

absolutely don’t trust a soul when eating out. Check, check, and check again.

Hi, it's a real learning curve and you will slip up here and there in the beginning, we all do. It seems quite overwhelming to begin but you will get the hang of it.

• When ordering food in a restaurant, do I always have to check that the dish is definitely GF? So not just assume that, say, a green salad doesn’t have any gluten-containing ingredients.

Yes, never assume anything is okay.

• If a food label doesn’t list any gluten ingredients and doesn’t say “may contain gluten”, yet still isn’t specifically stating that the product is GF, can I buy it? Ben & Jerry’s phish food comes to mind, and a pack of pre-cooked quinoa I bought.

Yes, so long as no allergens highlighted or may contains then it's okay

• What’s the deal with oats? Can I eat them?

Gluten free oats only but a lot of people can't tolerate them and it might be an idea not to have them and introduce them later to see if you react.

• How strict should I be with cross-contamination? I’ve seen advice to have my own bread cutting board, toaster/toaster bags, to not kiss my husband if he’s had gluten… is it so severe? And what about when you eat at someone’s house? You can’t prevent contamination there.

I find this the hardest bit personally. Definitely own toaster, butter etc. We use plastic boards so stick them in the dishwasher. Kissing - some people say having a drink of water is enough, others brush teeth and leave it an hour or so. Bit of a personal choice one. I don't tend to eat at peoples houses unless they are totally clued up on it, being my own food otherwise.

• Can I still cook with gluten-containing products for my son and husband?

Yes, so long as it's completely separate from your food. Separate baking trays, pans etc. Don't use anything that has crumbs etc

• I do most of the cooking in my home. How do you manage this shift when you’re the only coeliac in the family? Do you tend to mainly cook GF for everyone?

I predominantly do GF eg pasta, rice and potato, meat and fish dishes and I only have GF flour in the house so all baking and cooking is GF. It's normally things like pizza, sausage rolls, nuggets, pies etc that are not but I still cook them for everyone as and when.

• Should I have any more tests down the line? My GP just informed me of the diagnosis and sent me on my merry way. Is it worth checking my transglutaminase iga ab and iron levels again in 6-12 months to see if all is back to normal after cutting out gluten?

Total postcode lottery, unfortunately.

• Are there any good online shops for GF in the UK that you can recommend?

I just get supermarket stuff so can't help here, sorry. Though there are bakeries that are meant to be good. Manna dew, wildcraft (I think), Roy's bakery.

• Do you have any sense of how long you had CD before you were diagnosed? My only symptoms are low iron and rapid weight loss (potentially also tiredness, weakness and brain fog, but that’s also motherhood!). The weight loss happened as soon as I’d lost my baby weight - I just kept going down and down on the scales. I wonder whether pregnancy could have set it off, but then I wonder whether I could have had it longer as I have had issues with iron for at least ten years, as well as reoccurring problems with depression, anxiety, restless leg syndrome, headaches, poor sleep. These may not be related, but this diagnosis is making me wonder.

My mum nagged me for years and years but I was in denial until I finally relented (strong family history of coeliac).

Keep BROWS in mind. Barley, Rye, Oats, Wheat and Spelt. So much turns up in unexpected places - salad dressing, drinks, cereals, soy sauce, stock cubes, chips, gravy. Even if something is safe one week, the next they could have changed the ingredients. It's easy to get caught out.

Hope you feel better soon, it becomes much easier over time but I still miss bread and a jam doughnut!

tesco and Asda do the best gf treats by the way - biscuits mostly. Tesco bourbons and custard creams are the absolute best. Asda does some special cookies like raspberry and white chocolate which are yum.

sainsburys is ok, M&S do the best chocolate fudge cake. Waitrose is diabolical, don’t waste your time.

I like brown rice pasta rather than the gf mush. Oh and M&S brown bloomer is my favourite bread, although I do like the tiger loaf by warburtons on occasion.

Dont even attempt pastry like sausage rolls. Absolutely gross. Sainsbury’s frozen steak pie is pretty good though. Oh and Asda do really good gf frozen pizzas, onion rings and curly fries which is pretty exciting if you want a beige dinner on occasion.

Join Becky Excell on Facebook, huge group of coeliacs and she's very supportive with lots of recipes. Also has loads of recipes here glutenfreecuppatea.co.uk/

Deep breath. I remember the mental overload at the start.

I keep separate spread, and make my toast using foil on the grill as I don't have it very often as GF bread isn't the greatest.

We both eat GF pasta etc. if I make dinner, but at other times I will cook separately. Online shopping is your friend, not necessarily for delivery, but to find GF items from the main aisles. Once you have your list, you can shop at will. Beware of and check anything that says new recipe.

We don't kiss immediately after toast or obvious gluten, but otherwise it's fine.

If you don't start feeling better after a while GF, it might be worth checking if you are also lactose intolerant. A certain percentage of coeliacs are while the villi in the gut heal. I'm still very lactose intolerant 10 years after diagnosis. There isn't really testing for this, although I recall reading something about a hydrogen breath test. If you are still not well in a few months, try replacing milk and cheese etc with lactose free alternatives. That's worked for me.

Good luck, and happy to answer any more specifics as you think of them.

The Schar frozen rolls are the closest to normal bread I have had-you wouldn't know the difference. Unfortunately you can only get them in Asda and Sainsbury's (freezer section).

I have annual blood tests to check my levels-now back to normal since going GF. Ask your GP.

I won't lie, it's a major pain when you are first diagnosed. But you do get used to it. I always carry little GF snacks with me when I'm out and about but it's definitely getting better. M and S cafe is fab for GF stuff now whereas Costa/Starbucks are crap!

Good luck!

I was diagnosed after having a low ferritin for many years and much later on becoming anaemic. My sister is Coeliac too, so l knew it was in the family but l didn't have classic symptoms and had not thought about it.
My son and daughter were then tested, although the GP was reluctant to get them tested. My daughter is not Coeliac but my son is. He had not appeared to have symptoms but after going gluten free he said how much better he felt, he hadn't realised.
Maybe your son should be tested?

I will reply tomorrow during DS’s nap (more questions have sprung to mind already) but just wanted to say thank you so much, everyone! Less than an hour and I already know so much more and feel a bit less overwhelmed. Thank you!

And fried things in restaurants - you'd be amazed how many places happily tell you their chips etc are gluten free but then bung them in a fryer with a multitude of things covered in bread crumbs. You always have to ask if it's a dedicated GF fryer!

Forgot to add about restaurants, to say that most chains have allergen menus and strict staff training policies. I have been fine at Ask, Cote, Nandos, Beefeater, Bella Pasta, etc... Also tiny places where they cook everything themselves and know exactly what went in it.

1 Yes. I try to order first and tell the server that I have coeliac disease and that I can’t have wheat or gluten - belt and braces! By law, restaurants must be able to tell you if any of the seven major allergens are present.

2 I eat almost anything that does not contain wheat, barley, rye or standard oats in the ingredients. Also eat ‘May contains’. The exception to this is cereals due to the manufacturing process

3 You may be able to eat GF-certified ones. I do everyday

4 My home is GF and the other two houses I visit often keep bread, pasta etc separate from the other ingredients and use separate utensils. I’m very lucky that they’re so on it. However, I don’t insist on this in restaurants and despite being pretty sensitive it hasn’t tripped me up yet (I mostly eat at home so sort of operating a 99% very strict, 1% still going to live my life approach…)

5 Yes, just be careful not to taste it or mix the spoons up!

6 Yep, tend to go for naturally GF food for all

7 I had checks every few months until the antibodies were down to an acceptable level.

8 Wildcraft Bakery 😍

9 I believe I was ill for 2-3 years. I had a random collection of minor illnesses (hair falling out, damaged tooth enamel, recurrent thrush, other skin problems, mouth ulcers, fatigue, brain fog) and at 21 thought I was just getting old… all cleared up after diagnosis.

A couple of other thoughts - it is a big change to get used to, but you will notice a difference. I didn’t realise how sick I was until I got better.

You may well need to advocate for yourself pretty hard at times as some people just don’t understand how serious it can be.

Take cereal bars everywhere!

First degree relatives should also get tested

You may end up eating a healthier diet overall as it’s definitely easier & cheaper to cook GF using unprocessed foods

Indian takeaways are almost always GF without the naan, Chinese is very rarely GF. Thai & Vietnamese somewhere in the middle - Pho is my favourite restaurant chain!

I didn’t have a noticeable reaction to eating gluten pre-diagnosis. Ten years in and I react very strongly - don’t be alarmed if this is the case for you.

Italy, Spain and Greece are pretty good for GF options. France less so!

Believe it or not, bread is a lot better than it used to be 🤣

Hi @afternoonbiscuit can I please ask what symptoms you had to seek diagnosis as I am worried that one of my dc may have this? Thanks

1. Yes, you definitely need to check and explain you have coeliacs disease so they cook/prepare it away from gluten containing ingredients to avoid cross contamination.
2. If it doesn’t list gluten or say may contain gluten you’re good to eat it!
3. You need gluten free oats, regular oats are processed with other stuff so there’s the risk of cross contamination.
4. Imho you have to be reasonably strict with cross contamination. I have my own toaster, we bought a 2 pot air fryer and one side is mine etc. My friends are all aware I’m gf, so they’ll buy in snacks for me or cook gf foods for me. I generally bring my own snacks if I’m going to need to eat (on a day out for example) as there’s no guarantees I’ll be able to find a food vendor who’ll do gf food!
5. The rest of my family still eat gluten, I just cook mine separately if it’s needed.
6. Certain foods I’ll cook gf like Yorkshire puddings, otherwise I’ll just keep mine gf.
7. You should have a bone density scan (I did) and I have annual blood tests to check that I’m definitely gluten free and my overall health.
8. I haven’t used any dedicated shops online for gf, just the regular supermarkets.
9. I believe pregnancy kicked mine off.

I found it overwhelming when I was diagnosed, and was so bloody furious with the world because I felt completely othered and alone. I got diagnosed 2 years ago and I’m mainly used to it now and have a pretty close diet to what I had before disgnosis.

Lots of good advice here. To add my experience, when eating out there's a big difference between somewhere being coeliac friendly and just serving non gluten containing ingredients. I was caught out by this early days! Check they have a separate prep area to reduce cross contamination - not using same cutting boards and utensils, separate butter/spread.

Lots of foods are naturally gf so don't get caught up with sticking purely to the free from aisle. Rice is gf whether you buy tilda which is marketed as gf or the cheaper variety (careful of microwave ones though)

I can't eat pregrated cheese - there's something in the coating that keeps the cheese fresh and from sticking that sets me off.

Gf pasta doesn't take as long to cook. Cook too long and it turns to soup! Gf bread toasted is more palatable.

I was referred to a dietitian after initial diagnosis and had a bone density scan. Now I just have a yearly blood test. Once you're in the swing of things it's fine. As a family we eat mainly gf and you wouldn't know the difference. The main parts of diet are naturally gf such as meat, veg, fruit. The only hard bit is when I'm not organised as I can't just grab something from the freezer like DH can.

This is the best gf pasta I've found. Even the fussy DC eat it!

@Watermelon999 I think the most common symptoms are diarrhoea and/or constipation, abdominal pain, and slow growth in children. Some people have a rash on their elbows, some have mouth ulcers. Also vomiting. My ten year old is being tested for it at present and it's mainly constant pain near her belly button.

Thanks, may not be then, dc has had low ferritin, tiredness/lethargy, and looks pale. Seems to have bloating and wind, not sure about diarrhoea

@Watermelon999 that all fits too. Everyone is different. My symptoms were bloating, wind, constipation and reflux.

Yes they could all be symptoms too, there's quite a range and people have a different combination it seems. Remember that they need to keep eating gluten until all the testing is complete.