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🙏🏻

Oops! I have just seen that there is an autoimmune thread so I will post there.

Hey Op!

Also a new coeliac.

I switched all my ingredients in the house so we all eat gluten free for main meals. Was actually quite simple as we cook mostly from scratch so it's just about changing flour and sauces etc and finding replacements for stuff like breadcrumbs (I recommend gluten free cornflakes)

I've jacked in bread, can't find any I like, same with tortilla as well. I'm probably better off for it anyway!

Eating out I always ask for the gluten free options, most places have an allergy menu. You will soon learn what you can and can't have.

The rule is BROW - barley, rye, oats and wheat. Oats is because they are often in the same mill.

I still cook and use gluten food for the kids, I just make sure I wipe down and wash my hands. As I am a silent Coeliac my symptoms aren't as harsh as others can be. I will say though, now I am gluten free I deffo feel it when I have it by accident.

I would advise you to check labels of things like sauces and condiments as that's where they sneak it in.

I've had my endoscopy and results and awaiting my bone density scan. My DR said I will have repeat bloods once a year. I had one recently to check I was managing it (as my TTG was 225) and I am now at 4.5, so it's working!

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.

I have a coeliac friend who comes to stay regularly. Contamination is a massive issue for her, she will get stomach pains and be sick so I am ultra careful.
I cook for her roast dinners, use gluten free flour to make Yorkshire puddings, one of the jar Bisto gravies is gluten free. Fish pie. Casseroles. Loads of puddings and cakes are fine with doves farm gluten free flour substituted.
Often has gf toast for breakfast but done under the grill, it can’t be done in a toaster because of contamination. I sometimes buy her gf croissants as a treat from M&S.

Fellow coeliac here!

Yes absolutely you'd be amazed the things gluten can be in and you need to make sure including asking specifically how they prepare things - do they use separate utensils / cooked seperate area / not fried in the same oil or fryer as gluten containing food. The risk is not just the ingredients themselves but also the cross contamination. Let them know also you are coeliac as opposed to an 'intolerance' it is different. Also with things that could or could not be gf you won't know if you aren't checking.

In general yes you do not need to buy specitically GF if no ingredients containing gluten in and in the UK they cannot hide them but check everything including drinks condiments (some salt!) etc for Barley, Wheat, Rye or Oats and any may contains or not suitable for statements. I don't tend to eat quinoa but would double check as feel like I have seen something about quinoa and lentils in themselves. Double check!

A protein called Avenin in Oats is very similar to gluten so some coeliacs cannot not have oats as react similarly. I am fine with Oats so do eat them (gluten free ones). BUT they must be specifically labelled Gluten Free Oats / gluten free oatcakes etc due to risk of cross contamination.

Yes absolutely you do. Coeliac works because your body starts to attack itself if having gluten. The autoimmune reaction is triggered the same even with tiny molecule i.e. less than a crumb so yes you do! You might not feel the reaction but it is still damaging you inside! This means all the measures you have said above. Seperate boards, toaster, utensils, washing hands thoroughly, not using same spreads / dips etc due to gluten crumbs etc. If eating at others then you bring your own or have a very clear discussion about the measures that need to be taken and you need to consider how much you trust them to do that. I would like to think anyone who cares for you and was making you a meal would want to ensure you are kept safe also. Be particularly mindful of cross contamination with buffets and gluteny fingers grabbing into everything.

I live by myself but eat i.e. at my parents who eat gluten. My view is yes you can but being really vigilant with cross contamination thorough hand washing, wiping down sides etc and possibly making yours / serving yours first to reduce risk of cross contamination.

As above I live by myself not really something I have experience with but I would say generally it is easier to do one thing gf if possible i.e. big pasta bake, meat and veg etc is easy enough. For other things do seperate!

Something I also need to follow up! I believe you should have check up bloods etc so definitely ask about this have you been able to speak with gastro/dietician specifically? I did have DEXA scans for bone density. check coeliac UK I bet there will be some guidance.

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

None specifically from me as I don't tend to but I know there are so do some research!

Not sure re. onset I was always very slim (🙄🤨) and tired but also have other health conditions, but main trigger for diagnosis was anemia and stomach pain quite suddenly. I had not long before though had a significant first flare of Vasculitis auto immune condition and I am curious if in any way linked?) But often was sick (i.e vomiting sick as opposed to sickly) as a child (now I wonder was it due to gluten?)!

Hope this helps 🙂

All as PP except even gluten free oats affect me, not as catastrophic as wheat but I still don't eat gluten free products with oats in.

Thank you so much, everyone, for answering my questions and sharing your tips and personal experiences! I feel like I have more of a road map now and it’s nice to see there’s so much solidarity in this.

I think it will be easyish to manage changing how I cook at home, but I feel like I’m in a foreign country every time I set foot in a supermarket now… and I’m nervous about going to cafes and restaurants. But I’m sure it will all get easier.

Some more questions have popped up as I read your responses:

1. Do I need to get rid of my chopping boards / cooking utensils and use totally new ones? When it comes to utensils things that can be cross-contaminated, is it just porous stuff like plastic and wood, but not metal etc (assuming it’s properly cleaned)? So not pots and pans?
2. To me it sounds like most people don’t eat at other’s homes anymore, or they just bring their own food. Do people tend to be understanding? I’m wondering how it will go down in Russia when we visit my in-laws. There’s little awareness of coeliac or any other gluten issues there, so I think the only way for us to manage is to rent our own apartment when visiting and have me cook all my own food. My MIL often gives us homemade jams and pickled things - I suppose I can’t eat those sort of gifted foods anymore because I won’t know how they were made?
3. Speaking of travel, do you tend to rent apartments and avoid hotels so you can cook for yourself? Do you bring your own chopping board / wooden spoon along so you know they won’t have gluten traces on them?
4. Can I cook a gluten-containing dish in the oven at the same time as I cook something GF?
5. Is the “May contain” issue a matter of debate among coeliacs - some people will eat these products and others won’t?
6. I’ve seen a lot of advice to have my close family members tested and I’m particularly concerned about my son potentially developing coeliac. He is only 15 months old, so a blood test would be tough at his age. I read somewhere that screening tends to start at age 3 if a child is high-risk, and earlier only if they have symptoms, and that they should be regularly screened. Does anyone have experience of testing their children and monitoring them even if they test negative?

So I will use anything for Dd which can go in the dishwasher inc wooden spoons. If I was only handwashing wooden spoons I’d get her some of her own. But pots and pans, plates, cups, plastic stuff I’d be happy using even if only hand washed.

people do tend to be understanding, I’d be very wary about home made food gifts especially pickles, vinegar often has barley in I think.

we do go to hotels and eat in the hotel restaurants but I would always check tripadvisor, you can search for gluten or coeliac in a hotel or a restaurants reviews. I’d only go to a hotel with decent reviews on the subject. I wouldn’t bother taking my own stuff with me to an apartment but would take toaster bags. I wouldn’t use a wooden chopping board

yes, you can cook stuff in the oven together. As long as not touching or dripping.

yes, some people eat may contains. Some people are silent coeliac with no symptoms or only get mild symptoms so take the risk. Dd won’t for most stuff. When recently diagnosed she tried it with some crisps once and then was vomiting loads so it put her off. However she was eating “this isn’t bacon” for ages before realising it was a may contain and because it’s never made her ill she carries on.

im not sure about testing such small kids. Iirc Dd had a poo sample test first and something in that was raise…..fecal calprotectin? Then they did the blood test. You could maybe ask the gp about poo test first and then have a blood test if that’s raised? Or if no symptoms wait till he’s older. Also the saliva in a 23andme test will say if you have the gene for coeliac disease (you can have the gene without having coeliac disease, but if you don’t have the gene you can’t ever get coeliac disease). But I don’t think you can test minors due to their rules. So I know for a fact I don’t have the gene and won’t ever get coeliac disease. Dd must have got the gene from dh. Who until recently we didn’t think had coeliac disease but he has recently developed symptoms and I’m trying to convince him to test.

Thanks, @CormorantStrikesBack! May I ask how old your DD was when diagnosed and what symptoms she had? Thank you for telling me about the stool test. I might raise this and genetic testing with a specialist as a first step for DS.

Yes
No (but up to you if you want to risk it)
Gf oats
Cross contamination - I have my own toaster. I just make sure I wipe down surfaces and wash things that had gluten on before I use them. I went to university and shared a kitchen and was never contaminated.

Yes
I have a separate gf meal or sometimes everyone has a naturally gf meal.
Up to you
I don't buy online - Asda and Tesco have a good selection.
I don't think those symptoms are related to coeliac disease. I also lost weight very quickly after giving birth but I'd been gf since my late teens. Gave birth in my mid 20s. I have painful cramps and nausea if I accidentally consume gluten and this has been the case since my early teens but I didn't know what was causing this.

My dd has coeliac, diagnosed in year 5 so when she was about 10. We were referred to a dietician who gave us some useful advice. We've been told that "may contain " is an absolute no-no. We joined Coeliac UK - if you take out membership you can download an app and use it to scan labels in the supermarket, very useful. Plus they have a lot of info on their website. If you take out membership they'll also send you their guide which lists products broken-down by supermarket, and also restaurants that are on their approved list.

DD is much older than your DC (secondary school) and is good at managing her condition, checking labels, using the app etc.

We share butter, jam etc but never double dip. We also share all utensils but she has her own waffle maker (1st world issue, I know 😉) and I am just really careful when cooking.

I don't know what it's like to be an adult with coeliac cooking for a family, but I do remember that dd was given some wheat flour to use in food tech (yes, annoying) and must have consumed some inadvertently as that triggered symptoms.

We do eat out and have found most places quite good and switched on, from chains to small independent cafes.

She hates all the gf bread but other than that, she manages fine. The main supermarkets have good ranges of gf food (Asda is especially good imo) and you'll get used to knowing what you can buy from the non gf ranges. Barley malt caught us out a few times in the very early days (before we had the app).

Good luck.

Oh and I forgot to say - dd doesn't use our toaster. She doesn't have her own but just uses the grill with a bit of tin foil.

Some great advice here and no need for me to repeat.

My tip is don't just stick to the free from isle in supermarkets whilst they are good for pasta, bread etc that usuallly contain gluten they are are also full of overpriced products that don't usually contain gluten. Do check the labels properly.

I have had coeliac diagnosis for over 15 years now. Also suffered from anaemia for a long time and only diagnosed after pregnancy.

Most issues I have are on holiday where you need to be extra careful. We use hotels rather than apartments and most will provide a good gf breakfast which you can raid for snacks and lunch. We do this openly and with permission as GF lunches can be hard to find when out and about. Watch out for Oat milk which is more common abroad and often used without you knowing!

Italy is a brilliant place to visit if your coeliac,
we go self catering on holiday as I can manage my diet more easily and have a back up for lunch/snacks.
No need to throw away your current chopping boards
we have two toasters and bread bins, and no double dipping in the jam or butter

I wanted to say a big thank you to everyone again for all your advice! It has been so helpful. The last few posts on travel have been useful this week, as I am in Italy with DS right now (already feeling that gluten is mentioned much more clearly on packaging here than in the UK and everyone seems to know what coeliac is).

It’s been almost two weeks since my diagnosis and I am beginning to come to terms with it. I had some blood tests in a private lab here and asked about testing babies: they said you don’t generally test until age 3, as their immune systems are not fully developed until then and they said something about the fact that I’m still breastfeeding (my Italian is okay but failed me a bit here…). So I’m not sure about testing DS yet but hope to see a specialist myself soon and will ask more then. My parents both tested negative! My twin was tested in the past due to bad IBS and was negative, but wasn’t having much gluten at the time so should probably get retested.

If you're staying somewhere else or at the office and want toast, I use toaster bags - those little bags you're supposed to use for toasting sandwiches. They come in a set of 2. I can never find them when I'm looking for them. They're often hanging randomly on some random supermarket aisle so I just buy them when I see them. They'll come in handy eventually. At home, I have a toaster with 4 sections so one side for gluten free and one for gluten.

It's really overwhelming and really difficult to have to figure it all out at the start. It'll get a bit easier with time.

In terms of reactions, I've noticed I'll react more if my stomach is empty. I've had a bad reaction the next day from pasta getting cross contaminated. But I've eaten the wrong brownie (by accident!) after dinner and been fine. I don't know if it's the same for everyone but sometimes that will influence my thoughts on "may contain". Otherwise it's best to avoid whenever you can obviously as gluten will still damage your body. My brother is a silent coeliac and is a lot more careless about contamination. No obvious reaction doesn't mean your body isn't reacting internally.

I had a bone density scan at the time of diagnosis. I only had bloods done at the time of diagnosis and wasn't told to repeat them. Then I changed GP who wanted to check as they hadn't been done for about 5 years. Results were fine and that was about 3 years ago. No mention of another test since but I think I'm relatively healthy anyway. I'd get them done if I was having health issues just to rule gluten out as the culprit.

I can't help with most of your questions as I don't have the relevant experience but my daughter has multiple food allergies and when she was showing reactions to gluten/wheat she had a blood test for coeliacs. I can't remember how old she was but it was around 18 months. She then had stool samples tested at 2.5 when she developed toddler diarrhoea. Both came back with normal results for a while we had to limit the amount of gluten/wheat she and but that resolved itself. Her paediatrician initiated these tests.

Just something to note because you said your GP just told you the results. Have you had an endoscopy yet? If not you must keep eating gluten till you've had one. Your GP will need to refer you to a gastro consultant.

Too many GPs tell people to go gf after a blood test and then they have to go back to eating gluten sometimes after months of being gf. Symptoms are often way worse after time off

She was 16yo. Was having stomach pains, vomiting small amounts most days, anaemic. I think she was coeliac for at least a decade before diagnosis. She used to be sick in her mouth a few times every day even when she was in primary school. The doctors weren’t interested.

I might be wrong but I think guidelines are starting to change now and that a diagnosis can be done if the blood test is over a certain level without doing the endoscopy. Sure I read that somewhere, it’s been the case for kids for some time but they’re bringing it in for adults as well.

In my dd's case they diagnosed with 2 blood tests.

Kids are often two blood tests but adults are still an endoscopy AFAIK. Tbh an endoscopy can also tell you how much damage you have too so I'd opt for that personally.

Either way it'll be the gastro consultant who decides not the GP

@icclemunchy @Pigeon851 @CormorantStrikesBack I was diagnosed by anti-ttg (120) and a positive EMA. The GP said because my ttg was over 100 I didn’t need an endoscopy, but I want to see what a specialist gastro says because I’m also wondering whether it’s worth seeing the extent of the damage. I’d also like a bone density scan. I’ll post back here once I’ve seen someone in case the info will be helpful to others, also about testing DS.

@CormorantStrikesBack Your poor DD! That sounds awful. I’m glad she got diagnosed in the end. DS doesn’t seem to have any symptoms, though on the height/weight charts he is lower than he was before 6 months, but I know children can fluctuate there. I suppose even if he can be tested now that we will have to monitor him always, as he could go on to develop it down the line.

Hello again. I’m meeting the dawn with a sick toddler who needs to sleep upright, so perfect time to get a few things done! I have three new questions and wonder if anyone can help?

I’m struggling to find buckwheat that doesn’t have a may contain warning (also red lentils and split peas). Is it possible just to wash things very thoroughly to remove risk of contamination?

Can I still order milky coffees in cafes? It just struck me that they use the same milk frother pipe thing for dairy and alternative milks like oat, and the oat milk won’t usually be GF…

What’s the deal with spices? I’ve noticed most brands you buy say nothing of allergens. I also have a bunch of Asian products that don’t mention allergens and are produced in China. I assume those are high-risk? (And generally anything made in countries that don’t have strict laws about allergen labelling).

Off to Thailand next week so my coeliac travel skills will be properly tested for the first time!

Have you tried Holland barrett for lentils, etc? They do gf ones I think. Some people happily wash. Coeliac U.K. used to recommend washing but now they don’t.

a good barista should be blasting the frother with hot steam between drinks to clean it and also wiping the outside. This should get rid of the residue. I do know some people stopped getting drinks in Starbucks when starbucks started providing oat milk. Dd still drinks at Starbucks and has never been ill and she’s very sensitive. I think some chains may still not offer oat milk?

spices, I just check the labels. If there’s nothing on the labels I use it. I have come across the odd “may contain”. Anything sold in this country even if made elsewhere should be complying with U.K. labelling laws.

enjoy Thailand. I think you’ll be ok. Avoid any soy sauce dishes but stuff is so freshly cooked and rice based dishes. Have you got a gluten free translation card?