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🙏🏻

Thank you so much, everyone, for answering my questions and sharing so many 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?

Hi @Watermelon999, what led to my diagnosis was low ferritin and sudden unexplained weight loss (6kg lower than my norm). I’m 33 and suddenly weigh what I weighed at age 15 or so. I could add tiredness, weakness and brain fog to that too, but that could be new motherhood. I’ve never had issues with my stomach, ironically.

The more I think about it, the more I wonder if I have actually had this for many years because I have had certain chronic or recurring issues for over a decade that I see mentioned by others: thrush, wind, restless leg syndrome, iron deficiency / anaemia, depression, anxiety, irritability, headaches from age 11, anal fissure. But who knows, maybe they’re unrelated!

I would second a PP's comments about getting your DC tested at some point. After I was diagnosed my children were tested (one with symptoms and one none) and both have turned out to be positive. I was told to tell my parents and siblings to get checked too.

Thanks, @Kingfisher5, I definitely want DS tested but will ask a specialist when/how to do this, as he is so young. Might start with a genetic test, and someone else mentioned a stool test before going for a blood test. My parents got tested yesterday and are waiting for results, sister has tested negative previously but will do it again!

@Kingfisher5, can I ask how old your children were when diagnosed and what the symptoms were?

7 and 5. Both diagnosed through a blood test.my 3 year old is having her blood test next week so we will see if it's a full sweep! The GP sorted the blood tests, very quick and easy, and they had the numbing cream.
My DS is tiny for his age, which is what led us to get him checked. He was born on 70th centile but is now, age 7, under the 10th centile. He started dropping the centiles at about 18 months, but I thought it was just him losing his baby chub and he seemed healthy so not a concern. We weren't originally going to get my 5 yr old DD checked yet as no obvious signs but consultant said we had to. Glad I did!

@afafternoonbiscuit Picking up on your questions about travel, it really depends where. For flights, you can book a GF meal,. I always take snacks just in case the specials weren't loaded, but it's never been necessary.

We've booked an apartment a few times in Belgium, which is not the easiest. France is ok, Spain and Italy are great, with a larger number of diagnosed coeliacs, so provision is good. Japan was really difficult outside Tokyo, so we ended up doing a cruise (ships are generally great). It's the amount of soy and also the stealth wheat in rice in Japan.

We tend to go for apartments in the US...big cities are ok, others are less so. Chains like Hard Rock and Chilli's are fine, but the only thing I could eat in a BBQ place in Memphis was a side salad. Supermarkets generally have a GF section, especially in Spain and Italy. There's always a possibility of something...in the middle of nowhere, Tennessee, I ended up with a burger (no wheat, no bun), which was clearly so odd that the kitchen staff trotted out to see the strange Brit.

You can get translation cards into all kinds of languages explaining you are coeliac and what you cannot eat, and also join the local gluten free group for your destination. For example, I'm on the Brussels one, as we go there quite a lot. And the Japan group were really helpful with the kanji when my phone wouldn't translate.

By local group, I meant FB group. It's about all I use FB for.