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Super sensitive coeliac: grateful for advice

Starjump profile image
35 Replies

I’m recently diagnosed as a super sensitive coeliac and can’t have oats or any traces of gluten. Ive slipped up recently a few times with some cross-contamination. (Crisps, a stock cube)

When I’m home it’s generally ok, but I’m struggling to know what to eat at breakfast. Just an egg without toast doesn’t feel enough! And lunch in the office has been a challenge. If anyone has any good ideas, I’d really love to hear.

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Starjump profile image
Starjump
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35 Replies

Hello Starjump and welcome to my world, you are a coeliac who cannot tolerate gluten full stop. You are only classed as super sensitive because you cannot tolerate allowed levels of gluten just like me and many others.

Unfortunately it is how codex is interpreted and in the UK many things are classed as GF that are not in other countries. Malt vinegar malted cereals...🤢

The best thing that I veer did was abandon the UK charities food list as that is full of allowed levels of gluten. Oats are very also controversial and not all countries class them as gluten free or suitable for coeliac and I can't tolerate them so no worries there. When all coeliac organisations agree that oats have the potential to make coeliac ill...

In my opinion the coeliac who are most sensitive are ignored by the UK charity when we are the ones who need the most support but thats just my opinion and experience.

You have to be careful with with wheat derivatives as they are not listed as a wheat derivative so you have to avoid maltodextrin and many other artificial sweeteners.

Now the good news you can make your self many things for lunch like potato or pasta salads with vegetarian or meat depending on your taste.

I make a quiche with mashed potato as a base and have put lots of recipes that do not contain allowed levels of gluten on the HU Healthy Eating community please see:

healthunlocked.com/healthye...

And here's a link to HE gluten free Topics so lots of healthy choices for everyone:

healthunlocked.com/healthye...

So please feel free to join us as you will find many things that are gluten free made from scratch so are healthy and pack a nutritional punch I also make all my own bread so do not go without anything.

As for allowed levels of gluten coming from a scientific background no one can convince me that allowed levels of a toxic carcinogen is totally safe but some coeliac seem happy with malted breakfast cereals codex wheat and thats their choice my choice is a whole food diet free of gluten. I love quinoa and thats a very healthy complete food.

I hope this helps.

Jerry. 😊

Starjump profile image
Starjump in reply to

Thank you! I will check out those links now. How do you manage to have bread? I’ve been told no flour of any sort, buckwheat, rice, nothing... I miss bread so much!

in reply to Starjump

Rice and buckwheat are gluten free if they’re not contaminated.

Starjump profile image
Starjump in reply to

They should be, I agree. But the doctor said that often they are made in factories where there is gluten so to stay clear in case of cross contamination . I’m not sure if that is for ever or just until things settle down. Hoping the latter...

in reply to Starjump

I eat them and can't tolerate oats or malt so I buy Doves farm and they're OK for me.

So good luck.

Cooper27 profile image
Cooper27 in reply to Starjump

I think your doctor hasn't given very thorough advice here. A gluten free flour should have no risk of cross-contamination to allow it to be marked gluten free. You can eat rice flour, buckwheat flour, gluten free flour blends, coconut flour etc, but you just have to be vigilant for any "may contain" warnings and avoid any that contain codex wheat starch.

Narwhal10 profile image
Narwhal10

Hi Starjump,

Yes super sensitivity to gluten can be rather challenging. Recommendations even include getting partners to brush their teeth before kissing.

Breakfast wise, how about basing it on a full English ?

So eggs, mushrooms, tomatoes, baked beans, Linda McCartney Rosemary and red onion sausages are gluten free.

Or a version of Eggs benedict - smoked salmon, eggs, rocket.

Fruit, yoghurt (you don’t mention lactose intolerance) with some nuts.

😃

Starjump profile image
Starjump in reply to Narwhal10

Yes! Why am I not cooking a fry up every day?!

Narwhal10 profile image
Narwhal10 in reply to Starjump

Hi, no idea if you are being sarcastic 😂, it does takes a LOT to offend me.

For me fry ups turn my stomach, grilling is lovely but depends on how much time and energy you have. Recently, I was very into scrambled eggs cooked in coconut oil. (Coconut is good for inflammation, apparently).

Another suggestion is looking at Eastern diets, I lived in SE Asia for a bit so rice was the norm for all meals. 😃

Starjump profile image
Starjump in reply to Narwhal10

Not sarcastic at all! Eggs and bacon would be perfect. I’ve just got a bit lazy abort cooking first thing. But as soon as you said that, it sounded delicious. Already planning tomorrow’s breakfast!

Narwhal10 profile image
Narwhal10 in reply to Starjump

😊

in reply to Narwhal10

Linda McCartny sausages contain soy which is a common source of cross contamination. The website also states these may contain traces of wheat. Definitely not gf.

Narwhal10 profile image
Narwhal10 in reply to

Whoops - Thanks Mise- I knew the original ones had gluten in but thought the red onion and rosemary were ok 😕.

Another food to leave on my neighbours doorstep.

in reply to Narwhal10

It's so annoying when they keep messing around with recipes, and when one type ok, but new line of products not. They sound lovely though.

BabsyWabsy profile image
BabsyWabsy in reply to

There are plenty of decent gluten free sausages about these days, if you are a meat eater. All the supermarkets have own label ones, even the discounters. M&S have them too and there are branded ones e.g. Heck. If you are new to GF you may not have noticed this before.

Cooper27 profile image
Cooper27

We often eat yoghurt with frozen berries and granola for breakfast (you can get some brands that are completely GF) or I might bake some kind of sugar free banana bread/scones.

Lunches tend to be soups, salads, fried rice dishes, reheated baked potatoes (it depends on if you have a safe microwave at work).

I have to say I find coeliac UK a bit unhelpful for breakfast and lunch ideas. Their suggestions are "tuna sandwich, egg sandwich, cheese sandwich on GF bread", as if we needed a website to tell us that.

I find it helpful to look up things like paleo breakfast/lunch ideas, as they are all gluten/grain/sugar free and made from foods that are naturally GF, therefore with less risk of cross contamination.

Munchkinfeet profile image
Munchkinfeet

I am on low fodmap, so I am gluten, lactose and sugar intolerant, and I make myself banana bread with gluten free flour, raisins, eggs etc. It is to die for. I eat it almost every day for my 11am brekkie with a coffee. I have been baking it for 6 months, once a week and I never tire of it. Got the recipe from my nhs dietician. Otherwise I make gf pancakes or have lactose free yoghurt with fruit.

I am generally too unwell before 10am to eat proper breakfast so my brekkie is more of a brunch

Tabbyme profile image
Tabbyme in reply to Munchkinfeet

Any chance of the recipe? Sounds lovely. Not sure if I will be able to make it as not well but partner is home right now due to covd19 so he can help 😊. Pretty please 😉

Munchkinfeet profile image
Munchkinfeet in reply to Tabbyme

I'll try take a screenshot of it x

Munchkinfeet profile image
Munchkinfeet in reply to Tabbyme

Oh how do I do that

Littlebee profile image
Littlebee

Hi Starjump I wonder if you are talking about non- responsive cd? I'm in this category so I am extremely strict about cutting out codex foods although I do have gf oats now. I've never fully healed despite being on this super strict diet. There is information on the coelic UK website you just have to search for non responsive or refractory cd. There is research being carried out and a great article in the magazine not long ago about this category. There are many reasons why a person doesn't respond and I think mostly it's cross contamination issues but sometimes there is something else going on and it's worth continuing to see the Dr to try and find out more. Don't give up.and I wish you luck.

Starjump profile image
Starjump in reply to Littlebee

Thanks so much for this. Made me feel a lot better. Yes, I think I’m in that category. Struggling endlessly with cross contamination (and boring food!) I will look up that article. Many thanks again

Hi Starjump.

I'm in this category also, but still struggling to get proper doctor input on whether it is trace gluten or other components in food. I've never had formal diagnosis of coeliac so makes it even more difficult.

I avoid all products containing glucose, fructose, maltodextrin, and other ingredients that may come from wheat source. Also be aware of supplements that contain vitamin e (can be wheat germ), etc. This is the hidden hidden gluten and do not let anyone argue with you that these are so processed that they no longer contain gluten - that is a load of the proverbial. Similar to Jerry I don't buy this notion of 'super sensitive' or the idea of a 20ppm codex level - coeliac is coeliac, and needs to be 0ppm for everyone.

You mention you were told to avoid all non-gluten grains, rice, etc. Was that for risk of cross contamination or that these are somehow also effecting you? I went to a dietician last year who said to avoid lectins also, so those foods would be a source of those.

I'm getting better again with non gf-grains, so I can more or less tolerate making my own bread/pancakes with GF flour. You need to shop carefully for these and check with manufacturers if there are gluten grains in same production. The best one I've found is Freee from Dove Farm who state this is produced in a separate building/facility from the normal flour.

I've avoided all grains/gf grains for about 6 months until recently and also found I couldn't eat rice or normal potatoes. Found the only carb I could have was sweet potato so ended up just cooking sweet potatoes and using them to make a frittata with for breakfast, or spanish omelette. I have got used to just having a three egg omelette for breakfast on a lot of days. Unfortunately in the absence of grains, breakfast is a confusing issue. It's worth checking out the lectin-free diet also, and the paleo diets as these, I've found, provide more sensible information than the gluten free websites. And, above all, just ignore every single thing that Coeliac UK say or state is ok - I would happily see them shut down for the junk they peddal and the lies they perpetuate on their version on gluten free.

Penel profile image
Penel

Hello Starjumps

I often make pancakes for breakfast, both large and small. They can be topped with sweet or savoury, depending on your taste.

I like to use buckwheat flour, and one of my favourite toppings is lactose-free soft cheese spread and smoked salmon. You can also use chickpea flour or Doves Farm general purpose gf flour. I make my own granola using buckwheat flakes in stead of oats.

The most popular breakfast in our house is probably a fry-up: egg, bacon, tomato, red pepper, and sometimes sweet potato.

Lynilou profile image
Lynilou

Hi there,

Along with coeliac disease and as someone who can’t eat oats, I’ve also been diagnosed as highly prone to acid reflux. I can’t eat anything from the nightshade family which rules out potato for me.

My daughter found out about kefir, and this has helped me so much.

For breakfast for the past 2 years I’ve had a kefir smoothie with goats milk kefir, banana, and blueberries. Easy to make and it keeps me going until lunchtime. Along with a bland diet it helps keep the reflux under control too.

Starjump profile image
Starjump in reply to Lynilou

I haven’t ever tried kefir but several people have suggested it. Sounds like I should give it a go. Glad it’s helped you.

Lynilou profile image
Lynilou

It can be an acquired taste! But if I miss a day I crave the taste strangely! And the banana and blueberries ( and I add vitamin enriched flaxseed) add sweetness and extra nutrients. I buy raw milk still fermenting via the internet which is very fizzy, but you can buy kefir from supermarkets which has stopped fermenting and has a creamier and softer taste. I believe it helped with my gut healing and continues to build gut health. I can recommend.

Catatvet05 profile image
Catatvet05 in reply to Lynilou

Hello, sorry I’ve noticed the conversation ended 2 weeks ago but wanted to ask, if that is okay? You mentioned about having acid reflux issues? I have serious issues- it’s constant 24/7. I’m surprised you can tolerate dairy since I can’t. In fact, I can’t tolerate a lot of foods. Some of the recipes definitely are great ideas. Gluten I cannot tolerate either.

Lynilou profile image
Lynilou in reply to Catatvet05

Re acid reflux.. I was in a and e 2 years ago with chest pain which turned out to be reflux- embarrassing, I kept saying it wasn’t my heart but they wanted to check- back for an endoscopy and coeliac was under control but diagnosis said prone to acid reflux. I can’t cope with much dairy at all either but the kefir is from goats milk. I can honestly say finding it was a turning point for me. I’ve since added other fermented foods such as kimchi and kombucha to my diet. I still get occasional reflux but nothing like I used to, coeliac is well under control and health seems good so I can’t complain at all. Thanks for following up, hope you’ve found something good for breakfast x

Catatvet05 profile image
Catatvet05 in reply to Lynilou

I’ve had chest pains too. I’ve been tested using most of what is required according to my GP. I’m on Amitriptyline now because apparently the cause is down to ‘stress’ - it’s not acid reflux. I still got my reflux issues. 💁🏻‍♀️ The pain has decreased though since I started but do occasionally get pain. I tried kefir but maybe I should consider goats milk? Supposed to be better for the digestive system? I will keep it in mind. Many thanks for getting back.

Lots of comments that have failed to address your question, which was what to have for breakfast in absence of grains/gf grains. Also lots of people implying because something is ok for them, it should be ok for you!!

Try:

- Banana pancakes (no flours)

- Cornbeef hash (made day before/freeze in advance)

- Avocado, bacon and a few other bits and bobs

- Almond flour pancakes/muffins/flat breads

- Omelettes

- Fritata can be made in advance and frozen.

- Yogurt smoothies.

I'm on paleo diet so that is quite good for frontloading your day with good fats and protein. Takes a little bit more prep, but lots of things can be made in advance.

Starjump profile image
Starjump in reply to

Thank you so much! That is SO helpful

Hi Starjump. Just to add (I've already posted), I mentioned I'm in super sensitive zone also, and also struggle with certified gf flours (unclear if this is even down to cross contamination, and may not be) - I've just tried casava flour and had no reactions, so this may be of interest as an option. Works just like normal flour and used a brand called 'Neo Flour' which has a 100% gf production/processing facility. There are some issues with casava being a possible source of cyanide (ekk!!), but as an occassional option, I can definetely recommend this: neoflour.com/product . It's very pricey, unless you can find a cheaper brand. Was £8 on Amazon (prime delivery so free).

I also have super sensitive celiac disease.

Get some AIP (auto immune protocol) recipe books. Also lots of AIP breakfast and lunch ideas in the Facebook AIP support groups.

A good website is ThePaleoMom.com

Missbrowneyes profile image
Missbrowneyes

I would recommend cornflakes own brands can be ok. Obviously get the gf app on your phone. But the GF ones are fine. I have blueberries. Then snack apple mid day. I get hungry and I always have some mixed nuts in the house. Cooking with spices have been great for me some flavour essential. Cheese and gf cheese crackers are always handy for when you need to eat something crunchy. It is hard. Good luck

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