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Finding It Hard At The Moment....

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I'm a teenager at school...

I have been a coeliac since being a toddler so don't know any different.

I am finding it quite hard to follow my gluten free diet at the moment. I am very allergic and even the slightest thing sets me off :( In the last few months I have had several bad experiences with eating gluten.) This has lead me to not trust anyone any more, not restaurants or pubs, not even my mum, who is also a coeliac. This makes me feel really bad.

It's really disheartening to keep fining, what I thought were, gluten free foods have now been changed and are no longer suitable.

Also I have found that more and more manufacturers are saying "may contain traces of gluten/wheat/barley etc." I am very scared of eating gluten, the consequences are not worth it!, and so will not even eat these products.

This is leaving fewer and fewer things I can eat. I know supermarkets are getting better but the choice of 'normal' foods is lower. I am very bored of eating the same things every day. For example in school lunches. Does anyone have any ideas of better things to eat!!!? The other thing is pasta..it never seems to work...does anyone know any good makes I can get on prescription (free as other wise SO expensive!)? At the moment I have juvela which seems okay :)

My friends sort of understand but 'forget' and don't know what its like. They don't invite me round or to parties because they don't know what I can eat, I am too scared to eat it even if they do remember in case of cross contamination etc. It always feels very awkward if I take my own food, rude too.

Does anyone have any advice? I am new to this forum but looked through and seems quite good :)

Thanks puddleduck x

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Hi, Puddleduck

Your concerns sure do sound familiar.

I don't eat much processed food at all. I usually bring dinner leftovers for lunch or make batches of homemade soup or stew and freeze them in single servings. Will your mum let you loose in the kitchen? :) I also throw in some fruit, cut vegetables, nuts, or other finger food. Chunks of homemade cornbread are always good with stew. Before I couldn't eat dairy I liked to put in a chunk of cheese and some gluten-free crackers. If you don't have access to a microwave at school, thaw/heat your lunch at home and put it into a thermos. Zojirushi makes really nice vacuum bento containers.

You can't let celiac come between your friendships. You have to get past feeling awkward/rude. My friends are always happy to know I've taken good care of myself and brought food I can eat. Real friends are much more concerned for your health and well-being than they are about what you eat at a party. I usually find it simpler to eat at home before a party and then bring a snack I can share with everyone like cut vegetables, gluten-free chips and dip, or a tray of gluten-free brownies. My friends make sure I remember to set my share of the snack aside for later, so that they don't have to worry about CCing the rest of it.

I don't know what brands of pasta you have available where you live. I am in the US and Tinkyada is good and readily available.

Also are you sure your gluten reactions are always to gluten and not a result of other intolerances? I thought I was reacting to traces of gluten but it turns out I am sensitive to dairy and maybe nightshades. Soy is another common sensitivity. Just something to think about.

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hello puddleduck & welcome :)

YOU can answer some curious questions for me? i often wonder (if we are born with this disease) if being diagnosed at an early age is more difficult or easier? is the diet second nature for you or were your parents the 'gluten police' lolz i ask this because my son was diagnosed with type 1 (juvenile) diabetes at age 19, well after his eating habits were established. he is now 25 and *finally* taking control of his diet. i wonder if it would have been easier for him to eat properly if he was diagnosed earlier or whether he would be sneaking candy under the bed because he wouldn't understand at such a young age? :D

anyways, do you cook? how old are you? you are in the UK? if you can just keep a backpack with snacks or non-perishible foodies (i also carry little bottles of juice/safe beverages with me) i also have meals in the freezer that a just throw into the backpack if i am going somewhere. i used to evaluate the situation and bring it/not bring it accordingly. after being stuck a few times with nothing safe to eat, i just bring it everywhere now. have you been refusing invitations to places because you are scared of having nothing to eat? me too. but i am an old lady and i am getting over it - just bring my own stuff all the time. yeah,, everybody wants to know what im eating and why <it's wierd, but so very consistent! and they try to get me to eat "this" or "that" i tell them: you eat it. haha!

i think if you don't cook, you should learn. probably the most important thing to keep you eating safe. :)

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Ok, here are a few things I've learned, and my daughter was only diagnosed about three weeks ago (she's ten).

Pasta - try white rice pasta. I have tried all the gluten free types, and she said the white rice pasta tastes even better than the regular wheat pasta I used to use.

Instead of using sliced bread for sandwiches, use waffles. Bagels with all sorts of toppings.

Don't be ashamed to bring your own food to a party. Just say, "hey, I know how hard it is for you guys to get food I can eat so I just brought my own." In some way, just make sure you can put it in a dedicated place where people won't be grabbing it. I've done this for my daughter on a couple occasions. While I'm sure it's a little different talking parent-to-parent, the results should be the same. If they really care about your well-being, they're not going to take offense to you taking care of your health.

To be honest, what I do for my daughter most days is make a tad extra for her dinner, then pack up some leftovers for dinner. Other days I will make a finger food lunch, such as summer sausage, cheese and crackers, some fruit and cookies.

I agree, it's an expensive way to live, but like you said, it's not worth the results to stray from your diet. I imagine at your age you've now started to become more responsible for what you eat and what is happening is that you're starting to realize what your mom has been dealing with. It is a hard adjustment, but it'll get easier I'm sure.

Good luck, hang in there. Stay positive!

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