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Coeliac Rant

(27 Posts)
Didthatreallyhappen2 Mon 05-Nov-18 10:17:11

Diagnosed coeliac in the summer. At that time I felt completely overwhelmed and posted on here to say that. I was absolutely inundated with messages of support, useful advice, websites to look at, recipes etc. YOU ARE ALL AN AMAZING LOT! THANK YOU!

3 months down the line and I need a moan, no, sod it, a full-blown RANT. I am tired of going out and there being only one, single, icing-encrusted, 20 year old (looks like) cupcake that I can eat. In some weird flavour (ginger, lemon and berry anyone?). I am tired of there only being one thing on a menu I can choose (butternut squash with hot Malaysian curry paste - fine for some but not for me).

I am absolutely fed up of being lumped together with people who make dietary choices of their own free will. I have no problem with people being vegetarians or vegans - I have wonderful friends who are both and I have been educated in what they can and can't eat. But my gluten-free choice is NOT a choice. I have NO CHOICE. This is an allergy, not even an intolerance. And a bad allergy at that. There is no way I would have chosen to miss out on all that lovely bread, cakes, cornflakes, even Smarties ….. I want to shout at the waiting staff in the coffee shops that I didn't choose this, so don't offer me a single carrot to munch (this has happened) because there's nothing else I can eat.

I don't want my lovely DH to miss out on a snack simply because there's nothing that I can eat and he doesn't want me to go hungry.

Why does everyone assume that I will be happy with a nut bar when what I really want is a doughnut?

There is a plus side - of course. We've discovered restaurants that have a full gluten-free menu, not just the odd, weird choice. Friends and family turn up with GF biscuits, take me to GF cafes and generally don't treat me like I'm odd.

I will get there, but am having a bad day …. Thanks for listening.

OP’s posts: |
Bluebelltulip Mon 05-Nov-18 10:26:36

I completely agree with you. Most of the time I'm happy to put up with lack of choice and things that I can't have anymore as I have absolutely no desire to go back to the pain I used to get. Other days it's really gets to me that I have to pick what I can eat when out not what I want and I really miss certain foods. One really bad day I cried because I couldn't face another jacket potato for lunch (also pregnant at the time which didn't help).

strawberryalarmclock Mon 05-Nov-18 10:46:07

I get sick of people thinking I'm on some faddy diet. I once was told by someone in a m&s cafe that 'I was too thin to be on a diet' when requesting a gluten free roll 
I'm thin because I don't have the same access to the delicious and fattening food that most others do!!!

Sarahani Tue 06-Nov-18 23:01:35

It's hard never having what you fancy and getting the only GF sandwich thrust upon you but you do get used to it. Although it's completely changed my relationship food.

That said it's so much better than it used to be but I still get visibly annoyed when they say GF burger on the menu but you can't have the chips or the bun. Righto. Not quite the same then!

SputnikBear Tue 06-Nov-18 23:06:32

Coeliac disease isn’t an allergy though. It’s an immune system disorder. Your doctor hasn’t given you much info about your condition if you think it’s an allergy.

Didthatreallyhappen2 Wed 07-Nov-18 10:38:54

You are right of course SputnikBear. I am very aware that coeliac disease is an autoimmune disease. My consultant has given me a huge amount of information on it, its control, side effects etc etc.

However I do refer to it as an allergy. In the wider world, when asking for anything that is GF, it is far easier to reply that I am allergic to gluten when asked, rather than trying to explain what an autoimmune disease is. Allergies are something that everyone can understand, especially when some, such as nut allergies or bee stings, can have immediate and devastating consequences.

On this site though, given the collective knowledge, I should have referred to it using its correct definition. I apologise.

OP’s posts: |
SputnikBear Wed 07-Nov-18 11:18:35

I just thought they hadn’t given you sufficient information.

I’m actually really happy to have even one option in a restaurant or cafe. I’ve been gluten free for 15 years and back then nobody even knew what gluten was. Shops didn’t have gluten free ranges. Restaurants weren’t required to know what was in the food they served. Literally nowhere had a gluten free menu. The only way to get bread or flour was on prescription. You had to carry snacks everywhere in case you couldn’t get any food. When you were diagnosed the hospital would give you the email addresses of a couple of helpful local coeliacs who would advise what was available in nearby shops, and we used to pass information between ourselves. I still recall the joy and relief of the email advising me that someone had discovered that M&S sausages were gf!

Nowadays most people know what gluten is and you can get some sort of food pretty much everywhere. I no longer carry snacks! I do think it’s been driven by gf being “trendy” though, not because they care about people who need gf food for medical reasons.

SputnikBear Wed 07-Nov-18 11:24:19

Also you may not have discovered this yet, but being gf is better in the long run. You won’t get fat (or as fat as you would have done anyway) because you can’t eat treats and can’t afford large quantities of gf because it’s more expensive. A lot of times you can’t have pasta in a restaurant so you get to order steak. You start reading labels, realise how much crap is in food and end up eating healthier. You learn to cook at home. So many positives!

weasle Wed 07-Nov-18 11:28:29

I hear you OP.
A friend asked me recently 'are you still gluten free'. It's a bit tiresome everyone thinking it's a choice or that I'll grow out of it! I'd love a doughnut or croissant and sometimes I'm fed up that I can't.
I try to be positive that it's not the worst autoimmune disease to have and at least has a treatment that has no side effects other than doughnut longing!

Troels Thu 08-Nov-18 16:16:48

I'm only a few weeks into being GF and I'm slowly losing interest in food. I do fine at home, I can cook pretty much anything we normally do last night we tried GF spaghetti, loved it. Other than that I'm now wandering about town with a banana and some GF rice cakes (topped in yogurt from Lidl) in my bag just in case. Not sure if it's the lack of interest, or eating GF, but I'm rarely hungry anymore. Twice in two weeks I ate out and both times it was a baked potato. Boring!
I actually feel a bit embarrased and asking for a different menu, even though the staff in the cafes I've been in have been wonderful and strangely knowledgeable. Even checking packets in the kitchen and making sure theres no cross contamination. It still doesn't feel real, like someone is going to call me a liar and say I'm just fussy.

MollyHuaCha Thu 08-Nov-18 16:23:45

Choices and availability are better than they used to be.

Keep asking in tea shops/restaurants/hotels and the range will get better and better.

bananasaremyfriends Thu 08-Nov-18 16:42:44

With all the kindness I can muster...pull yourself together.

You can still eat gluten 'free' processed food, with 20ppm of trace gluten. You can still have a drink or food made by someone else out of the house. No, its not the same as donuts and real bread, but you can eat spices, gf biscuits and the like.

I developed dh. The unbearably itchy skin rash. I couldnt tolerate the medication, and became very unwell.

Im glad there was a solution that worked for me. Whole foods only. No processed foods, no spices. No meat cut on the same area as they do breading or spicing. I was reacting to any trace gluten at all.

Veg, eggs, butter, cheese. My stomach can now handle some meat, some fruits, apples and more acidic fruits still caused the dreaded d. I cant eat nuts, due to levels of cross contamination, choc is out, same thing. The rash is luminescently painful. My feet are involved. I flared up over daring to eat a 10ppm cookie. Not even a whole one.

So be glad you still have some foods.

Im constantly fucking hungry.

Didthatreallyhappen2 Thu 08-Nov-18 17:11:45

Bananas - you are absolutely right, and usually I do just get on with it. Without going into details, my GP thought I had cancer (and told me as much, with very limited hard evidence to go on). So I had a hellish time until I was diagnosed coeliac thinking I had cancer. And yes, of course there are things I can eat (and I am actually losing a bit of weight too, so for me that's a silver lining).

My excuse is that I was having a bad day when I posted originally. I can't imagine having a more limited diet than I have now, and I am truly sorry that you've had such a difficult time with it all. I hope that you continue to improve, even if it is slowly.

Troels - I've had the opposite problem, in that I'm constantly offered things that are highly spiced, which is not what I would choose. It still doesn't feel "real" to me either, although I have had some success with getting a couple of places to change either their menus or their ranges to take GF into account. Small steps ….

I've often thought that if someone very high profile (celeb or royal family maybe) announced they were GF then suddenly the world and his wife would jump on board. Maybe someday?

OP’s posts: |
bananasaremyfriends Thu 08-Nov-18 17:53:39

Im sorry I was crabby. It is miserable and life altering.

The problem with the hipsters and dieters jumping on the gf bandwagon is that people then dont take it seriously. My illness is not their fad.

Ild love for gluten free to mean zero gluten, not 20ppm.

Eat what you can while you can! You may find your sensitivity increases over time too....

CMOTDibbler Thu 08-Nov-18 18:10:27

I've been gluten free for 20 years now, and though things are immeasurably better than they were (I cried when gf fish fingers first came out), I still have the occasional tantrum/meltdown about it all. You don't realise how many events involve food until you have to think about it, and I hate the posh meal events which have been spoilt by me being gf.

SputnikBear Thu 08-Nov-18 18:14:04

Lots of celebrities are GF. Some are reportedly “gluten intolerant” such as Victoria Beckham and Rachel Weisz. A few have actually admitted they have coeliac, such as Zooey Deschanel and Emmy Rossum. And there are dozens of others who just don’t eat gluten - Jessica Alba, Scarlett Johanssen, Miley Cyrus, Gwyneth Paltrow, etc.

JanetLovesJason Thu 08-Nov-18 18:22:52

I’ve only been doing this five years, and god, what a change there has been in those five years.

I remember the first time we went to buy gf bread in a supermarket. Standing in front of the tiny section really bewildered and confused.

A fellow customer spotted my confusion and took me under her wing. Explained what was worth bothering with and what wasn’t. It was such a kind thing to do at such a hard time.

The thing I still really struggle with is missing foods that remind me of people who’ve gone now. So things you have at Xmas or family occasions that remind you of a loved one. It’s like being cut off from your history.

But have discovered Schar now do a gf Ferraro rocher type chocolate. They were never my favourite, but my mum loved them. Absolutely loved the. Since she died I have craved and craved them.

bananasaremyfriends Thu 08-Nov-18 18:26:52

There is no way I can eat food prepared by someone else, not even from a gf kitchen. The likelihood of it being gf enough is very low. The small amount of under 5ppm food I can tolerate without a dh outbreak is pitiful.

I dont think a sleb on a fad diet does much to promote zero gluten food. Sadly.

Some days I cant face enough bowl of veg, butter and egg.

I have found a tea I can drink, so that helps!

Yellowbutterfly1 Wed 14-Nov-18 16:04:19

My mum is also a coeliac and feels the same as you. She is so fed up of going out for coffee and cake with a friend and all they have to offer is a chocolate brownie. She doesn't even like chocolate.
Why can't places make more ordinary cakes without gluten as standard? I just substitute normal flour for gluten free and it comes out the same.
The faders do wind me up a lot. My inlaws are gluten free faders, in public they make a big song and dance about needing gluten free food but behind closed doors they happily eat gluten with no problems at all. Attention seeks are what they are

MrsDLPB Fri 07-Dec-18 22:50:27

Oh my goodness didthatreallyhappen2 and everyone here - thank you so much for that rant. Just been diagnosed with Coeliacs this morning and had a crap day imagining what it was going to be like and that no one would understand or be able to complain as I am grateful it’s not anything worse. But thank you for your rant! It’s made me feel much better, weirdly, to know others are going through the same thing. I’m not off gluten yet as I’m just about to have the biopsy to confirm but the GP said all other tests and symptoms suggest Coeliacs and I have it in the family. 🤦‍♀️ Oh well - onwards and upwards - I do have a great GF choc cake recipe I’ll have to dig out! Thanks again x 🤝

TalbotAMan Fri 07-Dec-18 23:05:48

6 months in and what is starting to irritate me is restaurants that merge their GF offerings with their Vegetarian/Vegan one, presumably thinking that its a fad. I'm quite happy eating meat; I'm GF because I have to be.

The cafe at work started offering Christmas dinners this week. The conventional, turkey based one isn't GF. The alternative, GF and Vegan, is based on roast beetroot, the very thought of which makes me want to vomit.

Didthatreallyhappen2 Sun 09-Dec-18 18:05:40

Welcome to the club MrsDLPB!

One thing I have found since the summer is that it's not as bad as it seems at first. I even went out for Christmas dinner last week and, apart from the pigs in blankets, I had everything that everyone else did (albeit prepared in a "safe" area in the kitchen - I keep imagining chefs with helmets, overalls and green wellies preparing my food). At home I have discovered substitute foods, ie pasta, biscuits etc, that are very similar to what I ate before, so my diet hasn't changed that much, although I have lost weight as I don't snack any more (mainly because a small pack of biscuits is £1.77!). There have been some successes (even getting some restaurants to create their own GF menus), and some disasters (macaroni cheese from a well-known supermarket that was indescribably awful).

There are a lot of us about, and if you want a rant or moan, feel free. Hugs! (And try the brownie recipe on the back of the Freee Plain flour packet - it's absolutely delicious).

OP’s posts: |
MilkyCuppa Sun 09-Dec-18 18:11:16

@TalbotAMan that annoys me too. They try to produce one “special” meal that caters for everyone. I’m not vegetarian and don’t want to be. And dairy free is disgusting - why would you eat that if you don’t need to! Quite often I reject GF options because they’re also DF. From the other perspective I expect DF people are equally annoyed by their food also being GF - it isn’t very nice and why would you eat it if you don’t need to!

LizzieBennettDarcy Sun 09-Dec-18 18:20:23

My grandchildren have coeliac disease and it makes me rage that people think it is a dietary choice. DD took one of them out for a birthday lunch last year and the "chef" cooked the gluten free food in the same fryer as the rest of the food as he was so fucking thick ignorant. My granddaughter spent the afternoon and evening being violently sick as a result, and the day was ruined.

People with their stupid fad diets have a lot to answer for, OP.

Summerisdone Sun 09-Dec-18 18:49:44

I'm always surprised that some places have so little available in terms of gluten free. I'm a chef, only for a pub restaurant so nothing too fancy, yet we have gluten free options over half our gluten containing meals, so I'd say a coeliac could eat probably around 70-80% of our menu, just some made with alternative ingredients obviously.
The same with our desert menu too, any deserts we buy in are gluten free and quite a few of the ones we make ourselves are also gluten free or have alternative options.
I'm sure if you look around more places, you'll find some eateries do offer much more gluten free options, although I know it's not really very fair that you have to actively seek out the few places that you can eat in, but just thought I'd let you know that there are some places out there.

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