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Gluten :-(

(10 Posts)
Nooneelse Sat 10-Feb-18 18:08:12

Hi, I'm struggling to come to terms with gluten intolerance. I know I sound daft as things could've been a lot worse given all the symptoms, but I feel like an absolute pain asking for 'special' food.

I am aware that if this was one of my friends of be extremely supportive and advise them there's no shame in it. I'm just really struggling. Did anyone else feel like this at the beginning?

Don't want to drop feed so... I have been referred to gastroenterologist, have had blood test for celiac come back negative, had colonoscopy with biopsies as bowel cancer in family and symptoms were indicative...all negative thankfully.
This may be what's compounding the feeling that I'm making too much of a mere allergy as I know the diagnosis could've been so much worse.

Any advice gratefully received, thank you :-)

YassQueen Sat 10-Feb-18 18:15:23

I felt like that at the start after being diagnosed with coeliac. It's totally normal, don't beat yourself up flowers

It gets easier. If you're nervous asking for "special" food in restaurants etc, don't stress - just ask if they have the allergen list/gluten free menu, most places do or can at least tell you what is gluten free.

Your allergy/intolerance is a perfectly valid reason in itself but there's no shame in saying you have coeliac in restaurants etc if that makes you feel more comfortable asking for gluten free foods, it should also ensure that they're as careful as can be about cross-contamination.

With friends/family etc, I always make sure I've got a little bag of gluten free pasta or something like that with me when we're going somewhere. That way, if they've remembered and managed to make something normally gluten-free, great. If not, I won't go hungry wink

It gets easier flowers

Nooneelse Sat 10-Feb-18 18:21:53

Thanks YassQueen, really appreciate the advice! Was accidentally glutoned on Thursday and I'm still struggling through the fog. I need to get used to being prepared, I like your idea of taking gluten free food just in case...makes perfect sense yet isn't something that I'd thought of blush


ForgivenessIsDivine Sun 11-Feb-18 08:34:16

Read read read.... about all those people who feel so much better without gluten. Especially those who have seen their symptoms vastly improve. I also find that avoiding dairy, yeast and many of the other odd ingredients in GF food makes me feel better and more able to cope with the odd accidental gluten consumption.

And find lovely places to go and eat where it is OK to have gluten free food.

There are hundreds of disappointing recipes and over priced substitutes... when you find things you do like... make your own recipe book.

My favourite breakfast:

My favourite bread (I avoid yeast)
200g of roasted butternut squash
200g of mixed seeds
100g of chestnut flour
50g raisins
1/4 teaspoon of bicarb of soda
Juice of half a lemon
1/2 teaspoon of caraway seeds.
Shape into an oblong loaf, cut lines across is and bake at 150 for 35 minutes (ish... sorry my recipes are approximate!)

Favourite deserts:
Brownies: 200g of roatsed sweet potato, 200g of date paste, 3 eggs, vanilla powder or freshey ground ginger, 1 tablespoon of coconut oil. Beat the sweet potato and date potato together then stir in the eggs and melted cooled oil. Bake at 180 for 30 minutes. . I use Brazil nuts in the base, much less lemon, and no syrup. Instead I use lavender and a small amount of honey.

It will get better and you will find delicious ways to eat gluten free and recover from the grief of the diagnosis.

ForgivenessIsDivine Sun 11-Feb-18 08:47:54

Bread recipe adapted from a Helmsley and Helmsley recipe and brownies adapted from a deliciously Ella recipe. .

WiltedDaffs Sun 11-Feb-18 21:51:15

My blood test came back negative too.

I went gluten free (after dairy free didn't work) and all my symptoms disappeared. After months of being symptom free I thought to myself "maybe a coincidence, should try some gluten and see what happens". It all came back again. Went to docs, got blood test forms and ate gluten for a miserable six weeks before testing and....negative.

Given my symptoms and that they went whilst gluten free, the doc said to go GF again and if I get better again I have my answer. Did that and symptoms went.

I now know about IgA deficiency which, since the coeliac test is looking at IgA levels, gives false negatives if you have it as well. I also know my coeliac screen result was so low they should have suspected this and given me further investigations. However it's been two years now and I really don't want to eat gluten again to have any other testing.

Totally normal to feel like you're being a pain at first and don't worry about asking for it when you've had negative results, there's plenty of us! I still feel a bit weird asking for GF food. I just remind myself that I'm not being fussy, I have genuine reasons for not eating it.

Nooneelse Mon 12-Feb-18 21:58:19

ForgivenessisDevine, thanks for the advice and the recipes. I have been looking into fresh cooking everything as it's safer that way so I will give those a bash! smile

That's just it WiltedDaffs, I really can't face having to eat gluten again to get truer test results. Since not eating it I realise how rough I actually felt all the time. The thought of an endoscopy doesn't fill me with delight either, but I'd come to terms with it as a necessary test but for the fact that I'd need to eat gluten for weeks and feel awful sad.

I did a good shop yesterday and batch cooked all my lunches for the week so I won't be glutoned this week grin

Thanks again for the tips and reassurance. flowers

CoeliacK Tue 13-Feb-18 16:50:05

If you haven't done so already sign up to Coeliac UK - you dont have to be diagnosed and they have loads of info on gluten free and also a barcode scanner to help shopping - also some great recipes too.

Hanlonx Tue 20-Feb-18 10:35:01

I was diagnosed with NCGI in Nov, I'm still struggling and still get bouts of feeling sorry for myself - it's normal! I HATED when folk would say to me "at least its not...." do you have to deal with this daily?! It's something that takes a great deal of time to get used to, but I promise it does get easier. On the plus side, it forces you to be healthy in most situations - can no longer reach for that cake in the office that's been handed in! (For fomo, I have a GF option in my drawer lol).

Coeliac UK is a website/app which you can download (yearly subscription £24), pop in your location and gives you a list of GF certified places to eat - GOD SEND.

You'll struggle the most with eating out, holidays and gatherings etc.

If you need any info or recommendations on food etc. just let me know! xx

Nooneelse Sat 24-Feb-18 18:56:17

Oh yes Hanlonx! I get "at least it's". I do realise it's not the end of the world, but as a food lover it's difficult to sit in a pub and decide what I want from a very limited list...which is basically any plain meat and veg or chip meal, with no tasty sides.

But I'm getting better; a successful shopping trip today means I found gluten free Yorkshire puds so I'll have a full roast tomorrow grin.

Thanks so much for the great advice. Feeling less alone now and a tad more positive smileflowers

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