Gluten free diet. Has anyone tried it?: Hello! I... - LUPUS UK

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Gluten free diet. Has anyone tried it?

Babymilo profile image
17 Replies

Hello! I want to know if anyone has tried this and how is the result? Even though you have or don't have celiac disease.

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Babymilo profile image
Babymilo
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17 Replies
Lenocker68 profile image
Lenocker68

My niece had to eat this kind of a diet, she has nothing tasty to say about it. In her option it's boring and depressing day after day. However I know it's essential for certain conditions. I never felt it gave her enough nutrients, it's hard to see where they come from. Good like that here in the USA are mostly so processed you don't know what your eating. Hope your country is different.

Treetop33 profile image
Treetop33 in reply to Lenocker68

It is for now, because our food standards are governed by EU regs. When we leave it's widely understood that there will be a food security issue, particularly if this govn. goes for a trade deal with the US. So we'll end up with what you've got.

Doesn't the US have really good wholefoods stores, or are they too expensive and not available everywhere?

Lenocker68 profile image
Lenocker68 in reply to Treetop33

Oh of course they are everywhere, it's just what the government decides to share with other countries due to cost and the new laws since trump took office.

Babymilo profile image
Babymilo in reply to Lenocker68

Has ur niece experienced the result? I saw on internet nowadays gluten free is getting better because there is a lot of gluten free products that I think it is good to try. I'm not in us but I think in your country the gluten free products are better than in my country.

puffyface profile image
puffyface

I went gluten free simply because I have autoimmune disease and I read that it helps to reduce the antibodies?? I don't know whether it helps or not...but anythings worth a try. I've been trying to follow it for about 2 years now...and it certainly makes me more aware of what I'm eating and more healthy. I've had a few slip ups ...bacon sandwiches...twice...and the odd nibble of marmite. On the whole I'm glad to have done it. Good luck!

Babymilo profile image
Babymilo in reply to puffyface

Have u experienced anything different with that diet? I tried for a week, then off. Then start again. Some kind like that. It is hard to be discipline. The only result I get is I got better skin. My skin was dry and if I eat healthy my skin gets better. I dont know if it is gluten that makes my skin dry or because I eat a vegetables when I do eat healthy.

puffyface profile image
puffyface in reply to Babymilo

Honestly I don't think I have noticed much difference, apart from losing quite a lot of weight (and I do crave and eat chocolate and some sugar now).

Actually, I don't eat the 'gluten free' products, because it's made me think about avoiding all processed food as much as possible. I would never eat pasta/cakes/biscuits before much anyway.

I do massively miss bread and don't like the gluten free options. Whether it has helped or not I'm not sure, but really don't want to take the risk of going back to it. Why don't you try it for a month and see if it makes a difference? If you decide to reintroduce it into your diet, be careful to do it a little at a time.

Best wishes.

Treetop33 profile image
Treetop33

My family is gluten intolerant and I've come off it since being diagnosed with Lupus (I'd pretty much switched anyway because it would be mean and disheartening to eat wheat in front of them). Gluten free products have got very good in recent years. The best ranges are by Coop and Sainsbury's, in my opinion. It takes some adjustment in cooking too - all cakes have to be made more runny than wheat ones, for example. But it is one of the easiest adjustments to make and can be well worth it too.

Babymilo profile image
Babymilo in reply to Treetop33

In my country gluten free products isnt very popular so I have trouble looking for them. Also the price is expensive. But if the result is good I think its better to do it.

blackjak profile image
blackjak

I have been gluten free for about five years now. I have lupus and for a while had anaphylaxis after eating things like bread or pastry. I was in A & E three days in a row. I now have an epi pen and am pretty well OK as long as I avoid things with wheat in them. This means no grabbing a hasty sandwich or pastry when out shopping! I was caught out on holiday last week, I can tolerate battered fish occasionally but this time the batter got the better of me! Luckily just my eyes swelled and bottom lip went big. I am lucky as I don't crave cakes and pastries just a good home made pie with puff pastry, although there are gluten free pastry options they aren't the same.

Tinksie profile image
Tinksie

Hi. I went gluten free 8 months ago and it has made a big difference to me. My IBS had been getting worse and the bloating, stomach cramps and constipation were really affecting my life. I was tested for coeliacs but came back negative but tried gluten free under advice from GP. I was very cynical but did a lot of research and found many articles suggesting links between gluten intolerance and autoimmunine diseases. Everyone is of course different but I now no longer have to take laxatives (I was taking them everyday) and my stomach is flat whereas it was often so bloated I looked pregnant. The stomach cramps are also gone. The doctor suggested once my body had had a break from gluten I might be able to reintroduce it as long as I don't overdo it. However whenever I have gluten now my stomach reacts violently as if to say 'don't you dare'. Yes I do miss fresh bread (gluten free bread is not great!) and I'll really miss croissant when I go to France this week but it is so worth it! When you realise it's causing you pain you actually don't miss it as much as you think you will. I don't find it difficult cooking now either. Cornflour for all sauces and gravies. I make great cakes with a mixture of gluten free flours, and pancakes and toad in the hole (sorry, favourite weirdly named British dish!). Gluten free pasta is great too. Well worth trying if you have IBS issues in my opinion. Xx

Jacquie3242 profile image
Jacquie3242

It has helped me a lot with bloating, gut pain and generally feeling unwell, but it is difficult to follow, especially for me as I can't tolerate any form of complex carbohydrate (so no grains of any sort and not beans and lentils). I have lost quite a lot of weight despite eating chocolate and drinking full fat coke. I really crave fresh bread. I need to have something sugary around as no complex carbohydrates means you don't have any food that keeps you going between meals.

Treetop33 profile image
Treetop33 in reply to Jacquie3242

Protein keeps you going - can you tolerate yogurt and meat items?

Jacquie3242 profile image
Jacquie3242 in reply to Treetop33

Yes, can eat meat, fish and milk products, but it doesn't last as long as complex carbs so I have to have a snack between meals. I soon know when I haven't eaten for too long.

Treetop33 profile image
Treetop33 in reply to Jacquie3242

I know what you mean. I get the hungers all the time. It got a little better when I went low carb, but then the pred ramped it up again. I was told that more protein was the best way to replace carb pangs, anyway. It sorta works.

yakamalayo profile image
yakamalayo

When my daughter was diagnosed with Lupus 3 years ago (age 17) we did loads of research and she decided to cut out gluten as there are many studies which suggest links between gluten and autoimmune issues (she had no previous signs of intolerances). That was closely followed by cutting out dairy and refined sugar for the same reason (lots of anti-inflammatory books highlight gluten, dairy and refined sugar as the 3 primary food triggers of inflammation, in that order I think, although everyone is different). Her health has improved ENORMOUSLY which she largely puts down to her lifestyle choices, including her diet, exercise, yoga, learning to manage stress levels (huge trigger for her), etc. The last tests showed her bloods had come down to NORMAL!!! which the lovely lupus specialist in Birmingham, Professor Gordon, said she had never encountered before! So REALLY worth trying. Luckily she likes cooking so she makes loads of delicious food, which is not hard when cooking from scratch (veg, fish, spuds, other grains, lentils, beans, herbs, spices, etc.) but would be much harder if you're used to fast foods and instant meals. Luckily she didn't eat those anyway so the switch wasn't so hard and the benefits have been really worth it.

About a year ago she decided to go vegan as well (for ethical reasons), so fish/meat/eggs etc. now also gone. She still finds being gluten free and vegan easy when she's cooking (she's at uni in self-catering accom) but eating out obviously harder. Actually, not too hard in the UK now - loads of vegan/gluten free places in cities - but travelling is a challenge. Went to western Ireland (Cork area) a couple of years ago and that was brilliant. Lots of places getting better now.

Although most gluten free bread is pretty bad, she has found a brilliant one which is also vegan and widely available in Europe (including UK). The brand is Schar and they do loads of different varieties including loaves, ciabatta rolls, wraps, etc. It's actually really good. I sometimes eat it even though I can eat normal bread. In the UK, large branches of Morrisons (mostly in the North) have the best range of Shar products, but Tesco, Co op, Sainsburys etc. also stock it. For people who like biscuits you're probably better making your own flapjacks etc., rather than trying mass-produced GF stuff - much nicer and healthier. She's found loads of great recipes for puddings/cakes, and that's with the added challenge of vegan as well as GF.

Incidentally, since becoming vegan as well as GF/Dairy free, her health has improved even further so most of the time she feels 100% back to pre-lupus health, apart from fairly short-lived flare-ups triggered by sunshine (occasional slip-ups on the factor 50) or stress.

So really worth trying diet/lifestyle changes. My mother-in-law is always trying to make her old favourite staple recipes with substitues so that my daughter can eat them, which doesn't really work that well, so one final tip - don't try making your old favourites with complicated substitutes, but experiment with new recipes which are GF/DF/V anyway. You can find loads online.

Babymilo profile image
Babymilo in reply to yakamalayo

Wow thanks for your positivity! I manage to do it but I cant be discipline because sometimes I want to eat gluten. Also in my country it is so hard to find all gluten free products. But, like you say this is worth a try. Yesterday I went to another doctor and he said about vit D defieciency could be the reason of my hairloss and dry skin.

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