Gluten free diet - is it really that bad?

[cauliflowercheese14]

Hoping for some positivity here. I'm likely to be advised to go on a gluten free diet for the rest of my life. I've been upset, then done some research and just had a browse round Asda. I have a generally healthy diet, I cook from scratch most of the time and don't have a sweet tooth. Am I being madly optimistic to think that this is not going to be too bad? An average day would seem to only involve me replacing the odd slice of toast, crackers or pasta. I see I can buy gf pitta, naan and garlic bread all of which I probably have once a week or so.
Additionally we're a family of four and would it be unreasonable of me to cook gf for everyone? I suspect the kids may have some mild issues anyway.
Any experiences / advice gratefully received!

Awful that you've suffered all that time OP. And yes Eczema or psoriasis is the usual diagnosis I think.

Started with this weird horrible itching on both knees and elbows last year. Burning and stinging and like you I itched the tops of the tiny blisters. I googled and straight away found DH. Didn't know anything about CD and dismissed it that my rash could be that as I didn't have the digestive symptoms or so I thought. Been living with IBS for the past 15 years but now I'm not sure it was IBS after all.

Anyway I decided to go GF just to see if it helped the rash. Within 4 days the burning and itching had gone and the scabs started to heal. Within 3 weeks I just had purple scars.

But then I did a stupid thing and decided that I would try some gluten just to see if I really was intolerant as I was so fed up of not eating my normal food.

Huge mistake. The DH came back with a vengeance and now all over my ankles and feet. The Dermotologist after saying it wasn't DH now agrees that it looks like it is. He's prescribed Dermovate and if that doesn't work he said I will need to go on Dapsone.

So I'm going to be very strict with the GF and hope and pray that things improve.

Stay on the gluten before you have any tests as you need it in your system to get a positive result.

Someone told be about Coconut oil and that it is supposed to be good for skin problems, although I've not tried it yet.

I'm in a FB group for DH which is really helpful.

Oh yeah and my mum has Coeliac Disease too which presented with DH as well as the digestive symptoms and the diet really sorted out her skin wonderfully, she has no issues at all now. And she makes the best sponge cakes ever - gluten free actually works better for sponge cake than normal flour.

Two of us are glutenfree. Once you get into the swing of it it is surprisingly easy. I cook gf for everyone. We have separate toasters and I am careful about cross-contamination - if doing lunches for everyone I would do the gf first, then the others, for example.

You'll find lots of help here (no need to join or sign up to anything):

coeliac.proboards.com/

which has archived lots of information and tested recipes for gf (and some for gf vegetarian or with other allergies, etc.).

The "live" board is at

members2.boardhost.com/glutenfree/

Re lactose intolerance - lots of coeliacs/gluten intolerant people find that once they have been glutenfree for a while the gut recovers and they can tolerate lactose again. However, even if you aren't one of the lucky ones it's easy to replace lactose containing stuff - DS is coeliac, allergic to gluten (epi pen) and milk, and intolerant to egg but I still worked out how to make great chocolate cakes! It's amazing what you can do when you get used to it!

Farrow - I was diagnosed after being tested for coeliac but coming up negative. I then had a series of other allergy tests for wheat etc.

I was extremely ill and almost bed bound. Out of desperation I went on a gluten free diet and immediately became much much better.

I went eventually to see a world expert in non coeliac gluten intolerance and he diagnosed me by exclusion of all other possible factors.

He has some very harrowing stories of people like me who have suffered for years undiagnosed. My case was written up in the British Medical Journal.

People with non coeliac gluten intolerance suffer undiagnosed for years because it is atypical and not all doctors accept or know it as a condition.

My lactose intolerance is easy to diagnose. The lactose is broken down to CO2 in my gut. I get extreme pain and wind and feel sick with diarrhea. The dignosis is to exclude lactose and if the symptoms disappear then lactose intolerance is confirmed by reintroducing milk. My symptoms return in 2 hours.

Unfortunately long term illness has left me with fibromyalgia and I am in constant pain. Some people with undiagnosed non coeliac gluten intolerance look as if they had a stroke.

My friend's daughter was diagnosed a while back and she said the first year was very hard when you are working everything out but now it is second nature. It is hard for eating out though - takes out all the spontaneity if you have to find a gluten-free restaurant (and she found that just ordering gluten-free choices didn't really work because of cross contamination).

Farrow - your nutritionist is sending you to allergy tests to exclude allergy to wheat, dairy (not lactose), soya, etc.

It important to exclude other possible causes.

As others said, everyone being tested for gluten intolerance as potential coeliacs MUST keep eating gluten otherwise the test won't work.

I'm sorry to read that you're in constant pain Beta that's awful for you. Is that because of the gluten intolerance that you had all the years before diagnosis?

I've been diagnosed with fibro too. Joint pain, constant fatigue, head fog, muscle ache. I feel like an old woman when I'm still in my forties. But now I'm wondering if these symptoms are actually CD?

Farrow - yes basically I think it was caused by my long period of illness undiagnosed.

No one knows what really cause fibro but long term illness is thought to be one possible cause. Interestingly gluten intolerance can cause the immune system to attack nerves, joints and blood vessels which I think leads to my symptoms. Sometimes I cant feel my hands at all but sometimes my finger joints hurt. Like you I am tired a lot, fibro fog and all the rest.

Interesting you have fibro and CD too. I have read it is often linked. Like you, I also feel very old some days.

Still, mustn't grumble. I am going for hot water physiotherapy tomorrow. I take 30 mg of Amitriptyline at night which helps me sleep and is a mild pain killer as a side effect. I hurt most when I do physical exercise but it helps if I do and the hot water takes away the pain while I exercise.

stillstanding
It used to be relatively easy to get gf Worcestershire sauce - then it suddenly disappeared off all the shelves. I don't know why, but suspect it was to do with the change in labelling regulations, meaning that the ppm level was too high for it officially to be described as gluten free. But, I shopped in Morrisons for the first time the other day, and found a brand called 'Chippa' (www.Ilovechippa.com).

OP - as has already been said, you're right, eating gluten free is pretty straightforward if you tend to avoid processed food anyway - at home, at least. Eating out used to be much harder, but my son was diagnosed just before he turned four - he's 11 now, and it's become exponentially easier to feed him an interesting and enjoyable diet beyond our home over the years. The difficult part is always cross-contamination.

At the weekend, though, for the first time, I sent him off to a party without calling the caterers first, double checking what he could/couldn't have, cross-examining their food preparation rules, and giving him strict instructions regarding menu choices (or a packed lunch). I told him, truthfully, that now - by law - every server should know what was safe for him; and left him to have that conversation for himself. It was a major High Street chain; I was confident of corporate protocols. He was fine.

Oh, and Asda has the best own brand gluten-free range of all the supermarkets, with the possible exception of Morrisons (l have limited experience). Ocado sells Isobel's mixes, which are best for pizza bases and Yorkshire puddings... but they also have a lot of overpriced, unnecessary stuff they're keen to flog.

multivac* - like you I have had many conversations with caterers and restaurateurs.

Mostly they are very good and know exactly what to do. Often, I find I just need to reassure them as they tend to panic.

I can recommend bisto best and some finest / taste the difference sausages are now gluten free.
I think the bread is nasty, but like the crackers. However, my sister (the gf person) says they are getting much better. Quinoa and polenta make a nice change from rice.

Last year we went abroad with her and printed out in Greek a list of gluten ingredients and explanation. This was brilliant and I think was from coeliac society website.

Farrow, I'm in my early forties and assumed that my fatigue, irritability etc is due to having 2 young kids and working ft, running the home etc. I'd be delighted if it was down to this and could be treated.

I'm not too bothered about whether I test positive or not. The blood tests were done before I gave up gluten but I can't bring myself to go back on it now. I'd feel like I was poisoning myself.

Excellent recommendations cotton and potap, I'm noting all these down. So helpful of you!

I'm gluten and lactose intolerant. My GPs dx it by exclusion. I was shell shocked to start with but it's fine. I got some help from
NHS dietician but really you have to work out what works for you.
I cook every thing from scratch but do use bought sliced bread for toast.
We all eat the same at home apart from pasta and breakfast.
Going out is mostly fine. Occasionally staff are arsey as they clearly 'don't believe' but they are the ignorant few.
You need to be careful about chips. I have discovered I can eat chips cooked in the same fat as wheat coated stuff as intolerance does not always mean complete exclusion. With coeliac disease you obviously need to take far greater care - for me the consequence is within twenty minutes and unpleasant-to-gut wrenchingly vile but with coeliac you don't know you are causing damage.
You also need to be careful with grilled/pan fried fish as sometimes they coat the fish with a fine dusting of flour to hold it together better.
Good luck. You'll be fine. But don't eat the processed shit, however nice those mini millionaires shortbreads are, or how glorious the honeybuns pistachio cookie is ...

Interesting what you say about the irritability op. You may find that improves going gf. My husband is a nightmare if he has something contaminated! Also, as the last poster says, be careful with chips when you're out. You need to ask whether it's been cooked in oil used for other things. Most places will know. If you want oven chips, usually the cheapest ones don't have any extra coatings. If you have access to Costco, their 'Stealth fries' are the best (and cheapest) gf chips we've found.

OP you may find the up side of this is that you eat more healthily and stay slim! As I said earlier, I first experimented with gluten and dairy free (under a top prof of immunology) in the 1980s. I didn't see a huge difference in my symptoms but some years later tried again after being pretty sure that my bowels were being affected by gluten (not so much dairy.)

As far as I know, blood tests are not that accurate for intolerance. His approach was stone age/ elimination diet then challenge (as Beta Dad has said.)

So...when I first tried gluten/dairy free it was very hard- nothing available.
Consequently, I pretty much gave up all cake, biscuits, puddings ( and chocolate as it contains caffeine which doesn't help me) and stayed very slim. I've lost much of my sweet tooth. yes you can buy commercial products - cakes etc- but it's just as easy to make your own using Doves flour. I find that adding ground almonds and a touch of Xanthan gum as part of the flour quantity gives a moister and denser cake.

As others have said, avoid chips or 'fries' unless you know what they are because so many have a batter coating.

It really depends on how sensitive you are to gluten. I can eat a piece of 'normal' cake with no ill effects but if I was to do it every day, or eat bowls of pasta or loads of bread, I am sure my symptoms would gradually return.

TBH if you are going to put young children onto the same gluten free diet, I'd check with a dietitian (this is standard medical advice.) Wheat contains a lot of B vitamins and children can suffer if these aren't made up in the diet. Have a look at www.wisediet.co.uk for a dietitian who deals in allergies, intolerances and IBS.

OP This page confirms what I said about blood tests for intolerances rather than true allergy.
www.wisediet.co.uk/www.wisediet.co.uk/Allergy_Testing.html

I've been gluten free for 18 years now, and it is much easier now than it was. However, I'm not going to lie and say its easy, because its not. At home, it is fine but I think it can still be a drag as you always have to think about it. And its not so much the everyday food, but not being able to just get someone to pick up a birthday cake as you don't want to make one yourself. No lovely croissants on christmas day, not being able to do naice bread and soup as a supper and so on.
And eating outside the house is massively impacted, especially in situations like weddings, parties, conferences and meetings.

But as someone who has CD and DH, its worth it. Even the times when I cope for the day on a packet of crisps!

CMOT - "And eating outside the house is massively impacted, especially in situations like weddings, parties, conferences and meetings."

I just went to the US for a 1 day conference. Over the 2 days I was away I ate a LOT of fruit and fish because there was nothing there to eat at all without wheat. Mass catering really relies on wheat based products because they are cheap.

My wife said my face I looked thin when I got back. Not eating starch is definitely a way to lose weight.

I've been to some conferences where there wasn't even fruit! One particularly memorable one in Miami, we had to get the bus before the hotel breakfast started, and there was nothing but bagels and muffins at the convention centre - not even a Starbucks. I was not a very happy camper.

Meals where the starter and dessert is the same melon are also joyous

Yes going GF can help you lose weight mainly at first because you're so scare to eat anything!