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Going gluten-free: am I insane?

(16 Posts)
Alwaysworthchecking Mon 19-Sep-11 21:45:08

OK, so I have Lupus SLE and what appears to be an ever-increasing list of allergies. At the moment I have either a delayed-allergy or intolerance to milk, soya and lentils (eat them and I get gas, cramps and a sudden need to dash to the loo) and what my GP tells me is 'oral allergy syndrome' to nuts, chocolate (yes - feel my pain!) and some raw fruits. I know there are other things that kind of set me off (itchy skin around my mouth, 'scratchy' tongue and the sensation of swollen lips and tongue - but they remain looking perfectly normal) but I've yet to work out what they are.

There is a high incidence of coeliac and gluten intolerance in my family (some have one, some the other) and having read about gluten intolerance/coeliac and it's role in inflammation and lactose intolerance, I thoug I'd try cutting it out of my diet for 6 weeks and see if it made a difference.

Thing is, I'm two weeks into my self-imposed trial and am finding that there's not a lot left I can eat! I know - I should have seen that coming really. In your opinion, should I just quit while I'm ahead and go back to eating gluten? Is it really worth it? Almost all the gluten-free stuff is bulked out with either soya, milk or nuts, or it's got chocolate in it. I make an awful lot of stuff from scratch, but I'm also working and lupus-knackered - sometimes I just want to eat something from a packet!

I know I should work this one out for myself but, frankly, I'm so darned hungry that I've lost the power of rational thought.

Thumbwitch Tue 20-Sep-11 14:04:42

God no. Stay off it if you can.
GF pasta is good for rapid food - Orgran have a decent range (I like the millet and rice on best, although the vegetable rice one is good - I don't tolerate high levels of corn that well so steer clear of that).

Dove's Farm flours will have something you can use - and Mrs Crimble's cakes are nearly GF (he has coeliac disease himself, I've met him, yes it is a him). Both of these websites also provide recipes for cooking GF.

So in reality you should be able to get some stuff from the Free From sections of the various supermarkets - everything I've mentioned I used to be able to get in Tesco/Waitrose (although the rice&millet pasta seems to have been replaced mostly by corn varieties now)

If your biggest problem is lack of bread (and it often is people's stumbling block) then make your own with the GF flours from Dove's Farm using the recipes they provide.

As a point of interest, oats are often ok for coeliac sufferers to eat (except the most extremely sensitive sufferers) as the gluten involved is structurally different from the gluten in wheat, barley and rye (all of which are very similar).

Lentils are horrendous for poorly guts - the substances that are in lentils (and jerusalem artichokes, just so you know) are primarily used by the gut bacteria, leading to lots of noxious farting, bloating, and gut pain. Best avoided if possible!

You've already discovered the connection between coeliac and lactose intolerance; chances are if your gut heals, then you may be able to reintroduce some dairy (if it's lactose intolerance and not cows' milk protein allergy) but you'd need to start with yoghurt and cheese, that have very little lactose in them.

As you have also no doubt discovered, coeliac is also an autoimmune condition. So you may have two - SLE and coeliac (family history is a good pointer, although not absolute of course). Your immune system needs to calm down - best way to do that is to stop antagonising it grin.

I'm sorry you're so hungry - are you also a vegetarian?

For other triggers, try looking at this page about nightshade foods - some people are sensitive to them and they have been implicated in inflammatory conditions. It will of course add more potential triggers to your list but you just have to get more creative in what other foods you can try.

Rice is usually your friend; if you are not sensitive to nightshades, then potatoes can be as well but they are a definite no if nightshade sensitivity is an issue (ditto tomatoes, sorry). So, you could try boiling up a panful of rice at the beginning of the week and then chilling it fast in portions to be eaten through the week (freeze as necessary) if time is a factor.
Avoid chickpeas as well - it's quite a high-ranking allergen these days!

If you want more specific help, let me know what you generally do eat and I'll try to help you out. If you are veggie, it might make life a bit more boring in terms of your options but it can all be worked around.


becstarsky Tue 20-Sep-11 14:19:11

I'm coeliac, luckily for me I don't have any other food allergies. I did used to be lactose intolerant before I gave up gluten.

I do occasionally buy 'free from' manufactured stuff, when I have a craving for 'forbidden food' but it does tend to be highly processed - even more so than its gluten-containing equivalents. I find the best way is to stick to meals that are naturally gluten free - meat, fish, and lots vegetables or salad with either rice, potatoes, or quinoa. I bake a lot of cakes at home - flapjacks made with gluten free oats, banana cake is always good because the bananas stop it being dry (some gluten free stuff can end up with a 'mouthful of dust' texture). I bake bread with Doves Farm flour, and sometimes I make cornbread to go with chilli, or spicy flat breads made with chick pea flour.

Someone on Mumsnet pointed me to this website which is full of fantastic gluten free recipes - highly recommended!

Our family menu plan for dinners this week is:
Roast chicken dinner with potatoes, carrots, broccoli and gravy (use cornflour)
Roast chicken leftovers with salad
Chicken soup made with stock and root vegetables
Chilli con carne with rice
Chick pea curry and rice
Gluten free sausage, chips and beans

My lunch is often jacket potato with various fillings - just because I work from home and it's easy. In summer I usually have salad. It is hard in the beginning to adjust, but honestly once you get accustomed to it, it becomes instinctive to know what you can have and you can eat very well.

Good luck - hope you feel better. No chocolate - now that would be a serious challenge for me...

Alwaysworthchecking Tue 20-Sep-11 21:56:28

Thanks! OK, I'll plough on with it for a while longer. The idea that I may be able to eat cheese again has galvanised me. (Man, I miss cheese!) Luckily (in an odd way) ds used to be gluten-intolerant, so I am familiar with the marvels that are Waitrose Cambridge GF sausages and Dove's Farm GF self-raising flour. Made a very good Dutch apple cake last week and courgette cake the week before. Have some manky-looking bananas so will try that next. We tend to eat a lot of the kids of meals you describe, becstarsky, so that's good too. Not veggies, as that would just be a complication too far. (No offence to any veggies!)

Please can I have your cornbread recipe, Becstarsky? Thanks for reminding me about Piginthekitchen. I once made some yummy beetroot cake from there. (Bit of a vegetable theme going on with my baking!)

The choc allergy is indeed a trial to me! I must scour the health food shops for some carob. I've a feeling it tastes like dog treats but you never know.

Gosh I hope I don't have to give up nightshade foods as well. I would miss my spuds!

Tewkespeggy Tue 20-Sep-11 22:44:58

watch out for the cheese OP. of its pre- grated its probably not gluten free. if it comes in blocks, it probably is.

Always read the lable ( i know it sounds lame)

pinkytheshrinky Tue 20-Sep-11 22:51:30

Most grated cheese is now coated in potato flour. And is it not worth having a test for coeliac before embarking on a gf diet. You could well be intolerant and not have coeliacs disease? it is worth knowing becuase being intolerant to something is a world away form having coeliacs.

tkband3 Tue 20-Sep-11 22:51:54

My 3 DDs are all coeliac - we discovered a while ago that the majority of M&S sausages are g-f and are really lovely. Waitrose also have a new range in stock which is g-f. Sainsburys and Tesco stock the Black Farmer range which is also good. I don't bake bread - we get a lot of stuff on prescription (bread, pizza bases and pasta), but I don't know if it contains soya or anything else you're allergic to.

I bake a lot - I find most recipes respond well to simply replacing normal flour with Doves g-f range.

For thickening casseroles, making white sauces etc I use rice flour - it works brilliantly without going lumpy!

Good luck - sainsburys do some free-from chocolate - would that be any good for you? (horrified at the thought of having to eliminate chocolate from my diet smile)

pinkytheshrinky Tue 20-Sep-11 22:54:54

Without a diagnosis the OP would not be able to get stuff on prescription though and it is VV expensive isn't it? Blows my mind how much they charge for simple things (which are easy to make)

notapizzaeater Tue 20-Sep-11 22:58:03

We have GF yorkshires a couple of times a week - DS likes them cold with jam.

90g cornflour, 4 eggs, milk as normal. Whisk - cook as normal - rise wonderfully and taste "normal" freeze OK for mid week fill ups.

I cook big pans of stewing steak and onions and freeze in portions then serve with YP's

Thumbwitch Tue 20-Sep-11 23:01:04

Carob is usually easily found in Holland & Barrett. It's ok, but not as good as the real deal. Are you having to give it up because of the soy lecithin or is it the chocolate itself that is the problem?

And yes, you will have to really read labels. smile

I agree with pinky tbh - you could have the coeliac test and it still come back negative yet you could still be intolerant to wheat/gluten - so trial is the better option unless you want to get your GF products on prescription. HOwever, if you do opt to be tested for coeliac, you'd better stop the GF stuff now because they make you go back on it for 6w before they do the test anyway (so they can see the gut damage).

If potatoes are your biggest block to trying a nightshade-free diet (and you don't at all have to do it, it's just an idea to help you look for your other triggers) then you could switch to sweet potato instead - that's not a nightshade. Makes good mash and reasonable roasties (doesn't need cooking as long as real potato).

Alwaysworthchecking Wed 21-Sep-11 15:16:42

Thanks - will go to H&B. I think it's the actual chocolate. I've been eating Lindt 70% for a while, to get round the other allergies but now I really react to that and to free-from chocolate, chocolate cake and Bourbons. The other day I made the dc hot chocolate from oatly, cocoa powder and sugar. Dipped my finger in to test temp. (I washed it first!) and then licked my finger. Not good!

Luckily I am used to reading labels - mum is gluten-free, dd has been milk-free since 18 months, soya-free since 3 and ds is milk and soya-free plus used to be gluten-free. I often find myself reading labels by accident - you know - someone hands me something to hold and I'm reading the label before I've even thought about what I'm doing. Plus a couple of the dc's friends can't eat anything with gelatine in, so I'm used to scanning labels for them too.

I've been testd for coeliac once and it came back negative. Now if I ask I just get short shrift. If the trial makes any difference I'll go back on it and ask again. Three weeks into it now and the only discernible difference is that my joints feel worse and I'm losing weight. I'm giving it 6 weeks.

RubyRooRoo Wed 21-Sep-11 23:25:47

I feel your pain. I went through something similar and believe me, it gets much easier. Some great advice here, so stick with it - soon it will become the new norm. Stake out the health food shops and you'll be amazed at what foods (some of them out of a packet!) are there that you never knew existed. I mean, who ever heard of seaweed sprinkles, but they give me one of my five a day - out of a packet!

The great thing is, allergies can go as well as come - mine did after years! Read 'Evolve Your Brain' by Dr Joe Dispenza - it really helped me. Good luck.

CheerfulYank Wed 21-Sep-11 23:56:52

It's tough. But eventually you don't think about it anymore; I've been gluten free for seven years and it just is what it is at this point. smile

Alwaysworthchecking Mon 26-Sep-11 14:45:07

Thanks, everyone. My rheumaologist decided this morning that I should have a coeliac test, so I'm back on the wheat for the moment anyway. Only been off it for three weeks.

freefrommum Mon 26-Sep-11 20:14:59

Sadly the blood test for coeliac disease can give false negatives (but hardly ever false positives). The only real way to know for sure is a biopsy and given your family history, I would push for the biopsy. You will need to be eating gluten for at least 6 weeks beforehand though otherwise it won't be accurate. I would also demand ask for a referral to a dietician for some help with your restricted diet. Good luck!

Alwaysworthchecking Mon 26-Sep-11 21:20:39

Thanks freefrommum. Your name alone tells me that you know what you're doing! I'll demand ask about the biospy. The dietician is good idea.

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