Struggling.... Please help

So I'm gluten and lactose (and read I should avoid soya too)

Feeling a bit depressed about this now, and on top of this finding out that even the GF products aren't what they say..

I can manage at home, stews, plain chicken and rice etc.. But struggle  when out and about, I'm a big eater, never gain weight, don't think I'm absorbing fully yet, waiting on my third biopsy results ( I Couldn't face gagging on that camera ever again)

I feel like the last 28 months have been a waste of time as I was eating lots of the GF alternatives.

50 Replies

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  • Also I can feel bloated most of the time, is this because my gut isn't heeled yet or is this a permanent side effect of Celiac disease ?

  • Dear Ian

    Sorry to hear you are in a bad way. It does get better. You say that you are avoiding soya - is that a definite problem or are you just picking up some of the other health issues that people report with soya? Every body is different - I can't take gluten or dairy but have no issues with soya and have not grown horns or breasts yet, so can't be that bad!

    Rice milk is quite pleasant and is relatively safe.

    In terms of your ongoing bloating its hard to say what the cause could be - but may not be coeliac. Only thing I can suggest is to keep a food diary - listing out what you eat and drink and recording any symptoms in the following 24 hours. This way you should be able to pin point if a specific food or food group is causing you issues.

    Gluten can cause depression too if you are still accidently ingesting small quantities, but if this is a more general case of depression you should see you doctor.

    In terms of gluten free foods - I would say listen to your body. There are some people who are more sensitive than others and some who can't take codex wheat starch.

    You have to really make your own assessment - be aware of the potential for issues from gluten free foods (as not all are gluten free) and codex, but don't assume that just because someone else suffers it that you will.

    Generally I have few issues now as I know the hotels and restaurants that are more likely to poison me and those that are not and stick to plain foods Just ecause you can't eat gluten does not mean food has to be boring.

    If there is any specific advice you need, ask away, but in the meantime I would keep a food diary and monitor and tweak your diet from there.

  • Thanks...

    Yes I'm avoiding soya from what I've heard or read, yes I will keep a diary from tommorrow

  • Don't give up. I was also lactose intolerant, only diagnosed when I saw an US consultant based at Winchester Hospital. Once my villii had regrown I found that once again I could tolerate butter, milk cream etc although I could always use Soya. Have just returned from the US & had a delicious meal of ribs, with mash & cole slaw at TGI Fridays. I have also bought back excellent g/f cake mixes. Far superior to anything you can get here.

    Just don't give up, you will feel better if you stick rigidly to your diet but you must enjoy what you are eating & feel comfortable eating out & with friends & family. This is not a prison sentence but a healthy way of eating.

  • Thanks..

    Was TGI fri over here or in the US?

  • It was in the US but the menu over here shows g/f items. I don't know where you live but there is a fantastic Italian restaurant in Kingston on Thames where 3 of the family who own it are coeliacs so they do g/f pizza, pasta & risotto & even better still ALL the deserts are g/f!!

  • Hi Ian, well poor you and I am sorry that you are still struggling after over 2 years.

    As for eating out I would google gluten free in your area and see what turns up. I would try and find somewhere that sells baked potatoes as they are filling and easy to digest, just make sure that have a gf filling and are not cross contaminated.

    M&S sell sandwiches as do Strabucks I believe.

    You could also consider taking food with you like cooked rice, potatoes or gf pasta. You could also check out the supermarkets near you for their selection of ready prepared potato salads etc. Humous is gf and healthy.

    Health food shops are another good source of gf food when out and about.

    One of my favourite snacks from supermarkets is ready cooked popadoms the Sharwood ones are gf and much nicer than a bag of crisps.

    I would also check out foods that are gf but aimed at other cultures, vegetarians etc as there is a vast selction of naturally gf foods out there.

    This is one of my favourites it's nut luncheon made by Granovita:

    granovita.co.uk/product-cat...

    It doesn't taste of peanuts and is really healthy. Quinoa is another really healthy plant as it contains all the viatl amino acids that our bodies need to survive on and well worth considering introducing to your diet.

    I would have a chat with a dietician regarding keeping a food diary and consider going on a bland diet for a month or so to help your villi recover.

    And like the others said, don't give up and I hope that you start to feel better soon.

  • Thanks, I'll try that granovita, not sure if they sell it in the shops tho

    My dietician was rubbish, just told me the basics really

  • Thanks, yes I am back to basics, but I'm not really a good chef, I can roast a chicken, and cook a stew.. That's all really, is there anything I can use to spice up the chicken and rice , or something to juice it up, so dry and bland

  • Yes! If roasting, try salt and sage on the top, or put a lemon inside and rub with basil and oregano & salt. Or get some Cajun seasoning and some jerk seasoning (herb seasonings) and fry a chicken joint with some of it.

    Have you tried all the Lactofree & Alpro ranges too? It's the only way I get calcium in my diet and very good too.

    More cooking ideas for you on my wiki. icaneatthat.wikispaces.com/ and I highly recommend the Phil Vickery book, especially the cake section!

  • PS Watch spice mix - bought a Cajun one from H&B which listed safe ingredients on front but on the back had tiny "made in a ......handling gluten". Google gluten free cajun spice and there are a host of sites.

  • Last time I ate out I ordered the same thing as the previous wk,spoke to the chef, he said the chips were definitely GF.Next time ordered the manager who was acting waitress said no the chips are not GF... It put me off trusting anyone after that

  • My story is similar to yours and after being diagnosed CD, the bloating etc continued. Worked out little by little that I can't do gluten, dairy, corn, soya, potatoes. Also diagnosed with Chronic Candidose and had to cut out sugars and yeast.

    It gets to me occassionally but thanks to internet I found loads of recipes and still manage to enjoy food. However I can't do GF foods either and have to cook everything from fresh.

  • How do you cope if out and about. Or away for few days?

  • Thats the difficult bit as I sometimes have to travel for work so I either prepare a salad or a meal that can just be heated up or in a restaurant I order grilled meat or fish with steamed veg telling them I am very allergic to gluten and dairy. I find if i say allergic they are more careful than if i say intolerant. Intolerant is often interpreted as a food choice rather than not having a choice...unfortunately!

  • Hi Ian67,

    First of all let me say that I am sorry that you feel depressed about the situation that you find yourself in with regard to gluten and soya.

    I always try to look on the positive side of my predicament. If I take time and look around the world then strangely the areas of the world where the 'grains of the west' are not available are the areas where people are more healthy. This has often been a cause of interest to nutritionists throughout the world. The modern day chronic and fatal illnesses cannot be found in these areas. Never forget that big business pushes the grains that we have been brought up with from childhood and yet they do not appear to give any added health other than a staple to fill up the belly.

    Regarding soya: there are all kinds of health issues being thrown into the ring at the moment with this little bean. From disruption of the thyroid to problems, fertility in both men and women, weakened immune systems, digestive disorders, may cause food allergies, kidney stones, in fact the list is ever growing. This makes it a wild card in even the most healthy of people so is probably best left alone.

    May be look into some of the more primitive diets, rather like those that many call the 'cave man' diets that focus on meat, fish, vegetables, eggs, cheese, butter, cream, milk, yoghurt (if you are able to have dairy - but if not look to see if you are able to tolerate either goat or sheep's milk, cheese and yoghurts), fruits in season, grains like brown rice, millet, etc, nuts: Brazils, wallnuts, almonds, cashews, hazelnuts, peanuts (pea family rather than nut) chestnuts, etc.

    If you feel unable to eat any of the free from breads then why not have a go at baking simple scones. These are marvellous substitutes for bread and can be used as a sandwich. You can use any flour to make a scone - it is far easier than making bread as it doesn't require proving or any great technique. It can be used as a sandwhich and is very filling and nourishing.

    Firstly put the oven on to warm.

    Scones:

    8 oz (half-a-pound) 225 grammes of any flour

    pinch of salt

    one teaspoon of gluten free baking powder

    3 oz - 75 grammes of soft butter (soft cheese if preferred)

    2 eggs

    A little milk or water

    Place flour mix into bowl, add salt and baking powder, rub in the fat - quickly beat in the eggs and add just enough liquid to make a pastry consistency.

    Place into a rough round on a lightly greased dinner plate - taking a knife mark out by crossing through the mixture

    Bake at Gas mark 7, 220°C, 425°F for 15 - 20 minutes or until lovely and golden take out and allow to cool.

    I often make these kind of things and they are much better for you than anything that you can buy.

    You can also use the same recipe and vary it by adding nuts, dried fruit, fresh fruit .. whatever you feel like and enjoy.

    I hope that this helps a little.

  • Thankyou very much,sorry for my delay in replying but my lap top is broken and I have trouble logging in from my phone, frustrating!

    I have tried the scones 3 times now, delicious, but mine are very dry and crumbly. I'm making it into a circle about 6 inch and 1 inch deep.and my oven is fan assisted. What am I doing wrong?

  • Hi Ian, With electric ovens (mine is gas but I've had fan assisted ovens in the past), it is often wise to make any cake mix, scone mix, etc a little more moist. This can be done by replacing a tablespoon of the flour with ground almonds or if you prefer - replacing some of the liquid with a little vegetable oil or nut oil .. I often use this trick and find that I am able to freeze things well. I always cut up the slices first though as trying to do so after freezing is extremely difficult. If you take them out of the freezer but don't have time to thaw them then they toast up really beautifully.

    Apologies for not seeing your question here earlier

  • No it's ok I only just posted today...

    Right.. I've tried again but they look the same, crumbly, there hot now though. I did use some almond oil this time, but I'm not sure how much liquid to use really, I've never baked before so I don't know what it's suppose to look like. In measurements, how liquid goes into the mix? Or how much oil? I'm using doves farm rice flour is this ok?

  • Sorry... 'how much liquid I meant'

  • If you want the scones so that you can use for sandwiches, etc ... then what you need is to end up with something that looks and feels similar to dough rather like pastry - in other words not too sicky. What may be of help when you finally are ready to place your scones into the oven is if you place a small cup or bowl half full of water at the base of the oven .. this adds moisture to whatever you're baking. This is how people used to cook over hundreds of years before we got 'posh' ovens. I rather think that many recipes - especially like cakes, scones, breads, pies, etc are vastly improved if we go back to using the methods of our Great gt gt gt grandmothers once used. I know that many top chefs still use this as a means of increasing moisture into whatever they're baking.

    Always remember that we are all individual and we all find different things wonderful. It is useful to mess with any recipe until you get it how you really enjoy it - so never be frightened to add an extra egg, a little more butter, some extra oil, a bit more water and eventually you will have it exactly as you enjoy it.

    You can make the mixture a little more sloppy if you want it in a cake or loaf shape - I often add coconut, ground almonds, sesame seeds, walnuts and dried fruit which I soak in a little fruit juice (usually pineapple) some boiling water and a large splash of walnut oil.

    The other year I read a book called 4 ingredients by Kim McCosker & Rachael Bermingham and was surprised to find that they had a cake that required no fat at all surprisingly - I tried it - it had too much fruit in it for my personal taste but it did teach me that fat is an optional thing in a cake so you can use alternatives. In their cake they used 1Kg of mixed dried fruit - 2 cups of cold tea to soak the fruit over night - and 2 cups of self raising flour ... and that is all.

    I am sure that your scones or cakes will be wonderful and just how you like them after a few little changes to get them exactly how you like. :)

  • Thankyou for your lengthy reply.. Batch no.4 is just as dry, soon as I chew it, it sucks every molicule of moisture in my mouth an sets, ha ha, till I drink something. They'd e good for a practical jokein somebody if nothing else.. I'll try tweaking it and the tips you gave me.. Thanks again

  • Ian, I have tried many flours and tend now to use Dove's Self-Raising gluten free and I have never had anything turn out dry with this particular flour. I find rice flour tends to make things drier and needs more tweaking. Hope that this may be of assistance.

  • It certainly is.. Thanks

  • Hi Again Ian, I didn't answer your query regarding gaining weight. I wondered if you may benefit from doing the opposite to what the advice is to obese people to lose weight.

    Last year I read several of Zoe Harcombe books and found one piece of advice that she gave quite illuminating. She advised that to lose weight you should never have carbohydrates and fat at the same mealtme as it piles on the pounds.

    So what if you tried the opposite of her advice: If you are having carbohydrate such as a baked potato then add something fatty to it - I notice that you are unable to have lactose but what about goat's or sheep's cheese mashed into it. If you have baked beans add eggs, may be bacon (choose ones without loads of additives) or fry a little fresh pork, liver, etc. Try what the italians do and pour on a little oil onto your scones. If you have the rice and vegetable paster swirls (these are fattening) but to make them more so - once they are boiled and cooked, toss them in a little olive oil. Try making your own museli - use flaked almonds, dessicated coconut, wallnuts, sunflower seeds, a thin slice of cake cubed, chopped dates, raisins, and anything else that you enjoy the flavour of then pour on a little goat's milk or yoghurt .. perhaps put a dollop of honey on the top to stir in.

    Cottage pie made from pork mince to which add wafer thin carrots, peas and topped with a layer of boiled mashed potato to which you have added a little goat's milk or cheese and finished off under the grill.

    If you try and combine fat and carbs with as many meals as possible this should aid you to gain the weight.

  • Got the mix right eventually.. But was feeling rough since eating them.. Couldn't put my finger on it, Til I read the ingredients on the glazed cherries I was adding.. Wheat! Silly mistake, never thought to check them!!!

  • It gets everywhere Ian and we're all annoyed that in some cases they do not appear to list it on the ingredients. I was surprised to read by someone else's notes that it is often in dried fruit especially the dried mixed fruit varieties and often in spices as packing.

    We could really do with a symbol like vegetarians have that when somethine has zero gluten they should by law display .. it would be such a massive help to us all, I think!

    I'm pleased that you eventually got it to suit you - I cook this sort of thing regularly and often have for breakfast and find them especially useful if I'm on a journey .. as for some strange reason I always feel the need to eat when I'm travelling! Lol!

  • Lol... I get hungry the min I pull off the drive!

  • I take it you are talking about any gluten free flour? Not just ''any flour'' as stated...just to make it clear to someone who may not know. I find Dove's farm flour and bread mix give great results and do not affect me.

  • Hi Sappho, Yes, and it can be any type of GF flour including cornflour ... it's all a matter of personal taste as it is best to tweak any recipe until it suits you personally as the main thing with food is to enjoy it. I usually use Dove's too but often put in a fair amount of ground almonds but do jiggle about with the ingredients until you find a mix that you really enjoy.

  • Very brave tony, I was going to go on a cruise but I'm a bit dubious now

  • How did you get on?

  • Ian, I really do feel for you. I'm coeliac and badly lactose intolerant. Initially I felt so hungry when out, I wanted to scream. Now I have car pockets stuffed with dried fruits (no glucose syrup), nuts, packets and jars of olives. I have little 20ml(?) lactofree nets of 'milk' stuffed in the glovebox. All these for emergencies. I make a flask of tea if I'm going to be gone for the day and take fresh fruit. I'm buying about 2 kilos of bananas a week these days!!! Packed lunches might be fritatta (see below), rice, chicken, turkey, or red meat and salad. Pity I'm not weight-training I could look ripped! Eating out socially is a bit of a no no but when I have done I select something that can't be messed with like a plain jacket potato and salad. Ask to read labels of ingredients like dressings etc. I met another coeliac who just ate crustaceans in a restaurant. I have DH so had to watch the amount of fish I ate but seem to be much better these days.

    I do get inflammation when I don't follow my own rules (pinched one of OH's chocolates last night and was windy!) but when I do I feel good. A lot of the GF food is quite fatty (13.5g of fat in bread!) and gave OH acid reflux when they tried it.

    So re lactose intolerances - try the alternatives. Get some lactase enzymes like Solgar wafers or Quest tablets. They're expensive so just chew one (sometimes 2) if you need to eat a dairy meal out. They're a bit laxative so test yourself first and don't overload the dairy!

    Re bloating, try a digestive enzyme like Solgar bromelian tabs (careful, not all brands are wheat or lactose free!) or try food combining so that you eat carbs and proteins at different times of day. Sounds whacky but it really helps me when I'm a super gas-bag. In fact now I don't have root veg with any meat meal but save mine and have it in an omlette/fritatta with a few sundried tomatoes the next morning/day!

    Re depressed/fed up: Get a notepad or diary specifically for this and write down your symptoms . I found one that I'd written 18 months ago in when I was drafting a rant to my consultant - not like me ;-) - and hey, I'm a lot better than that sick person! It made me feel much better. And focus on what you CAN eat rather than what you can't. I'm taking a calcium/vit D supplement and have to say the clouds are lifting.

  • Thanks I will try those tablets, are they from health shops?

  • I've bought them from an independent health shop (not available in H&B) but I've seen Solgar are online. I also meant to say I did find a lot of benefit from probiotic supplements. Best I found were from Boots called Kordels on 3 for 2. I kept them in the fridge door. They just seemed to do the trick when all else was failing.

  • Thankyou

  • Just discovered today that Kordels have been taken over and the tabs have changed - hell, they were the only pre-pro biotics free of lactose, gluten, wheat and wheat/corn based filler free. Back to the drawing board ...

  • HELL!

  • I buy mine from Quest on their website directly - they are 'everything' free...

  • Wher are the nets of lacto free milk from

  • The 'nets' of Lactofree are from a big Tesco but I've also seen them in Asda. They are in a box next to the UHT milks/milk substitutes. Ask if you don't see them, they just help make you feel normal.

  • Thankyou.. I'll get some as I can then have a cup of tea when visiting

  • Hi Ian, what a long time to still be feeling so ill for. I was undiagnosed for a huge number of years and the damage to my gut was very severe. It took about a year for me to begin to feel well again. At first I was diagnosed as gluten intolerant and couldn't have GF food on prescription and 20 years ago there was very little GF food available in the shops. I do now wonder if because I didn't eat GF food during my first year of being GF it helped my gut to heal. I ate loads of veg and rice. I would take cold salad potatoes tossed in butter with me as a packed lunch if I didn't have recourse to a microwave. I did eventually get my coeliac diagnosis and then started eating GF bread etc on prescription. I had no problems tolerating any of them, possibly because my gut had completely healed before even 1 part per million was eaten by me. I also think GF food is full of all sorts of chemicals which can upset a fragile gut. Maybe you need to avoid all but very safe food for a while. I agree with the idea of keeping a detailed food diary, some thing may just stand out. When you go out to eat, take your own little bag of goodies with you...I take salt/pepper, mustard, soy sauce, ketchup, gravy cube(Anthony Worrall Thompson) and anything else I might want to accompany my meal. I also choose very safe options which is very boring but a better alternative to being ill. Also, as to the camera, have you considered having the sedative? It doesn't mean you're a wuss.....far from it. I have no recollection of mine at all. Good luck, I hope you start feeling better soon

  • Thankyou. Yes I know I should try the sedative but I live on my own and like to drive there. I don't like to mither anyone for a lift

  • Ian, I've just seen your earlier question about oats...could well be why you are still feeling poorly.

  • I don't think that was me..

  • Ian do not give up many Coeliacs feel pants after diagnosis and it takes everyone a different length of time to heal and feel better. Remember that although the stomach villi are damaged coeliac affects all tissues in the body to a varying degree as it's an auto-immune disease.

    Being diagnosed a coeliac certainly boosted my cooking skills. I can highly recommend the Jamie Oliver and Delia cookbooks - it's simple to avoid gluten.

    Open up your kitchen cupboards and give away all of the items that contain gluten. Then create a new GF version. It's very empowering. You can get some great Tamari GF soy sauce in Sainsbury's, Just Bouillion and Anthony Whorrell Tompson gravy granules. The 'Look what we found' range of pouch meals are handy for work and staying at friends as they contain decent ingredients that you can cook quickly. M&S now do more GF food items than ever before (just read their ingredients) from GF meatballs to fish n chips. Waitrose have also developed their range - in the normal and Free From section.

    Places you can easily eat out GF (athough you'll always need to see a mgr and make a judgement call yourself are):

    - zizzis (normal mains & GF pasta)

    - Nandos (handy for fast food anywhere as they seem to be on every highstreet)

    - Leon - healthy natural food

    - Carluccios one of the 1st with a GF menu

    -La Tasca - also now do GF beer

    - Many curry houses & Tapas places are naturally GF

    It took me a long time to discover that artifical sugars given to me by the Dr for low calcium and vitamin D were causing me problems. Many coeliacs cannot tolerate: mannitol, aspartamene, xyilotol.

    Also bear in mind that whilst your villi heal even trying to digest complex carbs like potato or leafy veg will be problematic. That will create gas and cause internal bloating. Try peppermint tea, eating slowly and avoiding foods that you notice this pattern with.

    Personally I've always avoided Oats since diagnosis as the protein is very similar to gluten it can cause problems. Try ditching those and compare how you feel in your food diary. Let us know how you get on.

  • Thankyou... I just find it all so time consuming, I eat a lot of food, just to maintain a normal weight, no sooner have I ate I'm wondering what meal is next.

    As for eating out.. I do brave it sometimes, last I went to a pizza place in Manchester , and I didn't really enjoy the GF dairy free pizza. Was like a potatoe cake but gooey.

    Then just yesterday I was getting my meat for mycasseroles, Its an organic farm shop place, thought I best eat the good stuff seeing as I eat so much of it, anyway I thought I'd try there cafe bit. I asked the lady if they had out I could eat GF and dairy free. She shouts 'Janet the expert over' she says " right Erm gluten...Erm..dairy...Erm...right so you can't have potatoes cos they've got gluten in"

    I said.. You mean yours have?

    No all potatoes have gluten in them don't they?

    No only if there cooked in it, I said

    Let me speak to the chef she said...

    By this time I was bloating up at the thought of it, he then came to the hatch covered in white powder and dough.. I just said I'll leave it thankyou

  • Another thing that might help with more interesting food to cook at home is to have a look at some of the paleo diet sites (google "paleo recipes" or something similar), what's sometimes referred to as the caveman diet.

    Even if you don't buy into the main basis of the diet (no grains/beans, lots of meat and veg, pro-saturated fat, anti-processed foods/sugar), it's quite useful for anyone eating gluten free as it comes from a starting point that nobody eats grains (well, maybe some rice) and quite a lot don't eat dairy, so there are loads of recipes you could use as a starting point and adapt if you don't want the fat, or do want the sugar/beans.

    It's all very American, so there's a bit of translation involved, but there are masses of sites out there. Here are a couple picked at random:

    paleoplan.com/recipes

    nomnompaleo.com/recipeindex

  • Thanks , yes the Paleo has interested me before, I will look in to it again

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