TGF Chat

I have noticed that the TGF Stories page is starting to get all sorts of Q&A on it so here’s a new page for you to chat away – use Comments to chat to each other and me.

Update: Comments are now closed as the page was becoming enormous! I have left existing comments up as they are really useful. For more, come and chat with us on theΒ Trulyglutenfree Facebook Group

89 thoughts on “TGF Chat

  1. Hi all, okay so I’ve been looking into the condom issue and am a little confused. I see that there are Trojans, Trojan Supras (not latex) and Durex Avanti Bare (not latex). From what I can tell it’s the lubricant which is corny so the non-lubricated Trojans should be fine but if one wanted to use a lubricant such as https://www.lush.co.uk/product/447/Ultrabalm-All-Purpose-Balm then you’d have to use a non-latex variety but they are lubricated anyway. Confusion hot spot! Any advice welcome πŸ™‚ Man partner is getting the snippety doo dah but it takes a while to all get sorted I think!

  2. Hi All
    I have recently purchased Barrier Plan, so new to TGF discussions. On glancing through the TGF Stories page, I noticed discussion about shampoo. I have been using a product from Essentially Yours, their Fragrance Free range, Hair Shampoo and Body Wash, which is labelled as organic. To find it, go to http://www.essentially-yours.co.uk , choose Shop by category, then Allergy and Sensitive skin. There are only 4 ingredients in the shampoo: 1) Water (Aqua), 2) Cocoamidopropylbetaine, 3) Hydroxypropylcellulose, 4)Piroctone Olamine & Phenoxyethanol. On my year old bottle, the long named ingredients have explanatory descriptions: 2) coconut foaming agent, 3) vegetable wax, 4) mineral preservative . I don’t know how these would fare under Micki’s investigations, but I have found the shampoo very good for me (main problem Multiple Chemical Sensitivity with many food sensitivites, I have dry hair).

    • Sorry, I meant my contribuion to got onto the new TGF Chat page!

    • Great, Mary, thanks for that. That shampoo looks fine, if not beautiful ingredients, but I think some of their other shampoos in the non-allergy range will also check out although they have essential oils in whereas this doesn’t for anyone avoiding limonene (Becky, was that you…?!) Excellent, thanks for sharing. I have added it to my list to check out further. And welcome to the chat!

      • Hiya – sorry, yes, it’s me who couldn’t find ANYTHING sans limonene – so thanks! I’ll go and check it out πŸ™‚

      • I found quite a few things on my judging of the FreeFrom Skins Awards so I will have a look again soon for you.

      • Oh, coconut though *sigh*…but worth a try – don’t know how sensitive I am to it anyway…

        Micki, I have been wondering about things… I feel a little less sensitive to things at the moment, but don’t necessarily feel on form (although the drop in energy is prob due to the immense flu I have been suffering with – can’t seem to shake it!! Much better now but if I get tired symptoms try to creep back!) I am still not on BP full, although have been following the lead-in for months and then onto candida plan since a few weeks (wonder if I’ll EVER get onto BP!) …. just wondering if the prolonged period of strict diet and nutrients and pre-BP stuff can have already helped- can we hope for any room for repair even when other stuff is going on?? Like candida? It’s particularly the skin barrier that seems a bit stronger. So I am wondering really if I am going mad and clutching at straws (?! wouldn’t be surprised lol! Don’t hesitate to say if you think I’m a headcase) or if this is a real possibility?? I think I’m really worried about the candida thing slowing me down! Also, HOW strict on fruit must we be? My diet is so restricted that I just can’t cut it out… very honestly, I eat apples, one a day, sometimes a bit more… a tspn goji berries and maybe a pinch o raisins in the morning, sometimes half a banana with my son…and a few cranberries here and there. Have managed to resist dried apricots, figs, mulberries etc. I also eat “jam” which is sugar free compote in fact, but does contain grape juice concentrate :/ …… Am I strict enough? I figure that seeing as candida can switch it’s metabolism anyway, surely a bit of fruit sugar is ok…without, it would just switch to feeding off carbs no? Thanks for any eclaircissements!! πŸ™‚

      • Hi there, Becky, you are best on personal case stuff to email me, please, so I can advise specifically, I can only do general stuff on here. Perhaps we need to pick your immune system up a bit more after that flu and as for fruit, you can see from the candida diet that some fruit is certainly allowed. Have a look again at the diet sheet. You are right: you cannot starve a candida but you don’t want to give it a buffet either ;). PM me with your current supplement regime and questions and I will advise for you. Sounds like you are progressing though, and solving the candida is key to that otherwise it just keeps making you leaky again.

  3. I have been following the barrier plan to the letter now for over a month. I had given up all grains, but had been holding out on beans and potatoes, which I have now cut out. My energy levels have risen substantially and my mood levels are hugely improved. When I have bad days in these areas, I can trace it to exposure to something. The biggest symptom seems to be very strong anger reactions, which has been unsettling. I have struggled with depression and intolerance of others for many years, and did not know that it was related (at least in part) to what I was eating! Also, I took my basal temperature the past two mornings, and I had a normal temperature of 36.6! My husband has been very cranky with me about the even more strict diet I am following. However, I can tell that it is worth it. I do feel disappointed, though, that it does not feel safe to eat out with him at the moment.

    • Hi Maureen, thanks for sharing that and SO glad to hear you are feeling better. I hated having to say DO IT! but it seems it has worked :).

      Herein lies our problem, doesn’t it? In order to feel better, we have to cut the grains and certain lectins out, which inevitably restricts us in what we can do. If we can just get the hypersensitivity to resolve, life would be so much easier and most of us wouldn’t want to go back on them full time but a meal out here or there would be nice, I agree. It can be hard for our partners to get it too, which makes you feel guilty. I suppose the way to think about it is that you now have the answer to why you have struggled for so long and, if you choose to, you can ingest your sensitive foods and take the consequences occasionally. It puts YOU in control of your body rather than IT in control of you. And, hard as that is, I prefer it that way, even if I do moan about the unfairness and restriction of it all!

      There is hope that it is not for ever. Some people have already put certain lectins back in and extended their diets with no adverse consequences, but not everyone can do that. I have put back the occasional potato meal, a bit of choc and coffee here and there etc. I don’t think the potato likes me that much but I don’t get a major reaction any more.

      Personally, on balance, I would rather feel well but restricted. Well done, anyway, for taking the leap, and hope you continue to feel better and better.

    • Hi Maureen! My other half was the same, in the beginning…doubt, dimissiveness, disbelief etc etc from him but as time has gone by (I’ve been on the BP now for about 4 months I think) and he has seen how much it has helped and actually how much you get used to the new diet (now he hates eating out as he says that he is more than often dissappointed with the food as we eat so much better at home!!) he is a convert for sure. We both really watch what we eat now and go nowhere near a packet, well I dont, he does with some things. So I hope with you it will be the same. Just stick to your guns he will come around.

      I’m the same in that my main symptoms are raised skin sensitivities and anxiety. The anxiety is the worst thing to try and quantify isnt it because it’s hard to believe that food can cause mental issues BUT we are only chemicals and our poor brains, given a little nudge down the wrong road with some duff chemicals will react and then remember. I dont think that all my anxiety can be cured with diet but I do think gluten was the root cause and bad habits have been ‘learnt’ on the way. I am getting much better and combining diet with lifestyle changes and ‘therapy’ to reprogramme the ‘learnt’ pathways. All going good so far. Funnily enough I had the gluten gene test done way back and the genes that I have are neurological and skin! Fancy that eh? Anywa it’s obviously doing you good so keep at it and soon it’ll be second nature. I think that now, despite all the trauma and difficulty in the beginning, that this whole thing was a blessing in disguise cos Stu and Piper (my 10 year old) and both traditionally gluten free now and we all eat a very healthy and wholesome diet which has got to be good for the future right? πŸ™‚ πŸ™‚ πŸ™‚

      • Thanks for that lovely supportive reply, Debbie. Glad it is all coming together for you too; I remember how petrified and lost you were at the start; you have come a long way in 4 months, well done!

  4. Thanks Micki! Yes I guess I have, still feel like there’s a way to go but feel much more in control now which is great and all thanks to you πŸ™‚ I actually went for a 20 mile bike ride the other day which is the most exercise I’ve done in one chunk for quite some time. It did wipe me out for days so probably was a tad too much but I really enjoyed it and managed it pretty well πŸ™‚ πŸ™‚ πŸ™‚

  5. Wondering if any of you are taking a lectin supplement – I think i could have a problem with lectins in my diet as i seem to have a lot of the symptoms i.e. puffy bloated face and eyes, tired after I eat oats, grains, nuts and dairy. Unwanted weight gain and tummy bloating which doesn’t seem to reduce even when taking probiotics. Has anyone took them what have been the results and any side effects – are they safe to take and will they get rid of the puffy bloating face (which has been really bad for over a week now) and the bloating tummy

  6. I would like to do the nreath test for fructose intolerance but I have to be truly gluten free due to my tg intolerance- How do I get 25g of pure fructose to make up the test solution?
    I have over the last 5 days been on a low fructose diet and what a difference- I was testing the FOBdiet for what i thought was IBS – reading up the 2 are quite often confused. Interestingly much of the info comes from Australia and comments that many coeliacs/gluten sensitives over there are also fructose intolerant- Think fructose intolerance maybe easier to manage than IBS so hoping that this is the answer to my latest problems! Anyone else suffer from these 2 intolerances?
    Any help Micki on making up the testing fructose solution and should I be on a hight fructose diet before I do the test?
    Thanks

    • Hi Caroline,

      Glad you may have found some of your answer then :). Fructose intolerance does crop up quite regularly with TGFers and that’s why I recommend the test in the Barrier Plan at the start. As you say, though, it has been a right royal pain in the bum that the challenge substances the labs use are all corn-based. However, a solution may be at hand as I have been having this very discussion with A and, happily, his sleuthing may have unearthed a sugar beet derived fructose that the lab has given tacit agreement to, so watch this space! A has one more thing to check out and then hopefully, we can get these tests done more safely. I will advise so keep your eye out on the blog and here.

  7. Debbie Robinson

    Hi all, just a few things to share, Micki I cut out citrus fruits and haven’t had the chest issue since!! Hmm…strokes chin. PLUS had to come off multi vit again as was getting dizzy spells and headaches as before so something in that multi vit is def rubbing me up the wrong way. Micki are you any closer to finding an alternative yet? I know that Dr O suggested something didn’t he but wasn’t sure if you’d had chance to test them yet.

    • Hmm. Glad you found the culprit although sorry it was citrus! I am citrus sensitive too. No fun. MultiVit, I have just today chased the multi people again about the cassava/corn Vit C issue in the w/o Cu/Fe version and wait to hear. Not received the sample yet from Dr O, but I have to say I do not hold out much hope given previous samples :(. Hope I am wrong. Are you OK with soya (even tho a legume?). Today am considering an alternative but is fermented on soya.

      • Debbie Robinson

        Yes think I am ok with soya although have not had it for a while since being on the BP. Odd thing is that my multi vit is the one with copper and iron so no idea why it’s effecting me. It’s only a mild effect but enough to notice it 😦

      • Ah, don’t you remember we were stuck between a rock and a hard place with them because they changed the type of folic acid in the normal one, so we switched to the w/o version and then discovered the cassava/corn cock-up? Most people haven’t reacted to the folic acid change, just a few of us it seems but I did put a message in the BP about it for you in case. Re the soy version, then, watch out for the next TGF Supplement master list update as I will add it there if it turns out OK. Next update is coming out in the next 2 weeks.

  8. Debbie Robinson

    What’s the best oil to use for general fry and oven cooking? I have been using olive oil but wondering about rapeseed oil.

    • I use grapeseed oil – I think you can find that easily in UK now,but don’t know if organic (and grapes usually farmed highly chemical) it’s a great general oil as it is good at high temp, high in Omega 3s and tasteless (so good for making pumpkin seed spread and the like!)

      • Not sure about how much grapeseed breaks down but I certainly use it for baking because it has a good omega profile and, as you say, is tasteless.

    • Hi all
      Here’s a link to an article I found recently which compares cooking oils, says whether they are polyunsaturated, monounsaturated etc and gives their Omega 3-6-9 ratios. Hope it helps.
      http://theconsciouslife.com/omega-3-6-9-ratio-cooking-oils.htm

  9. I recently made my own lard from pure beef fat supplied from sheepdrove organic farm. As the beef is grass fed the like th meat the fat too supposedly has a good ratio of omeaga3 to 6 in it- Is this right Micki? You simply roast the fat so it forms liquid, pour the liquid into a jar and store in the fridge. Ideal for frying or oven cooking. I use very little oil in cooking and don’t bake so not overly worried with fat issues- more lack of it!

  10. Debbie Robinson

    Hi all, how’s it going? Micki I had a bottle of that Heron Vally cider last night. Was very tasty. Had the medium sparkling option apparently put straight into the bottles from the tank. Now since then I have had some very crazy stomach issues which is unusual for me as I dont really suffer that way. Also feeling slightly more anxty today than normal. So I’m thinking was it the cider? Too early to tell maybe and def worth trying again as it was sooo tasty. Quick question: what do people do about booze on holiday? Not sure if I can get the booze I need in Portugal and also not sure if I can take any. Any tips? Hic! πŸ™‚

    • Hi there, might be a reaction but might also be your stomach is not used too yeastyness! I would try a small amount once it has all calmed down again to establish any sensitivity rather than a bottle which might be enough to upset your stomach. Booze on hols: I take my own wine in my case!

  11. Hi. Does anybody know of any safe corn-free (clothes) washing powder? I think mine might be giving me a skin reaction……Also tampons? Also I was wondering what symptoms people with citrus intolerance were getting? I’ve been getting through a whole lemon each day as salad dressing etc and I’m wondering if it’s not agreeing with me. I always have a stuffy nose by the evening……. Ooo I just found some products by ‘urban fruits’ in the supermarket today: they’re baked cherries, pineapple etc and look like really handy snacks. They claim to have no additives etc so I’ve emailed them to find out if they come in contact with anything grainy in production, will keep you posted.

    • Hi Ruth, I use Bio-D washing liquid and/or Ecover bleach. neither are perfect but I also do an extra rinse just in case. Tampons. I have had replies back from some suppliers in my investigations but I’m not sure they have covered the spraying of cotton in their replies. I have given up and am using cloth pads – more to come on this. Suprisingly good ;). I couldn’t analyse them properly last month as I already had a migraine anyway, so hopefully will complete the trial this month.

      Citrus: like any sensitivity it can vary and depends where your weakness lies with that particular allergen. Mine is swollen oesophagus, skin rashes and eczema in my ears!

      Urban fruits – be careful, but do let us know. I am getting so I don’t trust anything ready made anymore. The more I find out through digging, the less confidence I feel! Fingers crossed for you.

  12. Help! Does anybody know any safe painkillers? I’ve got a nasty chest/throat bug and I passed out last night the pain in my throat was so severe, but didn’t dare take the paracetamols I’ve got in the house because they have maize starch in. Dreading having to get antibiotics, I’m going to try and sit it out….. Thanks

    • Oh, nasty Ruth, what a shame. The question of painkillers is a very vexing one, as it is with all meds since they contain at least one of our major allergens. See here where I wrote about painkillers and here about meds generally.

      In essence, there is very little to help us so, if you have to take something, you just have to make a judgement between how much will it help the current situation and how much will I suffer for it? Which is the lesser of the two evils? But if needs must, needs must.

      You could try taking some antihistamine like Quercetin or use the methods in the Bringing Down A Reaction factsheet too to try and mitigate it – this comes with your Barrier Plan so you should have that. Or, try using a natural TGF safe infection fighter like this. That’s what I do. I really hope it calms down for you. See your GP/pharmacist asap if you need to. I remember having so much mouth pain once, I took morphine from the GP and soluble steroids to bring the reaction from the morphine down!

  13. This thread had me running to the medicine box to check my pain relief tablets – not that I take them very much as I prefer not to. Sure enough all the paracetamol contain maize starch but I have some Galpharm Ibuprofen tablets which don’t! Don’t seem to be any nasties in there, but I have no doubt Micki will tell me if I’m wrong! Can’t for the life of me remember where I bought them but pretty sure they’ll be available from amazon if nowhere else.If I can find a list of their ingredients online I shall copy and paste it for you so you can do your individual checks.

    • That sounds hopeful, Chrissie. Can’t find them online, Can you pls help with the ingredients list then so we an have a peek? Ta. Fingers crossed. Although, having been on ibuprofen every day for almost 6 month for the mouth pain 3 years ago, that is what did finally for my gut I assume so I would rather have paracetamol any day if anything!

  14. I can’t find the inactive ingredients online so can’t copy and paste unfortunately. This is from the leaflet that comes with the tablets:

    Active ing: Ibuprofen 200mg
    Inactive ings: sucrose, microcrystalline cellulose, potato starch, sodium starch glycollate,povidone,alginic acid,colloidal anhydrous silica, talc,magnesium stearate,PVAP sealcote (polyvinyl acetate phthalate & stearic acid) croscarmellose sodium, sodium laurel sulphate, titanium dioxide (E171) calcium carbonate, acacia and carnauba wax.

    I hope none of these are nasties and I’m not sending you on a wild goose chase, but worth looking at perhaps. Although I have to say none of them sound as though you would willingly want to ingest them.

    • Thanks Chrissie, that sounds lovely and healthy doesn’t it?! If you cross reference this list with the corn list in your Barrier Plan, you will see that sodium starch glycollate is a possible corn ingredient. I would question croscarmellose too. Anything ending in an -ose is a sugar or starch so is a possible grain. Any chance you could check with the manufacturer for us so we can rule it in or out as a possible painkiller, please?

  15. Sure, I’ll get onto it later today.

  16. Just wondering if anyone has looked into increased copper with on set of menstruation/oestrogen levels rising and wondering if that could be why some of us have migraines bad PMS – If we have high copper/ heavy ,etals initially due to poor digestive systems then anything internally that causes a rise in copper could push our systems above a manageable copper threshold- just a thought to ponder on?

    • Yes, quite possibly. Also, zinc is copper’s antagonist mineral and if copper is high, zinc is low. If zinc is low (very common even by Govt standards), then copper will rise. Zinc is crucial for hormones, stress and immunity. One of the main reasons I do the hair testing is to look at the balance between those two. Good thinking, batman πŸ™‚

  17. Has anyone bought a spiralizer yet to make noodles with? Recommend a good one?

  18. πŸ˜€ hope you’re well surtout! x

  19. Hi, is anyone taking any TGF-safe zinc and selenium supplements they can recommend? I’ve just had my mercury amalgam fillings removed and I’m about to have my root canals extracted as I have a strong suspicion they could be related to my hypersensitivity, and continually losing more and more foods despite doing ‘everything right’. Anyway, it’d be handy to be taking zinc and selenium after the inevitable short-term increase in mercury from having them done. Thanks.

  20. I am exhausted and tired of this fight to not eat gluten. We have basically no money right now due to school/self employment and kids. I have to get food wise what I can and sadly that’s a lot of stuff with gluten in it! But I go completely opposite of what is said here about constipation. Less then half an hour after eating gluten I am on the toilet …. You know. :-/ so frustrating I feel sick to my stomach and have crazy diarrhea. But I have to make the little fruits and veggies we can afford last especially where my kids are concerned so I suffer. And it’s rough. I’m tired, bloated to where I look 6 months pregnant and feel ill. I really don’t know how to go about this right now. I use to live off veggies n fruit. And I miss them a lot!!!! Sorry just venting. And what’s worse is my doc was useless. she is the one that said maybe I have a sensitivity but hasn’t bothered to check into further. And I don’t go to doctors often so if I go its gotta be really bad for me to take it to her. Then I feel like she just shrugs me off. And I’m starting to think maybe my son has some issues wit it as well 😦 aghhh why does cheap food have to always be the mos garbage stuff! What I wouldn’t give for a bag of snap peas to munch on right now!!!!

    • Hi Weaverweb, so sorry to hear you are having a tough time of it then. I don’t believe that processed gluten foods are necessarily cheaper – often making meals from scratch is less expensive and they tend to go further/fill you up more in my experience but there is the issue of time too of course with preparing food and that’s sometimes the last thing you feel like doing when you feel so rubbish, I know!

      I couldn’t work out from your comment if you can or can’t eat veg and fruit. Certainly it could be the preservative of course, as you say and then organic stuff does get more expensive!

      My only advice I can give you at this stage is that you are doing yourself no favours by continuing to eat the foods attacking your gut and this can only make things worse in the future in terms of how you feel and becoming more sensitive to other things too. Sorry, don’t shoot the messenger!

      How about you choose your top 10 core foods and know that those are safe for you, eat those when you need more energy and to feel well, and gradually extend from there? Use the resources on here and the free Pinterest boards for food ideas. Smoothies, soups and casseroles/bakes/slow cooker meals are usually cheap, easy to digest and fill you up without the gluten.

      I hope that helps a bit. Anyone else offer Weaverweb any advice please? How do you do it?

      • Hi
        It can be hard – but it needn’t be. Eating gluten, even trace amounts, makes me feel awful. I feel like I’m about to get flu and get awful diarrhoea too. As well as gluten I can’t eat dairy, soy or citrus fruits and can’t drink tea or coffee.

        But the more you research the easier it gets. This site and Micki’s Pinterest board are good places to start and the web is full of information and recipe sites. We gluten sensitives certainly can’t complain about the lack of info on the web! I eat a lot of fish to make fish pies, or fish cakes both of which freeze well. Or tinned fish which is cheap and nutritious. I know I shouldn’t eat rice but I do occasionally allow myself some seafood pasta dishes using rice pasta! And I always try to make extra when Im cooking so I always have a meal in the freezer.

        Stick at it Weaverweb. The benefits are worth the effort and it does get easier.

        (It’s good to see you posting again Micki. I was getting concerned that maybe you weren’t well!)

      • Good advice there, thank you Chrissie. I make a lot of crab/fishcakes with sweet potato and find they work well.

        Nice to know I am missed Chrissie :). Not unwell, was just having a quick break but back in the saddle today.

        Y’see: I didn’t even mention the rice….

      • Phew! I thought I might get my knuckles rapped!

        Sent from my iPad

      • I don’t need to knuckle-rap; you know the issues and it’s always individual choice. I hope you catch the sensitivity before it gets to rice then πŸ™‚ Sadly, I didn’t and I really miss rice.

        Just making my first ever sweet potato crisps using a mandolin. And yes, I now have a cut on my thumb! They are soaking to remove the starch – apparently they crisp up better – and I am sucking my thumb. Oops.

  21. Thanks v much Becky, was going to try the ARG ones…..

    • Thanks FB for stepping in there whilst I was away and giving good advice :).

      Ruth, that zinc is a good one, yes and there are two recommended selenium ones in the TGF Master List which I think you have. It might be a good idea to take a homeopathic mercury to try and offset it – have a word with a homeopath who can make up sugar pills for you.

  22. Never thought of adding sweet potatoe to fish cakes! I love fish cakes πŸ™‚
    The issue isn’t so much boxed crap. I generally do make most things for scratch. Problem being being low on funds at the moment it is hard to feed the fam normal (wheat) based things or things with wheat in them without partaking myself as I am out of almost all gf flours etc at the moment and can’t afford more. We had to use the food bank for the first time ever last week and let’s just say you walk away with a lot of bread type things an garbage (mini cakes, cinnamon buns, wheat flour, bread, bread, bread. And no fruit!!! I realize it would be hard for these places to stock fruit and was grateful for what I got but fruit an veggies is mostly what I needed as we have flour etc to make bread just not gf anymore. Just having a tough time is all and I need to eat. Literally if I look at what is I my house I can technically eat at the moment …… Peppers, onions, carrots, mangoes, apples, tuna and salmon, eggs, potatoes(although technically speaking I don’t like eating potatoes they also seem to bloat me horribly as does rice :-(. I just really miss my fruits and veggies!!! It shall pass and money will come again just hurting right now. At least I had enough to buy more eggs and some mayo yesterday as I do eat a lot of eggs πŸ™‚ but the small amount of what I can eat has to stretch to my family as well as they need fruits n veggies too. I would like to just put the whole fam on gf as if its in the house I have a hard time staying away whe I get a chance to eat!!! Self control comes and goes regularly. Lol ughhhh

    • I am the same, really poor and trying to feed my family well without hogging all the good stuff. Works out that I eat well for the first week or two of the month – and then gotta be mega creative for the rest of the month! It sucks, but really no choice. You do what you can eh? My sensitivities are way too bad to waver from the restricted diet, can’t even really touch most of the stuff I’m allergic to. We had to get some help from the state too because we were so poor but that has come nowhere near covering my monthly food bill! Let alone the vits and supplements – which, frankly, cost the EARTH! Am working a little now, which has cancelled out the financial aid, made life busier and complicated – and left us with no more money than before! But hey ho, the universe will provide and for me it’s a step in the right direction for more future work… We wish the whole family could be TGF but it’s proving to be too expensive and very complicated! We have to drive quite far away to get our groceries as nothing I need is sold locally- save a few organic veg if you’re lucky (live in France, chemical capital of the world after the US lol) – so we have to try and be organised and consider quantities etc. Specialist foods in France are way more expensive. An example: delicious sugar free jam for under Β£1.50 in england… I have to pay between 3euros89 and 5euros90 FOR ONE JAR!! Ridicule! Mais vrai… 😦
      I must say that I rarely hear others talk about it and always wonder how much others are struggling in reality – but everyone puts on a brave front I suppose! Courageous lot us leaky gutters!
      I am not off lectins yet, so one tip is to make a massive beany or lentil salad and always have it in the fridge. Then I vary it everytime I eat it- like add chopped mint and beetroot (we grow our own herbs) or a different herb…or add a little finely sliced onion, or tuna, or mackerel (tinned), cucumber, radish, whatever you can get that’s going cheap or you can grow yourself on the windowsill if no garden- and flavoursome so you only need use a little. Another thing i do is eat a lot of root veg – often raw, grated – fills you up better I find. I make things tastier so they are more satisfying….I drink a lot of water and infusions (like mint)!! And I make spreads – pumpkin seed spread, mackerel spread, garlic spread, tapenade… they are things you can just make a little quantity of and use to spread on a TGF cracker/ or some TGF pastry and stick in the oven – just use a little each time and it satisfies a little hunger pang without meaning you eat into your veggie store too much. I can’t eat GF foods really except buckwheat – one make that doesn;t seem to be cross contaminated -so I make pure buckwheat pastry or pancake batter.
      This is probably not that helpful, but it’s the way I make a little go a long way..it depends on your current habits and availability of things, time constraints etc, I know… and it’s hard to keep enough weight on! Good luck. We have been struggling terribly these last months, that choice between bills, eating or medicine!!! So I am feeling your end-of-your-tetherness and worry πŸ˜₯
      Sorry can’t help more. But we are always here to ask for ideas/ moan at/ outpour at!!

      • πŸ™‚ thanks for your honesty. I was really beginning to feel like the only one that is struggling a bit. I was starving yesterday ended up eating a veg burger with the bun(non gf) uhhhhh so good going down so awful coming out!!! I am gluten for punishment it seems but we were at friends and choices were limited. Should have just ate it without the bun! πŸ™‚ sometimes I am just not that strong even knowing the end result! I am currently trying to find out where I can get bulk gf flours at good prices. And save up a bit of what I can so i can buy some!!! I had no idea France was that bad! For some reason France always seems to be ahead of us with a lot of things or so they make it seem so I just assumed this stuff as well! I’ve always wanted to go to France actually πŸ™‚ I am in Canada. But yes that’s my exact dilemma don’t want to hog the fresh stuff as my kids need it too!! I am thin as a rail with a protruding belly from not being able to eat properly. Lol look pregnant or like a starving child. 😦 I am starting to wonder what people are thinking when the donate to food banks! It is seriously 50% if not more garbage! Sweet breads sweet breads and more sweet breads! Apparently if your in need of assistant you can survive on sweet breads lol huh!

      • You are definitely not the only one struggling, Weaverweb, we all do to some extent or another. Just, as FB says, we all try and put a brave face on it. Do what you can to avoid but don’t let the stress of things get to you either – stress won’t help. If you manage to get one thing right in the day, that’s a positive. Little by little inch forward as you are able. If you are always trying to go forward, then you are helping yourself to heal.

      • Yeah you should see what people donate here too – nightmare, full of additives, just longlife crap basically! I keep the weight on by eating pumpkin seeds in a big way – I make spread – it’s just like peanut butter!! Just grind the seeds, add seasalt and grapeseed oil (good for maintaining weight) and mix up. You can also add a bit of xylitol or agave or honey to make it sweet if you prefer (might taste closer to peanut butter – my tastebuds have warped so I don’t need the sweetness anymore! and I eat it with jam :p )
        The other thing I try to eat (when I can find decent ripe ones) is avocados. Even if you’re not keen on them, mush ’em up with whateer you want to change the flavour – spices, mustard etc… And if I could, I’d just eat bags of nuts!! I MISS Pistacios!!!! It HURTS lol!
        I know it’s very hard but you really should try to never touch the stuff (bread)- wheat at least… once you MAKE that decision in your head, it just becomes reflex and it’s not so bad after – particularly if you can still eat rice or coconut or almond flour – apparently very versatile if you get the quantities right! There are lots of peeps on here to ask for bready/ cakey type recipes – for when you get some flour in! Look at Micki’s Pinterest board… πŸ˜€

      • Oh yeah and go SOUP maaaaad! Lumpy soup, smooth soup, sweet soup, bitter soup, spicy soup!! Apparently you absorb more goodness from a soup than from eating the individual veg…I don’t know if that’s true (anyone??) and I know it uses a lot of veg – but it also gives a lot of nutrients and easy on your gut. It’s like a little mini detox to stick to soup for a couple of days πŸ™‚ Or casserole. I do literally just carrots onions and herbs with mustard and slow cook…

      • Yes, you tend to absorb more and feel fuller with liquid food, FB, so soups are a really good thing to eat, plus smoothies, juices etc with added oils/seeds/nuts for extra calories if you need them.

      • It’s tough, I know, with the money thing. This should all be on the NHS! Makes me so mad. Just remember that the diet and food is always number one choice and the best healing part of the prescription. The supplement protocol is a bonus to speed and encourage quicker healing if you can but the avoidance and eating well whenever you can is the biggest healer. I am trying to come up with a Superfoods healing prescription to help – always so much to do but I will get there! Apples for a start are very mucosal barrier healing. Cook preferably with cinnamon and stir in some probiotics if you have some. Even if you just did that, it will help. Can’t do apples? Use pears. the advice is to eat 2-3 little ramekins of it per day.

      • Micki, do you mean add probiotics just before eating? Just after cooking? Thanks for the tip – I eat an apple a day and make compote quite often so good to know it must all be helping! Why did you say preferably with cinnamon? Do you just mean as opposed to sugar? (I never put sweetner in compote anyway…) thanks! πŸ™‚

      • Have a read of this excellent article, FB, which is all about a mucosal healing apple recipe: http://www.nutri-linkltd.co.uk/documents/apple_tolergenic_food.pdf.

      • Those spreads sound delicious! Are you able to share a few recipes?

      • Yeah – hop over to the TGF “food” page (trying to respect Micki’s pages – we’re always posting on the wrong ones lol!!) The newest post at bottome of page will be me with some links…

  23. That does sound hard Weaverweb and anyone could understand your resolve wavering in the same circumstances. There’s not a lot of advice I can give you though. Have you thought about making a tortilla – potatoes, onion, pepper, herbs, which is great for a quick lunch or even breakfast? Keep it in the fridge for those moments when you need something quick to eat. Smoothies are what I fall back on when Im hungry, but I have to use the nut milks as can’t drink dairy. And I always have a couple of hard boiled eggs in the fridge for snacking on.
    Anyone else got any ideas to help?

    • Tough indeed, Weaverweb and my heart goes out to you. Awful when you know what you need to do but money gets in the way. Can you get prescription gluten free foods I wonder (are you UK?)? The only other thing I can think of that MIGHT help is to get a gluten-digesting enzyme and if you have to have it, then at least you absorb less of it and it should lower your symptoms. But of course those cost too :(. Ask for a sample of one from a supplier to test and then do that with several suppliers – might start you off!

      I use a lot of root veg to bulk stuff out. Parsnip, swede, squash, cauliflower if you can get them can go quite a way and are quite filling.

  24. Ooh! sweet potato crisps, now those do sound good. I’m presuming mandolin the sweet potatoes, add a little oil and oven bake?

    (I am good most days, honest!)

    • Pretty much although I am doing the soaking/drying method to make them crispier. famous last words. I’ll let you know how it goes and Pinterest the recipe if any good.

  25. Debbie Robinson

    Silly question I know but has anyone ever found a hairspray that we can use? I never use it but need it for the ‘big day’ else my hair will deflate as my muffins do 😦

  26. Ummm… we have just had the realisation (a bit late, admittedly – drrr!) that I can’t really go swimming in a swimming pool with my little boy! We keep saying “oh, we really should take him swimming…” and whilst saying it aain the other day, my husband said “but wait a minute! HOW chemical would a pool (around here) be?!” …. was just wondering if you lot go swimming? Or if anyone has a pool or knows someone with a pool who upkeeps it organically?! Thanks for any info πŸ™‚
    I swam in a friends pool last summer and thought nothing of it…but thinking back, I was ill following our visit to his house, for what reason I didn’t know…and am now thinking it was a reaction to the pool chemicals…??

    • My view as a clinician has always been to discourage chlorine/bromine immersion when you are trying to heal something. Check what your local pool is using – many do not use chlorine at least any more – and then look it up. We went to P’s brothers recently and he has a spa and I just didn’t want to get in with all the chemicals! Check this blog post out that I wrote in 2010 – might help: http://mickirose.wordpress.com/2010/09/16/swimming-and-chlorine/

  27. Hello all! Anyone know if Debbie got married then? Keep wondering about it! Hope it all went well Debbie and you had something decent to eat on the big day!!!!!! Best wishes! xxxxxxxx

  28. Debbie Robinson

    Ah hi Becky, no not married yet! 2 weeks yesterday and I’m taking all my own food. Very excited but pretty hectic currently. Also wondering how many muffins I can shove into my suitcase for honeymoon!! Thanks for thinking of me though :):):)
    PS Zen pills by ARG are really great to take the edge off the stress.

  29. Haha, noted! Good luck for the next two weeks then, the honeymoon (may it be reaction-free!) and of course for the Big Day!!! x πŸ˜€

  30. Hey Micki – how are you? I was wondering which of the skincare award winners stand out to you as TGF in terms of corn-derived ingerdients? There are so many ‘natural’ cosmetic companies – SO confused! I simply want to find some shampoo!!! Being allergic to coconut, almonds and citrus seems to make this an impossible task! Hope you are ok? πŸ™‚

    • Hey – yep fine, thanks. Just had a week break by the sea which was fab.

      Shampoo seems to be our nemesis, I can see some possibles but they contain coconut so no good for you. I did come across this the other day though altho haven’t had chance to check them out yet – perhaps you could do that for us??: https://www.barianioliveoil.com/body-care/shampoo

  31. Debbie Lawrenson

    Hi all! Mrs Lawrenson here! Managed to really enjoy the wedding and the honeymoon without any reactions! Amazement!! Ate a lot of fish on the BBQ in Portugal and ate out a few times without a reaction which was great. Towards the end though I was running out of brownies and muffins so was looking forward to getting back to my baking! Incidentally I am feeling much better now all round but feel like I now need to take stock and perhaps get a few tests done. I still don’t feel totally right but I wonder whether a lot of that is anxiety? I’m wondering Micki whether before I start to try introducing things I should do either a barrier test or an AI test to see if there are any current issues test wise?

    Hope you are all well πŸ™‚

    • Hello there Mrs Lawrenson! Bet that sounds odd yet ;). So glad to hear all went so well and that you are feeling generally OK. Follow guidelines for reintroduction in the BP, Deb. Always best to have a peek if you’re unsure. Look at the breakdown checklist and decide if you have missed anything. Don’t forget that anxiety is a common reactive sign – most gluten reactions are neurological…do some relaxation techniques, check your adrenals???

  32. Debbie Lawrenson

    PS I know chocolate isn’t BP but I do eat it – it keeps me sane – I have a great recipe which is truly yummy called chocolate pie, I made it for my wedding day pudding, I will post the recipe in the food bit πŸ™‚ mmm

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