TGF Stories

Most people want to see how others are doing and listen to what they have to say about the TGF experience. So, that’s what this page is for.

There are already 57 posts in the Progress Reports and Your Stories category and 37 in Inspiration and Motivation.

I will add more in the comments below, starting with my most recent progress report which I will update regularly for you.

Please add your own progress reports and comments there too. What you have to say is SO important and someone somewhere will need to hear exactly what you are saying at that precise moment, so please do share and we can all learn and support together.

I look forward to adding my own progress reports and to celebrating and supporting yours!

Update:Β 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. I will, of course, continue to do posts to update you on my own progress πŸ™‚

185 thoughts on “TGF Stories

  1. Thanks Micki. The sweet potato flour thing was the next day so I dont think it was this that triggered it.

  2. Yes sorry about that, you know all privacy barriers come down and the focus is soley on ‘what caused the reaction?!’ Stu is so funny I mentioned to him that I had mentioned about sex on the blog and he was like “what?” I had to laugh.

    I do feel like this blog is a groups of fiends trying to help each other out though – which is nice and we have you to thank for this Micki πŸ™‚ πŸ™‚ πŸ™‚ you know with the lack of help out there this is all we have. Even after a few month use it’s a part of my life now…like calling my mum. That feeling of solice is very very welcome.

    • Ah, that is very kind of you to say so, Debbie. And I like the idea of us being a group of helpful fiends…:) Sorry couldn’t resist. V naughty!

      • Oh no! Ha ha ha ha ha, slippery fingers…

      • That is really nice Debbie, it is good to think we have somewhere to turn and can all be open πŸ™‚ (don’t worry Micki, we’ll try not to get too explicit lol!!) I feel the same really and it’s so good to know we can laugh about things – you’re like a little sitcom to me, your conversations -coz I don’t have telly out here!! haha, only joshing πŸ˜€ Btw, I would say Stu’s beardy area is prob to blame – does he use shaving cream/oils/ cream after? Or does he have beardy bits? Even worse, could have collected something in there – airbourne flour!! Gawd, the things we have to think about eh?!

  3. Possibly although I think otherwise he feels okay. It is weird though, I’m going to check our carbon monoxide alarm later I think! Make sure that’s working okay.

  4. Hi all, what shapoos and conditioners do people use? I have been using some from http://www.handmadenaturals.co.uk/ and they seem okay although they have got xantham gum in them and tocopherol but I dont seem to react to it. Have tried looking for products without those in and it’s impossible they all seem to have tocopherol in them. Any tips?

    • Hi Debbie – Happy New Year!!
      I never saw you ask this – I have an IMMENSE problem with cosmetics – they ALL contain lemon, citronellol, limonene, grapefruit, cocnut oil, sunflower oil, almond oil (any nut oil) etc etc et-bloody-cetara!!! Please let me know if you Ever come accross ANYthing non-chemical that does NOT contain these ingredients!
      For shampoo I use this http://www.goodnessdirect.co.uk/cgi-local/frameset/detail/917093_Yaoh_Hemp_Shampoo_240ml.html – it has tocopherol potassium sorbate and citric acid in it but I am fine with it. It took me a LONG time to find this – and it is the only shampoo IN the World that I use. I don’t have a conditioner and I use literally nothing else aside from olive oil soap (http://www.goodnessdirect.co.uk/cgi-local/frameset/detail/894411_Oliva_Pure_Olive_Oil_Soap__125g.html) and calendular oil (but even that is in sunflower oil, grrrrrr!) I also use this: http://www.goodnessdirect.co.uk/cgi-local/frameset/detail/922898_Potter_s_Distilled_Witch_Hazel__75ml.html I never used to be over the top about the allergens in my chem-free products – but then I realised there was almond oil in the oil I used for my face – and stopping it’s use made a big difference to me so I have to be careful elsewhere – I have made myself very ill before by touching moisturiser with limonene in – I am SO sensitive to citrus fruit! If anyone has ANY suggestions of the purest of the pure cosmetics, let me know!!
      Any make-up suggestions too?! I only wear light make-up – but my complexion is not great so don’t like to go bare-faced on days that I have to work etc.! Have you found anything else since?

      • Hi Becky,

        I am currently just starting the judging for the freefrom skincare awards hence I am getting loads of ingredients for products to review. Send me a list of what you can’t have and I will try and keep my eye out for you. Make up – how about Bare Minerals foundation, that’s what I use? You might also want to look at making your own cosmetics. See the Non Toxic House and Home factsheet for some help to start you off; I’ve included simple ways to make moisturiser etc.

      • Hi Becky! Happy New Year to you too. I ate far too many mince pies and choc brownies (very naughty I know – slap wrist). I use Bare Minerals makeup as per Micki’s suggestion. I use their powder, blusher, concealer and eyeshadow. I then use mascara and eyeliner from Nat Origins and all that seems to work ok for me. Skincare wise I use Saaf but I’m pretty sure that it contains citrus oils.

        I’m just about to order some new shampoo etc to try, the one I use at the mo has the usual suspects in but I might try another shampoo http://www.suvarna.co.uk/herbalshampoos/gentle-herb-shampoo.html it does have corn derived things in as Micki kindley pointed out but it says that if you use this you shouldn’t have to use conditioner. That sounds pretty appealing to me. I often wondered what the point was of using a shampoo that strips all the moisture out only to add it all back in with a conditioner! So might give it a go, super quick wash and rinse. Only problem is that my hair is pretty long, mid back length and very fine, and I dye it with henna so it does get a bit dry. Will see how it goes though.

        Will be getting married in July this year so keeping it long for the up-do but after that will be getting it chopped to a less demanding length!

      • Thanks for your suggestions πŸ™‚ I will have a look at it all now- and Micki, I’ll send you a list of ingredients if I get a chance to do it, thank you, very kind πŸ™‚

  5. Chat with R today which I thought might be useful for others to read so posting here for you. I recognised exactly how R was feeling:

    R: I’m not reacting to anything at the moment except the odd random accidental gluten attack but I’m on a really restricted diet and probably becoming a social recluse as a result! I can tell pretty easily when I’m having an intolerance reaction, I’d decided to try a new food each week but when ever I get to the checkout in the supermarket I find I’ve chickened out and ditched the chosen item on a shelf somewhere along the way so haven’t tried any yet! There never seems a right time to risk having a reaction, it’s so nice to feel in control…….. It’s probably time I branched out a bit beyond tinned fish, sweet potato and a few other fruit and veggies. it’d be great to find a drink I could order in a bar or cafe, at the moment I daren’t even order a cup of tea because of the tea bag reaction I had.

    State of mind is a huge thing, I fluctuate between feeling pretty low/trapped and elated at discovering the trigger underneath my health issues and being able to do something about it. It’s good to read some of the humorous corn allergy blogs out there, it seems the best way to deal with it, I think it can be too easy to get bogged down and depressed with the whole thing from some of the reading on the net.

    Me: Absolutely agree with everything you’ve said there. You sound just like me. Elated/terrified/bitter/thankful etc etc. SUCH a paradox isn’t it? I refuse to stop it letting me go out. I go to a coffee place, explain, pay the price for a coffee if they are funny and then get my flask out and drink my own! I think of it as paying for their electricity and the ambience/vibe rather than paying for the coffee, which is usually crap anyway. I tend to go to nice hotels where they seem to not mind me sitting there for an hour nursing my drink and their papers! High street coffee houses vary depending who’s on.

    R: D’you drink coffee? Which one? I’m just having weak darjeeling tea loose leaves. Was never quite sure whether my intolerance was the teabag or the green tea so I’ve steered clear of both!…. Good news, I just got my period exactly a year after coming off the pill so I’m starting to function properly again. I saw a patient yesterday who’s son had just randomly developed Type 1 diabetes at age 43 and his wife is coeliac but despite being ‘gluten-free’ has just developed autoimmune hepatitis….. Anyway, I told her about your website and she was extremely excited so hopefully they’ll look into it. I keep coming across so many people who badly need to know about this stuff but I realise many are just not receptive so on the whole I have to bite my tongue, especially around the GPs that I know, it’s v frustrating. I wonder how long before it filters through to mainstream medicine. The vitamin D message seems to be getting there so that’s something :-). But why oh why don’t so many people who are meant to be intelligent health professionals apply their brains and think rather than allowing themselves to be brainwashed by pharmaceutical companies, and using drugs to bandaid symptoms rather than looking for the route cause. Sorry!! rant over!! πŸ˜‰

    Me: Yay, good news re period – took mine about a year to come back after disappearing for more than five! I sometimes wish they hadn’t though as they can be horrid…

    Coffee: I am not supposed to be drinking it as it is a cross-reactive gluten food, but I found out that it can help the digestion if you have one after a meal and I do not have an antibody to it, thank goodness. I find if I buy CafΓ© Nero own beans and have it at home, I am fine, but if I try to drink it in there, I react. The manager says he has come across this with others and we think it is the filter they use in their stores or could something to do with washing up residues/cross-contam, of course.

    Agree with your rant, and thank you for pointing them in the right direction; I hope it helps them.

  6. Hi all, just a few little queries. Does anyone get wrinkly ends of fingers? Mine look really wrinkly and I’m pretty sure that I’m not dehydrated as I drink quite a lot of water. It comes and goes really but I was just curiuous if anyone else gets it. Also, you know that chinese medicine thing about your tongue? Well I wonder if there’s any truth in it? My tongue, at the back, has bald patches on it and I wonder if this is related at all to my small intestines? I’ve had it for a while now and it never really goes away although it does change slightly.

    I’m wondering if any of this will change once I start the BP protocol properly (starting tomorrow – been putting it off for various reasons).

    Thanks πŸ™‚

    • Tongue stuff definitely something in it, I often look at them to help see what’s going on. Wrinkly fingers, I don’t get that (something I DON’T get for a change, yay :)) but have seen it in others. I think it is dehydration partly but mainly related to lack of essential fats – in the protocol, get on enough! I’ve also seen it as part of allergy reaction (touching plastic etc), it’s common in coeliacs apparently (auto-immune deficiency of something probably) and can be related to magnesium deficiency. On looking it up, other ideas are related to low thyroid or candida.

      Good luck with your start. Introduce one at a time and see how each one is or just go for it and you can always double-back if you need to check if something is. Good luck!

  7. Thanks Micki. Yes checking my thyroid and adrenals is something I thinkI’d like to do next year. The docs have checked my thyroid and cleared it but as we know their tests aren’t always that acurate. I think I just had the bulk standard thyroid test. Yes I’m going to hit it all at once, must print out the supplement plan!!

    • Get going! Although I have to say it might be worth starting after Chrimbles now in case of reactions giving you a miserable time! Unlikely but fair warning..Re thyroid, absolutely right. Just got some through for a px with ‘normal’ thyroid results and they are far from it..makes me mad! Re adrenals, am writing the adrenal plan currently and it has reminded me of the very significant link between steroid production and allergy reactions. I need to add more about this into the BP at some point, I think.

      • Ooh okay. Do you mean reactions to starting the supplements? I was kind of hoping that they’d make me feel better (not that I feel too bad at the moment). You might be right I guess. Perhaps just start the multi vits and the rest after christmas? What do you reckon? That’s for the heads up though πŸ™‚

  8. Thanks not thats!!

    • Yes, you are trying new things in just the same way as food. They should be Ok but I always advise caution in case as you know how sensitive we can be!
      Btw, did you try the heron valley cider?.

      • Yes I see. Going to do multivits then and that’s it. Feel like I need the multivit.

        Not ordered it yet, but am just about to order a half and half sparkling/still box. Did you get your samples yet? Have you tried?

  9. I’ve got my samples but it suddenly occurred to me whether the apples were fermented/stored at any point in ex-grain barrels initially. I sent a msg but not heard back.

    • Ah yes…hope not! Are you emailing Tasha? She’s quite helpful.

      • Yes, she’s not replied to that one which I hope is because she is v busy with seasonal orders and not because it is bad news! Perhaps you can ask too.

    • Just got this message back from cider people:

      “Sorry for the delay in replying, Tash is away at the moment. Unfortunately the cider has been matured in ex-Whisky barrels. I will speak to Tash when she gets back in a few days to see if we can bottle some cider straight from the storage tank (plastic) before it goes into the oak barrels and, hopefully get some to you in time for Christmas.”

      Would be great if they could eh? Guess that means that your samples will be no good?

      😦 😦 😦

  10. Hi everyone! Okay so here’s the thing. I go to my daughters Christmas play this evening. Whilst I’m there I have an ‘episode’ (not even sure what to call it). The same as I had 2 weeks ago (and the same that put me in A&E so many times earlier in the year) when I said I may have reacted to tequila or something else. Anyway, I just wondered whether anyone else gets any similar experiences. It comes on very suddenly, fine one minute then BAM, and the only way I can describe it is, well if you imagine a super hero movie or Twilight or something and someone gets injected with something that soars through their veins? That’s what it feels like. I can only assume it’s adrenaline, like 5 dumps in quick succession as if my body has gone “oye oye oh oh no no emergency!” it leaves me tight through the neck and jaw as I guess things tense up. I now don’t go to A&E anymore although it’s so very scary I always nearly feel I have to panic but I don’t, I sit and wait it out telling myself that it will pass soon and it’s better to keep calm. It does pass after about 15 mins or so but then I’m left with an inflamed chest/throat (OAS?), tiredness and usually a headache. Now both times I may have suffered cross contamination a few hours before but I can’t be sure. Micki I know that you may be able to relate to this but I wondered if anyone else gets the same. It is so awful I do have thoughts of “what if there’s something else wrong with me? what if it’s not a reaction to anything but just happens?”.

    So now I’m thinking, maybe I should just eat a crumb and then it’s like a little experiment, I would recognize the reaction straight away and then at least I know for sure that it’s the gluten causing it. I know we all think this at some point but surely it can’t do more harm than accidental cross contamination which we all know happens and surely it would help to confirm things?

    Any rate, still feel awful now, gobbled a couple quercetin when I got home and felt quite proud that I didn’t run out of the hall in panic (very strong urge to do that).

    Before I went to the show I ate my homemade pate but it was from a pot that Stu had been eating from and he had been double dipping, I thought this and made efforts to avoid the edges and just took from the middle but in hindsight I perhaps should have just left that pot to him 😦 😦 😦

  11. Oh Debbie…I am afraid I can’t say I get the same type of reaction. I know what you mean about wanting to try a crumb to test out whether it’s the suspected gluten attack or not. I am now familiar with that gluten feeling – I don’t know, maybe you should try a crumb (Micki?!) My Gluten reaction is usually a sudden onset of headache in the hours following, then a general bad mood/ feel down / crave bread or anything containing gluten/ voracious appetite! Feel like I can’t be bothered to do anything too. Hate it, reminds me that I actually used to always feel like that! Outside of ‘poisenings’ I don’t actually crave those things anymore, so that for me is a sure sign! Maybe these could serve as clues if you notice any of these symptoms too? Hope you feel better soon πŸ™‚

    By the way – I am always meaning to reply to you about that time you said this forum is like a place where we are all friends and we support each other and have a good laugh – I couldn’t agree more! It really is invaluable what this blog does to make us feel like we’re not alone in the world -and even though we all have wildly different resulting reactions, we can be so open with each other… it also shows us ways in which others suffer which sometimes makes you grateful that you don’t have that particular symptom too! I’m sorry I sometimes don’t get a chance to be more involved in hte discussions :/ I try to check back often though and you and Micki do make me chuckle very often! πŸ˜€

  12. Thanks Becky πŸ™‚ glad you don’t get the same reaction, wouldn’t wish it on anyone. Feel okay today aside from the very irritating inflamed throat/chest thing which if it goes at all like the last time will last around 3 days. Am now thinking it could have been the water too as I think I drank water from the filter before I’d flushed it through a couple of times as you’re meant to. Who knows? I can cope okay with this bit I just hate the initial reaction which seems to effect my adrenals but doesn’t happen too often these days. I just wish I knew if it was the water or the crumb and then I can make doubly sure to avoid it!!

    Making mince pies this weekend though – that’ll cheer me up (used to be a cake monster so really missing the cakes). Hope you are getting all prepared for christmas. Is it the South of France you live? Do you still do the tree etc?

    Tell you what! I’m sooo looking forward to meeting people next year when we have the get togethers that I think Micki is organising. Hope you can make one of those!

    ❀

    • lol, so annoying when they don’t work (smileys and things) haha… yes, would really be great to make one of these meetings if they do happen in 2013. Will have to see if it coincides with a visit back! I used to bake a lot too! 😦 But like I say, have got used to living without (surprisingly!) and don’t really crave it unless someone else waves it in my face (in which case, it is actually just pure jealousy!!)
      Yes, South of France. They don’t make such a big deal out of xmas – except for the whole big family meal on xmas eve… but yes, we’ll have a tree – if anything just to create a home for the milllions of presies my son is getting!! Receiving packages for him everyday! Usually come back to UK to see all the family but this is our first little family xmas…Cosy! Now to come up with a cosy xmas menu! hmmm….
      Hope your resction doesn’t last too long πŸ™‚ xx

  13. ❀ meant to be a heart BTW but didn't work.

  14. Just to say am not ignoring you, Am checking something out with a colleague. Glad you are feeling brighter today at least.

  15. No problem Micki! I know you’re a busy lady πŸ™‚

  16. Thanks Becky, me too I think it definately helps well you know that you’ll feel better soon, looking forward to that! Sounds lovely to have a big family chrimbo meal on xmas eve. We go to our local barn with the villagers (sounds dodge but isn’t) and sing carols with the local steel bank, eat mince pies (hence determination there) and drink mulled wine (will take my flask!). We live in a small village called Michelmersh just outside Romsey and it’s very festive in Romsey which is nice. Luckily we’re having our first xmas day at home too, me Stu Piper and Stu’s kids Mads and Will are with us for the first time on xmas day so that’ll be great and Stu and I can cook up a TGF feast which is good news for me. I’m having beef though, not Turkey.

    Now starving, gotta be lunchtime πŸ™‚

  17. Hi – am here now. Busy day. Don’t people know it is almost Chrimbles?! Not really, you know I lurve my job πŸ˜‰

    Right, Deb, I was a bit concerned at the adrenaline rushes there so I was just asking Ruth at What Allergy about what anaphylaxis feels like. Happily one thing I DON’T have, praise be!

    Here is what she describes:

    “Mine starts with tingling in the throat and or lips. Sometimes it bypasses the lips. I get a kind of shuddering in my throat. As a kid I used be violently sick at this point, which probably saved much of the worsening of the attack. As an adult the mucous builds like one massive cold, eyes stream, nose pours, like baby snot, throat burns, hurts like nothing else, like it’s closing up and the mucous stuffs it up even more. My lungs strain to work and hurt, my back muscles get really tense. I guess I get a lot of chest and back pain after, that’s where most of my tenseness goes. But it could explain the tenseness elsewhere. It’s terrifying and yes, also, sometimes a terror, panic, I want to run, move, which is exactly what you shouldn’t do. I feel terrified I am going to die. They say β€˜feeling of impending doom’ and that’s exactly what it’s like. It’s horrible. I am learning to just let others take care of me but it’s awful.
    It feels like you are raging drunk and kind of can’t think straight and I can often behave very irrationally, esp. if I’m on my own when it happens.
    Afterwards I am exhausted and ALWAYS get a headache.”

    That is really useful and kind of her to share. I’m not convinced yours isn’t a standard gluten/food sensitivity type reaction but you should talk to your GP and ask for IgE testing if you haven’t already, explain what happens to you and ask if you need an Epipen. That way, you are covered. That said, I tried that with my throat closing and they didn’t give me one!

    Most reactions I have and hear about are very similar to yours, Becky, although the initial reaction depends very much on where the weak tissue/gland is. In our cases it seems to be neurological and in the head mostly. In yours, it sounds like your adrenals. In others, it is the gut (IBS), skin (eczema/rashes), lungs (asthma), sinuses (pain) etc. It can literally be anywhere and in any combination. I am convinced it is a food reaction rather than anything else as it seems to happen only after exposure (double-dipping, water, tequila etc) but, as I say, you should talk to your GP in case. I can’t tell you try a gluten crumb until you have checked the anaphylaxis issue out, of course. If it isn’t that, that is a good strategy but be careful and prepared. I did it with the tap water today – and was, thankfully, fine so far but I had steroids and quercetin at the ready in case!

    Can anyone else chime in here about their reactions pls or about anaphylaxis generally?

    Both your Christmas plans sound lovely and put mine in the shade. I won;t even think about it much until Christmas week and then I normally run round and do everything in 2-3 days, Santa hat on and covered in tinsel usually!

    Thanks for your kind words, Becky, about the blog – I am so glad we all help each other. We need more people chatting on here too, don’t we so perhaps some shy peeps will join in more next year with us? Am indeed planning a meet-up so in the New Year, I will be asking what you need or just deciding for you and getting on with it knowing me πŸ˜‰

    Hope you feel better soon, Deb. Hang in there. At least they are happening much more rarely now, just SO horrid when they do.

    • Ruth also added this in a recent email so sharing it in case it helps:

      “yes I do get sort of a head rush sometimes. I can flush red almost on immediate contact with the wrong food too.
      Most embarrassing but at least people see what’s happening.”

      • Debbie Robinson

        How interesting! Not sure if I go red, will have to look out for that.

        Off to see gastro guys today. Not at all sure what to say to them TBH! Just not sure if biopsy will show anything up at all by now and I guess that’s what they’ll be interested in.

        Have got bread eating test this saturday at docs…seriously not looking forward to that!

      • Ugh to both. Good luck and may any reactions be as minimal as possible. Don’t forget to take the BMJ piece about recognition of NCGS with you for ammunition!

  18. Defo will do πŸ™‚

  19. Hi Micki, thanks for that. I’m not sure it’s laxis either but I think you’re right and I should go to the docs and ask again. That was really lovely of Ruth to pass that on and helps a lot. Some of what she says rings true but some doesn’t, I don’t get the streaming nose/eyes or mucous but I do get a tensing of the throat and jaw usually and a headache afterwards. Still have the sore chest/throat now though although it is fading and that doesn’t ring true with laxis does it? I also get pretty shaky afterwards like shivers but they don’t last long at all (that’s the after effects of the adrenaline I think). Part of me wonders whether it’s just anxiety/panic again, it’s just so hard to work it out. I didn’t feel anxious at the time, I was watching a play, but perhaps I was without realizing it. But then that doesn’t explain the resulting sore chest/throat. I think I’ll go to the docs again and see if they can test me for IgE. They seem so reluctant to do anything though. I can only try I guess.

    Wow you’ve got Christmas all worked out! Sounds like a good approach to me!

    Do your steroids halt your throat business straight away? How do I go about getting those?

    Will try and get an epipen too and that will help I guess. Perhaps my visit to the gastro people in a few weeks time will help also.

    I do think mine is intolerance related rather than allergic but what do I know! It’s so hard to even rationalise your own symptoms sometimes. Also I’m not sure how quickly laxis comes on. Mine came on about 1.5-2 hours after I’d eaten/drunk anything. That’s too long for laxis isn’t it?

    Sigh. I need Inspector Poirot!

    • All of that is why it sounds like a normal food reaction to me but just that you don’t get a respiratory attack (like Ruth), yours seems to be adrenal. They should do IgE testing if you mention your symptoms.

      Steroids: I asked for them (predniosolone) from my GP in case of another attack and actually only had to ever use them twice thank goodness. You need soluble ones to avoid most of the allergy nasties in the usual caps/tabs/liquid. I found, when I have used them, it reduces the symptoms within 20 minutes for me. I wouldn’t want to use them long-term but useful in a panicky situation. Talk to your GP. Note, though, that they do contain saccharin that may come from corn. I haven’t used them in a long time but be aware. Likely that the steroid power will override the reaction but… I also find they give me an awful coated mouth for 2 days afterwards.

      • Hi Micki, hope you had a lovely christmas and are ramping up for new year celebrations! I have a quick question for you. I’m in Devon and until now have managed to stay reaction free πŸ™‚ but after a meal out last night for Stu’s birthday I’m now suffering with the chest things again and was thinking I might go to local health centre and ask for predniosolone to help get it down with it being NYE etcm :(. We are only having a family meal at Stus mums but still…do you reckon it’s okay to take? Brother in law is a physio and has some steriod inhaler called symbicort but it has lactose in so I’m not keen to take that. Also gave me nasonex which has citric acid in so no good again. What do you think? Ride it out (it’s just manageable) or go for the steroid? Never really taken steroids except for my old scalp lotion Betnovate so a little worried about steroids being the ‘bad guys’. Thanks and happy New Year!!! πŸ™‚

  20. This is Debbie BTW! Not sure why it came up as anon!

    • Hi Debbie. Sorry, I was off line for a while so hope you got sorted? What did you do in the end? Hope you are now reaction-free.

      • Debbie Robinson

        Hi Micki, no problem at all, yes I managed to get some of that soluble steroid and they worked a treat. Only took 2 x 5mg and it really seemed to reduced the symptoms. Seem to be okay now with some lingering effects but nothing major thanks πŸ™‚

      • Fab. Can you give us the name of them please for others when they need help – plus ingredients? I find they give me a really horrid mouth. Did you get that?

      • Debbie Robinson

        Yes they are the Prednisolone Soluble tablets 5mg. I took 2 but was told that I could take another 2 if nothing was happening but 2 were fine.

        Also contains Sodium Benzoate and saccharin sodium.

      • Ok, same as mine then. I do worry about the saccharin which could be from corn but not confirmed. Still, they do work so I doubt it. I think this because at the hospital I was given prednisolone tablets with maize starch and lactose in (despite asking them not to…)and they never did a thing to help. As soon as I used this soluble one, it worked within 20 minutes. You wouldn’t want to take them regularly, but are a useful emergency item if needed.

  21. Debbie Robinson

    Thanks πŸ™‚ Good idea!!

  22. Debbie Robinson

    Have another gluten story for you. My sister in law has just been diagnosed as coeliac in her 55th year. This was from a biopsy where they said that she had totally flattened villi and even sores and raised inflamation areas with overlapping skin! When she was pregnant with my nephew (31 years ago) she had a biopsy and they told her she was borderline coeliac and that she could carry on eating gluten in small amounts. Over the years she has suffered with depression, alopecia, gut issues, fatigue and all manner of other symptoms like you’d expect. So she has been damaging her gut by eating (by her own admission) a slice of bread a day for over 30 years and suffering the consequences. Even though I know that medicine wasn’t up to scratch back then for coeliac disease it makes me so mad. All her suffering could have been avoided. I guess that’s just the way it goes…progress.

    Needless to say I have pointed her to this blog and will be recommending that she does the BP!!!

    • OMG, poor sister in law. This is what is happening even now a lot with the misinformation about ‘you’re not bad enough yet to have to avoid gluten’. Beggars belief. I hope she feels well soon. Head in hands… In my case – and a lot of yours – it was a completely missing coeliac/gluten sensitivity diagnosis and us continuing to eat gluten in the belief that it was not the culprit that has caused the damage in the same way. Makes me so mad.

  23. Hi Micki
    More than once, I have had people send me to this woman http://celiacdisease.about.com/b/2011/04/26/do-all-grains-have-gluten-yes-but-not-that-kind.htm who seems to discredit grains such as rice affecting gluten-sensitives! What do you make of this and how do you argue back to people?? I think my intolerance to other grains is due to the gluten content – not just because I happen to be intolerant to those foodstuffs in themselves? Am I wrong?!

    • Hi Becky, interesting one. I need to read it through properly. I have my own ideas but actually I have asked Dr O at the GFS to give us an expert response and I’ll post that when/if I get one.

      • okey doke, cheers πŸ™‚ difficult because every time I think I’ve got things straight in my head, I get all confused again and become unsure of certian info! pfff…

      • Actually, you have to think ultimately does it really matter what it is in the grains that affects us. Most probably gluten but there is so much we don’t know – it could turn out to be other fractions, the lectins, a combination etc etc. The fact is that glutenins and other fractions have been found in grains like corn and that they have been found to affect people in a similar way to wheat. All you need to know is that grains don’t like you; it wouldn’t change treatment even if you did know, would it?! It’s a hotbed of controversy and research currently, an evolving area of medicine and actually quite exciting to watch even if I do wish I didn’t have it!

      • yeah, you’re quite right! So much is not yet understood, that we argue using only a fraction of the facts- the info we know about! Thank God we’ve got you on our side to understand more than we do anyway! It IS very interesting – I guess more so BECAUSE we suffer the effects :] doh.

  24. Debbie Robinson

    Hi all, over the weekend in my head I have come up with a few questions…as I’m typing this I feel like I have already forgotten them!

    1. Why do we have to limit carbonated water intake?
    2. Yep forgotten the rest…damn!!!

    • Ha, mind like a sieve like mine! Where does it say to limit carbonated water, Debbie? Can’t see where I’ve said that. Usually I say it is someone is bloating etc as why would you want to put more gas in a gassy place?!

      • Yes and it still hasn’t come back to me! Grrr…

        It was in the BP – oh that’s okay then, I dont really get bloated and quite like it so if there’s no major issue then I’ll carry on πŸ™‚

      • Where in the BP, Deb? Blowed if I can see it and nothing coming up on search. If I see it, I will remember the context of why I wrote that!

      • Debbie Robinson

        Sorry my fault it’s on the last page of the BP shopping list under ‘In moderation’.

      • Oh I see – yes, just the bloating issue as I recall.

  25. haha, well let us know when you remember the rest Debbie, lol!! No idea about carbonated water…

  26. Help! I have got the most severe ACTUAL flu. I am so so ill, it’s awful. Anyone got any advice? I am taking homeopathic remedy “Infludo” made by Weleda… I don’t know what else to do….I’m hoping it’s the flu itself making me feel so awful and not the medicine :/ But how can I know?!! It does have alcohol in it…and I have gt the most incredible migraine. What do you all do in case of flu? (just to assure you, I am not exaggerating, I have not just got a cold, I really have got full-blown flu, it’s like hell) Might go back to Boiron’s Oscillococcinum…it’s most offensive ingredient being sugar.

    • Oh no poor you Becky 😦 I’m afraid I have no idea and thank goodness up to now have not had to take anything for flu (touching wood a lot now). I am also crook and home suffering. Not sure what’s up but chest has flared up massively and also feeling pretty rubbish besides so reckon it could be a bug too or just another reaction…who knows? Sigh…

      I hope that someone has a suggestion for you and you start to feel better soon. Flu is wrotten!!!

      • Urgh, I know, I don’t think I’ve had the flu since I was little! I had Glandular Fever when I was 16 – I actually thought I was going to die it was so bad! This is the most awful I’ve felt since then! (in a germy kind of way! Have obv felt MUCH worse with gluten illness!) I am pretty convinced now that I’ve poisened myself with the medication – it must be corn-derived alcohol or something?! Havn’t the energy to look into it tbh…but I have got all the classic gluten poisening signs so I’m not taking anymore. My hubby’s picking up some oscillococcinum on his way back from work. Should’ve stuck to what I know! (hoping that’s ok – havn’t had it for such a long time… :/ ) Thanks Debbie. Am so sorry to hear you’re ill too 😦 grrrr. I hope your symptoms calm down soon. I think I am out of practice suffering migraines – used to just be a part of life before but I find it hard to deal with now. Then again, I didn’t have a squealing 2 year old before lol!! Haha!

      • 😦 Hope you feel brighter soon.

    • Oh, poor you, Becky, how nasty! As you know, there is not a lot you can do with flu other than get through it and see your doctor if you need to. Infludo contains ethanol which is probably going to be grain-based so likely the cause of your migraines. Don’t know the Oscillico but imagine it will contain lactose so watch out if you are dairy sensitive. My advice would be to get an anti-viral like oregano or olive leaf (use the TGF Supplements master list), increase your intake of coconut oil which is a natural antiviral and get yourself some TGF safe paracetamol if you can for symptoms – can you get Perdolan suppositories? That’s from Belgium so presume you can get it in France. Also, don’t forget the recent flu Vit D protocol I posted. Hope that helps.

      • Thanks Micki. Am out of Vit D would you believe?!! Can’t do coconut.. I do take Oreganol though. How much of that can be taken? You are right about the oscillo – contains lactose. I can’t tolerate dairy but don’t know if I’m actually lactose intolerant. Best to avoid it and just wait it out then I think! My headache already less intense since stopping the Infludo. It suddenly occured to me that Weleda are not french (they often use alcohol distilled from grape stems for medication here) so figured if it’s an english company it’s probably grain-based. Boo. Pesky kids, I blame them – I work with children now and have had two colds and the flu since I started!! GRRRR! Wow. Must go and lie-down… 😦 thanks again πŸ™‚

      • Yes, my sister is a teacher and she has had bug after bug this year, but then she ignores me about Vitamin D so what can you do?! What is it they say about treating family and friends?! Oreganol. You should go with what it says on the tub/the manufacturers’ advice. I did look in my Oregano book and it says to take the 2-6 drops (pref with oregano caps in addition) every hour until symptoms start to reside but that is a bit vague. I did find this protocol too which might help – it was written for swine flu from the looks of it and I’m not sure if it means the regular oil or the triple strength so I would check/lower it myself if you do it.

      • OK, thank you. My little one has now caught it, it’s like living hell in my house now! He’s only 2 and he’s a he (so suffering MORE, obviously – ‘boy flu’?!) poor little thing can’t blow his nose very well, so it’s making him sick 😦 AND has conjunctivitus I think πŸ˜₯ Can I give oreganol to such a young child? We’re taking him to the docs tonight (homeopathic) but wondered if yu have any suggestions for herbs that could also help (cheeky I know!) πŸ˜€

      • Ah, what a shame. Oreganol: they do Kid versions. Check on oreganol.com/contact them for dosage. Otherwise I normally say Sambucol for Kids is helpful and designed by a virologist. Goldenseal and Echinacea tinctures can also be useful but use child dosages.

      • Thank you for your advice…My baby went off to the docs with his daddy last night, had a temperature of 40 degrees, a small seizure in the docs office and was rushed to the emergency unit at the local hospital!! They don’t have a paediatrician so he was then taken off in an ambulance to the nearest ‘equiped’ hospital (an hour away) without ME!! I have never ever been away from him! Anyway, it was a long night for the them but he is back now and sound apart from being sleep deprived (exActly what you DON’T need when you have the flu, eh?!) They kept them waiting until gone midnight for a room! Anyway, after all that, our homeopathic doc didn’t get a chance to prescribe anything and the hosp sent them away with, guess what, yes, just paracetamol (and a shot of valium in case the convulsions happen again- and yes, the french ARE obsessed with bum-holes, that’s where it goes!) His dad’s gone to the chemist now though so we’ll ask for what you recommended and any homeopathic remedies to calm the symptoms a bit. Thanks again and thanks for the link about the vit D protocol for any future flu attacks! Hope I never get flu again!!!! Still feel like poo 😦

      • Blimey, Becky, that was scary for you all! Glad he is well now and hope you are feeling brighter.

      • Crikey mike! Sounds like a total nightmare but at least he’s back and hopefully will be on the mend soon. Not nice for any of you though 😦 get well soon!

  27. Anyone know if we may have trouble with Eugenol Benzyl Alcohol? I tried a tester pot of face oil and it seemed ok so I got the bigger bottle only to see that it had this in it. Any idea if it’s good/bad?

    • Eugenol usually comes from an essential oil like clove or cinnamon in a natural product but can be made synthetically. Benzyl alcohol again in a natural product can come from essential oils eg ylang ylang but can be synthetic. What is the brand/name and I’ll see if it has come up on my list! See, told you I was peering at latin names and then this query comes in to give me more to look at! More tutting (read the recent blog post Busy Judging to make sense of this comment…!)

      • How funny! Well this oil is made by a local lady in Southampton and she is a homeopath and says that the ingredients are all plant based oils. Incidentally tocopherol is also on the ingredients list along with a long list of latin names (!) so perhaps I should ask her where that was from. I’d love it to be TGF as the little tester I tried worked wonders with the fine lines! It’s an anti-aging face and neck oil. I shall take a photo of the ingredients and email to you. Might be a good one to add to the list if all okay?

      • Ok doke. Poised to peer at yet another list!

  28. Here I am lowering the tone with sex talk again! I had my coil removed today and am looking to replce it with condoms. Which ones are safe please? I see that Trojan unlubricated ones are corn free but are there any in the UK that we can use? Thanks πŸ™‚ Also I guess I’m going to start having periods again so what’s the advice there? I know that there have been some recent revelations!!

  29. In tampons and pads I mean…

  30. Your guess is as good as mine currently, Deb, I am just looking into this and am trialling some stuff – not the condoms, sadly! I have started to get emails back from some sanitary wear suppliers but I am not sure I believe what they are saying as it is at odds with my experience and what others say in forums re reactions etc. Watch this space. Sort of.

  31. Message from K today to share with you:
    I just came across your site! I’m an American living in the UK and have FINALLY discovered the truth about True Gluten Free diet after several years of declining health. I have had NO help in the UK and actually went to Houston to see Dr. Osborne. I have improved significantly since eating truer GF and starting on a supplementation program under Dr. o’s care.
    I am so encouraged to see that you are promoting The TRUTH for the people here in the UK!
    Good on You!

    How lovely!

  32. Debbie Robinson

    Hi all hope everyone is doing well. Could I have a reminder on the suggested treatment for a stinker of a cold! Would love to get rid as soon as possible. Is it the Vit D thing? I’ve done that twice in the last 6 months and wondered whether there was a limit to how often you should do it. Aside from that all is well, apart from the stresses of selling the house, a new job and getting married in 2 months……sigh πŸ™‚

    • Ah, stress will do that for you. Have you looked at ARG Zen from the TGF Supplement Master List? Might help. Colds are often an eliminatory event and help the body get rid of stuff so not all bad, if horrid to have. Vitamin D is only a temporary raising so you should be fine as long as there are a few weeks in between. Also, look at the oregano liquid/olive leaf type stuff in the list. Increase your probiotics and take well away from the herbals. Hope you feel better soon.

      • Debbie Robinson

        God tell me about it! Anything wrong with taking these zen supplements constantly for the next 2 months??? Will get some and also need to stock back up on my oregano oil as had run out of that. Back on the pro Bs too. Also going to get on those new batch multi vits. Thanks Micki πŸ™‚

  33. Nope, have a lot of people who take Zen quite regularly and medium term. I am sitting here staring at Dr O’s multi and wondering whether I should just go for it. Mouth and gut painful today anyway so might as well have a migraine as well!

    • Poor you Micki 😦 Hope you feel a bit better soon. You’re either very brave or totally nuts! I would never dare try a newy if already feeling crappy! I am having trouble keeping stocked up on all the basic supplements, all SO expensive! But keep meaning to ask you about Oxypro – you had told us it had changed it’s name to Oralplex – and Natural Disp told me they wouldn’t have any until April…but still cannot find it for the life of me – how is it listed? Often find it difficult to find stuff on their site lol! Thanks for any info πŸ™‚ Good luck with the wedding planning Debbie!!! How exciting!

      • Ha, I chickened out anyway in the end, FB, as had enough going on, as you say. Sometimes I get quite kamikaze about it! I know re supplements; they are to help you move forward and replace nutrients etc so take what you need. no-one says you have to do everything.

        Re OralPlex, I just put it into the search box at Natural Dispensary and it came up fine. I did Oral Plex with a space. With ND, as I always say: they have thousands of products and not everything is on the site. If you can’t find something, send your order in and then send them an email asking for them to add the other thing(s) on that you couldn’t find. Or, do what I do: I never order online, I just send an email and they call me for payment :). They really don’t mind that.

  34. Ok, thanks πŸ™‚ I checked literally a couple of days ago for Oral Plex with a space (and every other combo known to man!!) and it didn’t come up LOL! Typical! They probably got it in entretemps! Thanks though, at least I know it’s now in stock πŸ™‚ Glad you didn’t take the new vits!! πŸ™‚ x

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