Hi. Throwing another question out to the gluten-free community:
Innocent Drinks. Has anyone had bad experiences with their fruity spring water drinks (the fizzy ones)?
I'm checking their website and zero info on any allergens information. Random Google search brings nothing back. More searching shows one of their smoothies includes wheatgrass and their stating they do not recommend that for coeliac. They also do an oat milk drink but fail to indicate on that if the oats are GF so guessing they are not.
Have emailed them to find out the state of play for cross-contamination, but curious to know what other's experiences may have been with their products.
I haven’t tried these drinks, but I have found that my insides can’t cope with much fruit juice. I’m assuming it’s a fructose overload. I’m ok with eating fruit.
Looking at the ingredients, these drinks have got a lot of sugar from fruit in them. Perhaps too much for a damaged gut?
It’ll be interesting to see what reply you may get from them.
Thanks Penel. Yes, maybe it's the fructose. However I don't get digestive symptoms other than a pain - it's mainly neurological and joint inflammation which is very specifically gluten.
Possibly. Sugar is linked to inflammation generally. The response though is immediate and effects nerves (neuropathy) tingling, then pain in GI tract and joint inflammation. It's certainly a very definite immune response, and is, for all intents and purposes a ceoliac response response. I've only ever had this with gluten, but recently told by a dietician to also consider lectins. I've drank sugary drinks of this nature (the spring water with fruit juice) but with no reaction. This is the first time I've specifically had a reaction to a fizzy drink and this is the first time I've drank this particular drink. I'm going to my GP tomorrow to demand (yes, demand!!!) immediate referral to a Gastro doc as lost lot of weight, no energy and now my hair starting to fall out - exactly how I was when I first realised I needed to go gluten free. I keep saying it, but do trip up, I think the answer is just to avoid anything that has been anywhere near a production line or factory as cross-cont is underestimated and manufacturers badly informed/too sketchy in their reponses. Ba humbug!
Good luck with your demand, Mise. I do hope you can get your health problems sorted out soon.
As for foods to avoid... yep, sounds about right I’m afraid. It seems very common to have to go right back to basics for many people, especially when first diagnosed.
You could have a look at something like the Autoimmune Protocol diet as a possible way minimise problems.
Actually just had a quick scan on this. There doesn't seem to be anything left really after all foods removed. Also refers to gluten cross-reactive foods which are just the standard gluten grains (rye, barley). Seems ok, but have you tried this diet/know anyone who has? Where I'm struggling to get onboard with the eliminating of all dodgey foods is that there is literally nothing left other than animal products (meat) and green veg. Just seems very dicey if you're already underweight.
Bit of a worry if you're underweight. It would be a good idea to wait until you’ve seen a specialist and hopefully worked out exactly what’s wrong with you. Your problems could be the symptoms of various conditions.
AIP does include things like sweet potato, carrots, parsnips and other root veg, so it’s not a low carb diet. Some advice from a professional would be a good idea.
I only used it as advisory as I’d already worked out that I was ok with eggs and low lactose dairy. I did a fairly quick reintroduction of nightshade plants, in small quantities, but had to avoid tomatoes for longer. Still can’t eat any legumes.
I think that Cooper27 has followed the diet, due to Hashimoto's.
The underweight thing is consistent and has been for number of years - since my late 20's when issues started to arise. Have never been taken seriously by anyone. Recently had NHS health check (the standard one you have at 45) and the nurse told me I needed to be heavier. Told her I couldn't put on weight as food issues reacting/damage, and she just totally ignored what I was saying and went back to looking at chart to tell me what weight I should be. She gave me a weight which sounded well-dodgey. Went home and checked it, and she had basically given me a weight which was in the obese category for my height. Absolutely hopeless!!
Issue compounded by fact I genuinely have very small range of foods now. There is conflict between sources of info also for the immune diet/lectins as things that are ok on one, are not on others. The dietician I'm going to says rice and eggs fine. Every single website including the one you gave is entirely against eggs and rice. There little is nothing beyond basic fish/animal protein and greens.
I've had GP refer to to Gastroenterologist but think waiting list long. Also have referral to NHS dietician.
I'm entirely lacking the energy levels to do much and fed up being so skinny. Just seems your left to rot and die with NHS/experts and floundering with mixed information via various websites.
• in reply to
Additonally had update from Innocent stating their drinks ok for anyone avoiding gluten, apart from the Oat milk. Pointed out their info is crap as other drinks produced on same production line, nothing is tested for cross contamination, and they also use wheat grass in same facility. Is it any wonder people get ill when the big money making companies are so entirely clueless.
They should be aware of cross contamination and clean down between variants accordingly, but if they are not making a GF claim, they will not test for gluten residue in the production plant, because they don't have to. Annoying I know.
Thank you. The info they came back with was a hodge podge of nonsense. Question it again, and they came back with different information. Their customer care are clueless. A more worrying aspect is they process nuts in the facility for nut milk but do not declare that risk either. No allergen info anywhere on their website. Massively suprised how poor they are for a company that has been around for a few years. Playing it safe and avoiding them.....
Sorry to hear that this has been going on for so long.
The NHS can be great when you’ve got an obvious problem but sometimes their response is woefully lacking. A fairly common experience of people on here is to be told they’ve got depression and that there’s nothing physically wrong.
I’m assuming that you’ve had your thyroid function tested? Can’t remember if you’ve written about it elsewhere.
If you feel confident in your dietician, it might be a good idea to stick with what they’re saying and ignore all the conflicting advice out there.
Hopefully the gastro will be able to give you an explanation /diagnosis. Hope the wait isn’t too long. Fingers crossed that the NHS dietician will be good one.
Thanks Penel. I've been told waiting list for gastro can be long but going to try to dial it up. Just concerned that ongoing damage will make the cross over to worse conditions so going to just keep making a nuisance of myself.
I've had my thyroid testing on and off over the years. Last time was last year and it showed ok. A doctor did tell me once that my thyroid seemed swollen and did test, but it was fine.
I'm not massively confident about NHS Dietician as I'm not entirely sure how good their knowledge/ability to advise beyond gluten will be. Without a diagnosis of what's happening, it's simply floundering in the dark. Hopefully Gastro will be helpful.
Thank you again, and sorry for being such a grumping gremlin!!
It was a long wait for an NHS gastro appointment in my area, but I was offered a choice of both NHS and private. The private hospital had the shortest waiting list so I opted for this and it was funded by NHS. My son had a similar experience. He is in South Yorkshire, I am in West Yorkshire. Might be worth asking if this is an option
My son was about a couple of weeks only as he had a bleed. All OK btw. I waited about 5 weeks as against 39 for NHS appt. Also, the gastroenterologist was really good, not hassled or rushed, and I got a nice lunch afterwards before they allowed me home. And I can go back and see him if I feel the need.
I went to the Yorkshire clinic but as an NHS patient. They were really lovely but I had a long wait to be diagnosed after the biopsy. Interesting to read about nerve and joint pain relating to sugar too. I’m type 1 diabetic and it all seems to relate to that as well. Shame my gp fobbed all that off as psychological - I actually went for acupuncture I was so desperate, and he looked at my neurological symptoms and pain and said my stomach was inflamed...... The rest is history but it’s taken 3 years to convince anyone. I am now officially coeliac, which was a shock admittedly and my stomach is now sensitive to lots of things including tomatoes? This site is invaluable 😊👍
I went to the Nuffield in Leeds as an NHS patient. Quite a pleasant experience strangely. It was about 3 weeks till I went back for my diagnosis and course of tablets.
No, microscopic colitis. This was treated with an 8 week course of steroids which gave me significant improvement. I remain much improved, although I will probably never lose it completely.
It's interesting how Eastern approaches to health can pinpoint something in terms of relating pain and discomfort in one part of the body to another part of the body. Here in UK if you have nerve pain in your hands they only treat it as an issue relating to your hands and dismiss all your other symptoms/questions. It's a very arrogant and patronising approach to healthcare. Similar to you I had gone for accupuncture years ago and was indicated that all the random health symptoms down to my digestion. Prior to that I was having an appointment with a consultant about the pain in my hands and I asked could there also be a link with my digestive issues and he emphatically stated 'no'. I have never trusted anything a consultant has said since then and tend to believe the opposite of what they tell me! Similar to you I also can't tolerate tomatoes. Also became allergic to dairy products. The dietician I'm going to talks about lectins being an issue. Lectins are another protein that lots of people have issue with. Dairy and tomatoes are high in those. I think the coeliac causes damage and that makes the gut permeable and vulnerable to the other dodgey proteins which it would normally be ok with. It's good you eventually got diagnosis but shame it was the faffing journey that seems so common.
It is annoying that in UK they only deal with the presenting symptom without considering the wider picture. The average GP appt of 10 minutes doesn't help this.
On my most recent appointment I asked ahead for a long appointment which is 20 minutes. I only realised recently that such an options was available. 10 minutes is just too little, you feel rushed and like your in the way.
It usually feels like they can't wait to move you on. One of the GPs at my surgery diagnoses you as you walk in the room, before you have sat down and discussed anything! I won't see him any more. When I first went with my gut issues, he said 'if something upsets your tummy, just don't eat it'. Being patronised and infantalised does not sit well with me.
You have identical symptoms to me. You’re right about everything - having diabetes, epilepsy and an under active thyroid means they are treated independently without looking at the bigger picture. I’d highly recommend a good acupuncture doctor who takes a holistic approach. It’s something I’d never considered as I’d always assumed the gp’s knew best, but have since been frustrated. He has said Chinese medicine has been around for a lot longer than Western ‘cures’ and even though I can’t ditch my traditional medication, I can go to him for the side effects 😊 Thank you
I’m not bothered about the needles, they’re tiny compared to my insulin ones! Yes I did and it came back with high levels of the antibody, then I had a biopsy. Had the acupuncture doctor not said to ask my gp for a blood test, I’d be in the dark and assumed I had something like fibromyalgia. My blood test came back with low bone density but the gp ignored that and said as I am 50 it was expected? It was actually my diabetic consultant who read the results properly and said the blood test was conclusive - but it was standard procedure to have a biopsy. Have you had both?
Blood test apparently negative and no offer of biopsy. Recurring issues at moment so on waiting list for gastro appointment.
That's astounding on the bone density. You just want to line all these indviduals up and through one big massive medical negligence legal case at them. I'm not entirely sure why we are so to tolerate such bad diagnosis in addition to sexism/ageism and whatever else nonsense they have to through at people. Pretty grim.
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