Iron Supplements for those very sensitive to gluten

Hi, I'm being prescribed iron supplement (ferrous sulphate). GP assures me it is gluten free but GPs and Pharmacists don't understand gluten in ingredients. The pharmacy is not answering their phone when I call to find out the brands they have so I can do my own check. Any pharmacy prescribed brands I see online contain glucose and sucrose, so not touching anything like that with a barge pole. For any of the 'very sensitive to gluten' folk on here who have taken iron supplements - what did you opt for or would you recommend?

[Sapphire10]

Hi Benjamin. Years before I was diagnosed with CD I was found to be very anaemic and put on 60mg iron on prescription - I think they were Ferrous Sulphate 200. I don't know if they were GF. I periodically take iron now (I recognise when I need to from how I feel). Although it is a lower dose (only lower doses allowed over the counter) I've been using Solgar Gentle Iron 20 mg which state free from gluten, wheat and other things in small print on the label. I also need a veggie iron supplement so it complicates things a bit. These are both and I've not had any reaction to them gluten wise. They are a bit dearer being both gf and veggie. Available on Amazon and Holland & Barrett.

[Hidden in reply to Sapphire10]

Hi Sapphire10, brilliant, thank you for that. I had wondered if Solgar (who I trust) did a good iron option, so thank you for that.

[Narwhal10]

Hi Benjamin123,

Sorry to hear about low iron. (I hope you asked for blood results printed out). Of course GP has no idea, the pharmacists I have dealt with have slightly surprised me.

I’m with Sapphire10, Solgar gently iron (iron bisglycinate) 25 mg Free of gluten, wheat, dairy, soy, yeast, sodium, artificial flavour, sweetener, preservatives, colour and sugar.

Hope you are ok apart from IDA. (Iron deficiency anaemia - sorry for abbreviation).

[Hidden in reply to Narwhal10]

Thank you Narwhal10. That's good you also recommend Solgar. Ye, fine generally and all other vitamin levels ok. I had wondered about asking for a copy of my results, so you have prompted me. Not sure why the levels are low, and I am suspcious that the so-called gluten free foods that have been catching me out might have something to do with it. I've been recommended to supplement for 3 months and get retested. I've not taken iron tablets before so interesting to see how they work out.

[Narwhal10 in reply to Hidden]

Yes, I agree with getting to root cause. 🤔

[Maisie48]

Hi Benjamin123 - my daughter (who was diagnosed with Coeliac disease this summer) takes Floradix Floravital Liquid Iron which is a herbal tonic. I used to take Floradix for iron during my pregnancies and found it had no side effects.

If you search Floradix online you will find their range of products. Hope this helps Benjami 123. 😊

[Hidden in reply to Maisie48]

Excellent. Thank you.

[Hil101 in reply to Hidden]

Hi, I am very sensitive to gluten (coeliac) and get quite a bad reaction to Floradix Floravital. I find Spa Tone sachets very effective. They don’t have sky high levels of iron but it seems to be very bioavailable and my hair starts sprouting at the roots within a week or so of restarting it if I haven’t taken it for a while. Hair thinning is one of my most obvious symptoms. You can buy Spa Tone from supermarkets as well as chemists.

[bookish]

I use Spatone sachets, no problems. Cheers

[Hidden in reply to bookish]

Great. Thank you. Are they very mild though?

[bookish in reply to Hidden]

Yes they are, but it is all I can tolerate, so I take 2 or even 3, every other day when other reactions permit. The only other iron Micki Rose suggests for those grain free is this one amritanutrition.co.uk/produ..., but you'd need her practitioner code to try it. I have no experience of it. (PM me if you want the code).

[CATRYNA49]

I have always opted for Ferris Fumerate which is an organic iron, or a vegetable based iron.

[Hidden in reply to CATRYNA49]

Great, thank you. The only option of fumerate my local pharmacy has glucose and sucrose from unknown origin. This seems to be standard. I spoke to the pharmacist who has coeliac. She was only stocking this brand and agreed that medicines are a problem for trace gluten. Yet, no alternative options stocked! It's just a running joke.

[Hidden in reply to CATRYNA49]

Sorry, what brand do you use?

[CATRYNA49]

You can always try online shopping for Ferris Fumerate.

[nellie237]

Hi Benjamin123,

I'm sorry I can't give you any recommendations for Iron, but in your sensitive shoes I think I'd opt for the Solgar, although it will take a lot longer than the ferrous sulphate.

I would strongly second Narwhal10 and recommend you to get access to your results though.

[Hidden in reply to nellie237]

Thank you. Yes, I've requested my results and now have them. Does not change the dilemma of what iron brand to use. I've raised complaint with GP and pharmacy for only having one brand available and no info on it's gluten safety/ingredients sources. The pharmacist herself has coeliac, but still made no effort to look into alternative options. She promised a call back twice, but never did. I've raised the issue with the pharmacy head office on the poor quality of information for anyone with coeliac. GPs and pharmacists are a danger to everyone with coeliac. Time and time again it's just a wall of ignorance and couldnt give a damn attitude.

[Narwhal10 in reply to Hidden]

I totally agree - it’s like banging your head against a brick wall. (Why do you not know these things ?

I just report, report, report to the Yellow Card scheme.

[Hidden in reply to Narwhal10]

Never thought of the Yellow Card system - good recommendation!

[nellie237]

I know from my research last year that NICE recommend Ferrous Sulphate. I read a lot of stuff about Ferrous Fumarate being better tolerated, but in your case that's probably a big No, No, because it probably contains even more excipients.

I have a horrible feeling that you won't be able to find what you're looking for on the NHS because of the 20ppm, and if it is available it probably needs a consultant to prescribe it because it will likely be hideously expensive, and might be cheaper to give you a transfusion.

Please let us know how you get on, and good luck.

[Hidden in reply to nellie237]

Thanks nellie237. Luckily not at stage where transfusion is required but levels are slowly slipping. I got a copy of blood test from 18 months ago also. Shows iron is in the low range then but some idiot has marked it as 'this is normal' and then I was told my blood tests were normal - that's when I was traipsing forward and back to gastro. If you have low iron and referrals to gastro, that is NOT normal. I also have ongoing GI pain without gastric symptoms. GI pain and worsening iron levels is a big red flag, but of course the ersthwhile GP did not read any of my previous medical records (2 years of pointless gastro appointments and gaslighting letters from him to my GP), and prescribes a crap quality iron option that may not be safe. There are days when I believe if the NHS was to shut down and a patient-led functional medicine health system put in place, the health of the nation would improve dramatically. In the years I have been navigating this issue I have been bowled over time and again by the sheer lack of knowledge, sheer lack of joining of dots and the basic inability to read the ingredients label on items being prescribed. It's downright dangerous. Yes, as always, my own expense and research will have to fill the gap of NHS provision. Thank you again.

[Researchfan]

Hi Benjamin123.Really hope you manage to get sorted. It’s no fun being low on iron.

I ditto the recommendation for solgar gentle iron tablets. I also personally would recommend Betteryou brand daily oral iron spray. It’s easier than tablets and doesn’t rely on digestive power for absorption the same. Cambridge physician backed and gluten and sucrose free on label.

X

[Researchfan in reply to Researchfan]

Cardiff uni backed for absorption not Cambridge- knew began with ‘C’.

[Hidden in reply to Researchfan]

Thank you Researchfan - that's good recommendation. I have taken a liquid iron supplement in that past and it made my teeth quite stained, and read that this is the downside of liquid iron supplements. Does the spray stain?

[Researchfan in reply to Hidden]

Hi Benjamin123.Good question. Not that noticed. It says spray on inside cheek or under tongue. I’m conscious of staining too, the liquid iron stained my teeth too. And the spa tone one discoloured teeth too so put off taking that though does work. I’m a fan of the sprays. Though leaves a bit of an after taste.

[Hidden in reply to Researchfan]

Ok, thank you. That's good to know.

[Tabbyme]

Hi Benjamin. I take the ones from boots and I haven't had any problems. Last time I had my bloods done they told me in passing but months later that my iron was a bit low, they didn't see it low enough for concern but it explained why my hair had started falling out again. I'm asking for a copy of my blood results next time!! I hope this helps though, I have to take quite a few supplements trying to battle chronic fatigue and they can be a bit of a nightmare. Natures Best are also quite good as they have a help line. Good luck and all the best!!!

[Hidden in reply to Tabbyme]

Thank you for that recommendation - is that Boot's own branded iron?

Similar to you, I had blood test almost 2 years ago as looked pale and lacking oomph. They said all was normal. I got copy of those tests a couple of months ago and it's in the low range but some a'hole has taken the time to write beside it, with a big asterix, that it was 'normal'. Not normal, and now even worse for energy. Similarly I'm experiencing hair loss at this point. I firmly believe GPs are dangerous. I honestly mean that. It's unclear how people who have been throught university can be so entirely stupid.

I've learned now, the hard way, to always get a copy of all results. I've also had a GP receptionist tell me over the phone that my joints in my hand were showing as normal from an xray. Not normal at all - osteoarthritis damage.

I genuinely hate the medical profession at this stage. Nothing more than frontline workers for pharmaceutical companies and clueless of health/diet. Drug pushers on street corners have better integrity.

[Tabbyme]

You sound like you are going through it!! I'm under Sheffield at the moment and that is the top in Coeliac Disease so I'm hoping they can help but due to covid the appointment I am waiting for has not happened yet. I have joint pain a lot but been told they are fine but my dexa scan showed osteoporosis/pena depending who reads it. I'm borderline osteoporosis. I just read up on vitamins and then try it. If you have problems with hair take biotin with the iron. B1 for energy is good too. That stopped me completely crashing!!! 😊 pm me if you want any more info. Take care!!!

[Hidden in reply to Tabbyme]

Excellent. Thank you. I think the only way I am going to get/stay healthy is avoid all processed foods with a GF claim. That's pretty poor if you have been left with bad bone density. I hope you can turn that around for yourself. I think NHS is poor for health generally - it does not focus on what can be done to improve things, and just manages people into worse health. I've had a swizz at your profile and it looks like you've been through mills as well. In terms of coeliac - did you have tests that showed negative, and that led to no diagnosis for a longtime, or did no one test you for coeliac for years? I'm always curious as to how people can be made to suffer for so long without anyone figuring out it's bloody coeliac!

[Tabbyme in reply to Hidden]

I didn't get any test for Coeliac Disease until the one in 2018. I had never even heard of it!!!! I wish I had !! I think I may have had it when I was young. I know it sounds strange but I have actually spoken to someone who says she was diagnosed as a child but has grown out of it!!!! I tried to warn her that she won't have but that fell on deaf ears but it made me think of all the trouble health wise I had as a child?!?! Have I always had it???!!!???

[Hidden in reply to Tabbyme]

For goodness sake, it's just crazy that such a common disease goes so undiagnosed. It really does make me angry to continually hear these stories. Something is very very wrong in this country (assuming you're UK?) when this is the sh*t standard of healthcare we have that runs people to deaths door before people have to figure out themselves what's wrong. It's just basic criminal levels of medical neglect. As to whether you have always had it, this is what I have wondered as well. From what I've read it seems it can be lifelong from childhood, or can be something that triggers any any point of your life as a result of environmental factors or factors unknown. I've read that a really bad tummy bug can kick it off, or a stressful event. I don't think you can grow out of it once you have it, but it would be good if you could.

[Tabbyme]

Yes I'm UK 😊. I have to admit I was just relieved to know. My Doctor did say he can't understand how they missed it, but never mind. I just need to get rid of the chronic fatigue now. When I was a kid I had bad asthma and was always having milk of magnesium shoved down my neck for my poorly tummy lol. I tasted blood if I tried to run any distance and often had pains in my bottom. I think some doctors are becoming better aware of Coeliac Disease though thank goodness. I think it's the people that don't have typical symptoms that are getting missed. My gums have improved no end since I went gluten free and I've had major problems with them since I was about 17 yet my dentist still doesn't believe me when I say that it was the gluten. I was always told to look after my teeth better even though I was 😢. The amount of times I've nearly just had them all ripped out 😯😂. I suppose we hope our doctors know everything but that isn't possible, I know they do try their best even though they missed it a lot, but at least they found it eventually! Thank goodness. I do think this site is pretty helpful too 😊.

[Hidden in reply to Tabbyme]

Just such a shame it took so long to get there with diagnosis/figuring it out. I'm on the opinion gluten should be banned! I've read everyone has a reaction of inflammation to it, regardless of whether they have coeliac or not. Evil stuff.

[Tabbyme in reply to Hidden]

Do not believe that. It is fine for people without Coeliac Disease. They have done tests which do show that gluten is safe for normal folk. Don't get into the Coeliac scare mongering crew 😢. We are just a little unlucky, I'm sure once it is looked into further they will find answers and a cure. It is like chronic fatigue syndrome/ME. Now that there is long covid which is very much linked to CFS,ME, Fibromyalgia and POTS, they will soon have a cure or a drug that will help them. I'm afraid we'll just have to live with our ailment for now. If you are a meat eater I would say more good steak and mince plus a portion of liver once a week. This will really help your iron intake and natural intake is so much better than supplements.

[Hidden in reply to Tabbyme]

I'm happy with being gluten free if I could stay gluten free. I'm not sure I would take a drug/pharma product. It's an autoimmune and no autoimmune has a cure, so it's treating symptoms in all cases. I've read that coeliac is a good autoimmune to study for a cure as it can be 'switched on and switched off' by dietary mechanism so provides potential for study that other autoimmunes don't, and may help in the longterm with cures for other autoimmunes. In reality, if it's a genetic qirk, then gene therapy may be the only option. For me I just would wish in the meantime of chasign 'cures' they would just look at the fundamentals of safe foods and safe catering standards.

[Tabbyme in reply to Hidden]

Hi Benjamin. I was wondering how long you have been gluten free for? When were you diagnosed? I think I said previously my diagnosis was May 2018.

[Hidden in reply to Tabbyme]

Hi,3 years 'properly' gluten free, and about 3 prior to that of 'deluded' gluten free where I believed my diet was from from gluten. Never properly diagnosed as negative blood test and no one offered endoscopy. I was low in iron at the beginning and took my own supplements (Ferritin), and seemed to resolve.

[Tabbyme in reply to Hidden]

Do you still use dairy products? I know that often lactose intolerance can give some of these symptoms too as my friend has that and suffered for a long time before she was diagnosed.

[Hidden in reply to Tabbyme]

No, no dairy. I'm allergic to it rather than intolerant.

[Tabbyme]

That is harsh. I have to admit I was very relieved when I can still have dairy. I drink a lot of milk. Probably lucky I do too or I might have snapped!! As in my bones. Years ago I use to say 'I'll never get osteoporosis with the milk I drink,' when people would moan at me for drinking so much milk I would just tell them it's good for me! As it happens it's a good job I did or my osteoporosis would have been much worse (oh the joys of this disease). I know it would be very difficult, but wouldn't it be better to have an endoscopy? If you had the diagnosis you could get more help and also make sure nothing else is going on to cause you issues.