To anyone suffering from Lupus or still waiting to be diagnosed. My truth about Aspartame.

This is my first post on this site. I am not a medical professional but simply a patient that has been suffering over the last 3 years from an array of symptoms that most of you will be able to empathise with.

My painful journey started in November 2013 (although looking back there were some minor symptoms in the build up to this point). I had long complained of problems with my sight and most of the time it was fuzzy/blurred with some loss of periphery vision if driving at night. Extra eye tests were completed but nothing found. I complained to my dentist of a permanent horrible taste in my mouth but there was no answer for this either. I was suffering from Plantar fasciitis for the second time in the same foot and again it was lasting into the two year period each time (a year more than they suggest). I had aching joints but thought maybe I just needed to ramp up my exercise routine. So we brought a lovely rescue dog into the family.

Around this time a dentist, in error, damaged a neighbouring tooth, and long story cut short after several attempts to save it had to be removed 10 days before Xmas. I ended up spending the run up to Xmas and the actual day itself continually having this cavity cleaned out and repacked due to developing dry socket. This episode was extremely painful but it brought all the other symptoms and worse to the fore as the open wound provided free access to what followed!

Over the next two year period I suffered the following;

Severe joint pain - walking a short distance seemed like a mountain to climb!

Severe foot pain

Numbness and tingling in legs and fingers

Complete brain fog - just not particularly aware of what was going on around me

Severe memory loss - eventually tested for Dementia

Losing my vision

Mood swings

Raging thirst - even though I had tested negative to any diabetes testing

Lack of taste in food due to the awful taste permanently in my mouth

Nasal congestion - so much so that I had a nasal spray prescribed.

Inability to cope with the smallest of things - which did not fare well with my busy life!

Depression - felt like I was dying slowly and no one could help me

Weight gain

Voracious appetite for sweet things - I just couldn't get enough hence weight gain above

Nausea

Tiredness and total fatigue

Dizziness

Hearing Loss

Being short of breath and unable to tolerate strong aromas such as someone lighting a fire outside or I couldn't be in a room where someone used deodorant spray.

At first I thought it was my age but decided that the menopause surely couldn't be as bad as this! I seriously thought I was losing my mind and continually Googled my symptoms as I'm sure many of you have done. I finally came across a post on Facebook about a woman who found out she was suffering from Aspartame poisoning (You have documented this article in an old post 4 years ago and it was interesting to me that by the end of the conversation the article was discounted and the conclusion reached that Aspartame was safe!!!) Although I found the article a bit dramatic it was indeed what saved my life.

I looked at everything I was eating/drinking as follows;

Breakfast - Because I felt so awful I was taking a fizzy vitamin C table in water - contains Aspartame!

Journey to work in car - due to bad taste in mouth chewed 2 pieces chewing gum - contains Aspartame

Arrived at work - Had a cup of tea with two sweeteners - contains Aspartame

Coffee Break - Cup of coffee with two sweeteners - contains Aspartame

Lunch - Diet yoghurt, cup of coffee with 2 sweeteners - contains Aspartame

Dinner - Home cooked meal washed down mainly with Robinsons diluting juice or occasionally with diet soda - both contain Aspartame

Evening - Cup of coffee with yes Aspartame sweeteners

Having tallied it up it was plain to see how easy it was to build up quite an intake of this potential poison! So from that Friday evening I stopped all intake of Aspartame and couldn't believe the difference by the Sunday - two days later! My memory returned, my fuzzy sight had gone and I felt like a spring lamb!

My health has continued to improve and I have only had one relapse. I was finding it extremely difficult whilst out walking the dog and just knew that I had taken aspartame in something. On returning home I checked what I had eaten and it was the two Gaviscon tablets I had taken that morning that were the culprits - they contain Aspartame!

As was previously mentioned - Aspartame is not an allergen - it is a chemical poison - and this is known by the company that makes it. Vast studies have been done on this product (the most studied chemical ever!) most of which were buried if it was going to give some credibility to it being removed from public consumption. The EU and British study was based on short term intake of aspartame through a breakfast bar. I and many other 'dieters' have been taking this product since it came into Britain in the eighties and it is only now that I have had a severe issue with it. It is the accumulative effect of this chemical which causes the problems and makes me fearful for the new sugar tax the government are imposing in April 2018. Nearly ALL of the soft drinks manufacturers are moving over to using Aspartame or other chemical sweeteners which also have harmful side effects.

The reason I'm posting this on here? As you can see from the following document Lupus is one of the diseases Aspartame can cause or emulate.

sweetpoison.com/aspartame-s...

I am NOT suggesting that everyone on here is affected by this but I wanted to highlight this issue as it WILL worsen the effects of Lupus and the only way to test this is to remove all trace of Aspartame products from your diet. Aspartame has the effect of homing in on the weakest part of your body and exacerbating all symptoms until you feel even worse. Please take note as I am hoping to escalate the attention paid to this dangerous chemical and bring it to the forefront so that everyone can make an informed choice of what they are putting into their bodies. Don't assume because it has been passed by the Food Standard agencies it is safe!

P.S - since finding out this information I have helped/found out about numerous people who have been suffering unknowingly!

Friend with sever tinnitus - drank diet soda and once she stopped it disappeared!

Rheumatoid Arthritis sufferer - drank diet soda and once removed off all medication including an injection that she received every 2 weeks at a cost of £330 each time!

Colleague with severe headaches - at one stage hospitalised - drank diet soda and headaches stopped once clean

Family member drank lots of diluting juice each day and accepted daily headaches as a way of life! Once juice removed - no headaches and now spreads the info to others!

Teenager who missed most of the first two years of high school due to severe stomach pains even though nothing was found medically. On a hair analysis was found to have Aspartame poisoning and has turned a new leaf with his health.

2 children family members - Very sporty but having breathing difficulties whilst training. Turns out it was the Aspartame in their sports drinks. Once removed no inhaler required!

Unfortunately a parent (for whom all of this fight is dedicated to) of mine was not so fortunate. Having taken the same sweetener and diet products since the introduction of this poison in the eighties suffered many of the effects in the document above - heart problems, severe breathing problems, severe sight disorder, severe joint issues, severe stomach problems with no diagnoses and only PRESCRIBED!!! Gaviscon which they ate by the box each week thinking it was helping but only made matters worse - sadly passed away a few months ago. By the time I found out the dangers of this stuff it was already too late and for that I am truly sorry............

[Barnclown]

I avoid ALL artificial sweeteners full stop. because i react to them in all sorts of unpleasant ways...but, likewise, I react badly to all sorts of other environmental stimuli. It is what it is 🤷‍♀️

[ukgospeldiva in reply to Barnclown]

I read the link and see clearly an increase in dementia linked to aspartame use. It causes perminant brain damage. Like barn owl, I try to ensure both Processed foods and sugar substitutes are not given house room. Far too many chemicals in the food chain and environment.

Hx

[Hidden]

I think anyone with autoimmunity should try to avoid all chemicals of this type where possible. However I have Sjogren's and a lot of the saliva stimulating products recommended to us are sugar free. Slowly I'm eliminating all these kind of products because of serious chemical sensitivity, but it's hard because having severe GERD and very dry mouth, products containing sugar aren't an option. And leaving these to progress untreated is just as bad if not far worse - oesophageal and oral cancer, lung problems, loss of teeth and other organ involvement can result if we don't address our symptoms.

I think the whole anti Aspartain thing has been discredited now anyhow and otherwise healthy people have a choice about ingesting chemicals such as Aspartain. As Barnclown so rightly suggests, it's a balancing act for most of us here 🤹‍♀️

[Barnclown in reply to Hidden]

I can understand...in fact 6 years ago due to oral dryness getting me to the point it was causing just too much trouble...I tried various products recommended to sjogrens patients...inc some with xylitol which seems to be considered by many to be amongst the most acceptable of artificial sweeteners....I was v disappointed when I simply couldn't tolerate xylitol either. You're right: this is something we each have to decide for ourselves! 🤷‍♀️🍀😘

[Hidden in reply to Barnclown]

I know. The thing is that most people I know would be shocked if they knew the kind of drugs I take everyday to try and prevent this disease from progressing to my organs or making my neuro symptoms any more severe. But in effort to compensate or redress the balance I try to take great care of everything else I put inside myself. I watch or hear accounts from friends going out drinking huge amounts of booze, feasting on cake with artificial colourings in the icing, saturated fats, sugary drinks. When they invite us or me to join them I just tell them that I have liver problems so I can't. But what I'm really thinking is that it's best I don't because I'll feel like a judgemental killjoy. And in truth I am a bit judgemental of those who glibly drink Diet Coke or binge drink and eat crap because, on my coctail of immunesuppresants, vasodilators, thyroid hormone replacement, stomach protectors and prescribed supplements, it's very hard not to be! Aspartame doesn't feature but xylitol does I'm 😳 to say! But I can't take even paracetamol now so I just think something has to give! X

[Barnclown in reply to Hidden]

EXACTLY 👏👏👏👏

The only friends who REALLY understand our individual decisions re both lifestyle choices & the risk:benefit of our prescription treatment plans are those having to live with similar collections of comorbidities....🤦‍♀️

This is why I envy you being able to tolerate xylitol! I do wish I could. Am just doing the best I can without it cause, for me, the benefit doesn't outweigh the risk

Meanwhile am gobbling down my shocking pink NFBA methylcellulose tabs 😆....what could be more synthetic & artificial...I am amazed at myself...but this is how much my lower GI function has deteriorated over a lifetime of these illnesses despite conscientious lifestyle management...but, hey, things could be worse 🤷‍♀️

It is what it is 🙋🏼🍀😘

[Hidden in reply to Barnclown]

Ditto for me with you tolerating Hydroxy!

However I'm not sure if I actually do tolerate xylitol really. I'm on this AIP diet and feeling terrible today and Pompholyx starting to return in fingertips etc yet again.

Now wondering if it was the Xylimelt I've just started using at night or the coconut yoghurt which turns out to have forbidden soya in it. Or maybe catch up from night out at the movies where I had a load of M&S sugar free sweeties, or the Salivex pastels which contain all manner of E additives. Or could this just be coincidence perhaps and I'm flaring?

We should really save our envy for those who can be cavalier enough to have fun drinking and eating whatever without even a second thought!? X

[Barnclown in reply to Hidden]

👍👍👍👍

👏👏👏👏

😆😆😆😆

😘😘😘😘

[ukgospeldiva]

So many of us have intolerances and allergies with our various auto immune disorders that I too back last September kicked out everything else that contains cane sugar. I had this strange epiphany. After I noticed how many places offer just cake like loca plantl nurseries, super market café? It was truly shocking. Is that ALL they could muster when you have an entire food store at your disposal,?

[HRW2017 in reply to ukgospeldiva]

Me too!!! After watching 'That Sugar Film' I gave the white stuff up & have made everyone I know watch the film. I feel so much better for it, although the lupus symptoms stayed the same. ☹️️

[HRW2017 in reply to HRW2017]

P.S. That doesn't mean I've switched to artificial sweeteners!!! Wouldn't touch them with a barge poll.

[Treetop33]

Yes definitely worth looking at environmental issues when you have autoimmune problems - some good stuff out there on mould, chemicals, food etc etc. My understanding is that people have different triggers. I haven't found mine yet, but having a good whole food low carb and gluten free diet (not least because I've just started taking Pred and it might help with the weight gain) all helps.

I've read a lot of the alternative treatments for Lupus and autoimmune stuff on some reputable sites, and have been trying different things out for years, including the turmeric thing. It may have helped a little, but I'm still in pain. Sometimes I got a bounce from trying something new or eliminating something, but then it returned. Finally I got diagnosed. But what worries me is that these sites are anti-medication, and while that might be good for some things, sometimes you need the medication, right, along with other therapies?

But very glad to hear JGAV that your elimination programme has helped. Keep well.

[farmerfeste]

Hi jag when I started methotrexate the advice sheet that came with it advised to have antibiotics before tooth surgery in fact any surgery so having a appointment for a tooth pull I asked one off the gas about antibiotics he said they had changed thier thinking on it so no I didn't need anything . So tooth came out on January 31st a Friday followed all dentists advice

Got infection every where shut till the Tuesday e&a gave me some antibiotics witch didn't work got the dentist on the wedensday morning he cleaned it all out and dressed it and sent me down to gp saw my own docter who called gp who I had seen in and asked him what to do next it took to differant antibiotics two weeks to sort it .

On the aspertine one in a cup off tea makes me vomit within the hour I had patch testing

Witch found I had a intolerance to a chemical called carba Mix witch is found in food colouring flavouring and in some soaps and shampoos fiber gloves condoms elastoplas

Etc

Take care folks

[Lupiknits]

I think it's very true we all have intolerances. I've always had to be super-careful with any skin creams and shampoos. Blue cheese is a big no no. As for aspartame, I see the NHS has discredited the theory, but I believe each to their own, and to be careful about how your own body reacts to anything. It must be possible to ingest a great deal if you use it to sweeten tea and coffee and drink a lot of pop.

I shudder to think of the loads of saccarine my parents took after become used to it from wartime rationing.

[Elfie1]

Hi you are quite right about Aspartame, I would never touch that stuff it doesn't belong in you body and. neither do any of the other artificial sweeteners ,your body doesn't know what to do with it.If you need sweet stuff you are better off with honey or agave syrup. I don't eat a y chewing gum or mints except polo mints which contain sugar.The food companies only want to sell their wares and make money,they don't give a hoot about our health .As for the Lupus connection i can't say,but I know from experience that this stuff gives me headaches and I read an American article about Braintumours and Aspartame a long time ago . Hope this helps ,all the best Elfie

[MrsMouseSJ]

I have long avoided processed foods and chemicals, as far as possible, but - like you - was taking a vit C dissolvable tablet. I started to feel more and more unwell and had dreadful palpitations. I bothered to look at what else might be in the tablet. Yes, you've guessed! Stopped taking it and but a few days later the symptoms had also stopped, and didn't come back. Now have to ensure that any meds I take don't contain it (the bowel clearance prep used by hospitals round here pre colonscopy does, so I had to request an alternative; the admin person I dealt with seemed unsurprised when I said it was because I can't tolerate aspartame and told me that quite a few people say that).

[Cas70]

Thanks for this - well worth giving it up.