Stop the madness! There is no end to diets!!! Claimin... - NRAS

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Stop the madness! There is no end to diets!!! Claiming to cure RD

Damaged profile image
63 Replies

If becoming vegan cures RD then why do vegans develop disease? Which diet to choose ? paleo, Vegan, Atkins, Paddison ? All so confusing.

They so casually say just stop gluten, dairy, eggs? ... like any of that is simple. Dairy is in everything. If survival means living on bird seed I think I would rather pass.

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Damaged
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63 Replies
sylvi profile image
sylvi

Me too darling we need food to keep our bodies working and these silly fad diets don't help.xxx

Simba1992 profile image
Simba1992

Trying out diets without the understanding what these diets try to accomplish and correct, without the knowledge what your general health and function of your body is it's just as dumb as eating meds just hoping they will change your life. RA is not just symptoms you put a muffler on if you want to try diets I really think you need to educate yourself thoroughly and hopefully get help from a specialist representing dietary modifications. Follow up and have a plan.

Damaged profile image
Damaged in reply to Simba1992

I am currently following the 'interpreting your genetics' forum. So clearly certain things they all agree are 'bad for you'. Gluten, dairy, eggs ! I'm still unclear why eggs are bad !

I am leaning towards eating for my genetics. Nutrigenomics is what I will follow at least until I feel I confident about another approach. I have not responded well to any drug so definitely agree with you there but they do help millions.

Simba1992 profile image
Simba1992 in reply to Damaged

This sounds interesting. So how do you interpret your genetics and how does it help you to pick the right foods?

Yes it's funny with eggs I think with egg allergies many other factors play in like what the chicken has been eating, antibiotics, added color and so on(?) As for dairy I have begun to wonder about that too. At first I left all dairy out then I reintroduced lactose free, next step goat cheese and so on, since I understood the great benefits of dairy and also that often in RA our metabolism is not working as it should which in turn makes it hard to digest milk. So now after I have worked with my metabolic rate getting it to function more effectively now I am trying dairy again carefully.

Damaged profile image
Damaged in reply to Simba1992

I have a very very long list of allergies so I had genetic screening done early. I initially wanted the pharmacogenetics (how my body will respond to drugs). But Nutrigenomics tells you exactly how your body deals with food. I have a genetic mutation MTHFR which impairs the folate pathways in my body so I need a strum form of folate vs folic acid. My body will not absorb folate from food.

Simba1992 profile image
Simba1992 in reply to Damaged

So are you eliminating these foods? Have you tried to fix your gut with any kind of diet? Sorry if I'm asking something you have already posted about.

Damaged profile image
Damaged in reply to Simba1992

Yes, I have stopped eating dairy, gluten, red meat( this I will reconsider). I also eliminated all food sensitivities. I knew I was sensitive to tomatoes, dairy, carrots, corn. No noticeable difference but it has not been 21 days yet. I am seeing a specialist in Oct. he does nutrigenomic diet based on genotype

Simba1992 profile image
Simba1992 in reply to Damaged

Do you live in the States or Canada? I wonder if they have this test in the UK? Quite sure France won't have it. Interesting to see how it goes, I hope you keep us posted:)

Damaged profile image
Damaged in reply to Simba1992

Canada but 23and me is online service that can be accessed from here but there are companies everywhere these days. GWAS was created by UK. Clearly ahead of the game.

AbbeyRoad profile image
AbbeyRoad in reply to Damaged

I, too, have the MTHFR mutation. Liquid folate is wonderful. :)

BlightyFiveStar profile image
BlightyFiveStar in reply to Damaged

Hi there and thanks for posting about this. I agree that to understand more about the specifics which affect each of us can only be a helpful thing. I am in the UK and have no idea how one would access such tests. Do they do the analysis on blood, or what? Who interprets the results with you? I would love to understand some more. Are there some sites that explain things for beginners like me?! And is it evidence based? On research rather than anecdotal I mean. Thanks for your help. Will read your replies with interest 😊

AbbeyRoad profile image
AbbeyRoad in reply to BlightyFiveStar

Hi BlightyFiveStar - I'm in the US and have access to Functional Medical Doctors. (Also called Naturopaths (ND) or Holistic providers.) They are interested in finding the root cause of disease, whereas my Rheumatologist treats symptoms. Thru my ND, I've had tests to measure gut permeability and candida, blood tests to check food intolerances (Alletess Medical Lab, IgG ELISA test), and genetic testing (23andme). My insurance covers most of the costs of this testing. I think the best treatment for people with autoimmune diseases is a combination of Rheumatologists and Naturopathic doctors.

Damaged profile image
Damaged in reply to Simba1992

Nutrigenomics is a part of report you get from Livewello. But the summit I am following is more detailed.

Hobbledehoy profile image
Hobbledehoy in reply to Simba1992

I eat organic eggs and dairy. Might that help?

Simba1992 profile image
Simba1992 in reply to Hobbledehoy

I f you can tolerate dairy. Which seems to mean that your digestion is in quite a good place, then eating organic eggs and dairy is a good choice for your body😊

in reply to Simba1992

I've never been given a medication by someone who has not undergone at least 5-7 years of intensive medical academic and practical training. I have, however, received unsolicited and downright dangerous dietary advice from people with no formal qualifications.

We know diet - and weight - is an important part of overall health, not just for rheumatoid arthritis. I'll still keep dumbly "eating" my pills while I look at other aspects of my life too though.

Damaged profile image
Damaged in reply to

I agree, the wrong diet can do as much harm as the illness itself. Nutrigenomics is how given your genome, your body processes food. It is based on your genetics period. We need to learn what works for us not what works for others.

Nettac profile image
Nettac

Just like with meds, different people react differently to various diets.

I tried the vegan diet for a hood six months, and became increasingly unwell. I became anaemic, weak, and experienced awful pain and swelling. Also experienced frightening drops in blood sugar (non diabetic). Turned out that grains, beans, lentlis and onions are a big problem for me. Partly (I think) due to bowel issues.

I've been better since stopping those foods, not perfect, but better. I reintroduced small amounts of organic meat, including liver twice a month. I am no longer anaemic!

I don't eat much meat, but I clearly needed some. Diets need to take into account the individuals health status. What suits one person, can do significant harm to another.

Damaged profile image
Damaged in reply to Nettac

Exactly right Nettac. Some will need high fat low carb where others need the exact opposite.

I strongly recommend everyone have genetic screening. It is widely available and very cost effective now.

It eliminates the mistrust. I was tired of being used as a lab experiment. Try it and see was an endless round of hives, mouth ulcers, horrible headaches, Pityriasis. Ext Now I review every proposed treatment.It covers many Biologics but certain drugs like Actemra have not been on the market long enough to collect data. The new Biosimilars will likely have same problem.

BerOGrady profile image
BerOGrady in reply to Nettac

Hear, Hear nettac, people have complex needs and triggers and we all work slightly differently to each other. Figuring out how to solve RA pain and swelling naturally is a mystery to many partly at least because there are so many variables. The diet cures work for some people but for others such as for my daughter who has followed a few RA healing diets along with me, diligently and without cheating over a long period of time, they have had no effect. Except for wheat, she knows that wheat definitely sets her off, she tried some lately after over a year not eating any and it set her off so wheat is out for her for the foreseeable future.

medway-lady profile image
medway-lady

I'm Celiac had a blood test that said it was positive for the I think it was for the Intrinsic factor, hence don't eat gluten but love fudge, cream, cheese, butter all the other stuff. Life has to have some pleasure but has it made a difference to the RA?- NO.

It makes me cross if diet cured a disease then the NHS would have figured out how to cut the prescribed drugs a long time ago. Moreover, its not a new disease so can't be caused by modern diets anyway. For me it's simple my dad had it and so do I. For reasons no one knows some have the gene but never get the disease, some don't but do get it. One day the cause will be found but in the meantime, a good weight and activity will help everyone. That is common sense. My effort for tea tonight BBQ and no I'm not bothered if BBQ meat is potentially risky as so is driving along the M25 on a bank holiday. I survived that this morning. lol x

.

AbbeyRoad profile image
AbbeyRoad in reply to medway-lady

It's interesting that RA is very rare in third world countries. There must be a link with modern societies and autoimmune diseases.

Damaged profile image
Damaged in reply to AbbeyRoad

I would imagine they have far less exposure to pollutants caused by factories, vehicles and farming animals. I imagine their diets contain no processed foods and very little gluten or dairy. I would not consider it a healthy diet. They may not RD but starvation , rickets, malaria, TB...think I prefer RD. No prefer wellness.

hatshepsut profile image
hatshepsut in reply to AbbeyRoad

Third world medicine is unavailable to many, and often limited to life and death decisions.

An eminent professor, a patron of NRAS, who I know ,does volunteer work in a very poor part of Africa, and he has found the same rates of RD as in the developed world

Damaged profile image
Damaged in reply to hatshepsut

So it exists but goes untreated.

Damaged profile image
Damaged

I belong to several sites which analyze raw data from genome mapping. One such site is called Livewello. I love this site as it has the tools to search and understand genetic mutations.

There is a very large group who suffer from celiac disease. It may prove beneficial.

Fruitandnutcase profile image
Fruitandnutcase

I totally cut out gluten almost two years ago. I have Graves Disease which is overactive thyroid with antibodies, I also have IBS, asthsma, Dupuytren's which I believe involves the immune system although I don't think it is an autoimmune condition - as well as inflammatory arthritis plus my rheumy feels I could be heading towards sjorgens - I don't think that because although I have the driest of eyes my mouth isn't ever dry, I could be wrong about that that though. He also wanted to test for Coeliac but I don't want to go back onto gluten just to be tested.

I use Blue Horizons home fingerprck blood tests and in that time I have watched my thyroid antibodies plummet so what started as an experiment has become a way of life for me. I don't know what is happening with antibodies for any of my other autoimmune conditions but if the thyroid one have reduced I don't see why it won't affect antibodies for other conditions too.

Although I don't eat gluten I wouldn't say my diet is faddy in any way, it's probably like an old fashioned diet, the sort we ate when I was a child - I'm neatly 70 - nothing in it that I can't pronounce when I read the labels on anything I pick up in the supermarket. I eat meat and fish and lots of vegetables and I hardly ever eat food that's been processed although I do have the odd rasher of bacon or GF sausage (they are actually really meaty).

I do avoid grain based foods even GF grains and I wouldn't eat jacket potatoes although I can get away with three or four baby new potatoes (weird I know) because I discovered by testing my blood when the steroids I got for my arthritis gave me T2 diabetes that grains and jacket potatoes and a few other things really spike my blood sugar - apart from that I eat a very varied diet and I eat a lot. I don't snack though and I don't eat sweets, cakes or biscuits. Junk food is junk food whether it's GF or not.

The thing I miss most is a nice big fluffy fruit scone from our local garden centre tea room but knowing my thyroid antibodies are now practically zilch and my blood sugar has come down to normal keeps me on the straight and narrow.

Damaged profile image
Damaged in reply to Fruitandnutcase

My sister has Grave's and Fibromyalgia. She avoids all sweets and processed food. It works well for her.

Nettac profile image
Nettac in reply to Fruitandnutcase

That's interesting. I started off with graves disease (about five years ago) that seems to have gone into remission...then I had a huge flare up of PsA and bowel issues.

Grains and sugar certainly sends my blood sugar all over the shop, though I'm not diabetic.

cheshcat profile image
cheshcat

I think I'm not alone in that I tried "everything" before dragging myself doctor to doctor to figure out what was "wrong" with me (my health).

I remember doing the Whole 30 and I honestly felt worse at the end then the beginning. Some people said "you just need to do it longer". I don't know, I mean if I felt worse not better, I don't see that as being a good path.

I think part of the gluten free is because of the added folic acid and so many of have the MTHFR mutation. I grind my whole wheat grains and bake my own breads. If I do use bagged flour, I buy organic and make sure it doesn't have added folic acid.

I read that they think the gluten free craze has increased diabetes and I read another article that said they don't know why but white women are increasingly being diagnosed with colon cancer. When you cut out entire food groups, it's usually not a great idea. With gluten free comes a huge reduction in dietary fiber (beans, rice, wheat). This can't be a great idea overall. I'm hardly an epidemiologist though.

I try to eat as clean as possible. I buy almost all organic, cook almost everything from scratch, I buy raw milk, eat lots of beans and rice. Some meat. I love cheese, it's a problem, I'm sure I should eat less!

I think eating "clean" is obvious, don't eat crap, outside of that, I'm not sure of anything. Personally.

Fruitandnutcase profile image
Fruitandnutcase in reply to cheshcat

I've read that recently about not eating grain but I think I'll take the chance. I eat rice and beans too plus all theveg so my diet isn't totally devoid of dietary fibre.

These days for all you know the colon cancer business could be a rumour put about by bread manufacturers.

cheshcat profile image
cheshcat in reply to Fruitandnutcase

I think a lot has to do with environmental factors. There's a book - the 100 year lie. That will keep you up at night! And our gut microbes. It's all so complicated. I wish it was "one thing".

Damaged profile image
Damaged in reply to cheshcat

Absolutely true, not just leaky gut but lung share permiability. My neighbourhood seems riddled with autoimmune disease! The near nuclear melt down in Japan came straight to us on west coast! How much does the environment affect health ? Remember to think of your body and systems, gastrointestinal, bronchial, ammunition system all work together even if treated separately.

cheshcat profile image
cheshcat in reply to Damaged

There in lies the western medicine problem, they like to treat one thing and not the entire system as one. Although I'm not giving up my western medicine drugs! And I think a lot of us can remember Grandmas with curled and gnarled RA hands, before any of the "modern" foods or pollution, so I realize there is of course other things going on.

I guess after trying "everything", every supplement, every diet, acupuncture, natropaths, meditation, yoga, depression workbooks (I started to think, what if I am depressed?), therapy, everything I could think of, I thought back to my childhood. You know who was super healthy? All those dang hippies I grew up around. They ate little meat, mostly rice, beans, wheat, veggies, and fruit. So I just went back to my personal "roots", so to speak. I'm not saying it's done much because I'm in a lot of pain but I guess I feel better doing it this way.

Damaged profile image
Damaged in reply to cheshcat

The change is the quite dramatic as I grew up on a farm. We grew all our own food. But lives in a mining town. They would bring astronauts to prepare them for the moon. At one time their was black rock for as far as you could see. A lot has changed in thirty years but I assume that played a significant role as well.

Fruitandnutcase profile image
Fruitandnutcase in reply to cheshcat

Yes, when you think back to all the arthritic hands you used to see in 'the olden days' - like I said I'm nearly 70 so I go back quite a bit - and that was before there were as many people with allergies, fast food and modern chemicals etc it does make you wonder doesn't it.

When my doctor said he would refer me to our local hospital on a fast track referral I said that my fingers weren't gnarled or bent and he said that nowadays if arthritis is dealt with right away then you shouldn't see that at all. Believe me, I am so grateful to that guy.

Damaged profile image
Damaged in reply to Damaged

Immune system, lol got to love autocorrect lol

BerOGrady profile image
BerOGrady in reply to Damaged

Ammunition system! Love it! That awesome army that we all have inside, saw your correction below, immune, Both work, eh?

ITYFIALMCTT profile image
ITYFIALMCTT in reply to cheshcat

Are you in North America or Canada? I was just wondering because we don't fortify flour with folic acid etc. in the UK tho' several science and nutrition advisory bodies recommend the fortification.

Agreed on the high numbers of people with an MTHFR variation - is it something like 40-60% for some of the more common ones (depending on demographics like race etc.)?

cheshcat profile image
cheshcat in reply to ITYFIALMCTT

Yes, USA. I'm in Oregon :)

I can't remember the numbers on the mutation? I think you are right on the numbers though. I'm homogeneous for MTHFR. So I try to stay away from added folic acid. I buy a brand of Methylated vitamins (Thorne Research).

I have my promathease dna results and I could look them up to see how many people are like me (and Caucasian and live in north America I think are the demographics they split out) that are homogeneous for the mutation.

Damaged profile image
Damaged in reply to cheshcat

Yes I am Caucasian, Canadian. I grew up in Eastern Canada and thought I was mostly French but apparently I am 39% Irish/British. My father passed at 67 six months after my mom or I would tease him mercilessly.

I knew there was a reason I like this site over all the others lol

Damaged profile image
Damaged in reply to cheshcat

That is my attitude as well. Until I find out how I should eat I simply avoid things I know are bad and do not do anything in excess. I think to many vitamins and supplements can be dangerous as well. To much of anything is usually bad.

Nettac profile image
Nettac

Although I've cut out grains, lentils abd beans, it may be I can reintroduce them.

That said, I actually eat a wide range of foods, including fish,eggs, some meat, wide range of fruit and veg. Most vef is from friends allotments. I also forage, and recently collected field mushrooms, hazelnuts, plums, cherries and apples. Sometimes add nettles and dandelion.

Damaged profile image
Damaged in reply to Nettac

It sounds like a well balanced diet to me but then again, I know next to nothing about nutrition. Hence my decision to rely on Nutrigenomics.

kalel profile image
kalel

whilst I have not read all the comments I think everyone needs to remember we are all different for me being vegan and spending money on holistic therapy has changed my life completely and helped me reverse any RA damage, symptoms etc. I personally believe we are all different and I don't have the time to start replying properly atm about why I am not suffering but I do firmly believe that because I always believed I was going to do this and that and the other to reverse any autoimmune symptoms I have had that is exactly what happened to me. Take care y'all.

Nettac profile image
Nettac in reply to kalel

Kalel

That's exactly what people are saying...we are all different. What works for you, or me, may not eork for someone else. Great if tge vegan diet wirks for you.

ITYFIALMCTT profile image
ITYFIALMCTT

The last time I looked at the soundness of the research for nutrigenomics, it seemed that it's too young a discipline to be able to evaluate it, one way or the other. This review is pretty much inline with that: sciencedirect.com/science/a...

I'd be interested if people know of more recent and comprehensive meta-analyses or systematic reviews. Science-Based Medicine reviewed the topic in 2013 but I can't find any updates: sciencebasedmedicine.org/nu...

Lucy11 profile image
Lucy11 in reply to ITYFIALMCTT

ITYFIALMCTT,

I looked into it a few years ago and kept coming up with the same caveat as you. I have pieces of an interview with a professor of genetics that may be of interest to you. Sadly, I have to agree that it appears there's a long way to go before Nutrigenomics becomes really useful:

Commercial companies are in the business of piecing together some 45 different gene variants There are over 10 million variants in the human body. How accurate and useful could the results really be?

Commenting on whether honing in on 45 variants is enough to gain a deep understanding of what we should eat, Dr Tim Spector, Professor of Genetic Epidemiology, said: “sadly not.”

“Although diet choices are often partly genetic, these gene variants are often associated with risk of allergy or disease," he says. "They explain only a small fraction of the differences between people. There are a few exceptions like for lactose intolerance, coffee drinking or alcohol or coeliac disease but basing diet recommendations on genetic tests are not usually helpful."

Instead, he points towards the gut microbiome - which varies widely between individuals - as the best way to personalize a diet.

“Genetically testing your microbes is more valuable than testing your own genes at the present,” he suggests....

As a side note, I've had my microbiome tested through work but didn't pay much attention to it as it was comparing my microbiome to a greater population of which I knew nothing about. Healthy subjects were compared with possibly unhealthy ones. Nothing further was discussed.

It would be interesting if anyone on this forum has experience with microbiome testing.

kalel profile image
kalel in reply to Lucy11

I have learnt a lot about the microbiome over the years. Gone to talks on the subject. Listened to a lot of the high end dr's talk about this in the USA. I am really into learning about this stuff. I will say from experience if you can find a good dr that will go through this type of stuff with you it is def the way to go. The problem is finding a decent dr that can help and that is not easy to do.

Kai-- profile image
Kai-- in reply to kalel

May find AARA's post (& subsequent discussion) an excellent read, kalel: "Some Words of Encouragement. Severe RA and No Meds. right now. The Benefits of a Healthier Microbiome" healthunlocked.com/nras/pos... 🙏 🍀 🌺 🌞

Damaged profile image
Damaged

Not to mention one I can afford. Nutrigenomics however does not require a doctors intervention. A nutritionist trained in functional medicine is well suited and more affordable. I will post updates if I see any benefits to RD.

cappygal profile image
cappygal

Has anyone tried 23andme and can share if it's helped/what they've done with the info? I was almost vegan before my symptoms started had a food intolerance test done (a blood test) and found that gluten (gliadin), soya, lentils, yeast were a few foods that I was reacting to and it made a difference to cut these high lectin foods out. However that has meant eating meat again as lectin rich foods were my main protein sources. I would be very interested in connecting to people who are exploring nutrigenomics 🙂

Neonkittie17 profile image
Neonkittie17

I've been looking at nutritionists in my area to see if anyone can help me as I'm sure I'm deficient of some minerals. I eat well and could do better (re eating a few naughty sweet things but not all the time) but rheumatology or my doc don't seem interested in pursuing magnesium and certain B vits tests. I'm quite knowledgeable on food and what is healthy. Basically I think many of us can't move round fast enough most of the time or exercise aerobically to counter our our intake of calories. We need to ensure we get the optimum from our food. I think for me also it's a case of don't eat it if it makes my joints sore. (Oxalic foods and red meat) (Exception bacon sandwich every now and then!)

I am a great believer in comedienne Miranda Hart's dieting philosophy. In her book she writes on dieting ... "Eat less move more". 😁 Simple but not so easy when you have mobility issues and limitations but I am trying every day on both parts! 😃

Damaged profile image
Damaged in reply to Neonkittie17

That is all we can do, live your best life, whatever that means to you. I have lived with chronic pain for many years so manage it very well, mostly lol Migraines will do me in every time. But for the most part I have a pretty good attitude. Laugh as much and as often as you possibly can. I try to look my best , look good you feel good. All little ways to trick my brain. It works for me most of the time. We all have our limits.

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Neonkittie17

Neonkittie17 If there are blood tests that you want it's not unusual for there to be regular offers for bundles of vitamin/mineral tests from Blue Horizon, Medichecks and other companies. E.g.:

medichecks.com/health-check...

bluehorizonmedicals.co.uk/t...

It would be much better if you could get them done by a rheumatologist or someone with appropriate knowledge/interest to guide you on responding to the results, tho'...

Neonkittie17 profile image
Neonkittie17 in reply to ITYFIALMCTT

I will do thanks but I still would like to see a nutritionist. Any blood tests I would do via my GP. I just need to know what to look at and a qualified nutritionist at Masters level and above would be credible enough. I'm only planning on seeing a very experienced person. As I said, the rheumatologist has little time (or interest) at the mo. The links won't work for me just now but I'll try again later. Thank you for your help. I appreciate you taking the time to reply. 😀

Damaged profile image
Damaged

It is a saliva test, non invasive and done via mail. They send you a collection kit, you spit in it and they map out your entire genome. They will then provide you raw data. They also do traits etc but not the type of information I am interested in. With the raw data there are endless sites to interstate that raw data like,Livewello,

Permethrin, etc just google it. There are new ones all the time. Some require a physician but I would avoid those. Go with one that gives you control of information.

Neonkittie17 profile image
Neonkittie17 in reply to Damaged

Hi Damaged, Do you mean the Magnesium deficiency tests are saliva ones? I know there are several different types of tests including the EXE cheek swab. That could be more difficult to get analysis from. I understand it is an efficient one though. The others are blood tests/urine analysis. The Ionized test is also supposed to be accurate but not done everywhere. (Think this is the one where they give you some magnesium then see how much is retained in your urine but I may be wrong and they might call this something else!) I think the RBC is the most preferred test as it checks Magnesium stored in the red blood cells whereas the basic Serum blood test doesn't seem to be worth having as apparently there is only about 1% of our magnesium in our serum. Didn't think it would be straight forward! I am going to see my GP mid September.

Damaged profile image
Damaged in reply to Neonkittie17

I was referring to the genetic screening test not magnesium. I will however be asking my GP for a variety of test like magnesium levels.

Damaged profile image
Damaged in reply to Damaged

Thank you for the details regarding magnesium test. I do not talk to ND until October so trying to learn what I can on my own and via this site.

Neonkittie17 profile image
Neonkittie17 in reply to Damaged

It is vey daunting trying to gather information and process it. However we do need to try do all we can to help ourselves being informed and aware. I can see you are doing just that. Good luck.

Neonkittie17 profile image
Neonkittie17 in reply to Damaged

I have so many pointers towards magnesium deficiency but there is always something else health wise taking priory over getting tested.

Neonkittie17 profile image
Neonkittie17 in reply to Damaged

Sorry for the confusion! I'm seeing things a little fragmented on the iPhone and scrolling up and down 😁

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