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Celiac Disease


TicTac

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I was debating whether this forum would be an appropriate place to post this.  However after further reflection, the fact that this disease comes down to food and requires an alteration to ones diet, I felt it would be beneficial, perhaps for many people, as this disease gains more awareness, etc.

 

With that being said...

 

My 3 year old son was unfortunately diagnosed with Celiac very recently. 

 

I am curious to hear others experience with this disease, specifically regarding cross contact within the kitchen.

 

I have made a decision to join him in a Gluten Free diet, for support, as well as I have had IBS all my life and from my limited research, the change should have a positive effect (4 days in, improvements notice already).

 

Quite frankly, it hasn't been too difficult as we shop on the outer isles of the market.  I am however saddened by the loss of Pizza...

 

I would be curious to hear if anyone has come across a decent GF Pizza crust...besides that, I can handle the loss of bread, and its relatives.

 

It is an unfortunate disease, but fortunately with caution and monitoring, one can lead a relatively normal life. 

 

Would love to hear others experiences and any great GF recipes!

 

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I do not have the issue but have a favorite site. She has the problem clinically and her daughter has exhibited enough signs that keeping her g-free as well is the best approach. She has a site and posts on FB and Instagram.  Gluten Free Girl  https://www.facebook.com/theglutenfreegirl/  Her books have been well received.I think she is also quite receptive to inquiries as her passion for recognizing and dealing with the drama and nuance of the disease is high

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I am a retired Registered Dietitian in Canada and have had many Celiac patients while working on the Gastroenterology ward and outpatient clinic.  It is an unfortunate diagnosis but one that can be successfully treated with due diligence.  But it is a serious disease and I would encourage you to read up on the long term outcomes.  Now, I have been retired for 16 years so I am sure things have changed over that period of time.  

 

My suggestion would be to definitely seek out a Pediatric Registered Dietitian who has experience with this disease.  Not sure where you are but your physician's office would be a good starting point especially if it was a Gastroenterologist who you saw or the American/Canadian Dietetic Association may have a listing of Dietitians in your area with appropriate experience or the local hospital.  Be sure to use a 'Registered Dietitian" because they will be appraised of uptodate information about the disease and dietary management such as knowing all the ingredients that should be avoided.    And seeing your son is only 3 years old it is very important to get him on the correct diet. You will need help!  It would be a great idea if your family adopt a gluten free diet at home.  It would help your son to accept the diet and learn that it can be good tasting.  Who knows, you may be celiac also seeing you feel better after trying the diet for a few days.  We used to get 50 year olds who were diagnosed after years of suffering.

 

In Canada we have the Celiac Association and they were a wonderful group who held information and support sessions for new people and complied information about which local restaurants are good, etc.  They had a good product catalogue showing which products were gluten free.....a quick reference for when you are just starting out.  They also had a library of cookbooks or could recommend such books.  

 

When I was practicing my understanding was that is very important to be totally gluten free.   So x-cross contamination in the kitchen is a real issue.  Separate cupboards, toasters, cutting boards, etc.  This is why dinning out is a big problem..x-contamination.  If the gut is exposed to gluten it gets damaged and has to regrow the damaged cells.  During the time of damage, nutrients don't get absorbed properly and the gut's integrity is compromised.  Some people if they are continually exposed to small amounts of gluten do not respond when a totally gluten free diet is provided.  

 

I am sure there are a whole lot of snake oil salespeople out there who would be willing to take your money for advice or to offer a remedy.  My advice is to stick with the health professionals.  They will provide you with loads of good, reliable resources.

 

Sorry I don't have any recipes except learn to make a really good risotto and polenta

Edited by Okanagancook (log)
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Johnnybird has been tested many times for Celiac.  He doesn't have that as such but works better on a gluten free diet as he has several markers that make him gluten intolerant and has suffered for years with IBS - D.   He also is lactose intolerant which I have worked with for decades.

. I have worked in a bakery/ breakfast lunch place that was GF because  the owner's daughter had been diagnosed with celiac.  We were SCRUPULOUS about keeping all work surfaces/tools/etc separated.  As the dish washer I also had two different 3 sink set-ups for GF and regular tools.

Since we started eating gluten free it has been better.

Hang in there....DO get professional nutritional help.....

Nothing is better than frying in lard.

Nothing.  Do not quote me on this.

 

Linda Ellerbee

Take Big Bites

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My middle daughter was diagnosed with celiac disease when she was 20. She was already living on her own, so it was not a major adjustment for my cooking, but I obviously make adjustments when she visits.

 

Her hardest thing was pizza and pasta. At the time, rice pasta was about the only alternative, and it wasn't particularly tasty. The quinoa pasta available now is hard for me to tell from regular whole-grain wheat pasta. She has a pizza crust she likes from a local pizza place, but I don't know about anything she's tried to cook on her own as far as pizza goes (cooking is NOT my child's strong suit). Fortunately, she loves vegetables and fruit, so there's not a big problem in adjusting diet for her. 

 

She's pretty sensitive -- the amount of flour used to thicken a sauce for a dish for six will set her off with one serving -- but not so sensitive that cross-contamination has been an issue. Her husband and children continue to eat a limited number of products with gluten, though they don't eat a carb-heavy diet.  The only cross-contamination she worries about is oat-based products that do not specify they're gluten free; apparently many are made in factories that also process wheat, and there's enough contamination to sometimes bother her.

 

Some "fixes" I've found over the past 10 years...

  • Rice Chex crumbs will sub moderately well for bread crumbs in topping or thickening dishes. They will even make a respectable panade for meatballs or a meat loaf.
  • Arrowroot or cornstarch will sub for flour in making a roux or thickening a sauce.
  • Bob's Red Mill Pancake Mix is the best baking mix I've found for quick breads. Also works in streusel toppings.
  • As mentioned before, quinoa pasta.
  • A quiche bakes up just fine without a crust. So do most pies.

There's a much better selection of kid-friendly snack foods, etc., than when Cara was  diagnosed. Lots of GF snacks out there. Cara's particularly partial to gluten free graham crackers with peanut butter.

 

Don't ask. Eat it.

www.kayatthekeyboard.wordpress.com

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I can't sufficiently express the gratitude to you all for taking the time to post and share your experiences.  It means a lot.

 

@heidih - Thank you for the link, I will certainly be taking some time to go through her FB posts!

 

@Okanagancook - Lucky for us we are in Toronto and have access to one of the best kids hospitals in the world, Sick Kids.  Last week he had his scope and biopsy, the GI suggested she could essentially see the effects, interestingly enough (and luckily) the results came back, and while positive, it does not appear to have done as much damage as it might have.  We have an appointment with a Sick Kids Dietician next month.

 

@suzilightning - Has Jonny had a endoscopy with biopsy?  I have read a number of cases whereby people test negatively on the blood but a biopsy will show positive for Celiac.  Either way, you have already adjusted the diet so it would most likely not show up anyways.  We did not evolve eating gluten, only recently in the past few hundred years did it become a staple in diets.  No surprise that he (and I - and others!) have seen positive effects from eliminating it, Celiac or not.

 

@kayb - Thank you for sharing.  It must have been a rough 20 years growing up not knowing why she felt the way she did, until one day, such a significant change...one thing that I am curious about, which is hard to find concrete data on, is how people react to cross contamination or even minute amounts (if a mistake is made) - I have heard everything from very minor tummy aches, all the way to 2-4 day hospitalizations. 

 

Certainly lots of learning and experimentation to do.  My recent purchase which has been quite well received was Sweet Potato noodles.  Made a nice Korean dish with them, and a noodle soup as well.

 

 

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I have taken two university classes on nutrition for people with celiac disease. I am also an avid bread baker and vegetarian. IMO, much of the substitute stuff is terrible. Got some GF bagels from a local place and they were like eating rubber tires. The one totally GF free bakery in town does,  however, make some great cookies.

 

Europe has a much higher standard for stating something is GF than in the US. Something like 2 parts per billion, IIRC.  Here in Phoenix, only one bakery is totally GF. They started by remodeling the building and replacing all of the wallboard, ductwork, ceilings, flooring, etc. The air system filters outside air before it enters the building. Staff enters the building in a locker room where they don bunny suits. Every sack of flour, every single item gets a lab test to confirm that it is actually GF nothing testing positive is allowed further than the loading dock. Nothing with gluten has ever been inside the actual baking space. They test a sample from every batch they bake. They are the only place I would trust.

 

Some bakeries in the US make so-called GF foods on shared equipment or spaces with shared air vents, activities which are not allowed under EU law, as far as I know. There's a lot of shady stuff going on and I wouldn't trust much of what's on the market. -Or at farmer's markets. I know of people who cook so-called GF foods to take to the farmer's market in their regular kitchen with the same pans, counters, towels, AC ducts, etc. they use for making meals with gluten-containing meals. My advice is to trust almost no one and cook more at home in a kitchen that has been cleaned and upgraded to be gluten-free. (clean the air ducts, paint the walls, scrub every surface twice, scrub all the pans and dishes several times, get new linens, etc.)

 

In some baked goods, almond flour is an excellent substitute, in others, not so much.

 

IMO, you might have to say goodbye to pizza but substitute some other dish. Italy has a traditional casserole of rice layered with eggplant and sometimes sausage, I don't know a name for it, but it can be dressed up and customized to be very similar to lasagna and topped like a pizza. I think there's a lot one can do with pizza toppings if you think about it. And, maybe just order it out, one place here (with a separate GF kitchen space) has a really good GF pizza that surprised me.

 

I think in general we all make choices about what makes the cut for our MVP players in frequent rotation for dinner, or any meal, and if you get into the groove of making certain GF things more often, you'll miss the gluten much less. Start looking at all the varieties of rice and variations on cooking it, same with potatoes, quinoa, etc. Example: risotto, paella, pilaf, sushi, congee, etc. Maybe you'll find new things to feed your family that are delicious, just different. (instead of pancakes for breakfast how about a bowl of congee? instead of lasagna how about paella?)

 

I will say to be very careful with your son. Celiac disease is very insidious in that inflammation caused by it causes the permanent destruction of villi structures in your small intestines. So, a person can tolerate a little gluten here and there, and maybe 'power through' some pain. But their small intestine is being destroyed in the process and this will eventually affect how many nutrients can be absorbed from food and eventually cause severe malnutrition and shorten lifespan. So, every exposure is important to avoid in order to ensure that your son has the fullest possible life.

Edited by Lisa Shock
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@Lisa Shock - Totally agree with you.  So many restaurants offering 'GF' options have no clue the impacts trace amounts of gluten can have on an individual with Celiac.  A local pizza place delivery place (though I have never been a fan) 'Pizza Pizza' has GF Cauliflower crusts, but again, those are made and baked right next to the gluten laden flower and in the same ovens.  We did find an awesome place in Newmarket recently called 'The Maids Cottage' that has a totally separate kitchen area for GF - they are known for their GF offerings, and in fact, have the BEST butter tart I have EVER had, and it comes in a GF package, and I must say, the pastry was fantastic!  There is hope (least for the sweet tooth!).

 

@Okanagancook - Thank you - so kind, and yes, we are very fortunate to have access to Sick Kids.  Mexican has always been a favourite in my house, so I can absolutely see myself learning to craft fresh tortillas!

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 We need to recognize that gluten-free does not equal coeliac-safe and those with the disease or their guardians surely recognize that difference.  Restaurants are catering to a fad.  

 

(Since one of my sons was mis-diagnosed with coeliac disease almost 60 years ago  I know something about the disease. I had to treat him as though he had it until the diagnosis was changed some years later.)  And another child is “gluten-free” but by no means coeliac. 

 

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Anna Nielsen aka "Anna N"

...I just let people know about something I made for supper that they might enjoy, too. That's all it is. (Nigel Slater)

"Cooking is about doing the best with what you have . . . and succeeding." John Thorne

Our 2012 (Kerry Beal and me) Blog

My 2004 eG Blog

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This is a very timely subject.

 

My cleaning angel/friend is going through hell right now.  Long story short she probably has an auto-immune disease such as Lyme.  On top of that she probably has Celiac, too.  She is in a lot of pain and has lost a lot of weight--and she was tiny to begin with.  She's in the midst of a lot of testing and doing a biopsy next week.  Anyway, all this is just to say that we talk about it a lot and I've learned a lot through her.  She's been gluten free since the first day of February.  Her husband has always needed to be GF so she's used to cooking that way.  She's always on the look out for a GOOD GF bread recipe.  She really misses bread.  I've been sitting here trying to think of who it is on here and I can't remember but someone a while back made a good  GF pizza crust out of cauliflower.

 

Hang in there @TicTac   (((hugs)))

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27 minutes ago, Shelby said:

This is a very timely subject.

 

My cleaning angel/friend is going through hell right now.  Long story short she probably has an auto-immune disease such as Lyme.  On top of that she probably has Celiac, too.  She is in a lot of pain and has lost a lot of weight--and she was tiny to begin with.  She's in the midst of a lot of testing and doing a biopsy next week.  Anyway, all this is just to say that we talk about it a lot and I've learned a lot through her.  She's been gluten free since the first day of February.  Her husband has always needed to be GF so she's used to cooking that way.  She's always on the look out for a GOOD GF bread recipe.  She really misses bread.  I've been sitting here trying to think of who it is on here and I can't remember but someone a while back made a good  GF pizza crust out of cauliflower.

 

Hang in there @TicTac   (((hugs)))

We are lucky in our family that we have no such problems (to date anyway.)

But what I wanted to add is that a dear friend has Lyme disease and that it led directly in her case to Crohn's.  Lyme is one insidious disease. 

Darienne

 

learn, learn, learn...

 

We live in hope. 

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My best friend has recently been diagnosed with it, and initially had a very stict diet (no meat, no poultry, no fish, even some vegetables were on the blacklist)... As her organism recovered most of those restrictions were relaxed and she's been only on gluten free diet since.

 

As the prices of GF product are exhorbitant in my country, it's been a great help to her that state-run health care provides celiac disease patients with certain amounts of two types of GF flour on monthly basis. She says those quantities are about sufficient.

 

Hang in there. 👍

Edited by Wolf (log)
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A cigarette is the perfect type of a perfect pleasure. It is exquisite, and it leaves one unsatisfied. What more can one want?  - Oscar Wilde

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@TicTacThe Canadian Celiac Association’s website is not functioning and the Toronto chapter website is out of date. So I am not sure what is going on.  The Kelowna chapter’s site is working so you can see what these organizations have to offer. https://kelownaceliac.org/

Maybe ask the Dietitian when you meet.

 

 

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16 hours ago, TicTac said:

I can't sufficiently express the gratitude to you all for taking the time to post and share your experiences.  It means a lot.

 

@kayb - Thank you for sharing.  It must have been a rough 20 years growing up not knowing why she felt the way she did, until one day, such a significant change...one thing that I am curious about, which is hard to find concrete data on, is how people react to cross contamination or even minute amounts (if a mistake is made) - I have heard everything from very minor tummy aches, all the way to 2-4 day hospitalizations. 

 

Certainly lots of learning and experimentation to do.  My recent purchase which has been quite well received was Sweet Potato noodles.  Made a nice Korean dish with them, and a noodle soup as well.

 

 

There were a lot of health issues that befuddled us. She had her gall bladder removed at age 19 (none of the usual risk factors; not middle-aged, never been pregnant, not overweight). She had a thyroid issue (will be on synthetic thyroid hormone the rest of her life). But the thing that almost drove us over the edge was constant anemia. She went a hematologist in Memphis who simply treated the symptoms (iron infusions every three months, when one should last for more than a year!). I got a different hematologist in Memphis to see her. He took one look at her labs and said, "I would be willing to bet you have celiac disease," which neither of us had ever heard of. She went to a gastroenterologist for an endoscopy, and sure enough, there it was. 

 

I'm glad you caught this early. Hopefully you will avoid the worst of the associated health effects.

 

It's my understanding people suffer from different levels of sensitivity. My daughter's got much worse, for instance, after she had her second child. Her reaction to exposure to small amounts now is usually stomach upset and bloating, and inflammation in the joints of her hands.

 

 

Edited by kayb (log)
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Don't ask. Eat it.

www.kayatthekeyboard.wordpress.com

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Here is a very good description of Celiac disease with various tabs at the top.  This tab talks about treatment.

https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225

 

NO amount of gluten is good for those with Celiac.  Just to clear...NONE which means ZERO

 

sorry

just trying to be helpful

 

my two neighbours have Celiac and they aren’t that careful because they don’t feel bad...drives me nuts, but I have had my say with them..they are adults.

😍

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@Anna N - You are absolutely correct, just because a restaurant has a menu item labeled as 'GF' does not mean it is Celiac safe!  Though from what the dietician has told us, in Canada, if it labeled GF, it is safe to eat and there is no cross contamination. 

 

@Shelby - So sorry to hear your friend is suffering.  Hope she finds some answers so she can make the necessary adjustments to feel better (soon)!  Thanks for the link.

 

@Wolf- Very interesting that they eliminated proteins as  well, I don't quite understand that, but at least she is feeling better!  The Canadian gov offers tax rebates for GF purchases for someone with Celiac and we just learned there is a disability fund available (around $250/month) to offset the increased costs and medical expenses.

 

@kayb - At least she is aware of what she has to now deal with and no more befuddlement as to her symptoms.  I believe with smart choices, one can lead a relatively 'normal' life with this disease. 

 

@Okanagancook - That is quite strange, especially given the associated long term health effects of overexposure (lymphoma, low bone density, etc)

 

Interestingly enough I also learned that they are now starting trials of a drug 'NexVax2' to treat the disease.  Hopefully in his lifetime advancements are made to counteract the effects of gluten on a Celiac patient.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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If the patient’s gut is very damaged then a very limited diet would be prescribed to ‘rest’ the gut so it can heal.  Such a diet is usually in place for a limited time because it is inadequate nutrient wise.  In severe cases when the patient is malnourished to begin with, we have put them on intravenous feedings for several days in hospital in an effort to quickly heal the gut.

 

That is excellent news about the funding available.

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Interesting.  Makes sense.  It is also notable that my son, ever since changing over (apparently it only takes 3-4 days for the gut to begin to heal and be able to re-absorb nutrients) he has had a huge appetite.  One of the things to watch for is weight gain in kids especially who have Celiac and change to GF, as their bodies want to almost make up for lost nutrients, thus the increased hunger.

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1 hour ago, TicTac said:

a N - You are absolutely correct, just because a restaurant has a menu item labeled as 'GF' does not mean it is Celiac safe!  Though from what the dietician has told us, in Canada, if it labeled GF, it is safe to eat and there is no cross contamination. 

 I find that absolutely incredible and would take it with a grain of salt. If I or a member of my family or a friend was truly suffering from coeliac I would not take them into some of the restaurants where I have been that claim to serve gluten-free dishes.  YMMV. 

 

 Glance at this!  Gluten friendly! What the hell does that mean? I know someone who visited this restaurant and explained that she was gluten intolerant and they were extremely sympathetic.  Her meal was gluten-free but it was her birthday and they presented her with a lovely piece of birthday cake. She was wise enough to ask. No. It was not gluten-free.  They apologized and brought her ice cream.   Do you really want to trust anybody’s health to that?   Fortunately gluten-intolerant is a very different condition than coeliac disease. 

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Anna Nielsen aka "Anna N"

...I just let people know about something I made for supper that they might enjoy, too. That's all it is. (Nigel Slater)

"Cooking is about doing the best with what you have . . . and succeeding." John Thorne

Our 2012 (Kerry Beal and me) Blog

My 2004 eG Blog

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Your son must be a happy little boy.  I bet you are very relieved.  Onwards and upwards as a good friend mine always says after a set back.

The weight gain will slow down.  He is replenishing is muscle and liver glycogen.  The glucose he is now absorbing couples with water to form glycogen thus the rapid gain in weight.....mainly water not fat.  Same thing happens to people following a low carb diet when they resume eating carbs...they throw their hands up and believe carbs are making them fat.

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FWIW, rice and potatoes will help assuage the hunger he's feeling from the lack of simple carbs in bread products. Might try upping those in his diet for a while. Cara was big on grits, as well; she loved them before any of these issues showed up.

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Don't ask. Eat it.

www.kayatthekeyboard.wordpress.com

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12 hours ago, Anna N said:

 Glance at this!  Gluten friendly! What the hell does that mean? I know someone who visited this restaurant and explained that she was gluten intolerant and they were extremely sympathetic.  Her meal was gluten-free but it was her birthday and they presented her with a lovely piece of birthday cake. She was wise enough to ask. No. It was not gluten-free.  They apologized and brought her ice cream.   Do you really want to trust anybody’s health to that?   Fortunately gluten-intolerant is a very different condition than coeliac disease. 

3

 

I looked at the menu. Their Caesar salad is one item in their 'gluten friendly'  section of the menu. One item listed as part of the salad is croutons. I suspect they don't have separate dishes, pans, linens, or silverware for people with celiac disease because they seem to have such a poor understanding of it. 

"Run away!" -King Arthur, Monty Python and the Holy Grail

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My daughter doesn't have celiac disease but does have a severe (diagnosed) gluten intolerance, which basically boils down to all the misery but without the physical damage (so...that's something, anyway). She finds the GF cheese pizzas from Costco to be adequate to scratch that itch, though certainly not stellar. As mentioned upthread, she also keeps a bag of masa harina on hand for making tortillas (and/or corn chips) when she feels the urge. She's on a fixed income right now, which makes it impractical for her to just buy them.

 

The gluten-free sandwich bread from America's Test Kitchen is the best my daughter knows of. You can make it with their custom blend of flours, or with any off-the-shelf GF all-purpose flour (it's best with their mix, though). It's paywalled at the ATK site, but a blogger who reviewed one of their cookbooks posted both here:

http://tasty-yummies.com/gluten-free-classic-sandwich-bread/

 

I'm pretty sure I originally got the link from someone here, so thank you whoever you are. :)

I've made it several times and it works well.

 

 

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"Not knowing the scope of your own ignorance is part of the human condition...The first rule of the Dunning-Kruger club is you don’t know you’re a member of the Dunning-Kruger club.” - psychologist David Dunning

 

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