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Ny Timies Health Page

phakephur

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phakephur Apprentice
phakephur
Posted

There is an Open Original Shared Link about gluten free diet. No new information.

The link may not work if you don't have an account.

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eleep Enthusiast
eleep
Posted

Oh, I kind of just want to smack them for not mentioning more specifics about why it's so hard to diagnose and what the specifics of the controversy are.

mandasmom Rookie
mandasmom
Posted
Oh, I kind of just want to smack them for not mentioning more specifics about why it's so hard to diagnose and what the specifics of the controversy are.

I actually think it was a really good article.

spunky Contributor
spunky
Posted

Well it's interesting, and probably informative...but, I feel somewhat irritated at the tone of the article in general. Being undiagnosed, mostly because I have no faith in doctors and am accustomed to dealing with problems on my own, I am quite sure by this time that I do have celiac disease, but have no "doctor proof" on paper. It's kind of embarrassing to me to think that people who know I avoid gluten may get the idea that this is some hypochondriacal, "alternative" trend or something, and not take me seriously, either for all the suffering I've been through or all the care I now KNOW I need to take in choosing my foods.

There seems to be this double-edged message: Yes, on the one hand, celiac is much more common than previously believed, and more and more people seem to be gettting it--and on the other hand, hypochondriacs who read a lot are having some sort of psychotic episode, IMAGINING that they have this trendy disorder.

eleep Enthusiast
eleep
Posted
Oh, I kind of just want to smack them for not mentioning more specifics about why it's so hard to diagnose and what the specifics of the controversy are.

Yes, it was a really good article in a lot of ways. I may just idealize the Times a bit too much and have gotten my hopes up about the extent to which they might be able to call attention to the whole thing in all its complexity. It's just really good that this made the Times! Celiac has gotten so much amazing publicity in a very short amount of time.

They mention latent forms of the illness and they mention depression, which are both very important aspects of the issue.

kbtoyssni Contributor
kbtoyssni
Posted

I thought it was a good article. I liked that they addressed the fact that some people are using it to lose weight when they don't have the disease, that testing isn't accurate if you've gone gluten-free, the last quote about it not being so bad to go gluten-free. Yes, there are some things they could have added and I wasn't too excited about gluten-free being a "fad", but I don't expect one article to contain everything - it would be twenty pages long! They packed a lot of info into this relatively short article.

ENF Enthusiast
ENF
Posted

I'm really happy about this article - many more people will hear about Celiac because of it.

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mookie03 Contributor
mookie03
Posted
I thought it was a good article. I liked that they addressed the fact that some people are using it to lose weight when they don't have the disease, that testing isn't accurate if you've gone gluten-free, the last quote about it not being so bad to go gluten-free. Yes, there are some things they could have added and I wasn't too excited about gluten-free being a "fad", but I don't expect one article to contain everything - it would be twenty pages long! They packed a lot of info into this relatively short article.

Funny, i laughed when they talked about using the diet to lose weight because you cant eat twinkies - i for one ate healthy before the diet and now i eat much more sugar, carbs, etc. b/c the gluten-free substitutes are simply not as healthy as their gluten-filled counterparts. I didn't love the tone of the article - i was thinking that if i didnt know anything about gluten i would have thought it was some weird fad or something. The writer seemed to think that people are blaming gluten for everything, when really i think a bigger problem is the lack of knowledge about gluten.

But, publicity is publicity. Great to see gluten in the times!

ekdumas19 Apprentice
ekdumas19
Posted

I was totally put off by this article. It barely touched on the symptoms or the struggles of people with celiac disease. Eating even small traces of gluten entirely interupts my life, its not just a nuisance. And by saying that gluten free products are practically on every shelf, it makes it seem like its not big deal. Well its a big deal to me! I mean yeah there are so many gluten free products out there, but a majority of them still taste terrible, are highly caloric, fall apart if I breathe on it, and are terribly expensive. I dont know anyone else who pays almost 5 dollars for a loaf of bread! Take out and delievry pizza is a pipe dream, nevermind eating out in restaurants still makes me nervous. Don't even get me started on people using a gluten free diet as a way to lose weight, I could literally smack them upside the head. Don't get me wrong, we have come a long way in terms of education, awareness, and the amount of gluten free products available, but I think the NY Times hardly did celiac disease, or even gluten intolerance justice.

ENF Enthusiast
ENF
Posted

Well, this may come as a shock to some, but take out and delivery gluten free pizza is not a "pipe dream" in NYC, and you can have many other foods from the gluten free menus in a number of restaurants here as well. It's only a matter of time until other areas have these options, and gluten free accomodations and services are still in their infancy in NYC.

glutenfreenew Rookie
glutenfreenew
Posted

Picazzo's is a restraunt chain in AZ that serves gluten free pizza. a little expensive but good.

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    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
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