This is not one of those things that will keep me up at night. I won’t lose a whole lotta sleep over it. I have enough things in my life to worry about.
But something about it just doesn’t sit well with me.
The “Celiac Awareness Tour” has officially changed their name to the “Gluten-Free Awareness Tour”.
Why would they want to promote “gluten-free” instead of “celiac disease”?
Now…to be fair, I’m not a big fan of these events. It’s mostly just a food orgy. And a few vendors have reached out to me privately with some complaints about these tours as well.
(On a side note, I’ll be attending the Gluten Free Expo next weekend in NJ. To all the vendors who will be there…I promise to play nice and I look forward to meeting you. No…seriously.)
But still…at least the name of their tour was awesome. They were spreading CELIAC AWARENESS.
But now they are spreading gluten-free awareness and I ask you…does gluten-free really need any more awareness?
The gluten-free trend has gotten so pathetic that Hallmark just came out with a card that mocks us (see image to the right)? Wonderful.
Yet celiac disease is still so under-diagnosed and misunderstood.
Consider these facts:
- Celiac disease affects almost 1% of the population yet many of those 1% are suffering because they have not been properly diagnosed.
- Untreated celiac disease increases the risk of cancer 200-300%.
- Untreated celiac disease increases the risk of miscarriage 800-900%.
- 66% of those with celiac disease have osteopenia or osteoporosis.
- 51.4% of those with celiac disease have neurologic disorders.
- Total US healthcare cost for all untreated celiacs: $14.5 – $34.8 billion annually.
Shouldn’t we be raising awareness for the disease itself and not the treatment?
Do cancer organizations have “Chemotherapy Awareness Tours”?
I did reach out to the Celiac Awareness Tour folks last week but did not hear a response. I’d love to hear their take on this.
And I’d love to hear yours as well.
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Update: It’s only 9am and I’ve already gotten a bit of passionate feedback from folks who don’t have celiac and have non-celiac gluten sensitivity and think I am being exclusive. I assure you…I am not. We are all in this together. But the tour folks are not touting NCGS as part of their purpose. They say their tour “promotes celiac disease awareness and gluten-free food and beverage products.” Not a word about NCGS.
Where did you get those stats? I would love to share the resources.
I totally made them up to make my blog post more dramatic.
Just kidding…here is the link: http://www.csaceliacs.info/celiacdiseasefacts.jsp
I’m in 2 minds about this Gluten Dude. On one hand “gluten free” has become a major fad. People think it will help them lose weight (funny thing, I’ve gained since going GF!), its popular (yet for some reason people think they should pity me and my lack of food options) and it is a money maker. So, does it really need more press? Possibly.
I say this because many “gluten free” foods out there are down right lying. Twice this week I’ve decided to treat myself. As a celiac I don’t often buy candy or cookies, I get no fast food, I very rarely get to have a night off of cooking. So this week I thought, “Screw it! I’m buying crap!” I got home with my gummy candies, popped about 3 in my mouth and quivered with excitement. Yay gluten free candy! Flip the bag over…. “Contains wheat.” Crap. There was 3 days of pain. Bought myself some shortbread cookies today. Crammed 2 in my mouth… Flip the box over “Contains wheat”. What the???? Seriously? I get to have 3 more days if pain now. Awesome.
So maybe some gluten free awareness is a good idea. Maybe any education is good education. But until people work it out, I think I’ll stick to apples.
You sadly cannot trust the labels. Always check the ingredients.
I eat Crown Prince sardines in a BPA-free can, fresh greens (green lettuces, spinach), avocados, lots of fruit, oil and vinegar dressing, sardines, sardines, some hard boiled eggs in my salad greens sometimes, avocados, some organic chicken, sardines, did I say sardines?
If you catch it this quickly, there is something to be done! Activated charcoal. It’s what they use in hospitals for certain poisons (the ones you don’t want to bring back up). It adsorbs (yup, ad.) the food/poison, and protects your body from it. You’ll pass it harmlessly.
I have an autistic son with celiac disease. He’s quick. He’ll yoink a cookie out of a stranger’s hand and stuff it in his mouth in the blink of an eye. I carry charcoal in my purse. It really does work. However, you have to take it *immediately* after ingestion. Once the gluten passes the stomach and starts into the intestine, it’s game over.
I was going to give the organizers the benefit of the doubt and suggest that they were trying to encompass those with non-celiac gluten sensitivity, a condition that also suffers from a lack of awareness. Many people still think the gluten-free diet is for weight loss or just generally “healthier,” OR think of it as a fad diet with no real relation to health at all, so people with NCGS suffer from being misunderstood or not taken seriously.
It doesn’t help that even researchers aren’t clear on what is involved with NCGS or even whether it’s gluten or another part of the grains that is causing people trouble—I find that if I say “I eat gluten-free,” I meet with eye rolls, but if I then add “because I have celiac disease,” suddenly it’s a legitimate choice. (Which signals that, at least in some circles, celiac awareness is taking hold…or maybe it’s just the word “disease” that gets through to people.)
“Celiac and non-celiac gluten sensitivity awareness tour” doesn’t have much of a ring to it, so I could see shortening to gluten-free.
BUT…on their own website’s “about” page, they write, “The Gluten-Free Awareness Tour promotes celiac disease awareness and gluten-free food and beverage products.” So…nada about NCGS. I think you’re right. Something’s off.
I thought about that too Molly but yep…they are plainly promoting gluten free food. I think NCGS needs its own awareness tour as it’s been getting slammed lately as not real.
Yes NCGS, or Gluten Intolerance (which is more what it feels like for me, a complete TOTAL intolerance for the most microscopic molecule from a derivative of a derivative of a derivative of gluten), is NOT recognized by people. They insist I have Celiac, and I’m so sick of trying to be medically accurate about my autoimmune disease. It’s really nobody’s business WHY I don’t eat gluten, what has happened to medical privacy? But we end up having to explain to complete strangers (restaurant staff, servers at events, etc.) OR disbelieving friends, or friends of friends, that we have a “disease.” I don’t know THEIR disease, but then they seem to know all about mine. I really feel like just lying and saying “I have Celiac disease and I will become very ill,” or maybe this would work: “I have a gluten ALLERGY and I will become deathly ill before I even leave this restaurant if my food gets cross-contaminated.” Yeah, I like the “Gluten Allergy,” (even though it would be much better if it were only wheat allergy). Somehow I think people will imagine all sorts of horrible things if I say “allergy.”
But I am really disgusted with what seems like TOTAL LACK of coverage in the media of Gluten Intolerance. Thank you Gluten Dude for including us here. If you included us more, I mean if you included more posts that are specific to Gluten Intolerance, I think you could grow your readership and empower us all more as a group of people who cannot eat gluten.
Actual medical Gluten Intolerance is estimated to be far more common than Celiac, and at least as under diagnosed. Yet Gluten Intolerant people would have no way to manage in the world, and would get no respect at all, without all the attention Celiac disease is getting.
Imagine how much the huge number of people with Gluten Intolerance could help the cause for Celiacs? And the more exposure Gluten Intolerance gets as a real disease, the more people will take it seriously and stop messing around with “gluten-free” as a fad diet. I’m really sick of people saying to me things like, “I felt so much better when I was gluten free,” or, “My psoriasis cleared up when I stopped the gluten,” etc, and yet they go right back to eating the stuff because they say they “don’t really feel that bad.”
One problem with any awareness campaign is that we all have only so much awareness to go around. We’re all constantly overstimulated and attacked with things that are or seem important, and concentrating on any one of them usually means concentrating less on others, even those that are related. Plus, everything has to be short, snappy, and direct or else you lose people’s attention right away, so it’s tough to get all of the appropriate subtleties into the messages you’re putting out.
For me, I’m painfully aware that every moment I spend thinking about celiac awareness is a moment I’m not thinking about, say, AIDS or malaria or homelessness or gay rights awareness…or NCGS awareness. I just looked back at my own post about Celiac Awareness Month in May (which is here, if you’re curious) and realized that I didn’t mention even once gluten sensitivity or intolerance…though I’m certainly aware of them!
I think you’re right that celiac and NCGS need to be better linked together in the public and medical understanding and that that starts with the patients themselves. We need to reach across the aisle, so to speak. It’d help to have a suitable umbrella term, but I personally don’t like the idea of “gluten allergy” because it’s just so scientifically inaccurate—so any time we use it around someone who does know a thing or two about gluten, we sound less educated yourself. Plus, it makes people more likely to think of it as a liar/faker’s malady, because they don’t see us go into anaphylactic shock after getting glutened!
Thanks Molly. You make me feel validated. I had similar thoughts.
When I am giving my speech to my server at a restaurant, I feel like I’m lying if I say I have Celiac Disease – because I don’t. I’ve struggled with exactly how to talk about what will happen if they serve me gluten. It would be so much raiser if I could say “celiac disease”.
See my comment above!
Yup, I re-commented above, too. I’m glad my response was helpful to you. We’re all in this together!
Back before I was diagnosed with celiac, I tried going gluten-free for a while just to see if it would help with the symptoms I’d had for some time. I went out to eat for my birthday and the waiter messed up and gave us crackers with the gluten-free app we’d ordered. When I said something about it, he came back with the manager, who asked point-blank if I had celiac disease. Though I’m not sure it was her intent, I felt totally confronted and embarrassed as I stuttered that I didn’t know, I was trying it, blah blah. I feel your pain and I hope you figure out the response that works for you. Maybe just “Gluten makes me very sick.”
I actually like to insert a good bit of humor into the issue. ( I kinda like the Hallmark card above) But this is just how I handle all the issues in my life. If I don’t laugh, I’ll probably break down into a weepy sobbing pile of tears. So I say something like “Hey, here’s the deal. I need your help navigating your menu tonight. Can you help me? Or can you find someone here who can help me? You see gluten makes me REALLY sick. It’s not pretty! So I need to know what menu options are going to be safe for me tonight.” Everyone is usually smiling at this point and the mood is serious and happy at the same time. My last server said,”I’m not good with this sort of thing but I promise I’m going to take care of you tonight so you don’t get sick.”
What more can I ask for?
I really like your approach, “the other half cat”. That wording is perfect and makes them feel like you want to work with them versus expecting them to accommodate you. I like it!
This has been happening to me lately. I say I’m gluten-free, then order and ask if that’s okay. The server will come back with, are you seriously allergic to gluten, or does it just bother you a little?
Is that their business? Can’t I order GF without a doctor’s certificate?
I now say, I’m not celiac, but if you feed me gluten I will immediately fall asleep on your table and you will not be able to move me for several days. And I’m not kidding. So we’ll both be happier if you feed me GF food.
What’s the deal? Why the inquisition?
🙂
My vote is its good old fashioned getting butts in the seats. As you pointed out the food orgies are used to release new products & taste test those from larger manufacturers to create a buzz without any additional marketing cost.
More bodies clamoring for the new amazing gluten free thing (here it was almost like flour tortillas (after toasting of coarse) the less must be spent on real advertising. Get a bunch of hungry people on social media clamoring for your product & job done. Problem is celiac disease & all the associated issues get swept under the rug in a shower of crumbs.
Had 2 funerals monday & stopped by restaurant I’ve been going to since I was a kid. Ordered off regular menu but asked for GF menu later because I wanted to know if a rice dish was safe or not. Hostess says “oh that gluten free diet our GM has that & usually comes over, but he’s not here today. Every one is on diets these days. Gluten free, dairy free, calorie free…” Then starts laughing at her own joke.
In zero mood for bullshit & already in emotional overload I level a stare & say…”You know I would love to eat gluten, & dairy & even calories but my body considers that stuff rat poison in my food so yeah I take it badly”. By this time I realize I’m standing over this woman towering over 6ft in heels looking down on her 5’2 of old lady ignorance & ask “understand now?”. Wasn’t my finest hour for advocacy.
“Wasn’t my finest hour for advocacy.”
I think you did just fine 😉
I totally will shake your hand for that moment of advocacy.
Wow. I think that WAS your finest hour. What an inspiration! Rat poison! I’ve said that too, “It might as well be rat poison to ME!” I have, on occasion, succeeded without even trying, in sort of ruining the moment for people stuffing pasta and all other manner of gluten in their faces while I sat at the table having a martini for dinner because there was nothing I could eat or I was still recovering from my latest glutening and not eating. My non-eating presence makes people uncomfortable, guilty, and somehow, magically more aware of how “stuffed” or “bloated” they feel afterwards.
Funny that you mention that… I am often the only person at the table completely comfortable with the fact that I am not eating while everyone else is stuffing their faces. Nothing turns the table more in terms of making people feel awkward than the person who chooses not to eat at all for health reasons!
Dude, lets remember, celiac is not the only horrible disease out there. Yeah, I get it, your celiac sucks. You hate it. It threatens your life. But there are many people out there living with terrible chronic diseases that are tragic. And many of those people are discovering that a strict gluten free diet is helping them live a healthier life. Many people are discovering they are living with a much less recognized Non-Celiac Gluten Sensitivity. And these people have the same doctor horor stories, get the same rolling of the eyes from everyone in their lives as the carefully read the ingredients list of every package at the grocery. They are living with all the symptoms you have, all the pain, and all the tragic long term complications without having a nice recognized, insurance coded, named disease like celiac.
Perhaps this is a response to the fact that not every who us living gluten free has a nice label like “Celiac”.
Are you willing to share?
I don’t wear celiac as a badge of honor and I give NCGS all of the credence in the world on my blog. Then my question is…wouldn’t you want the focus on NCGS and not on the food itself?
You must think these people have a warm fuzzy place in their heart for you. Their not passing out free kittens! These are companies looking to increase profitability so that they can employ people who want to do things like feed their families. Yea. It sounds like evil capitalism. But we all need to eat. Even the people who work at those companies. And we all like to have food choices. If we buy it, they make more. If we don’t buy it they go out of business. It’s simple economics.
Yes, exactly, there should be an awareness event(s) for Gluten Intolerance (NCGS), there should be an awareness event that covers BOTH diseases equally. I think it’s good they changed their food selling orgy to “gluten-free” instead of “Celiac,” because it sounds like it has nothing to do with Celiac, but they should remove the word “awareness” and just call it a “Gluten-Free Food Convention.”
Am I the only one noticing the gluten-free logo has larger wheat on it?
Suppose advertising of “celiac awareness tour is now the gluten free tour…now with more wheat” is now considered helpful?
I thought you wanted less wheat. I’m sure it a graphic design decision and has very little to do with discrimination against the celiac community.
There needs to be a slash through the wheat; that would be a thoughtful design choice. There’s something off, as multiple others have already said, about this whole “awareness” tour and it’s promotion. If one didn’t know what Celiac is, or GF for that matter, it appears as though they are promoting wheat. Who is running that show? Maybe it is the graphic designers…
My supposedly ncgi doctor sent me a letter to tell me I have ncgi, so the good news is I won’t get all those nasty complications of celiac. Think I got the full 900% worth on the miscarriages, and high stats on a couple of others.
As a ncgi, would I rather hitch up with the celiac crew (and wait for medical science to catch up) or throw my hat in the ring with gf fad dieters?
Easy.
So interesting how my osteoarthritis has stalled now that I’ve discovered I am NCGI. It flares up only when I get glutened. And yes, people with NCGI suffer greatly, but they don’t always draw the correlation between the gluten and all the years they suffered and developed other diseases before finally finding out they are NCGI.
Hmmm, supposedly ncgi savvy that should read.
I think I’ve shared here that last January, while at my professional organization’s national membership breakfast, I had such a severe attack from eating gluten that I was taken from the event in an ambulance. As a follow-up to that event, and as a gentle reminder, I just sent a letter out last night to the recording secretary of my national professional organization asking that the conference planners for the organization remember the needs of people who have to eat gluten-free diets for medicinal purposes. After all, conference season is returning!
And it’s those three words… for medicinal purposes… that mean everything whether it’s celiac or NCGI. (Though I do like your comment, GD… is it a “chemotherapy awareness” tour? Yeah… I got your chemotherapy awareness right here, too. NJ accent sold separately.)
Before this discussion launches, I want to make clear that I think a lot of the processed GF food out there is $#!^ – and in no way medicinal. That is also an extreme to be avoided.
Please pass the kale chips.
Perhaps Gluten Sensitivity Awareness Tour…?
Didn’t go look at their site. This isn’t necessarily about them in particular, but here is some food for thought. There are a lot of people who are gluten free for medical reasons. Not all of them are celiac or NCGI. There are all sorts of AI diseases, autism, crohn’s (although more often I see people treating this with a grain free diet which makes sense), ADHD, mental issues such as bipolar, depression, schizophrenia, I’m sure the list goes on and on.
True, a lot of these people don’t have to worry about CC like we do. But many of them are also truly gluten free, not sort of gluten free, or gluten lite. While it is true that when we discuss issues such as CC and things that could make a celiac or NCGI sick that many others wouldn’t have to worry about, I think it is unfair to exclude them from the gluten free community just because they are doing it for a different reason. It is a difficult change to make in your life and frankly without the threat of an AI response I don’t know that I’d have the strength to do it, and yet they do. They deserve to be included as much as we do.
Before rushing to judgement, lets keep in mind that discussions about such things could have taken place before a decision to change the name. Part of that choice could have been that they want to include people who eat this way for other reasons. Those reasons are so varied that it would be impossible to include them all in a name or simple statement, and instead they said something about the food. Lets face it, disease or no we all love to eat! (BTW, I’m super excited for the gluten free expo up in SLC this fall. Jennifer will be there. Bring on the food orgy!)
I’m sure a lot of this had to do with marketing – expanding the target demographic to incorporate more people who eat gluten-free for a choice and/or health reasons. Personally, it bums me out because I’ve had a lot of people come up to me at “gluten free” expos that aren’t strictly for celiacs and talk about dabbling in it. Now, if they have real issues – I am 100% for them going completely gluten-free and getting tested, etc. But, it’d be like me going to a “paleo” conference, my heart isn’t in it and won’t be other than the fact that it is the new “it” diet right now. That’s why we all need to take advocacy and our own medical awareness OUTSIDE Of these conference and back int our own community.
Also, at the same time, there are numerous medical conditions that are helped by a gluten-free diet – I’ve seen people with autism, fibromyalgia and other inflammatory diseases say that eating gluten-free helped them. So, as much as I love to keep GF celiac and NCGS (because it keeps it where GF is a strict rule, not a non-challant way of ordering at a restaurant), these people need it as well. It’s hard to be all-encompassing and yet short and snappy marketing when trying to address an ENTIRE community that needs relief.
But if you’re doing gluten-free for weight loss – I hope I don’t see at the expo with a copy of Wheat Belly because I might cry.
Ugh so tired of the wannabes… And yes I know the gluten intolerant people have real side effects but a fair amount of the people have a beer or a cupcake now and then as a treat. I’d be one sick chick if I did that. It’s like being a little bit pregnant… You either are or you aren’t. All the people jumping on the gluten free band wagon is why people don’t take celiac disease as seriously as they should. I went to Red Robin for lunch last weekend and ordered a gluten free burger… The waitress asked me if I had an allergy or just following the fad. I wanted to just leave because my spidey senses were telling me that I was going to get poisoned cause no one takes it seriously anymore.
Did you get sick at Red Robin? I have not eaten out since being dx.
Nope I didn’t… But I asked her to show me my order ticket so I could see that it said gluten free, she even wrote extremely allergic on there. I think I may have scared the waitress a little.
I don’t know about all Red Robins, but I know that many of them take it seriously. The one here in Ypsilanti (near Ann Arbor) takes it seriously because I’ve spent a few years educating them. It’s been at least two years since I’ve gotten sick. But I also have my special waiter who knows me, and the managers all know me and they hover over my food when I’m in there to make sure it’s safe for my consumption. I know it’s a value of the national chain to be safe for people with food allergies and intolerances, especially for kids. I have friends out in Vancouver (WA) who have a daughter with severe peanut/tree nut allergies, and that’s one of the very few places they go because they take her needs so seriously. But like me, they also have a carefully cultivated cadre of waiters and managers…
Red Robin’s policy is to alert the manager when food related “allergen” issues are present to ensure you are kept safe. Although it may seem demeaning, depending on the delivery of questions, the server is attempting to determine if you are a fad dieter or a person that really needs the attention of their manager. ( hopefully you noticed your food was on a yellow serving plate and most likely delivered separately from the gluten filled foods)
I had an issue with P. F. Chang’s mixing noodles into a gluten free dish. Luckily I examined it as I served it onto my serving platter.
I totally agree with your sentiments above and I am disappointed they would change their name. However I am newly diagnosed as of May and I had not heard of this event before your post. Since being diagnosed I only eat foods that I prepare from whole foods and it sucks. I don’t eat the packaged gluten free processed foods at the store because 1) I am afraid of cc and 2) they are generally really bad from a nutrition stand point. This being said after four months of this I am ready for a food orgy and I am going to attend the Detroit tour/expo. I am also going to send them a message about my disappointment in the name change. Maybe I will find food at the expo that is not so bad and I can incorporate it into my diet, it is more likely I will indulge in samples for a day and go back to my kitchen prison. Thanks for the info.
Is there a Detroit Expo? Let me know where that is – I’m in Ann Arbor.
Here is the link. http://celiacawarenesstour.com/events/?event_id=947, It is on 9/7 at the DoubleTree on Southfield freeway. I love A2, when I was dx I cried when I realized zingermans was a thing of the past for me (petty I know). The things I would do to be able to eat a cupcake, brownie or a piece of pepper bacon bread from them.
Just to let you know, the Lapsed Anarchist himself (the founder of the Zingerman’s empire) is working on developing safe GF products from the Bakehouse. And I’ve never gotten sick eating GF meals at either the deli or the Roadhouse – which has the best GF fried chicken I’ve ever had, hands down.
Road trip to Ann Arbor, anyone?
Thank you for this article. I agree 100%. I was approached to attend and accepted but when I could not find enough info about it I declined. This was before they changed their name. I agree about the food orgy and the reason I declined was because I am a registered dietitian (and also celiac) and preach a more simple, natural way of eating gluten-free. I enjoy your blog and will share this post on Facebook.
So we were just at the Happiest Place on Earth (™), and every time we ordered food for my diagnosed Celiac daughter, they asked “Allergy or Preference”. Of course, we replied allergy. Could NCGS folks say they have an allergy to gluten? I don’t think that’s a lie, and you’re not saying you have Celiac. (FYI, Disneyland was great dealing with GF meals.)
Personally, I would just say lie. For instance, when I order GF for my meal to eat with my daughter, saying I’m also allergic is easier than saying “I’m not allergic, but if my daughter doesn’t like her food, I might need to swap. And I might want to try a bite of what she’s getting, and I don’t want Gluten on my fork when I take a bite. Or she might want to try mine.” I know our purpose is education, but you’re dealing with wait staff that wants to spend as little time as possible with you. Sometimes making it simpler is just easier.
I just wanted to say that I attended the Gluten Free Expo in San Francisco last February and met some great people there. The Red Apple folks—a great bunch of folks. The University of Chicago Celiac Center and a host of others. I tasted a few products and took home some samples. Some of the goodies not so good and some so delicious I would have made a pig of myself. We need so much more Celiac awareness. I am one of the lucky ones in that I think it was caught early enough–2 1/2 years of suffering after I went off a low carb diet and started eating whole grains with an occasional Twinkie lol. My intestines were normal after 6 months of the diet. The problem exists that more people will believe vacuous celebrities like Ms. Paltrow (I wish I could punch her in the nose lol just kidding) who think its fun and festive. Well its a big hassle if one wants to eat out. Real people have this and so many are not getting the help they need. I think we may be freaks of nature, but we are a mighty bunch. It kind of pisses me off that someone like Jennifer Esposito brings so much to the table about awareness, but whats her name Paltrow gets the accolades. There is something wrong with that shit. I wish one day I could meet Ms. Esposito and thank her for her voice for Celiac disease.
I totally agree dude, but apparently once again it comes down to money and more sponsors. I also have an issue with the Celiac Disease Foundation calling it a glutenfree diet instead of a lifestyle. Can we all get on the same frickin page please!!!
http://www.celiac.org/index.php?option=com_content&view=article&id=138&Itemid=239
The topic of promoting “Celiac awareness” (and gluten intolerance awareness in general)
AS A DANGEROUS HEALTH ISSUE
will likely be lost in the shuffle of all that packaged crap and giant orgy of a money-making opportunity
and that is why our very serious disease is a joke to so many people!!.
Add in:
those people who jump on the bandwagon half-heartedly or
write books suggesting GF as a weight loss diet and
a few celebs who “go GF for a week” but also “treat themselves and their kids with oreos” sometimes…
and it’s all an even bigger mockery.
RE: the “my ass is gluten free” card?
Well, so’s mine. 100% G F!
Kiss it, anyone who mocks gluten intolerance.
I’m just going to heave a big ole sigh right now……and go back to mowing the lawn.
I think Celiac Disease needs to maintain a hold somewhere! I completely agree that NCGS needs the same awareness. I fear that there are a great deal of folks in the NCGS category that may actually have Celiac Disease. I fear that doctors tell people to try gluten free life and therefore miss the window to rule out Celiac Disease. I think Celiac should be at the front of the gluten free pack because otherwise people run the risk of continuing do damage to their bodies. So many groups have dropped the Celiac in their title and joined the gluten free bubble category but I want a few that are exclusively or predominantly promoting Celiac Awareness. There are a few and I’m grateful. I often feel like the weirdo within the gluten free community. They don’t understand the extra attention I have to pay to avoiding cross contamination or why I avoid foods that are not made in a dedicated gluten free facility. Am I crazy for worrying that Celiac Disease should be ruled out as a first step before the whole world goes gluten free?
Nope, you’re not crazy, just correct. (Two things the public often gets confused.)
Rachel asks: “Am I crazy for worrying that Celiac Disease should be ruled out as a first step before the whole world goes gluten free?”
hell, no, hon….I agree! 🙂
….but some people will test sero-negative and some gluten intolerants are just “celiacs in waiting” but not full-blown celiacs on biopsy yet….and I do not blame them one bit for going GF after all testing avenues have been exhausted. I mean, who needs “permission” to do what needs to be done to feel well?
Gluten intolerance is a WIDE spectrum. Dr, Fasano et al. are trying to get the medical community on board with this concept..
THIS is the awareness the medical community–no, the whole world–needs to adopt….
…but with the caveat that it is a serious medical issue– not a lark, not a fad, not a weight-loss diet, not a trend and certainly not a joke..
No Rachel you are NOT wrong to believe that Celiac should be ruled out BEFORE a diagnosis of Gluten Intolerance is made; in fact any doctor that does not rule out Celiac is putting patients at risk, and should stop being a doctor. No one should be diagnosing themselves. But I believe that the medical profession are the people most in need of a lesson in “awareness.” Although I am seeing a world recognized Celiac disease specialist who is VERY adamant that I not ingest gluten to avoid further damage to my body, and who ruled out Celiac but diagnosed me with Gluten Intolerance, one of my OTHER doctors said, “Oh, you don’t have Celiac so you don’t really have a serious problem.” It’s pretty damn serious to me when I feel like every organ in my body has been poisoned when I accidentally ingest hidden gluten (which Gluten Intolerants seem to be more sensitive to than Celiacs). Very little is understood about Gluten Intolerance compared to Celiac disease, although Celiac disease, as far as doctors know so far, can be more serious. Doctors have recognized the existence of Celiac disease for a very long time, even though it has been grossly under-diagnosed. Gluten Intolerance on the other hand, was only recently recognized in a study published in 2012, as being a separate autoimmune disease that attacks the nervous system in a different way, and researchers are just beginning to look at this. This does not mean that Gluten Intolerance will ultimately continue to be considered “less serious” than Celiac. The damage untreated Gluten Intolerance does to the body may turn out to be just as damaging, but in different ways. I keep coming back to a KNOWN condition called “gluten ataxia” which is something people with Gluten Intolerant can develop. Symptoms creep in slowly and are often dismissed until it is too late and irreversible. It is often misdiagnosed as Multiple Sclerosis and other degenerative brain diseases, so really, NO ONE KNOWS, how prevalent it really is, even if at this time it is believed to be “rare.” All that means is that KNOWN cases are rare. So one must wonder, what other life-threatening diseases, with other names at present, are really untreated Gluten Intolerance? I am not diminishing the nightmare of trying to heal damaged small intestines while surrounded by doctors and restaurant staff and even family and friends who don’t take it seriously, I’m just saying that Gluten Intolerance should not be put on the lower shelf, it should be right up there on the top shelf, and we ALL should stand together on this to fight the ignorance; and by doing this we make a much louder noise.
I just need a few Celiac specific groups to stay strong and not drop the name because I feel that gluten free life is still drowning out the existence and need for increased awareness of Celiac Disease as well as other specific diseases. I am gluten free so I fit in that bubble, so to speak, but I often feel like an outsider within that bubble because I have Celiac Disease. I love that so much awareness is happening for gluten intolerance, gluten sensitivity, as well as all of the other diseases that benefit from a gluten free diet, but I still feel like Celiac Disease needs to maintain some individuality.
Dude, I am President of the Kentucky chapter of the Celiac Disease Foundation. And I’m not saying that to brag, but rather to give all possible punch to my next statement: You have the finest GF blog on the net, hands down!
Now, on to the meat and potatoes. First of all, NCGS may not even exist. My personal theory (no, this does not represent the official position of the Celiac Disease Foundation) is that NCGS may actually be an intolerance to FODMAP sugars. I worked out this theory a few months ago on my own, albeit with no clinical evidence to support it. But a research study was published just this week by Monash University in Australia, supporting the very idea: http://www.physiciansbriefing.com/Article.asp?AID=679164
Secondly, if the moniker “Gluten Free Awareness Tour” gets more people in the door, then you can make more people aware of celiac disease, although I much prefer the other opinion shared by so many on this page: it’s just a money maker in a free enterprise system, and I should rest me in the fact that the GF “fad” is causing people to discover that they are better off without this pesky little protein.
Finally, we at CDF in Lexington are gearing up for our own Expo in 2014. But of course, we’re doing it for all the RIGHT reasons. To that end, I would love love LOVE to hear what those vendors have “complained” to you about, as mentioned in your fifth paragraph. If you could share that, it might help us good guys to put on a better “show.” That topic might make a good follow up blog. Or, you can reach me through our web site at http://www.glutenfreelex.org.
May your blog increase!
Yeah, I’m in the same boat as Gluten Dude. The name change doesn’t sit right with me. I hope they get back to you, Gluten Dude. I’d like to know what their reasoning was behind the name change.
This is, in my humble opinion, just further evidence of the “watering down” of what gluten free means. There is celiac safe gluten free, and gluten free for everyone else. And unfortunately the world is catering to the latter.
And I just have to rant about a label I saw today:
GLUTEN FREE
May contain wheat (less than 20 ppm)
Is this because they’ve tested the product and know the exact level of gluten? Or because the test they’re using doesn’t measure below 20 and so there could be gluten but they’re not sure how much? How would others interpret such a label? I’ve seen the “may contain” disclaimer on lots of products also labelled GF, but never the extra bit about the ppm.
FDA standard for Gluten Free is 20 PPM. If you expect less switch to a vegetarian. Be thankful we have a standard now.
One of the overlooked issues with gluten free food is the high caloric count resulting from the use of fat laden ingredients (butter and oil) in order to simulate flour based foods. As a result, many of the foods are flavorful but fattening.
The fats are used for flavor, texture, and durability ( non-crumbling). As a result many people assuming all gluten free food is good for you are dreaming and probably gaining unwanted pounds. Eaten in moderation the fatty foods can be part of a healthy diet by appeasing urges to have gluten containing foods. However, there are ways to irradicate or simulate the foods that trigger pre gluten free memories. The reduction of fats in cakes and breads can be partially achieved by incorporating applesauce. The trick is finding the correct level of substitution
Try hash browns cooked on a ceramic pan as the basis for meal containing onions, peppers, mushrooms, and squash – yes squash.
Common sense, and the reason the “diet” fad has gained momentum is the healthy tag resulting from eating fruits, vegetables, and restricted grains.