Hey everyone…where have you been? Just kidding. I’ve been off the radar for a bit. Too much going on in my life right now and something had to take a back seat. And the last thing I want to do is post something just for the sake of posting something.
But the fact is I do enjoy this blog…tremendously. I do enjoy connecting with the community. I do enjoy the creativity that comes with writing a blog post. So I’m back.
Because I’ve been out of pocket and there is so much to discuss, let’s do a “stream-of-consciousness” kind of post.
And away we go…
Mrs. Dude
We received our first piece of good news regarding Mrs. Dude’s breast cancer. The genetic marker came back negative. This means our daughters will have the same risk as the general population of getting breast cancer. Phew! Mrs. Dude’s surgery is July 3 and six weeks of radiation kick off a month later. I cannot thank everyone enough for your prayers, cards, gifts, emails, etc. It’s meant the world to both of us. I heart boobies.
Your Emails
In addition to not blogging, I also took a sabbatical from returning your emails. I promise you I’ve read them all and will respond when and where I can. Don’t lose faith in me.
Jennifer Esposito
Lots of exciting things happening with my friend and fellow celiac advocate. Her facility, which will allow her to ship nationwide, is pretty much ready to go. Expect the website, which yours truly is building (what…you think I blog for a living??), will be live early next week. Also, Jennifer will be on The Daily Show with Jon Stewart next Tuesday. Continued kudos to Jennifer for her efforts to help the community. She is seriously good people.
A $16 Million Donation to Celiac Research
Major, major props to Phyllis and Ivan Seidenberg, who have donated $16 million to New York-Presbyterian Morgan Stanley Children’s Hospital for a program focused on pediatric-gastrointestinal disorders. The Seidenbergs made the gift because their grandchildren were diagnosed with celiac disease a few years ago. Their gift “is to help everyone who has been diagnosed and will be diagnosed with celiac disease.” How cool is that?? Probably the same amount of money spent on Kim Kardashian’s wedding. How sad is that??
The World Cup
I love so much about The World Cup, but as I watched the second half of the Chile-Spain game yesterday, two things jumped out at me as why perhaps the sport has not caught on in this country so much. 1) The fake injuries. It’s just embarrassing. Seriously…just stop it now. 2) With 20 minutes to go in the game, the announcers all but conceded that Spain wasn’t winning. When a two goal lead with 20 minutes to go pretty much guarantees a victory, where is the room for drama? And we Americans love our drama.
My Birthday
Another birthday rolls around again on June 22. Crazy how it happens the same time each year. I’m spending the weekend in one of my favorite places (New York City) with my favorite person in the whole wide world (Mrs. Dude). Lots of good eats and drinks coming our way. And whenever it’s my birthday, I always post this video because…yes, it’s just that awesome.
A Dudette Graduates
Yes…one of my children graduates high school today and will be off to college next year. How the heck did that happen so fast? I swear it was yesterday we brought her home from the hospital. My heart is filled with pride.
A Bart’s Bakery Update
I was going to do a whole blog post about this but perhaps everyone is “Barted out” by this point.
So Bart continues to use glutendude.org to promote his bullsh*t. The other day, he posted new test results for his gluten-free cookies. He says this testing is the only one with credibility. I’m sure that’s news to Gluten Free Watchdog. Anyway, he posted the results and he boasted how his cookies were indeed gluten-free and that we’re all wrong.
There was only one problem.
He read his results wrong and the batch he tested (which I’m sure he took the utmost care to select) came across OVER 20ppm. He copy and pasted a ridiculous email to tons of people (many of whom forwarded it to me). When it was pointed out that his cookies indeed tested too high, he pulled the report from the website. It’s too bad someone didn’t take a screenshot. [Insert evil laugh here.]
Bart…that’s twice you’ve been busted and yet you’re still too pigheaded to remove your cookies from the market. I implore everyone to hit him on Facebook. The FDA will take care of the rest.
Bart…I’ve honestly tried to give you every opportunity to do the right thing. Now…you’re going down.
A Celiac Pill
“The ALV003, as it is known, is made up of two gluten-specific enzymes that break down gluten into safe-to-digest fragments that don’t trigger an immune response in celiacs. The pill isn’t yet on the market, but the results of a proof-of-concept study were promising.”
I’ve got a few concerns about a pill for celiac. 1) When we can have a natural treatment, why would I want to put a drug into my body? 2) I honestly think this will give too many celiacs carte blanche to cheat. That is not what the purpose of the pill is. 3) Can we really trust the pharmaceutical companies?
Dr. Oz Gets Grilled
Watching Dr. Oz trying to defend himself in front of congress was the most fun I’ve had in a long, long time. Dr. Oz…you’ve had a good run. You’ve made tons of money. But you’ve become an absolute joke and nobody believes a word you say anymore. Heck…I’m not sure if you believe what you say anymore. Go back to doing what you do best…being a doctor and saving lives.
I’m Looking for a Mission
While I love being a strong advocate and I will always continue doing what I do here, I also think there is more for me to do for this community. Something big. Something important. So I’m looking for a gluten-free mission. What challenge/project can I take on that would help you the most? I’m open for ideas.
Ok folks…that’s it for today. As always, thanks for hanging with me.
GD
My thoughts on the pill. I wouldn’t take it to cheat, but I would take it when I eat out as an extra precaution.. I will have to see the side effects and if it conflicts with my other medications (i have had 2 kidney transplants so my body is FILLED with chemicals!)
That’s *precisely* what I envisaged, Alex; I eat in my local Indian restuarant. They tell me (and I trust them) that the food is gluten free, APART from the naan bread. I don’t order the naan bread, so I’m OK, but sure, there’s a risk of cross contamination. As things stand, I’m fine, but if the pill was there and acted as an insurance policy in a restaurant i wasn’t familiar with, then surely it’s a good thing.
Let’s say a fellow celiac goes to that same restaurant and because they took “the pill” they decide to go for the naan bread. Doesn’t that make it more difficult for you because the staff may take it less seriously now? Maybe…maybe not. Just a thought and a concern.
That’s very very very very true. And that’s where I’d be hoping for them to have 48 hours sitting on the can ahead of them 🙂
I am in the middle of a Celiac Disease clinical study with that pharmaceutical company. I have not started taking the pills yet, but am scheduled for an endoscopy next week. After that, I will be given the pills or placebo to take. Would you be part of this study if you were me? I am getting a little nervous about continuing!
Just avoid naan bread, you’ll be fine 😀
The pill won’t give enough protection to let someone order the naan bread; it only works with small amounts. However, it’s possible that the pills being developed might let someone take a couple bites of the naan with no consequences. And if that’s the case…what’s so bad about that? As long as people avoid the ole “slippery slope,” it’d be perfectly fine, and a much nicer, easier way to live. We’d get to sample things again, and the first bite or two always taste the best anyway. I dunno, maybe I’m turning into a shill for Big Pharma, but to me the pill sounds fantastic.
Nice roundup, and good luck again to Mrs. Dude! Summer is a good time for a new mission…hope you find one.
Ellen, did you read the informed consent form very thoroughly? It should tell you all the risks you’re taking. It will be up to you to decide if the risks are worth it. I would participate depending on how sick I expected to feel based on the gluten they’ll require you to eat and also depending on if there were any expected side effects of the pill.
Kara/Ellen, FYI, the current Alvine study (which I’m also participating in) does NOT require eating gluten. In fact, it requires you to stick to your normal gluten-free diet, with the addition of the medication. No cheating allowed.
Hoo boy, getting shillier and shillier…
Yes I know Molly, I am not eating gluten. How far are you in the study? I am just doing the diary right now.
yes, I did read everything Kara. Just a skeptic when it comes to medication.!!
My daughter was diagnosed nearly 2 years ago. She is 21 and wants to travel more than anything. She does okay in big cities like New York and good ski resorts like Vail and Whistler but travel abroad is a huge challenge so she hasn’t left Canada/USA. With this pill, she will be able to order food with no apparent gluten yet be protected against cross contamination. It would be a godsend.
As for Celiacs in general, wouldn’t it be nice to go out with friends and not have to go through the drill with the waiter/manager/chef and just order carefully and take a pill in case?
Finally, my wife has worked for Pfizer for 15 years. They are in business to make money. If their medicines don’t help people, they don’t make money. So yes, I trust them Dude.
Travelling abroad is sometimes easier than within the US or Canada. The level of awareness of Celiac is high in countries like England, Ireland, Australia and New Zealand, and I’ve had really good experiences there. Non-English speaking countries are admittedly a bit more difficult, but doable.
I had great experiences in France. I’ve heard that Italy is another great safe spot.
Traveling in Europe shouldn’t be a problem at all. I live in the Netherlands and have only good experiences in restaurants here; staff are well-informed and go out of their way to be accommodating. Italy is paradise: often restaurants post “celiaci” menus alongside their regular ones. We did not run into a single restaurant where they couldn’t (or wouldn’t) accommodate my needs (plenty of gluten-free pasta, by the way)). Portugal and Spain were good, too: their own cuisines (lots of fish and fresh vegetables) are pretty much naturally gluten free. Until last month I would have said France is a big problem, but on a recent visit to Paris I had no trouble at all: delicious gluten-free Herve macaroons (I ate far, far too many of these!), buckwheat crepes and good restaurants where they were willing to adapt any number of dishes (ah, choice!). (But, of course, having said all this, there is always going to be a risk of cross-contamination in the kitchen – just like in the US). Problem items: the food on the airplane and snacks/fast food. And hotel breakfasts (sometimes). Hope your daughter won’t stay at home because of celiac…
Margaret,
I want to come visit you sometime! 🙂 You sound like my kind of gal. We’d be fighting over the macaroons. lol
People report excellent experiences in Ireland, England, Italy,
Spain, Portugal, Croatia….and I think it is easier in Europe than here.
As soon as I update my passport, I’m making plans.
Do come! My impression is that Europe IS easier than the US (overall). For one thing, Europeans are not as likely to jump on the bandwagon of the latest diet fad, so there isn’t any eye-rolling in restaurants (plenty of misinformation in the newspapers, though). And the good old European Union (much hated for its bureaucracy and over-regulation) is actually functioning as a excellent watchdog on the gluten-free product market. So there are plenty of good things and no reason for anyone to be fearful of traveling this way…aside from the cross-contamination issue and the problems on the flight (just bring your own food, who would want to eat the stuff they serve as “gluten-free”? My last meal on a trans-Atlantic flight was salt-free, vegetarian, sugar-free and gluten-free, all served as one gross, utterly horrible-tasting meal. Even the flight attendant was embarrassed to be serving it).
By the way, IH (and a bit off topic): I loved your comment: if it makes you sick, don’t eat it. I have cut out all gluten-free products (except for an occasional g-f sandwich) and feel better than I have in years.
Margaret,
I know to some people that line may sound rather “wise-ass-y” (I think I just made that word up! lol) but I mean it sincerely. Many people think “hidden gluten” is making them sick. I used to think that way at the beginning–until I realized–this is not what makes the vast majority of us continue to have symptoms or to feel unwell in general.
Often it is other food intolerances or additives like MSG or food dyes or maybe nitrates. I also have HIT–an intolerance for foods high in histamines which includes soy, tomatoes and processed meats–so anything is possible. Some people can’t tolerate avenin in oats or zein in corn. Some people cannot eat eggs or soy etc.
In the end, we all have to figure out what may be giving us grief.
I am so glad you are feeling better!!! 🙂
Thanks, IH. (Don’t know if you will see this as it is an older post). I did not mean to imply that it was hidden gluten that was bothering me (in fact, my internist said it probably wasn’t since my blood work was good). Or maybe it was; who knows? “If it makes you feel bad, don’t eat it” really pushed me to start accepting that it doesn’t really matter WHAT was making me sick (aside from the obvious culprit, gluten); there is something in processed foods, even though they might be gf or labelled gf, that was making me sick. Or a combination of somethings. The quality of my life has improved dramatically since I switched to non-processed food and I love the challenge of cooking from scratch (my own mayo, my ketchup!). And – instead of walking through the supermarket thinking can I have this; what about this; is it safe? etc, etc. I think “poor people who are eating this stuff.” (Eating whole foods and non-processed foods has been mentioned often in other posts – in my case the improvement has been dramatic.)
I was just speaking generally, margaret (about the hidden gluten part) to illustrate that often it really isn’t gluten—but other food items–that make people still feel “off”.
I agree with you completely–whole, natural foods are best!
🙂
I absolutely would not cheat whether there is a pill or not. I would take it if and only if I had some cross contamination issue. I don’t eat out that much, so I don’t get sick. I stay away from pizza joints, pasta places. bread places. I think if people are going to cheat on this pill, then that’s their rodeo. My rodeo is I don’t cheat ever. Even with a pill, I imagine there would be damage going on even if it did break the gluten down. It seems like its like the morning after pill for Celiac disease. To me its only insurance if I accidentally ingest gluten and that’s the only way its getting into me.
It would be wonderful if it worked as a morning-after pill for glutening, but as I understand it, it’s just some enzymes that break down the gluten. That says to me that by the time I’d realize I needed it, it would be too late to do much good. Hope I’m wrong on that.
A lot also depends on how much it costs. If it’s ten bucks a pop, I’d be reluctant to spend that much every time I ate away from home just to be more or less safe. And again, I hope I’m wrong, but I think it only works on small amounts of gluten. So if the pasta dish gets made with non-GF pasta by mistake, it wouldn’t help much.
Another possible problem is side effects. It sounds like it shouldn’t have many, but if it did, that would be another reason not to take it unless absolutely necessary.
I suppose things will become clearer as time goes on. Hope so.
I don’t get it. If you take a gluten pill, why can’t you eat gluten?
Hey Dude,
A mission that’s been on my mind is a charity to help celiac and NCGS people pay their elevated grocery bills. I know some of us are hit by the cost of gf items. Just a spark right now…
Ken, I love that idea. Trying to keep track of the difference in food cost for a tax deduction is too much. Not to mention that the payoff likely wouldn’t be worth it. Let’s make this happen!
I was thinking more of a mission that took no more than five minutes of my time. Totally kidding…good thought Ken.
5 minutes? I’m so disappointed in you! Mrs Dude should qualify for at least 15 minutes of you being a good supportive BRA 😛
If you’re going to be a boobie supporter at least do it right, dinner, candles…
I’m surprised you have 5 minutes to spare.
Happy Brithday Dude!
Re the coeliac (celiac) pill? I don’t think it’s a bad idea. I’m diagnosed 2 years and living well, but if taking a pill once a day meant that, say, tiny amounts of gluten – say the amount you’d get from accidental cross contamination – didn’t cause a problem for us, then I’d say that’s a good thing.
Sure, I don’t envisage a day that I can buy regular bread, or eat Oreos any time soon, but…y’know! Point taken on people who’ll ‘cheat’ but y’know, that’s their lookout; if the pill doesn’t work after they wolf down a box of regular breakfast cereal, then chances are 48 hours on the can should get ’em seeing the error of their ways.
As for trusting pharma companies…aye – i’m with you there! 🙂
Sending love and healing energy to Mrs. Dude and I will definitely be sending super-prayers on July 3rd.
June 22nd is my mom’s birthday. She lived a long, adventurous and healthy life, stepping off at almost 97 recently. June 22nd is good day, GD. You’ll have a long run.
Melissa
June 22 is indeed a good day Melissa. Thanks!
Thank you Melissa!!!
The start of each day is checking your blog each morning. I was happy to see you had the time to post. I get concerned when you are absent for fear of Mrs.Dude health. She will do fine, my daughter did the six week of radiations also and it does make one very tired so you be sure to take good care of yourself too so you can be 100% for her. Be extra careful not to get glutened while in NY and have a blast with Mrs. Dude.
I have no words left for Bart. He is a lost cause because of his greed at the health of celiacs.
You and your family remain in my prayers. All the best Happy birthday Dude and gentle hugs for Mrts. Dude
Gluten Dude,
My continued well wishes on your wife’s health, I really hope for a fast and painless recovery.
I would use the pill to cheat, honestly, I would. Or at least I think I would. I don’t know, I’m really good at not cheating on purpose and I’ve had very few accidents in the last 3.5 years. So maybe I wouldn’t but maybe I would use it for special occasions when I don’t want to be rude or not eat even though I would still try not to eat gluten. I just get so damn tired of asking especially at weddings and stuff. All the sudden I have all this unwanted attention. It kind of sucks.
Congrats on your daughter graduating. Did you cry? I have at the last two and I have one left but her graduation isn’t for another 3 years. I will cry hardest at that one I think since she will be the last one.
Have a great day,
Dana
Forgot to tell you early Happy Birthday! 🙂
Dana, thank u for your kind words. Xo
I wouldn’t use the pill to cheat, but I would definitely use it in situations where cross-contamination would be an issue. I’ve heard a few reports that side effects are minimal so that part is also promising. Our biggest challenge may be the cost. I hope the trials continue to go well so maybe we will get some more options. And as much as I hate to say it, getting the pharmaceutical companies involved might help to shift the medical community’s perception/treatment of celiac and gluten related disorders in general. When there’s a drug available to treat it, the diagnosis rates will probably go up. Money makes the world go round….. 🙂
Keeping you and your family in my thoughts and prayers and wishing Mrs Dude a speedy recovery. And Happy Early Birthday!
Regarding the pill…from what I’ve read, the plan is for it to help prevent intestinal damage resulting from cross-contamination and incidental ingestion. I’ve heard anywhere up to 65% of celiacs still have intestinal damage while on a gluten-free diet simply because of how hard it is to avoid cross-contamination. This pill would help with that, but would not be a go-head to eat gluten. Although our actual remedy is to eat gluten-free, eating 100% gluten-free is MUCH harder than it sounds at face value (which I know you know), and wouldn’t it be great to not have to worry so much about getting glutened?
And can we trust pharmaceutical companies? It’s not a matter of trusting the pharma companies as much as a matter of trusting the FDA. The FDA does the review and gets the final say on whether the drug is effective and safe. I am actually a biostatistician who works in clinical trials, helping pharma-companies get their drugs FDA-approved. In my almost 7 years of working, I have never had a drug I’ve worked on get approved. So I can tell you, the FDA is picky. They have a lot of requirements and rules. On the other hand, they are humans, and they will make mistakes. So could you trust the pill? For me, I plan to read the results of the trials leading up to the drugs’ approval (if it gets approved) to determine whether I personally think it sounds safe and effective. But from what I’ve read, it sounds like the difference the drug made for celiacs in its current trials was pretty significant.
Oh and happy birthday 🙂 and thank you for the update on Mrs. Dude. You have a tiring road ahead. Take the time you need for your family and don’t worry about the blog too much.
so Kara, I am in the beginning stages of a Clinical study for this pill, having an endoscopy next Wednesday, then after that will start taking the pills. I am getting a little nervous though, since I am usually so sensative to medications. What is your opinion? Would you do the study? I am considering dropping out? I will have to have 2 endoscopy’s!
Did they tell you the side effects of the pills in the informed consent? I saw in another comment that you do not have to eat gluten, so that is great. It sounds better to me if you do not have to eat gluten. Two endoscopies does stink, though. Hopefully you’re being adequately compensated?
If you’re worried about the drug bothering you, just try it and then drop out if it bothers you. The information gained would still be important to the pharma company and the FDA. They want to know if the drug is well-tolerated, and if it is not, then they may need to work on a reformulation of the pill. So even if you take it and it bothers you and you quit, you’re still helping them with their research more than if you never tried the pill at all.
Consider your participation in the trial as taking one for the celiac team. 🙂
yeah, you’re right Kara. They are paying $975 if you go through the entire trial. It will be worth it, I just don’t like to have 2 endoscopy’s. They don’t tell you the results of the 2nd endo. I’ll just see how it progresses once I start the medicine. Thanks for your input!
They don’t tell you the results of the 2nd endo?? That doesn’t seem right. :/
Sure thing, glad to help!
it’s a secret, even the Dr. doesn’t know the results!
I think a worthy mission (for us all ) is making sure that there are shelf-stable GF items in food pantries. Many of us can afford groceries, but some people simply can’t. Also, natural disasters often deplete the shelves of everything, but families that could really use the GF items are often forgotten. Just a thought.
You already know I send my very best healing vibes and loving support to Mrs. D, but I’ll say it again: She will kick cancer’s ass
and you will all be all right. Big hugs.
Congrats on the other “milestones” in the family. My Dad’s birthday was in June and he was an awesome man.
P.S. I personally don’t think you look your age at all!! You certainly don’t act it…and in person, you look a while lot younger than 63. So, enjoy! 🙂
63? That hurt. 🙂
ah, you know I just be a joshin ya.!
You don’t look a day over 49.
I agree with Ivan. I would never take the pill to cheat but what I got from the information is that maybe the tiny unavoidable amounts of gluten we inevitably run across wouldn’t be able to wreak so much havoc on our systems. I’m super sensitive to cross contamination, I was subjected to cross contamination somewhere last night despite being uber careful and only having eaten certified gluten free foods. It could be nice to know that there is medicine that would be protecting my insides on those occasions. I don’t like taking medicine unless I have to so it’s TBD if the benefits outweigh the risks.
Shame on Bart!! That he’s willing to hurt people to make a profit is despicable, it should be criminal. Let’s take him down. The right thing was to give him every opportunity to make it right, everyone has done that and he refuses to admit that his cookies are unsafe. ….could he not just admit his error and change his processes to make his cookies safe??? Honestly, he reminds me of my abusive (narcissistic) ex-Husband at this point. He’s always right and if you dare suggest he isn’t right, isn’t perfect, is any way flawed he become extremely defensive and will do everything he can to discredit/ruin you. I don’t think he’s made a website about me yet….
Awesome news about Jennifer’s bakery shipping nationwide!! I can’t wait to try some. I’ve been envious of those who could just wander into her shop to try her goodies. She was one of the first voices for Celiac I found after being diagnosed and I so related to her story, thank you to her and to you and others for sharing it so we don’t feel like we’re so alone in this.
Lots of updates, glad to hear you and Mrs. Dude are getting away this weekend. Happy early Birthday and hope you have a good trip!!
That curve ball called life got thrown at me. I’ve juggled, caught and dropped and a few. Your life in a nutshell post has helped me to catch up on what I’ve missed!
The one, and most important, thing I want to comment on is Mrs. Dude. Add me to the many who will be sending a big bundle of love and hope and good wishes for ease of treatment and a quick return to good health for her!
Congrats on the graduation! We give them roots and wings; she’s going to FLY!
As for a mission? I would really, REALLY like to see a celiac panel added to standard blood work screenings. I believe in Italy that testing begins in childhood? Why can’t we do that in the US? It’s a blood test and they’re already drawing blood…
I hope Ms. Dude gets better, soon.
Wonderful news regarding Mrs Dude & the Dudettes! Mrs Dude & your family are daily in our thoughts & prayers & will continue so.
Great news about Jen (and the Seidenbergs) – what a woman!
Agreed on World Cup – I actually watched some games & didn’t even fall asleep yet – along with CWS 2014 & the Spurs – lot going on.
Happy Bday! Video was hilarious! Have a marvelous weekend with Mrs Dude. Please eat something great for Hap in NCY.
CONGRATS & best wishes to Dudette the Graduate! Loved the daughter date night last week – I only thought I wanted a son until our daughter showed up!
Bart – take him down before he hurts more people – you’ve been patient & he’s had enough chances to do right. Go FDA too!
Dr Oz – glad you noticed & you gave the Doc good advice. I’m sitting on my hands to keep from typing more about Bart & Dr Oz.
No pills for me – I don’t even take aspirin. What’s wrong with good healthy food & exercise (and maybe a little blue agave vegetable juice and liquid corn by products for medicinal purposes and pain management occasionally).
As to “the mission” after this blog post & everything else going in your life, we’ll have to change your moniker to “Super Gluten Dude” (maybe not spectacular enough) – but you know we’ll support you 100%. If CD was not enough to slow you down, we could tie another arm behind your back – you must have been something else before bladder cancer, PE & CD!
Happy Birthday & many more!
Hap
Hey, Dude… So glad to see (from what I read between the lines) that Mrs. Dude doesn’t need chemotherapy. It literally nearly killed me when I had it. There is a great lotion called Alra that one of the best breast radiation oncologists in the world recommends to keep radiation burn down. I used it all through radiation and scarcely had any skin-related radiation side effects.
As for the celiac mission… IH (as always) took my idea. But I also think there is need for a celiac response team for natural disasters (I know there was a need for that in Joplin, MO a few years back). If you like that idea and you want help with that let me know. The social worker in me is always looking for the chance to jump into action. I will be in Nebraska permanently beginning in August so I’d be centrally located for tornado disasters…
Can you explain the numbers that Bart misread? I’m one of those that got his email, but still didn’t believe his numbers. So I’d like to better understand why your calculation is accurate.
Best wishes for Mrs. Dude and daughters. I’ve been down that path with my own Mrs., and daughter who also found recently she does not possess the marker. My wife is now nearly 19 years cancer free. She has to support my Gf and diabetic diet, for which I’m grateful. Thanks to you, Jennifer and many others who do what they can to promote the GF diet that do many of us rely upon for healthy living.
Read this on my phone, and couldn’t read the fine print, but read it again, so figured it out on the reading. Poor Bart, he may not get it, but it is pretty clear, it isn’t GF.
I think Bart probably read the numbers okay, but he apparently didn’t read to notice at the bottom of the report, which says that the gliadin number has to be doubled: “Approximately 50% of the gluten is available as gliadin. Therefore, to calculate the gluten value of the samples, multiply the ppm gliadin results by 2.”
This is because gluten is the combination of two things in wheat, gliadin and glutenin, which, as dough is worked, come together to form gluten. The test apparently measures only the gliadin component, and apparently gliadin and glutenin are about the same weight, so you have to double the number to get the gluten content: 11.8 x 2 = 23.6.
The LOD number (2.5) presumably is “limit of detection”, meaning the test can’t detect less than 2.5ppm of gliadin, or 5 ppm of gluten.
Sorry, A, didn’t see your response until after I’d posted mine, which probably was in the category of “more than you want to know about…” anyway.
A mission? I would LOVE it if you could create a ‘bank’ of sorts for people to recommend doctors, nutrionists, etc. Who have knowledge of Celiac state by state. I’m having a very hard time finding knowledge people in NC. I’ve done A LOT of research too. I’ve sent a note to message boards, Northern Hospitals, asked my support group and have come up empty handed. Thanks!
That is exactly what I was thinking about as a mission idea. We all have the doctor horror stories (I even had one tell me last week that he didn’t believe that fatigue and symptoms other than gastrointestinal were caused by the ingestion of gluten. He said that people Google too much on the internet). Since I’ve had so many frustrating experiences, I would love to have a resource to turn to that includes experienced, knowledgeable professionals who do know how to treat patients with these disorders. I would also like to see a database that is listed state-by-state, if possible. This may include physicians, specialists, nurse practitioners, naturopathic doctors, or other qualified professionals. It would be nice if it was based upon positive patient reviews, so that it wouldn’t become too commercial or that it doesn’t become a negative bashing site. Great idea!
P.S. Happy Birthday GD! Tell Mrs. D that everyone will be praying for a fast recovery from her surgery.
THE NFCA has a database of doctors and hospitals that treat Celiac.
http://www.celiaccentral.org/Resources/Links/Hospitals-Labs/121/
Thanks for the link. There is some good information there. I guess what I was thinking about was a more grass-roots type website (kind of like this website) that may include doctors who don’t necessarily work at a large hospital (although they would be welcome) or specialty facility. There have got to be great doctors who work in rural areas, high-poverty areas, or off-the-radar offices that have the knowledge and skills to treat or at least recognize the many issues associated with Celiac disease or gluten intolerance. A resource to help those who don’t have the money to travel to the better known facilities. I would love to find that hidden jewel in my community and give them the positive recognition they deserve. Thanks again for the link. It is definitely somewhere to start.
“There have got to be great doctors who work in rural areas, high-poverty areas, or off-the-radar offices that have the knowledge and skills to treat or at least recognize the many issues associated with Celiac disease or gluten intolerance. A resource to help those who don’t have the money to travel to the better known facilities”
Hon,
Seriously….the vast majority of mainstream docs–even excellent top-notch gastro docs and pediatric gastros too– have no clue about celiac. That’s why these are ‘specialty doctors”.
Yes, it would be great to have doctors in rural areas, etc.
but this is not anyone’s GI specialty yet because until the last 10 years, it was not even on anyone’s radar. It was considered a “rare childhood disease” until recently.
This is why it takes an average of 12 years to get a diagnosis!.
Understand what I am saying?
Have you read Gluten Freedom by Dr. Fasano? It may explain a lot about how the disease is finally being recognized for the health hazard it really is.
Your idea is a good one, but there are not enough doctors who are celiac-savvy to fulfill those roles.
Someday maybe….
No, I have not read Gluten Freedom yet, but it is at the top of my list of books to purchase.
Jennifer,
I was thinking about this last night and I would like to add that a good celiac doctor does not have to ‘specialize’ in it. My GI guy did not intend to be an expert in celiac patient after care–he just sort of fell into it because he was the one guy in the practice who took the disease seriously. I found him after asking on the celiac.com forum if someone could recommend a good doctor in the Albany NY area–which is where I used to live–and luckily, someone saw my pleas and answered me. Once I became his patient, he got many referrals from me. I have kept him as my doctor and will see him when I travel north in August.
So, please don’t think there aren’t any good docs out there who can help with CD after-care…you just have to look for them. One suggestion is to contact a local hospital or celiac support group and ask who their advisor is. Another is to call gastro practices and ask if anyone takes an interest in celiac patients.
I hope you all can find a good doctor to help you.:)
The one I had been going to missed the diagnosis completely and I went to him for 12 years and he was considered the “top guy” in the area. He wasn’t the best after all.
I probably worded my original post poorly. What you describe is exactly what I was talking about. I would love a resource that lists all/any doctors who get it. They could be your regular family practice doctors…the doctors who believe/know that these are real symptoms that have real consequences on the people who are having them. I know that they may not be the experts in the field, but they could be that stepping stone to a real diagnosis and further education for their patients (without having to wait another 2…5…12 years to figure it out). I am looking for that good doctor (I have a good family doctor who supports me, but she was asking ME questions about gluten because she discovered that her husband cannot tolerate it) and an online informal database was just an idea that popped into my head even if it is not a probable reality. Thanks again for your input. I ordered Dr. Fasano’s book today and look forward to its arrival.
Well, it could be a reality. Maybe GD could keep a running list of docs that people recommend.
He’s on his bday weekend in NYC right now, but when he gets back, he can think about this. 🙂
I live close to Duke, UNC and Wake Forrest. I can’t even find a doc at those locations. Pretty sad. No one in my support group can recommend anyone in NC and many were diagnosed a long time ago. So a site for places other than the major hospitals up north would be awesome!
where do you live? I am in NC and can help in WNC.
First time posting to your blog…thank you for writing it! Prayers for Mrs. Dude and an early happy birthday! I have an idea for your mission…something that I have been thinking of trying to do. We are a family of 6 and 4 of us are confirmed celiacs (me and 3 of my 4 kids ages 7,8,12,13-the youngest is still gluten as he calls himself). I would love to have summer camps/programs for celiac kids. I know there are a few camps in the east and a couple in the west but they have preference to kids from their area and there are so many kids that just want to feel normal for once and have fun-a gluten free camp would do just that! Just my own selfishness of trying to help my kids I guess but I bet there are others who would love to give their kids this opportunity. Maybe some day 🙂
Thanks again for all you do especially right now when dealing with the ugliness of cancer…along with your regular family/work duties!
First of all, thoughts and prayers for Mrs. Dude. And congratulations on your daughter’s graduation.
As far as a gf cause, the thing that gets me most is folks who need to eat gluten free but can’t afford to buy food. (Especially sick kiddos.) Some food pantries do supply gf options for people who are confirmed celiacs, but I’d love to get involved in making sure access to gf options is expanded for the folks who really need it. And since food pantries often focus on shelf-stable items, which often contain wheat, I think this is a huge deal.
I am thrilled to hear about this pill. No, it wouldn’t mean slamming gluteny pizza to my face (diagnosed gluten intolerant 7+ years ago, re-diagnosed Celiac almost a year ago,) but I would definitely take it to avoid cross contamination!
Happy Birthday! I’ll be in NYC myself this weekend and can’t wait to try out Jennifer’s Way.
Sending lots of positive thoughts and vibes to Mrs. Dude.
The “celiac” pill ALV003 is something I’m hoping desperately for, by that I mean a pill that can mitigate cross contamination. There is just so much cross contamination making travel, eating at friends houses, and basically buying any goods , even certified ones, that such a pill would be so liberating especially for those with extreme sensitivity like my 5 year old. While the natural treatment of the GF diet is of course preferable , the food supply is just too contaminated to ever truly be safe, IMO
Agreed, Daniel. Our food supply and manufacturing processes would have to be completely overhauled to truly be safe for celiacs. Since we are in the minority here, I don’t ever see that happening. That said, we are still responsible for knowing what we’re putting in our bodies and eating the healthiest food we can regardless. The pill would just allow us a little more normalcy and I’m all for that.
GD-
As a chic (and mommy of a lil’ chic)) I would be ecstatic that the genetic markers were absent. Freaking awesome. Cyber pass you and Mrs. Dude a double of Tito’s.
Bart is a freaking idiot.
Wouldn’t touch “the pill”. Ever. Just another way the pharmaceuticals can have a hand in our early demise.
Congrats to your daughter, she obviously has been raised by two great parents.
XO-
Jersey Girl
——————————————————————————–
Jerry: “To me, the thing about birthday parties is that the first birthday party you have and the last birthday party you have are actually quite similar. You know, you just kinda sit there…you’re the least excited person at the party. You don’t even really realize that there is a party. You don’t know what’s goin’ on. Both birthday parties, people have to kinda help you blow out the candles, you can’t do it…you don’t even know why you’re doing it. What is this ritual?”
Seinfeld
First, thoughts and prayers to you and Mrs. Dude and the Dudettes. Second, a mission, which may be silly b/c I’m not even Catholic, but: request/convince the Pope to sanction gluten free communion wafers. He appears to be such a reasonable man that it seems like he could start looking into that. And third, I just posted a civil comment on Bart’s FB page. I am sort of a FB Luddite, so if I get flamed I might need your help!
Love this blog and the conversations in the comment section! I have a 15 year old daughter with celiac, took her on spring break in April and we were super careful regarding her meals, I researched the heck out of everything….she still got “glutened”!
Its been 2 months now and she is finally starting to feel better! I would give her that pill when traveling, for sure!
Prayers for Mrs. Dude. I, too, have had breast cancer. Mine was treated with a partial mastectomy and radiation. Please tell her not to fear the radiation. I’ve had worse sunburns. She can expect to be extra tired… give in and take naps! I have been cancer free for 9 years and I hope she has as good an outcome!
OMG… that video is high-larious! LOL!!! I’m absolutely going to be sending that out to upcoming bday folks on my calendar. 🙂
Good luck to Mrs. Dude!! I am so glad to hear the good news on her results! 🙂
As for the pill, I’m not afraid to say I’d take it. I’m on enough meds as it is, what’s another one?
First of all Ms. Dude and your entire family are in my thoughts as you continue forward in the battle with cancer!
Next I want everyone who might be considering the new pill to really think about waiting. Many years ago, before being properly diagnosed with Celiac I was given Zelnorm, a pill for IBS. It was relatively new on the market but I was anxious to receive any relief from the pain and other problems. Anyway Zelnorm was taken off of the market due to long term side effects, mainly those effecting heart. http://www.medicinenet.com/script/main/art.asp?articlekey=80152
Third, I think assistance with groceries is a good idea, but I have another problem and maybe I’m missing something. How about some sort of help for those who lose their job due to illness? Before I was properly diagnosed with Celiac I lost my job, short term disability ran out and unemployment has been denied (they say that technically I wasn’t fired). Where can someone in this situation receive help in order not to lose our home? Those in this situation didn’t ask to be sick and we’re trying everything possible to work (I spend my days applying for work now). I don’t want a hand out, just something to help me keep from losing our home until I am employed again. I’m sure there are others out there in similar situations, so what have you done?
Lastly…have a fanstastic birthday…love the video!!
Heather
I just noticed something weird – there appear to be two Bart’s best cookies ever companies:
This one with a guy named Bart Smith: http://bartscookies.com/
And Bart (Greenhut) and Judy’s: http://www.bartsbakery.com/
And they both sell gluten free cookies. Is Bart Smith a different guy entirely or just Bart Greenhut doing business under a different storefront? Their packaging looks different and the companies have a different phone number.
Although GD linked to the correct facebook page, people were posting comments on Bart Smith’s facebook page about the Bart Greenhut fiasco.
Mission idea: get clear gluten labels for medications. I don’t know how you would do it, but if anyone can, it’s you!
GD, Congratulations on thw wonderful news for your daughters genetic testing! Your family must be over the moon excited with that outcome. Will continue hold blessings and healing wishes for Mrs. Dude as she goes through the process!
Loved your comments about Bart! Doc Oz! and your thoughts about the GF pill! Sadly, from the comments on this item we shall be seeing more of this in the future. For me personally – no meds for this condition. I have seen too many people medicate their symptoms from too many conditions and suffer from the effects of all the meds! If diet is the culprit to symptoms and changing the diet resolves the issues – then change the diet! There is so much science on this condition that still needs to be resolved. That is where I would like to see the money and energy be spent.
Hope you have an Amazing Birthday and celebration allround! There is so much to celebrate!
My thoughts and prayers go out to Mrs. Dude, and glad to know that your daughters don’t have to worry about the gene marker for breast cancer. Thanks for recapping, it was all very interesting. I also think for a mission would be lobbying that prescription drug companies have to test for gluten. And a huge mission, one dream I had: make all restaurants have a gluten free dedicated area for certain items on the menu.
Happy Birthday GD! I’ll raise my glass to you on Hawaiian time!
First if all my thoughts and prayers to Mrs. Dude and the Dude family.
Lately I’ve come across really well done documentaries about bi-polar disorder, dyslexia, lime disease etc and it occurred to me, what is missing is a documentary about celiac disease and NCGS. Interviews with real people, sharing their experience, of life before diagnosis, life after, what happens when getting glutened and so on, as well as sound medical info on what it is and what it does. I know that is not what you meant by a new mission but it’s really something I think would be really educational and night really open peoples eyes. Maybe you could put a bug in someone’s ear…. 🙂
Theresa, I agree with you the best thing is to educate, educate, educate. Scientific testing can be manipulated by the funding behind it but the average guy (or gal) on the street has nothing to gain by just being honest. I know the naysayers will try to say it’s the placebo effect but for people like myself who had visible skin issues, you can’t deny that a change in diet made a difference. I know this might seem off topic but we are ALL affected by the food we eat, whether or not celiac disease or NCGS is involved. In Monday’s issue (June 23rd) of TIME magazine, there will be an article about how we have been misled for the last 40 years about the supposed benefits of a low-fat diet (the cover says “Eat Butter”). Also, in May the state of Vermont passed a new labelling law which would require manufacturers to indicate if their products contain GMO’s and now, on June 12th, a lawsuit has been filed by the Grocery Manufacturers Ass’n, Snack Food Ass’n (didn’t know there was such a thing!), Int’l Dairy Foods and the Nat’l Ass’n of Manufacturers against the State because they don’t want such transparency. I think we need a grass roots revolt of some sort to make good, clean, wholesome food more affordable for everyone. I’m Canadian, however, so my “mission” is the same for here. For other Canadians who might be interested, there is an “initiative” in Prince Edward Island to make the entire island all-organic. It will be a hard sell to make that happen but how cool would that be! Again, sorry to be off topic. I know that celiac disease awareness is a separate issue but we all need good food to survive and be healthy.
….further off topic, perhaps, but I have never stopped eating butter.
It’s a good fat. Julia Child ate tons of it and she lived to be nearly 93.
…my grandfather too…and bacon…lots of bacon.
“You can take my Kerry Gold Butter when you can pry it from my cold dead hands.”
🙂
(for you Canadians and young ‘uns… that’s a play on the famous quote by Charleton Heston)
mmm bacon! and given the choice between a chemical substance made to replace butter or using real butter, give me butter any day!
Theresa, you’re my kind of girl. 😉
“Why, yes.. I would like a burger with my bacon!”
— John Pinette (Twitter Feed 2:16pm – 17 Dec 13)
[IH – thanks for John Pinette – I’ve laughed for hours watching his videos. I’m with you & Theresa & Butter]
A gluten free mission: getting gluten free food to those who need it but can’t access it. Like people stationed overseas with the military, people on food stamps who still can’t afford it, homeless shelters and food pantries, more schools (especially those that have huge populations of free and reduced lunch) students.
If I had the ability this is where I would focus my resources!
Happy Birthday Gluten Dude! I’m sending best wishes and prayers for you and your family. If there was one aspect of celiac disease that I would focus on for a mission, it would be the psychological aspect of the disease. I have been working through a lot of depression ever since being diagnosed. It is hard to talk about with people because most people who don’t have celiac disease believe that the disease only influences the digestive system. I would like to help people understand that celiac is a system illness that affects a person’s body in many complicated ways.
For example, a few years ago I did some research on the effect of untreated celiac disease on pregnancy. I learned that women who have untreated celiac disease can suffer severe consequences during pregnancy. Researchers have found that anti-transglutaminase antibodies (the antibodies formed as a result of celiac disease) might prevent proper functioning of the placenta (the placenta contains villi that are very similar to the villi found in the small intestine).
I’d like you to look into gluten in wine – I kid you not.
I spent a number of years being glutened by something. It never occurred to me that it could be wine.
Gluten is used to fine wines, in place of more expensive ingredients. In addition, wheat paste is often used to seal barrels. Wine that is aged in stainless steel tanks is often safer, but might still be fined with gluten.
There is an academic paper going around that claims to have tested wine for gluten, and to have found the remaining gluten is below 20ppm. My guts attest to the fact that wines differ in the amount of gluten they contain – all brands would need to be tested.
What really annoys me is that there is absolutely no way to tell which wines have been in contact with gluten. I took the trouble to write to a good number of wine producers, to ask if their wine was produced in contact with gluten – NONE responded.
Advice being given to celiacs is that wine is perfectly safe – this is simply not true. My wine drinking days are over until wine producers can be pressured into being honest about their use of gluten.
Follow this up and I’ll raise a glass to you Dude!
May I suggest that maybe you just cannot tolerate wine anymore?
It is loaded with histamine and a histamine intolerance can give you symptoms reminiscent of a glutening. (I know; I have it and have to watch the levels of histamine in the foods I eat and the wine I drink) 🙁 Maybe you have a problem with sulfites?
Some wines are specifically labeled “GF”. maybe you could try one of those and see how you feel?
Every celiac researcher says wine is safe for celiacs.
Articles abound explaining how wine has been tested and the levels are <5 ppms. Here is just one:
http://www.glutenfreedietitian.com/newsletter/wine-aged-in-oak-barrels-sealed-with-wheat-paste-test-results-for-gluten-contamination-2/
The vast majority of vinters use stainless steel now.
I assure you, if wine were a danger to celiacs, Dr. Fasano would not have suggested wine with the dinner recipe in his book Gluten Freedom.
And I–along with every celiac I know who drinks it–would be dead by now.
As with anything related to celiac, if it makes you feel bad, don't eat/drink it. Cheers!
Exactly Irish. It’s not always gluten that’s the issue.
RE: ALV003 in clinical trials
(1) “CONCLUSIONS:
ALV003 is an orally active protease that appears to be stable in the fed stomach and degrades dietary gluten in this compartment. Single doses of oral ALV003 were not associated with serious adverse reactions.
All doses were well tolerated, and no serious adverse events or allergic reactions were observed”
and
(2)
“Based on a phase 2 trial, the glutenase ALV003 appears to attenuate gluten-induced small intestinal mucosal injury in patients with celiac disease in the context of an everyday gluten-free diet containing daily up to 2 g gluten.”
http://www.ncbi.nlm.nih.gov/pubmed/21948339
http://www.ncbi.nlm.nih.gov/pubmed/24583059
The intention of this medication is:
“. Despite adherence to a gluten-free diet, many patients remain symptomatic and still have small intestinal inflammation. In this case, nondietary therapies are needed. We investigated the ability of ALV003, a mixture of 2 recombinant gluten-specific proteases given orally, to protect patients with celiac disease from gluten-induced mucosal injury ”
This isn’t a “take this magic bullet and go eat gluten” thing–that’s just crazy to do–but, it is designed as a treatment for people who still have damage in the gut.
Honestly, you can bet your GF butt that if the medication proves effective with no adverse side effects, I would have a script on hand for when I travel.
If it works as an effective prophylactic measure, it would mean I could stop worrying that every trip might be ruined because of an accidental gluten whack. It’s the one thing about this GF life that I abhor–that loss of freedom to eat and enjoy without the constant concern of cross contamination.
Just my humble opinion!
I just got a little flutter of hope in my belly from this. Or maybe it’s indigestion. Hard to tell…
lol Ken. 🙂
I will be getting some inside info on this drug and will present all of the facts as I have them. Looking forward to sharing.
Now according to the Wall Street Journal, Gluten Free is NOT HEALTHY. http://online.wsj.com/articles/how-we-eat-the-gluten-free-craze-is-it-healthy-1403491041 I have a feeling in 2 years Gluten Free will be off are shelves and anyone claiming Gluten Intolerance will be considered Crazy http://www.newscientist.com/article/dn23851-what-if-your-gluten-intolerance-is-all-in-your-head.html I feel most bad for the children. Why is the main stream media so invested in killing off the Gluten Free Diet. I mean Diet Soda drinks contain Aspartame which is dangerous and can lead to cancer http://www.cancer.org/cancer/cancercauses/othercarcinogens/athome/aspartame I see very little coverage against these horrible Diet Soda’s that can give people Cancer and YET Gluten Free is Al Quida according to the Main Stream Media. Does the press have any HEART AT ALL?
Sorry here is the Wall Street Journal Article in it’s entirety http://webcache.googleusercontent.com/search?q=cache:http://online.wsj.com/articles/how-we-eat-the-gluten-free-craze-is-it-healthy-1403491041?mod=WSJ_hp_RightTopStories
It even says “For now, interest in gluten-free remains strong—though there are signs that may have peaked. The share of survey respondents saying they are trying to avoid gluten was 29.4% in May, according to market research firm NPD Group Inc. That is down from a peak of more than 30% late last year, but higher than the 25.5% measured four years ago.” So what can we do? The media is killing off the Gluten Free Diet from Dr.s in Australia claiming Gluten Intolerance is false, to NOW NO HEALTH BENEFITS, Heartless comedians like Jimmy Fallon making fun of people who are Gluten Free https://www.youtube.com/watch?v=rg9fi6ROplI&noredirect=1 I am sure the main stream press will be happy as long as they get there money and hurt people with Gluten Issues. HEARTLESS MAIN STREAM PRESS.