It's a Gluten Dude / Irish Heart Mother of All Mailbags

celiac mailbag

Holy crap am I behind on emails. I’ve got emails from my fellow celiacs sitting in my inbox dating back to October.

Yes…October of 2013 wise-ass.

Between work, the blog, life, holidays, etc., I’m not always finding the time to keep up with my email. Rest assured, I read each and every one of them. I also print them out and am making a wallpaper for my home office.

I made that last thing up.

Anyway…I really wanted to catch up. Your emails are important to me but I knew for this batch, I couldn’t do it on my own.

I needed help.

I needed a Robin to my Batman.

I needed a Clarence to my Bruce.

I needed a Jelly to my Peanut Butter.

I needed…I needed…I needed…IRISH HEART!!

I asked. She agreed. Thanks Irish!!!

Onto the mailbag….

Q: My daughter was diagnosed with Celiac when she was 5 years old. Now she is in 2nd grade, doing great with GF diet. She goes to public school (California) and brings her lunch box from home to school everyday. She asked me if she could have hot lunch from the cafeteria. I called the school district to see if they have any gluten free options. The only gluten free options was fruit and veggies. That’s not a meal. What can I do to convince the district to offer gluten free meals? Isn’t this discrimination?

[GD]: (Hold on…I’m putting my legal hat on. That didn’t do anything. I’m taking my legal hat off.) As far as being discrimination, I’d say a definite possibility of a firm maybe. In other words, I’d say it depends. If you want to fight the good fight, I suggest finding a good lawyer in your area. Maybe he or she will take it pro bono for a good cause. In the meantime, start with the principal and work your way up. Ask if there is anything they can do. I bet your daughter is not the only one in the school who would benefit.

Q: How do you cope with feeling left out? Sometimes I feel like I am left out when it comes to meals @ restaurants or a friend’s house. I get the “It’s not fair” feeling. Grr, any advice?

[IH]: Life isn’t fair sometimes, kiddo, but I do not view this as being “left out” if I have been invited somewhere. :)…Instead, I am thinking “whoohoo! Look at me! I have friends!!”

Honestly, I never feel left out, but I had to make some adjustments in how I viewed this whole thing and how easily my friends adapted as well. My friends and I always choose places where I CAN eat something safe. Also, my friends took the time to learn how to make safe GF meals. I gave them all a flexible cutting board for use in their homes and I help them prep the food so they can check with me if it’s all okay. (It always is!) I also bring a GF dessert or some good cheeses, meats and Crunchmaster crackers for everyone. Bottom line…You are the only who can get past the feeling that this “isn’t fair”, hon, and I hope you can find ways to look at this with a new perspective. If I can help further, just let me know (the Dude can reach me). But you CAN socialize and get past this feeling. I promise you!

Q: I was at a public event today with complimentary refreshments. I grab a cup and tea bag, pour some hot water from the urn and get some sugar, cream, lid and stir stick. Here’s where it got interesting: I could not believe what the stir sticks were made of. They were simply, I kid you not, pieces of dry, uncooked linguine pasta! I wonder if you or any of your audience have ever seen these things.

[GD]: Really? Pasta to stir your tea? With no warning sign? I’m not asking non-celiacs to bow down to us and serve our every need, but a little common sense and common courtesy folks. And this my friends is why we must continue to educate. Just crazy.

Q: I am the mother of the 13 year old that has Graves disease and I am also pretty sure he has CD as well. My question is rather than keep doing the blood work and feeding him gluten to get a positive result, wouldn’t it be smarter to just go through with the endoscopy since he has the symptoms & has Graves disease? What I mean is as long as he is having symptoms, there is damage that is being done…right?

[IH]: Depends on what you mean by “symptoms”. Many symptoms associated with NCGS are also celiac symptoms, so a doctor will want to do the celiac blood panel first. Most docs follow the “blood test first and biopsy second” protocol especially if insurance is involved. This really is a question for your doctor. Best wishes.

Q: I was curious as to whether you would be willing to give me a good rundown on what you eat in a normal day. I’ve dealt with all the typical symptoms of celiac disease for a few years now, and have just started my new diet without gluten and it. is. tough. I feel like my stomach is eating itself from the inside out, no matter how much i eat.

[GD]: Here’s a typical “healthy” day.

  • Breakfast…a bowl of Lucky Charms.
  • Just kidding.
  • Breakfast…3 eggs with organic sausage, asparagus and onion. Piece of fruit. Black coffee. I gave up cream and sugar a few years ago.
  • Morning snack…banana and peanut butter on a rice cake.
  • Lunch…broiled piece of fish with veggies.
  • Afternoon snack…almonds.
  • Dinner…I have no set dinner. If Mrs. Dude is working, I usually just wing it.

If I stick to the above, I tend to feel pretty good. As soon as I get lazy and start eating snacks here and there, it ain’t good. But hey…we’re all human.

Here’s a snapshot of this morning’s breakfast:

gluten free breakfast

Q: My office is STOCKED TO THE GILLS with snacks and food. Of course, most of it is full of gluten. Many of my coworkers eat all their work day meals for free at the office. I can’t do that, so I bring most of my own food and request that a few safe snacks be stocked in the pantry. The problem is, my gluten-eating coworkers can’t resist a Go Picnic or a squeeze pack of pureed fruit. Any tips on how to get their gluten-contaminated hands out of the very few things I can safely eat at the office?

[IH]: Going with the obvious “Keep it locked in your desk” answer here…..but seriously, who in their right mind would actually choose a two-bite Go Picnic hummus cup or edamame packet over a squishy bagel? That’s just crazy talk! 🙂 And since the boss is buying the snacks, slip in a request for some chocolate covered GF crackers and maybe a few New Planets. Just sayin.

I was diagnosed in March this year and am very conscious about what I eat. However, I do not feel totally ok, almost as if I am still getting gluten. I was seeing your pictures about gluten free kitchens and wondered is this really needed? And it got me thinking, maybe this is my problem. I prep food, share everything and use everything that has also been used for gluten products.

[GD]: Not maybe…this IS a problem. All you need is a crumb for your body to have a reaction. You need your own toaster, cookware, strainer, etc. And if you have the room, keep a counter that is off limits to any gluten. The kitchen is where you will get hit. You need to protect it…and yourself.

Q: So I’m kind of pissed and confused. I have been having health problems my entire adult life. I decided to take it upon myself and try an elimination diet and found gluten was my major problem. So naturally I cut it out of my diet. Then I did research and read all about celiac disease. After two months gluten free I finally had the intestinal biopsy and bloodwork done (I re-glutened for a full week prior…HELL ON EARTH). Everything came back negative. My doc said “all your symptoms point to celiac, but without a positive test I can’t diagnose you. If I am “just” severely gluten intolerant (cross contamination greatly affects me) that’s fine. I just would like to know for sure. This wishy-washy bull crap is killing me. How far do I take this? Do I get a second opinion/biopsy? It’s not that I “want” to have celiac, I just want some damn definitive answers, ya know?

[IH]: But you sorta do “want” to have Celiac, otherwise you would not be looking for a diagnosis –and believe me, we all get this part, we really do!! I cannot blame you one bit for wanting an answer. I have met my share of frustrated sick people who went GF before testing and may never know for sure because they simply cannot stand a gluten challenge. (It would just destroy me, so I commiserate fully.)

Perhaps the one week gluten challenge was not long enough? How bad do you want/need a diagnosis depends on how much you can tolerate a challenge of several weeks. And therein lies the conundrum. If re-glutening causes “hell on earth” then I am not sure why you would want to do this to yourself. The treatment will still be the same.

Q: I am 18 and I have been gluten free for 8 months now and life couldn’t be more difficult. Slowly over the process of these months I’ve eliminate dairy, corn, and as of a couple days ago all grains. I am currently in university, and after being starting to feel fantastic the past three months, I caved into eating a couple of tortilla chips. Couldn’t hurt right? Wrong. The past week I have been absolutely miserable and completely depressed. I am also dealing with an undiagnosed eating disorder that is keeping me from getting better. I can’t stop eating which makes the swelling and bloating of my stomach worse, then I feel more anxious about my weight, and I feel like I’m spiraling out of control. I can’t focus in my lectures, and I’ve lost all motivation to do my assignments. I feel hopeless, alone and incredibly out of control. If you had any words of encouragement or tips, I would be forever grateful.

[GD]: It took me a few years to really start to feel better. Depending on the amount of damage to your intestine, you may still be in “healing” mode. As for feeling out of control, there is no worse feeling I know. I could tell you to breathe, relax, try yoga and a bunch of other techniques. But I’m sure you’ve heard them all. Perhaps if you had someone professional to talk to it would help. Hang in there.

Q: I was diagnosed with cd 9 years ago and since then put on 4 stone in weight .I am on a diet at the moment and have lost 2 stone but i know i will put it back on when i come off the diet . I also have an underactive thyroid gland and retain water i am bloated all the time .I just feel like eating gluten to get back to my original weight .My sister is also celiac and has not gained much weight. PLEASE HELP.

[IH]: You may wish to see an endocrinologist. An under active thyroid needs to be treated and if it is, then getting the weight off will be easier. A low-carb diet helps.

Under no circumstances should a celiac eat gluten purposefully to “lose weight”. That’s just asking for more autoimmune problems, destroyed villi, a risk of intestinal cancer among other things…. and your thyroid will never regulate.

Q: I am a pansy, plain and simple. For the past ten or so years, I’ve experienced a nice array of symptoms and I’ve wondered if I have Celiac Disease. However, I cannot bring myself to request the test, as I cannot bring myself to think about life without gluten. I love my pasta, my egg noodles, my bread, my pancakes… everything gluten. Despite the fact that after eating some of this (pancakes are the most noticeable), I feel like complete hell, I can’t seem to fathom the idea of giving it up. What are your thoughts?

[GD]: 3 words: It’s. Just. Food.

Giving up gluten is probably the easiest part of having celiac disease. It’s all the other crap that goes along with it that makes it such a PITA disease.

Q: I love coffee. I mean, I LOVE coffee. A lot. I am a bit concerned that it doesn’t love me back though. There is one area that stumps me and that is the research on coffee and whether or not there is gluten in it, if there is an issue with reactivity due to the body “interpreting” the proteins in coffee as gluten, etc. I Googled to see if anyone else out there had experienced an issue with it but found nothing specific to the brand. I did, however, find a TON of conflicting information on coffee and Celiac/Gluten Intolerant reactions. (Big shocker, I know) So I am reaching out to you. What do you know about coffee and gluten?

coffee is gluten free[IH]: As I am drinking a cup right now, I can tell you without reservation, plain unflavored coffee is gluten free. Despite what some internet sites may claim, these is no gluten in coffee and coffee does not “mimic” gluten nor will it destroy your villi. My biopsy this past August showed “no active celiac disease” ( just some intestinal scarring from years of being undiagnosed which is not surprising).

If anecdotal evidence is not enough to convince you, the leading celiac researchers and dietitians say the same thing: Coffee is safe for celiacs. I cannot find a single Pub Med article that says I should stop drinking it. Going with the “pros” on this one—and enjoying my cups o’joe.

(Dude note: If you’ve gotten this far, bless your little heart. Just a few more and we’ll wrap it up.)

Q: I was glutened by a Godiva martini (bummer) a month or so ago. I went to the Godiva website and it specifically states on their website that NONE of their products are gluten free. Fast forward to Cheesecake Factory gluten free menu featuring, you got it, a Godiva Chocolate flourless cake. Dusted with Godiva chocolate and some say a chunk of chocolate. According to the Cheesecake Factory “it has been tested and verified be gluten free”. Something to think about…are restaurants truly making sure their gluten free menus are really gluten free?

[GD]: The Godiva website does indeed state that “ALL of our products including solid chocolate pieces may contain gluten. Any person with a gluten allergy should NOT consume ANY of our products.” So how does Cheesecake Factory get away with it? That is a darn good question. I am going to reach out to them directly. In the meantime my fellow celiacs…you’ve been warned.

Q: I bought a bag of Mi-Del ginger snaps and the bag says, “Produced in a peanut-free facility that also processes wheat. Mi-Del gluten free products are routinely tested using the ELISA method to ensure there is less than 20 ppm gluten.” I’d seen “ELISA” referenced before but never looked into it. So i did, and I found this: http://www.ezgluten.com/ – Gluten test strips for the home user. Is this a legitimate way to test food at home?

[IH]: According to ELISA Technologies, Inc., the EZ Gluten Test Kit is “100% accurate at detecting gluten levels as low as 10 ppm in foods tested. In research terms, the test is highly specific and sensitive. It does not cause false positive or false negative readings.”

Okay, so the testing seems legit to me (and my chemist hubs and another chemist I know on celiac.com) IF you do the test properly. At a pricey $15 for each test, only you can determine if you want to know if the “tests as low as 10ppm” is as legit as “under 20ppm” designated already on the package. Seems like a waste of money to me (better spent on GF beer!!)

If you decide to get them, just do not waste your money testing bananas and chicken breasts okay? I promise you, they are GF.

Q: A friend of mine posted your Celiac Disease Symptoms on FB. I never thought I had it because I am not wasting away. I read it because I am a nurse and was just curious. I could not believe that most of my illnesses in the last 19 years were listed there. Going GF had miraculous results for me. Thanks Gluten Dude for posting the symptoms. It really changed my life.

Q: Just wanted to tell you our story. Last year my partner was constantly sick, headaches, achey exhausted, depressed and had a bunch of seemingly unrelated health things going as well as agonising digestive issues on an irregular but increasing basis. I did some research but his symptoms didn’t seem to match anything. Then I stumbled across your infographic. He had one symptom from every (male-relevant) category! Both he and his doctor said “Nah, probably not” but I insisted he be tested and you can guess the result. The difference since cutting gluten out of his diet has been nothing short of amazing. Daily headaches gone. Constant illnesses gone. Hayfever massively improved. Depression and lethargy gone. No agonising gut pain. And if he accidentally gets “glutened” the physical symptoms are all back within 2 hours. Anyway, just wanted to say thanks because it was your infographic that made everything make sense. Many thanks

[GD]: [Smiling ear to ear!]

Dude, your latest article about Hank made me think of jails, prisons, and celiac. Assume a celiac is picked up late one night and taken to the jail. How do they eat? I’m sure the local jail doesn’t make safe GF food. What about prison? Do they get “GF” food prepared in the prison’s kitchen? I think my celiac son had it right when he said “If I get arrested, no matter for what, it’ll be a death sentence.”

[IH]: I am pretty sure people are not served breakfast after spending the night in the tank. And I have actually discussed this with other celiacs and the conclusion I came to was this: getting a safe GF meal is not even in the top 5 worries I would have if find myself in prison.

I mean, have you SEEN any prison movies? Ack! Those big ole scary prisoners, the filthy toilets, the shared showers, the teeny tiny cells, those god- awful uniforms…I mean, seriously, who can pull off orange?

We can never get old, sick or stupid because then we go to nursing homes, hospitals or jail and, yes the institutional food will kill us.

Q: So my 14 y.o. daughter has been complaining of headaches, joint pain, tingling and numbness in her extremities and for the last many years we have been running her to the doctor with complaints of stomach pain and nausea. Recently we took her in with complaints of lower abdominal pain and went through the gamut of tests. Most of these symptoms have been deemed psychological complaints and dismissed. Surprisingly her psychiatrist recommended we try a gluten free diet as his daughter had similar symptoms and this worked well for her. At her follow up visit for the lower abdominal pain the pediatrician decided to run a test for gluten sensitivity. The report from physician came back positive but not positive enough for a diagnosis of Celiac disease. What the heck does that mean??

[GD]: It means your pediatrician is an idiot. First of all, dismissing someone’s physical ailments as psychological is as bad as bad gets. I hear it all the time in the celiac community. If the doctor can’t figure it out, then it must be in our head. Damn lazy ass doctors. Aargh!!

Secondly, there is no viable test for gluten sensitivity so I’m not sure what he/she is talking about. There is a specific blood test for celiac disease, followed up by an endoscopy. That’s it. That’s still the gold standard.

Please find another pediatrician if at all possible. I wish you and your daughter the best of luck and the best of health.

This last one is not a question…just a wonderful email I received. It’s emails like these that keep me going; that remind me that what I’m doing is important; it matters.

THANK YOU.

Thank you for bringing people together who had been through the same things and a place to go when I’m tired and itchy because my family has well-meaningly poisoned me over the weekend.

Thank you for letting me know that someone is standing up for us online when I’ve been shamed by a food-service worker or made to feel small for trying to stand up for myself.

Thank you for giving me something to distract me after gluten-induced days of anxiety or on the long nights that I am sure gluten-ataxia will take over my brain and leave me lost and alone.

Thank you for being the Dude.

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55 thoughts on “It's a Gluten Dude / Irish Heart Mother of All Mailbags”

  1. Hi GD,

    Thanks for responding to my note on the pasta stir sticks! As you say, I don’t expect to be *completely* catered to in such a setting — I mean, I went there with every expectation (fulfilled, BTW) that there’d be no GF foods available — but I never *dreamed* this stick thing would happen; it just really rubbed me the wrong way. It’s like you said in one of your other answers, giving up gluten is the easy part, it’s all the other crap that’s annoying, and this just strikes me as a perfect example.

    You’re right, they had no warning about it; I had it in my hand before I even realised it. Just quickly grabbed it with barely any looking or thought (who expects gluten stir sticks?!) and even accidentally broke it, guess I assumed it was wooden so I prob handled it a little rougher than a piece of pasta ought to be.

    There was an attendant present but I figured it wasn’t her fault so didn’t feel like making a scene, but I couldn’t let it slide completely. After discreetly making my point (educating, as you properly put it) she told me they changed over because pasta composts more easily than wood, and I’d say this decision came from much higher up on the food chain than her. Whether my point ever got any farther than her, I never pursued, but I’ll be watching if I ever go back there, and I’ll be making my views known if I ever see this anywhere else, too.

    1. John, I had to laugh out loud at the pasta thing, even though I’m sure for you it must have been very annoying/frustrating! It just seems like so surreal. The composting explanation makes SOME sense, but given that you can buy actual compostable coffee stirrers, it seems like a weird cost-cutting shortcut.

      To the pansy—everything you listed is sold in a gluten-free version or can be made according to a GF recipe, so it’s not like you’d really be losing your favorite foods (even though, yes, you’d probably pay more for them and notice differences, especially at first, between them and the “real” stuff). It’s definitely “all the other crap” that is the problem. GD, kudos on an instantly quotable line.

    2. I’ve seen that before, its supposed to be cheaper than stir sticks. My advice? Get yourself a nice reusable steel or glass stick, and then tell them you’re being “green”. Maybe you might inspire them to make a change too!

  2. Thank you for covering the Godiva Cheesecake issue!!!! I contacted them myself having read that disclaimer on their site and going into one of their stores to see what they said there. After talking to Cheesecake factory they told me that “they don’t know why godiva would tell celiacs not to eat their products, the final products tests under 20ppm so it’s perfectly safe.” I was appalled. No matter how I tried to explain to the lady that some people will still react at 20ppm she didn’t believe me. The best part was when I asked her to put this information into writing for me, she kept refusing.
    This is what I finally got back from Cheesecake factory. ~~
    We strive to provide accurate information however, our ingredients change from time to time which is why we have not posted this menu to our website or offer it in an electronic format. We prepared this menu for guests with sensitivities to gluten. Our kitchens are not gluten free and cross contact may occur. Some items may contain as much as 20 parts per million of gluten.

    1. I was at the CF recently, and asked for their GF menu. My server said, “I know it says that’s a GF cheesecake, but while it’s flourless, you might want to be careful of the chocolate. I’ve heard from other people it can cause problems.” BRAVO to a server for listening!

      1. Isn’t it sad we have gotten so use to facing people who don’t know or don’t care that when we run into knowledgeable people we get so excited?

    2. First, everyone, please understand there is no such thing as 100% gluten free unless you are picking apples off a tree or tomatoes from your own garden. Even totally dedicated factories and your own gf kitchen will disclose a trace of gluten. It can’t be helped. What we all need to understand is what the 10ppm or the 20ppm designation actually means. Neither can be seen with the naked eye. It is less than a drop in the ocean. It is not even a crumb falling into your plate. It is a trace and 99% of those with gluten sensitivity will NOT react to it. Check the label of every single gf item you buy and bring into your home.If it says processed in a totally dedicated gf factory, look for the 10 ppm or 20ppm designation. That’s as good as it is going to get. Fruits and vegetables are fine,especially fresh, but do not always trust canned. (canned beans sometimes contain gluten). If that label says processed in a facility that also processes wheat- you might not want to buy it especially if you are that 1% who are especially sensitive. Just be realistic about this whole subject; Your own kitchen may offer more chances for cross -contamination than some (not all) restaurants.

    1. In the video, Ms. Peterson says that Dr. Marsh thinks that a positive celiac blood panel is sufficient for a diagnosis, and I agree with that, however, I have to disagree with you that the blood tests in the US “are useless”.(and this is coming from someone who is seronegative).

      My response to the mother was based on the fact that her son is still consuming gluten, so a blood test is less invasive. If he tests positive, then maybe a doctor will opt out of the biopsy and DX him, but it is a rare doctor who does not follow what has become the “gold standard”.
      I think this is a mistake, IMHO because a positive panel is still positive.

      Finding a medical doctor who will say “it’s definitely celiac” based on symptom-resolution and medical history alone is going to be difficult. Some people get lucky enough to find en enlightened doctor.
      Again, this is IMHO based on all the accounts I have read from dozens of celiacs and NCGS people through the years..

      If it is negative, the mom always has the option of trialing a GF diet.

      But I doubt any doctor will go straight to an endo/biopsy. Until the protocol changes, unfortunately, that’s how CD is diagnosed.

    2. Another thought for that child with Graves Disease. If at all humanly possible and it were my child, I would make an appt at one of the Celiac Centers for kids: Boston (Mass General with Dr Fasano, Columbia, NYC, Dr Peter Green, U of Chicago, Dr Guadliano, and the one in California (don’t know the name). The sooner the better. That child’s life is in danger and that family needs help. Now.

  3. Regarding the question about coffee … I have noticed that many of my acid reflux symptoms are similar to the way I feel if I have been glutened. I have cut out all caffeinated drinks and this has helped immensely with my morning cup of tea but haven’t been brave enough to try a decaf coffee yet. I’m not sure if this is the case for the person who asked the question but may be a possibility?

    1. Are you drinking instant coffee or ground? If ground, are you grinding your own? I find I sometimes react to instant and wonder if some brands add a gluten-based starch to keep it from clumping.

      1. The other thoughts that came to mind are – is it flavored coffee? Some flavored coffees do use a barley-based caramel to “flavor” the coffee.

        Also, is it a Keurig brewer? Some contamination is possible from the few brands of flavored coffee and tea drinks that do have gluten in them.

        Is it regular cross contamination? Someone use a glutened flavored coffee in the same maker as the regular coffee?

        if its decaf, is it chemically decaffeinated or naturally decaffeinated (or reduced caffeine)? Some people have reactions similar to a glutening of the chemicals used to decaffeinate the coffee.

        There are SO many questions when it comes to coffee. Not to mention that coffee is used by many people to stir up the kind of digestive side effects that we want to avoid, so many people mix up a gluten reaction and a normal function of coffee.

      2. Oh, Lordy! Where did you ever get this kind of information? No one uses a wheat based anything to prevent clumping in coffee. Coffee does not clump, even when freshly ground.

        As to flavored coffee, this is not as big of a problem as some believe. Barley is rarely used in the US in flavorings as it is expensive. It used to be more widespread when I was younger but that was decades ago. In fact, most added flavorings are safe for us. You always, always have to read the label but in 9 years gluten free, I have yet to find any flavoring in coffee that was barley based in the US. I know that in Europe, some coffee uses a gluten based grain added to it but that is usually the cheap coffee served up on a buffet table to tourists. There are plenty of Starbuck’s and other great coffeehouses there that do not do this.

        People should really base there knowledge on sound medical publications on Celiac Disease and not browse the internet believing everything they read on a blog. There is way too much misinformation out there!

        1. Ooh, I’d be really super careful about trusting anything at Starbucks to be gf (other than a sealed package of coffee beans). My stepson managed Starbucks stores for many years, and there is rampant cross-contamination. I confess that I’ve broken down once or twice and had a black coffee from there, in times of caffeinated desperation. But I really don’t recommend it, especially for those who are extremely sensitive.

          1. I really appreciate your concern but I have been gf for 9 years and am very sensitive to small amounts of gluten….which pretty much happens to everyone when they do the diet correctly. Really……once you clean out your system from all that gluten poison and heal, at least for me, any hit is 2 days of hell. Having said that……I only ever order one of two things at Bucky’s and they would be a soy chai or a soy latte. Nothing else. I have never, ever been glutened at Bucky’s in 9 years gf. They ask you to inform your server of food allergies and they know me there as I frequent their stores at least 2 times per week so feel very comfortable. I am pretty sure that some stores/employees can be sloppy but if you let them know to be careful with your drink, then it’s about as good as it gets when ordering take out coffee/tea.

            I recommend them to sensitive types but honestly? This whole super sensitive stuff is getting old. EVERYONE becomes more sensitive as time goes on, if they do not cheat and are really gluten free. Most Celiac’s notice this, as they heal. If I can order their drinks and never get sick, anyone else can do this. There is no food involved…..just a coffee/tea drink. I am also very dairy lite and that’s why I use soy and still….never gotten sick. There is protocol to follow as a Celiac when ordering anything out but it can be done successfully.

            In Europe, they are way more food allergy/intolerance savvy than Americans are so no need to fear them when traveling!

            1. Glad it’s working for you. Truly wish I could still enjoy them, but my stepson has seen a lot in his 7+ years with various SB locations, so I’m just not going to take a chance. They use the same steaming wand on the flavored lattes (that absolutely do have gluten in them) as they do on a regular milk or soy latte and they do not clean or sterilize them in between drinks. So even if you have a dairy sensitivity, it’s not wise to get lattes from Starbucks.

            2. Your comments are very general and, I think, not exactly representative of the whole picture. If someone as sensitive as I am with both a dairy and gluten problem, can drink a Starbucks drink a couple of times per week and not get sick, then I think it shows you can safely drink at Starbucks, if the staff are aware of your allergy/intolerance. You can watch them make the drinks yourself so why the fear? You are certainly free to avoid whatever you choose to avoid but that does not mean the place is not safe.
              I know many people who drink Starbuck’s drinks and have never had a problem so no need to avoid them. They hire more intelligent people anyway so telling them your needs is no big deal……they get it. Besides, they do not steam the flavoring when making lattes. They steam milk or soy only. The flavorings are added to the cup…..they do not come near the steaming wand. Add to that many of the syrups used for flavoring are gluten free already…..not everything they use but many of the syrups are. I sat and read the ingredients listing myself so to say it is not safe to drink there is incorrect. It’s irresponsible to post on a blog that a good company is not safe when, with a little education, a safe drink can easily be made.

            3. That’s your personal experience, and I’m happy for you. I’m glad that you can still enjoy your favorite beverages. I’ve had a different experience. I am sharing my own experience, as many people here do. Ask Starbucks and they will tell you that they cannot guarantee the safety of any celiac, due to cross-contamination. People can take whatever information is shared here or on any blog or forum and make their own decisions about how best to live their own life and protect their safety. I’m signing off, as this is obviously no longer a productive conversation.

        2. “People should really base there knowledge on sound medical publications on Celiac Disease and not browse the internet believing everything they read on a blog.”

          Ahem… 😉

          1. Well…..except your blog, of course! How silly of me to forget to add that! We have to have the myth busters, after all!

            1. lmao…yes, and myth busting takes up the vast majority of our internet time, doesn’t it? Man, .I am exhausted. lol Thanks for your rational thoughts, Gem.xx

  4. I have the same problem with coffee no matter how it’s made. I don’t think it has to do with celiac. I think some peoples bodies just don’t agree with coffee. I find if I drink it black I don’t have as bad of a reaction, but I still don’t feel great. I had to completely give it up which was almost as bad as giving up gluten. But anything is better than feeling like shit all the time.

  5. I agree with you both …:) .coffee can be abrasive on the gut, for sure. If someone has gastritis, coffee is a big no-no– until it resolves.

    I switched to brewed decaf myself because caffeine revs me up and causes heart palps.

    1. Hi there friend! I mix half and half decaf and regular- that’s how we do it and how I can still get my 2 – 12 oz mug-full every morning without overdoing the caffein bit. Folgers black silk and Dunkin Donuts decaf is my preferred combo. No acid problem whatever. Thanks for the info about Keurig pots- will have to watch that when visiting others. Also the info about flavored coffees produced in the US or Europe– years ago I saw barley on the’ label, guess it is not longer true? I don’t drink them but others do, I want to know for sure. Since going gf 10 years ago I have not had a single occurrence of acid reflux which had plagued me for years. I guess it comes down to “each to their own!”

  6. My daughter was diagnosed in April of last year. Her gastroenterologist gave us a letter for the cafeteria explaining her needs for a gluten free diet. With zero expectations, we took it into the cafeteria during open house. We had a meeting scheduled with the school nutritionist the next day and discussed options. Within a month, the school had researched and prepared a meal plan for our daughter, trained a dedicated cafeteria staffer, and purchased dedicated cutting board and supplies just for her. She has been eating two meals a week (salads with gf muffins or crackers or gf wraps). I hope you can get your school’s nutritionist involved, maybe the letter from the doctor will help.

    1. Jessi, sounds like you have a team dedicated to doing what your child needs. That’s awesome!
      A child diagnosed with celiac disease is covered by the American Disabilities Act which requires accommodations be made to provide suitable (in this case, gluten free) meal options. Whether you choose to trust the cafeteria to provide such would depend on how knowledgeable the staff appears to be about what constitutes gluten free.
      We had to provide a doctor’s letter every year but our staff tried to provide for our daughter from the time she entered public school in 9th grade (home schooled prior). They made acceptable changes to the menu most of the time, but often couldn’t figure out what to do to meet her gf needs and the federal lunch guidelines at the same time. I took Tinkyada pasta portioned into serving sizes with cooking instructions to the cafeteria so they were able to make spaghetti and other pasta dishes without flour ingredients. Quite often they gave her extra fries or tortilla chips to make up for the bread they were serving the other kids. I feel like they did the best they could since they are not given training for this area. (Unfortunate, but not surprising considering the pay level for most of the cafeteria workers.)

    2. I asked at one school and they have me a district nutritionist who prepared the menu and sent it to me in advance for my approval. We moved and the new school said, oh we don’t do that. I acted surprised and said, I was told it was a federal law and a public school has to provide a meal to those with dietary restrictions from a doctor…but that I hadn’t had time to research it, yet the last school did and that’s who told me. I was super nice and polite. They researched it and said, yes, it’s the law, please bring in something from the doctor. I had to sit with the district as they had never done it before. They have a list of approves vendors and for every allergy. We say and made a menu that matched the schools menu to the bestir our ability. Amy’s pizza for pizza day and Udi’s gf buns for hamburger day..dedicated area and plates. Then when we moved schools, did it all over again and even trained the district manager…it’s about educating. My kids love having hot lunches and really I love to have a break. Plus all the kids are jealous of their meals…a change for once 🙂

  7. For the Mom with the child who can’t eat at school, that is illegal. The school district can’t do that. She needs to have a 504 plan and they have to provide her with food she can eat.

      1. I am a school counselor, what they are doing to your child is illegal. A 504 plan would take care of this. It is not just “for disabilities like dyslexia”. That is what an IEP is for. A 504 covers things such as eating restrictions, diabetes and many other things. Just as a child with a nut allergy must be provided with safe food, so must your child. I actually sat in on one of these meetings today. Good luck!

  8. In regard to the coffee, I have problems with certain brands. I can’t drink Folgers no matter what. I get a gluten reaction to the regular, decaf, K-cup, and instant versions of Folgers. Green Mountain and Peet’s coffees I’ve found to be safest, and I have had even less issues since I started buying whole beans and started grinding them myself. I figured it was probably because most places share the coffee production lines with the flavored coffees that sometimes do contain gluten. So, I am just very careful about the form the coffee comes in and the brand I buy. When I am diligent I have no reaction.

  9. Hello! I’d offer one caveat regarding the coffee question. If a manufacturer also produces flavored coffees, they almost always process them on the same equipment, and there can be contamination in the plant. So just be sure you do your research regarding your manufacturers/roasters. I happen to know that even though Green Mountain Coffee (the brand most readily available in my area of the country) has dozens of flavored coffees, they use gluten in none of them. Or you can just stick with a roaster that doesn’t do flavored coffees at all. I’ve found it pretty easy to stay safe & enjoy my caffeine consumption with just a little bit of homework! 🙂

  10. The question about coffee got me thinking. While coffee may be gluten free, if it bothers a person when they ingest it, then stop drinking it! Not eating gluten may save you from being glutenized, but we all might have other “allergies” or “sensitivities” or “intolerances.” Besides gluten, I know I can not eat dairy (well, duh, that is the same for many of us), some brands of chocolate do me in, corn is an irritant, and on and on. If something seems to bother you, STOP EATING IT, and see how you feel without it. Then do a trial. A doctor is suggesting I do a full on elimination diet and I don’t know if I can bring myself to do it. But I might. Right now I am at the “see what happens” stage. I was shocked to find out that regular allergy testing (under the skin sort of thing) doesn’t tell you whether you are sensitive or intolerant. So. Not. Fair.

    1. This is exactly what I was going to say. As Celiacs (or just gluten intolerant) we tend to have more sensitive guts than other people and cross-reactivity is a real issue. I have no idea if coffee actually “acts like gluten”, but I do know people who are intolerant to gluten and also can barely handle coffee. Basically, if it makes you feel “off”, then stop using it. Who cares why it doesn’t feel right. Your body can tell you many things if you pay attention to it.

      1. Yes, as Celiac’s we do indeed have more sensitive guts but it has nothing to do with the made up non-science of cross-reactivity. It has more to do with the fact that coffee is an irritant for many, due both to the caffeine content and the acidity of some coffee. There are many non-Celiac’s who cannot tolerate coffee.This is nothing new. The only thing different is that there are too many pseudo scientists trying to re-write nutrition/medicine to make money off of people who are sick and trying to get well. They are taking advantage of people to make money and that never sits well with me.

        1. “There are too many pseudo scientists trying to re-write nutrition/medicine to make money off of people who are sick and trying to get well.”

          Oh…can I get an AMEN to that!!

  11. The American’s with Disabilities Act requires that the school provide food for the child. If it will be safe is difficult to judge. The more parents asking for it, the more schools will get better at it. Unfortunately most school districts do not have a nutritionist as stated in some of the responses. I am the only dietitian at the only hospital in my large county. I sometimes get requests from school districts for various needs but cannot go out and help them, I just try to send them some information.
    P.S. Irish Heart. My little 30 bed hospital has a gluten free menu similar to the regular even though we only get a celiac every few months. They can order made-to- order omelets, French Toast, pizza, spaghetti, cookies, muffins etc. We mange to provide decent but not elaborate meals and keep the patient’s safe and they seem to love it. Yes, the dietitian is celiac, but any hospital could do this. Hospitals are getting better at it.

    1. Part of my response was tongue-in-cheek, as I am sure you could tell, Gloria. :)…. and I do hope there is more done to ensure completely safe and free-from-CC meals for celiacs in the future.

      I am glad your hospital gets it, but I can tell you that not one celiac I know who has had to go in for surgery has had a knowledgeable celiac on staff that could help them out. I hear more horror stories than success stories
      and a large hospital cafeteria does not have time to accommodate some folks. My friend’s shrink-wrapped GF meal contained a banana, a yogurt and a corn muffin in it. This came after she was asked, “but, can you eat corn?” she said yes…. (but it was made with wheat flour in the mix).UGH

      On a brighter note, there are some assisted living places who are catering to the needs of GeeFreers, so….when the time comes and I need a place like that, maybe it will just be the “norm”. There’s always progress being made. Cheers!

      1. 2 knee surgeries a year apart, 2 – 3 day hospital stays, 2 – 1 week
        rehab stays. Two terrible experiences. This was 3 years ago.. The hospital experience was the worst- they were limited by what they could order from the supplier which wasn’t much. The rehab place
        really tried but after 3 days of scrambled eggs, cottage cheese, and hamburgers without rolls, I gave up and allowed friends to bring in’
        meals from a local place that had gf food to go. They have since told me there have been many more gf patients and they are doing much better as a result of my educating them! Hello???

  12. To the person that has the office buying snacks for everyone, if the company is purchasing them with the expectation that the workers eat them, you can file an ADA claim to get them to provide gluten free alternatives. If its just people bringing them for everyone to share, than the best bet is lock them in your desk. I have a dedicated supply of GoPicnic, snacks, and bars in my desks for the times when I need something, and I willingly share when other celiacs and GI folks come to visit.

    Either way, I would start making the argument for “healthy” and “environmentally friendly” snacks. Things like Rice Chex cups, trail mix, nuts, dried fruit, hard boiled eggs, and yogurt cups can be procured in bulk for decent prices from almost all major catering companies. If they’re not married to one company, GoPicnic regularly runs meal specials that get down to less than $2 apiece in bulk purchases.

    Especially this time of year, you can usually make wonderful inroads with folks because eating things like nuts, fruit, eggs, and yogurt instead of Twizzlers, chips, and Lucky Charms can help them in their efforts to keep their NY resolutions and lose weight.

  13. To the person who wrote in about how far should they go to get a diagnosis and that their biopsy was negative: since celiac disease is linked to heredity, I would also suggest getting the gene test if they can afford it. (some insurance co. won’t pay for it). The HLA DQ2 and HLA DQ8 genes are markers for celiac disease. The HLA DQ2 is the most common gene associated with celiac disease. Dr. Sheila Crowe, a professor in the division of gastroenterology and hepatology in the department of medicine at the University of Virginia, reported in an article for the New York Times in January 2010 that “These genes are in the family of genes for proteins referred to as human leukocyte antigens, or H.L.A. A subset of these genes are involved in autoimmune diseases, and the genes that predispose to celiac disease are in that group.”

    “Some of these H.L.A. genes can be tested using a sample of blood or cells taken from your mouth by swabbing the inside of your cheek. They are known as H.L.A. DQ2 and H.L.A. DQ8; 95 percent of people with celiac disease have genes that include H.L.A. DQ2, and 5 percent have genes with H.L.A. DQ8.”

    “Tests that detect H.L.A. DQ2 and DQ8 genes can suggest a diagnosis of celiac disease, but they cannot confirm a diagnosis, since 35 percent to 40 percent of the overall American population carries these genes. Only a small subset – 2 percent to 3 percent — of all people with these genes will ever get celiac disease.”

    “What this test can tell you is whether you are at risk of having celiac disease, since without these genes it is virtually impossible to get celiac disease. This is one celiac disease test that only needs to be checked once in a lifetime, since our genetic makeup does not change.”

    What I find most interesting is that she states “if you do not have these genes it is virtually impossible to get celiac disease.”

    My blood test and biopsy was negative too. But I had been off gluten for 3 months and did not know I needed to be ingesting it for these tests. I went ahead and had the gene test done and a biopsy of a skin rash on my left leg and arms. The skin biopsy came back as positive for dermatitis herpetiformis. The gene test showed that I have HLA DQ2 and HLA DQ8. I was diagnosed with hypothyroidism in 2007. Also, associated with celiac disease.

    For me personally It was plain and simple, I wanted to know if I had an auto-immune disorder or not.

    Thanks GD for all you do and reminding me that I am not alone.

    Aloha!

      1. hahahaha I can take that comment 2 ways; one, my wealth of information really needs a good shoveling and I have too much time on my hands or you are referring to all the snow you’ve been getting as I sit on my lanai watching sunset every night with cocktail in hand. I’ll assume the latter and the answer is NO! This is why I live Hawaii and I have more time on my hands, no snow here! Well there is snow on occasion on Mauna Kea but that is totally cool.

        🙂

        Stay warm GD!

  14. Hey dude–a few of your recent posts were about testing, specifically having to restart a gluten diet to get accurate results. I follow the University of Chicago’s celiac center’s website, and just today they posted an article about a new that yields an accurate diagnosis in 24 hours. Thought this was worth sharing.

    1. Brett, jacquie
      I saw that article, too but please notice it says they “MAY have found a way to diagnose it after a 3 day gluten challenge
      and then, the results are available after 24 hours.

      They conducted a study with a mere ” 27 subjects with CD and 17 without.” and they underwent three days of a gluten-rich diet, and then took a whole blood test.

      “….may have found an alternative, and one that could not only diagnose CD, but catch it before the damage has been done. And the entire process takes four days or less, with test results in about 24 hours.

      The researchers say the test can determine CD with 85 to 94 percent specificity and exclude those who don’t have it with 100 percent specificity. Tye-Din and his team published their study results in Clinical & Experimental Immunology.”

      I can see it now: the people who criticize the current testing (with a 98% accuracy) will view this skepticism. Until that research is peer-reviewed out the ying-yang, that test is not going to be available for a while.

      …but if it survives rigorous testing and it works, HALLELUJIAH!!! 🙂

      Here is the article, (but what is maddening is the use of the term “gluten allergy” when referring to celiac. argh.)

      http://www.healthline.com/health-news/food-new-blood-test-for-celiac-disease-011714

  15. Thanks for putting up my Godiva Chocolate issue. I did contact Cheesecake Factory who insisted they test their cake. Cake may be flourless, but that chunk of chocolate is not gluten free. The whole concept just makes me angry, I do not ask that you cater to my needs, but do not falsely advertise something as being safe.

  16. RE: the study done on a 4 day gluten challenge/24 hour DX?

    Here is what U of Chicago Celiac Center Founder and Medical Director Dr. Guandalini says about it: “The study is very interesting and promising, especially as a quick diagnostic tool when positive. But when negative, it cannot exclude celiac disease, as it is not sufficiently sensitive. The study included only a small sample, so as the authors caution, its results are not ready to be utilized in clinical practice. It is also likely that it will apply only to those patients with the specific genetic profile of HLA-DQ2·5+. Those with the HLA-DQ8 gene do not seem to respond with an immune response to gluten peptides after an oral gluten challenge. More studies need to be done in other centers (to document reproducibility) and on a larger population.”

  17. Hi all,

    I was the one who mailed GD about getting stuck with the pasta stir sticks and I just wanted to pass along this update.

    Last week I returned to the “scene of the crime” for another event, about a year after that incident. I made a point of checking out the complimentary refreshments and I’m very happy to report that while they still had pasta stir sticks, there were wooden stir sticks made available. Huzzah!

    Since I admonished them last year (and to discourage any backsliding), I felt I had to be fair and pass along some kudos this time. I had a great chat with the attendant. She said they’d gotten a lot of feedback from concerned folks like me and she seemed very aware that gluten is a total no-no for some people. She even added that she now goes out of her way to make sure there are GF stir sticks available at every event she manages.

    Progress. Isn’t it great?

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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