It's Mailbag Time!

gluten questions

I’ve got a laundry list of items I want to blog about.

I haven’t touched upon the FDA ruling yet. There’s the new gluten-free dating site. A new “Gluten Free Vodka” is being marketed…even though all vodka is gluten free. The Today Show AGAIN showed they have their heads up their behinds.

But then I looked at my inbox, saw the plethora of emails I have not responded to (that’s right…I said plethora) and said “Dang it Dude…you are way behind. It’s time for a Gluten Dude Mailbag.”

And so it is.

Q: From one dude to another, what do you order when at the bar. I see you’re a family man so I imagine you’re probably not boozing it up all the time but, when you do go out, seriously, what do you get? I know I’ll never be “normal” again, but it’s nice to pretend sometimes.

Being a family man means I actually drink more…but I suppose that’s besides the point. The options at a bar are limitless. Vodka, rum, gin, tequila, scotch, wine….the list goes on. Most distilled spirits are gluten-free (thank you God). Stay away from anything flavored just to play it safe.

Q: I am spending my birthday next week in St. Louis and really want to eat sushi while I am there since I went from eating it every week to never when I moved to Southern Illinois. Anyway, I was wondering what questions/precautions I should ask/take?

This email was sent to me in June. I think I just missed the deadline. Sorry about that. Anyway…yes, some sushi places add soy sauce or vinegar to their sushi rice but I have only come across that twice. Stay away from anything with imitation crab meat. No tempura anything. Your safest bet is sashimi. I personally go with sushi and avocado rolls with wasabi. Now I’m hungry.

Q: Your blog has been SO INCREDIBLY helpful as I worked to get my house gf for my 4 year old daughter who was diagnosed with Celiac. My problem is that I was also diagnosed with Celiac. I seem to be split…with my daughter, I am incredibly thoughtful, aware, concerned about her short term and long term health. With me, I am in total denial and a complete mess. So far (it has been about a week), I have mostly hidden my diagnosis. While I have had health issues off and on throughout my life, they are no where near the severity of my daughter. I just can’t truly believe I have Celiac. (Yes, the blood tests were positive and I was confirmed with an endoscopy.) I guess I am scared that I won’t be a good role model for someone with Celiac. Do I really need to be gluten free if I don’t have the symptoms? I know what you will say. You’ve said it before. It is just so hard to believe that I need to make this life change when I don’t have the symptoms kicking me in the butt. If I am worried I can’t hack it, should I just hide it from my daughter?

It’s only been a week. Do not beat yourself up. Moving forward…yes you MUST be gluten-free, regardless of your symptoms. It was just announced this week that celiacs who continue to eat gluten have a much higher risk of lymphoma. If that won’t scare you straight, nothing will. You wanna be there for your daughter? You gotta take care of yourself. And you’ve got an awesome community here to lean on.

Q: Why does Schar multi-grain fall apart right after opening the package. This happens all the time, I can’t even eat a sandwich with dignity. Is the bread old? I have no clue as to why this is happening. Any suggestions where I can buy gluten free bread where my sandwich does not come apart. This is expensive enough and have to throw this out because I can’t eat crumbs for a sandwich. If I wanted crumbs I would have bought crumbs. A response would be appreciated.

Well…I think the good folks at Schar will be able to answer your question better than I can…and I will pass it on to them. But in short, gluten is the glue in bread. Without it…well you see what happens. That being said, I find it pretty inexcusable that you are paying a premium price for a product that falls well short of expectations. While the big companies continue to try to perfect their breads, there are many smaller companies doing a great job at it. I just had some Three Bakers bread and it was pretty darn amazing. You can buy it online from them or find a store near you on their website. May the bread be with you.

Q: I’ve just had blood tests come back positive for coeliac disease and I’m having my endoscopy tomorrow afternoon. I have mild symptoms. I’ve been doing some reading about the disease and I’m getting a bit overwhelmed! I’m fine with eating gluten free food. But my questions are about cross contamination: do I need to worry about it a lot if I have only mild symptoms? If I only have mild symptoms, am I still doing damage to my insides?

See the question above. Symptoms don’t matter. All celiacs have different symptoms and various degrees of symptoms. So yes…you need to be concerned about cross-contamination. I know…it sux.

Q: I’m not sure exactly what to say in restaurants when asking for gluten free meals or at other people’s houses to educate them without sounding bossy and snooty.

I’ve been a celiac for almost six years now and I STILL hate giving the speech. Read this post about ordering gluten-free in a restaurant. There’s a method to our madness. As for other people’s houses, unless you are very good friends, I suggest you bring your own food. The person can have the best intentions but unless they are well-schooled in celiac, it’s just too risky.

I am on 100% Gluten Free diet since April (but who is counting) and I feel so much better. Now the problem is that emotionally I am having a hard time accepting the fact that I have to live gluten-free for the rest of my life. I am so sad and angry ALL THE DAMN TIME. How can I suck it up and stop mourning my previous gluten-filled life? Well just wanted to vent and tell you that you are my hero; I admire you and your blog and the force behind you or in you.

Since you feel so much better, I suppose the obvious question is “what’s there to mourn?” But I totally understand where you are coming from. It’s a process. You just haven’t completed it yet. Since my kids are now teenagers, I’m not sure I fit the “hero” bill anymore 🙂 so thanks for your kind words. They mean the world to me.

How do you manage chocolate cravings?

By not having them. But if you do, Hershey’s Bars are gluten-free. So are M&M’s.

Half question half rant here… I was wondering what you thought of the Paleo people (or really any non-necessity gf dieter) comparing themselves to those with medically based reasons to be on a gf diet. They want to eat that way, great, but don’t try to compare grocery war stories because at the end of the day they have the luxury of not getting sick from food.

Anybody that eats a certain way to be healthier I am 100% behind. Now if that person complains about their diet and how hard it is, I don’t want to hear it. Walk in our shoes for a week.

I loved your Celiac disease symptom chart, it was so much help! But i needed to ask you a a few things since lately i have started feeling i might have celiac. I have almost all symptoms that you’ve listed on your chart. Frequent Migraines, low calcium, low b12 (my left leg gave away last month because of this deficiency), low iron, low vit d since ever, migraines, fainting spells (that doctors say are normal), puffy face and very puffy eyes some mornings,and terrible debilitating pain in my knees after just one glass of beer, sometimes even a sip makes me realize that i should stop drinking! i have seasonal allergies as well and most other symptoms that you mentioned. But sometimes i think i am only imagining all these things, and there is actually nothing wrong with me. But do you think i should go ahead and get checked for Celiac?

YES!!

I was just diagnosed with celiac disease a month ago, (blood test and biopsy), and I’ve been following a gluten free diet. Like you, I started by clearing the grocery shelves of every gluten free comfort food I could find. But it worried me that I was still eating processed foods. I notice that I’m eating way more rice and rice flour than ever before. With reports of unhealthy levels of arsenic in rice, coupled with my increased intake, I’m worried about my health. I feel like there’s nothing I can safely eat anymore. I even just read an article about arsenic in chicken! I’ve been trying to buy all of my meat and vegetables from local farm markets: organic eggs and vegetables, grass-fed beef, and local free range poultry. A huge change from the McD’s diet I followed for almost a decade prior to my diagnosis. I’m making great progress, but I’m still really unsure of how to approach my new health-conscious dieting. I read your blog on why it’s bad to eat “gluten-free”, and that a 30-day whole foods diet can do wonders. Please Gluten Dude, tell me what to eat!

Stop living in fear. That’s my first bit of advice. Just be sensible. Eat meat, fish, fruit, veggies, eggs. There are tons and tons of things celiacs can eat without being afraid. We are actually blessed in a way. We get to treat our disease the natural way.

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20 thoughts on “It's Mailbag Time!”

  1. Hey Gluten Dude!
    Since being diagnosed and going Gluten Free over a year ago I’ve developed other food alleriges. I been using a lot of things with Flaxseed in it as most Gluten Free Breads and a lot of products have Flaxseed. I also thought Flaxseed would be a good source of Omega 3 to heal and seal my Leaky Gut. Well, guess what? Had the mother of all allergic reactions to it 10 days ago. Apparently, I having low level reactions to it for some time but never made the connection until because the reactions were delayed. 10 days ago it happened immediately after drinking a half teaspoon of Flaxseed Oil. After an ER visit and steriods my body is finally starting to calm down. I just started a Rotation Diet to help my body calm down and stop being so reactive.

    My question is have you noticed the more you rely on other foods in the absence of Gluten that you’ve developed other sensitivities. If not, you may want to consider rotating foods so you don’t.

    🙂

    Linda

  2. Awesome post.

    Also, thank you again for the previous post about lymphoma risk if you cheat on the gluten-free diet. It’s good to be reminded not to be careless. (I narrowly avoided a soy latte with barley in it, that day.)

    As far as the alcohol goes? Having celiac is always a learning experience: I never thought I’d be a vodka conoisseur, but, that’s been one effect of having celiac; it is gluten-free. Monopolawa is my favorite potato vodka.

    I’m thinking about having a Cape Cod with it later today, in fact.

  3. If anyone feels like reading it, I have written an entire thread about negotiating your new life as a celiac.. I link to articles about cross-contamination, suggest menus ideas and what you need to do after Dx (and thanks once again GD for allowing me to mention it, so I do not have to type that novella all over again!) 🙂

    Go to Celiac.com forum
    click on COPING section
    click on the pinned NEWBIE 101 thread

    and if I can help further in any way, let me know!

    Also, please get this wonderful book and read it!

    Real Life with Celiac Disease
    by Melinda Dennis and Daniel Leffler
    It has articles by over 50 celiac specialists and covers EVERYTHING–CC issues, nutritional guides, using probiotics and supplements, how to deal with it all emotionally, what the testing means and
    what the disease really means for us, etc. etc.
    Just an amazing resource!!!.

    And just a personal message to the first writer—who asked about what to order at a bar. You say you just want to “feel normal” or at least pretend to be normal.

    Kiddo, you ARE NORMAL!! Hon, please -stop thinking of yourself as “abnormal” because it hinders your ability to enjoy life. (besides, the only thing that separates us from everyone else is one little food protein. ) Booze and wine is gluten free and there are many GF beers and ciders available, so…. Cheers!
    🙂

    1. er, that should say “booze and wine ARE GF”

      …sorry, have an obnoxious head cold and apparently, it affects my grammatical skills. 🙂

  4. “We get to treat our disease the natural way.” Amen, Gluten Dude. A disease that keeps us honest.

    I am thankful every day that, of all the diseases in the world, mine is one that is fully under my control. With proper diet and careful attention to what my body is saying, I can be everything I want to be. Sure, I can’t eat out all the time or do all these “normal” things other people are doing, but when I really look, I see most of those normal things aren’t all that healthy anyway. Missing McDonald’s? Puh-lease.

    Keep it up, and keep us optimistic, Dude. We may not see it all the time, but in the grand scheme of things we got lucky, and it doesn’t hurt to keep reminding ourselves of that.

    1. Amen to all that, Donna!!.

      Most celiacs have better eating habits than the rest of the population.
      Following a clean diet can afford us better lives— in the long run.
      If anything, we should view the rest of the world as in need of help with their awful fat-laden, white flour, overly-processed, pre-packaged diet that promotes inflammation which, in turn, provokes
      diabetes, obesity, arthritis, high cholesterol, hypertension, cancer
      and other assorted AI diseases. This is partly why we are a nation of
      over-weight, prescription-medication reliant people.

      I do not think of myself as “not normal”. And I feel bad whenever I see celiacs use the phrase “I want to feel normal”.:(
      They are not normal activities we are having to alter–they are just habitual. They are what we grew up doing. That does not necessarily mean it’s the best or the only way of doing things.

      We have a “new normal” as celiacs. That’s all. 🙂

      Maybe we need a “celiac pride” parade or something. lol

        1. (chuckling) Sue, I was thinking…..if we had a tee shirt with all the good quotes we have come up with on here, we’d have a full wardrobe! 🙂

  5. Regarding the chocolate question, Junior Mints are gluten free (as well as being peanut and tree nut free!) too.

  6. Okay, there is chocolate… and then there is chocolate. Sure, you can go buy a Hershey bar or some other mundane waxy crap for $1 or less. Or, you can use celiac to justify something a little more exciting, which is what I do. One of the local grocery stores has a section of gourmet chocolates. Bars range in price from about $3 to something like $12 a bar. I am a huge dark chocolate fan and have always found this is far better for a chocolate craving anyway, so I tend toward the bars that are 70% or darker and with something like 2 or 3 ingredients. Yes, these usually cost about $8 or $9 and getting my husband out of the store without him having an apoplectic fit is a chore, but he manages. And it isn’t even possible to eat an entire bar, just a small square is more than enough to satisfy the most intense chocolate craving so a chocolate bar will keep me fixed up for a couple of months.

    Also, for quick fixes you can find at most health food stores and I’m finding more and more commonly all over the place at regular stores, Justin’s peanut butter cups. To. Die. For. Oh God… I need to get dressed and go buy some now.

    My opinion on chocolate summed up is pretty much why settle for average when we have the perfect excuse to demand the best?

    1. Chocolate *begins* at 70%. Anything under 70% is candy. And as a general rule, the darker the chocolate is, the more likely it is to be safe – and vegan, for people who care about that.

      There are three things in life I’m a snob about: coffee, chocolate, and British 80’s music. The great trifecta in my life is a good 70% chocolate bar chased with a medium-roasted fair-trade Sumatra coffee while listening to Cocteau Twins. (Or you can swap out the chocolate and coffee for dipped strawberries and a nice Chardonnay…)

  7. To the Mom with the 4 year old daughter…..You are exactly where I was two years ago after my two daughters and I were diagnosed. I was shocked….totally blown away. I threw myself into researching and reading for my girls. They were my motivation. I was so desperate to make our kitchen safe for them and to educate them and make sure not a crumb was being ingested. One day it hit me…..my girls were handling their diagnosis like champions and I decided to just follow their lead. They watch everything we do and say, so let your little girl be your inspiration. It’s not easy and despite the fact that we are two years into our journey, I still want to pitch a fit from time to time. You are so lucky to have a diagnosis so early for your daughter and in a way, her diagnosis is saving you as well. Fight the good fight, but remember that it’s okay to be frustrated and generally pissed off. On the days when I’m grieving my Mom’s pumpkin bread, I look at my girls and they serve as the kick in the pants I need to try that recipe again or move on. Best of luck to you and your daughter!!!

      1. Thanks so much! I love this website. I was the one who wrote in. It is hard. I keep forgetting that I need to be as diligent with myself as I am with her. (Today, I got glutened from a fruit salad that I assumed was fine. It was fruit, right? Wrong.) She is handling it with such grace and you are absolutely right. I should look to her. Thanks a zillion!

  8. Hey! Always uplifting to read your blog…no kidding!!

    Just a note on Hersheys. I was so disappointed after camping in the Berkshires, about to take on my daughter’s college to make sure she had GF and safe food to eat, and I found out that the S’mores we had around the GF grill…you know… with the GF “graham” crackers…had gluten in the “break apart” Hershey bars. Wow!! Another discovery as we peel that “onion” to gain more knowledge about GF foods. Only the 1.55 and 1.45 oz bars (with and without almonds) are GF. The other Hershey bars (you know…the ones with the bite-sized bits so easy to use on S’mores), on the Hershey website, are not posted as GF!! Guess we’ll have to find another way to feed our Candida when we want those GF simple carbs.

    Talk about “Mom guilt.” Live and learn and then do it better with more knowledge. Thank you for the great posts. I couldn’t agree more about your website…it always puts a smile on my face and a feeling that we aren’t out here alone. And…by the way…I can always blame my mom…bless her, she didn’t know. Never diagnosed, but full of autoimmune diseases in later life, my 1914 girl could have been a poster child for Celiac!! She was so blessed…she married the Nutrilite man in the 1930’s and had the blessings of a natural nutritional supplement back in the “old days.”

  9. Sushi girl here! Never made it to St. Louis after getting sick from something I ate… then we moved and now the semester is about to begin so maybe sushi as post finals celebration?? Anyway, thank you for your response! I prefer sashimi so that works out well. You are the best, Dude!

  10. A response on the whole bread issue. I’m blessed here (Ann Arbor, MI) to have some local gluten free bakers who make amazing buns (both hot dog and hamburger) that hold up BEAUTIFULLY. I’ve also had locally-sourced bread in Portland, OR that is also amazing. But in general, with the exception of Three Bakers and Against the Grain (which you can’t eat if you have a cheese problem because it’s a Chebe-like dough), the mass-produced GF breads crumble. The fresher it is, the better it holds. I tend to make my own – I have whoopie-pie pans that I use for hamburger buns and “boat pans” (think: Twinkie-shaped but *don’t* think “Twinkie” ) that I use for hot dog buns. Fortunately, because GF breads don’t have to develop the gluten, homemade GF bread only has to rise once instead of twice – saving time.

    Just as a side note… I’ve found a few secrets to good homemade GF bread.

    1) Many GF breads call for eggs. Swap out at least half of the eggs for flaxseed (if you’re not allergic)

    2) Millet and sorghum flours make the best breads without the grassy-metallic tastes you get from gar-fava or other bean flours. And millet is high in protein.

    3) If you’re not a vegetarian, GF unflavored gelatin helps with both expansion and moisture. Follow the directions for one packet and throw it into the mix. This works for 1-2 loaves at a time.

    1. For those who don’t know: the flaxseed substitute is 1 Tbsp ground flaxseed to 3Tbsp water – stir and let sit for 15 minutes. This is the equivalent of 1 large egg.

  11. Heyyy there g.f. dude,
    You are just the bomb ya know it? Seriously, you have a great way of putting it out there that’s both non scary, and incredibly informative as well. I’m learrrrning. Twenty four yrs ago, I was dx’ed w/MS. Long story -short, I learned directly from the man himself,the ULTIMATE way to control it’s progress, w/ NO DRUGS. Following the work of the brill ph.d neuro, Dr. Roy Swank. Ok…then an “oxalate metabolic” disorder came on that damn near wiped me OUT. Seven grueling years later…I got the way through dietary correction, to abate THAT and IT’s in check. Now…~this?? My gene pool’s seriously miserable.I’m glad I never reproduced! I really never do, and just hate hate hate to whine, buut It’s suuuch OVERLOAD at times ya know? I know you know 🙂
    I’m less than a year into this and still still still seeing where I’ve got to change course. dark chocolate hershey kisses? no good? Simply orange juices…no good? What can I MIX with my vodka? damn…give up coffee?? I simply don’t have the bucks to buy everything I would like to,~ g.f. Who does?? Since oats are questionable, I’ve been having them every day, anyway. Must I really spend ten bucks a box for OATMEAL?? WOW…sooo many questions still, but I’m so so so grateful, for YOU. Apologize for the rant dude…but thanks, for being there!! Hugs to you~ burghgrl

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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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