It’s Monday Mailbag!

celiac mailbag

Been a long time since I rock and rolled. No…that’s not it. That’s Led Zeppelin.

Been a long time coming. No…that’s not it. That’s Sam Cooke.

Been a long time without you, my friend. No…that’s not it. That’s Wiz Khalifa.

Been a long time since I did my last mailbag. That’s it!! Over a year and a half as a matter of fact. Man…I’m lame. Alright then, let’s jump right into it. Lots of questions so I’ll try to keep my answers brief and somewhat accurate.

Q: Just found your blog. It has been lovely to read after 2 months of trying to figure out gluten free living on my own after my celiac disease diagnosis. I had an appointment with a nutritionist last week who recommended taking a gluten free “vitamin with minerals in it.” She didn’t have any recommendations of brands that might work. So far I’ve found nothing that fits these qualifications. I was wondering if you or your readers might have a suggestion?

Not THAT Flounder.
Not THAT Flounder.
I wish I did. The more reading I do, the more I’m starting to think that most over the counter vitamins are crap. Head to your local health food store or jump on Amazon and see what others recommend.

See that…one answer and I’m already floundering.

Q: So, I’m not sure if you can do anything about this or post something but I heard a super rude Geico commercial about gluten free stuff & I have celiac and I found it to be very insulting; it’s unnecessary.

Oh come on. Making fun of gluten-free is genius marketing. Those ad execs are just brilliant. (I wish there was a sarcasm font I could use.) Yeah, I’ve heard the ads. I know one company pulled their gluten-free mocking version. I forget which one though. Look…they’re idiotic, insulting and totally lame. Maybe one day they’ll stop. Hey…a Dude can dream, can’t he?

Q: I’m a newly diagnosed celiac, so I’m just working through the minefield of hidden gluten. Where can I get gluten free nuts?

From a gluten-free squirrel? In a pair of gluten-free pants? At the gluten-free hardware store? In a gluten-free freak show? Ok…I’m done. Many nuts are gluten-free. Just check the packaging to make sure they’re not made in a shared facility.

Q: I was hoping you could help me figure this one out. I have seen this one other time. Where a product says that it is certified gluten free but under the ingredients it says may contain wheat. My dad bought a bag of these fruit and nut snacks from costco that had both of those labels. I’ve already had a few before I saw that may contain wheat so i hope i don’t get sick.

Ah…the good old certified gluten-free labeling confusion. It’s not supposed to say gluten-free if the product is made with any gluten-containing ingredients. As far as the certification, I’ve heard whispers the whole certification thing is questionable. That’s a topic for another day.

Q: Christian? Single? Your Soul Mate Awaits. Free Trial! Join right now!

God…I hate spam.

Q: Hi…my 15 year son was recently diagnosed with celiac disease after been hospitalized with severe abdominal pain high fevers and elevated liver enzymes and bilirubin levels. My son has not accepted this dx well and I have tried everything to help him I am a registered nurse and have been researching his disease with a passion. He had become angry, combative and hates me. I know that this is all part of the denial/ grieving process but I am really concerned and worried!! I feel lost!!!

Mrs. Dude went through the same thing with me when I was diagnosed. Just kidding…sort of. Give him time. As an adult, celiac is a HUGE adjustment. As a kid, when life is all about spontaneity, I imagine it may be even worse.

My parents used to leave sex-ed books on the book shelves of our family room when I was a kid. I would sneak a quick read when nobody was looking, thinking I was doing something wrong and I’d get in trouble. I found out years later that was their way of teaching me the birds and the bees. I was SUPPOSED to be reading them. Why didn’t they just tell me the books were for me? Good question.

My point is don’t push it on him. He’s got to come to acceptance on his own. But feel free to leave articles around. Send him links to good celiac websites, with a quick “I love you” note. Tell him about my forum, where he can find other kids his age with celiac. He’ll get there.

Q: As a dietitian, and someone who has recently pulled problematic gluten and wheat from my diet (my husband, too), I want to thank you for this wonderful forum. You offer a very nice mix of fun, inspiration, and resources. Job well done!

shucks

Q: First let me say I have not been officially diagnosed as a celiac yet. I, as many others on your site have suffered different symptoms throughout my life but here in the last year or two things have gotten way worse!! I had no idea how much gluten could affect your mind. I am a type A personality but anymore I can barely think let alone be a go-getter and get much done other than what HAS to be done. I have been completely gluten free since Tuesday and it’s Friday and I am feeling human again. My head has stopped hurting my insane rage is better and my gut isn’t killing me. So I will be seeing a new doctor Thursday and I want a celiac panel to be done; however at the moment I have been gf for 4 days and the thought of consuming gluten again just kills me. Do you think I will still test positive for it or do I have to start eating the poison again? Thank you so much for your time and all you do!

Sorry…but you need to be eating gluten since the tests show your body’s response to gluten. Yeah…I know…it sux. This is probably the question I get asked the most. Is it worth it? I can’t answer it for you. Personally, for a lot of reasons, I’d want to know if I was celiac. But that’s just me.

Q: Do you have any leads on gluten-free resorts, anywhere? Thanks

I talk about my most recent vacation here. It’s not a resort, but it certainly was paradise (and gluten-free). A quick Google search for gluten-free resorts brought up these results. Happy travels.

Q: When I had my endoscopy 4wks ago, I wasn’t even anesthetised when they started! They put the mouthpiece in (sorry, layman’s term) and started sliding the scope in – I tried to grab the scope and was panicking but the nurse just held my arm down. So there I was bawling, trying to be brave about it (my GP had reassured me “don’t worry, they give you the good stuff!) and watching the doc open sterile packages and mess with equipment. I guess at this point they gave me some type of “amnesia inducing” med I read about after doing research on it. I was still aware of what was happening and never did fall asleep. Going back to the recovery room I said to the nurse – I was awake for the whole procedure! She just looked at me and said – well that’s unfortunate!!! I sat in recovery and glared at every nurse that went by and when I finally got to see the doc post procedure I asked my two questions and got the hell out of there! Now I’m kicking myself for not going ballistic on him, but I think I was still in shock! My question to you is, what level of anaesthesia should I have reasonably expected for this procedure?? Does every GI doc have a different protocol?

That is just awful…absolutely awful. I swear the more stories I hear, the more I think getting a good doctor is a total crapshoot. I will say this: I’ve had two endoscopies and was out cold for both of them. I cannot imagine being awake. What is wrong with these doctors??

Q: I’m 14 and live in a family where they love gluten foods, and they keep bringing gluten products into the house… Especially my dad. I’ve tried to tell them how it effects me but they don’t what it feels like to even breathe in gluten, though my mom tries the hardest to understand she still sneaks in a little gluten once and awhile. Every time I go out with my friends somewhere, or just leave the house for concerts or youth group they bring in gluten. They’d bring pizza, or crispy chicken, etc… Thinking I won’t notice the gluten in the room, I’ve told them, even the tiniest of crumbs bother me. My dad says don’t eat the crumbs, and I tell him I don’t need to eat the crumbs to feel terrible. Sorry for going on… But how do I get it through to them that I’m struggling with it?

Sorry to hear you are not getting the support you desire. That can be tough. Keep communicating with them and educating them on celiac a bit. But I will say this to you. Try not to live in fear. You cannot get sick just from being in the same room as gluten. You have to eat it to get sick (unless we’re talking about airborne flour or something like that.) If your family and friends insist on having gluten, don’t withdraw from them out of fear.

Q: Today my coworker gave me a printout from our local grocery store that had Gluten Free Lean Cuisine. Not being the healthiest of options anyways, I was curious and went on the site to see what they could have possibly come up with as gluten free options. Disappointingly, on their “gluten free” option I found things like 2% or less of the following ) – wheat gluten, hydrolyzed wheat flour, bleached white flour, and wheat (soy sauce)- not on all products, but some. I know you have lots of people who follow you, so I just wanted to send this and maybe you will inform them to STAY AWAY from these products.

Hmmm…just went to the Lean Cuisine website and the first thing I saw was Gluten-Free Chicken Marsala. And in the ingredients: hydrolyzed wheat gluten. Stay away! I believe they are actually breaking the law since legally it can’t be labeled gluten-free. I will definitely follow up on this. Thanks for pointing it out.

Q: Is there a good resource of gluten-free alcoholic beverages — and especially those that are not?

Funny you should ask.

Cheers everyone!

cheers

“Sometimes you wanna go where everybody knows your name…” C’mon, sing it with me.

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29 thoughts on “It’s Monday Mailbag!”

  1. Vitamins and minerals : in Europe we have the brand “SOLGAR” which is gluten free (and I think dairy free). I dont know if you can find it in US (maybe on internet).

  2. I take MegaFoods multivitamins. I use calcium/magnesium from Country Life. Also use their Vitamin D and B12. All are GF. For GF nuts, we order from nuts.com. We also order some GF baking items from them. They have a GF division. Products are certified GF and made in a dedicated area. Many of the nuts I used to eat didn’t state anything about shared equipment, but when I contacted the companies, found that they were. And companies change (especially Trader Joe’s I have found) their processing facilities, and I get paranoid and tired of calling all the time, so I just use nuts.com. More expensive but worth the peace of mind.

    My husband is so awesome and got on the GF bandwagon with me after I was diagnosed, so our home is GF. I feel for people who live with inconsiderate non GFs! And at work, they made one of our three lunch tables a GF table. It started out as somewhat of an offhand remark by one coworker that we should do this, then someone made a skull and crossbones sign for the table saying GF…and over a year later, my coworkers still respect the GF table, which is still decorated by the original sign!

    Good job on the mailbag selections, Dude, good spectrum of topics, thank you.

    1. Forgot to mention the Megafoods multis also have minerals. Best price I have found in stores, is at Sprouts. Interested to hear if anyone knows a more cost-effective place.

    2. Seconded nuts.com. Also edisongrain.com!

      My doctor said I had some abnormal blood tests that led him to believe I was still getting glutened…we traced it to a bag of nuts from shared equipment. Someone had replaced my usual bag and I hadn’t realized! A LOT of nuts are from shared equipment.

  3. Some of these questions make me crazy- knowing full well if these folks were in a support group ,. all of their questions would have been answered. Vitamins: I have been using Nature Made or Nature’s Bounty for totally gluten -free vitamins for years: B12, Mutl-B complex, D, calcium/zinc/magnesium. I also use Puritan Pride (online only) are gf, and this is the company that makes vitamins for many of the private label and other houses. My numbers are perfect while taking these so I do not believe it is necessary to spend a fortune on vitamins.
    The adjustment to celiac for kids is extremely difficult- bad enough for adults, but teenagers especially have an awful time. Dude, keep pushing your blog– The Gluten Intolerance Group N. A., also has a teen forum.
    Liquor: Many years ago it was thought liquor, vinegar, etc contained gluten. The truth is, ANYTHING that is distilled- Scotch, Rye, whiskey, vodka, etc, and yes vinegar (except malt vinegar), is gluten free. That said, the stuff we have to watch out for is cordials, mixed drinks, drink mixes!, and the like- many of these products contain barley as a sweetener. So always read labels for contents. When in doubt, don’t! Or call the company. Wines are ok too unless for some reason they are flavored.
    As for families who do not support another family member: this is despicable behavior and also common. Our support group does help deal with this problem and the best advice is, keep at it. Eventually they come around.

  4. I’ve been gluten-free for 3 years – I only get neurological reactions (negatives – anxiety, stress, rage, ADHD, depression). Never tested and too late to BE tested. So, I stay away from airborne gluten, wash my hands after handling my son’s toast (or make him do it – he’s 7), and otherwise do my best to avoid the ‘poison’. I’ve never had any digestive issues I’d relate to gluten. I get joint pain from nightshades (tomatoes, potatoes, peppers).

    Referencing the Alcohol question – not all of the ones listed on your blog are available everywhere. I’ve managed to find 5 Gin products made at Canadian microdistilleries made with either corn or grape, as well as a few different brands of vodka. I can provide you with links to the posts about gluten-free alcohol, if you’ll allow it? (I’m a hobby mixologist)

  5. I was awake for my endoscopy. They used something is believe is called conscious sedation. It relaxes you and blocks pain but you are awake and aware. However then you kind of sleep it off and can’t remember what happened while you were sedated. It’s a really weird feeling!

  6. That is extremely interesting about the Lean Cuisine. I tried the Chicken Teriyaki stir fry and totally missed that it had regular soy sauce in it. I also had the pomegranate chicken which is ok. Definitely not going on the recommendation list now!

    I wonder if there’s just enough gluten to be under the 20ppm limit and that’s how they’re doing it?

    1. Lean Cuisine said that all the wheat had been processed to the point that the gluten was removed (to 20 ppm I assume).

      They use fully hydrolyzed wheat gluten. Apparently fully hydrolyzing the wheat breaks down the gluten, but I’m not sure what the latest research/long term safety is on that?

      I’m personally not comfortable with eating it. I can’t tolerate processed foods anyway.

      However it does seem that they’ve processed out the gluten to the point the product does fit the labelling requirements. Time will tell if people react.

        1. Yes quite! This does set off some alarm bells. I’m not aware that gluten-removed wheat has been ultimately proven safe for celiacs. My hunch is lean cuisine wants to jump on the gf bandwagon. Personally I think gluten-removed wheat is sketchy..

          1. My fear is that “gluten removed” is really “gluten made invisible to tests for gluten”. Whether it will affect our bowels is another issue entirely.

  7. I had a endoscopy and colonoscopy done without sedation because of the neglect of the nurse At the hospital who failed to properly administer the sedation. It is such a trauma. Please file a complaint with the facility and state boards. It is the only way it will these incidents will be stopped. Also confront the doctor, he is responsible for his patients during a procedure.

    1. I had my first scope done 15 years ago with no sedation– I refused to have another one unless we used sedation… Sedation is awesome.

  8. Regarding the reader’s question about nuts, I was referred to nuts.com and have been happy with them. I don’t love paying for shipping, but the more you buy, shipping is less per pound (i.e. a super heavy package isn’t crazy expensive to ship). They have tons of nuts and dried fruits that are gluten free.

    1. I always use nut.com. I never feel right from other nuts (insert joke here). It is expensive but I know it’s gf and you can’t put a price on that ๐Ÿ™‚

  9. Sorry Dude,
    I have to contradict your statement: “You can not get sick by just being in a room with gluten.”
    I know I was glutened when I volunteered to help bake Christmas cookies for a charity. It never occurred to me that sprinkling the counter with flour and rolling out the dough would be enough to make me sick. It was and did.

    1. Yes Jacqueline – I’ve heard of contact and airborne gluten sensitivities too – people can’t walk past a bakery let alone bake cookies. I’m even wary about handling my son’s sandwich bread and wash thoroughly after being in contact with something made with gluten. (I chewed out one of the floor managers at a grocery store about their placement of gluten-free goodies – told them they weren’t helping sell their product by not only burying it in the bakery, but having poor signage AND putting the packages in contact with gluten filled products).

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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 didnโ€™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, Iโ€™ve done my job.

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