It's Mailbag Time…Springsteen-Style

bruce springsteen mailbag

If you’ve been following my blog, you know I’m a big Bruce fan. Grew up in the same town, followed him since I was in diapers (age 10…don’t tell anyone). The man’s music just speaks to me.

And if you’ve been following my blog, you know that I get a boatload of emails asking for advice/assistance/comfort/guidance/companionship. I made that last one up.

My point is I’m way behind on emails which I always feel really bad about. And as I’m writing this post, I’m cranking some Bruce. So why not combine the two!

I will answer each email to the absolute best of my ability and throw a Bruce lyric in every answer.

You say it can’t be done? I say it just takes a leap of faith to get things going.

(See…we’re starting already.)

Ok…let the games begin. And as always, if you have any input (in other words, if my answers suck), please chime in…no Bruce references necessary.

Q: I try not to be too sensitive about being laughed at because I have celiac disease and live a gluten free life. But this week, I have had enough. There was an article on Yahoo about making lemon cupcakes with a “secret” ingredient based on those served in the movie Great Gatsby. So OK, I looked at it. And the secret ingredient? Gluten free flour. Then the article stated to make these for all your “gluttard” friends! Really??!!! Gluttard???

There will ALWAYS be ignorance in this world. No one laughs at himself more than I do (for good reason might I add), but this stuff seriously gets to me too. Spend a day on Twitter. It’s full of this crap. Don’t let it get to you. All we can do is try to rise above it. We’ll keep pushin’ till it’s understood, and these badlands start treating us good.

Q: I was diagnosed with CD by my pcp at the beginning of April and I was actually seeing my GI the day I got these results and my GI decided to do a more confirmatory blood test. The test was done and I started my gluten free diet. However nobody realized the results never made it back to her office and they couldn’t be found so my GI did more blood work after 12 gfd weeks. I got normal results which I expected and started my own gluten challenge. I have a biopsy scheduled soon but my body has literally been failing me pretty much everywhere, muscles, migraines, joints, lactose intolerance. While I was on my 12 wk gfd I ate like crazy but did not gain a single lb. and my GI is wondering if I have CD at all. Do u have any suggestions?

Sounds to me like your GI doesn’t know what he/she is doing. I’m not sure if you ever got an endoscopy but that is still the gold standard. Blood work by itself is only part of the equation. Don’t short yourself. Get an accurate diagnosis. I know it’s frustrating. Counting on your doctor is like counting on a miracle to come through.

Q: Long story short after being admitted to hospital with severe anemia, dehydration, and in renal failure, I was tested for everything under the sun, blood work came back i had celiac and confirmed by endoscopy. This was in June of 2012, I have been gf since but there are times I get sick mostly when I eat a new product that claims to be gf or when eating out from a gluten free menu. Anywhich ways, in one of my gf mags I saw ad for Gluten Ease pill and I would very much like your thoughts on this pill. I was interested in it for the times i do eat out.

The celiac experts at the just-passed ICDS mentioned these types of products. The verdict: don’t waste your money. Personally, I hate these types of products as it gives people false hope. Still at the end of every hard day, people find some reason to believe.

Q: Diagnosed with Celiac a few weeks ago. Until very recently, never had any symptoms, don’t have any nutritional deficiencies, always been ok with digestion, etc. Pleasantly surprised that my diet won’t change that much – I’m already one of those crunchy granola types who doesn’t eat a lot of processed foods anyway. My husband has gone gluten-free and we’re doing all the “right” things (gluten free kitchen, bringing our own foods to parties, etc.). But, I just can’t get past the sheer terror that I’m going to develop some other autoimmune disorder, food allergy or intolerance. Almost every single response to every question/blog on the internet seems to devolve into a list of ailments and related disorders celiacs have or will get. What gives? Am I destined for diabetes, lymphoma, infertility and “cross reactivity” to virtually every food on the planet?

Yes. Just kidding. NO!!! Stay the course and you should be totally fine. No guarantees of course but there is absolutely no reason to live in fear. You wake up in the night, with a fear so real. Spend your life waiting, for a moment that just don’t come. Well, don’t waste your time waiting. We have to live our lives, right? Oh…and there really is only one gluten free blog you should be following. Just saying 😉

Q: I just hit my one year since celiac diagnosis mark and was feeling pretty damn proud that I have been mostly successful at navigating GF living. I was talking to some friends about how I was feeling and got a seriously disheartening comment back, “Your diet is really working. You seems so much healthier since you have gone GF; maybe I should try it.” This friend has struggled with weight loss and is always looking for the magic bullet. I was furious that she was viewing GF as possible weight loss diet. I guess she hadn’t listened to any of my ranting over the past year. I wanted to shout, “Just put down the damn Twinkie and you’ll feel better!” It made me so depressed to think that a friend who has been with me through it all could still not get it and view my “diet” as a choice. When strangers make callous comments it sometimes stings but I can blow it off pretty easily…when a friend who has been there for the good, the bad, and the diarrhea makes those comments…it just hurts.

First off, be careful of making Twinkie references on this site. (Some of you out there will get that joke.) Your friend, while careless and callous with her words, is probably frustrated with herself and like you said, is looking for that magic bullet. If she has been there for you through the good, the bad and the stinky, I would say cut her some slack. Perhaps she’s lacking some confidence. Maybe there’s a sadness hidden in that pretty face, a sadness all her own. If she’s been your friend all this time, it’s time to be hers.

Q: First of all, thank you for your awesome blog! I can’t believe it took me this long to discover it! Anyway… as a celiac of 10 years, it is part of who I am. I was wondering what my responsibility is in guiding other celiacs. Gluten Dude, I have met 3 diagnosed Celiacs who are open about how they constantly cheat on the diet because they just “don’t feel well for a little afterwards.” The teacher part of me wants to help these people and lecture them on the long term effects but the social side of me says nobody likes a lecture, and presumably they did their research. They have all said “well I don’t have it as bad as you.” Is there a polite, non-social-suicidal way to tell them, “Well, I projectile vomit now, but every Celiac gets permanent damage later?” or something? Is anything I say really going to help them anyway?

Wow…great question. Look, pretty much everyone has access to the truth about celiac disease. Whether they want to live in the truth or not is up to them. But honestly? I hate people like this because it makes it that more difficult for us to be taken seriously. You want to cheat? Go ahead. Cheat and die young. That’s your choice. But just keep your dang mouth shut about it. As for your actual question…I can’t answer for you, but if it was me…I’d say something. First I’d try educating them and if they aren’t responsive, I’d say this: Girl, you want it, you take it, you pay the price.

Q: What is your advice for having non-celiacs as long-term guests in your home? Recently, my husband’s parents had to move in with us due to work layoffs. I’ve tried to explain the situation to them, designating gluten free areas and utensils. They try to understand, but still look at me like I grew a second head. I don’t want to ruin our relationship. They are pretty awesome people. They just can’t seem to get that yes, that pasta has gluten in it, and no I can’t eat that chicken you made because of the marinade it is doused in……How do I keep my kitchen and my gluten-hating body safe from them and not act like a complete control freak and unwelcoming daughter-in-law??

Your health comes first. End of story. If they can’t be as careful as you need them to be, then you need to keep your house completely gluten-free while they’re there. And if they argue with you about it, tell them there’s a darkness on the edge of town and they are more than welcome to stay there.

Q: I am so frustrated with trying to eat out!! Every time I do it, I order things that should be gluten free…meat and veggies…seems simple enough. Yet, sometimes my simple order comes with a big piece of bread on top of the plate. Other times the food looks safe, yet almost immediately after eating I start having symptoms…pain, nausea, diarrhea. Eating out is such a social thing. Most of the time when we get together with friends or family it is at a restaurant. What can I do to stay free of symptoms? I tell the wait staff that I’m celiac and absolutely cannot have certain foods. They either seem to have no clue or just don’t care.

I only have a handful of restaurants in my area I eat at. They know me and they take care of me. But there are still times that I need to eat at places I haven’t been before. All I can do is give my speech about being a “severe celiac” and that “I can’t have gluten anywhere near the plate.” I advise what they need to be careful of (flour, bread crumbs, sauces, etc.) And then I order the safest possible thing, whether it’s on the menu or not. Plain fish/meat with a side of veggies. I know…not that exciting. But if you are with good company, the food will just need to take a back seat to the people. Do your best to enjoy your night out. You just need to understand this fact: eating out is a risk and there’s a chance you’ll get hit. It’s just the celiac fact of life. And if they restaurant doesn’t care? Let them know that, speaking for all celiacs, we’ll run till we drop and baby we’ll never go back.

Q: I was diagnosed with Celiac this past Wednesday the 11th (blood test). Apparently it developed from a giardia (stomach parasite) infection?! My endoscopy is next Friday. I’ve been gluten free since the diagnosis. Here are my super dumb newbie questions….(and throw in a little I’m scared and find that half of what I read on the Internet isn’t helping.) 1. My doc say I don’t need to be on gluten for the endoscopy test and that I should be gluten free now. But most of what I read online says you need to stay on gluten for test to be accurate? 2. I read all about the one crumb of bread or cross contamination of a knife in a gluten filled food is to be avoided. Really, that minute amount. And what happens….do I get more of the same symptoms I have now? Does it vary in each person? But does it still cause the damage to my intestines? I’m really confused as to the sensitivity. I’m not looking to eat gluten, but wondering about accidentally having it?

There’s no such thing as a dumb question, I assure you. 1) As far as I know, yes you need to be on gluten for an extended time for the endoscopy to be accurate. Now since you’ve just recently been diagnosed, odds are your intestines are still showing damage. But I would reconfirm with the doc. 2) No more gluten…for life…period. Yes, even small amounts can do damage, whether you have symptoms or not. Probably not what you wanted to hear, but it’s the hard truth. You make up your mind, you choose the chance you take. Do yourself a favor…don’t take any chances. Stay healthy my friend.

Q: I have a question about accidentally consuming gluten. I just found out I have gluten sensitivity about a month ago, and I am struggling because it is so easy for food to get cross-contaminated. I read an article recently that said it takes 6 months to a year for the damage gluten causes to be healed. I’ve accidentally consumed gluten a couple of times already (whether cross contamination or just a mistake) and I am losing hope… I feel like no matter what, I won’t make it 6 whole months without a slip up.

I know you’re new to this, but I would not agree that it’s “so easy” to get cross-contaminated. Sure…it can happen to the best of us. But honestly, with a bit of due diligence, you can keep it to a minimum. Be your own best advocate and you will be just fine…I promise. If you see gluten anywhere around you, just remember you can look but you better not, no you better not, no you better not touch.

Q: Just came across your blog and this is seriously a godsend. ANYWAYS i was wondering if you know anything about taxes and gluten free expenses. I know that you can write off specific gluten free foods if you keep the receipts but what if you don’t buy them because they make you sick? Part two: Any tips for dating a non-GFBF? I know now that he needs to brush his teeth and wash out his mouth before kissing me but anything else?

In the states, I believe you can write off the difference between the normal price and the gluten-free price, but like you said you need to keep receipts, etc. Way too much work for me for what I’d get back. Not that I have two grand practically sitting here in my pocket, but still. As for part two, well…you asked. See this post.

Q: Honestly, I never ever email people out of the blue but i wanted to just say thanks! Thank you for allowing me to keep up with the gluten-free world through your site. You not only crack me up you also inform me in a straightforward way. We are new to celiac (my 5 year old daughter was just diagnosed this summer) and I am learning as quickly as I can. It is easy to hate the folks who make our worlds harder but I really just want to focus on making the world safer for my daughter. Thanks again for helping with that task!

Love your attitude. Love your spirit. Keep doing what you’re doing. After all…it ain’t no sin to be glad you’re alive.

Ok…that’s it for me. Three hours of mailbag and listening to Springsteen and I’m getting Bruced out. Just kidding…that’ll never happen. If you’ve got 8 minutes, watch the following. The E Street Band at their goofiest. Pure entertainment. See you next mailbag.

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25 thoughts on “It's Mailbag Time…Springsteen-Style”

  1. I was actually very honored to meet Bruce Springsteen for a few minutes back in 2008 before he performed in the NY Giants Stadium. One of my mom’s tarot card images was selected for the icon for the “Magic” album and through many calls and negotiations, we were able to meet him. He was a really nice man. Very funny and a great storyteller. I’ll always treasure those amazing few minutes!

  2. Side note: My husband is from New Jersey and a Springsteen enthusiast so I was cracking up at the lyrics embedded in these wonderful answers!

    Real question: I have a question that arose from reading your responses. You said, “No more gluten…for life…period. Yes, even small amounts can do damage, whether you have symptoms or not. Probably not what you wanted to hear, but it’s the hard truth.”

    I am about 9 months into my celiac diagnosis, not severe symptoms (yet). After reading your blog, I got concerned because, while we live mostly GF, I don’t have a sectioned off part of my kitchen or separate cooking utensils, etc.(yet)

    So I talked to my PCP to ask about the risk of cross-contamination, if I should take more cautionary steps, etc. and her response was that I should listen to my body. If I’m not feeling any symptoms, I should be fine. Part of me wants to believe her and part of me thinks that she doesn’t really understand this disease and I should consult with a different doctor.

    Can you explain further about the damage with no symptoms?

    Thanks!

    1. “we live mostly GF, I don’t have a sectioned off part of my kitchen or separate cooking utensils, etc.(yet) So I talked to my PCP to ask about the risk of cross-contamination, if I should take more cautionary steps, etc. and her response was that I should listen to my body. If I’m not feeling any symptoms, I should be fine”

      You need your own utensils and your own dedicated prep section.
      You cannot live “mostly gluten free”–you need to live completely GF.

      Your PCP really does not understand celiac disease if she makes such ridiculous comments. She is totally wrong. People who seem asymptomatic can still be causing damage by ingesting gluten, even in trace amounts. You really need a GI doctor well-versed in CD for appropriate follow-up care.

      Please read:

      Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

      Please read about cross contamination and how to prepare your kitchen from a reputable celiac center.

      http://www.cureceliacdisease.org/?s=cross+contamination&post_type=faq&submit=Search

      And start making changes soon. The risk of developing further AI diseases, lymphoma, etc., is very real if you do not eliminate possible sources of cross-contamination. You need to be your own best advocate and learn all you can about CD. Good luck!

      1. Hi Irish,

        Thanks for the advice and the resources. I will definitely check them out.

        One clarification: I live 100% GF. My husband is mostly GF but not 100% since he does not have celiac or any gluten intolerances. Our two young children are not GF. So, while I do not consume any gluten, my house is not GF.

        I truly appreciate the advice and the support. After reading this blog and seeing people’s kitchens, I really started to wonder (and worry) about cross-contamination. Thanks for sharing your knowledge with me.

      2. I have to share with ya’ll what my GI dr. told me last week at my 1st follow up visit since my celiac diagnosis and me complaining about acidic diarrhea. “Once your gut heals (the villi) you can eat barley and oats.” Then he asks me, “Why are you taking probiotics.” I told him, “To keep my gut healthy.” He proceeded to tell me that there is no benefit in taking probiotics. I looked at him like he just ate a squirrel. Baby we were born to run…

        So I need some research about taking probiotics for celiac disease patients. Anyone? And when I go back to see him in a couple of weeks after some tests, research on why people with celiac disease cannot have any gluten…. I will research myself but if anyone wanted to help out or have some of these answers already that would be great.

        Thanks

        1. ARRGH!!!
          barley ? are you freakin kidding me?
          Jules, this guy has no idea what the hell he is talking about. Do not stay under his “care”!! He’s nuts. I would never, ever trust my follow up care to a GI doctor who does not know what GLUTEN is or what the treatment of celiac is.

          (And yes, you can eat oats–but certified G F ones only)

          RUN, do not walk….to another doctor..

          and probiotics are absolutely helpful for replenishing the gut and repairing the GI tract. My GI doc does not agree with yours at all.
          And neither does this GI doctor –a Digestive Diseases Specialist.

          http://thefooddoc.com/probiotic_facts

          I sincerely doubt bringing this dinosaur any reading material is going to change his views –and his obvious ignorance about celiac–but good luck with trying.

          Google Univ. of Chicago Celiac Center and get some facts sheets for him.

          1. No kidding is right, IH! Advising a celiac that they can eat barley? I could easily see this guy getting sued for malpractice.

          2. Thanks IH, I’ll be looking around for another GI dr. but in the meantime I will bring him some info as discussed.

    2. I myself have pretty noticeable symptoms when in contact with gluten, and I want to tell you that you really need you’re own kitchen area, especially if you’re an officially diagnosed celiac. When I first read online that I was supposed to have my own utensils and kitchen space, I thought that people were taking it a little too far and that wasn’t really necessary. But I was still feeling at least a little sick all of the time. Not full on glutening symptoms, but definately not 100 percent well either. When I finally broke down and bought my own skillet and utensils I felt better than I felt in years.

      So yes, I believe even if you don’t react very strongly it is extremely likely it’s still hurting you.

  3. This is off topic, but you mentioned the few places you feel safe to eat at, could you please list them? I live in Jersey and it would be nice to out and not be poisoned. Thanx.

  4. On the post asking about glutenese. Personally I keep gluten-zyme around my house for emergency use. The big thing with these products is they DO NOT allow you to eat whatever you want like advertised. In my experience, they do help lessen the agony when you have been accidentally glutened.
    So basically when my going out with friends should have been safe meat & potato has me vomiting in the parking lot, starting to double over, bones burning pain. I will take the gluten-zyme. It doesn’t stop the agony but it helps me reduce time & severity of symptoms. As most of us know a single day in agony & a week of feeling “off” is preferable to the 3 days of “kill me now”.
    These products aren’t going to allow you to eat pizza or a doughnut without damage. But my experience it saves me from a week in bed.

  5. Loved the Bruce lyrics!

    I have sporadically posted this because it has helped me and it might help all of you too ….I have had celiac for about 13 years now and a few years ago I started taking a really good probiotic and now when I get glutened accidentally my symptoms last about a week instead of 2. It took a while for that to happen, I noticed after taking them for about a year, mostly every day, and atleast 3 x week.

    1. Probiotics are amazing! I take one a day religiously, and now even when I know I’m glutened, my symptoms are half as severe as they used to be. If I know I’ve been glutened I double up on my probiotics and live off of Kombucha tea. It helps me tremendously.

      1. I am a huge “probiotics pusher” for celiacs and any others with GI tract symptoms.
        Upon diagnosis, testing revealed no detectable “good guy” bacteria in my gut–that’s nearly impossible. I was very sick, but probiotics turned my gut around–and my health slowly improved..
        I take them daily and if accidentally glutened (or when I had the stomach flu last year, which is really just bad gastritis i.e. GI tract inflammation) I double up the dosage for a week and I recover rapidly.
        Good stuff–those good guys. 😉

  6. Haha! I don’t even listen to Bruce Springsteen (hope my comments don’t get banned from now on for saying so) but loved how you crammed those lyrics in there. Great format and great advice.

    To the person asking about autoimmune diseases…totally agree you shouldn’t live your life in fear (even though I do). That said, Peter Green reports in Celiac Disease: A Hidden Epidemic that the older you are when diagnosed with celiac disease, the more likely you are to have an associated autoimmune disorder. At age 20, 30 percent of the studied folks had another autoimmune disorder. ACK!

    Then again, the associated disorders all have their own treatments and remedies, and none of them are fatal. So I say let come what may, and deal with what comes IF (not “when”) it does. GOOD LUCK to you and to us all.

    1. Two revisions to that comment to avoid being incredibly confusing:

      “IF DIAGNOSED at age 20…”

      and “Then again, the associated AUTOIMMUNE disorders…”

      Since, yes, there are some potentially fatal illnesses, such as cancer, that can follow from uncontrolled celiac disease—but the associated autoimmune diseases can all be dealt with. And cancer, etc., is much less likely to happen if you’re on a good gluten-free diet.

      OKAY, enough fear-mongering for one day. (And, truly, I hope my comments don’t make you feel afraid. As Bruce would apparently say, don’t waste your time on fear.)

  7. Someone in the main post asked about medical expense claims for GF foods, so I thought I might expand on GD’s response, at least for folks like myself living in Canada who might not be fully aware of the situation up here.

    There’s no specific GF expense claim by itself, but the Canada Revenue Agency allows claims the incremental cost of GF foods (and food ingredients such as flours, etc.), as a part of the regular medical expenses claim (link below). I’m not a qualified tax consultant but I do my own taxes every year so my comments are based on my own experience.

    You would be refunded about 15% of the total cost of your medical expenses (of which the GF claim is a part), AFTER a deductible equal to 3% of your income. So for example if you earn $50k then the deductible is $1500 and there’s no refund for a total expense claim (GF claim plus everything else) less than this.

    You’d only get refunded about 15% of the amount exceeding $1500 (e.g., a $30 refund on a total claim of $1700). As GD says it may not be worth the trouble of managing all the paperwork, but at least you don’t have to submit receipts if you file electronically (though you do have to keep these anyway in case of an audit).

    There are other measures in the Canadian tax code that might possibly allow for a larger refund (I’m thinking mainly of the “Refundable medical expense supplement” on line 452 on the back page of the main tax form (Form T-1)).

    Many details depend on your individual tax situation. If you’re not already claiming GF expenses you might decide to do so for one year and then decide if it’s worth it every year. It might depend on how much the rest of your medical expenses cost.

    I suspect for many people it would not be worth it. As GD himself has documented elsewhere in this blog, many of these GF foodstuffs (which would be eligible) are not all that healthy. And I suspect GD would agree that for anyone who’s celiac, these foods shouldn’t be eaten in large enough quantities to make the refund really worth it. I suppose the “best” case where it would be most worthwhile is if both partners of a couple (and possibly children also) were celiac. In this situation I believe one partner can claim the total medical expenses of the whole family (preferably the lower-income partner would do this to make the 3% deductible lower).

    Just maximise the naturally GF fraction of your diet that your body can handle and consume as little of the rest as possible. This has been my philosophy since I was DX’ed 6 months ago and I’ve found that I’ve only had to increase my food budget by about 20%, which has eased the management of the sacrifices I’ve had to make.

    http://www.cra-arc.gc.ca/tx/ndvdls/tpcs/ncm-tx/rtrn/cmpltng/ddctns/lns300-350/330/clc-eng.html

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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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