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25 Comments

  1. 1

    Rachel

    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!

    Reply
  2. 2

    Alli K

    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!

    Reply
    1. 2.1

      IrishHeart

      “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!

      Reply
      1. 2.1.1

        Alli K

        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.

        Reply
      2. 2.1.2

        Aloha Julie

        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

        Reply
        1. 2.1.2.1

          IrishHeart

          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.

          Reply
          1. 2.1.2.1.1

            John

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

            Reply
          2. 2.1.2.1.2

            Aloha Julie

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

            Reply
    2. 2.2

      Anna

      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.

      Reply
  3. 3

    Lexi Beine

    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.

    Reply
  4. 5

    Lexi Beine

    Go out^

    Reply
  5. 6

    thetxlady

    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.

    Reply
  6. 7

    Kathie

    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.

    Reply
    1. 7.1

      Anna

      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.

      Reply
      1. 7.1.1

        IrishHeart

        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. ;)

        Reply
  7. 8

    Molly (Sprue Story)

    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.

    Reply
    1. 8.1

      Molly (Sprue Story)

      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.)

      Reply
      1. 8.1.1

        Gluten Dude

        That’s funny…I thought I read that you didn’t listen to Bruce Springsteen. Better check my glasses ;)

        Reply
        1. 8.1.1.1

          Molly (Sprue Story)

          Darn typos! Obviously I meant, “I only listen to Bruce Springsteen; who else is there?”

          Reply
  8. 9

    John

    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

    Reply
    1. 9.1

      Gluten Dude

      Thanks tons for the info John!

      Reply
  9. 10

    John

    Speaking of Springsteen, I see a fan paid $300k at an auction for a lasagna dinner at the Boss’s home. At that price it must have been a gluten-free lasagna.

    http://www.avclub.com/article/fan-pays-300000-eat-lasagna-bruce-springsteens-hou-211536

    Reply
    1. 10.1

      Gluten Dude

      I hope at least Bruce was gonna be there ;)

      Reply

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