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84 Comments

  1. 1

    Rachel

    I was extremely upset when I first was diagnosed with Celiac Disease. I was angry and really depressed. I cried for days. I felt like my world had caved in. At first I was in denial and couldn’t believe it was true. But after seeing more doctors and getting more confirmations that yes, indeed, I do have it, I slowly came to grips with it. Also, keep in mind that I was at my lowest point when diagnosed, with both my physical and mental state. I was very ill and much more vulnerable. I started having some deep anxiety and depression issues in addition to having severe fatigue and sleep deprivation. So, no, it didn’t come as a relief to me at all when diagnosed. Since then, I’ve slowly become more and more at peace with it, although I still feel quite a bit of anger, depression and frustration at times. But I’ve realized that it does me no good to be really bitter about it, so I’ve tried to work around the frustration as much as possible. Still, it feels like a handicap at times and I feel like it’s got a crippling affect on my social life (including travel and family visits).

    Reply
    1. 1.1

      Becca G

      Yes, agreed Rachel…I still go through many bouts of frustration, denial, etc. usually when I think about how I need to eat this way for the remainder of my life. It can be overwhelming and I think that comes in cycles. Communities like this help so much!

      Reply
    2. 1.2

      Gluten Dude

      You’ve described the cycle quite perfectly Rachel.

      Reply
    3. 1.3

      Jmarn

      I couldn’t have describe my scenario any better:(

      Reply
    4. 1.4

      Kristine Gwoman

      “At first I was in denial and couldn’t believe it was true.”

      Rachel – This was my reaction as well, although I didn’t get a formal diagnosis at the time. I switched from my regular MD to a Holistic Doctor who asked me to avoid gluten for a while to see if that resolved my migraines, stomach pains, and myriad of other symptoms my body had going on… When she first told me I said “really? no more gluten?” because I knew what that meant and I dreaded it. As you said, peace is gained with time, but there are bouts of relapse as to the notion of never regular food (i.e. Pizza) again.

      My next battle is figuring out how to be social and date with such a restricted diet!

      Reply
    5. 1.5

      Jennifer

      I was recently diagnosed, it’s been two weeks and I am a hot mess. My diet my whole life has been pasta pizza and bread. I do not eat meat and very few veggies. I feel so lost and alone like no one understands and people are not understanding at all!even though I am feeling alittle better after hitting rock bottom it is still very hard to accept this disease.

      Reply
      1. 1.5.1

        IrishHeart

        Jennifer
        Please read this thread for newly diagnosed celiacs.
        You’re going to find subs for all those foods and enjoy pasta once more and it gets easier, I promise. Hang in there. :)

        http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

        Reply
  2. 2

    Becca G

    Hi Gluten Girl…welcome to our bandwagon of “gluten-free does not equal healthy!” You are in good company here. :-) It’s so tough to navigate this new lifestyle when people in your life don’t understand, but believe me, there are also many who understand your frustration. I have been GF for a full year now and I am FINALLY feeling like I have found a balance as I eat GF because I NEED to and HEALTHILY because I choose to. I hope you find the encouragement you need in this community and trust me, it gets better as people in your life begin to take it seriously and work to understand it because they love you.

    Reply
    1. 2.1

      Kristine Gwoman

      Thanks Becca G. This site has truly been a blessing. When I was first wadding into the GF world I scoured the web for any and all GF websites I could find, and Gluten’s Dude blog and community struck me as very real place to find community.

      All anyone ever wants is to belong, and since we all have to go though life not eating what the majority of people do, it’s easy to feel alienated. Since I wrote my post things have improved on the family front as well. Most of my immediate family members are considerate of my dietary needs. Just last week we had my grandmothers 91st birthday and my mom ordered pizza for everyone. This is typically when I feel alienated since I would have to bring my own food rendering me ‘special’ but my mom was sooo sweet. She called me up the day before to tell me that she ordered me a Gluten Free pizza so I wouldn’t feel left out. My mom is awesome and for once I didn’t feel like such an odd ball.

      Reply
      1. 2.1.1

        Becca G

        So glad you are finding this community a blessing and that family members are starting to understand. I too had that reaction for such a long time (still do) when someone would mention ordering pizza (or anything else I couldn’t have…like chinese food!). My stomach would drop and I would feel the dread of having to “explain myself” once again or plan to bring something on my own so I don’t have to think about it! It’s amazing though how my mom-in-law specifically (who originally didn’t get it at all) is now the first to say, “I’m ordering a gf pizza so you can have some too!” or she’ll ask me to bring my own bread to make a casserole in which she would have used regular so then everyone can enjoy it. She even made me some gf cupcakes for my birthday…so thoughtful! It just takes time. And when those family members truly understand that you can heal, have a life and function daily now that you are eating properly, they appreciate that and try to accommodate you. I’ll pray that it continues to get better for you and that this community will continue to encourage you on your journey to wellness!

        Reply
  3. 3

    Judy Ochse

    I remember when I lost it. I had been gluten free about two months. I was dealing with it and feeling I had everything under control. Then one day when I was particularly stressed I went to the grocery store and just felt I needed some of my former comfort food. I remember being in the frozen food aisle and looking at all the things that in the past would have made me feel better. Not realizing at the time they were actually what made me sick. It was almost like mourning old friends. I stood there and burst into tears. There was nothing from my past that would be in my cart ever again. I bought some ice cream and went home. What that experience showed me was that going to food for comfort was probably not going to be my way of coping with stress again. I have moved beyond that day to the point where a table loaded with gluten full goodies doesn’t even phase me. I don’t feel cheated, I don’t feel sad. I feel empowered and in control. I am eating so much more healthy and feel so much better. It is a journey and as with all journeys there are ups and downs. Hang in there you will be stronger at the finish

    Reply
    1. 3.1

      Deb

      I still can’t go near the bakery in our supermarket…i don’t feel like I’m necessarily going to cry, although that HAS happened, but it’s the one time I really feel cheated :(

      Reply
      1. 3.1.1

        IrishHeart

        Deb, I wish you lived near me. I could help you with that bakery thing.
        We could do this together.
        Here is what I do:

        When we go through the giant bakery section at BJs,
        I just point my finger at the stacks of stuff and with wild eyes, I say loudly “It’s poison! Poison, I tell ya!”

        It’s fun.

        (My poor husband. LOL)

        Reply
        1. 3.1.1.1

          Deb

          Nope…no bakeries for me yet! I literally run in and out of our Costco bakery to get my UDIs bread so that I don’t throw croissants at the lady offering me samples :/

          Reply
          1. 3.1.1.1.1

            IrishHeart

            Time is your ally. ;) Trust me on this one.
            Just let me know when you want to do a crazy wild woman bakery run.

            Reply
        2. 3.1.1.2

          Peggy

          Oh my goodness IrishHeart you are my kind of person. I love it! I attack the things in my life that are negative with humor and sarcasm. So your “its poison” comment is what I would have said. {peeing myself while laughing}
          You are the fighter I need close by me. Hah you are so cool! I can’t wait to talk with you more.

          Reply
          1. 3.1.1.2.1

            IrishHeart

            We specialize in humor and sarcasm around here, Peggy.

            You can’t beat down autoimmune disease without humor. Stress and worry are not our allies, so find something to laugh about every day. ;)
            Stress creates inflammatory cytokines( and who needs those, right?)

            Read this blog for example! .

            http://wheniwentglutenfree.tumblr.com/

            Reply
      2. 3.1.2

        Luna

        I wish you lived here. We have a gluten free bakery. 100% gluten free. It’s amazing. Also two 100% gf cafes.

        Everyone move to BC! :)

        Reply
        1. 3.1.2.1

          IrishHeart

          BC is GORGEOUS!! :)
          I went there years ago and I still talk about it!

          I had the great blessing of having a 100% GF bakery and cafe
          near me when I was diagnosed. The couple who run that place became some of the best friends I have ever had. They helped me get through the first few years of this healing journey. Laughter, encouragement, and a fellow celiac in Sherry Lynn. Here’s a Big shout out to my peeps, Sherry Lynn and Howie Birch of Latham, NY!!!!

          DEDICATED GF bakeries and eateries are the wave of the future.
          Hang tight, everyone…it’s going to be a whole new world
          and we will rule it.

          (what?a girl can dream….)

          Reply
          1. 3.1.2.1.1

            Jmarn

            I don’t think your dreaming I think your dead on!!!

            Reply
            1. IrishHeart

              whoohooo! :)

              Reply
          2. 3.1.2.1.2

            Luna

            Just heard at church this morning that another gf bakery is opening up in town. WHEEE! They’re going to buy the communion bread there. :)

            Reply
            1. IrishHeart

              whoot whoot!! :) happy for you!!

              Reply
          3. 3.1.2.1.3

            Vanessa

            I’m in Albany!! I get my test results tomorrow. I really don’t need them though. I went to the Fresh Market yesterday and cried my eyes out. I am so angry!

            Reply
            1. IrishHeart

              Vanessa,
              If you mean Albany, NY..(not GA) .take heart! I can give you a GREAT doctor’s name, and there are fully dedicated GF bakeries/cafe and many places to go up there. I know, I lived there until September.

              GD can put us in touch, if you need any ideas! You’re going to be okay!

              hugs, IH

              Reply
            2. Gluten Dude

              Vanessa…if it’s ok with you, I’ll put you directly in touch with Irish Heart. Just let me know.

              Reply
      3. 3.1.3

        Barbara

        Hi, I close my eyes and breathe in the sweet aroma of the bakery department, remembering the taste of a glazed donut, or fresh sourdough bread and thankfully, because our sense of smell contributes to taste, it is almost as real as actually tasting it. I think of alcoholics who suffer as they go by the liquor section… At least I can bake a substitute that is almost as good for that craving and am satisfied. And when I am woeful and there is nothing I can eat at a restaurant with friends, I have a Titos cosmopolitan with that dry salad!

        Reply
    2. 3.2

      Gluten Dude

      “I remember being in the frozen food aisle and looking at all the things that in the past would have made me feel better. Not realizing at the time they were actually what made me sick. It was almost like mourning old friends.”

      Love this…

      Reply
    3. 3.3

      Kristine Gwoman

      Thanks Judy. I went through a similar mourning period, but with each day and social event I find myself thankful (and stronger) that I cannot eat most of the processed foods that others eat.

      Reply
  4. 4

    Deb

    You are SO not alone, GG. You’re going to discover a huge community of fellow Celiacs/gluten intolerant folks who have all felt the frustration you are feeling now…and STILL feel it! The good news is that it gets easier once you start healing, and figure out all the ins and outs of how to manage your new lifestyle, including how to deal with others who have no real understanding of this disease (That part took me awhile!) The frustration doesn’t necessarily go away; there will be days when you want to attack anyone who crosses your path, but it DOES get easier. I was diagnosed 7 months ago with Celiac, and am still learning! I’m mostly now tweaking my diet (in the middle of doing the Whole 30), and dealing with 2 newly diagnosed teenage boys, plus a deployed husband, so needless to say, I have my moments (Gluten Dude posted one of my rants back in Early November after I had a complete meltdown – his community of followers are the BEST!) I still get pissed about this stupid disease and try reallllly hard not to roll my eyes when fellow Celiacs refer to their diagnosis as the best thing that’s ever happened to them, but then I shift my focus to thinking about how awful I used to eat and how terrible I felt, and how much better I feel now! And when I’m feeling like I’m about to go into a complete rage, I’ll visit my FB or Twitter celiac pals, or have a cocktail or splurge on some GF junk (my go to “I’m going to punch someone” snack are GF pancakes – like, a lot of them). Be good to yourself, heal properly by eating clean, splurge on GF snacks on occasion, stop by your friendly neighborhood Celiac/gluten intolerant online community to vent or listen to others, and try hard not to roll your eyes like I do when others are ignorant about all this – they just don’t know…not worth your aggravation, although I’ve been known to have the occasional meltdown and feel GREAT afterwards ;) Good luck to you! Happy New Year!

    Reply
    1. 4.1

      Kristine Gwoman

      Thanks Deb! Your words are a great comfort and SO true.

      “The good news is that it gets easier once you start healing, and figure out all the ins and outs of how to manage your new lifestyle, including how to deal with others who have no real understanding of this disease (That part took me awhile!)”

      I’ve been GF for close to a year now and still feel that I’m experiencing some of the ins and outs, but with any new habit it takes time to get the hang of it. Now that I’ve accepted my food fate, I find I’m not rolling my eyes as much to those who are ignorant of my condition. Also, if they are willing I do my best to educate them.

      I like your approach of only going to the GF junk foods for those particularly stressed out occasions. Oh, and LOVE me some Trader Joe’s GF Pancakes. They are delicious!

      Occasional meltdowns aside, i’m sure things will continue to improve with time!

      Reply
  5. 5

    Donna

    Hate it? I don’t think that “hate it” even begins to describe my feelings for Celiac Disease! I was diagnosed in 2009 and even such a short time ago there was NOT a “gluten free” section in the store! Prices?!?! OH–MY–GOD!!!!! The cost for something that SAYS gluten free on it is absolutely ridiculous!!!!!!! I PRAY that they will come up with a cure–a pill–SOMETHING that will help us rather than “eating” gluten free food!!!! It sure sounds easy doesn’t it? Just eat gluten free!!!! Bull crap! It’s not easy!!!!!!! I took my family out for a celebratory dinner Saturday night. I had a steak and baked potato. Sounds GF doesn’t it? I started with GAS and bloating almost immediately. My poor husband (LOL…even though it’s not really funny he DID suffer that night) could NOT BELIEVE how quickly cross contamination kicks up/in my Celiac! That, of course, was the beginning of the symptoms. I am to the point NOW that even my joints hurt and I’m not sleeping. To my point I guess :) The anger, hate, sadness, gloom, surprise at the cost, sneaky cross contamination…etc…has not gone away. I’m not sure that it will with me. I come from a traditional Italian family and EVERYTHING revolves around food. My MIL STILL doesn’t understand that I can’t eat certain (most) things!!!! “The flour is only on the top Donna!!!!” That’s her favorite saying!!!!!! I have come to the point where I just don’t tell people that I have CD. I just say that I don’t want one…that being a donut, a bagel, a slice of pizza…or I’m not hungry! Whatever! It beats trying to beat into the heads of ignorant people the meaning of CD!!!!! I guess I will get off of my whining soap box now…LOL! I hope that you don’t see the glass as half empty as I still do! See that glass as half full and be positive…LMBO!!!!! AND…FEEL BETTER SOON!!!!! :)

    Reply
    1. 5.1

      Gluten Dude

      We specialize in soapboxes here ;)

      Reply
      1. 5.1.1

        Catherine N

        Ugh. Yeah, I found out by accident that sometimes they reheat the baked potato by dropping it in the deep fryer. (Ordered gluten-free, and the waitress was on top of things, and made a remark to me “He was about to drop it in the fryer, and I reminded him to use the microwave instead”) When I thought about it, yes, it makes sense… but man, how many people, I wonder, get glutened by a baked potato?

        Reply
  6. 6

    IrishHeart

    Before I say this, I know my experience is different than others, but I would like to offer you a perspective from someone who is 3 years post DX and on the “other side” so to speak –as you will be one day. :)

    I am probably one of the few who was ELATED to know it was celiac that was killing me.
    I welcomed the idea that a GF diet would make me well, even though I openly MOURNED the loss of croissants and phyllo dough (because let’s face it, there’s no replicating those…. period)
    I used to bake yummy French loaves and had the most amazing pizza dough recipe down pat after years of experimenting…so, yeah that part totally sucked. (my GF pizza dough recipe is damn close now, thanks to a friend with a GF bakery and some lessons)

    I got out some anger (at the doctors who misdiagnosed me for my entire life and the idea that my culinary world was going to change)
    by tossing my toaster around the back yard .Seriously… You’d be surprised how high those suckers can bounce!! .;) Give it a try.

    The WORST part of this disease is the whole spontaneity aspect of just throwing our camera equipment in the car, driving down some back roads to take pics and dine wherever we damn well pleased.
    I got over that, too. (for the most part) LOL I just pack a picnic now.
    Koolatron coolers plug right into the cigarette lighter and stash behind the seat. I highly recommend those things!.

    For me, celiac does not get in the way of traveling, socializing or anything I do. Honestly. I am not just saying that. I’ve been traveling a lot since my DX. (I did not go anywhere when I was very sick–for 3 years!!– so you bet I’m making up for lost time!)
    It’s just “life” for me now and I have friends who make this easier because they took the time to learn about celiac and how to prepare GF meals without CC issues. If someone in your life doesn’t “get it”–that’s their problem.

    Mourn, get pissed… then get over it.
    It’s the best supportive advice I can give you.
    Hang in there. You’re going to be okay!
    Welcome to the family.:)

    P. S. Do not be too angry about the plethora of packaged GF options out there….or the people who are trying to be encouraging by saying it. I think they’re trying to be helpful, IMHO. It’s all good.. Those GF foods serve a purpose for many people, especially for working moms with celiac kids. I do not eat a boat load of them myself, but it’s good to know I CAN if I wanted to.

    Reply
    1. 6.1

      Deb

      I’m still not where you are…even though I’m thankful to have learned so much about healthy eating, healthy living, etc since my diagnosis, I can’t quite say I’m thankful for the disease that inspired me. BUT, it’s getting easier and I’m not as angry anymore, so GREAT advice you’ve given to this girl :) Btw, I love all your insight…your words of support to me were very helpful when Gluten Dude posted my rant a couple months ago (I’m the one who had a meltdown at the hospital right before my husband deployed – I think he titled it Lean on Me) Thank You! Happy New Year :)

      Reply
      1. 6.1.1

        IrishHeart

        Deb, I am so glad things are getting easier for you!
        I recall your post very well and I am so happy things are better.

        And I do not mean to paint a totally rosy picture of my struggle and I
        am not trying to tell everyone “it’s been great!’ It’s HARDLY been that..
        It was horrible. But not the diet part, just the recovery part.

        I am still learning too and I have other AI issues that plague me, (celiac has plenty of tag-alongs) but I just refuse to let this damn thing beat me.
        :)

        Happy, Healthy New Year to you and your family.
        Safe home for your husband and thank you for all your sacrifices.
        I, for one, appreciate you military wives, husbands and families more than you may ever know.
        xx IH

        Reply
    2. 6.2

      Kristine Gwoman

      IrishHeart

      So many things I agree with in your comment, but what struck me the most was “The WORST part of this disease is the whole spontaneity aspect”

      This above all things is what I am struggling with the most right now. Here is an example. (Well sort-of.) A good friend of mine, that I hadn’t seen in over 6 months asked if i wanted to go to dinner to catch up. Of course I was game, as I missed her dearly, but then she suggested Aladdin’s. Not surprising as we’ve eaten there before, but I hadn’t been there since my GF life started. I used to get the Chicken Pita Pizza, but that was out of the question. While Aladdin’s offers a great variety of GF foods and their menu is very well labeled, I still had to study their menu to figure out what I could and would want to eat. After a good 15 minutes of reading their menu online, I found something that sounded appealing and dinner was a success.

      So for a simple dinner with a friend I had to do ‘homework’ on the restaurant she suggested. This isn’t to say that she wasn’t willing to go someplace else, because she was, but I figured I had to find something else there that would be my go to food. But this is life now, always being prepared, which isn’t such a bad thing i guess in the end. A little irksome and tiring, but not so bad really.

      ” .. Do not be too angry about the plethora of packaged GF options out there….or the people who are trying to be encouraging by saying it. I think they’re trying to be helpful, IMHO.” – totally agree!

      Reply
  7. 7

    Claudia

    I so feel your pain Gluten Girl. I was first dumbstruck and then I was very pissed off. All of the gluten free goodies had more calories as well as increased fat and sugar. The breads such as Udi’s and EnerG were NASTY! The cereals tasteless and bland. At work when I declined donuts, cakes, cookies etc., of course folks asked why. After an explanation, they understood—sort of. At work potlucks, folks would offer and then remember and say “I forgot, you can’t have this”. About 4 months into the diet I developed diarrhea for about 3 months as well and I lost 25 lbs. I was happy about the weight loss I must confess as I weigh what I weighed when I was a teenager.I did hate constant diarrhea however. I had another colonoscopy and found out I have microscopic colitis on top of my Celiac diagnosis. The funny thing is that my second biopsy of the small intestine came back normal. I decided to take hold of my health and cut out almost all sugar and low fiber carbs. Its a roller coaster ride and people think we are “picky” and “nutty” about not eating gluten. My advice rant, rant, and rant some more. Get it out how you feel, because its the first step toward getting better. The Celiac community is here and we are STRONG! Kick the dust from your shoes and walk forward.

    Reply
  8. 8

    Jersey Girl

    GG-

    Great rant. Bleeping sucks. However I am a glass half full kind of girl so I deal. I feel fortunate because gluten is my only allergy and there are so many out there who have multiples. This is a great place to vent, visit often.

    btw, there is still Tito’s. rock on GD.

    XO-
    Jersey Girl

    ————————-
    “I don’t know what gluten is, but apparently it’s delicious”
    John Pinette

    Reply
    1. 8.1

      Gluten Dude

      “It’s the reason we get up in the morning.”

      Reply
  9. 9

    SB

    “I am fairly new to this GF world and still have some mourning to do.”

    It took me 7 years to realize I needed this, so way to fast track!!!

    Reply
  10. 10

    Meg

    I was diagnosed 7 years ago, and there are days where I still get angry about it. I’ll go into a “food funk” as my husband likes to call those moments. Sometimes it can be frustrating as hell when you have to explain to your co-workers yet again that no you can’t take part in the team lunch at “X” restaurant. You’d love to, but even though the restaurant promised that your food was safe, last time you ended up missing a week of work because of a miscommunication in the kitchen. And yeah, it does get tiring hosting every big family meal because you know from experience that despite their good intentions, it is the only way you are going to be able to safely eat because they don’t understand cross-contamination like you do, and you are beyond tired of being a high maintenance guest.

    All that said, most of the time, once you get over the initial shock, things do get better, and easier. You realize that you aren’t getting every bug that goes around the office anymore because your immune system is finally working like it’s supposed to. You’ll find apps like “Find Me Gluten Free,” that can find a GF dining establishment just about anywhere in the US where other members of the GF community have done the leg work for you so you already know in advance if a restaurant is really safe for you, and what exactly you need to tell your server.

    So yeah, go ahead and scream now, get it out of your system. And then start exploring blogs like Gluten Free on a Shoestring of Gluten Free Girl and the Chef and start reveling in the foods that you can eat. Celebrate those things. It does get easier. Also, thanks to “Find Me Gluten Free,” the best GF pizza I have found by far was in an out of the way joint in Seattle. I’d consider moving there just to be able to have that pizza from time to time. Well that and the multiple dedicated GF bakeries in town. Like I said, celebrate what you can eat, it will make those other days, the down days, much easier to manage.

    Reply
    1. 10.1

      Comrade Svilova

      Last winter through the summer, while I was eating gluten free but working at a bakery (thanks doctors for telling me that was ok!) I had a flu or cold every three weeks. Since August 1, I’ve only been sick ONCE (quit the job at the end of July). It’s amazing. High fives to you, and stay well!

      Reply
  11. 11

    Miss Dee Meanor

    I’ve been gluten-free for years and still feel this way everyday at work when I smell the French fries cooking in the non-designated fryer at the fast food restaurant next door.

    Reply
  12. 12

    Lisa Mims

    It’s still not fun, a lot of the time. It did make me learn to cook.

    The hardest thing, I think, is it really lets you know where the rubber meets the road in relationships. I’ve lost more than one boyfriend over what gluten-free really requires. (This one likes my cooking and lets me do all the grocery shopping. =0)) He’s even willing to do apartment shares when we travel, so I can cook overseas, too.

    Reply
    1. 12.1

      Comrade Svilova

      So glad to read that you have a supportive partner! It’s a lot of work to support a celiac/NCGI person and to really make a home safe for them, but anyone who is worth being with will want to make sure their person is healthy.

      Reply
  13. 13

    Lorraine

    Thank you for this rant. Yes……. I’ve been gf since August last year. And I’ve cried, I’ve wept, I’ve had temper tantrums in these past few months. Reading your rant made me realise that I have actually moved on. I think the turning stone was when I really started to feel better. And the fact that my husband got me a huge freezer. On good days I do big cooks and freeze in portions. Today was a lazy day we had cottage pie for dinner.
    Also I think you really have to accept the fact that this is for life. Do I want to spend my life in a bad mood because everyone except me can have pizza. Or do I need to find a way to enjoy life now that I’m feeling so much better. over christmas time were invited to so many parties, if it was at a restaurant I phoned- asked, and if it wasn’t possible I was even able to bring my own food and beer, people can be so nice. If the party was at someones house I enquired about the menu and made similar food for me, most of the time people don’t even realise that I’m different.
    I live with fructose and lactose intolerance, celiac and the tests are running for lupus.
    life is too short enjoy :)

    Reply
  14. 14

    Musicmidget

    I was diagnosed just 6 months ago so I can totally relate to this. There is a mourning period for all the foods you will miss. I think we all go through that. My biggest advice is mourn it, but try not to dwell on it – because it is what it is. There’s nothing you can do to change it and it’s the only way to get well. Period. The harder part is all of the well meaning friends and family who either try too hard to accommodate (when they have no idea what they’re doing) or who think you’re making it all up and roll their eyes every time you mention it. Rely on those around you who are most supportive (my hubby is awesome!) and learn how to deal with the rest. Some will get it, some won’t but those who care about you will try.

    And after a while, the gluten rage will subside. Then you won’t feel like punching everyone in the throat! ;)

    Reply
    1. 14.1

      Gluten Dude

      Yep…mourn and move on. The best advice there is.

      Reply
    2. 14.2

      Jennifer

      I am having a hard time moving on. I am 6 weeks diagnosed and I am depressed all the time. Although my digestion has improved I still am exhausted and my joints ache. I miss pizza so bad that I licked a slice 2weeks ago… I too believe it is what it is but I am having a hard time accepting it.. Going out to eat is a thing of the past. I do not eat meat all I ate was pasta, pizza and bread I feel lost and alone as other than my mom and sister people do not understand :(

      Reply
  15. 15

    Diagnosed in 2013

    I think everyone has been there. At first, I was excited to have a diagnosis – then as I learned more and more, it was intimidating. What finally convinced me this was good anyway was to hear anecdotal reports of people finding things like allergies (environmental) getting better without gluten. I decided for that alone, I’d go gluten free, even if I didn’t have celiac, so that made it easier.

    No question, going out to eat is the hardest part. And with a ton of allergies, my socializing is in restaurants. I can’t go to most houses – if there’s a smoker, a dog or cat (even if nobody is smoking at the time and the pet isn’t present, the residue is more than enough to make me sick for weeks after), any potpourri or air freshener, I can’t go to that house. And that’s about 75% of houses! So the trick will be figuring out how to keep socializing at restaurants – I’m approaching a year GF, and that’s still the worst part by far. And the work lunches – honestly, I’ve always found those the most productive, it’s where you get to know your co-workers, and I find work is more fun and productive if you can partake in those. For me, I’d have to go along anyway and not order anything, I really think they’re that important.

    Food-wise, I miss absolutely nothing. I live in a place with lots of GF bakeries and items, and I’ve found a GF bakery I prefer to regular bakeries anyway (it’s seriously good!), I found I prefer corn pasta to wheat pasta, and because of allergies, I never drank beer or any alcohol except tequila and certain vodkas – so no change there!

    Reply
  16. 16

    Diagnosed in 2013

    One more thing though – most likely, this cross contamination concern won’t be for life. In fact, I’d be surprised if it is the same by the end of the decade. Two different drugs are in testing, one in stage two and looking promising. They wouldn’t allow people to eat gluten, but the idea is they will greatly reduce (or better) cross contamination issues. So the odds that we are all in the same mess a decade from now are very low, IMO.

    Reply
  17. 17

    Gloria @ glutenfreepoodlehome

    First of all I hope you are still eating gluten if you are “soon to be tested for celiac.” I have seen many people on the diagnosis roller coaster with a negative biopsy after eating gluten free.
    I was diagnosed 18 years ago and was happy to find out what was wrong with me as I had been very ill for a long time. However I was told that I had a very RARE disease and had no help getting started. It is much easier to find food now, but I am actually glad I was diagnosed back then. I know how to make my own GF food out of simple ingredients and I do not spend all of that money on the processed GF foods that I have been fine without. I find many new celiacs to be almost obsessed with finding replacements for their junk food habits. It’s much easier in the long run to learn to just let the gluten foods go. Good luck to you.

    Reply
  18. 18

    Molly (Sprue Story)

    “There are so many options now” is definitely one of those things it’s okay for US to say to comfort ourselves, but when anyone else says it, it’s condescending, missing the point, and downright scream-inducing. It’s like saying to someone who lost a limb, “Hey, at least they make great prosthetics now!” Dumb, dumb, dumb. Well-meaning, but dumb.

    “Hey, at least you can pay a premium for the rest of your life for often worse-tasting food that isn’t necessarily nutritious or even gluten-free!” Cool, thanks for that.

    Anyway, it sounds like you’ve got a good head on your shoulders and have done your research about this sucky new disease, so with luck you should be able to heal up fast and get consolation from that. And I do mean luck…I personally am a year into being gluten-free and don’t feel totally recovered. But at least I can gorge myself on Popchips and Udi’s anytime I want! ;)

    Reply
    1. 18.1

      Comrade Svilova

      You hit the nail on the head about who is “allowed” to say certain things. Over the holidays, I was told that “we have to be able to have a sense of humor over what you’re going through” after some jokes about how easily cross contamination happens (no, I get to decide when to laugh and when I can’t laugh about this) and also that “it’s good that you have so much else in your life” (actually, it’s frustrating, because I spend too much time researching every item on my shopping list or explaining to the fourteenth person that day why I’m not eating the departmental lunch, and that interferes with me doing what I want to do). People need to listen more, talk less. Even (especially?) when they’re well-intentioned.

      Reply
      1. 18.1.1

        Molly (Sprue Story)

        “Listen more, talk less.” Exactly! I don’t think anyone NEEDS to be able to laugh about celiac disease except the people who have it (and MAYBE parents of small children who are essentially going through all the work of keeping them gluten-free for them). And we get to come to that when we’re ready, and if we aren’t always up for laughing it off, we don’t have to. That goes for any disease or condition.

        I’m all for making jokes about gluten—I do it all the time—but at Thanksgiving my uncle started saying, “Maybe we should just put a crumb in your food to see if you actually get sick,” etc. Instead of laughing, I got very serious and said I’d been sick for years and it was no way to live, so I wasn’t going to do it anymore, and that shut him down. I felt a little bad about coming off as humorless, but I think the situation demanded it. That’s just not the kind of joke I want to make every holiday until I die.

        Not even sure where to start with “it’s good that you have so much else in your life”…!

        Reply
        1. 18.1.1.1

          IrishHeart

          …”my uncle started saying, “Maybe we should just put a crumb in your food to see if you actually get sick,”

          My response would have been:
          “well, maybe we should kick you in the nuts and see if it hurts?”

          But I’m a wise ass and use humor to diffuse bombs and I get away with saying those things (most times). LOL

          You did the right thing!.

          PS…I have a ginormous sense of humor, Molly, but that remark he made is not even remotely funny.

          Reply
        2. 18.1.1.2

          Gluten Dude

          I just love the way you express yourself Molly :)

          Reply
          1. 18.1.1.2.1

            Molly (Sprue Story)

            HA! Maybe if my mom hadn’t been in such close proximity, I’d have gone your route, Irish. Thanks, GD. :D

            Reply
            1. IrishHeart

              Probably shouldn’t come as no surprise, but honestly, I think MY Mom would be likely to come with that line as well….. lmao..
              Got genes for celiac from both parents…got wiseass genes from both too. :)

              You took the right approach, kiddo!

              Reply
              1. IrishHeart

                gosh, sorry for those typos…

                I meant…” should come as no” and

                “come back with”

                man, I am having a rough typing day today…lol

                GD–we need edit buttons, Please!!! :)

                Reply
      2. 18.1.2

        IrishHeart

        Comrade said: ” People need to listen more, talk less. Even (especially?) when they’re well-intentioned.”

        Ain’t that truth!….about ANY topic, methinks.

        You know what they say about good intentions….

        Reply
  19. 19

    Lisa

    Two and half years diagnosed… Just as bitter and twisted.

    Pet hates in no particular order.

    1. I do not have the appearance of a pixie therefore do not feed me like I’m one (In ref to the pixie sized gluten free bread/cakes/muffins on the market)

    2. The smell of fresh baked bread evokes the evil in me

    3. Trying to poo a mango when cross contamination has bitten me on the ass despite my best efforts and made me constipated.

    4. As above but bloating, usually when my rare night out/dressing up is looming

    5. Eating out! Argh I’m not an alien. I have told you I cannot eat gluten, wheat, barley and rye. That is all.

    6. The return of gluten item in restaurant by a chuffed ignorant waiter with the cake/sponge scraped off.

    7. Offerings of Jelly & Icecream. I’m not a child

    8. Family members in a high Coeliac incidence family still not getting it. Grrr

    9. Shark week & Coeliac diesese. Nuff said

    10. Learning to cook against my will. I hate cooking and it never tastes as good as the GF chef protests!

    Tis all x x

    Reply
    1. 19.1

      Gluten Dude

      Thanks for the laugh Lisa. I know it’s not funny…but still…

      Reply
    2. 19.2

      Donna

      “Pooping a mango…” ROFLMAO! Amen Lisa!!!!! Very, very, very well put!!!!!!!!!

      Reply
  20. 20

    Dave Barber

    You will go through the 7 stages of grief (is it 7?) over and over again until it seems like you can’t take it anymore. After a while though, when you stop holding on, your emotional attachment to all of the so-called “food” you used to crave will start to subside. You’ll slowly start to realize, very slowly, that you feel much better and are much happier when you’re eating food that actually works for your body. I don’t buy any of the gluten free replacement food anymore like pasta and cookies and all that crap that holds no nutritional value anyway. I started feeling worlds better and life got a lot better when I started eating a whole foods diet. It’s just a process, it just takes time. I know what you’re saying though, MUCH easier said than done. Stick with it, be different than most everyone else, and be OK with it. You won’t worry about it as much when you start to look and feel better than you can ever remember. And don’t take no lip from nobody, you hear??

    Reply
  21. 21

    Tiera

    Hugs to you. When my 6 year old was diagnosed….while I was relieved it was something I could control simply through his diet….there were several instances when I cried at the grocery store. It has only been about 6 months for us and we’re still figuring it all out. Just wanted to offer my hugs and support. I know how annoying people can be and how completely clueless they can be and how some adults just need to keep their mouths shut around my 6 year old who already feels like an outcast!

    Reply
  22. 22

    stacy shapiros

    so according to a fellow celiac and blogger our community is a bunch of cry baby snobs that play the victim card to get attention and we can’t take a joke….http://writersworld82.blogspot.com/2013/12/learn-to-take-joke-and-stop-acting-like.html
    every once in awhile I check to see if Jimmy Fallon made things right with his tasteless joke…she also had this to say “Perhaps cynical Celiacs hate on celebs and others because celebs and others have lost weight, and Celiacs have GAINED weight. For some Celiacs, it could be an intense jealousy issue. No one wants to be fat and unhealthy. However, just like every culture, there are ways to avoid the processed crap, and eat healthy.” I don’t get what she doesn’t get is she from some alter universe where Celiac is completely understood:) lol I was surprised to see such bashing from a fellow Celiac…oh well that’s my rant

    Reply
    1. 22.1

      IrishHeart

      Stacy

      I just read that blog piece you linked to and I have to go drink my coffee and breathe deeply and think before I say anything…..but I am sure GD is going to love reading it…..:)

      Reply
      1. 22.1.1

        stacy shapiro

        IrishHeart, I’m beyond speechless!!! I’m just putting this out there as I didn’t comment on any of her rants and WOW there were so many to choose from…uhmmm isn’t her behavior beyond any snobbery we could even begin to conjure up as an entire community? Just sayin cause I’m not sure what else to say here

        Reply
        1. 22.1.1.1

          IrishHeart

          I’m still mulling it all over. I read a few things and thought…she can’t be serious. She says several contradictory things on that site, for starters, and I am not really sure if she is worth me getting riled up. lol

          Truth be told, I made a New Year’s resolution to be less concerned with all the erroneous BS people say on the internet (because there’s tons of that going on) and to choose my battles more wisely, keep my trap shut, etc………..but it is difficult at this moment ;) I admit it. lol

          Reply
          1. 22.1.1.1.1

            stacy shapiro

            I know I was thinking the same thing “not worth it” and yes quite a few contradictions and zero comments from anyone at all on her blog. I thought twice about sharing it with everyone here as I didn’t want to create problems for her but anyone living a healthy life wouldn’t understand the shock lol I was up late last night and like I said every once in awhile I will google to see if Mr. Fallon issued an apology and her blog came up. I hear you loud and clear on the “not getting worked up and choosing my battles” oy vey:)

            Reply
        2. 22.1.1.2

          Gluten Dude

          There is nothing to say…

          Reply
          1. 22.1.1.2.1

            stacy shapiro

            nope…we took the high road watching football:)

            Reply
  23. 23

    stacy shapiro

    So, how bout the divisional playoff games? When life throws you a curve ball watch football!!! lol

    Reply
    1. 23.1

      IrishHeart

      watching right now…grab a drink, Cheers! :)

      Reply
      1. 23.1.1

        stacy shapiro

        Ditto:)

        Reply
  24. 24

    Brett GF

    Good a place as any for my first post. I was DX’d about 7 years ago. For me it was a relief. After doctors telling me I had IBS, for 15 years, I finally knew what was wrong. I am gluten-intolerant. Still not sure how it differs from Celiac…
    Guessing I have a “mild case”, pretty much had all the stomach issues. But, different strokes for different folks. And like most have said, time will help.
    Now if I could get my sister tested, that would be something.

    Reply
  25. 25

    Kristy K. James

    I’m so glad it’s not just me. I’ve never been diagnosed. After being treated for hypothyroidism for about a year – and not feeling better – I did some research and talked to my doctor about what I’d found. There seems to be a connection between the two issues and I wondered if I could be having problems with gluten. Her response? Go ahead and stop eating it and see how you feel. Thanks so much, doc.

    So I played with the gluten free lifestyle for a year or so. I went gluten-free for a few months on two different occasions, then caved in because I wanted a hot dog bun the first time, and real pizza the second time. And both times it was months before I got back ‘on the wagon’ again.

    What finally made me realize I had to give it up for good were my two worst symptoms. Surprisingly, I don’t have horrible stomach issues. I do get extremely fatigued, but the scariest things are that I get edema so bad the skin on my feet, ankles, and calves actually hurt.

    And the scariest of all? It feels like something is squeezing my lungs for about three days and I have trouble breathing for every minute of them. Everything starts to ease up after that, slowly. The breathing is back to normal after about a week, and the swelling goes away after about a month…as long as I avoid gluten during that time.

    So it was the breathing issues that finally made me decide to give up gluten for good. When you’re walking on the beach with your daughter and you’re at the point of telling her to call an ambulance because you’re 99% sure you’re going to die…well, enough is enough.

    I’ve been gluten-free for a little over eight months now, except for a little CC, and the fact that I’m still learning. Who expects there to be wheat in their selenium supplements? Or in freaking salsa?

    I’m finally past the worst of the anger, though every time I pass my favorite pizza parlor – the one that finally opened in my town after about ten years of driving 45 minutes to get one a couple of times a month.

    Having to look at pretty much every label on every product I buy is annoying. Shopping has never been something I enjoy, but now I spend ten times longer getting groceries than before. Someday, when I stop trying to replace former favorites with sorry excuses for substitutes, it might not take so long.

    The hardest thing though is dealing with family. I find things like Christmas parties to be so stressful I’d rather not go. At one open house last summer, I overheard a close relative actually mocking me. “What does she think? That gluten is going to kill her?” I left shortly thereafter.

    We’ve since discussed it and she goes out of her way to make sure my food is safe, but it still stings because so many think I’m just paranoid. I just want to ask them if they think I enjoy eating food that sucks – and paying outrageous prices for the privilege.

    Home is a lot of fun, too. I keep a lot of food service gloves around because my son is autistic and doesn’t understand that when he eats a sandwich, then opens a cupboard or the refrigerator, he’s contaminating those surfaces with gluten. Or if he pulls a frozen burrito out of the package, and then reaches in a bag of shredded cheddar before washing his hands, I can’t have anymore of the cheese. Or if he touches the gravy spoon to his biscuit, then puts it back in the pan, I can’t have anymore for my potatoes.

    I’m getting better at preventing some accidents. I put ‘my’ stuff in zip top bags in the refrigerator and cupboard. I use a permanent marker to write “MINE” on things like mayo and jams. And I try to remember to separate things like ‘my’ gravy from theirs if I think I might want seconds or leftovers.

    But I still hate that I have to do it. I guess I’m still mourning the fact that I’ve had to change my diet so dramatically, and I resent that so many people in my life don’t get it. That I’m not doing it because it’s a cool new fad. I’m not doing it because it’s fun. I’m doing it because I don’t have a choice. I just really don’t like feeling like I’m suffocating when I try to walk or do anything around the house.

    Wow. How was that for a rant?

    Reply
  26. 26

    Eliana from Argentina

    Hi everyone, I’m really happy I’ve come across this blog. I’ve been reading here and there and everything has been really helpful. I was diagnosed 3 days ago and though the first day I thought “ok, it’s just a matter of changing habits” yesterday and today I feel really sad. I feel I’m weird, I feel I’ll find it difficult, I feel I won’t be able to go to a restaurant anymore because I’m afraid the food I ask for is contaminated, I feel sad, I feel like crying all the time. Tomorrow is my birthday and I was about to call the celebration off! What was I going to eat? Not the same I had prepared for the rest of my family and friends at least… what about the cake? It’s really expensive here in Argentina to buy gluten free stuff. So… after crying and thinking a lot, I decided to celebrate, to eat a small gluten free pizza and a homemade hamburger, buy a small gluten free lemon pie to blow my candle there and make a regular cake for the rest.

    Everything you all write about is very useful and is helping me a lot. I still have a lot to learn.

    Lots of love for you all!

    Reply
  27. 27

    Nikki South Coast UK

    Hi everyone. After spending a few weeks reading lots of Celiac Dude’s blogs on here followed by comments from those in the community I’m starting to feel like I may finally have found my home. I am exhausted and have spent far too much of my life crying over the fact that sometimes I barely even feel human – it’s like I’m just existing in the most minimal way. I experience all of the following symptoms: Debilitating fatigue, brain fog, difficulty concentrating, back ache (lower back – every day of my life since I can remember), neck and shoulder stiffness/ pain, permanently dry uncomfortable blood shots eyes that gunk up through the day and over night, cracked lips, body stiffness (I went to Shiatsu massage and was told by the practitioner that I was stiffer than a 70 year old client she was also treating), IBS – caused me huge embarrassment and discomfort all my life with on and off diorhrea, bad skin (never had a day without spots since I was 11 – I’m now 32), sensitive skin (need to use very specific moisturisers and beauty products – especially round the eyes), depression, itchiness, weak ridged nails that split easily, stiff joints – pointer finger knuckle on right hand looks and feels a bit larger than it should be and aches sometimes as if I have arthritis in it, easily bruised, heart palpitations, wheat intolerant (went wheat free for 6 weeks to identify), low blood pressure (this may not be related to gluten), occasional sores inside nose when run down, clicking ankle (as long as I can remember), noise sensitivity (I have misophonia and ASMR), swollen glands from time to time….quite the list.

    I’ve mostly just accepted that I must be some kind of freak as most people can’t identify with my ‘ailments’ and like to write me off as a hypochondriac or as an exaggerating drama queen who obviously just likes a good moan.

    Every now and then I’ve somehow reached my limit on how much I can take and have raised the confidence to go and speak to a doctor – only to find that I should never have bothered. I have been dismissed with a condescending little pat on the head so many times. It’s only now that my depression has reached a stage where I need medication and my fatigue is hindering my career that I have started to try and wage a (low energy!) war and find out what the problem is. In the last few months I have asked to be tested for diabetes… hormones (PCOS – I have hirsutism too) thyroids…..etc so many I can’t remember. All I got told was that everything is normal and there was nothing wrong with me. Grrrrrrrrrr!!! I was told that my testosterone levels were a little low but that it meant nothing – I’ve had the same come back for Iron Levels. I looked it up online and found that there was a chance that low testosterone in a female could very well cause fatigue and brain fog and so asked to speak to another doctor (an endocrinology specialist apparently) for a second opinion. (I remember feeling pleased and almost excited as I hoped I was homing in on a reason on why I’d felt so lousy for so long…when the doctor spotted this she charmingly joked with me that ‘I needed to get out more’ if that was the kind of thing I got excited about. I’m therefore guessing she hasn’t the FAINTEST idea what back ache every day of your life feels like or how it feels to almost pass out at your desk at work from a mind-numbing-bone-weary-fatigue. The endocrinologist specialist female doctor I went on to see next virtually laughed in my face when I told her I was concerned that maybe the low testosterone was causing my fatigue, She made a flippant throwaway comment of ‘You’re not celiac are you?!’ followed by ‘it could well be depression’ ……for 13 YEARS?! Wow that’s one hell of a depression isn’t it!!!!

    So here I am….her thoughtless throwaway remark may very well have led me on to discovering that I am either Coeliac (British spelling!) or gluten intolerant. I’ve just had the celiac blood test which came back negative. I’m ignoring that as after seeing the comments on here I realise that the blood test is really not that reliable. I’m going to see yet another doctor on Wednesday to request a biopsy – while I’m still ‘glutened up’ I’d like to try confirm it or rule it out. If that comes back negative too then I’m going straight onto a gluten free diet regardless to see if any of my symptoms ease off/ disappear.

    I just wanted to say endless thank yous to Gluten Dude for creating this site and to all the people on here that have shared their feelings, stories and symptoms. You are all amazing. More than that you have all helped me really start to make sense of all the things that I’ve been suffering with over the years and had just accepted as ‘just me’. I could cry with relief – I have cried with relief. I don’t even know yet if going gluten free will be my solution but what I do know is that I feel 1000 times better simply knowing I am not the only one that has felt isolated and heartbroken by strange unexplained symptoms. I feel part of this community anyway :)

    I wish for everyone to find peace, calmness and happiness, we’ve suffered enough already xxxx

    Reply
  28. 28

    gillian

    I was relieved and pissed, and nothing is going to replace bagels. You know is worst, living with someone that is not allergic to gluten and still can eat all those yummy, yummy, (stop thinking about it) things.The thing is though is living without reactions your body has to gluten is awesome. I not only got the “poops” but also got a feeling burned on my skin feeling. Anytime I try to have denial about having gluten problems and try to eat gluten they come back and punch me in the face.What I hate to most is checking EVERYTHING.

    Reply

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