My Wish for 2014: Less Celiac Rants Like This One

celiac tolerance

While I love being a sounding board for people’s celiac rants, it saddens me that I still receive so many of these.

Today’s rant comes from a fellow celiac whose ill father simply doesn’t give any credence to our disease.

Now where have we heard this before?

Read on…

Sorry to be a pain, but I feel the need to rant. 5 years ago, I was diagnosed with coeliac disease. I had to sort out my cupboards, gave away (or threw away) everything I couldn’t eat. Joined coeliac UK, my brother and husband got me all sorts of books, did some research on the internet (and found you). Adjusted my thinking some, and I’m ok.

Dad has never understood. He doesn’t get why I need to ask questions in restaurants. He doesn’t know why my sister in law groaned when he dragged the vegetable spoon over his breaded fish, then stuck it back in the vegetables before I had had chance to have any. After all, I am a stupid idiot making a fuss.

He has been diagnosed with heart disease and prostate cancer this month. The cancer hasn’t spread, so the doctors are happy it’s all treatable, and it will take about 10 weeks. The only problem is that some of the tablets are a but heavy on the liver, so he has to give up alcohol for the duration.

Don’t get me wrong, I’m sorry he’s ill. But he’s saying he wishes he had refused treatment, because it’s so hard to not have alcohol. And I can’t possibly understand what it’s like; after all, I have never had to change what I eat and drink for medical reasons.

He’s tried, and likes, the alcohol free beers (and they are much cheaper than gluten free ones) but expects sympathy from us, not because of his illness, but because he can’t drink for 10 weeks. I have been forced to give up gluten forever, and manufacturers have a nasty habit of sneaking it in where it doesn’t belong, making gluten free hard to stick to away from home. But I get no sympathy, because I have a stupid pretend disease.

Rant over…hope you have a great 2014.

Dude Note: A happy and a healthy 2014 to the best damn community. I appreciate you all more than you’ll ever know.

May 2014 bring us more awareness, more education, more tolerance, and a lot less Jimmy Fallon. 😉

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18 thoughts on “My Wish for 2014: Less Celiac Rants Like This One”

  1. I can sympathize, because my family and coworkers are like this. I don’t have celiac disease, but I’ve had to adopt a gluten-free lifestyle due to what I believe is Non Celiac Gluten Intolerance. I suffer from severe stomach issues (uncontrollable gas, diarrhea (literally in the bathroom 12 times a day), bloating, bad eczema, itchy rashes, ulcers, migraines and liver disease when I eat wheat, grains, sugar, etc.)

    I feel really, really lonely having to live this way. I’m literally crying as I write this, but I can so relate to the person who wrote in. People think I’m making up my illness for attention, especially since I don’t have an “official diagnosis” because my intestinal test and blood work came back negative. I had been gluten free for nine months prior to the test — I know, big mistake. I’m ashamed, many times because I don’t have the official diagnosis.

    It’s tiresome constantly having to explain to people why I can’t eat certain things like processed foods, candies, etc; over and over and over again. No one gets it, or claim that I’m exaggerating when they ask me to explain why I’m on the diet.

    Last year, I skipped Thanksgiving to adhere to my gluten free diet. This year, because relatives asked why I skipped, I ended up attending to avoid having my absence draw attention.

    I tried not to make a fuss, but I ended up eating stuff I shouldn’t and got sick. I’m so tired of people getting offended or me having to explain time and time again why I cannot eat things like sugar or wheat.

    Coworkers, who know I’m on a gluten-free, sugar free diet have literally been trying to sabotage me by eating stuff I loved eating on my former diet, in front of me — like pizza. I bring my own stuff usually, to eat an am fine with that, but it seems as if they intentionally do it to “rub it in”.

    I know people have to eat, and I don’t mind, but when it’s pizza parties, and then I’m excluded, it really hurts. Not to mention I’m a reporter/writer for a college campus’ PR office, and there are times I have to attend luncheons. There have been too many awkward moments to count when my boss tries to force me to sit at a table, and watch others eat, because I cannot. The peer pressure is immense.

    My parents are also less than sympathetic, thinking that if a doctor didn’t diagnose me with an issue, then it’s not official.

    I have to admit that I have slipped really badly on Christmas, and to be honest, I feel extreme guilt and know what road it will take me down, but I seriously feel like I’m up against it. My willpower is eroding.

    1. I have never been officially diagnosed, but after being so sick for a year to the point I was practically disabled, I do not care. I tell people I have celiac ( not trying to offend those truly diagnosed) , I could not get tested after being gluten free, but as sick as I was I am never eating it again.

      People are going to eat in front of you, I picked up a pizza for my husband and watched him chow it down. He enjoys it, it is not fair to ask him to change what he likes for me. My coworkers eat all kinds of goodies in front me, again, it is not fair to make them change their habits because I have a problem with certain foods. Life goes on.

      I pack my food and honestly have found most people to be very kind about my situation. If I go to a party, I pack a backup plan in my car. At the last party I went to the hostess even asked if I had any allergies as she told me what all the dishes were made from.

      I keep it light and not make a big fuss over it and survived the holidays just fine, and for the first time did not gain weight!

      You have to have a sense of humor and try to keep things light, that is how you get through it all!

        1. Frustrated Celiac

          Anonymous – wow, that is not good. I’m guess I’m fortunate to live in a part of the continent where ignorance isn’t common on this issue – most people I’ve come across know about Celiac, and I haven’t had even one disbelieving remark in the year or so since diagnosis. Watching others eat gluten will get easier with time for sure. The tough part is people who don’t believe. I came across that many times over the years with allergies – the only solution is to limit contact with those people as much as possible, that way, they can’t hurt you with their ignorance. It’s sad some people are that ignorant/selfish, but it’s important to remember their opinion isn’t worth anything!

  2. After reading these two posts, I am so thankful that I can say the majority of my family is very supportive and try their best to be helpful to me. There are always a few who don’t believe gluten intolerance or even celiac’s is real, but I just ignore them. It’s hard enough to feel like the oddball answering a lot of questions even when people try to understand, it would be incredibly painful to face a majority of people who didn’t believe me as these two and many others must do. My husband is the best and I appreciate him and his support more than I can say. Of course he saw and lived with my not so alluring symptoms for the years before I found out about my gluten intolerance and finally the full blown Celiac’s. I am mostly thankful that there is more awareness of the disease in general and there are more dedicated factories making truly safe alternatives to make it easier to stay on my diet. To those who don’t believe gluten intolerance is real and try to force or “trick” gluten on you to prove they are right, may they receive uncontrollable diarrhea for a week in the new year!

  3. I feel really sad for whoever this person is. It sucks that some people just can’t take this seriously. They can’t wrap their heads around it, I guess. I was diagnosed recently, and thankfully my family is pretty supportive (although they still seem to think that “just a little” gluten can’t be THAT bad). The bigger problems are at work. I work at Panera Bread (oh, the irony) and I didn’t bother telling my boss. I just started bringing my own lunch, no big deal. But things got uncomfortable over the holidays when everyone brought in treats and I couldn’t eat any. Only a couple people I work with know about my celiac, but the rest just wouldn’t stop asking why I wasn’t eating cookies and roast beef sandwiches. Then last night, we had a meeting (we have several a year) where we’re supposed to sample the new products. Well, there was nothing I could eat except for a smoothie. I thought I declined the rest politely, but my manager acted annoyed, saying that preparing all the food samples was hard work and I should at least try it because customers will ask about the products. Yet she didn’t question the lady who is allergic to onion (which was in most of the samples). And on top of that, the manager decided to turn the meeting into a pizza party. Of course, I was being ungrateful by sitting there watching everyone else eat pizza, right? I don’t think I should have to quit my job because of my disease. There are plenty of customers who need to eat gluten-free, and if anything I think I’m just more knowledgeable about our gluten-free products than the rest of the staff. But I’m afraid if my manager finds out, she will try to get me to quit. It’s really upsetting to me.

      1. Hi Gluten Dude 🙂
        I don’t know if I should tell them. I’m really worried that they won’t want me working there anymore if I can’t eat most of the food. And I feel like my manager already thinks I’m a whiner because I finally told her about 6 months ago that I’m diagnosed bipolar. I only told her because for a while my schedule was really odd hours of the day/night and it was interfering with my sleep, which REALLY screwed me up and it was affecting my work. I’m worried she’ll think I’m just trying to get attention or I’m a hypochondriac or something. Maybe that’s irrational of me? Maybe I shouldn’t care so much what she thinks? I don’t know… If you have any advice, I’m definitely open to it.

        1. Rachel,
          Celiac disease is a legitimate diagnosis and I do not see why you shouldn’t say you have it, hon.

          The truth is, you may find that your “bipolar symptoms” RESOLVE the longer you are strictly off gluten. The symptoms of untreated celiac include mood disorders of all kinds.

          I’ve heard many times from others who were mistakenly diagnosed with bipolar that their symptoms were actually symptoms often caused by vitamin deficiencies and malabsorption of nutrients and the effects of the disruption of neurotransmitters.

          I hope you have good follow- up care from a celiac-savvy doctor who knows all the neurological symptoms of CD.
          When you start to heal your gut, you will correct those deficiencies and if and you are on meds for bipolar, then it will likely be over-medicating for no good reason and you don’ want that happening.

          Bipolar is listed as one of the neurological symptoms associated with CD.
          Check the Univ. Of Chicago Celiac Research Center website for
          300 symptoms of CD…here is a cut and paste of that list:

          Bipolar disorder
          Difficulty Making Friendships
          Easy Frustration and Anger
          Panic Attacks
          Sense of Worthlessness

          Trust me, sleep disorders are also common but resolve as your body heals off gluten. I had insomnia my entire life, but sleep through the night now.

          And no, you should not have to quit your job because of celiac.
          And you certainly should not lose your job because of it either.

          Good luck. Healing happens and you may find your emotional well-being and sleep issues resolve in time! hang in there!
          Best wishes.

          1. Oh, sorry for any typos! My silly cat decided she wanted to walk across my laptop while I was typing and I hit send before proofreading.
            My bad.


        2. Hi Rachel

          I’m probably in the minority here but thought i would offer to you my experience. There are many people i do not tell that i have celiac and i am very happy with that choice. i think you have to do what is right for you. If you feel confident a person won’t be supportive then why tell them and deal with that ? You could always tell your boss that your doctor has suggested you stay away from X or that you are on a diet and feeling much better so you want to stick to it, etc. Celiac is a health issue and its up to you to decide who if anyone you want to share that with. My personal opinion is that no one would think I was odd for not telling everyone i had cancer or couldn’t have children since those are personal issues, why do i have to tell everyone i have celiac and deal with all THEIR drama and questions. My thought was i wanted to be really careful about who i told because i was still getting a handle on how i felt that i didnt need anyone else’s opinions and thoughts. Well its been almost 2 years now and i am SO thankful that i didnt tell certain people. Do what feels right for you and take your time before you tell people. That my unsolicited advice. I do understand where you are coming from. i went through a very similar experience.

  4. Frustrated Celiac

    I’m lucky that’s not my family, because I’m quite certain I’d be estranged from them. Maybe it’s from life experience, but I really can’t deal with those who trivialize or don’t believe the health issues of others. For someone to sit and not believe the pain someone is going though, well, words can’t even describe how I feel about that. To me, it’s extreme ignorance and arrogance. Hopefully the author knows he/she is right, it’s his father who’s being unreasonable and hateful, and he doesn’t spend too much time worrying about getting along with his father unless the change comes from the other side. Even with close family, there’s people you just don’t need in your life if they’re going to make your life miserable.

  5. I’ll just throw out my 3 cents ( have to account for inflation!) to anyone whose family, friends or co-workers give you any crap
    about your diagnosis or the treatment of this disease:

    Ignore the critics and the scoffers! This applies to all NCGS people and others whose health may benefit from the GF diet.
    Just say firmly: This is a medical necessity that I remain gluten free.
    Got it? Good 😉

    People who do not understand may be be ridiculing, taunting, or rolling their eyeballs at you. This comes from a place of ignorance, usually–not just because they are mean. Sometimes it comes from jealousy—jealous that they are unable to implement changed in their diets or lifestyles to be healthy themselves– and they are miserable about it. And sometimes it comes from being irritable because they may have “gluten head” too. Yes, I have seen in people I know and I just want to say “omg, just step away from the gluten; you’re behaving like a total shyte”.

    This is YOUR life.
    You are in charge of your health.
    Make a New Year’s Resolution to be more assertive– yet calm– when addressing nay-sayers or skeptics.

    And a Happy, Healthy New Year to all the gang here on G D’s site.

  6. GD-

    Happy 2014. This year is going to rock. Fight on love. To the ranter- I get it, we all have been through this. it sucks. You have to take care of you. That’s it. You can’t expect people (even your family) to understand how bad it can get. Wish I had better advice for you but this is reality. You can do it.

    Cheers y’all-
    Jersey Girl
    “You can’t expect me to be fine. I don’t expect you to care. I know I’ve said it before, but all of our bridges burned down.”
    Adam Levine

  7. I must say that reading the rants previously posted have made me feel stronger. I obviously came here to rant but I cannot now. I have known my dx of Celiac Sprue for 28 days. I stumbled upon Gluten Dude by accident while viewing a mind blowing interview of Dr. {idiot} Drew with Jennifer Esposito. I am vindicated by my diagnosis. I have been a sickly person all of my life and was picked on and been the talk of co-workers around the water cooler saying I was lying when I called in sick for the 12th time in five months. Calling family and friends to cancel plans for holidays and dinner plans because I felt like shyte and knew I would have to run to the toilet in a hurry during dinner because of explosive diarrhea and stunk up the guest bathroom. I am throwing my diagnosis in everyones faces now. I am sharing every new revelating symptom associated with my disease. Doing so because I can finally show them all I am legitimately and terribly ill. And here is the golden nugget: I am spreading awareness and educating everyone so that they can no longer mock me and gossip about me in a derogatory way ever again. Yes I am sure they are getting tired of it. But guess what? I will never stop educating and researching and sharing. It may help someone else even just one person to question their own symptoms and get tested. I will not complain. I will embrace. I will fight for my freedom to be sick. I am an american damn it. And this is just the beginning for me and all my celiac brothers and sisters everywhere. Times are changing because we will be heard. Keep fighting and dont hold back. I love all of you who know me and if you love me too then help me and support me and accept me.

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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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