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36 Comments

  1. 1

    Juniper

    My friend with Indian in-laws says that they are super careful for her health and always want to make sure what she’s eating is safe. I wish you had my friend’s in-laws as your family.

    Reply
  2. 2

    The Atomic Mom

    I find myself disagreeing with you Dude, for the first time ever …. I think it *is* incumbent on those with food allergies, and/or diseases like celiac to educate our families and friends. How will they know unless we do? I am told all the time, “I never knew about this until your family …. thank you for teaching me”. It is a hard and lonely road too, but you and this blog have created a community for support for people. To Anaya … stay strong, dig your heals in, yell and scream if you must, but do not give into anyone. Your health is the most important thing, no pizza, or cake is worth that. Maybe offer to have a “family health night” and teach your family.

    Reply
    1. 2.1

      Gluten Dude

      I totally get that and I hear what you’re saying. I just think that if I had a friend with celiac and I did not have the disease, instead of saying “oh go ahead and eat it”, I’d try to learn more about the disease my friend has and do what I can to help her. That’s why I said “a little education can go a long way”.

      I think we’re saying the same thing, you’re just saying it much more eloquently than I am ;)

      Reply
    2. 2.2

      Musicmidget

      I have to throw this in there – sometimes people just don’t want to hear it. No matter how nicely you try to put it. No matter how you go about it when trying to educate them. Unless it affects them personally, they simply don’t care. It really sucks when the people that act that way are your own family. But it happens.

      I totally agree that it’s our responsibility to educate. However, we can only do that with those who are receptive to the message.

      Reply
      1. 2.2.1

        John

        “we can only do that [educate] with those who are receptive to the message.” – Musicmidget

        We also have a bigger problem, Musicmidget, well-documented on this blog, in that our media is enabling a society that increasingly DOESN’T want to hear our message, that doesn’t want to be educated. And now the Aanyas of the world are paying the price for this dangerous behaviour.

        Anyone see this on Jimmy Kimmel last night?

        http://www.youtube.com/watch?v=AdJFE1sp4Fw

        I already wrote about this video this morning in an older GD blog post so I won’t bother repeating my rant here, I’ll just link it:

        https://glutendude.com/celebrities/jimmy-kimmel-gluten-exists/#comment-35399

        Reply
        1. 2.2.1.1

          Musicmidget

          Ugh, I just watched the video and I wish I hadn’t. I don’t even have the energy to go there today. :)

          I agree with you John. The media is a big part of the problem, if not the biggest, when it comes to getting our message heard. Late night talk show hosts are not our allies in this fight. Since I feel like I’m being incredibly negative today I will offer this as the flip side to the Kimmel video. If you haven’t watched Jennifer Esposito’s interview with Katie Couric last week, see if you can find it. They started off talking about her acting career but when the topic got around to celiac it was treated with the seriousness and respect it deserves. It was nice to see that for a change and made me realize that maybe the daytime talk show circuit is where we will make our strides. I certainly hope so. Jennifer is the only celebrity now who is actively lending her voice. She’s doing a great job but we still need some more folks to jump on board.

          And to Aanya – I know it is difficult to say no. I probably wouldn’t have either when I was 22. But one of the beautiful things about getting older is that you start to care less and less about what other people think. As hard as it is to stand up for yourself sometimes, please try to take that attitude now and protect yourself and your health. This is the only life and the only body you will get. It is not worth sacrificing that in order just to please others. I’ll leave you with wisdom in the form of song lyrics:

          “But it’s all right now, I learned my lesson well.
          You see, ya can’t please everyone, so ya got to please yourself”
          Garden Party by Ricky Nelson

          Reply
          1. 2.2.1.1.1

            John

            MM: Thx, I found two separate video clips on Katie Couric’s site, one on her acting and the other on her celiac. I’ll link the second one for anyone else who wants to see it; it’s definitely worth a look:

            http://katiecouric.com/videos/jennifer-esposito-celiac-disease/

            I saw a different video last week where she was interviewed about her celiac on some other show; she must be on some sort of promotional tour for her book now and it’s great to see some media outlets are giving her a voice.

            I don’t suppose we’ll ever see her on the late night shows but at least she’s getting a chance to counter some of the garbage that’s out there so big thumbs ups to that. I hope Aanya’s family gets to see some of this and maybe start to understand the hell she’s living in.

            Reply
            1. Steve

              John, thanks so much for posting the link to Jennifer’s interview! I’ve heard a lot about her on this blog. It’s great to see what she is doing to advocate for celiac disease. Now I need to get to her shop!

              Reply
  3. 3

    Armywife32

    I understand that non-chalance, because my GI is Indian (is that an Indian thing?).
    But he told me how Celiac was uncommon in India since the staples are rice & meats, so he told me, “just stick to rice & meats and you’ll be fine.”
    Um, I’m actually not fine and haven’t fully gotten healthy again and I am 2.5 years into gluten free life, but that’s another story.
    You have to learn to stick up for yourself. Family really can be the worst. But nothing is worth sacrificing your health. Nothing.

    Reply
  4. 4

    CD

    First of all, Celiac disease is an autoimmune disease, which means, your body is attacking itself every single time you eat gluten of any kind, anywhere, everytime you do it. The first thing I would suggest is educate yourself about your disease. Read this blog, read books about Celiac and the ramifications of eating gluten. Once you know in your heart that you cannot afford to take any kind of risks, you’ll have the education you need so that you can teach your family and friends that this is very serious and not to be taken lightly.

    Once your family/friends understand how serious this is, they should become much more supportive and understanding. Knowledge is power. Especially when it comes to this disease.

    My grandmother and I are the only two people in our entire family who have been diagnosed with Celiac disease. Since this is a hereditary disease, there are very likely others who have this and just don’t know it yet. My grandmother was diagnosed late in her life (84 to be exact) and she has many terrible health issues as a result. Neuropathy, diabetes, pulmonary fibrosis, migraines, arthritis, and was just two weeks ago diagnosed with pancreatic cancer. They say she has a month or so at the most. It’s hard to watch the only other person in my family with Celiac die in such a horrible way.

    The point of this is that Celiac is a serious disease that if treated properly can bring health and long life. If left untreated, neglected and ignored can have terrible ramifications. Please educate yourself immediately. It’s your health and your life after all.

    Wishing you well!
    CD

    Reply
  5. 5

    Sour Melissa

    I haven’t commented here before, but I’ve read for a long time. Having not had an official diagnosis, I’m not sure if I have celiac disease or NCGS, but I now know that celiac runs in my family, and I can see and feel the difference. However, I realize, more and more, how lucky I’ve been to have a support system like I do. Here goes…

    My dad’s family is Sicilian. Bread, pasta, and sesame seed cookies ruled many family get-togethers. The first time they saw me after I went gluten-free was a bit more than two months after the fact, on Mother’s Day last year, and the change was obvious. My thyroid was working again, so I’d lost 28 lbs. (over 50 now, with muscle gained), my skin didn’t have that sickly pallor it used to, and my hair was noticeably thicker. My “fibromyalgia” (yes, that was my initial diagnosis from two different doctors) was gone. They’ve been on board ever since, especially my great aunt, the dietitian. Many of them still ask questions, but it’s never judgemental and always so they can protect my health.

    I got lucky that one of my best friends, a cook at that, decided it was worth brushing his teeth every time he eats a burrito and changing his own recipes once in a while to pursue a relationship with me. Three months into it, things are great, and while he’s still learning, he tries, and always listens when I say I can’t have something. He’s seen me get cross-contaminated, and just wants me to be healthy.

    I hope Aanya’s family and friends eventually understand that she will continue to get sick, and make herself progressively sicker, if she keeps eating gluten. Be strong, girl. The rest

    Reply
  6. 6

    Lee

    Aanya, my heart is breaking for you. I don’t know how I would have handled the pressure of Celiac at such a young age. Please don’t continue to eat gluten to make others happy. You know what it does to you, and the anxiety attacks are a result of the gluten. I know I suffered from them for years. I do understand the pressure from family and friends to go ahead and eat what is offered. I rarely eat out with my siblings and their spouses just for that reason. How many times have I heard, “Go ahead, one little bite won’t hurt, it’s so good”. Well, I don’t care how good it is, one little bite will hurt, in more ways than I care to count. When you’re with your family and friends you have to remember that your health is more important than making anyone else happy. Some people will just never “get it”, sad to say, but you can continue to try and educate them. I’ve found that if I’m at a family gathering and they try to tempt me, I just walk away and go to another room. Remember, it’s just food.

    Reply
  7. 7

    Thankful for Whole Foods

    While I agree with you Atomic Mom, that we do need to be educating other, there is a right time. We have to be aware and realistic about our energy level. Dealing with celiac takes a large amount of emotional energy, especially at first. It also takes a lot of time and energy to change your way of eating, shopping and cooking. I am about 7 months in and during those first few months I was physically depleted from the long time of nutritient malabsorption and emotional spent in general. I could barely get thru my work day to come home and take a nap. I only talked about it with the need to know people. I’ve been working through it all with my fabulous psychiatrist. When I told her I didn’t have the energy to relate to people as I used to she said, “of course you don’t your energy is going in other directions right now.” I’m now in a much better place and I plan to share celiac with my Facebook friends pretty soon. Last month I wasn’t ready to do that because I knew it wasn’t the right time. GD – so sorry! Gluten, stay away from our dude!

    Reply
  8. 8

    Terry J. Wood

    I hear you. I’ve been there.

    Some coping strategies would go a long way to helping her at this point. Some simple rules will help. Things such as:

    Always bring your own food to family gatherings.

    Don’t eat anything you haven’t prepared no matter what.

    Eat before going to an event where there may be food.

    Drink only things that you know to be safe: bottled drinks, tap water, etc. while you are there. (Don’t take heated water from unsafe things, such as pots that may have been used to cook gluten containing foods!)

    By all means tell your friends and family that you have a serious genetic disease — that is, a disease they can’t “catch” — but one that will be with you for the rest of your life.

    Let them know that the only therapy you have at the moment is to strictly control your diet. Tell them that if you do not control your diet you’ll be at risk for cancer and other illnesses. You simply CAN’T eat gluten containing food. Tell them that it will KILL you, slowly but surely, it will KILL you to eat it.

    Be strong. You NEED this diet to regain your health and YES you are STILL on this diet; you’ll be on this diet for the rest of your life.

    As they said in the Sci-fi comedy “Galaxy Quest”: Never give up! Never surrender!

    Reply
  9. 9

    Barb

    I have this when they push and push I am a bitch . I stand up for me I tell them to eat broken glass and then let me know how it feels ! People are stupid friends and family alike .

    Reply
  10. 10

    thetxlady

    Traditional Indian food is one of the #1 “types” I recommend to the newly diagnosed!! While the obvious na’an is a no no. Dosas, samosas & the like are traditionally made with rice flour anyway. Discovered this wonderful fact my first duvali.
    Now an “americanized indian family” that routinely eats pizza, cake, drive thru food is a TOTALLY different animal. While fat traditionally equals wealth & abundance…their abundance will flap over into the next seat on an airplane. This isn’t healthy for americans & absolutely isn’t good for a celiac.
    I do understand the “stick your head in the sand & this will pass attitude” it was one of the things hated most about my ex-husband. You come from a proud heritage of passive resistance where literally starving yourself for your beliefs is older than the US itself. Time to find some of that inner courage NOT TO STARVE. The way flour works with our bodies 1 small teaspoon of flour can counteract weeks of salads & clean eating not allowing your body to properly process those nutrients.
    Yes the question “how can a fat girl be starving” is one I’ve been asked all too often…our bodies hold on to flour products as fat because our bodies have no idea of how to process that chemical. As we begin clean eating our bodies do “freak out” with fluctuating weight & water levels as the toxins SLOWLY start being released. This can result in a period of feeling worse with better food, bring up all the old insecurities & anxieties especially when family chooses to fuel them.
    If you need space to get secure in your choices to be healthy…DO IT! Real friends don’t pressure you to do harmful things! Time to re-evaluate who you spend time with & why you choose (yes that word again) to be around people doing you harm. A good nutritionist that understands indian traditions & foods would be good, a good celiac nutritionist that “gets it” & cooks indian even better. It may be easier to cook gluten safe rice & curry at home then tell mom your”feeling traditional” when asked why you brought food. You then have safe food you can eat to share.
    Lots of us bring our own food to events. “My way” is I always bring extra to share so its not so obvious I’m refusing gluten filled food everyone else is eating.
    PM me if you need a spicy GF mac & cheese recipe people fight over at pot lucks. First & foremost in this journey is to learnm to BREATHE. People will use it as an excuse to be meaner than normal, seed doubt in your mind & try to sabitage the innevitable weight stabilization that comes with being able to properly digest food again. YOU DO NOT NEED PEOPLE IN YOUR LIFE THAT DO HARM!!! Yoga & prayer have helped me to become clear on who those people are. Pray those there for your highest good will reveal themselves & those not there for that purpose leaves your life…then GET AWAY FROM THE DOOR a stampede of those you thought were such good friends quickly follows.

    Reply
  11. 11

    Mary

    Perhaps you should visit your doctor for a review appointment with a close family member. Let your doctor explain why it is so important to stay on the gluten free diet and the associated health risks if you don’t.
    Having a family member or friend at the appointment will hopefully enable you to have some support. This support will be invaluable when dealing with ill- informed people in regards to your medical condition. It will give you the strength to stay gluten free for your health’s sake.

    Reply
  12. 12

    Jersey Girl

    GD-

    Great post. Sorry you got hit. I did 2 and I cannot figure out what the hell got me. %^#! Anyways-Aanya, don’t feel it is your responsibility to educate your family. You might be wasting your time and energy. Some people just don’t get it and never will. You know yourself and what makes you sick. You need to find the courage to make yourself well. I know you can do it. This community knows you can do it. We are here for you..

    xo-
    Jersey Girl
    ———————————————————————
    “Don’t follow others blindly.”
    Indian Proverb

    Reply
    1. 12.1

      Steve

      I just attended my first celiac support group meeting last night with my wife. Pam Cureton from University of Maryland’s Center for Celiac Research in Baltimore was the guest speaker. Before this event my wife really wasn’t “getting” how serious celiac is and how difficult it is to manage. Listening to an “expert” reinforce what I’ve been telling her all along carried a lot of weight.

      Reply
  13. 13

    Videophyle

    It might be worthwhile to spend a little time trying to convince them that you really have CD. Make copies of your blood test and biopsy results and hand one to each of your family members. If you can get your doctor to write something saying you need to be on the gluten free diet, that would be good too. That should give them something to think about. Other than that, just wear them down with consistency. If they see that month after month, year after year, you won’t eat gluten, they’ll eventually get used to the idea. Unfortunately (and I do understand why you have given in), if they see you eat it sometimes they will push for you to eat it more often. And I hope that the person who told you to eat it and just be sick is not a close family member because the best thing to do would be to stay away from him/her.

    Reply
    1. 13.1

      Musicmidget

      I get what you’re saying, but why should you have to “convince” a bunch of people who are supposed to care about you and your well being that you are actually sick? Shouldn’t your word be enough? Not only do you have a disease, one that’s incredibly difficult to manage at that, now you’re a liar too? No one would question a peanut allergy, a cancer diagnosis or a diabetes diagnosis. Why question celiac? I do totally agree that giving in and eating gluten anyway sends a mixed message. I just can’t give a pass to people who are supposed to care about you not taking it seriously. The general population yes. Friends and family – absolutely not.

      Reply
      1. 13.1.1

        Videophyle

        I agree, you shouldn’t have to convince anybody. It would be nice to be able to stay away from these people, but they’re her family, so if she can do anything to get them to understand, it would help. Sometimes people will respect information if they see it on paper from someone they consider an authority.

        Reply
        1. 13.1.1.1

          Musicmidget

          Videophyle, you’re right. Seeing something in writing from an actual medical doctor might help. This life is hard, and it’s even harder without the support of your family. And at first, celiac does sound farfetched. It took me about a month of continuing to eat out after my diagnosis to realize that I just wasn’t going to get better unless I really committed to eating gluten free. I didn’t want to believe that it would be that difficult or restrictive. Without suffering the physical consequences, I might never have been convinced myself. If it takes that much to convince those of us who actually know we have it, then it’s only reasonable that it might take more to convince people who don’t.

          Sorry if I came off as abrasive. I get so frustrated hearing these stories and just wish that more people understood or at least could show some compassion.

          Reply
  14. 14

    Rachel

    You and your health are worth the fuss, absolutely. :)

    Reply
  15. 15

    Jennifer

    You know all those hard things that happen to you in life that cause people to say that this will allow you to find out who your true friends are? Well, this is one of those things. The hard part about that (as is always the case) is that you will be disappointed and hurt by some people who you thought were better friends than they actually turn out to be. But the great thing is that you will be overwhelmed and amazed by the kindness of some people that you did not expect to be in your corner. At least I hope, for your sake, that is the case. If not, then I hope you can find some new friends.
    While some people’s reactions and lack of understanding can be very hurtful, the truth is that your true friends will be supportive of you even if they don’t truly understand what you are dealing with.
    I don’t need my friends to understand every single symptom I had or why I may be able to eat something at one restaurant and not eat the same thing at another. I just need them to support me and understand that I am doing what I have to do and trying to do the best job of being gluten-free that I can.
    I truly hope that you can find that same support for yourself! Everyone deserves it!!

    Reply
  16. 16

    BlushinRose

    You do SO deserve to feel better. Please put yourself first and stop trying to please everyone else! Nothing you eat around those gluten-eaters is worth how much better you will feel. Physically and emotionally, you will feel better. You do have the strength to do this. Just educate yourself on your choices, learn how to cook some wonderful dishes, and practice being assertive. Just say “NO” (you don’t even have to add the “thank you”)! Join your friends at restaurants but unless you know for sure you can eat safely, have your own food before you go out and have a drink (or three) while they eat. (Don’t drive yourself home). You can do this!

    Reply
  17. 17

    Gemini

    Aanya…….what I am about to say will come easier as you heal. The self confidence will come once you become a Celiac expert, which you will.

    My dear…….STOP GIVING AWAY YOUR POWER! This happens all too often to women when they are pressured by idiots around them. We tend to cave to please people. No, no, and no!

    I went through the same thing with my family in the beginning…the family I grew up with, not the family which is my husband and I. He is great and fully supportive. Not so much with parents and siblings. They all have associated conditions and symptoms but none of them have been tested or tested correctly. Because I have Celiac and they don’t want to have it. That scares them. Someone who can stick to the diet and stand up to people who say stupid shit like this is a very threatening person indeed. Food is emotional and there are some who would rather die than eat healthy. That is all the gf diet is….healthy eating. Careful, healthy eating.

    Take a deep breath and practice what you will say to them but above all, do not cheat and the self confidence will come. Bring your own food, as I do, to all gatherings and if they pressure you relentlessly, leave. At some point, they will understand you mean business and stop this foolish behavior. You can do this and you are not alone. We understand. Go get ’em, girl! : )

    Reply
    1. 17.1

      Becky

      It’s so true that part of the problem with your family (it is with mine) could be they are afraid if you have celiac and have to change, they might have it and have to change, too! I’ll just say that it has gotten easier with my family, I just went to a family get-together (kid’s birthday) where the menu was pizza, salad, and birthday cake. I brought my own gluten-free pizza and cupcake for myself, and brought the salad for everyone. They are used to this now–in the past I would have gotten comments. So it does get easier once they see you are serious. You are worth it, and you deserve to be healthy and feel better. Best of luck.

      Reply
  18. 18

    IrishHeart

    Listen to gemini, she is very wise.

    I suggest you and your family should read a few books. (Yes, I am giving you homework!) :)

    Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler
    and
    Gluten Freedom by Dr. Alessio Fasano.

    THEY need to get on board and understand that with every little bite, every “taste” they insist you take, they are killing you.

    It’s just that simple.

    Don’t let ANYONE make you consume the one thing you must avoid to stay alive and healthy.

    “No one can make you feel inferior without your consent.”
    Eleanor Roosevelt.

    Be strong. Take back your health.

    Reply
  19. 19

    Jennifer

    I found out I couldn’t eat gluten in my late 30’s. If I had been in my early 20’s I think it would be harder, so I do sympathize with you for sure. Someone above said that as you get older that you care less and less what other people think and that is very true for me. Another reason I am able to say no to those who try to get me to eat is because I am fearful of the symptoms that I get. You mentioned anxiety and that one was huge with me (along with many, many other symptoms that I later realized were from gluten). My anxiety continued to increase as I grew older until I finally went gluten-free. Without gluten, anxiety and panic attacks disappear. That alone is worth telling others, “No thank you” or “No that will make me sick!” Stand up for yourself. You are worth it. If they don’t get it, so be it. We can’t control how others behave, but we can control how we choose to react to them. With time, you will be more comfortable expressing yourself.

    P.S. Pizza is my favorite food too!! That was the most difficult. But, you will find replacements. Mostly likely homemade is the best, but there is gluten free pizza in some restaurants. You just have to ask questions on how they are prepared. Maybe someone knows of a great chain that is safe and will post it here.

    Reply
  20. 20

    Aanya

    Hi guys.
    I just want to say thank you, thank you, thank you for your support! I appreciate it so much. You’ve made me realise a lot of things!
    As time goes on, I am learning to educate and talk to my friends and family and learning to say no. I am becoming more confident in my decisions to stay away from the foods. Baby steps but deffo the route I will stick to rather than cave in.
    Thank you so much for all your advice and support. I will deffo be reading the books you’ve recommended!
    Tbh, the one thing that makes me stick to saying no without a care of what anyone will think is the knowing that if I don’t stick to my diet, there are increased risks of miscarriage. That’s enough. Screw anyone who doesn’t respect that our diet is gluten-free.

    Reply
    1. 20.1

      Gemini

      Now that’s the attitude I like to see! And I especially liked the last comment….”Screw anyone who doesn’t respect that our diet is gluten free”! That’s my motto! : )

      Reply
  21. 21

    Catherine N

    Just wanted to chime in, a little late, that some of it is cultural. I’m Egyptian, but had an Indian nanny when growing up, and there was very much of a food=love, not eating a food=rejection mindset. So that is part of it, yes I still love you, even though I am not going to eat your food.

    It is also very much of a “just take this [pill/herb tea/homemade concoction] and it will pass” mentality too.

    What about finding some kind of celiac cooking class and inviting a relative to come with you?

    Definitely bring gluten-free goodies with you to family gatherings, and maybe send out an email to them saying “Look, these are the foods I have to avoid, but these are the things I CAN eat”. Getting at least one relative on your side will also help, tremendously.

    Good luck!

    (And a general FYI, just in terms of accidental glutening, some people clean their coffee/spice grinders with stale bread!)

    Reply
  22. 22

    Tanya

    I feel your pain. If people aren’t asking if I’m still on “that diet”, they’re commenting on my weight.

    It’s not for my appearance, it’s to prevent the pain!

    Reply
  23. 23

    Emily @ Glitz Glam Gluten-Free

    I am very fortunate in that my immediate family is very supportive. But in the beginning it’s hard- especially with family that doesn’t know much about the disease. While you don’t have to give them a full lesson, a little education will help so much. I don’t know how you react when you have gluten but it sends me to the hospital so I explain to friends and family all it takes is a crumb to make me so sick for a week and dealing with the consequences for a month. Breaking down seems to help people understand it more. But in the beginning just eat what you need to for your body, not for them! Being sick to please them isn’t worth it- you could always bring snacks or dishes to eat when you get together.

    Reply
  24. 24

    porn blocker

    The writer is called Karyn Nielson although it is not her birth name.
    He is a cpa officer. Researching cryptography is there isn’t any magical
    I love most just about all. He’s always loved living in South carolina.

    Check out most up-to-date news on his website: http://tutorialdl.com/

    Reply

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