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26 Comments

  1. 1

    thetxlady

    GD I’m feeling like this is a recycle story. We told the other girl to make her own food, keep GF snacks & move out as soon as possible. Sounds to me like she didn’t get the answers she wanted & is back for another round? Holy drama llama someones not sticking to the diet.

    If you are old enough to work, you are old enough to cook. Yes its rude & cruel, but it sounds like dad is where you got this & he just suffers then will likely die of the consequences. As we grow older choices become something we utilize more…boo hoo my friends, family, stomach don’t do what I want falls outside our ability to control.

    Getting a job & moving out are my suggestion. If you are in those awkward teen years where you know everything but haven’t graduated high school yet, summer job season is upon you! Other option is summer school to graduate early (if I could do it to get away from bad parents, its an option). Foster homes aren’t likely to provide GF food either.
    While good parents that care, monitor foods & read labels are the ideal…not everyone gets those parents! Mine made me walk around for months on feet with 50 fractures & a piece of broken bone cutting my tendon in half with every step. I still have to bring my own food for holidays & supervise everything that gets prepared so I know what I can & can’t eat…I don’t go home much. The best thing my family ever did for me was telling me they refused to get out of the rut that was killing me…it made me feel zero guilt about moving cross country & starting my own life without them. As said before, choices! Pity party for 1 or life on your own whatever it takes to get there. Job, college, moving across the world & leaving them behind. What people SHOULD do (according to your world view) & what they will do is a lesson best learned early. Does your description make them elligable for worst parents on the planet? Yes…BUT your other option is a foster home, homeless on the streets (no GF there either) or finding your feet & USING THEM! Get another job, finish school early, do both. Drama isn’t good for a celiac & it makes others LESS likely to help you. The world isn’t going to change others to make us happy.

    Reply
    1. 1.1

      Lindsey Ennis

      while i do understand where you are coming from here, i think it’s a little hard to do for a 19 years old. moving out takes a lot of cash, im 23 and still living with my mom cause i can’t afford living on my own just yet (still need to finish up school.) also i’m sure she is looking for a job, and if not well she really needs to if it’s possible. i will say that celiac disease kicked me in my ass to the point where i needed to take a medical leave from school and work because i was so sick and it took me MONTHS to start feeling better. not sure if this is the case here. however i had the support of my parents so i never felt forced to get back in the game ASAP so who knows how i would have handled it.

      i do agree with you on the cooking for herself. heres what i say: you really do have to just start doing things on your own. i understand wanting to respect your parents and not want to upset them by refusing food, but this is your health they are messing with. sometimes you just have to stand up and say “YOU ARE BEING ASSHOLES.” I respect my parents so much, but there are times when i had to be that blunt with them (like trying to force my vegetarian sister to eat meat.)

      i really wish her the best of luck. my extended family has the same mentality as her parents so i can kind of relate. they’ve made fun of me for not eating food at family parties saying “its ok to cheat. you are being a little ridiculous”. totally sucks when people don’t take your medical issues seriously, but it has made me stronger.

      Reply
  2. 2

    Miss Dee Meanor

    Has a physician explained the dangers of this disease to at least one of your parents? Sometimes having an MD expain the dire consequences of not following the diet in a face-to-face consultation gets the point across especially with older adults.I would suggest talking to the physician that diagnosed you and asking for help to impress upon your parents that not following the diet can result in death. If that doesn’t work, then perhaps he/she can suggest a local resource for you to contact in order to secure your own food until you can move out.

    Reply
  3. 3

    Linda

    This is abuse and neglect. You need to collect a lot of information. Sit them down. Explain that this is not a joke and that it is life threatening. Celiac almost killed me. I know it’s hard. You are your only advocate here. I am so sorry your parents aren’t fighting for you. I was told for years that I made up all my symptoms. That they were all in my head. I wasn’t diagnosed until I was 35, having horrible seizures that were wiping out my memory and ability to retain any new information. I know others who have nearly died from malnutrition.
    Fight for yourself. It is a fight for your life. Do not let anyone else tell you it isn’t!

    Reply
  4. 4

    thetxlady

    Sorry GD but this read as a tough love moment. I’m doing drama free as much as I can this year, diet is working :)
    Much love

    Reply
    1. 4.1

      Gluten Dude

      I’ll say it was tough love ;)

      I understand where you’re coming from, but this is not a retread. I get A LOT of these types of emails and every once in awhile one hits me and I add it to the blog.

      I did not get any sense that she was asking for pity. She has parents that treat her like sh*t and she is reaching out for support and ideas.

      But I am sure she will take your email to heart as well.

      Reply
    2. 4.2

      Miss Dee Meanor

      Sometimes tough love is needed, Txlady..:) I got the impression that she was just wanting them to understand the disease, but wasn’t presenting it like her life depended on them doing so. Like you, I didn’t get the impression this was a child under her parents’ protection since she stated that ordinarily she would shop and prepare her own food, but has recently lost her job and the income to buy it.

      I didn’t think about it, but it is hard to believe her parents wouldn’t be willing to buy (or are already buying) plain meat, vegetables, beans, and gluten-free grains like rice. If that is the case, then she could still be fixing her own healthy gluten-free meals.

      I got the feeling she just wants them to understand the seriousness of the disease so they could share the same meal and sadly this may not ever happen. You are right though..if she is an adult then ultimately she is responsible for her health.

      Reply
  5. 5

    Lisa Mims

    I’m an attorney who does Child Protective Services cases. If this girl is young enough, a foster home would HAVE TO provide a gluten-free diet. If this is a teenager, legally this is known as medical neglect. (And it’s a crime.) If the letter-writer is a teenager, she should call CPS on herself, and get someone else to feed her. Again, if the letter writer is a child, this kind of medical neglect is a crime.

    Reply
  6. 6

    IrishHeart

    Legally, this is not a “child protective” case scenario.
    She said she was working, but lost her job recently.
    She’s not a child.

    I do not know how old you are, Mary , but if you are old enough to be working full time and going out with friends, you can make her own meals.

    The fact that your parents are in denial about your celiac disease is troublesome to me. Your father’s stomach hurts? well, he should be tested for celiac! (as all first degree relatives should be)

    Read this:

    http://www.celiac.com/articles/22070/1/Talking-to-Others-About-the-Gluten-Free-Diet-by-Danna-Korn/Page1.html

    The truth is, hon—you’re not a little girl and you need to make it clear to your parents that you have a life-threatening autoimmune disease and if they do not get it, then have your doctor explain it.

    Find a job, even a part time one– as soon as possible –so you can buy your own food. Your parents are not just being difficult about your celiac diagnosis, they seem to be lacking in empathy and concern for their daughter. For the life of me, I cannot understand this kind of thinking and I wonder why some people have kids in the first place if they cannot be loving and protective.
    (But that’s a rant for another day)

    Looks like you will have to assert yourself and be your own advocate.
    Good luck!

    Reply
    1. 6.1

      Janelle

      I had a job at 15. This could easily still be a minor.

      Reply
      1. 6.1.1

        IrishHeart

        She says she’s 19

        Reply
  7. 7

    Lima Bean

    Usually, when people act this way (mean and uncaring), it is not a new behavior. They have probably always been this way about things. I have a feeling they would have found something to be mean about if it weren’t Celiac. If you had diabetes, I bet they would try to load you with carbs and dismiss your illness, too.

    You could try one more time. Sit down with them when nothing else is happening. Explain it is a real illness that could kill you, lead to infertility (do they want grandkids?), etc. Maybe look at the Univ of Chicago Celiac center site and print out some easy to read stuff to show them? If that doesn’t work, well, you know where you stand.

    Where you stand is – you must get a job and move out. If you ever have kids, they cannot be left alone with these people. Even if your child does not have Celiac, these people have shown that they don’t care what is safe or healthy for others.

    I’m sorry if you find this harsh. We can not choose our relatives. Sometimes, they are not good people to be around. If this were friends doing this to you, you would distance yourself from them.

    Reply
    1. 7.1

      Lima Bean

      Let me add – I am assuming we are talking about an adult here. If she is under 18, that is a different matter.

      Reply
  8. 8

    Andrea F

    If Mary is an adult, and able to work, (even though she currently is out of work) then she is able to do the shopping and cooking for her parents. She could have her parents give her the money to do the shopping, then do that and the cooking to keep herself safe.
    And she needs to see if one or more of her friends wants a new roommate as soon as she finds work.

    Reply
  9. 9

    Jersey Girl

    Mary-

    You need support, you need understanding & love. I am with Dude, a phone call intervention sounds like a great idea (who knew you were so smart!). Or, if you have skype, you could teleconference it.

    Totally disagree with comment one.

    Battle on Mary..
    xo-
    Jersey Girl

    Reply
  10. 10

    Catherine N

    Maybe your mom feels embattled, as if by rejecting her cooking, you are rejecting her. I agree with getting a doctor to talk to them, but maybe you could offer to cook meals a few times a week. That would give you leftovers you could eat, maybe your dad would have a couple of meals where his stomach doesn’t hurt, and your mom would not have to cook, and could also see that gluten-free isn’t necessarily tasteless/icky.

    The ideal thing would be to get a space of your own to be gluten-free, but until you can, maybe that would help…

    My parents glutened me a couple of times unintentionally, and ‘get’ it better now, but it is still worrying having family meals….

    Gluten Dude…the security question is math! ARGH!

    Reply
  11. 11

    Nancy in Washington

    I feel your pain. My genetic tests came back showing that I got it from one of my parents. I have spoken with both and asked them to get tested and the surprising response from my mother was “how is this going to benefit me (speaking of herself)?” Neither were showing any symptoms of Celiac but, I wanted to know for myself which side of the family it had come from. My mother’s doctor told her it was NOT genetic and that I was an isolated case so there was no need for her to get tested. Now no one in my family is showing any inclination to get tested and I’ve pretty much been ostracized by my entire family. I might as well have leprosy as far as they’re concerned. I have sent them articles and links about Celiac disease over the last 6 months but nothing has changed. I’ve come to the conclusion that I just have to march to the beat of my own drum and heck with everyone else. It hurts but you’re going to have to do the same.

    Reply
  12. 12

    Tim

    The key to turning a situation like this around (as others have been saying) – from uncooperative, chaotic, and ignorance driven – is to educate those involved, or, force cooperation. Obviously, but this gets lost sometimes amid the chaos…which is driven by the attempted solutions in an uncooperative house.

    If anyone else in the house has a gluten intolerance and hears it officially, that’s forced cooperation, and is the best way to drag unwilling family into the new GF lifestyle. After acknowledgement, some degree of progress should follow.

    And maybe there’s another way, too…education through outside (GD) intervention! The kind of tact required to make it work is an art form, though, I’m sure.

    Reply
  13. 13

    Matthew Kun

    I hear you… parents can sometimes be really stubborn. Talking with an MD helps a lot sometimes, but we can only hope it does. In my case I was only 7 when diagnosed, and it was beacouse of my mother, so I’m not here to complain. I’m 21 now and when I get home sometimes she still makes me fresh bread etc.
    But…my GF was also celiac, and her mother could not accept this, she said It’s not a real thing, you can eat the same. She was 17, and decided that she’s old enough to follow her own thoughts. So she started the diet by her own, and within a month her mother realized it’s important for her. She started to check gluten-free living on the internet, asked some MD about it etc. Now she cooks for her doughter absolutely gluten-free and also started to follow the diet. She claims she also feels better (and very bad about her behaviour).
    All in all: you have to stand for what you belive in! Not everyone is as lucky as me, but with some strenght you can live gluten-free by yourself. :)

    Reply
  14. 14

    Gluten Dude

    Hi folks. I just heard from Mary via email. Here is what she said:

    “I read the thread. While some may be harsh, there was a lot of good advice. I am actually 19. So yes I am old enough to be on my own, financially I can’t in the immediate future. Sometimes bad things happen for a good reason. 2 weeks ago I was hospitalized for a kidney infection. The cat scan and test at the hospital showed I have fatty liver disease as a result from malnutrition which my doctor said is most likely caused from celiac. I think that opened their eyes a little though my mom still hasn’t and probably will never change the way she cooks. My older sister was diagnosed with lupus a few years so autoimmune diseases are clearly in my family. For some reason my parents understand my sisters illness but not mine. Thank you so much for your support “

    Reply
    1. 14.1

      IrishHeart

      Oh , for pete’s sake….where do I start?

      Fatty liver disease IS caused by celiac (not “most likely”–just ask MY GI doc who understands Celiac)–unless you are a raging alcoholic.?? that’s the only other reason for it.

      …. and Lupus is most definitely related to celiac, Mary …..and YOUR SISTER should be tested for it —ASAP !!!!

      Time for your parents to take their heads out of the sand and start behaving like responsible parents.

      Celiac is hereditary and unless you and your sister are adopted,
      one of your parents has it, too. (and maybe both) Mine did.

      If your family does not believe me, start reading valid celiac research.
      Please buy the book “Real Life with Celiac Disease”

      http://www.amazon.com/Real-Celiac-Disease-Melinda-Dennis/dp/1603560084

      and if you cannot afford it, please… tell the Dude and promise you, I will send you and your parents a copy.

      Time to stop the madness,

      Reply
  15. 15

    Alice

    Mary, I hope that the recuperation is going well! Hopefully a silver lining of having to be in the hospital for that will be that you’ll have official dietary guidelines from your doctor, so that may at least sidestep the ‘why don’t you eat what we’re eating’ questions.

    Once you’re feeling better, I agree with the suggestions upthread about offering to cook a few meals/week for the family – you’ll be able to ensure safe leftovers for yourself, and maybe make Celiac feel more like it’s a part of normal life. Plus, it can help in transitioning out of the ‘teenager’ role in a family, which can make all of this more complicated.

    My other suggestion is make sure you come to places like this, celiac.com boards, or vent to friends who understand about what’s going on. It sounds like your parents just don’t get it (though your mom may be coming around), and if you can get rid of some frustration before having to talk with them about the practical stuff it can help keep those discussions productive.

    Reply
  16. 16

    Laila

    We also have to keep in mind that even if Mary is given the opportunity to cook some of the meals, she’s still likely to be CC’d from the kitchen she’s cooking in and I’m sure she’s not able to buy all the food used to cook, so she’d still be getting gluten. Best of luck, Mary. I wish I had advice on how to deal with your family. :(

    Reply
  17. 17

    Susan

    There is not much I can say, except offer some additional suggestions:

    Find a Local support group.
    Finding a gf or celiac host parent / roommate…surely there is a decent person with good credentials that can help you get a start…anyone? Or at least feed you a few times a week, assuming you will pull your weigh and work off room and board until you are working.
    If you are have goals and work ethic, try hard for scholarships and get out of the house.
    Other family who can put you up?
    Get counseling..youth centre?
    Food bank…swallow your pride..do some work for them in return…no it might not be lovely and four star but you have a be realit to deal with.
    Take over cooking some meals…yes, it is not ideal but you can cut on foil or parchment, and super wash all other utensils. Stick to meals your family is comfortable with, less the gluten.
    get dr to refer family to a registered dietician

    Best of luck and strength though this…your folks obviously have some issues which might be more difficult to diagnose and heal..than your problems. Doesn’t mean we don’t love them ….

    Reply
  18. 18

    Keratee

    As tough as it may be, you have to be proactive. Try and go with your mum to buy groceries and explain why you can’t have certain things. Try encouraging her to buy more vegetables (natural foods) and offering to cook more often. You will probably have to deal with cross contamination but at least it would be a start. You have to keep pushing them to understand, its the only way.

    Sometimes parents can be stubborn or maybe they just scared to accept it for what it is. It will be challenging but just hang in there and keep trying to do the best you can.

    Good luck :).

    Reply
  19. 19

    Diana

    This sounds awful! I can’t imagine a parent intentionally doing something to harm their child, which is exactly what her mother is doing. It really sounds like her mother needs to sit down with a doctor and have a medical professional outline exactly what eating gluten is doing to her daughter.

    If her father says that his stomach hurts all the time too, he should be tested for celiac as well.

    Reply

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