My Letter to the Parents of a Depressed Girl with Celiac Disease

take celiac disease seriously

Dear Mom & Dad,

You don’t know me, but I know your daughter. She’s not in a good place and you don’t seem to care. How do I know this? Because she reached out to me a few days ago privately.

You see…I’m a celiac and I try to help my fellow celiacs as much as humanly possible. So the other day, I posted a picture of my blue sponge on my Facebook page. My blue sponge is used specifically for my gluten-free cookware that does not go in the dishwasher. This is to help prevent cross-contamination, which helps keep me safe.

There was a lot of great back and forth during the course of the day. But then I got the following private message from your daughter.

Your picture of your blue sponge and comments from people made me upset. Here at home, I have to make my food in my room. I had my own gluten free bench and cookware but everyone went out of there way to use it so I had to stop. My family makes fun of me for it. I’ve been sick for almost 2 years since my celiac started, yet my family thinks it’s not important. I’m jealous of people who have safe kitchens with kind and caring families. End of rant. I’m going to make my lunch…in my bedroom…again.

Thank you.
From a depressed celiac.

This is your daughter speaking…and she’s telling me how you make fun of her for her disease. I was angry. I was frustrated. I was so sad for her. I really wanted to dig a little to find out what could possibly cause a family to be so callous. So I reached out to her with the following response.

I’m so sorry [name retracted]. Can you tell me a bit about your family and why you think they don’t take your celiac seriously?

Here is what she said:

I know why. Just after I got sick, my brother, his girlfriend and baby moved in with us. At the time, I was in hospital a few times. I spent 2 months in bed being sick. I couldn’t do anything. My family hated it that I wouldn’t look after the baby. I lost 30kg, threw up every half an hour and i couldn’t eat for days at a time. So basically my family turned their back on me.

When I started eating small amounts of food, they gave me my bench but behind my back used it all the time. My family was there when I had to have cancer tests and they were told how important it was that I be careful of even the most tiny bit of gluten. Still didnt care. They just hate me cause I got sick and had to put myself first for a change. Health always comes first.

So there you have it. Your daughter thinks you hate her. And why? Because she has a disease that has ONE treatment only and you are making it impossible for her to stay healthy.

Since I’m only getting one side of the story, I won’t go in full attack mode here folks. But I implore you. Do some research. Learn the facts about celiac disease. Untreated celiac disease can get ugly. How ugly?

Untreated celiac disease can be life threatening. Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma.

There are no drugs to treat celiac disease and there is no cure. But celiacs can lead normal, healthy lives by following a gluten free diet. This means avoiding all products derived from wheat, rye, and barley. (source: MassGeneral Hospital)

You got that? No drugs. No cure. And untreated can result in cancer.

That is celiac disease. It’s not a fad. It’s not a joke. It’s not a minor food allergy. It’s a disease.

If you have any questions about keeping your daughter safe, please contact me. I’m here to help.

In the meantime, please take care of her. When someone reaches out to a complete stranger about her family, you know she’s in a bad place. Get her back in a good place. As her parents, that’s your job.

Sincerely,

Gluten Dude

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41 thoughts on “My Letter to the Parents of a Depressed Girl with Celiac Disease”

        1. Dude, thanks for speaking up for this kid. I would see if there are mandatory reporting laws like in places in the US when you become aware of abuse or neglect of a child. To me this is abuse in its most vile form. You might have to say something to the authorities if you have been made aware. But either way doing what you did was amazing. I hope it was a wake up call for those people. I hope this girl knows she doesn’t have to live like that and she deserves to be loved and treated with care. My heart is breaking for her.

  1. This breaks my heart. And the thing is, if she was allowed to heal, she’d likely be a fully functioning , well and healthy person, able to do the things she wants to do and help take care of the baby and other family stuff. (Whether she wants to keep taking care of other people who don’t give a rat’s a$$ about her is a whole ‘nother thing.)

  2. Those parents are such asses..why did they bother to have a child in the first place…can she not go into foster care? If I were here I would see if I could find a friend whose family understands and go live with them!

  3. Hmmm study abroad program…celiac to celiac household sounds like a good idea in this case. Who wants to start that group with me?

    1. A local student exchange group in Raleigh, NC just contacted us this week to see who could temporarily take in and provide a safe environment for an incoming German exchange student with Celiac disease. I was happy to see how hard the were working to accommodate her needs.

  4. How old is she? If she is a minor this could be considered child abuse/neglect. Knowingly sabotaging her food prep area and ignoring her health issues ……all sign of abuse.

      1. Not a minor. Nm My other comments then. I hope she can find the courage to walk away if the abuse continues. If they won’t stop it’s unfortunately the only way for her. Tragic. I hope you helped her. And I hope she sees there are people rooting for her.

  5. This is heartbreaking. If she is willing to share where she lives maybe some of us in this community could help her with eating safely, support and possibly educating her parents. Though I suspect the latter is a lost cause if they care so little for her health.

  6. Isn’t this your second recent post about parents who seem to actively sabotage their children’s health when it comes to celiac disease? I just read about the research that the National Celiac Disease Foundation is sponsoring on “Increasing the Awareness and Treatment of the Psychological Needs of Children with Celiac Disease.” It strikes me that part of their research needs to be about the children’s physical needs, and that they/we need to encourage one of the provider centers to create and provide resources to kids in these situations so they can take concrete steps to ensure their health. Or to outline where they can get help in dealing with their parents. This girl can’t safely cook on her own, calling CYF or petitioning for independence doesn’t seem practical, so what can these kids do? And what about even younger ones who don’t have the ability to email for help? Seems like we have another advocacy mission!

  7. Dear Gluten Dude,

    These parents may be any combination (or all) of the following: they may not understand Celiac disease, may be in denial about their child’s disease, may be mentally ill, may be cruel, and/or just be extremely, extremely [Darwin Award-level] stupid. I say this after trying to explain to my mother FOR YEARS that her cigarette smoke flares my asthma. She still thinks that lighting a candle makes her smoke [magically] go away!

    No amount of explaining my disease to my mother will ever get her to change. I fear that this young celiac is in a similar situation. As an adult, I now control the environment within which I see my mother. Obviously, this young lady is too young to control her environment yet, so she must utilize any adult who may be in a position to help her – not only her doctors and nurses, but also perhaps a school counselor, social worker, and/or trusted teacher. School counselors and/or social workers should be able to rally the appropriate resources for this girl and perhaps get through to her family.

    Please let us know how she fares if she gives you any updates. I am praying for her.

    Regards,

    Debbie Ann

      1. Brenda Stewart

        But did her parents read the blog post? I’m sure the comments were a boost in providing her some support but what she really needs is for her parents to understand the disease and show their love for her by making the effort to provide gluten free food in a safe environment that also includes her in the family dynamics.

        Praying for her.

        B

        1. I have strong feeling about this because she is talking about my parent. They will not change; they are too self absorbed, and likely always have been. She is a tool to them and when the tool breaks, toss it out.

  8. This has to be one of the least respected diseases I can think of. I’ve been amazed how many people just instinctively minimalize it without feeling any responsibility to research it first. It’s just odd, since other diseases and disorders usually garner at least feigned efforts of respect and support.

  9. I have tears in my eyes as I read this. Please let her know that she is a valuable, worthy human being who deserves love and respect. If there is any way for her to leave her current living situation and move into a new safe home, I pray she explores that possibility. Once she is on her own she can set up some healthy boundaries between her and her family members. They may not mean much to her family, but they might give her some safe space to do some healing – physically, mentally and emotionally. You are worth standing up for yourself and you are worth having a healthy, safe place to live!!! I will be praying for YOU!!!

  10. thank goodness you are here. Glad she felt she could unload and got some support back. Thanks Dude for always being there.

  11. Just want to send a “hug” to this young one. I’m so sorry your circumstances, wish you were able to change them. Please be encouraged by staying in touch with your fellow Celiacs here at Gluten Dude’s page and with Gluten Dude and his powerful presence in the Gluten Free community. Hang in there, eat well and safe, dream of the day you will be able to be on your own and do what you can to work towards that goal!

  12. Thank you for helping her Dude. I have to say, as a hospital dietitian, this is the hardest part of my job. Often parents just don’t want to be bothered and are only thinking of themselves. Not just celiac, but a 250 lb 5th grader whose parents just don’t want to be bothered changing the families diet. Just put him on a diet they say. No, it doesn’t work that way. You need to do a better job with what you bring into the house, you need to learn some things. Or a child with allergies and the parent says I don’t think he’s allergic to that, he’s always eaten it. But he’s sick. So many parents do not want to inconvenience themselves that would make you sick.

  13. Dear Gluten Dude,
    I follow your blog religiously but I rarely comment, however, I did not want this follow Celiac to feel alone. I was diagnosed in 2012 and my father was diagnosed in 2014, however, I still cannot eat safely at their home!! I have not been supported by my parents or sister at all. They have the mind set of “Oh a little won’t hurt! or You are being too strict. or my favorite I do not react so I am fine with this or that!”. I am Thankful that I am an adult and do live in my own home, however my husband doesn’t “get it” and therefore is not supportive either. He does the best he can. Who I do have in my corner are my two adult sons whom have gone out of their way to make me feel “normal” in every way!! Three sets of eyes are defiantly better and safer!! To the reader I say this: ” Soon enough you will be in complete control of your own environment. See your family as a platform for those social interactions that your will face out in the ‘real’ world. Use everything negative they throw at you and use it to elevate your control. For example: So you fix your meals in your room…..well, bring it to the table and show them how you can still participate. Do not let them separate you any more then they have!! This will also, help you feel comfortable at a work luncheon/school events etc. . See how you can take a negative and make it positive. Even if it flops with the family; you are learning real skills that will help you in social setting and with negative people. Rise above, embrace the challenge and you will be the better person for it!! Good luck!! You are not alone!!:) You can do this!! AND you are loved by all of us with Celiac Disease!!

    1. I appreciate you following me and glad you left a comment. Because it was a beauty. Glad you have the support from your sons. The rest of your family? No comment.

  14. To the young lady with celiac –

    One of the hardest things in the world is to take care of ourselves even if those whom we love most in the world mistreat us. (I speak from experience here.) It sounds like you are learning this lesson MUCH earlier and much more successfully than I did. (I was in my late 30’s before I started to catch on!)

    I’m proud of you and know how tough this must be for you. Love from Austin, Tx all the way to your home. Keep up the good work of parenting and protecting yourself.

  15. This young lady needs to understand that her family is emotionally and physically abusing her. The emotional part is obvious. The physical abuse comes directly from their efforts to sabotage her diet. People like this don’t change, education will not help them; they are a vast empty wasteland of callousness and stupidity and perhaps even evilness. Therefore she needs to change her circumstances. Paraphrasing from a website for abused women — 1) You are not to blame for the abusive behavior 2) You are not the cause of the abusive behavior 3) You deserve to be treated with respect 4) You deserve a safe and happy life 5) You are not alone – there are people ready to help you. The young lady needs to contact a local crises center for victims of domestic abuse. She should be prepared for (perhaps) some incredulous looks and should ask them to view this blog, especially Gluten Dude’s response. If this is not possible, perhaps there is a trusted neighbor, clergy member, or social worker she can confide in. Somehow, some way, she needs to initiate action that will begin her journey away from this abusive situation. That may not be easy as her self esteem will be in the tank from this long-term abusive environment. Taking the first step will be the most difficult, but hopefully each next step will become easier. Keep us updated, if possible, Gluten Dude.

    1. you are right one. this is abuse. they are allowing her to be poisoned. i hope she lives in a country where women can move out on their own. that is her only hope, but if she is too weak and sick to move she needs more support. poor thing!!!

  16. Dear depressed coeliac

    My heart goes out to you. Am sending you hugs. Sorry that after dealing with such horrible symptoms from coeliac disease, you were treated by your family with disrespect and they caused you to become ill again. The fact that they are so needy and selfish that they actually resent your illness since it means you are too unwell to serve their needs is actually an alarm bell that they have some type of dysfunctional personalty disorder. As they are unable to provide a safe, respectful home for you while you recover from this illness, I hope you can look towards moving to a safe place for your recovery, whether that is women’s shelter or other safe place. The road ahead may seem scary, but I believe that now that you are armed with the knowledge that you have the right to be RESPECTED and protected from the triggers for your illness, you can know in your heart that when the time is right, moving is the best decision both for your health and for a happier future. Alternatively, If you are unable to move just yet, perhaps you can make it a goal to spend time with those who respect you and keep seeing your doctor and telling them what your family are doing to make you become ill. Your health and your happiness matters and we support you in finding a happier, healthier future, in whatever way you can. oooxxx

    1. that’s so sweet of you! i was thinking we could raise funds for her, but she sounds like she could be in another country, and if she is in a country where woman have no rights, she could be screwed. makes me grateful for living alone in the USA.

  17. This breaks my heart. I don’t want to say it’s easy to have a “mixed” household, (my son is diabetic, needs whole grains and fiber to help regulate blood sugar, my daughter is celiac) but it’s also not that hard. I keep everything separated, make simple, whole ingredient meals (meat, veggies, fruits) and ask both kids to double check me. My daughter reads and rereads labels, my son helps research recipes that contain non-wheat fiber that supports his diet. We work together and have lots of respect for each other and want only the best for everyone’s health. I also understand we’re going to make mistakes. Realizing I will have times where I miss an ingredient in a label or use the wrong spoon to stir a sauce makes me more aware of when these mistakes occur and makes my whole family comfortable keeping an eye on me and the meals I cook. We’re a team. Our health is a family responsibility.

  18. What a cruel from of punishment. anyone who would poison their own child and or banish them to their bedroom with a bench is cruel for anyone, and should be illegal. My heart is angry for her. I hope she can find the anger she needs to get out of that situation.
    GD, Is there anything we as a cd community can do to help her out? can we help to raise funds to help her find a place of her own?

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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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