We all get angry at celiac disease at times.
That’s why I allow people to send in their celiac rants.
I think it’s real important not to keep things bottled up inside.
The idea is to let them vent and then hopefully they can find some peace and move forward.
But what happens when it is not YOU that has celiac disease, but it’s your child?
And you simply cannot get over the anger and grief you feel?
Here’s an email I received this week. It’s from a mom who is struggling to move forward.
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Dear Gluten Dude,
I just wanted to write you about how much I enjoy your blog. Many times it brings me to tears.
My 12 year old daughter is the celiac in our family. She was diagnosed at age 4, so she has never known anything different.
She handles everything better than I do. She really does not mind eating different things than her friends and rarely gets upset about things she cannot have.
But I still have this grief for her diagnosis that I cannot get over.
It pretty much has made me lose faith in God.
I’m just so angry and sad. Mostly about all the difficulties she will have in high school, college and in life.
She has no idea how hard things will be for her when she gets older.
I of course have all the usual anger etc. when servers mess up or clueless people make stupid comments. But I can get over that.
Any ideas how I can heal this incredible grief I still feel over her disease?
I know I need to accept it, but I just can’t seem too.
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The tough love answer is that you’re going to have to accept it.
I know…easier said than done.
But your daughter will follow your lead.
And if she sees you angry, bitter and resentful toward the disease, that is most likely how she will feel as well.
Celiac sucks…yes. And it’s a lifetime disease…yes.
But it can be managed. And it can be managed without expensive medicine with god-awful side effects.
Help her to embrace the hand she has been dealt.
Here is one of my favorite quotes:
Find some peace with it and you’ll be amazed at how much better you’ll feel.
The best of luck to you and the best of health to your daughter.
What advice do you have for her?
I’m the one iin the family with celiac. I have one son, and it looks like he got dad’s lactose intollerance, but so far so good on celiac. As for me, I was actually thrilled with the diagnosis, as it explained over 20 years of mis-diagnoses and at least I didn’t have MS anymore. Yes, I have to be hypervigilant, but I’m also blessed with a husband and son who watch out for me. They want me healthy, too. It’s a life worth living. But, that’s me.
My lactose intollerant son? He has autism, and like your daughter with celiac, he will never know anything different. And, neither will my husband and I. It’s all about dealing with what you are handed, and like GD said, it’s also about how others see you react to it. And, as hard as it may be, find in each day what God has given you back. Your daughter, with your guidance, will see that, and will learn to deal with those stupid people who have nothing better to do than to make stupid comments at other’s expense. For her sake. That’s all that matters.
Good luck.
Both my children were diagnosed in high school last year.
All I can suggest is that you find peace in knowing she has this auto immune disorder and that you have been able to keep her being in pain.
It took 16 years before my son was diagnosed and he suffered his whole life up to that point. Be grateful that your daughter had a good doctor that knew what the problem was.
Yes there are challenges to being a teem ager with Celiac Disease, and yes many people just do not understand that they can not have gluten at all but that is true for many things in life.
My husband was also diagnosed and honestly he has the hardest time accepting it.
My son was so relieved to finally know what was causing his symptoms that he has no problem accepting it.
My daughter follows he diet religiously but is angry that every social function is a possible problem for her.
They have all learned to eat before going to a function instead of trying to make sure there is something there they can eat safely. Most of their friends make sure they are safe. At school they will often ask if something they are eating is gluten free because they do not want them to be in pain or feel sick. That took a little time but all things new do.
One last thing. You probably do not want to hear this but there are much worse diseases out there. Be thankful this one can be controlled so easlily. No horrible medications with long term side effects. Just diet and products. I know it is not easy but it is doable.
Learning to make social events about spending time with friends and not about the food is the best way to get through it.
Take care
This comment is from my Facebook page:
I must be an anomaly, because what the hell is there to mourn and be angry about?! Maybe I’m fortunate for living in a such a GF friendly location. Or maybe because my entire paternal family has it… But, really, it’s not something to get that worked up over. Maybe she needs to get some professional help for this. Or, aim her anger where it deserves to go – the food industry that has facilitated the mutation of food so much via genetic modification that our bodies reject it as “false.” Either way, very sad for this woman.
Perhaps she needs to be gluten free also. I think the stuff can mess with your head
I can speak from the perspective of the child. Both my sister and I have autoimmune diseases and we were both in our late twenties when we first got sick and were diagnosed. My mother feels very guilty about it and has said many times that she doesn’t understand what happened – she did everything right. We were breastfed, never had junk food, ate healthly homecooked meals every day, etc. Processed food didn’t exist in our house. Nobody smoked. Yet we still got sick.
I have the most wonderful parents who showed unconditional love and sacrificed so much so that I would have a good life.
They just gave me bad genes and there was nothing they could have done to prevent that (short of not giving birth to me, but that’s not an option!).
And that’s what I tell my mom all the time – I’d rather have bad genes and good parents, than good genes and bad parents.
Clearly this mother loves her child and has taught her child to cope well with her disease. And supporting her child in this way is the best thing she can do. Forget the bad genes and just focus on being a good parent.
Another one from my Facebook:
I have found that there is nothing harder in life than being unable to fix the pain that my son is in. It is THE hardest thing about being a Mommy!
It sounds like you are doing a phenomenal job in raising your Celiac baby girl!
She is obviously handling it like a champ and its rare that at her age she is so accepting about being around her friends and knowing that she can’t partake in most of the goodies!!!!
You have taken the first step in making yourself feel better about your grief by emailing Gluten Dude. I’m sure your sadness over her CD will NEVER go away but KNOW that this is a great group and you will find SO much love and support that it will blow your mind at times!!!!!!!!
Good luck and keep up the fantastic job with your amazing little girl!!!!!
And another passionate one from Facebook:
How do I answer this without starting a war…
My daughter was the first to be Dx’d, then myself, then my son. I/we have absolutely no problems with the diet, we’ve accepted we have it, I am a very loud vocal advocate for the disease, I am well educated on it in all aspects, as all 3 of us suffer different additional issues (myself having the most).
I have no issues with Celiac Disease, I no longer “miss” foods, as I can easily find replacements.
That being said, I did lose faith. I got tired of people “praying” for me, suggesting I go to church, etc. Why? Not one “prayer” has helped me – my children are fine, I am not (and I am a strict eater – never let anyone else prepare my food).
At the beginning, before I was Dx’d, I had severe guilt, anger, frustration – until I learned more. I didn’t DO this to her, to them, I didn’t do this to ME – it just is.
It is our fate, it is our life. It cannot be changed, therefore accept it, embrace it, live it.
(But I do it without Faith, without God. I do it with Hope, Education and understanding.)
I have three children, all biopsy diagnosed at three different times. My nine year old son was diagnosed at age 2 after a lengthy illness, my 3 1/2 year old son was diagnosed 2 years ago an my 11 year old daughter was diagnosed just six months ago. She has been the hardest, as she had no symptoms at all, I just asked the doctor to test her because she had never been tested and was having blood work done for something else. I have been through this grief process three separate occasions, and it got harder each time. The boys were so young that they adjusted without an issue. My daughter is still adjusting, and she has her good and bad days, but she knows she feels better( although she really didn’t know she felt bad in the first place), and that’s what keeps her going.
Every time I start to get riled up about it, whether we are trying to go out to dinner, to a party, or she just wants to spend the night with a friend, I have my moments of why, why, why and some sadness and even some hidden anger. BUT, then I silently remind myself that she, along with my two sons, are here, alive and fairly healthy, living a crazy life full of school, sports, friends and family. There are so many other things that could be wrong, and that our life may be a little more difficult than others, but my kids are here with their father and I, and We can’t ask for anything better than that.
There is a line in a poem that says, “In acceptance lieth peace.” Two things need to be acknowledged here, one that your child has celiac disease, and two, that you are angry. When you accept these two truths, you will begin to move forward in a more productive way.
It is possible that you have hidden your anger and have never really dealt with it, so it has mushroomed to where you have let it affect you other areas of your life, namely, your faith.
Take a big breath, acknowledge your grief, acknowledge your anger, and don’t beat yourself up over it. Accept it and go forward. Do the next thing. Don’t force yourself to “get over it.” Allow this situation to begin to increase your faith instead of push you away. Don’t judge God by what happens to you or how people behave or react to this disease.
Practice a form of mindfulness when it has to do with your emotions. Emotions and feelings are a gift from God.
Be thankful that your child received an early diagnosis, which is the best thing that could have helped her healthwise. Think about good she feels physically compared to how she would feel without the diagnosis.
Read books by Danna Korn who’s son was diagnosed at an early age.
I am the one in my family with Celiac Disease along with my mom (my mom was diagnosed with it after I found out I had it). When I found out I was diagnosed with it I was 16 years old, I knew what normal food tasted like and it has been a hard transition. I honestly found relief in being diagnosed with Celiac Disease though. I was sick pretty much my whole life and I have been to over 30 doctors trying to figure out what the heck was wrong. So, when I was diagnosed it was more of a relief for my family and I. I am currently in college and really don’t have a problem with it because I bring my food and when I go out with friends, they make sure its to a place where I can eat at. I do get angry at times about having Celiac Disease, but I think we all do. I don’t just have Celiac Disease though, I have a lot of other food allergies, so it makes eating even more interesting. How I look at Celiac Disease: Just because I have the disease doesn’t mean I am a disease, but simply a person who is living with one.
From Facebook:
You experience it, move through it with consciousness of what is happening, and one day, you are mostly past it. Take action; practical steps to help cope with the anger. Plan meals, hunt for recipes, read research. It will lessen.
More awesomeness from Facebook:
I don’t have a child so I can’t relate in that way. But here is my experience.
Angry? Maybe a little. I can’t have another Girl Scout cookie without feeling sick.
However in the grand scheme of life…10 years ago I had open heart surgery and lived out of my car for 5 years due to bankruptcy from medical bills.
Every sign and symptom I had cold be attributed to something else. I mean who wouldn’t be anxious from those events. This past year I was getting worse – especially physically. I couldn’t lose weight no matter how little I ate. I was getting plantar faciitis – I was used to running marathons. In October I couldn’t walk barefoot let alone run.
Thanksgiving Day 2012 (yes what a day to start!) I gave up gluten.
Within a week I was walking barefoot, and running again. Signs and symptoms of my heart problem were coming back. I couldn’t stop coughing when working out. It scared me. Within 3 weeks I had 46+ signs and symptoms go away. Some I didn’t even know were an issue. That anxiousness is gone, I feel more grounded than I EVER have.
Oh, and the running??? Tomorrow I will be at the starting line for the Goofy Race at Disney World.
I am grateful beyond words!
MOM – Let your anger go! Be happy your daughter can live life more healthy than if she didn’t know about celiac. Be grateful she found out now instead of 10, 20, 30 years from now when her health is really bad!
Let your grief run it’s course, Then move on. Make it an adventure!
That is what is weird about life, we don’t know what happens next. I’m celiac, it sucks at times but that is the hand i was dealt. It could be worse. Make the most of the gifts you have, embrace them. Worry is a wasted emotion, take that energy and make it positive. You are in control of your life. Take back control. I have not lost my faith, i believe this has made me a stronger person for it.
I wish the best for you and your
daughter…
Best,
Jersey Girl
“There are things that must evoke our anger to show we care. It is what we do with that anger. If we direct that energy we can use it positively or destructively.”
Archbishop Desmond Tutu
I tried prayer, and then began thinking that a lot of prayer is asking an alleged all knowing omniscient thing to correct its mistakes. I thought about people over the years in dire circumstances praying to a God they faithfully worshiped to be delivered to safety. However, It didn’t work for the victims of the KKK through the years or for those taken by serial killers. It didn’t help guys trapped in sinking ships in WWII, or those pinned inside a bomber spinning towards earth after being shot down. It’s never helped me in stopping my mom from drinking, or from stopping my dad from being cruel and spiteful. It didn’t help when my first marriage began to fall apart. Personally, I think praying to a God is a waste of time.
What kept me sane (some of you may question this) and put that gun away was thinking logically about my health issues and the problems others have that are far, far worse. Diseases just happen. DNA gets screwed up sometimes, and we suffer because of it. I know the majority of people in this group don’t think highly of doctors or the medical system in general, but if not for doctors, counselors, researchers, and drugs I’d be dead. So would many of you reading this. Modern medicine, science, and dedicated individuals who have been educated about the four chronic diseases I have are the reason I can sit here and rant. And drink GF beer, eat a decent GF pizza, make sex with my wife, and jump out of airplanes, dive a beautiful coral reef, ride my bike, look at the stars, laugh with friends, and fucking live the life I have inherited unburdened by the baggage of some sort of religious belief that I deserved any of this.
I don’t have kids either, but I have worked with a lot of kids in day care, as a knitting teacher, and with all my friends kids – and the basic message I want to say is – kids are a lot more resilient than we think.
Its all our reaction to things that makes up this grief and sadness. We know what things taste like, do things, etc. and so we think of what will happen to them – except they do not have those expectations, so it never happens the same way. Its our expectations that feed that grief, and if we learn to let go and live in the present, that grief goes away.
I’d encourage the poster to seek out other parents in her area to network with – honestly, just feeling like you’re not alone sometimes can substantially ease people’s pain and fear. Even if they’re not CD parents, the same thing happens with type I diabetes, lupus, juvenile arthritis, hemophilia, deafness, and blindness, etc.
I have celiac. After spending over three decades getting progressively sicker until I needed emergency surgery which is what led to my diagnosis, I was initially extremely angry. I was mad as hell. I plead and bargained with God, begging him and telling him that anything but this. This is too hard. It has been a year now, and I have long since made my peace. I have a disease, being pissy and acting like a petulant child helps no one. Holding onto my anger hurts only me.
As for losing my faith? I could have. We all could have. And sure, I was mad as hell. I had rants for God as a matter of fact. But the circumstances that led to my diagnosis were one thing, led to another, led to another, and all were just circumstantial on top of circumstantial. I don’t believe those things just happen. At the time they were happening, I was angry, frustrated and didn’t understand them. I see now though that if any single thing had happened differently I would probably be either dead or on death’s doorstep today. My diagnosis didn’t cost me my faith, it reaffirmed for me, beyond a shadow of a doubt that there is someone looking out for me. I don’t ask you to believe what I do, simply pointing out that sometimes you just need to travel a little farther down the road to have the perspective you need to see clearly where you’ve come from. This applies to so many things in life.
If, after 8 years you are holding onto grief, you should look into professional therapy. Of course, celiac sixth sense here too, (the “I see celaics” syndrome) but celiac causes a lot of emotional problems as well. If you haven’t been tested, get tested. It is possible you’ve held on to that grief for 8 years and can’t cope because gluten is messing with you too.
like, like, LIKE
Couldn’t agree more!!
I suggest mom get checked or go GF for a couple of weeks. The neurological consequences of celiac disease or gluten intolerance are significant in some people. She may notice significant changes in her own health – physical and mental/emotional.
So many more passionate comments on my Facebook page. I think just sending you there would be easier:
http://www.facebook.com/permalink.php?story_fbid=292789277490966&id=258777454161458
Thanks.
I have three daughters who were diagnosed at the same time with celiac disease (ages 11, 14, 16) nine years ago. The oldest was so anemic and so depressed she was suicidal. We almost lost her. The other two had no symptoms. So, I am very thankful that they were diagnosed when they were. I am thankful that changing their diet was all I had to do (yes, it was a steep learning curve- before labeling laws!). They all feel better and are active, vibrant young women.They are in control of their lives and their diets. They are all eating MUCH healthier than their peers and are more independent too. None of them have secondary auto-immune diseases and are statistically less likely to now. They did not suffer for decades like so many other celiacs that I know now. Celiac disease?…yeah, it sucks but in the big picture for them?… it is nothing!!
Mom, find reasons to be thankful. There is so much out there that is worse! You have a healthy, wonderful daughter. Celebrate that. Like others have said, focus on the positive. It will help over time and is a good example for your daughter!!
I don’t believe in a mean, retribution oriented God. I believe God is good and that we are not always open to His message because it is not what we want to hear. Find peace in your heart first. After that, who knows?
Dearest Mom, your post really touched me and my heart goes out to you. I’ll try not to make this too long…
My son (who at the time was 3) was diagnosed 5 years ago, about a year after me. In regards to my son, I dealt with anger (and still do sometimes) toward the medical community for not taking me seriously.
Regarding myself? I was very angry about my diagnosis for a long time. When I still had symptoms even on a gluten-free diet, I was diagnosed with severe food allergies which limited my food choices even more. Which limits a lot of other things in life.
Enter more frustration. More anger. Etc. Etc. Etc. In other words… not a pretty picture nor a great attitude model for my kids.
What really changed my thinking (and it wasn’t an instant epiphany but a gradual awakening) was the idea of gratefulness. Faith is really grounded in gratefulness, and vise versa. Could I consider the idea that what has happened in my life and in my child’s life could be a good thing? After many years, now I can.
When I was mired in anger and frustration, I couldn’t see the good that was in the midst of our situation, but now I could fill a book with all of the wonderful things God has done in our lives because of celiac disease. (If nothing else, I am now the definition of a health eater… I was Whole9 or paleo or whatever before it was cool. ha!) I have seen so many blessings come out of this disease, but I had to be willing to look for them at first. Now, most days the goodness of our lives absolutely overwhelms me.
A book that really came along at the right time in my life was Ann Voskamp’s “One Thousand Gifts.” Her truthfulness about her thoughts regarding the unfairness of life spoke to my heart, and her story about how she pulled herself up out of that inspired me to find my own way out.
May you find yours too!
Kids are more resilient than we know. As a college kid with Celiac, I have not had the “typical” experience…no keggers for me!…but I’ve found ways to cope with it: if I am going to a party, I bring my own beverages. If I am going out to dinner, I call ahead and ensure they have something for me. Is it a struggle? Absolutely. But your daughter has never known anything different and has likely picked up on things that you have taught her about the gluten free diet–even if inadvertently! I thank God that it’s not something worse and that it’s something that’s pretty easily managed. I’m not a parent, so I don’t know exactly how you feel, but I think you should know that your daughter…she’s going to be okay, even when she gets to college. Promise. 🙂
Children learn what they live.
If you’re bitter and angry and resentful, eventually she will become the same way. Is this what you want? Of course not.
Mom, you wrote this:
“Mostly about all the difficulties she will have in high school, college and in life.She has no idea how hard things will be for her when she gets older.”
Neither do you.
You simply cannot predict what “may happen”.
Her difficulties in life will not come from having celiac.
They may come from trying to learn calculus, job hunting after graduation, a boyfriend who turns out to be a jerk. Life hands us many difficulties and we all prevail.
But she will be fine as a celiac— because she has accepted and managed this disease with grace since she was 4 years old.
You said “She handles everything better than I do.”
This speaks volumes, hon. WHY exactly are you so angry about it?
She’s not!
Is she happy? healthy? then what’s your problem?
If I had been fortunate enough to have children (long undiagnosed celiac caused me to have many miscarriages) the last thing I would do is view this disease with any negativity.
Empowering your child is the best gift you can give her,
but if you are incapable of doing that because you feel that somehow she’s been cheated or she’s not capable of handling whatever comes her way, then you need to adjust your own attitude about celiac right now. Your daughter deserves more than an angry, worrisome mother who thinks her child’s life is destined to be horrible and difficult.
She’s lucky to have been diagnosed so young, actually because she has likely avoided major complications. She will be able to have children and live a full life because an early DX and dietary compliance gives her the same chance as everyone else to live a long healthy life.
And honestly, if you are still consuming gluten, it could very well be the reason for your anger. Get tested for celiac or if you have and it was negative, just go GF and see if you drop some of this unsettling anger. Anger serves no good purpose.
Stop looking at celiac as “the worst possible thing that could happen” to your kiddo, because Mom, I assure you, it’s not even in the running. Best wishes to you and your awesome daughter!
I agree! There are worse things out there! Our friend’s daughter has Lukiemia( sp) she is only a Kindergartener. Please go and talk to someone to figure out what is really bothering you.
I was diagnosed my freshman year in college. No one else in my family has Celiac. At times it is difficult when I see all the food my friends can eat, but I don’t let that bring me down. My friends are extremely understanding of my eating restrictions and the guy I’m dating is so supportive. I don’t let celiac disease define me. I embrace this part of my life and do what I can to raise awareness and educate others. Everyone struggles with this at some point but the key is to not let it get you down. Don’t let your daughter see you upset about this. She is the one living with this for the rest of her life. You need to be a strong support system for her. My parents are mostly gluten free because of me. That’s their way of showing support. They call me excited every time they find a new gluten free product for me to try. My mom enjoys finding new recipes to try out when I come home from college. She made our entire Thanksgiving & Christmas meals gluten free. No one can tell the difference.
Also, its good to have a good laugh about it sometimes. Check out this Tumblr.
http://wheniwentglutenfree.tumblr.com/
Your daughter is going to have no problem in high school or college. I have celiac disease, an air borne wheat allergy and dairy free. It can be pretty rough, but I’m surviving college just fine! Best of luck!
-Jackie
Kiddo, you have absolutely the best attitude about life and celiac—and your parents are wonderful! You are so right:
Do not let CD define you or confine you!
I have seen that “When I went gluten free” before–and It is just hysterical! She adds more from time to time. Very clever!
Cheers!
Thank you all for a little therapy today! I love reading all of your postings! My two daughters and I were diagnosed about a year and a half ago. Being diagnosed but also being the Mom to two girls who were diagnosed really kept me on my toes. I know that I set the tone. I attempt to find a balance between being strong but also venting because my girls need that validation to know that they too can vent when they are frustrated or just plain out bummed about a situation. Even though I am supposed to set the tone, my girls really are my example. Their strength, bravery, and positive attitudes are my inspiration. To the Mom who wrote in I would just tell her to stand in awe of what her daughter is handling. A sense of humor is an absolute must in the household!!!! We find a way to laugh every single day. If we don’t laugh, things can get heavy. Throughout this journey I have learned that we’re much stronger than we know and we really don’t need to sweat the small stuff. Does it suck, yes, but their are little gifts tucked in there and you just need to look for them and see them.
I’m sorry to keep interrupting the posts, but I simply have to comment on this and say “YAAY!!” for you and your girls 🙂 🙂
Without humor, we will surely perish.
Humor is healing!
I have likely had celiac all of my life but was just diagnosed 2 weeks ago. However, during the 47 years before my diagnosis I suffered with horrific PMS, lifelong gastritis, infertility, hypothryodism, ovarian faliure, psoriasis, chronic constipation/diarrhea, iron deficiency, liver issues, and anemia. All of which I might have been spared had I had been diagnosed as a child.
So, while I can completely sympathesize that celiac sucks and that your child will have challenges keeping herself from being glutened, she might also be spared all of the challenges I was faced. Especially the infertility.
I would put on my history, but Darlena’s is so similar I don’t feel the need.
I don’t blame my Mum, she was brought up to believe that in order to show respect to a doctor, you would never question his judgment.
I don’t blame my doctors – the NHS is fantastic (not infallible, but still fantastic). The doctors told my Mum what was generally considered right at the time, and she would never question it.
But if I had had the diagnosis sooner, I would have been spared a lot of pain, a lot of pills and a lot of worry.
You sound like a good Mum; you will always worry about your child. My best advice to you is to help your child cope with the hand she has been dealt.
Go well. x
Love the responses! Dude, that was my Dads favorite quote!
I agree with the sense of humor! You need that with life.
I truly believe we go through things for a purpose and what we go through can make us bitter or a more compassionate person. It’s all in how we react to it <Dudes quote)
I would encourage the Mother to search to see if there may be a support group for Celiac children in her area. There is one close to me and I feel if she could talk with other parents it would also help. Also search online for support!
Without Celiac, I would have missed talking to and meeting some pretty awesome people!
I have to add my Dad was diabetic and had COPD. He never complained a day ever! He lived the quote…
I have celiac disease and I’m a Christian so this is my personal perspective. I was so sick from celiac I had to become obsessed with nutritional eating that would help heal me. I intentionally choose food to “God made” not man which means lots of vegetables, fruit and meat rather than trying to adapt recipes so I can appear to eat what everyone else is eating. I believe the standard american diet is unhealthy even when you adapt it and leave out the gluten. Also, much of the grains we eat are GMO, not the original grains mentioned in the Bible. I live in farm country and believe me, you have to specifically research the seed you buy to make sure it isn’t GMO. Lots of farmers are planting it unknowingly.
So how does this apply to your daughter? I believe we are the canaries in the coal mine. There’s absolutely nothing wrong with eating God made food and any stroll through a Walmart grocery will remind you how far down the wrong path our society has become. We canaries are supposed to sing and make noise about what’s healthy and what’s not so eventually people will take notice. Even though my son doesn’t have celiac (yet) he has learned to value God made food versus man made food. Your daughter may grow up to sing like a canary and make people take notice. I know that might be tough right now since she’s going through adolescence and wants to blend in with friends, but it really depends on how you teach her to approach it. Most kids take life science around 7th grade and GMO is a great topic for a report. She should take advantage of any opportunity to teach others about health and be proud of it. Let her watch the Discovery Health Mystery Illness segment on celiac and talk about having compassion on the many kids with health and learning problems who aren’t diagnosed and maybe never will be due to such poor celiac awareness and diagnostic tools doctors use. Celiac can be a calling with a purpose if you view it that way because her values come from you.
One last example…Joseph was sold into slavery by his brothers and God made him a powerful leader that later saved them. Joseph told his brothers “you meant it for evil, but God meant it for good”. Your daughter may not see her purpose in being celiac right now but there’s a good chance she will save many people she encounters in her lifetime by planting seeds. I’m absolutely certain she can be a wonderful influence for good and will make a difference in the lives of others. Life wouldn’t be the same without Gluten Dude and I’m so glad he embraced his calling. Tell your daughter to be on the lookout for her calling too.
I’m not much of a Bible guy, but I like your train of thought Jenna.
“God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.”
As the mother of a 19 year-old, diagnosed at 14, with lifelong symptoms, I can say with certainty that I am grateful he is diagnosed. Those long years when he was so very ill will stay with me forever. My guilt is not that he has celiac disease, but that I let doctors convince me that he was “faking it” and that there was nothing wrong with him.
Yes, it is not easy eating differently than your friends. And as a parent you have to tackle it head on. I brought GF Pizza and GF cupcakes to every party he attended. Brought GF pasta and GF chocolate chip cookies to every football game day. Made sure he ate before every school dance. Packed his suitcase with GF snacks, ordered a refrigerator in his hotel room and called restaurants when he went on extended school trips. Sent him to celiac camp where he was a counselor for three years. Met with the college dorm dining manager. Registered him for the college office of student disabilities. You do what you have to do. And today I have a happy, well-adjusted son who is comfortable advocating for himself, and comfortable with his disease. Not as healthy as either of us would like him to be, but no where near as bad as he was.
Most importantly we both joined the Celiac Disease Foundation as a volunteers. Finding a community to support my son and our family was critical in his success. I promise you if you join a support group, go on facebook to talk others, send your child to celiac camp, and tell yourself that while you cannot change celiac, you can change how you deal with it – you will be able to deal with it.
I believe this so strongly that I quit my job in software to become the Chief Operating Officer of Celiac Disease Foundation.
I wish you courage and peace,
Marilyn Geller
Well said Marilyn. And kudos to the foundation for raising celiac awareness since 1990. I’ve only been at it since 2012…and I’m exhausted 🙂
I get that you’re angry your daughter has celiac disease, it’s not much fun but in perspective it’s not all that bad.
She doesn’t have cancer, or MS, or a life threatening allergy or a heart problem or a serious disability – it’s a gluten free diet which isn’t all that tricky. Yes she can’t eat foods that are the same as everyone else and yes you are different and yes it sucks, but seriously…it’s not that bad. I have been gluten free since i was 2 and diagnosed with celiac disease at 17. I’ve done this whole journey and am now 26. I am grateful that it’s only celiac disease, that I don’t have cancer or MS or a disability and I have all my limbs, brain and life ahead of me. Take your cues from your daughter, if ehs’e coping that’s all good and the times she hates the diet, the times she tells you it sucks and she wishes she didn’t have it – you can be there for her.
I get that you wish you could have prevented it, that you wish it didn’t have to be like that, but it’s a simple cure with no side effects and she will grow up to be a healthy adult – something a lot of older celiacs didn’t get to have. Feel grateful that she’s not sick, that she isn’t depressed because of gluten, or angry, or sick – that she’s well and can be well for the rest of her life.
Yes it sucks, yes I wish there was a cure, but I am also so grateful it’s not type 1 diabetes, or cancer, or MS, or the loss of my arm or brain.
And from someone who’s been there, you learn pretty quickly which of your friends are dicks and which don’t care that you have to eat differently. You get rid of the dicks and you go with those who accept you. It’s like anything else really, finding people who accept you for who you are. I promise you it’s not that hard, it’s not that different and her life won’t be terrible because of it.
Feel free to be angry you couldn’t stop it, but be grateful that its something that isn’t going to kill her.
Be proud of your daughter and the fact that she has embraced this as something she can be in charge of. I am glad there are many people here who are supportive. I agree that maybe you need to look into going off gluten also. I went off gluten 1 1/2 months ago and I feel so much better. My daughter was diagnosed when she was 5 and is now 12 and she has inspired me so much. My daughter had all sorts of mental/emotional components that went with the Celiac diagnosis such as suicide and paranoia. She is much better now and is handling puberty like it is no ones business!
Education is also very important – especially to those who are ignorant. Most individuals who are GF or gluten intolerant are not off gluten because it is a fad or a new diet – they do it because it is essential to preventing the progress of their disease. Just like individuals who take insulin for diabetes.
Hope things go well for you and you can find the peace you are seeking.
16years ago my grandaughter was so ill that at 11month old she waighed only 11pounds and my daughter was told by the doctor the she was not going to make it through the week end and when he came back in on monday he wood sign the death certificate. it was a visiting doctor that came the next day who dignosed her with celiacs 16years ago you could not find gluten free on market shelves and it was not required for manufactures to put any allergins on lables such as wheat my daughter and i spent two hours reading all interdence lists on the cerial boxes only to find rice cerials contained malt barely flavoring as well as the corn cerials along with all baby cerials and formulas new celiacs have it 100times easier to keep gluten free yes its expensive but easier my 3celiac grandchildren ages 16 / 13 / 4 year all live full lives sleep overs dates birthday parties church and school functions they are all very open with the people they choose to have around them and they in turn are very understanding of the precautions needed for thier safty it is all a mater of gaining the knowledge to make good choices for you and your loved
I’m in the process of being diagnosed with coeliac disease and I’m very angry. Especially as I have T2 diabetes as well. I often ask myself, why me?
I know it’s tough. Eventually, it will become “why not me” and you’ll adapt and adjust just find…I promise.
Dear Angry Mom,
Your situation sounds so similar to ours! My daughter was diagnosed young (first day of first grade). Today she is 16 and a Sophomore in HS. First, let me tell you a little story, and then have some thing that may help you feel a bit better.
It was the first Christmas after her diagnosis. We were still figuring out how everything worked and I hadn’t had time to THINK about what Christmas would mean. My husband is a pastor. Do you know what the number 1 gift from congregation members to the pastor is? Baked goods. I realized this the week before Christmas when he came home from his office with a bunch of stuff. And the doorbell started ringing. And ringing. And RINGING. We had a GIANT pile of cookies, candies, breads, cakes, etc. on one entire counter (we’d only been here a couple years, we had little kids, people got over-excited with the treats). Before I could think about how to handle it, she was home from school. She saw the pile, sat down in the middle of the kitchen floor and SOBBED. It Broke. My. Heart. But two things are important about this story. First, that was the only time it EVER bothered her. She learned how to deal with it and we learned how to make a few favorites at Christmas. Secondly, I was talking about it THIS YEAR during our cookie baking and our first GF gingerbread house (it tanked, but was still fun. I said, “Remember the first year when you cried about the cookies”? And she was like, “WHAT?” SHE DIDN’T REMEMBER IT AT ALL.
I think I was more sad at the beginning than angry, feeling the loss of what she/we’d miss, even though I was elated that she wasn’t so damn sick anymore.
And I learned a few things:
1) It bothered me way more than it bothered her.
2) Instead of being sad, I channeled it into being pro-active. I contacted teachers and parents and let them know that if there was going to be any food, could they please call me and I would send her food separately. Pizza party at school? I delivered GF pizza. Birthday cake? Got some in the freezer. Your having grilled cheese for dinner? (Ok, that one was tricky … I could only find GF hot dog buns … but I made a grilled cheese … sorta). Making pancakes for breakfast at the sleepover? Ok, I cheated and sent a Kinnikinnick donut. And at school and everywhere else there was a tupperware bin of HER special snacks for those times when I didn’t have notice. And I’m not super-mom … I kind of sucked at cooking and baking. But I cobbled together a plan between what I could make, what I could buy or order online. Her friends started to remember and many of them have entire GF birthdays or dinners so that she can attend. They go to the special GF store and everything. And local Celiacs have started mom and pop baked goods booths at the local farmers market. Most of them take special orders. We try to eat fairly healthy, but darn it, if everyone else is having fried chicken, sometimes I just want her to be the same. So I always send food and I match it if I can.
3) Don’t freak out about HS/College. She is so self-sufficient now. If there is a pizza party, I will deliver pizza, but most of the time she says, “No, I’m fine” … and she IS. I try not to helicopter parent. She is on the speech team and they have all day (5am to evening) and overnight meets. We pack breakfast, GoPicnics, snacks, etc. for the whole day (and then I send money just in case there is something she actually could purchase). I will admit I WAS freaking out about college. She’s been on some trips … youth events, all-state choir, etc. … where they stay on college campuses. I learned that what they SAY on the phone is NOT always what happens when she gets there. So I pack food and send money (one trip all they had was a GF hot dog with no bun for two meals a day for a WEEK … I was pissed and worried that I didn’t send enough money, so now I would do re-chargeable Visa debit card as well). And I started a college file so anytime I hear about a college with a Celiac friendly cafeteria, I put the info in the file. Next year when we actually start thinking about college, we can see if any of them match her interests. And even though most college kids want to handle their own college visits without their parents, this is one area that I will be personally checking out to be SURE.
I hope this isn’t too ramble-y and is at least somewhat helpful too you. It’s great that none of us or our kids have something WORSE or fatal. But if you feel angry, you’re entitled to feel angry. But if you want to try to NOT be angry, think of some things that you could do to help her be more “normal” … even if she is handling it fine. It will help you feel better and make her feel extra special.
Best wishes to you!
I had to make sure this posted! I thought I got the math problem wrong! I need a calculator!
Oh my gosh … I FORGOT to mention. The SECOND Christmas after her diagnosis? I put a note in the church bulletin … “Although we greatly appreciated your generosity, due to our gluten-free status we respectfully request no baked goods be given at Christmas.” That solved the obscene pile of treats on the counter. Pissed some people off, but I felt good about it. And I write a lot less thank you’s now. 😉
What a great story JG2. You have a lucky kid to have you as a mom.
My daughter was diagnosed just before her 2nd birthday. While I had my moment of tears in the hospital, I was so grateful that it was this disease-one controlled by diet- and not one of the other horrible horrible diseases or conditions affecting the children I passed in the halls of the hospital for sick children that we spent weeks at nursing her back to health. That put it in immediate perspective. Yes there would be challenges and sure it’s hard but in the end we have an energetic healthy 4 year old who smiles again and just knows she can’t have gluten. Just like kids in her class can’t have peanuts. It is what it is and we plan and research and do everything we can to make it a non issue for her.
Yes it is hard and sad and I get anxiety about the future at times for when she’s at a birthday party but you cant live like that. Celiac is our life and it has challenges but really it’s not that bad. We eat so well. The food is delish..and healthier than boxed crap!
I know that at any time my 9 month old daughter could present Celiac symptoms. Or I could. Or my husband. While I am hopeful my baby doesn’t have it if she does we are ready and have got this one figured out.
Gr8 attitude!!!
My daughter is 13, diagnosed when she was 21 months and extremely malnourished. She was in hospital for 3 days and tested for all kinds of horrible diseases for which there are no cure. My husband and I were praying that she had Celiac Disease and not one of these other horrible diseases. There were children at the hospital that never get to leave. We felt blessed that all she had was Celiac compared to what else it could have been. ALL she has to do is eat different.
Now is it inconvenient? Yes. Do I get angry at people I come across that are idiots about it? Yes. But I don’t recall ever being angry at Celiac. I actually get annoyed at people that would pity her, especially in front of her. Please don’t “poor kid” her because she can’t have a cupcake at a class party.
I know my daughters (older daughter was diagnosed a month later) will be more compassionate towards others and their issues because of learning to have to cope themselves.
And God has helped us through every step of it.
I hope this mom can let go of the anger towards the disease and teach her child to cope with what was dealt and that they would not let this define them. And redirect the anger energy towards educating those they come across.
Well, if you want ONE thing NOT to be angry about, know that at least you don’t have to be angry at yourself. You paid attention to your child. You got your child diagnosed while still young, while there was still time to prevent permanent damage. My parents dismissed my sickness my whole childhood. They brushed me off and blamed me for a lot of my problems and for falling behind in school, etc. I had outward symptoms of scurvy and pellagra and really obvious vitamin/mineral deficiencies, but nobody helped me! I just can’t believe it! Who would brush off a malnourished, non-thriving child in a first-world country!?
I got myself diagnosed as an adult and went on the diet and got all of my antibody counts back to normal. But I never got well. By then my growth was stunted, I was left with a permanent spinal deformity that causes unrelenting pain and skims off the top of the quality of my life every. single. goddamned. day and makes me have to dress in layers to conceal the grotesqueness of it. Even though I’m skinny and could dress in attractive clothes if I had a straight back. People judge me because of my posture and I miss out on opportunities because of it.
I have too much other permanent damage to mention publicly (hundreds of symptoms, 30 of which cause pain).
And then the psychological effects are that I have energy for only about two hours a day, low ambition, horrible self esteem and confidence issues because I didn’t do anything with my life. I am probably only going to last to my 40s. I am offing myself when this spine pain gets any worse.
Thanks for getting your kid diagnosed early and hopefully sparing her all of this damage. Kids can’t advocate for themselves to get the care and nourishment they need. They are helpless to navigate medical systems and put two and two together to figure out what symptoms might mean. They need someone else to take care of them. And you did that. You are on your kid’s side. She has that going for her. And she won’t feel angry at you.
I will NEVER forgive my parents for letting me go untreated and miss out on normal nutrition and development. I am not angry about the defective genes they reproduced (these genes stop here though, I’m never having a kid). I am not angry about not being able to eat real food. I am not even all that angry about the social isolation and stigma about being a picky eater and high-maintenance weirdo at social bonding activities. But I am so, so angry about losing that window of opportunity to be nourished and cared for as a child so I could have a shot at a normal adulthood. I never had a fucking shot.
Your kid will thank you later for caring for her the way you did.
Real sorry Kevin. Hang tough. Please.