Wow. Just wow.
There was an article in the Washington Post the other day written by a mom whose daughter had just been diagnosed with a severe peanut allergy. And because the mom wanted her daughter to be happy for as long as possible, she hid the diagnosis from her for several weeks, allowing her to eat as many peanuts as she wanted during that time.
Incredible, right?
Except it didn’t happen that way. The “healthy” daughter was actually diagnosed with celiac disease and the mom fed her gluten for several weeks because SHE was the one who couldn’t handle the diagnosis.
I’m not looking for anyone to bash the mom on the WP website, but if you’d like to help educate her and others who may be reading the article, here is the link.
The strangest thing about this? She seems proud of herself. Why else would she write an article about it on one of the largest newspapers in the country. Meaning she fully admitted to having a very crappy parenting moment to the entire nation. Who does that? As I was reading the article, I kept waiting for the AHA moment where she has some self-reflection. Nope. Instead, we got these gems:
She was happy, largely asymptomatic and growing like a weed. I worried that the burden of knowing about her condition might do more harm than good.
Dude note: Really? No immediate worries about her insides being attacked by her own body and being ripped apart? Ok then.
My friend casually suggested that I consider cutting gluten from her diet. Normally I would dismiss the idea but I opened my big mouth and raised this topic with my daughter’s endocrinologist a few days later and the whole diagnostic process was set in motion.
Dude note: You consider trying to help your daughter “opening your big mouth”. Hmmm…I consider it…parenting.
It was my daughter’s gastrointestinal system we were talking about, yet it was me that felt punched in the gut.
Dude note: Your 11 year old daughter just got diagnosed with a serious autoimmune disease and all you thought about was how it affected YOU? Mom of the Year you ain’t.
Countless well meaning people tried to console me. I appreciated people’s kindness but the truth was, I didn’t want to deal with it.
Dude note: Ahh…denial. I think they teach that the first week in Parenting 101. I must have missed classes that week.
My husband runs an association of gastroenterologists and I told him, “I want you to search far and wide and find me a doctor who says we can blow this off. Our child is perfectly healthy and asymptomatic.”
Dude note: [mouth wide open…trying to get words out…]
I had no such luck. They told us that while children with Celiac who eat gluten can appear to be fine, doing so continuously can cause damage in the longer-term that has been linked to an increased risk of intestinal cancers, osteoporosis, and infrequently neurological conditions like epilepsy.
Dude note: Yay…she saw the light!
Still, we held off telling her while she was away at sleep-away camp to give her a few more carefree weeks. We told ourselves we’d tell her when she came home and we went on our beach vacation. That didn’t happen. The days flew by and we all indulged in a gluttonous gluten-fest and she never asked about the biopsy results.
Dude note: So much for the light.
Finally, driving home from the beach — several weeks after my husband and I knew about the diagnosis — she finally asked. “Do you really want to know?” I asked her.
Dude note: Are you effing kidding me!? “Do you really want to know?” Does it matter what she wants?? TELL HER. Yes…I was actually screaming at my monitor. And what if she said no? Would you have not told her and kept up the charade?
We agreed to learn about the disease together, gently dip our toe into the Celiac waters and gradually make the switch to a gluten free diet. And that’s what we did.
Dude note: So you “gradually” made the switch to gluten-free? Knowing full well that every bite of gluten was poison to her body? I. Have. No. Words.
So here’s my question to the community. Why? Why would any parent feed their kid gluten after a celiac diagnosis? Is it because gluten-free is a fad (that can’t die soon enough)? Is it because those who eat gluten-free are the butt end of a barrage of jokes on TV? Is it because the conversation seems to be always about the food…and never about the disease? Maybe. Maybe not. Maybe this is actually an amazing mom who just had a 3 week brain fart. Who knows?
All I know is if the diagnosis was cancer, diabetes, a peanut allergy or a laundry list of other diseases, I would assume she would have started the treatment immediately.
But celiac? Nah…we can wait awhile. After all, I need to protect my daughter.
Maybe Mom has undiagnosed celiac. I know I would have been a much better parent had I known sooner. Brain fog can really mess with your reasoning capabilities.
I suppose it’s a possibility…
Think she was to concerned with herself and how her daughter’s condition would effect her lifestyle
Lots of good points, GD. This mother seems to have a lot of fear and baggage, and it’s keeping her from guiding her child in the right direction.
I’d be interested to hear from celiacs or parents of celiacs diagnosed around that age (11).
I know about going GF as an adult, and I’ve heard from parents of young children. But the preteen years have their own unique challenges, and I’m trying to imagine how I would have reacted had I been told at 11.
Nevertheless, gf is not an option, and young people need support to make that change. This mom is modelling fear, avoidance, and ignorance. That’s not going to help her daughter build a strong foundation to manage this disease.
Gf is not necessarily a burden. Undiagnosed celiac absolutely is. Two things make gf manageable: information and perspective. Children need adults to guide them in this.
Perfectly said.
My son was diagnosed when he was 12. I was thrilled to finally have some answers and thrilled to know that his disease only involved a change in diet as opposed to medication or chemo treatments or any host of other things that it takes to treat other diseases. Other people have it so much worse.
We jumped in feet first (after one final last meal at iHop on the way home) and never looked back. It made me sad when he realized that he NEVER felt good his entire life. He always thought that a stomach ache and fuzzy brain was normal! Going gluten-free really wasn’t a big deal for him or our family. We still go out, vacation and do all the things we did before. He just makes different food choices. He still eats ice cream and mild duds with abandon. He is thriving now (grew 7 inches and gained 24 pounds in one year) and knows immediately if there has been a slip up, which sets him back on the couch for 3 days.
I agree. Gluten free is not a burden. It’s just about making smart food choices, which is something that everyone should be doing anyway.
You do know milk duds are made with malted barley??
Not according to Hershey (US): https://www.thehersheycompany.com/our-ingredients/nutrition-information/special-dietary-needs/gluten-Free-products.aspx – signed, another GF Milk Dud fan 😉
I will need to check the ingredients in milk duds, but I think you might mean Maltesers (they definitely have barley malt in them and aren’t GF).
And Whoppers also have barley malt. She might be thinking of those.
Yeah. Whoppers . :’-( Waaaaaaaaah!!!!! I have never had, nor do I intend to have a Milkdud, but I LOVE Whoppers. 🙁
You are thinking of Whoppers ????
-I couldn’t agree more. My son was 8 when he was diagnosed. I went gluten free to support him and found I had a huge sensitivity. It, hands down, was the best thing to happen to our family.
I work with special needs kiddos including 11 year olds. They have many challenges to overcome as they navigate regular classrooms without all of the skills that their peers are born with. I tell them I am their success coach. We are going to be a team to do hard things. This message is what I wish the mom would have said:
This celiac diagnosis is hard. But it is not impossible because we are going to work together. LETS DO THIS!
My son was diagnosed at 13 1/2 and, to be quite honest, I was relieved (he had the disease 10-12 years before being diagnosed)! To know that all we had to do to help him live a happy, healthy life was to omit gluten was a no-brained for us. We told our son immediately when the blood tests came back as well as after the biopsy. As soon as we were given the okay (his GI doctor wanted to wait to get the official diagnosis from the pathologist) to omit gluten, we did it without any hesitation. He has been GF for 2 1/2 years and, while he’s had a couple of sad moments, he’s held a positive attitude. He’s even helped educate his teachers and friends about the disease and what happens if he gets glutened.
Not once have we EVER considered his diagnosis a nuisance or a burden and I think that helps so much with my son’s positive attitude regarding his disease.
Yeah, we all have our sad moments of longing or frustration I’m sure. But overall, treating celiac disease brings so much more health and happiness:)
Kudos for teaching your kiddo to have a positive attitude about this. It’ll come in very handy when he grows up and College/University/work situations happen where he can’t eat what everyone else eats.
My son was 11 when he started having diarrhea after eating while we were on vacation. As far as I knew, he’d been fine before that. Now he has a friend with a severe gluten allergy (touching bread gives him a rash), and it didn’t occur to me that my son might have a gluten issue, even knowing about my son’s friend. However, my cousin’s wife did alert me. So, after the vacation, I took gluten out of his diet as an experiment, and the problem disappeared the next day (sounds unreal, I know, but it’s true). We did have him tested for celiac, and he was negative, and his pediatrician wasn’t terribly helpful. So, we went to an integrative medicine specialist, who did a blood allergy test. Turns out he was very gluten sensitive. When the dr told us to cut out all wheat and dairy, here’s what we did: we went out for one more meal (burgers, his choice), and the very next day we learned how to eat gluten free. Now, it was a process, and it wasn’t easy, but we did it because, well, what else do you do when something is making your kid sick?
I was diagnosed at 6 back in 1998, thankfully 6 months after my mother got her diagnosis so we had a gluten free household. I was extremely good with my diet until highschool; back then doctors knew less than they did now which is saying something so I didn’t learn about any of the internal complications until I landed in hospital during high school. We weren’t even told we needed a follow up or that there was a coeliac society. I was bullied so much for being different, isolated and not invited out because I had to make everything hard, my dates would constantly roll their eyes when I had to order yet another salad and then when it arrived and they’d forgotten to take the croutons off I’d feel so guilty about holding up their dinner date that I’d just eat around them.
Safe to say not knowing did me incredibly harm, I was always moody but had no idea why, I knew it was making me bloated and too much made me nauseous but that was about it. I was diagnosed with depression at 16 and then during year 12 I collapsed at school they did internal tests and I’d destroyed my insides. They aren’t sure if the ulcer was entirely related but I think it is a strong possibility. I was despite being quite rotund malnourished and from that doctor we learnt everything we should have the 11 years previously. From that moment on I wanted to help as many people as possible understand why it isn’t ok to cheat. I think this mother did a great dis-service to her child by allowing the damage to continue to occur, she should have guided them just like our doctor should have guided us back then.
Yes, the scary thing is that all the drive has to come from the 11 year old daughter, because her mother wants to hide her head in the sand.
I’m sorry you had to go through so much! Sometimes I feel like the early 2000s were about as enlightened as I imagine the 1950s must’ve been.
My daughter was diagnosed at the age of 14 with celiac. She was so sick and malnourished that she was actually glad to know she could get better eating gluten free. She is 19 now and she has never been tempted to cheat. She never wants to go back to that place. Any gluten exposure she has experienced since her diagnosis has come by the hands of others!
Think this Mother would receive a grand bollocking from myself (a mother of a coeliac, diagnosed at 5 years old) if I’d of known her. What a self indulgent pile of waa waa.
“What a self indulgent pile of waa waa.” Thanks for the morning giggle. 🙂
🙂
Fairly sure the Mother needs therapy for ego issues.
I have to agree- me thinks maybe the whole family needs therapy to deal with a mom who was so self-indulgent that she thought of her needs first (beach vacation, couldn’t deal with diagnosis), before even educating herself and her child, AND the whole family on their new lifestyle. She was not protecting her child at all, she was subjecting her to abuse. My opinion…
Yup. It made my blood run cold when she bragged about how luckily her daughter is more mature than her.
Nope, what’s actually happened is her child has learned two things: 1) mom is fragile and needs to be protected, and 2) when child needs help and protection the adults will not step up. So the child puts on a brave face and turns her needs inward. And that is a very difficult way to grow up.
Wouldn’t/couldn’t this be considered child endangerment?
I’m with you. Wow. Just Wow.
That was my first thought.
With a dad that is not just a doctor but a gastroenterology association head…absolutely! !!
Mom has some serious criminal issues munchausen being the least.
Catch is, most foster homes aren’t equipped for celiac & too many gastro docs act like this mother did.
☆dude note☆ is there a way to help promote foster kids & those needing adoption with celiac to our community? Got the idea from little people of America adopting those with our needs, to those that already know the drill??
One of my first thoughts was that this woman has Munchhausen’s….
Yes! I know, arm-chair analysis here as well but come on – not only does she continue to harm her daughter but she wants attention for it outside her family. The mom needs serious help and that poor daughter. This is abuse.
I see where you’re going! Her Munchausen’s made her seek a diagnosis for occasional stomach pains (who in the world hasn’t had occasional stomach pains – you don’t go running off for a diagnosis for that in the absence of other symptoms) but then she got the diagnosis of Celiac and decided that didn’t fit into an illness she wanted her daughter to have.
Find a doctor who will give my daughter a different diagnosis because this one isn’t glamorous and doesn’t even have a fancy name like Hashimoto’s!
But she still found a way to find “countless” well-meaning people to console her! 😉
I am wondering why her “healthy, largely asymptomatic, growing like a weed daughter” was going to an endocrinologist. She said “I mentioned it to my daughter’s endocrinologist a few days later”. Maybe daughter isn’t so healthy after all. Mom seems to be in denial all over the place. I just hope the daughter is feeling better.
Probably because “extra”diseases like hashimotos she can take 5 pills for is fine & acceptable to doctors wife with “sick child” but changing families diet to support a celiac daughter is just too hard.
Time to throw that martyr on a fire. Guessing she’s the one that gave daughter celiac & actually believes this is all about her…why else put her narcissism in the news paper? ?
There are several points in the article where the mother alludes to and then promptly dismisses her daughter’s symptoms. Pretty sickening.
Totally f’d up. I’m the father of a daughter with celiac. She was diagnosed at 3.5 years old. She was asymptomatic. I know I wished it weren’t so–a normal reaction–but we started a 100% gluten free home and diet immediately. Did I have doubts about it because she was asymptomatic? Yes. But her damaged villi were not lying. While the changeover is difficult it is reprehensible that a parent would ignore a serious medical diagnosis.
Exactly!!! “Well she doesn’t look sick” ……ummmm yeah….so your perfectly healthy child was seeing multiple doctors, specialist like endocrinologist & gastroenterologist for fun because they were soo healthy & thriving?
If this were a tumor she would already be in handcuffs
I was diagnosed at 21 with Celiacs…two days before Thanksgiving. My parents and my future in-laws kicked into high gear and that Thanksgiving was totally gluten free. Was it the food I wanted? No. Did it taste good? Only the turkey. But you have to start being gluten free immediately and learn from there. I suffered my ENTIRE childhood, I was on my 4th medical record file because the previous 3 files were full! I felt better…not 100%…but so much better, so fast. Now 13 years later, it has gotten easier. I now have 3 kids…who all have diagnosed Cealic Disease (ages 11, 9, & 5). We keep a gluten free house even though my husband is not a Celiac. But because I didn’t live a gluten free lifestyle as a kid, everyday is a new challenge. Is is hard? Yes! But if that poor girl’s mom acts embarrassed by the diagnoses and stays in denial, how is the daughter going to have the right tools and mindset to know it will be ok?
Yeah, I had to shift my expectations about food, and for the first several months didn’t focus on how entertaining or craveable or delicious it was, I just went for nutritious and palatable. Now I’m starting to enjoy cooking again:)
I believe your comment on the fact it is the diet and not the disease is the issue hit the nail on the head. She made a point that they ate tons of gluten. She doesn’t want to have to deal with the diet. I hope she does research on the disease first. I couldn’t imagine watching my child eat something with gluten in it knowing it was slowly killing them.
I tell people everyday to stop apologizing for what I can’t eat. I am healthy! That is what matters. And besides, that big bun on your hamburger looks like rat poison to me. At first I felt deprived, now that doesn’t occur too often. All I can say is education…education…education.
My son was recently diagnosed with celiac just one week before his 11th birthday. I was diagnosed 5 years ago, and had decided to pursue testing for him in part because he’s my son and should therefore be tested, and in part because of his failure to grow.
I had been open and honest with him the whole way (how can you not be, when he’s getting stuck for blood, meeting a new doctor, and then having an endoscopy?) When the results were positive, I shared the news with him immediately. He and I decided together to start the gluten free life the day after his birthday. He wanted one last chance to eat all his favorites, and that’s what we chose.
He has completely embraced being gluten free, and while there has been some sadness about things he’ll never get to enjoy, he’s taught me a lot about being positive and focusing on all the things we can eat. I’m proud of him!
My family’s diagnosis story is similar to yours. I think it must be easier for kids of celiacs to live gfree (and they get diagnosed earlier in life). This is the 1 thing that makes me grateful for my diagnosis. 🙂
He may never get to eat some foods, but I hope he’ll get to enjoy all sorts of good health, and that he’ll appreciate that more and more as he gets older:)
And the mother of the year award goes tooooo…wow!
Living gfree can be an inconvenience, and if you’re not familiar with the pain & other symptoms, it must be easy to blow off. Hopefully the mom in the article gets on board for the sake of her kid’s long term health, and works to accommodate the kid in every day life (like sending a cupcake with her whenever she goes to a birthday party). By the way, I’m an adult celiac with a 14 y/o celiac daughter. I know the struggle!
Did I read that right???? “My husband runs an association of gastroenterologists…” seriously???
Explains a whole lot about what we go through, doesn’t it?
It’s like the Twilight Zone
There were just a few days between my daughter’s biopsy and official diagnosis and our official beginning of life gluten free. Her biopsy was completed on June 25, 2012 and our official beginning of the gluten free diet was July 1, 2012, six days later. The reason for this was to give us some mental preparation. We knew it was inevitable that Celiac would become a part of our lives after the blood test. Her numbers were off the charts. Her Gastro said that he could diagnose her off that but wanted to do the biopsy to see the extent of damage done and biopsy was the gold standard of diagnosis. The four weeks between the blood test at the endocrinologist and the biopsy at the Gastro were spent researching the ins and outs of Celiac and beginning the preparation to live without gluten. I am blessed to have a good friend who had been gluten free for 17 years. She has been an wonderful resource. I had a weak positive blood test so my daughter and I were going gluten free together. It has now been about three and a half years. Gf is a normal way of life for us, so normal in fact, that it is hard to reach back to those emotions surrounding the big change in our lives. Certainly, having to be gluten free is the pits sometimes and it’s frustrating that life isn’t easy as far as food goes, but those tentative emotions of fear and wondering what it will be like are long gone. The mystery is solved. We both feel better and have had positive physical changes as a result. Celiac was holding my daughter back from growing and had given her Asthma. We do have to give her growth hormone shots because her body makes less than 10% of her growth hormones. I blame Celiac for her body’s inability to make enough. It is good to have an answer to the problems that she was having. So many of the issues that I was having and blamed myself for have resolved. I spent so much time bloated and constipated, to be blunt, that I thought it was just the way I was. Efforts to fix that issue never really solved the problem. The only thing that has helped get my plumbing back in working order is being gluten free.
My hope is for the mother who wrote the article for the Washington Post to realize: that her daughter is much more resilient than she realizes; that it is her own fears that are in the way here; that they will survive this; that in a few years those fears will be a distant memory. Given some time, I think this mother will look back at how things went down with the Celiac diagnosis and wonder what she was thinking.
My daughter was 11-and-a-half years old at diagnosis and just turned 15.
Perfectly healthy children do not see endocrinologists. Clearly something was going on. Mom just wanted it to be anything else. Something less inconvenient perhaps.
If the daughter was asymptomatic, why was the mother getting any diagnostics done in the first place????
I didn’t finish my thought before I posted… Obviously if diagnostics were run and the mother was talking with a friend about issues, the daughter was showing signs of something. My blood is boiling at the thought of this mother being so negligent. That poor girl is going to have a much more difficult adjustment simply because of her mother making this big deal out of it.
She is not asymptomatic, she talks about her daughter having stomach pain in the article. What’s worse is her this woman is a former social worker. I wonder if anyone has reported her to CPS yet.
I had the same thought. If the kid had some other serious disease and the mother was bragging about not wanting to deal with it and, therefore, refusing to medically care for her kid, they’d probably be investigating the family for child abuse. We’re talking potential bone loss, neurological problems, higher cancer risk, daily sickness, triggering other autoimmune diseases… among other things. It’s disgusting.
Ugh. why write an article in WP? Is she looking for “oh you did nothing wrong?” Sick incredibly sick.
I have two teenage boys that are diagnosed Celiac and refuse to eat gluten-free strictly. It’s the most aggravating thing I have ever had to endure. I worry about them constantly. I try to educate them. Send them articles. Point out symptoms I’m seeing. Take them to their doctor for lectures. None of it has worked. All I do is worry about them.
You know them best. You must know what pleasures (large or small) can be taken away from them to cause distress. Cause that distress! Then point out that such distress is very minor compared with ignoring one’s chronic illness. In the end, when they mature, they will appreciate it.
I had parenting tricks that worked with my teens. One had the phone taken away. One had keys to the car taken away. I always explained that my job was to keep them alive until they were wise enough and mature enough to choose for themselves.
I’m not a parent of a teenage boy, but punishing them into going gf doesn’t seem like it would make them feel better about the situation. It seems like it would make them feel like failures, and dread gf.
Maybe they need some gf mentors? Maybe an adult they identify with who’s been there, done that, and knows what damage gluten does long-term?
A glutened body is punishment enough, surely.
Teenage boys tend to live in the here and now, crave instant gratification, and feel pretty bulletproof, don’t they? And they’re always hungry to begin with!
Are there any adult celiacs they would listen to about what untreated disease does?
Celiac disease took away my athletic ability, my balance and coordination, my muscle mass, my strong bones, my sex hormones, my early life memories, my healthy nervous system, my fertility, derailed my college years, affected my career path, and drained my finances.
Maybe instead of articles or lectures they need plans for how to make gf choices every day? The logistics of going gf must be tough for a teenage boy.
I might not be the right person to talk to about what untreated Celiac has done to affect my body, since I follow a strict GF diet. But I used to work in a Nursing Home and we had an elderly gentleman that had Celiac. Both he and his family were so dead-set against his eating gluten free food that they said, “A little bit is okay”. “A little bit” turned into full meals laden with gluten filled dishes every day. This person would get so crotchety after eating meals and needed to lay down and sleep after every meal because the non-GF food he ate did so much damage to his digestive tract. I shared some of my favourite GF treats with him (cookies, Glutino Chocolate wafers), but he insisted that he “was fine” after eating things he shouldn’t have. I could tell that he wasn’t fine. So I eventually gave up on trying to advocate for him. I stopped encouraging him to eat GF food. But I also told him not to get grouchy with me because he chose to eat things he shouldn’t and his decision was now coming back to hurt him. This person eventually passed away after developing a severe GI bleed (thanks to all of the non-GF food he ate). A lot of people at work were surprised that this person passed away after developing the complications that he did. Having Celiac myself, I wasn’t the least bit shocked to hear that this person’s poor food choices and the desire to “fit in with everyone else and eat what everyone else eats” had turned around to haunt him. I think your teenie boppers need to know that they’re old enough to make their own decisions, but at the same time, they need to have the maturity to accept the fact that their poor food choices have painful consequences. I agree that punishing them will just make them more rebellious. I would let them make their own choices. When they eat or drink things they know don’t agree with them and they complain that they don’t feel so well, I would tell them that they would start to feel better if they started listening to medical advice and stick to a strict GF diet. You can lead a horse to a fence but you can’t make it jump (a variation on “you can lead a horse to water but you can’t make it drink”)
I think the father needs to rethink HIS occupation. He also may wish to take his pants BACK from his wife.
Exactly!
Telling that she alludes to him maybe quite possibly being a doctor himself and that’s the last we hear of him.
Disgusting, disturbing, and child abuse, period.
If her daughter was having a severe reaction to dairy, would she have continued feeding her buckets of ice cream. I think she missed the Parenting 101 class where you learn that you do what’s in your child’s best interest. A day to buy food? Ok. Add to that a kid who has doctors sticking needles and more into her, and doesn’t ask? Oh yeah, we know about her Mom.
I am absolutely stunned…I have no words…that mother is living in the Land of D’Nile…like so many self-absorbed unaware frightened people with no backbone to make good choices in life. I am trying not to judge this mother for her ignorance, but its hard to think of her as a responsible parent on any level. If she wanted to deny herself the proper care, thats her adult choice, but as a parent, I find it unconscionable to deal with her daughter in this manner. But its not my journey, its theirs…I hope they find their compass!
“Find me a doctor anywhere that will say we can just ignore this…” W.T.H. This mother is beyond words egocentric. I have other words for her but I’ll refrain. Just wow.
In my mind that should have been dad’s last hint to hire a divorce attorney & try to get full custody.
Catch is, why didn’t GI doc dad read her the riot act right there & put a stop to this nonsense? Seems he should have been easily prepared to deal with this diagnosis as soon as it came in
She was obviously not asymptotic if they got to the point of a biopsy being ordered. Why would they even bother to have the biopsy if they weren’t prepared to deal with the results?
The day I was diagnosed, my doctor told me to celebrate. I understood what he meant immediately. I finally knew what the problem was and I had the power to do something about it. Not everyone who is sick can say that.
As someone with celiac myself and a child who I suspect may have gluten issues – but as of yet is undiagnosed because I’m not prepared to do a gluten challenge with him – I sort of understand where this woman is coming from. Sort of. Her comment about wanting her child to be carefree hits home. A lot of good memories for me as a child were attached to food. It was nice not to have to worry about that and be consumed with it like I am now. We all know how big a pain it is for us as adults to deal with celiac. But we’re all big boys and girls and we can handle it. For kids it’s not so easy.
That all being said, I still do not allow my son to eat gluten even without a diagnosis because I don’t want him to have the same health issues I had for years. I don’t want to do permanent damage without knowing it. The memories of food in my childhood are just that. Memories. My life is different now. Things change whether we like it or not. It’s better to adjust and roll with it than to try to anchor ourselves in the past.
This woman has a right to grieve over her daughter’s diagnosis. I do sympathize with her there. But my biggest problem with it is when she asks her daughter if she really wants to know. That’s just a lack of parenting that is all too common these days. It’s not up to the kid. Especially when it comes to a serious health issue. If her husband is a gastroenterologist, I also have a hard time understanding why he went along with not telling her for so long. Either way, this kid showed more grace and maturity about her diagnosis than either of her parents. They could learn a thing or two from her.
The thing is, a sick child is not a carefree child. And children can be adaptable with the right support, so gf becomes a new normal, not a burden.
I’m not saying gf isn’t hard for kids, it must be, but if it spares them health problems, hopefully that’s something adults can help them understand.
I don’t disagree with you. It just seems like this mom is getting run through the ringer here – deservedly so perhaps. I’m just trying to see it from her side. I can’t blame her for doing it a little at a time either. It’s overwhelming and hard to go completely gluten free from the start. It took me about a month before I realized that cross-contamination actually did hurt me and decided to stop testing the waters on that. And I’m pretty hard-core with my diet – now. I would never purposely cheat and don’t eat out very often.
I was sick a lot as a child. A very fussy baby. Had ear infections almost constantly. Wouldn’t eat – to the point where I was hospitalized at about a year old. They thought my mother was starving me. And after a week of tests, all they found was an iron deficiency. Not many doctors knew about celiac in the late 70’s. But in spite of this, I was also carefree because I never knew anything different, so I didn’t think too much about it. Those were just things that happened. This child is likely the same way.
I have the benefit now of looking back on all of it as an adult and realizing that it would have been much better to know then so I could have been healthier. It would also have been much harder because not much gluten free food was commercially available then. At this point my son doesn’t know anything different than to eat this way. For him it is normal and for that I am grateful. But I can’t say that I wouldn’t be relieved to find that he really doesn’t have an issue with it when we eventually do a gluten challenge. But for now – even though we don’t know for sure – I am his biggest advocate. I have fought with my parents and my in-laws about what to feed him. I’ve been told I’m paranoid for worrying about it. But I will stand my ground because his health is too important.
1. Why?
Selfish, lazy, and attention seeking mother who is too self-focused to put forth the effort to actually parent their child. She enjoys the attention SHE gets from having this problem in HER life. Munchausen by proxy.
Parents job description includes, “telling child about serious life threatening illnesses and training them to learn how to LIVE with such diagnosis. NEVER asking a child if they want to live or die!
2. Why would any parent feed their kid gluten after a celiac diagnosis?
Hmmmm, see answer to number one!
3. Is it because gluten-free is a fad (that can’t die soon enough)?
Again, I have to refer back to number 1.
4. Is it because those who eat gluten-free are the butt end of a barrage of jokes on TV?
Once again, in my humble opinion – see answer to number one.
5. Is it because the conversation seems to be always about the food…and never about the disease? Maybe. Maybe not. Maybe this is actually an amazing mom who just had a 3 week brain fart. Who knows?
A three week brain fart. LOL I guess the odor clouded her thinking.
I was diagnosed at 18 mos on my deathbed. I had many family members who had been sick for years with no diagnosis. After my diagnosis they got tested! My mom’s side of the family came back with a celiac diagnosis and my dad’s side came back with a ‘gluten sensitivity’ diagnosis. We all ate gluten free immediately. (This was 34 yrs ago!)
I had so much conflicting information. ‘You’ll grow out of it; celiac disease is permanent’, ‘A little gluten is okay every now and then; No cheating! Even a little can hurt.’ Also, ‘no contamination’, ‘Don’t breastfeed if you have celiac disease, it will pass it on to your children; You should breastfeed if you have celiac disease to prevent/protect your children from getting celiac disease’, ‘Don’t expose your children to any gluten until they are older/school age, it will prevent them getting celiac disease; Early exposure to gluten is better’ etc, etc. Celiac disease is difficult and still new, at least in terms of trying to find out how to best educate us, is my guess. (I was all for bottle feeding as a teen, then I read an article about the benefits of breastfeeding in a Celiac magazine. When I was pregnant with my oldest, the celiac foundation articles were encouraging delayed exposure, but just after she turned 2; and before my younger daughter was turning 1, the foundation released an article in the magazine encouraging early exposure.)
I followed their advice. That is also how I found out my girls have an issue with gluten. I am still fighting with the insurance companies to authorize the genetic testing, as, due to my vigilance with trying to do what is ‘best’ for my children, they do not have the antibodies built-up in their systems, and therefore the test’s can not produce an accurate result unless I expose my children to gluten for an unknown period of time (according to the gastroenterologist, it could take many years now).
The nice thing about being diagnosed now is our food choices have expanded and are still expanding! My girls often ask me if what they are eating is ‘gluten free’.
My “asymptomatic” child said about two weeks after his diagnosis and being on the gluten free diet that he felt so much better.. After he ate he could play where before his stomach would hurt. The child didn’t know the difference from feeling full and feeling sick. He thought the way he felt after eating was normal because its all he knew. Our jobs as parents are to protect, educate and support our children. This is a big deal when kids are diagnosed (I have three children with it) but the parents need to do all they can to make the transition easy… and by transition I mean going entirely gluten free immediately after diagnosis.
When I was in preschool I had depression, lethargy, migraines, edema, pallor, chronic infections, pica, constipation, and nausea. The only way I knew to describe it were “my tummy feels funny.”
I. Am. In. Shock.
Dear Mom,
I hope you read this because I was your daughter. I can’t blame my parents for not exploring the possibility of Celiac because back in 60’s and 70’s doctors didn’t know anything about it. In the medical community it was thought to be something that happened in other countries, but not in the United States. My parents had no awareness of its existence. I don’t think our physicians did either.
I was always a sickly child. I was the classic “failure to thrive” weighing only 60 lbs when I was your daughter’s age. My pediatrician and family doctor chalked it up to my having been a premature infant back before neonatal units existed. It would be pointed out to my mother that it was a miracle I was alive at all. She was told to be thankful I had survived and to expect health problems.
Even though she treated my various symptoms, she never quit suspecting there was something undiagnosed that had nothing to do with being a premature infant. Ultimately she was the target of physician’s eye rolls as being too overprotective. She would be sent home with iron tonics, antibiotics, and directions to up my calories. They told her I must be a “picky eater”. She knew I ate more than her friends’ children.
Sadly the diagnosis of Celiac came after my mother’s death. I have so many times wanted to let her know that her “mother instincts” were correct. I know she would have been my biggest “gluten-free” supporter and also my fiercest advocate had she known. It would have saved me decades of progressively ill health and her decades of worry.
So, Mom…get on your knees and thank God that your beautiful daughter got a diagnosis early. While you are there thank Him that she is still young enough to heal the damage that Celiac Disease has already caused and also be thankful you have the knowledge to prevent further damage. Thank Him that there is finally so much awareness/information now that your daughter will never have this disease take her quality of life, her fertility, her bones, or her mental health. Thank Him that a simple change in diet will give her a healthy future and you the possibility of future grandchildren. Thank Him that she will never be a victim of medical ignorance and grow up thinking pain is “normal”. I am saying an extra prayer that she will not become a victim of your ignorance.
You need to be her biggest supporter, her biggest advocate, and her biggest nightmare if she dares to “cheat” on this diet. You have the information that my mother so desperately wanted. Don’t take that for granted.
It isn’t sad to change her diet. It is sad when not doing so has the ability to take her health, her well-being, and ultimately her life.
Sincerely,
Miss Dee Meanor
Well said. I might add, dear Mom … just so you know, Hashimoto’s has been linked to Celiac. Thank God your daughter won’t have to live a life with thyroid problems and all the body damage that goes with that, because she got her Celiac diagnosis early. That is, if you become an advocate and help her be 100% gluten free.
Early Celiac diagnosis won’t always prevent Hashimotos. My daughter was diagnosed with Celiac at 18 months and has been 100% gf from that point forward. Last spring, at age 15, she was diagnosed with Hashimoto Disease. In her case being gluten free did not change the condition of her thyroid.
I am sorry to hear that. I should have said “often” can stop the autoimmune attack on the thyroid, not it will stop it. Is your daughter tested for the anti-gliadin antibodies regularly?
She was tested more frequently when younger, now every year or so. Her very rare exposures to gluten result in such severe vomiting that she never takes chances with her diet. Now she has monthly blood work done to monitor thyroid function. Thankfully she has a great spirit and full of gratitude that neither of her autoimmune conditions are life threatening when taken care of properly.
Very eloquently stated Miss Dee. Hope this mom sees your words.
Very true.
I was diagnosed as an adult, having left home 18 years previously. It sounds strange, but it seems at times that my diagnosis is all about my stepfather. If I dare to read a label in his presence; or ask about options in a restaurant, or even ask to serve my vegetables from the shared dish before him, I am “making a fuss”. Don’t worry about me, he gets shushed by the rest of my family, who do get it.
In this case, mum might be on board for now (and it took too long), but what happens when mum wants to be in control again? This is a child, who can’t go home/send mum home if it gets impossible. A leopard doesn’t change its spots; and if mum thinks her convenience is more important than a child’s health, at some point I have a feeling that the gluten free diet will just seem like too much trouble.
I had to look up this woman. Here’s from a December WP article:
Susan Stillman lives in suburban D.C. with her husband, four children and dog.
She is a former social worker who now blogs at Let Me Tell You Something…
A former social worker??? Are you kidding me??!? (Maybe there’s a good reason she’s a *former* social worker…..)
Sooooo her husband runs an association of gastroenterologists and he was just fine with his daughter being poisoned for weeks?! He’s obviously an educated individual, someone who likely has knowledge of the disease but went along with her eating gluten post diagnosis. What awesome parents!! Sheesh!
This is so worrisome to me and I hope any parents who have newly diagnosed children will read through Gluten Dude’s blog. Hiding a child’s diagnosis is dangerous and only teaches the child in the future to not take it so seriously. Please do not do this. If unsure get a second opinion, but don’t ignore a diagnosis like celiac disease. I hate to see a child suffer for no reason. The sooner mom comes to terms with it, the closer to a pain free, symptom free life her child will be. Celiacs cannot have ANY gluten.
This is horrifying! Yes, being gluten-free is hard when you first start the necessary diet. The reward is amazing; to feel “well” for the first time you can remember. There are more restaurants with gluten-free options and I’ve got quite the collection of cookbooks that have great recipes. It’s about taking care of your kids that makes you a parent; otherwise you’re just an adult. This woman needs to wake up, suck it up, put on her big girl pants and be a mother to a child with an illness that she has to live with for the rest of her life whether her mother wants to deal with it or not! That’s what parents do…
“Why? Why would any parent feed their kid gluten after a celiac diagnosis?”
Because they think it’s too hard. That they are going to have to eat rabbit food and meat for the rest of their lives.
This is the answer I get from everyone -celiacs-still-eating-gluten included.
That article is madness. It’s like a swan song for clinging to one’s ignorance. Which would be fine if it were her gut that was slowly shutting down and not her dependent child’s.
Yeah, this is a pretty terrible parenting decision – and she still doesn’t get it. “We’ll gradually dip our toes into it” – my god! Didn’t any of the doctors point out that underlying celiac disease may be the reason (or a contributing factor) to the Hashimotos? On top of everything else, it seems that the medical establishment failed to make sure the parents understood the seriousness of a celiac diagnosis.
As for the girl being asymptomatic? Well, I would have said that I was asymptomatic too – until I stopped eating gluten and things that I didn’t even know were symptoms went away. You mean everyone doesn’t have headaches, constant irritability and tiredness, skin rashes, trouble sleeping, etc.? If the daughter has never experienced health, how does she even know if she feels lousy or not?
I have no words. But this certainly did make me cry for all parties.
Just sad and frightening. My son has hemophilia A. At our local Hemophilia chapter we had a teenage patient who only recently began attending education events. His mother refused to get him consistent treatment for his bleeding disorder which is deadly and dangerous. She just didn’t want to deal with the incredible expense and the restrictions of hemophilia on a regular basis. Now this young man has major joint damage at a very young age. The damage is permanent. He is lucky he did not bleed to death. I don’t understand people like this. Reach out people, that’s why there are local chapters and support groups. You don’t have to go it alone.
Hmmm. When the pediatrician called to tell me that mu 3 year old daughter’s blood tests were positive for celiac, I vowed to run out immediately to stock up on GF foods (and in 1991, that would have been no mean feat). Sadly, I had to keep her on a regular diet until we could have the biopsy six weeks later.
People are seriously messed up.
One thing about this that’s been sticking in my mind about this is the girl is eleven…and she already has a Hashimoto’s diagnosis. I had the same condition starting around that age and it is damn grueling and life-altering. But I wasn’t diagnosed until 31 and it took 3!!! endocrinologists to get it right. It took so much life away from me.
On the one hand..it’s good to see a kid getting a timely thyroid diagnosis. On the other, they don’t automatically screen her for celiac! And then her mother is resistant to care. So close, but so far..how many more decades until doctors routinely get it right the first time? It’s not like these are newly-discovered diseases..
I read this story the other day and was completely appalled at how this mother could take her daughters diagnosis so lightly. Then I thought maybe I was overreacting a bit, but no…..this is wrong. Living with a celiac diagnosis is hard, being an adult and dealing with social and business situations is rough. I can not imagine being a child and having to deal with this disease, but we have a responsibility to protect our children, to do the right thing even though it may be tough. Feeding a child with celiac disease gluten, is feeding them poison. Do the right thing, guide them, support them, be there with them through this tough time, help them to be healthy.
Has nobody noticed that the father, who is part of a gastroenterology group of all things, was also complicit in this child abuse?? What the hell is wrong with these two parents? I hope child protective services stepped in to help this child.
I guess I’m the only one who doesn’t thing the mother is a monster.
If the kid is not more symptomatic now than before the diagnosis, there is no urgency to cut gluten right this second, right now, instantly or you’re a horrible child abuser! What *is* important is to get the kid on GF soon in a way that she will stay on it.
I suffered for decades before diagnosis. Two weeks one way or the other would not have made much difference.
If this mother needs a few weeks to get her act together, LET HER! Geez!
And if she doesn’t do anything in a month, then yeah, she has and is a big problem.
I think the biggest issue is the denial, and basically leaving the daughter to take the lead on gf. What would be happened if the daughter never asked? And does the daughter really know what she needs to do?
What a b*tch! What a narcissistic b*tch! You want to give your daughter a day or a week to enjoy her favorite things before cutting them out for life? FINE! But let it be her choice if she wants to eat something one last time in that SHORT, SHORT, VERY VERY SHORT adjustment period.
But if you delay telling her because of how her diagnosis makes you feel, then you’re just being a b*tch. And then you go write an article about it for the Washington Post and prove that this has nothing to do with your daughter.
I do understand the learning curve after diagnosis, but without an “Aha moment” where she understands the seriousness of the diagnosis and how her daughter can live a happy and healthy life with it, her article makes her sound like a bad person.
I think prolonging telling her daughter about the diagnosis and the”do you really want to know?” comment built up a level of unnecessary drama for the daughter. Maybe this woman just had a hard time wrapping her brain around the fact that her daughter was diagnosed with an issue she’d have to cope with for life. We have no idea what other things this family was dealing with.
That said, it seems a no brainier to immediately do what you must to start your loved one on the road to recovery and to protect them from further harm. I would suggest in such a situation that it be approached matter of factorily (is that a word?)and without drama to show the kid that the parent is the rock that will support and guide them as they navigate the challenges.