Celiac disease is serious sh*t. I know that. You know that. You know who doesn’t know that? EVERYONE ELSE. And why?
Because of Jimmy Kimmel, who made gluten-free people look idiotic.
Because of Dr. Oz, who called gluten-free a scam.
Because of the ridiculous Kardashians, who jumped on (and off) the bandwagon.
Because of Jimmy Fallon, who consistently has made us the butt end of his lame jokes.
Because of Party City, who called us gross.
Because of the Today Show, who said celiac is the new “trendy disease.”
Because of Elle Magazine, who said we live in a bubble.
Because of Joy Behar, who called celiac disease a “bunch of baloney”.
(Dude note: The above was a painful walk down memory lane. And I just touched the surface. Sigh.)
And yes, because of the medical community, who continue to under-diagnose and misdiagnose our wonderful little autoimmune disease.
Why do I bring all of this up? Because of an email I received recently from a son whose dad almost died of celiac disease, yet will not stop eating gluten. Here’s the email:
My father was diagnosed with celiac disease in June of 2019, at the age of 60. He was hospitalized in May for severe anemia, and required three blood transfusions to recover. They told us that if he had not had the strength to go to the hospital that day, he would have died. The doctors later found out that it was due to celiac disease. If he followed a gluten-free diet, he would be fine.
However, my father has not been taking this diagnosis seriously. He is the type of person who likes to eat whatever he wants, whenever he wants, and scorns anything that is not traditional food. I have tried to bring him gluten-free snacks and food, take him to gluten-free bakeries, and show as many options as possible. I have talked to him about the potential health implications of ignoring the gluten-free diet, such as cancer or having the severe anemia come back. But he is flippant and says that if the anemia comes back he can just go back to the hospital and have more transfusions.
I don’t know if he has symptoms or how severe they are, but he also has had diabetes and insomnia his whole life, so if he has any digestive issues or weakness he attributes it to those, so he doesn’t realize that celiac could be affecting his life. The other day, he wanted to go to IHOP for an omelette, but ended up ordering pancakes and french toast.
While we were there, I had a serious discussion about him about the implications of not following a gluten-free diet with celiac disease, and he told me he would start taking it seriously. But the following morning, I found biscotti wrappers and an empty cake tin and an empty packet of roti. Last night, I ordered a gluten-free pizza, but he insisted he had to have beer with pizza and went out to get beer, despite my attempts to come with him and find a gluten-free beer. (There weren’t any at the local supermarket and he wouldn’t go anywhere else; I’m also 19 so I can’t buy it for him.)
I believe not liking gluten-free food is a mental thing for him. I think he thinks any specialized diet is weird and that their food is disgusting: for years before this I’ve been vegan, and he always loves the baked goods I make until I tell him it’s vegan, and then his mind immediately flips. Similarly, he hears the word “gluten-free” and immediately assumes in his mind that it’s less than and that it is disgusting, like “oh this is okay, for being gluten-free.” Sometimes I understand it: I try the food he has and I can see that some of it is not the same. But the majority of it is completely a mental thing.
I brought home gluten-free brownies from a bakery and I tried one and they tasted exactly like any other brownie I’ve had in my life, chocolaty and delicious and the texture was the same. However, to him it was awful. It’s just frustrating to me when he can still eat so much food that he loves: he can have steak and potatoes and rice and brownies and muffins, as long as the baked goods are gluten-free, and he can only see the negative aspect of life.
The solution is so simple and his life can stay relatively the same: instead of going to Panera Bread to have coffee and a bear claw, he can go to Organic Bliss and have coffee and a gluten-free pastry. But he doesn’t see it that way.
My question is, is there anything I can do to help convince him to take his disease seriously? Is there even anything else I can do at this point, or should I just leave him be? I don’t live near him, so I can’t monitor what he’s eating: as I’ve said before, even if I did, it wouldn’t help. He actually lives alone, so there’s nobody to check up on him except when I call. When he was hospitalized in May, it was the same day I was flying in to visit him, and if he had not made it to the hospital that day I would have come home and found him dead.
That image has scared me ever since, and when he doesn’t pick up I am so scared that something happened, because I know he leads a lifestyle that could contribute to his death. He doesn’t take his doctors seriously either. I understand that he’s an adult and he can make his own decisions, but as someone who cares about him, it just makes life really hard.
Do I need to just let it go, and when something more serious happens, he can decide whether eating gluten is worth it at that point? But if having a near brush with death doesn’t convince someone to go gluten-free, I don’t know what will. However hard I try, I can’t make the decision for him, and it just makes me sad when I sit across from someone who is eating something that may directly contribute to their death or major health problems in the future. I think over this trip, I’m starting to come to terms with the fact that I’ve tried, and if when I leave he reverts back to eating the way he used to and dies as a result, it won’t be my fault.
Thank you for reading my message. I’m sorry it is so long. Please let me know if you have any advice.
First…you are an amazing son and your dad should thank his lucky stars he has someone who cares for him so much. Perhaps if I cared as much about my dad’s health when he was overindulging, he’d still be here.
As to why he still insists on eating gluten, had he heard of the gluten-free diet before he was diagnosed? Did he think it was just a trend and not to be taken seriously, even if it affects your health? Perhaps he had some bias going into this. Or perhaps he’s just being stubborn and is set in his ways.
Here are some more facts you can try to throw his way:
- Fact: People with celiac disease (who do not eat gluten-free) have twice the death rate of those without the intestinal disorder.
- Fact: People with untreated celiac disease have a moderately increased risk of suicide.
- Fact: Patients with celiac disease are more likely to be afflicted with problems relating to malabsorption, osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders.
- Fact: Untreated celiac disease has been linked an increased risk of certain types of cancer, especially intestinal lymphoma.
Will any of these facts change your dad’s eating habits? I don’t know but I get the sense they won’t.
My suggestion? Show him this blog post. If nothing else, it will show him how far you are willing to go to help him. And if he still doesn’t listen? Leave him be. You’ve done what you can and the rest is on him. If god forbid something does happen to him, it is not your fault.
I wish you both nothing but the best.
GD
If the son wants to give us an idea of where his dad lives geographically, maybe someone near by could mentor him in GF lifestyle. Having someone who walks the road may be helpful. I’ve learned to cook and bake GF to where my mom-GF friends rave about my food. It may be if he eats a meal he likes and doesn’t realize it’s GF, he might start to see it’s not as huge a pain as it first seems. I’m in SE MI, I’m always willing to help people with GF info. I’ve been doing this for over 10 years.
Thanks Lisa. You’re good people.
Hi, it’s me, from the blog post. My dad actually lives in Toledo, OH, so not too far from where you are. If you had any advice that you could give us, that would be great! Do you have a website or something? Also, I’ve tried to give him food without telling him it’s gluten-free, but he also knows that I’m not going to feed him something that’s not gluten-free at this point, so it’s hard to kind of trick him into thinking it’s not. I’m also back from visiting him now, so I’m not sure if he’ll be willing to do anything on his own. I’m still hopeful though. Thank you!
I’m third generation celiac and my Dad and Grandmother refuse to go completely gluten free. I care for their well being so much it’s hard to hear about the pain they suffer when they eat things that are no good for them. I know how hard it can be when you are in the early days of giving up so many foods that were apart of your everyday life, but if you stick with it, the benefits will far outweigh any instant gratification a gluten filled splurge might offer. I think one thing that helped me early on is to think of gluten containing foods as poison. You’d never reach for a treat with a known toxic ingredient in the label , and for us, that’s what gluten is. Don’t give up, keep adding gentle reminders into your conversations with him. If he doesn’t feel well that day, gluten is most likely the culprit. Ultimately the final decision is his so don’t be hard on yourself, but hopefully with your love and support, it will stay on his mind.
First, my heart breaks for this son, who clearly loves and wants to support his dad. Second, I agree that trying to educate the dad about the risks of untreated celiac disease is a good way to help him. Third, it’s clear to me that you are offering the son the kind of support he needs to support his dad.
Respectfully, I do have a problem with the wording of the first fact you offer. Pedantic me takes exception to “People with celiac disease (who do not eat gluten-free) have twice the death rate of those without the intestinal disorder.” Human death rate is 100% and cannot be doubled. If it’s twice the death rate of a particular disease, such as GI cancers, that should be specified. Otherwise, the statement doesn’t make sense. Yes, I am nitpicking. But we need to be very clear lest our arguments be dismissed.
This son deserves a hero award for the love and concern that he has. That said, there is nothing more that he can do, you have given the only advice that makes any sense.
I learned way back before my diagnosis as a general rule in life to only concern myself with my own behavior. This sounds self centered but it isn’t at all, do what you can to help and encourage. Turn that loving spirit towards yourself, make sure that your body is healthy and well. Get tested often as autoimmune diseases run in families. Pay attention to every symptom that you might have. Educate yourself and other family members, not only about Celiac Sprue but many other autoimmune diseases that might be in play.
Knowing is your best chance for yourself and your present and future family. The ways this disrupts your life is mind blowing.
Take good care of yourself son, that is all that you really can control. That mindset can be so freeing.
Hi, it’s me from the blog post. Thank you guys for your kind words. I just got tested for celiac in August and it came out negative; my sister has her next physical coming up so she should be getting tested soon. Thank you again
Please…nitpick away. I should have been more specific. I’ll check the resource again (It was legit).
P.S. I have no plans on dying 😉
Thanks for taking my words in the spirit they were intended and for looking into the resource information. I have no doubt that you would only use legit sources.
As always, I am grateful for your support of the celiac community.
Dude, I hope you live a very long and healthy life. But, to quote my then-teenage son, “Spoiler alert: You are going to die.”
Killjoy (lol).
Here’s more info on the data I mentioned:
“The study was done by two Italian researchers, Giovanni Corrao, a professor of statistics at the University of Milan-Bicocca, and Dr. Gino Roberto Corazza, a gastroenterologist at the University of Pavia. They followed 1,072 patients who were diagnosed with celiac disease between 1962 and 1994 as well as more than 3,000 of their first-degree relatives. They then compared the number of deaths through 1998 with the expected mortality rate of the general population.”
I thought the same thing. Made me chuckle a little.
I have 3 sisters (2 with autoimmune diseases) plus my mother, who also has autoimmune. The odds are 3 of 4 have Celiac disease. I tried monthly for a year to get them to get tested. They REFUSE. They love food too much and they just don’t want to know.
Funny thing is one sister is adamant about telling everyone to get a mammogram to prevent cancer. But she doesn’t care Celiac will lead to it.
My son refused to go gluten free when he moved out of the family home. Why? Because he refused to be that weird one, that goofy guy, that oddball who couldn’t eat or drink anything when he was out with the guys.
His main symptom is migraines and he put up with the migraines for a few years. Then he matured a bit and he found out that his real friends were fine with his food restrictions.
Maybe your letter writer’s dad has some embarrassment or shame going on.
Bless you for letting your dad know he doesn’t have to do this journey alone. I hope someday he listens.
The one other conversation I might try to have regards his diabetes and insomnia. Anyone who’s been around the Celiac block knows that his Celiac could be an underlying cause of both those issues (could, not absolutely is). Might he be more receptive in that case, if treating Celiac meant potentially treating the other two issues as well?
Finally, for you — please consider getting yourself to therapy. I know you know in your head that you’ve done all you can, but I would suggest talking it through in short term therapy. It’s hard not to feel misplaced guilt and to put healthy boundaries in place for ourselves when people we love are self-destructive. Much love and well wishes to you!
Hi, I wrote the letter from the post. Sleeping issues and diabetes have always run in his family, so I’m not sure if he’d be receptive to the idea that celiac disease caused them, but I think it’s definitely worth a shot and I’ll mention it to him next time I’m on the phone with him. It’s also possible that there was undiagnosed celiac in his family though: I know his father died an early death at 62, I think it had to do with heart failure. His insomnia has always been one of the biggest issues in his life, though, so maybe if eating gluten-free could potentially cure his insomnia, he would want to try it.
Thank you for your concern for my mental health. I will definitely see if I can access therapy when I go back to college. It can definitely be a struggle when I try to help him but it just doesn’t seem to succeed. Thank you again for your advice!
Sounds like dad needs to talk to a professional on a regular basis. The mental aspect of going gluten free is brutal and, for me, triggered a full grieving process. I even cheated often when I was first diagnosed. Then I ended up having polyps and two back-to-back cancer scares that showed me that none of it was worth the pain or risk of getting cancer at 24 years old. I only wish I had the ability to go to therapy and talk to someone about how very real the loss and exclusion and anger and all the emotions were surrounding the loss of gluten from my life. I hope he is able to get the help he needs. I hope the son realizes it’s not as simple as “just don’t eat it” and his dad is coping in a very macho (but still very much emotionally struggling) way and he needs to see that his dad needs help to accept and deal with this news, not just viewed as stubborn and old.
Hi, it’s me from the letter. Thank you for the input, this is definitely one of the things I was expecting somebody to say and that I wish I had worded differently when I initially wrote the email: I was definitely more than a little frustrated with him at that point, so I wasn’t thinking about how what I said could affect people who also struggled with the transition to being gluten-free. I think that my father is different from a lot of the people who replied with similar stories to yours in that he has had former instances in which he should have changed his diet, in accordance to his diabetes and his weight, and no matter how many doctors would tell him to change his diet, or how often we’d try to help while growing up, he would still rather choose the unhealthier meal over his health. I’m sorry if it sounded insensitive since this is only six months since his celiac diagnosis, but with the way he eats with his other health issues it’s really a lifetime of frustration building up. I definitely think he’s in severe denial and that seeing a professional would help him and I will try to encourage him to seek that option, but he also tends to ignore the advice of professionals and to follow whatever he wants. Maybe going to therapy will help, but I don’t know if he’s the type of person who wants to be helped. I have been trying to support him in that process, which is why I was trying to start small. Many people mentioned that I shouldn’t be bringing him gluten-free treats and desserts because of their high sugar level, and I know the Gluten Dude talks about this in some of his other posts, but I started with that because I wanted to show him he can still enjoy what he loves even without gluten. I tried taking him to his favorite restaurants and encouraging him to eat what he loved and order what he wanted without eating the bread and with requesting the salad without croutons, even if the risk of cross-contamination probably wouldn’t make eating at those places the best idea in the first place. I wanted to start with what I could do to ease a transition, but even those little things seemed to always backfire when it came to my father. I hope this clears up what I said and that I didn’t mean to imply that going gluten-free is easy, I just meant that in my eyes, going gluten-free seems like it would have been a better alternative to going back to that hospital. I’m sorry if I said something insensitive, and thank you for your reply
Dear Really Amazing Son, I think of myself as a sort of a kind of Buddhist and I try to be as kind as possible so please take this on board: we can only do so much and then we don the blue dress and ‘let it go’. You are not responsible for your father’s choices. You have done what you can. You might discuss his will and his wishes for a funeral etc. That way he knows how seriously you are taking his choices. Then, once you have put that part of your common house in order, lovingly let it go. I know how you feel : I have a husband who is smoking and eating himself to an early grave: after multiple attempts at intervention I have accepted that this is his choice and I am now putting our house in order. None of us can carry the responsibility of another person’s choices. But love, and you love deeply, that is obvious, love should and can accept the truth and reality. Once you have accepted him, maybe one day he will accept him. In the meantime, I wish you acceptance, compassion, Loving-kindness and joy in having such a great father, because only a good father can inspire such love.
This is, indeed, a tough one. Normally, it’s the parents worrying about their child so when it’s reversed, that’s even harder. Just like anyone else, all that you can do is keep trying to be the amazing, supportive kid that you are. At some point, your dad will be triggered by something and it will hit him like a ton of bricks. THE most important thing for him to know when he needs you is that you never gave up on him, never tell him “I told you so” and never did anything except try to help him. When that time comes, the only thing you need to say to him is “How can I help?” Love and support always win.
Dear great son, just wanted to share something from a different angle than what’s already been suggested. It may be that this is not a “psychological” issue but rather a neurologic issue. If your dad has had this for so long, as you may know he’s at risk for neurologic problems earlier than he would otherwise be. There’s a phenomenon whereby people truly don’t recognize something that seems obvious to everybody else about their own symptoms. You can see this in other neurologic conditions. It looks like “denial” but it’s more entrenched than that. So it may be that he’s saying all the right things to you but is genuinely unable to take this already daunting task on. This is really, really tough, and the person can look pretty normal in what they’re saying so they may not look like they have dementia or other neurologic problems. So then the only way he’s going to be able to stay gluten free is in a dedicated environment. You might talk to his other doctors and ask them about having him tested by a neuropsychologist. Please see the article Gluten Dude posted about celiac and psychosis — it explains this well. The person just didn’t believe they had the disease.
Wow. Maybe we need an intervention for people in denial of Celiac. Same as is done for anorexic people, or alcoholics?
Diabetes and insomnia can be fueled by Celiac. They’re both possible manifestations of it. The root cause of his health problems may simply be Celiac as it affects other organs.
As far as the lust for pancakes, has he tried the Paleo version of Pamela’s pancake mix? I think it’s far better than that memory foam they sell at IHOP.
And steak (or other meat), potatoes and a side of veggies are gluten free.
He could limit his diet to those things alone, for two weeks and see how he feels then.
Coconut Bliss mint choc-chip non dairy ice cream is divine also.
Who can feel deprived with such abundance?
your dads an idiot. no sugercoating. since he is his own adult, the only thing i can think of is to cloroform him, kidnap him, and force him to go gluten free or starve. (please don’t do that, its illegal.)
another thing you can do is bring a ton of gluten free food, but not tell him that, get him only eating that food if possible, but proboly when he goes to look for it in the store and sees its gluten free, or when he asks you where he can get it. if that doesn’t work, he is a hopeless scumbag making people think celiac isn’t as bad as it is and making it harder for the rest of us.
sorry, but true.
I am 66, recently diagnosed with celiac. I smoke, drink beer, and love all things gluten. I appreciate what this young man is doing, as my wife has done the same. But, that being said, I do not feel that with what is probably my limited time left, I can even begin to do this. My symptoms were minor, loss of appetite, and consequently, weigh, and minor fatigue. I feel that doing this diet the past two months has made me worse. Great guilt at disappointing my wife, but can only hope it will not be too bad. I can sympathize with your Dad, but also know where he is coming from.