I had an interesting relationship with my dad. He was my little league coach. He was my golfing partner. He called me his little buddy. He was all around just a great, great guy. I was the fourth out of 4 boys and as I look back, by the time my parents got to me (pleading for a girl I’m sure), I feel they checked out of the “parenting” department a bit.
As I got older (I was going to say ‘as I matured’, but who am I kidding?), I realized he had his demons, just as we all do, and he did his absolute best with what he had. Sadly those demons took him away from us when he was only 68.
So cheers to my dad and all the dads out there who are simply doing their best!
Which leads me to an email I received yesterday from a father whose son has had celiac disease since a young age and is now in his 20’s but refuses to take his celiac disease seriously and is paying the price for it. He is asking me for advice. And I am asking you to share yours as well. Here is his email:
I am a father of a 25 year old son who has had a celiac disease diagnosis since he was six. From puberty onwards he has more or less neglected his gluten-free diet and has had problems ever since with his education, having had mental problems like depressed feelings, anxiety, concentration problems and probably brain fog, of which I thought that at least there was a (big) chance that they (and so his complete life) could be positively influenced by him accepting his celiac disease and sticking to a gluten free diet.
In the continuing process of wanting to help him, I have given him your book some years ago because I think it has the exact right tone for people like him and so it might convince him. He didn’t read it though, which I regret very much.
He is not easy in discussions but in the latest serious discussion, he used the argument of getting more abdominal problems while sticking to a diet (he has tried it for some months a couple of years ago) and therefore the strange idea that he might not have celiac disease. I have to say here that at 6 he had both positive serology and a complete villous atrophy. So of course I have try to convince him that it is just a fact. He has celiac disease and it is not going away.
As parents we are quite desperate and even his friends see him in a position now where he makes life very hard for himself and they start to worry about his situation living on its own after a relationship breakup.
It is hard to help someone who sort of refuses it and denies his situation.
Do you have any advice which could make a breakthrough?
There’s an old proverb that says “You can lead a horse to water but you can’t make him drink.” In human terms, this means you’ve presented all of the facts to him, but now it’s in his hands whether he wants to take action to save himself.
I cannot imagine what his body is going through: physically and mentally. Celiac affects all parts of the body and the more he eats gluten and the more damage is done to his intestines, his condition will only worsen. I cannot fully explain why he had stomach discomfort while eating gluten-free. It could be his body adapting. It could be that he wasn’t really eating 100% gluten-free.
But it will take more than a few months eating GF for him to begin to heal. It took me years and it was only when I really changed my way of eating did I begin the healing process.
You are seriously a good man and your son is lucky. If he keeps eating gluten though, his luck may run out.
If anyone out there in celiac land has some input/advice, please share. Thank you.
Dude Note: If you’ve never heard the song Father and Son by Cat Stevens, give it a listen. I used to listen to this song over and over again when I was a kid. For some reason, it just struck a chord with me. And it still does.
My dad had stomach issues his whole life. He blamed drug use in the 70s and called it a day. He spent years with a weird rash from shoulders to butt, huge, painful, liquid filled blisters. May 2009 my dad was diagnosed with cancer. Leiomyosarcoma, primary of the lung. He was the 5th reported case ever of Leiomyosarcoma starting in the lung. He died Oct 10, 2009. May till October. Dead. I’ve been unhealthy since childhood. In 2019 I had a itchy, burning, painful rash. My dermatologist took some samples and sent me to see a hematologist to try to uncover why I rash out after UV exposure. The biopsy changed my life. It was dermatitis herpeteformis. My GI thinks I’ve had celiac since childhood. He is also quite sure my dad’s rare and unusual cancer was triggered by untreated celiac. When I was diagnosed I had been given 10 years to live. The disease had attacked so many organs. I had congestive heart failure, pulmonary hypertension, pulmonary fibrosis, asthma, liver disease. Been gluten free since Feb 2019. My last heart and lung scans show NO EVIDENCE of disease. I went from literally planning my last years to having hope and a future. Please, if you’re reading this and have celiac and still eat gluten. Today is the day. Please don’t force your family to bury you.
Powerful, powerful stuff Lori. Thank you. And my condolences.
This made me cry…. I feel so bad for people who have to go through this and it frustrates the hell out of me- and Dude, you are so right… the proverbial “horse to water” problem and denial – are very strong human emotions.. especially denial. My heart aches for that dad and the battle with his son.. and dare I say he is part of the problem without meaning to be? He is in a tug of war- his son sees it as a power struggle and dad sees it as “helping his son”. Dad, you did your job, you cannot do any more. It’s horrible for a parent to sit there and watch a child self-destruct but that’s what you must do. Like watching a child on drugs, or any other addictive behavior is awful and, at 25, he is an adult and responsible for his choices. He could end up with several cancers of the digestive tract or even lymphomas and that is a cross he will have to bear himself. Actions have consequences. You did the right thing when he was 6. He is still 6- in many ways and still resentful, angry and hurting. Other than being there for him when he hits bottom, I am not sure what else you can do.
My dad died of Leiomyosarcoma in 1996, April to August. It was in his abdomen. I have never heard anyone else talk about having it. HUGS to you.
My husband has Celiac Disease and we follow a strict GF diet. Take Care.
Hello – I am the parent of a teen with Celiac Disease. My daughter is actually a cancer survivor. Her Celiac Disease and Type 1 Diabetes diagnoses came along after having had one year of chemotherapy when she was 5 years old. My daughter struggles everyday with trying to keep a positive attitude regarding her many chronic illnesses. I know this might sound strange, but I have found the best support and guidance through Al-Anon Family Support Groups. I originally started going to the groups because of my dad’s drinking. Al-Anon has gotten me through all of my daughter’s medical issues. The 12 steps have helped me so much when I have felt helpless with my daughter’s diagnoses. You can join Al-Anon if you feel that someone else’s addiction (eating gluten) is affecting your life. I think you qualify! There are so many wonderful people in these groups who know what it feels like to have your child heading towards rock bottom. I am so sorry you are going through this. Sending you much peace and clarity as you continue to help your son on this very difficult path.
this is a wonderful suggestion and I hope he and others realize it and do it
I strongly suggest that the concerned dad ask his son to read some of the replies because sometimes it takes someone who isn’t a parent to get through to a child of any age. For the stomach hurting when eating GF, it’s possible he has developed a food intolerance to something that’s more commonly found in GF replacement foods like brown rice (it gives me severe stomach pain). As for the rest, depression and fatigue from celiac can make the work it takes to initially go GF overwhelming. It’s hard enough to get daily tasks done, and adding something like that in is asking a lot when you can barely function as it is. He may need extra help and support to get started.
One thing to think about is he probably doesn’t even realize how bad he feels because this is his normal. It’s how he’s been for half of his life, and I imagine he has no idea how much better he’d feel off gluten, so there’s no incentive for him to get off of it. My daughter’s chronic illnesses started when she was a teen, and she told one doctor a few years ago that she was doing well. I had to tell the doctor that her perspective was skewed and listed what she wasn’t able to do that most young people can, so he would realize she wasn’t doing well – just better than the previous months. As for me, I knew I had the brain fog, and I knew I was tired, but I thought the fatigue and wanting to be left alone was due to having four young children who needed me a lot. I had no idea why I was having anxiety and didn’t realize it was as bad as it was. All of it had crept in slowly enough over the years that I didn’t notice the slide down. It was only after I felt better that I realized how bad off I had gotten. And it’s good incentive to never, ever, ever go back to that place again.
One last thing, this young man may have been expecting to feel good immediately when he went gf for a few months and got discouraged when it didn’t happen. Unfortunately, some people need a lot longer to feel a difference. It took me 9 months off gluten for my bad brain fog, depression, anxiety, and nerve problems to lift. My gut problems were mostly due to food intolerances, so I’m glad I also went low FODMAP when I went gf because I was able to make progress fairly quickly in my gut problems at least.
I remember a similar letter from a son who wanted advice about his father who refused to eat gluten free. Please link that blog post of yours. The comments were very powerful & I think would help.
ok I found it https://glutendude.com/cant-stop-eating-gluten/
Thanks Louise!
If circumstances allow, maybe a visit to a doctor and start the celiac testing over again. Perhaps that would convince the son that he does in fact have celiac. It’s hard when you are in the middle of a health issue to reach out and seek help. And undoubtedly the brain fog is a huge contributing factor. Good luck to them both
I don’t know if this will help your son, but I had terrible symptoms when I first removed gluten from my diet. I felt like I’d been poisoned. My stomach hurt, my digestion always felt “off”, I felt feverish, and had to spend most of a week in bed with painful headaches. I contacted a Naturopath who recommended probiotics, and those seemed to help me during the transition. Any abrupt change in diet can trigger a die-off of bacteria in the gut, and this seems to affect individuals differently. It’s a huge adjustment. In my case, had I not had the definitive biopsy to fall back on, I would have thought going gluten free was actually worse for my body. I feel better now, and I never cheat, but it really, truly sucks when you have to change your diet for life, you don’t want to, AND you feel worse when you go ahead and do it!
There could be many reasons why eating gluten free can lead to stomach discomfort. First, he could have gallstones. This is often overlooked, especially in young men. The typical gallstone patient is a middle aged woman. But when you go gluten free, you increase your fat intake unless you do it via the Paleo direction, then add back starchy foods carefully. Most gluten free baked goods are amazingly high in fat compared to their wheaty equivalents and this can cause a physical pain sensation if a person’s body is having any kind of gallbladder problem.
I actually didn’t realize how much fat there is in GF baked goods until I started looking at the extreme low fat diets (Esselstyn, Ornish, McDougall, Pritikin…) and for reasons of kidney trouble tried them. I tried to make GF baked goods with applesauce to replace the fat. Doesn’t work.
Another way high fat can sneak in and cause pain is if he decided that was the time to try keto. I don’t say that keto is bad. I wouldn’t say that. People should eat the diet they need to feel good. And we’re all different. But keto would definitely make the gallbladder react strongly and if there’s any spasms or stones involved, that will hurt.
Another thing is, a large number of GF products have GF certification but aren’t Organic. Most people think Organic is all about GMO. But that’s shorthand for the agricultural debate going on. Limiting your diet to Organic plus Certified GF is nearly impossible. I’m attempting to do that right now and have been attempting it for years. I do my best. But glyphosate can cause serious harm and so can Bt toxin which is right in the food itself. If, for example, he was eating Barilla corn + rice pasta which is not organic, then he was getting a dose of Bt toxin every time he did that, not to mention possibly also glyphosate residue. Bt is known to irritate the gut lining.
A lot of his refusal to comply with the diet is probably down to just being angry and frustrated by being so different and having to carefully navigate around so many pitfalls. It’s a PITA and you should never underestimate the famed “work avoidance gene” that many males have. 🙂 Simplifying your life and removing hassles is a basic human drive, yet Celiac is a huge hassle.
I also want to reply to “at 6 he had both positive serology and a complete villous atrophy”
Well, technically there is one more thing you could do. You could get a 23andme or other DNA test and see if he has HLA-DQ2.5 or DQ8, which are the two genes that, if you have them, then you carry a lifelong risk of having them activate. Once activated, the T cells forever change and never change back. I hope there is a researcher out there who is looking for a way to change them back, but I haven’t heard of it yet. If it turns out he doesn’t have the genes then his villi atrophy was due to something else and he was misdiagnosed. If he wants to be sure that’s how to find out.
There are a bunch of virulence genes for Celiac that make symptoms worse, but they’re “experimental.” I have only DQ8 and a few of the virulence genes, and if I have even slightly contaminated food or even a supplement, the sensations I have are severe and include brain issues.
You should look at what happens in places where people can’t stay away from gluten, such as Northern Africa where the rate of Celiac is the highest in the world but gluten free food is almost nonexistent. Internal bleeding is not unheard of. But it usually starts with severe anemia and exhaustion.
I would suggest he start with a Paleo style diet (but with fat trimmed from meat, because the gallbladder may be hurting him) and either sweet or white potato as the only starch. Slices of apple make a good substitute for bread at meals. However, at first, he should not do that. There are starches called FODMAPs, and when I’m glutened I can’t tolerate them. Apple is high in these medium size starches that feed the gut bacteria. Wait two weeks before adding FODMAP rich foods to the diet. That means no garlic or onions either, that will be the hard part.
I eat all my food fully cooked, no rare steaks. I eat with all the precautions of a pregnant woman because I don’t trust my gut bacteria to be disturbed and just rebalance, like a normal gut does. There’s a world of delicious riffs on beef stew out there. One of my favorites is a pho style ramen soup that starts with short ribs to make the stock. It’s umami heaven.
After many years I can now eat beans again. And apples and onions and all that delicious stuff. It took a while though. I still can’t tolerate most probiotics.
All diet change is a risk, a big risk. Some discomfort is normal, but not so much that it keeps you home from work or something that severe.
I occurred to me later, another reason why a person eating GF food but not being careful about the quality of it, might be feeling ill? Because rice is a main ingredient in most of it and rice collects minerals from the soil, including arsenic. Arsenic based pesticides were used for decades on rice fields. Those same fields still grow rice. The rice still picks up the arsenic from the soil. Plus some areas have soil naturally high in arsenic. That’s another reason why people just naturally feel good going Paleo, and they think it’s “all grains are bad.” When it’s really jut that they’re avoiding gluten, and that means, they’re eating more rice, and therefore, they’re getting more arsenic. I think CA has strict controls on arsenic in rice and not much historical use or the pesticide, so find out where your rice is coming from.
I used to work with two Long Term Care home residents that had Celiac Disease. The younger resident stuck to as strict a gluten free diet as he could in Long Term Care (let’s face it, he was at the mercy of people serving his food and these people were not always “on the ball” in terms of providing him with safe gluten free foods. The older resident and his family had Management (Director of Care, Dietary Manager, etc) persuaded that, “a little bit of gluten, now and then, won’t cause any damage”. This older resident and his family were sorely mistaken.
Because this older resident had manipulated Management into believing that gluten exposure was safe, this “a little bit of gluten, now and then” turned into copious amounts of gluten at every meal and snack time. And when we PSWs needed to assist him into bed after meals, he would complain that we were “hurting” him. After he had eaten foods that he knew made him sick. Because of his poor choices and adamant refusal to adhere to a gluten free diet, he became so sick that he needed to go to the Hospital to see what was making him feel so poorly. But because he manipulated everyone into thinking that his actions didn’t have consequences, he ended up bleeding out during the diagnostic procedure (from all of the gluten he decided that, come Hell or high blood pressure, he needed to eat).
Not sure if the dad wants to read this comment and show it to his non-compliant son. But, we have to remember that, his son is now an adult and has the right to make his own decisions. But this son also has to take responsibility for his poor decision-making and suffer the consequences when he decides that he wants to eat something that he knows will make him sick.
Tough read Christine…but very important. Thanks for sharing.