Folks…going gluten-free is just not that difficult. It really isn’t.
Is it limiting? It can be at times.
Is it isolating? Only if you let it.
Do I enjoy it? Not really.
But is it difficult? No.
Yet over the years, I’ve received a boat load of emails from my fellow celiacs who have a (sister, brother, mother, father, aunt, uncle, second cousin on Trudy’s side of the family, you get the point) who it seems have obvious health issues related to gluten, but absolutely refuse to get tested or give it up on their own.
Here is an email I just received last week…
Alright, so I was diagnosed with Celiac disease a couple of years ago, and it’s been long and painful to make the story short and simple.
My Grandma has been allergic to gluten and dairy and soy for going on 20 years. So it’s obviously in the family line.
Now my Mom has endless medical problems. Rheumatoid arthritis, fibromyalgia, cancer, discomfort with food, unexplained pain, and today I found out she needs more surgeries for carpal tunnel.
My grandma and I keep telling her that she needs to go on a gluten free diet or at least get tested for it, and she’s too freaking hard-headed to even give it a chance. She thinks it’s some weakness or a flimsy excuse I don’t even know.
I need to convince her because she really scares me. I know what it does to me, and I hate to think that she’s just hurting herself.
Please help me know what I should do. I need your help.
Thank you so much.
It’s funny. My response to emails sometimes varies depending on the mood that I’m in. Sometimes I’m “warm and caring Gluten Dude” and at other times I’m “cold and brutally honest Gluten Dude.”
And after a real long summer here at the Dude Ranch, I think you can tell which Gluten Dude is writing this post.
Do I feel for the daughter, who truly cares enough about her mom to reach out to me? Absolutely.
Do I have empathy for the mom, who seems to be her own worst enemy? At 7:04 on this rainy Tuesday morning…eh…not so much.
Going gluten-free is a weakness or an excuse? I don’t think so.
Going gluten-free is a savior to many people; people who have found their health and their lives again.
If you want to bury your head in the sand and live in denial (and in pain), it’s a bad choice, but it’s your life.
But geez Louise…it’s just food!
It could be worse, you could also have diabetes like I do. My sister is the same way with food…I believe she, at the very least, has gluten intolerance. My sister has diabetes as well and refuses to give up her big macs and candies and eats stuff like pizza all the time too. I don’t even talk to her anymore because I’m always the one in the wrong for even suggesting it when she complains about all of her ailments. I gave up on it. People will either come around, or they won’t but it’s not in your control. I still have a hard time with that one but I’m getting better.
People smoke and abuse alcohol. We’re big apes. Try telling someone their GF foods have gluten in them. Then run.
Valid points. I will be sharing this with a family member I’m almost certain has celiac disease!
Please do…
I am dealing with this same issue with my oldest son and new daughter -in-law, He is 21 . She is 18. I have celiac disease . Her mother was recently diagnosed with CD as well. Both of them have a boat load of symptoms that points to them having CD but they refuse to listen, refuse to get tested, refuse to even try going gluten free for a few weeks to see if some their ailments get better.Infact they eat like a couple of 8 years old.. they live on junk food- that is bad enough but with with Celiac in the mix – they are killing themselves slowly. My son’s argument is BUT MOM I CAN’T LIVE WIHOUT BREAD.. My response. “Yeah you can.. and besides you don’t have to. They make gluten free bread ya know.. ” . However there is nothing I can do to make them choose what is best for the health. They are both adults and it is their choice, It’s not mine. As hard as that is to let go, when you know they are hurting themselves.. but you have to let it go. Let them live their own lives. Make their own choices. I can only pray that they will take this seriously before too much damage is done to their bodies. That is really the only advice I can give ..Is to let it go.
I just don’t get it.
I don’t get either especially when it so clear all you have to do is look at our family. There was my mother, who I don’t think had a well day in her entire life- She was always sick, on tons of medications, she was always in pain, always suffering.. She died young . I believe she had CD but was never diagnosed. Then there is my situation. I was sick and getting sicker and sicker for over a decade.. I was going down hill and fast, at one point things got so bad it was obvious I was dying. Nothing got better until I went gluten free. 6 of his 7 siblings are all gluten intolerant.. All of this he has seen first hand with his own eyes but he refuses to accept he might be affected too. I have told him what are the odds that you don’t have CD.. realistically what are the odds? It’s not likely, forget the family history for second and look at your symptoms ..they scream that you have Celiac Disease!” But he is young and stubborn and it falls on deaf ears. Being a young man of 21 years old the thought of him having to give up beer and pizza seems like the end of the world to him. Even though I have assured him that they do make good gluten free beer ( or so I have been told, not being a beer drinker myself) and he can still have pizza- gluten free pizza. He is sick a lot of the time and constantly has stomach trouble but none of this has been enough to convince him.. What’s Mom of a grown man to do?
Yep. It’s just food. And most people either have an addiction to it (gluten has an opiod-like activity in the brain) or a love affair going on with it. Telling some people they can’t eat gluten is like telling a smoker who doesn’t believe the realities of smoking he has to quit. And I know smokers who would rather die than quit. I give my son, who has 6 years left in the Army, all the latest research I can find to no avail. He says Celiac would get him booted out. He’s a CW 3 Chinook pilot. On his 3rd tour now. Not being regular Army, he can’t stay in if he can’t be deployed, so he says. But whatever reason they give, it is their life, and all you can do is give them the info and pray they will take it seriously. I am 62 with some degree of permanent damage because no one knew it was Celiac and so my diagnosis was about 50 years in coming. I wish with all my heart and soul someone would have told my mother when I was a kid “it could be Celiac” but then, she was another who had symptoms herself but refused to believe me when I told her it was the cause of all my sickness. The answer to your readers question, from me, is just give them the research and then back off. That’s about all you can do.
Re: your son. You cannot join the Army if you have celiac (or diabetes, or a host of other GI problems). If you are already in and are diagnosed, it will depend on how long you have been in, your MOS, how dispensible you are, etc., as to whether or not you can stay. It is entirely possible he would be separated if he were to be diagnosed. That is one of those diseases that would render you un-deployable, and especially as a helo pilot, that is not good.
Thanks Kathy. That’s what he said. He has 6 years until retirement. I am praying he will go gf once he retires. He just doesn’t seem to believe how serious it can be, though.
Only 6 years until military retirement is not a ling time, but to wait 6 years to go GF for health reasons is. It really is hard. I feel for you, worrying for him.
Joanne, I can’t imagine how hard that must be and the worry you feel. Awful that his job will be compromised if he is diagnosed and goes GF – not an easy place to be in for him either, I’d imagine. As Kathy said, 6 years to retirement is not an epic amount of time, but waiting for 6 years to take health action is like eons. I’ll also pray that he goes GF as soon as he gets to retirement.
Thanks GFaM.
Is there no way that he can just choose gluten free choices and not let on that he could be CD? Gluten free is actually really easy if you stick to fruit, vegetables, lean meats, nuts, and fish.
its just food. i have lived without wheat, dairy, or soy since I was 5 now im 12. its just food.
My mother only lived to the age of 41. Losing her when I was 14 has affected my whole life. After I was diagnosed celiac (ironically at 41) when I read about the symptoms it really made me wonder if my mother had it.
You can’t nag your mother into being tested. But losing your mother is very hard. Just continually tell her you love her, would not want to live with out her. If there is something that might improve her health and cause her to have a longer life you want that for her. Keep it positive and she might come around.
Thanks for making me see it in another light Gloria.
Some people need to suffer a little more before they consider gluten free as an alternative to pain and medical issues.
I suffered for over 20 years needlessly due to misdiagnosis of Celiac. I was more than ready for an answer to my health issues and was 100% on board for going gluten free once my testing proved positive for CD. But, I’ve seen it many times in my own family (who won’t get tested) who think that going gluten free is truly the end of the world.
My own grandmother who was diagnosed with Celiac fought it very hard. One day she slammed her fists on the counter and screamed “it’s too hard!” because she couldn’t eat a wheat roll with her meal. She had done that for 80 years. How do you get someone to change that habit after so long?
So, you just need to be patient. Remind them gently, encourage them, educate, then you truly do have to let it go.
My brother was diagnosed with Celiac over a year ago and it was then that I really started looking at the symptoms. I had a huge number of them but it still took me a year to finally get tested. I am the first family member to get tested since his diagnosis. I think most people prefer to be in denial which I think I was because I have no excuse for taking so long to get tested. I was diagnosed last month with Celiac. Both my blood test and intestinal biopsy were positive. The doctor who did the endoscopy said by visual inspection he saw lots of flattened villi and was almost positive I had Celiac even before the labs came back.
My sister has UC and has been gluten free since her diagnosis 3 years ago. She can’t eat gluten without feeling sick so we assume she is likely Celiac as well. We have been after our mom to get tested (her mother died of Primary Biliary Cirrhosis which is strongly linked with Celiac). We absolutely cannot talk her into getting tested. She has several symptoms but because she says her stomach doesn’t hurt and she doesn’t have diarrhea she must be fine but all of her children likely have Celiac. She continues to eat gluten though. It is hard to watch sometimes but you can’t force someone to get tested.
This is why more info needs to be out about Celiac. People incorrectly assume that the only symptoms relating to Celiac are gastrointestinal “stomach problems”. So if someone doesn’t have an upset stomach, gas, acid reflux, IBS, etc. they automatically assume that they cannot possibly have Celiac. This is false. There are hundreds of other symptoms that are not gut related. Skin issues, migraines, depression, anxiety, insomnia, muscle aches and pains, osteoperosis, neuropathy, are just some of the other ways gluten can do damage. But people automatically assume that if they don’t have a stomach ache then they are fine. This is the biggest myth I’ve seen regarding Celiac.
I was diagnosed with carpal tunnel and thoracic outlet syndrome…among a host of other things. Both were debilitating for years, they also went away when I stopped eating gluten. My brother was diagnosed with arthritis so bad he was about to have both knees and both hips replaced….at 41. I urged him to go gluten free to see if it might help. Arthritis didn’t make a lot of sense to me but Celiac did. He was very resistant to trying it but eventually did, he said it has made a world of difference for him. He said it’s really amazing the change in his life, I agree it was for mine too. I don’t really understand. Do they realize they are holding onto pain and illness while they desperately clutch that roll??
He’s a smart man for listening to you…
Dude – I gotta say I usually agree with you, but on this one I think you oversimplify a bit. Yes, once you dive in and figure it out, eating GF is really pretty easy. But figuring it out isn’t all that easy. There’s gluten in what?! I have to read the labels every single time I go to the grocery store, because companies constantly change their ingredients? Being faced with that can be daunting. And I think you are forgetting that there are a lot of emotions wrapped up in food. It’s easy to say it is just food, but it’s not. It’s social acceptance, it’s putting yourself out there as different so you stay safe, it’s deciding whether or not to participate in a food related activity or not. Some of us have loving friends and family who simplify this process but others don’t.
Also, I think there is a lot of truth in the saying “you don’t realize how bad you felt until you don’t feel bad anymore.” You have to want to change and you have to see the reason to do it. Our society does not treat food as healing. We treat pills and medical treatments as healing. Those things can’t be applied to those who need to be GF. Getting someone to go against the norm and realize these things is not simple.
So while we sit on the other side, feeling better (most) of the time, it’s easy to forget how we got here. I know at least for me it wasn’t simple and it wasn’t just going GF, it was so much more.
Understood. Believe me, I’ve mentioned plenty how overwhelming it is in the beginning. But as much as it can be a pain in the ass sometimes, eventually it becomes the new normal. People don’t want to believe it can help them.
I felt it needed to be pointed out…….I have been gf almost 10 years so this is second nature and not a big deal to me. The comment about the need to read labels every single time is really not true. With tried and true brands that have been around for a while, you can probably skip the label reading to a couple of times a year. When a company has a successful product, they do not change their ingredients much at all, if ever. They do not want to screw with success.
I have yet, in 10 years of label reading, ever found 1 instance where the food I eat has done an ingredient change on me that I was glutened from. In fact, I have never come across an ingredient change on anything I consume. I will add that I eat brand name foods only and not a hell of a lot of processed stuff but I do consume some. That is not a huge threat, unless you eat only processed foods.
As far as family members are concerned, the hell with them. I have a double DQ-2 gene, it’s on both sides of my family, and I cannot swing a dead cat without hitting a potential Celiac. I am the only one who got tested and no one listens to me. I gave up helping people long ago…not worth it. My parents look horrible, they are both wasting away and have huge symptoms they complain about. Sorry, can’t help ya! You have to give up gluten first and they will not. I just decided to move on with my life and realized everyone has the right to do what they want. I still visit them and love them but won’t hear their complaints. It’s not worth the aggravation.
I’ll add a sad anecdote about diet compliance for CD. A physician treating a couple of people she diagnosed relates that they don’t do the GF diet, and one will eat bread in restaurants. One is asymptomatic and the other has diarrhea. The doc recognizes that she cannot make people do the diet. Kinda like getting them to lose necessary weight. (She shows them how. Those who comply often get scared they got cancer, so powerful is eating right)
It’s biblical, to cast your bread in the river. Some people are receptive.
Having gone through the trying to help folks who I thought might has thyroid dysfunction (as I do), I know that some folks pick up the ball and run when you give them information and some folks just prefer to leave their health totally in the doc’s hands – and if he/she doesn’t mention it, then it can’t be possible.
So I’ve spent a lot of time bashing my head against the proverbial brick wall – and now with my recent celiac disease, I’ve resolved not to do it. At most, I might mention it ONCE to someone – as in “cousin, I’ve read that the RA that you have can sometimes be associated with gluten – and folks have reported elimination of symptoms when they go gluten-free” After that, it’s up to them. If they ask for more info, I’ll knock myself out trying to help of course. And of course I’m always open to Celiac Disease awareness efforts in providing general info if someone asked me about what kind of diet I have to follow, etc.
As for the celiac life being “simple”, I do think it becomes second nature for us – and thus somewhat simple. But it was sort of hard in the beginning – so much to learn. But when you’re sick and desperate, it sure is a lifeline worth grabbing on to if the symptoms fit. I thank God for the person who with one sentence changed my life: “why don’t you try going gluten-free for just a month and see how you feel?”.
My MIL has had the suggestion made by at least 2 doctors to try a GF diet (long-time complaints of GERD, IBS, bloating, asthma-like symptoms). She has asked me numerous times about it (mainly every time another doc suggests it), and I’ve sent her info, FODMAPS suggestions, lists of my favorite foods to make it easier, meal hints….. I get thanked, but then get the litany of how her life is just too stressful to add something else into the mix. I tend to stop listening now when we’re talking on the phone.
My mom used “stress” as an excuse for many things as well. It is what is it is…just an excuse.
What can I say? You can lead a horse to a fence but you can’t make it jump. I used to work in a Nursing Home and we had someone who had a confirmed case of Celiac Disease. No matter how poorly he felt after eating wheat, and he KNEW how sick it made him, he still insisted on eating things he shouldn’t have. Every time I had him as one of my residents and he “cheated”, he’d get irritable and accuse me of hurting him, when I knew his snarky mood was from the wheat. I more or less told him that I wouldn’t take his verbal abuse because he made the decision to eat something that he knew he shouldn’t have. This person eventually died from a GI tract bleed (because of his cheating), and to me, it didn’t come as any surprise.
I feel most people are afraid of the test and more so a result. Men are so stubborn on going to the doctor. No offense GD. My son is probably positive for CD. Knows it but won’t go. A lot of it is out of sight our of mind. If I don’t go get tested I won’t have to deal with it. A lot if it is they aren’t fed up feeling like crap. Like you said dude it’s only food. People are so set in their ways it’s hard to change. Change and the unknown is scary. But driving it into them will only make them dig in their heels IMHO. People can be hard headed.
I’ve mentioned about my sister and mother before. Both of them for certain either have celiac or are gluten intolerant and neither will get tested or try going gf. My mother is so sick from it… it is killing her. For bread… she’s dying for bread. Well guess what, I make delicious gf bread. Not only it’s it better than relay site bought bad, but it’s packed with good seeds and made with milk kefir and ask for about three same price as those fancy site bought beads… about $3.50 a loaf. I tell her I’ll teach her, but she won’t listen or try. My sister too…for noodles. Omg…
Well at least she’s coming around now. Explained to her how she probably had her miscarriage for not being gf (something that can legitimately happen being celiac and eating gluten regularly) abs how it can cause more in the future… for noodles.
I used to be sad, now I’m mad at them for being so stupid. They’re literally being stupid.
Wonder if GD will let you post that recipe! Would love to try it 🙂
Wow, please ignore my bad spelling. Swype on the phones and breastfeeding means bad mistakes…
I next store bought bread… twice haha
I nagged my daughter. She sneaked gluten at school. Now she has Hashimoto’s, another autoimmune disease.
My Mom? Jeez. She has cancer. Lymphoma. Which we all know is associated with untreated celiac disease. Two of her brothers have Celiac. (I am adopted, so no genetic link with me). She refuses to even try gf. Never mind that when she visits me, she feels great until she goes out for dinner with her stupid brother (he eats gf until he feels better and then eats gluten again until he has symptoms, which he calls “a celiac flare”) Then she gets the runs for 2 days. But it’s not the gluten. Nope.
Oh boy…. I am going through a similar situation with my dad. I’ve posted before that I went GF before ever being diagnosed(at the time was only trying to find the cause of my issues and never thought it could be celiac, now I wish I had a definitive diagnosis).
Anyway, I have the DQ8 gene and believe that it is from my dad’s side of the family(Italian). He has had various issues over the years, he had his gallbladder removed back in the 1950’s because of gallstones, and has had reoccurring kidney stones since I can remember. He has chronic constipation, headaches ( I grew up with the smell of bengay in the air – he was always putting it on his forehead). He was diagnosed with a “spastic colon” before they called it IBS and has issues with food “not agreeing” with him. He was always a healthy eater, exercised, didn’t eat fatty or fried foods yet he has high blood pressure and cholesterol and about 8 years ago he ended up in the hospital with coronary issues and had a quadruple by-pass. He also has gout and a whole laundry list of things he can’t eat because of that.
I’ve suspected that celiac may be the root cause, and have asked him to get tested, but he just doesn’t want to hear about it. He loves bread and I think that the prospect of giving up one more thing is just too much. He is in near constant pain because of the way the sternum healed after surgery (the pain didn’t start until 2-3 years after the surgery).
He’s 81 and part of me says leave it alone and just let him be, but he is miserable all of the time. I know he wouldn’t be better overnight but if it is the cause then going GF would possibly help with any inflammation which could help with some of the pain.
My Mom fully supports me in being GF, recognizes that her Mom had misdiagnosed colitis and actually CD. On her own believes her Dad also had it; I’ve secretly believed but not as strong evidence so didn’t say anything.
Can she have CD – in her mind NO. Somehow it magically skipped her to me, and she knows how genes work.
It drives me crazy when she goes on and on about eating whole wheat this and whole wheat that. If I even suggest she completely denies the possibility to the point I’ve stopped even trying.
My brother is a diagnosed celiac, and he is one of those part-time gluten free people. It makes me want to shake him as hard as I can. He says that he’s not symptomatic, so why be gluten free? I’ve sent him the articles, talked to him about the consequences. He doesn’t care. I flat out told him that if he’s going to not eat gluten free, then he needs to stop telling people that he has celiac disease because he’s hurting the rest of the community.
Then we have my mother, who, when I told her about my symptoms said “That sounds familiar.” She also has a slew of other health issues that could very possibly be gluten-related. Will she get tested? No. Will she even try a gluten free diet for a few weeks to see if she feels better? No. But she goes out of her way to help people that she knows are celiac. She makes no sense.
Double sigh…
And please advise your brother to keep his celiac to himself. Just drives me batty.
This is why Celiac isn’t just about changing your diet. Eating and eating socially are basic instincts. The foods around us evolved with the species and are amplified in their desirability now thanks to industrialization. Asking people to change or be isolated is a real big deal.
I agree with this. It isn’t easy to feel as if you are an outcast. And that’s how I feel socially. Not eating gluten containing foods is easy for me. Feeling as if I can enjoy the social aspects of sharing meals with gluten eaters is difficult. And face it. Gathering to enjoy meals together is a human social behavior that we cannot feel free to participate in. For me, that’s the hard part of having this disease. Does it mean I will eat gluten? Never!
My Grandmother had lots of trouble with food allergies all her life. I was diagnosed CD long after her passing. However, my mother has experienced similar food issues as well. As for me, turning 50 and finding out you’ve had CD all these years, stinks! I remember being sick as early as 18. I have fourteen younger siblings. Several have symptoms. One brother lost an extreme amount of weight and suffers from unexplained diarrhea. At least three of my sibs should be tested immediately. Their reaction to my suggestion is unpleasant to say the least. Everyone thinks I should just suck it up and quit being a baby. Really! They don’t believe me, even my CD diagnosis, and no matter how much I educate, they think I’m just one of those GF fanatics trying to lose weight. Or that I’m looking for attention, seriously! I tell them I was diagnosed with a biopsy, etc. So I walk away and focus on my healing. What else can you do? I am sure one of my 44 nieces/nephews will be challenged with celiac. Perhaps then someone will wake up and smell the coffee! This is serious stuff, auto immune is not a laughing matter.
I think where I made the mistake with my mom was when I said it was gene passed. Her mother and her siblings all have and had stomach I issues. My grandmother had ulcerative colitis. So I feel like she thought she gave it to me and didn’t know how to deal with it. Guilty feelings. But my brother and son both probably have CD. And I fear my new grandson maybe also. My son started showing symptoms about 2 1/2 yrs old. And my grand baby is just 8 months. But he has a lot of trouble with food. Very small for his age. But the docs are not concerned. And I dare not say anything to my son about it. Doesn’t want to hear it. Makes my heart hurt. I will though sooner than later because you them. Can’t help it. Sigh