My Dad Has Cd, But Won't Go Gluten Free

[Amanda76]

He recently had gone through a barage of medical procedures and tests, and when I asked what's causing all these problems he told me that he was diagnosed with celiac disease...... 10 YRS ago! Most of the problems he's experiencing are a result of continuing to eat foods that contain gluten. (DUH! Quit eating it then!) He says he tried it but it was too much of a pain to stick with. He's a runner, and eats lots of bread and pasta, especially when training for marathons and such.

Well, now he's having liver issues, Vit K deficiency, anemia, just to name a few. He recently had to have an IV of iron, he's taking vit K to get his blood just right so they can do a biopsy of his liver. (And all that is supposed to be easier than just going gluten free? PUH-LEEZ!)

I'm learning a thing or two about the gluten-free diet, as I'm suspecting my son may have celiac disease and we're waiting for bloodwork and an appointment with the pediatric GI doctor. I've told him that it's so important that he gives the gluten-free diet another shot. It's not that hard, instead of buying regular spaghetti or macaroni, buy the gluten free stuff. The same goes for bread, crackers, cookies, etc. Sure it may be more expensive, but it's gotta be cheaper than all those medical procedures he's having to endure!

What can I do to help him? I worry about his health now. I didn't know he had celiac disease until just a couple of months ago. What other health issues might he face if he refuses to stick to a gluten-free diet?

[Guest nini]

He faces CANCER, bone loss, severe neurological disorders, seizures, anemia and a host of other health problems.

If he has Celiac, he is being irresponsible and foolish by not adhering to the diet. This is cutting his expected lifespan by many years if he continues to eat gluten containing foods. He's being stubborn and if his Dr's can't get through to him, maybe you can send him to this site and he can get educated.

I wish you the best.

[Canadian Karen]

Google up "Refractory Celiac Sprue", print out an article about it and show it to him. It should hit home to him how serious this disease can be...... It is never too late to start gluten-free. My family dr. just told me last month that she just had a patient who is in her 80's just diagnosed with celiac.....

Karen

[KaitiUSA]

Not much you can do but present him with the facts. Not following the diet takes an average of 10 years off of your life, 40-100 times more likely to develop cancer and other life threatening and disabling things. If thats not enough to scare him then I do not know what will.

You can lead a horse to water but you can't make him drink. I know it's really tough to see people just ignore what you tell them and act like it's no big deal-I deal with that alot and it annoys me but what can you do you know.

Send him to this site, print him out some articles about what not following the diet does and pray..thats all you can really do.

He really doesn't need testing done to see whats wrong..all the doctor should know is he has celiac and is not following the diet and there is your answer of whats the source of problems.

[ianm]

I don't see how going to the doctor all of the time is easier than changing your diet. I am still trying to get my dad to go gluten-free but he doesn't seem too interested even with my brother finally jumping on the gluten-free bandwagon and seeing good results. Dietary habits and prejudices are hard to change for most people.

[drewsant]

I'm going to play devil's advocate here for a few minutes.

Well, now he's having liver issues, Vit K deficiency, anemia, just to name a few. He recently had to have an IV of iron, he's taking vit K to get his blood just right so they can do a biopsy of his liver. (And all that is supposed to be easier than just going gluten free? PUH-LEEZ

Well, have YOU gone totally gluten free? I'm disabled and have had almost every procedure, test done under the sun. I can tell you, yes doing those tests IS easier than totally changing your lifestyle.

It's not that hard, instead of buying regular spaghetti or macaroni, buy the gluten free stuff. The same goes for bread, crackers, cookies, etc. Sure it may be more expensive, but it's gotta be cheaper than all those medical procedures he's having to endure!

It's not that easy. You have to read every single label on every single box you come in contact with. Go to the grocery store and pick up 15 random things and read the labels. See modified food starch? can't have it. See malt flavoring? can't have it. It's not just replacing pasta and bread.

...... It is never too late to start gluten-free. My family dr. just told me last month that she just had a patient who is in her 80's just diagnosed with celiac.....

So the statements that have been made that it knocks 10 years off your life--sounds like this lady has lived a pretty long life up to this point? I liken that to my grandpa getting lung cancer in his 70's, and people telling him to quit smoking. Why, at that point would he?

I'm in my 30's. What if I had not gone to the doctor and it wasn't suggested to me to try a gluten-free diet? I'd be none the wiser, and I'd still be having diarrhea, but I've been having it for the last 30 some-odd years, and have learned to live with it.

I was talking to my doctor, and telling him how unsupportive my mother has been. She compared the diet to her "diabetic" diet she has to be on. She thinks it's the same thing. NOT! It isn't that simple, and it is really hard to change your mind set, even when you want to. He told me that a gluten-free diet is the most restrictive, difficult diet to be on, so did the dietician I saw.

I can totally see why people don't want to try it. And for people who don't have to be on the diet to sit there and say "it's not that hard, DUH!" --I say, go grocery shopping and read every single label, then see what you come home with, and how much more money you spend because you had to buy a 6.00 loaf of bread, and 3.50 package of pasta.

I guess I feel like it is up to each individual to make the decision to do it. If they don't, then they don't. You can't make someone do something they are unwilling to do.

[Carriefaith]

The decision is ultimatley up to him, but you can present him with all the facts and send him to this site for help and let him make up his mind.

Here are some links:

Open Original Shared Link

Open Original Shared Link scroll down

Open Original Shared Link

If he decides to go on the diet, he will need lots of help. The diet is hard and challenging at first, but once you know what you can have, shopping and meals are much quicker. The best thing to do is have a list of gluten free products and mainstream gluten free products and just eat those.

He's a runner, and eats lots of bread and pasta, especially when training for marathons and such.

Tinkyada makes really great rice noodles that are just like wheat pasta. Some people can't tell the difference Open Original Shared Link

[nikki-uk]

I think Drewsant has made some very valid points.

Gluten is so entwined in modern day living,how can something everyone eats be bad for you?

It's a tricky one to get your head round.

My husband was dx 1 year ago.It's only recently that he's come out of denial,after finally seeing a slow but steady improvement in his health.

We've had some big rows about him wanting to fall off the gluten-free wagon.

However,I only had to remind him just how ill he was before dx-and he owes it not only to himself,but to me and the kids to stay healthy-we have a vested interest in his wellbeing.

By the time he was diagnosed he was bedridden,hospitalised,seriously underweight and 'knocking at heavens door'-Literally.

Maybe it's having such a close shave that keeps him from straying off gluten-free.

I have eventually gone gluten-free with my hubbie-to show my support,and to say'well if I can do it,so can you!'

Try and get involved in your Dad's diet.Invite him round for dinner(gluten-free of course).Try to make something really tasty-a gluten-free diet doesn't have to be bland,just need to be a bit more imaginative.

How about you go food shopping with your Dad-keep abreast of the latest gluten-free products coming out-try some yourself to find out whats good and what isn't.

Have you got any siblings who can support and share your campaign to get your Dad back on the gluten-free diet?

I'm quite sure if my husband had been a single man,he would not have had the focus to stay on the diet.Not that I'm saying it's all down to me,but I given him 100%support,and I'm the irritating voice of reason who reminds himwhat will happenif he does fall off the wagon .

Your Dad's lucky to have a daughter that cares so much about him-if you took the trouble to post your dilemma on a coeliac board then you're obviously quite concerned.

Good Luck!

[tarnalberry]

It's not that easy. You have to read every single label on every single box you come in contact with. Go to the grocery store and pick up 15 random things and read the labels. See modified food starch? can't have it. See malt flavoring? can't have it. It's not just replacing pasta and bread.

It's not that hard either. Reading labels isn't that hard - and if you have to carry around a piece of paper that lists the things to avoid, you carry around a piece of paper. Not to mention, you don't need a single pre-processed, multiple-ingredient, boxed or shrink-wrapped item of food in your diet in order to have a tasty, well-rounded, nutritious, and even gourmet diet!

I do agree, however, that it's very hard if you expect to keep eating exactly the same foods that everyone else in this country eats in it's wheat-overloaded diet. And I agree that it can be very hard to get started and make the mental shift that is required in order to keep the diet from being hard. Basically, whether it's hard to eat gluten-free is a choice each person has to make.

And, modified food starch isn't necessarily right out, you just have to call on it. It is often made from corn.

I was talking to my doctor, and telling him how unsupportive my mother has been. She compared the diet to her "diabetic" diet she has to be on. She thinks it's the same thing. NOT! It isn't that simple, and it is really hard to change your mind set, even when you want to. He told me that a gluten-free diet is the most restrictive, difficult diet to be on, so did the dietician I saw.

It is frustrating when people play the "I know exactly what you mean" game (when they don't), or even the "one up" game. That will be a difficult part of the diet until we learn to accept their attitude without letting it affect us. But it being the hardest diet? Not really. Personally, I find eliminating dairy to be much harder than eliminating gluten. The low-oxalate diet is even harder than those two together. And those with multiple food allergies who have to avoid gluten, dairy, soy, and eggs... and so on (there are a number of them on the board), have even more trouble. But it doesn't much matter how difficult something is if you choose to set your mind to it.

I can totally see why people don't want to try it. And for people who don't have to be on the diet to sit there and say "it's not that hard, DUH!" --I say, go grocery shopping and read every single label, then see what you come home with, and how much more money you spend because you had to buy a 6.00 loaf of bread, and 3.50 package of pasta.

I have done it for two years and think it's not that hard. But I was willing to forgo the packaged, pre-processed stuff, and that choice made it much easier. I also opted to not purchase the expensive substitutions when there were cheaper alternatives (rice over pasta, tortillas over bread). Again, another choice in how you go about the diet.

I guess I feel like it is up to each individual to make the decision to do it. If they don't, then they don't. You can't make someone do something they are unwilling to do.

This one, I whole heartedly AGREE with. We have to each make the choice to follow the diet on our own - and we recommit to that choice every time we eat, really. But we can make the choice either way for ourselves, though either decision may hurt friends and family.

[drewsant]

And, modified food starch isn't necessarily right out, you just have to call on it. It is often made from corn.

Well, as has been stated on this board, if it isn't labeled as corn, then you have to assume it's wheat, and 90% of labels don't specify what the food starch is derived from. So, I assume most of it is wheat, and stay away from it. It's easier for me that way.

I have done it for two years and think it's not that hard. But I was willing to forgo the packaged, pre-processed stuff, and that choice made it much easier. I also opted to not purchase the expensive substitutions when there were cheaper alternatives (rice over pasta, tortillas over bread). Again, another choice in how you go about the diet.

That's great that it's so easy for you. I've been on it a little over 2 Months. I still can't get my mind around the fact that I need to carry my own food wherever I go. I'm still adjusting. I've been willing to forgo most prepackaged foods--but I don't necessarily have to like it, and it makes my life a little more difficult. I have bought the pasta, because I like pasta and it is very convenient. I'm single, and work full time, and go to school, and volunteer, so I need things that are easy and fast. I know people are going to say carrying fruit is easy. Maybe it is for a lot of people, but I'm physically disabled, and it is difficult enough for me to carry a purse with medical supplies I need every day, let alone extra food.

I guess there is always someone who has it worse, but sometimes I don't think in terms of it being better off or worse off, it's just different for everybody, depending on their situation, lifestyle, etc. The gluten-free diet may not be restrictive and difficult for you and your situation, but for someone else, it can be very restrictive. At least until they can completely change around their life style.

Maybe in 2 years I won't see it as being that difficult. But right now, I can definitely sympathize with the original posters father, because I'm so new to this.

[tarnalberry]

...

Maybe it is for a lot of people, but I'm physically disabled, and it is difficult enough for me to carry a purse with medical supplies I need every day, let alone extra food.

...

The gluten-free diet may not be restrictive and difficult for you and your situation, but for someone else, it can be very restrictive. At least until they can completely change around their life style. 

Maybe in 2 years I won't see it as being that difficult. But right now, I can definitely sympathize with the original posters father, because I'm so new to this.

<{POST_SNAPBACK}>

On the second point first: I think that's the key - giving it time to learn the adjustment. Just because it sucks now doesn't mean that it will suck a year from now. True, it doesn't really change the situation at the moment, but it's at least better than it could be. I've found, though, even after two years, that my attitude about it affects how bad it is. Right before the holidays, when I had work parties and co-workers' parties to go to, I got really tired of "can I check the label on that" or "oops, someone put their cracker in the hummus" or "we can't guarantee any of this food is safe". It got me really down and angry to have to deal with this all the time without a break. But once I started focusing on the parts of the event that were outside of the food and let go of that part, it was a bit easier. Not "easy", but "easier".

On the first point: If fruit is too bulky/difficult to carry, what about a food bar (I like Organic Food Bars and LaraBars) to help tide you over? Also, flax crackers are flat, light-weight, and very filling. They can fairly easily go into a pocket.

[pixiegirl]

The simple answer is you can't "make him" or even convince him. My mother has celiac disease and only does gluten-free "sometimes" which really means hardly ever..... only when her runs get bad otherwise she's eating anything she wants too.

I've given her the books on Celiac, sent her to web sites, etc. She doesn't want to. So thats that. My mother is a very inteligent woman and it shocks me how dumb she is on this issue but thats her choice.

I've given up trying, I've begged, lectured, informed, explained and I'm just done with it. She has to run her life how she sees fit. However I'm pretty hard line about it. When she does get the runs and complains about it, I usually cut her off and say, "Mom we know exactly why you have them and exactly how to fix them." and then I move to another subject.

Susan