Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Do I Overcome Bad Advice?


sharps45

Recommended Posts

sharps45 Apprentice

I'm only recently diagnosed, and have spent hours researching this disease. In the course of telling some family members I found out that my nephew, 22, was diagnosed several years ago. His doctor told him that anything he could eat that didn't cause him symptoms was alright. (I also had my first doctor tell me something similar) How do I tactfully tell him that he really needs to get on the diet and stay on it? His mother has a strong personality, and while I love her to death, my getting too adamant could cause some problems in the family. Could someone help me with some facts and statistics that I could use to convince them of the danger? I understand his reluctance to face the truth, as I had very few health symptoms when eating gluten, and had a hard time convincing myself I had to go gluten-free. Please help! thanks


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Give him the book by Dr. Peter Green---he's a leading authority on Celiac. It should hopefully be a kind nudge.

Guest j_mommy

I agree with the book choice!!!

At the same time I would drop a few notes of wisdom and leave it at that, I wouldn't push every time you see him. Some people are in denial and just don't want to follow the diet as it should be followed or only follow it at convient times. Soemtimes we must realize that it is their body and their life.

It is especially hard when it's a family member doing this. My grandmother who is in bad health anyway refuses to do anything. It is very frustrating, but I have choosen to let it go b/c I do want to enjoy our time together and fighting every time we see each other just isn't worth it!

Good Luck!

EBsMom Apprentice
Give him the book by Dr. Peter Green---he's a leading authority on Celiac. It should hopefully be a kind nudge.

That's a great idea! The book really covers it all.

Convincing family members to get tested or take the diet seriously can be really shaky ground. My f-i-l is a walking laundry list of symptoms and associated conditions and he absolutely refuses to consider the fact that he probably has celiac disease. My b-i-l was just diagnosed and he's eating "a little gluten" and thinks that it's okay. I tried to talk to them both, but it was verging on being confrontational. All I can hope now is that I planted a seed, and that they'll eventually figure it out. In the end, it's their call. My f-i-l is about to turn 70, so he's lived a long time with his problem....he's been sick and debilitated for many of those years, though. It's even harder to watch a young person continuing to ingest gluten, knowing what they're probably doing to their bodies.....I hope your nephew figures it out. Good luck!

Rhonda

sparkles Contributor

Your nephew is 22.... seems like IF given some correct information, he might make the right decisions about his diet. Print up a few articles about celiac disease or turn him on to this site. But like everything, some people find it easier to ignore the facts and stay in denial. Let's face it, if we could just eat a "little" gluten, life would seem much less overwhelming at times. All you can do is give him some facts and I think the written word is less confrontational.... Good luck!

sharps45 Apprentice

Thanks everyone for the answers. I don't think the book is the way to go just yet. The articles may be my best opening. Maybe by showing him that I can do it alright may help. I'll let you know. thanks again

Mom23boys Contributor

Solicit his help getting started on this.

Don't direct it like "you need to do this" but "how do I __?".

"My dr said all celiacs must avoid cc . I searched the internet and it was verified at Celiac.com and __ sites. What is the easiest way for you to __?"

"That sandwich looks good. What kind of gluten-free bread do you like best?"


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Centa Newbie

Hello, there

Tell him about this site,

...that there are people his age who are members, some of whom are twenty-somethings with cute avatars :lol:

...that people on this board write from experience about the effects of gluten in their life,

....and what they know from experience makes a difference.

...that he can ask anything he wants on the site, that that's' what everybody else is doing.

kbtoyssni Contributor

I would approach it from a "there has been recent research that shows you do not grow out of the disease and you must stay strictly gluten-free to avoid further complications even if you don't get immediate symptoms from eating small amounts of gluten". 22 years ago it was pretty standard for doctors to say that kids would grow out of it.

Why does his mother need to be involved in this? He's 22 so I would just talk to him. He's old enough to make his own decisions.

sharps45 Apprentice

He lives at the other end of the state, so just getting a face to face will be difficult. I also think that going through the mother would be the best approach. I really think I need to getting her on my side to get him to look at this disease would be the best approach. I really need to get some more information from her (what dr. told him, how he was diagnosed, etc.) before I hand a bunch of ugly statistics to the family. I'm hoping to talk to her tonite, so maybe I'll get back on the board tomorrow and let you all know what went on. thanks again

Gemini Experienced
Your nephew is 22.... seems like IF given some correct information, he might make the right decisions about his diet. Print up a few articles about celiac disease or turn him on to this site. But like everything, some people find it easier to ignore the facts and stay in denial. Let's face it, if we could just eat a "little" gluten, life would seem much less overwhelming at times. All you can do is give him some facts and I think the written word is less confrontational.... Good luck!

My nephew is 25 and I know he has celiac disease also. He always has stomach issues and loves his beer. He also has bad asthma and my family refuses to believe that their breathing problems are connected to gluten. So.....I convinced him to do an experiment, which was to go beer free for 2 weeks and then have one. He did it for me and when he raised the glass after 2 weeks, his chest tightened considerably after 1 sip of the beer. He was convinced BUT he has not reached the point where he can accept this. He thinks he can go gluten light and just has trouble giving up some of his favorite foods. He's a kid so I expected that. I think eventually, when he becomes much sicker, he will be ready to go gluten-free for good but it's hard to watch the damage being done. He was tested recently by his PCP, after telling him about me but I have no idea what tests were run and I have had to drop the enquiries for now. People get awfully pissy when you press the matter. It never fails to amaze me that people cannot connect food to their health problems and think they will die without bread!

JNBunnie1 Community Regular
My nephew is 25 and I know he has celiac disease also. He always has stomach issues and loves his beer. He also has bad asthma and my family refuses to believe that their breathing problems are connected to gluten. So.....I convinced him to do an experiment, which was to go beer free for 2 weeks and then have one. He did it for me and when he raised the glass after 2 weeks, his chest tightened considerably after 1 sip of the beer. He was convinced BUT he has not reached the point where he can accept this. He thinks he can go gluten light and just has trouble giving up some of his favorite foods. He's a kid so I expected that. I think eventually, when he becomes much sicker, he will be ready to go gluten-free for good but it's hard to watch the damage being done. He was tested recently by his PCP, after telling him about me but I have no idea what tests were run and I have had to drop the enquiries for now. People get awfully pissy when you press the matter. It never fails to amaze me that people cannot connect food to their health problems and think they will die without bread!

I think it's a little unfair to say that just because someone is young, then they have a hard time with self-discipline. I figured this out on my own when I was 19 and I've never cheated, and I know a lot of older people that cheat all the time. From a younger person's perspective, it's much easier to be open to what someone has to say to me when they don't have a preconception of my abilities or maturity. It's been my experience that the best way to teach a young person something is to ask them to teach you about it, the way someone else suggested.

Gemini Experienced
I think it's a little unfair to say that just because someone is young, then they have a hard time with self-discipline. I figured this out on my own when I was 19 and I've never cheated, and I know a lot of older people that cheat all the time. From a younger person's perspective, it's much easier to be open to what someone has to say to me when they don't have a preconception of my abilities or maturity. It's been my experience that the best way to teach a young person something is to ask them to teach you about it, the way someone else suggested.

Oh, I don't think it's unfair at all. I never said that all younger people are not disciplined, in fact, I never mentioned the word undisciplined. For younger people, food is a much larger social issue. It's younger people, especially unmarried younger people, that go out more often with their friends and significant others and most of their socializing revolves around food. It would be more difficult for them to forego eating the gluten way and, from my experience directly, more difficult for a younger person to explain to their social group why they can't eat what many in that age group usually eat.

My nephew is pretty mature for his age and I have never inferred to him that he is not. But I really believe it would be harder for many younger people to deal with Celiac for social reasons. The Western diet is not a healthy diet and many more young people rely on fast food for meals than people in my age group....at least they do around my neck of the woods.

You are an exception to the rule to know enough about food to figure it all out at such a young age and you should be proud of that fact. You also may have been sicker than my nephew and when symptoms are not bad enough to interrupt your life, your denial button is triggered. He knows he has Celiac but keeps saying things like he can't imagine going through life never being able to eat his favorite things like a roast beef sandwich. I responded by telling him he didn't have to give up his sandwiches....he would just have to stop ordering out and make them at home with gluten-free bread. It's all perspective and I suspect the real reason is the loss of convenience and the perception your social life will be dead, which is not true.

JNBunnie1 Community Regular
Oh, I don't think it's unfair at all. I never said that all younger people are not disciplined, in fact, I never mentioned the word undisciplined. For younger people, food is a much larger social issue. It's younger people, especially unmarried younger people, that go out more often with their friends and significant others and most of their socializing revolves around food. It would be more difficult for them to forego eating the gluten way and, from my experience directly, more difficult for a younger person to explain to their social group why they can't eat what many in that age group usually eat.

My nephew is pretty mature for his age and I have never inferred to him that he is not. But I really believe it would be harder for many younger people to deal with Celiac for social reasons. The Western diet is not a healthy diet and many more young people rely on fast food for meals than people in my age group....at least they do around my neck of the woods.

You are an exception to the rule to know enough about food to figure it all out at such a young age and you should be proud of that fact. You also may have been sicker than my nephew and when symptoms are not bad enough to interrupt your life, your denial button is triggered. He knows he has Celiac but keeps saying things like he can't imagine going through life never being able to eat his favorite things like a roast beef sandwich. I responded by telling him he didn't have to give up his sandwiches....he would just have to stop ordering out and make them at home with gluten-free bread. It's all perspective and I suspect the real reason is the loss of convenience and the perception your social life will be dead, which is not true.

That's true, I was VERY sick. It does seem harder for people to follow the rules when they don't have major repercussions for breaking them. People have been trained to expect everything to be convenient and easy.

On the other hand, every single person I know has supported me wholeheartedly in my gluten-free eating. They are more on top of things at restaurants than I am sometimes, and if I go to a friends house, they either buy something or make sure they cook in a safe fashion, so that I can eat. Fortunately, I've learned to be a good enough cook that people also enjoy coming to eat my food.

Crystalkd Contributor

I'm a little diffrent. My view is this. He is 22 and able to make his own choices. Share with him what you know. I've seen that family members no matter how hard they try or how well meaning they are are still clueless and defensive in some areas. My mom knows I can't eat pizza but she still doesn't grasp the food additives thing. My saving grace was that my stepfather went organic about a year before I got sick so he understands more. Even he at times forgets and looked at me crazy when I was mad at him for sticking glutened spoon in my rice pudding. His responce: I licked it clean!!! Gotta love him.

Tell your nephew what you've learned. Don't worry about his mom so much. It's his health not hers. The punishment for ignoring what you should do for Cealic could be deadly in the long run.

Like I said I see things a little diffrently.

tom Contributor
. . . His doctor told him that anything he could eat that didn't cause him symptoms was alright.

I LOST 5-7yrs of my life by thinking this way for a few yrs, prior to the disease's more serious complications.

A couple of those 'lost' yrs are, I'm 99% positive, . . . THE . . .. WORST . .. . THING .. .. I'LL . ..EVER . GO THROUGH IN MY ENTIRE LIFE.

I could be a horrific burn victim tomorrow and next year I'll STILL say the celiac yrs were the worst.

And it was enTIREly caused by believing I could "get away with" some gluten. :(

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    2. - tiffanygosci posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Aldi Pueblo Lindo Yellow Corn Tortillas

    3. - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    4. - trents replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s

    5. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      10

      New Celiac Mama in My 30s


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,980
    • Most Online (within 30 mins)
      7,748

    Susan Upchurch
    Newest Member
    Susan Upchurch
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
    • trents
      @Mari, did you read that second article that Scott linked? It is the most recently date one. "Researchers comparing rates of headaches, including migraines, among celiac patients and a healthy control group showed that celiac subjects experienced higher rates of headaches than control subjects, with the greatest rates of migraines found in celiac women.  Additionally, celiacs had higher rates of migraine than control subjects, especially in women. In fact, four out of five women with celiac disease suffered from migraines, and without aura nearly three-quarters of the time."
    • Mari
      As far as I know and I have made severalonline searches, celiac disease disease has not been recognized as a cause of migraines or any eye problems. What I wrote must have been confusing.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.