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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.