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

My Adult Children Are Sick And In Denial


CatandCanary

Recommended Posts

CatandCanary Rookie

I'm new to being a Celiac and my kids are also sick, my son 21 and daughter 24 both have realy bad mood swings and all the other problems that I had suffered with for years. It seems they are much worse than I was. They have both tried the diet and when they are gluten free it is as if they change into such wonderful and balance people but when they eat gluten they become almost manic or high on the food they are eating and then the depression and body problems. My question is what can I do about the problem or should I even try. My son's mood were so bad at one point one doctor told me he thought he might be bipolar. My daughter woke up this morning saying she was bothered by everyone, me, her boyfriend, and her co-workers because no one is listening to her, everyone else has a problem, she doesn't feel it is her and I can tell you it is her, the bad mood swings make her awful to live with. The problems they have are empacting there lives in negative ways. Please help if you have any ideas. :(


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Unfortunately, they are adults, and there's not a lot you can do. You can tell them you had a similar experince, ask them to get tested by their doctor, and demonstrate that they need not be at all deprived on a gluten free diet. But don't nag, or they may stay on gluten just to annoy you.

Nancym Enthusiast

Are they living with you? If so, you could simply take your household gluten-free if you're the one doing the cooking and shopping. Put your foot down and say that as long as they're living with you, they're going to be gluten-free. It's what I'd do. Not a whole lot you can do outside the house, but at least in your space you can control it. That's how my parents were with us. When we were on their turf, we had to live by their rules. If they were into wheat grass and soy burgers... that's what we had to eat. :P

Actually, I'd probably be a little sneaky about it and not tell anyone. I'd just do it. If you tell them they'll rebell by going out and stuffing themselves full of gluten. :P

Other than that, not a whole lot you can do really. Present them with the information but if you push too hard, they're likely to reject the info.

tiredofdoctors Enthusiast

My daughter was just tested for Celiac because of other things, but my son has not been. My son, however, is WAY on the bandwagon with me with regard to gluten-free cooking, and he has said for a very long time how TERRIBLE he feels after "carbs" (meaning pasta!).

Are your kids open to receiving information with regard to Celiac? If not, leave the one that will scar the poop out of them that has to do with neurological damage. That would get ANYONE on board quickly! Or at least make them get tested . . . . .

Whatever happens, good luck to you, and please keep us updated . . . .

winki4 Apprentice

My two adult brothers (53 & 55)both have serious mental and physical issues, one being diagnosed as bi-polar. Both completely refuse to accept a Celiac disease diagnosis. I assumed it must not be "macho" to have a problem with food. It amazes me how they both choose to remain ill. I'm 11 years well now after spending 40 plus years sick all the time. They both have no idea what a life they are missing out on! :D

CatandCanary Rookie
Unfortunately, they are adults, and there's not a lot you can do. You can tell them you had a similar experince, ask them to get tested by their doctor, and demonstrate that they need not be at all deprived on a gluten free diet. But don't nag, or they may stay on gluten just to annoy you.

Hi Tiffany,

Thank you for your reply. Your right the fact that they are adults. It's hard because they don't realy understand what they are doing to themselves. They constantly complain about thier problems and in the back of my mind I want to scream out the gluten word. I know I can't nag at them or it will get worse. It's realy hard to see your kids mess themselves up with drugs or alcohal but gluten I never thought it would be the most distructive. Thanks for your help and your ideas.

Cathy

Pink-Bunny Apprentice

I agree with Nancym...just start cooking gluten free and don't say anything. Unless it's stuff like breads and pasta I don't think they would notice. and if they do notice just say you want to talk to them about it without them interrupting.

On a side note. I wish my grama was more like you. I'm doing gluten-free on my own no professional dx for now. And she just thinks I'm nuts and a 'fad'. But I know how I feel. And I think that she'd be happy now that I haven't been complaining about my problems.

sorry about that.


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



Celiac.com Sponsor (A8-M):



CatandCanary Rookie
Are they living with you? If so, you could simply take your household gluten-free if you're the one doing the cooking and shopping. Put your foot down and say that as long as they're living with you, they're going to be gluten-free. It's what I'd do. Not a whole lot you can do outside the house, but at least in your space you can control it. That's how my parents were with us. When we were on their turf, we had to live by their rules. If they were into wheat grass and soy burgers... that's what we had to eat. :P

Actually, I'd probably be a little sneaky about it and not tell anyone. I'd just do it. If you tell them they'll rebell by going out and stuffing themselves full of gluten. :P

Other than that, not a whole lot you can do really. Present them with the information but if you push too hard, they're likely to reject the info.

Hi Nancym,

My son lives on his own but is always at the house to do laundry and get some free home cooked food. My daughter is living with me but she is only here every other weekend because she spends most of her nights with her boyfriend.

I did gluten free the intire house and only cook gluten free food and they complain all the time that we don't have real food, it suprising because they always leave full. :P

Thanks for thinking the way I do.

Cathy

CatandCanary Rookie
My daughter was just tested for Celiac because of other things, but my son has not been. My son, however, is WAY on the bandwagon with me with regard to gluten-free cooking, and he has said for a very long time how TERRIBLE he feels after "carbs" (meaning pasta!).

Are your kids open to receiving information with regard to Celiac? If not, leave the one that will scar the poop out of them that has to do with neurological damage. That would get ANYONE on board quickly! Or at least make them get tested . . . . .

Whatever happens, good luck to you, and please keep us updated . . . .

Hi tiredofdoctors,

My son wants to be gluten free but always complains it cost to much for the food or it's to hard to get on the run, just lazy I think. He told me he knows it affects him because he sometimes feels drunk or sick after eating a lot of gluten and his thinking changes along with bad moods and depression. Do you know where I can get the neurological damage info? My daughter just doesn't seem to believe she has a problem but everyone around her does, realy bad moods, constapation and other things.

Thanks for taking the time to answer it realy helps. :)

My two adult brothers (53 & 55)both have serious mental and physical issues, one being diagnosed as bi-polar. Both completely refuse to accept a Celiac disease diagnosis. I assumed it must not be "macho" to have a problem with food. It amazes me how they both choose to remain ill. I'm 11 years well now after spending 40 plus years sick all the time. They both have no idea what a life they are missing out on! :D

Hi winki4,

I also have a brother that has problems, when he was a child he had all the bad stuff. He still today no matter how hard I try will not live a normal life, he lives like a homeless person by choice, he doesn't have to he is a suppervior and hold a very good job. He has mood and reasoning problems this has gone on from childhood until now and he is 44 year old. I remains distant from all of the family. I am trying to contact him with the hope that he will listen to me about poss gluten problem but I don't think there is much hope for him. It has been realy hard for me because my parents died when we were in our early 20s. I have tried a lot of things but nothing has ever helped him.

My heart goes out to you. I don't know about you but I love feeling better. :P

Cathy

I agree with Nancym...just start cooking gluten free and don't say anything. Unless it's stuff like breads and pasta I don't think they would notice. and if they do notice just say you want to talk to them about it without them interrupting.

On a side note. I wish my grama was more like you. I'm doing gluten-free on my own no professional dx for now. And she just thinks I'm nuts and a 'fad'. But I know how I feel. And I think that she'd be happy now that I haven't been complaining about my problems.

sorry about that.

Hi Pink Bunny,

You have to believe in yourself always, you are all you have and I'm sure it's not a fad. If you feel better you have to keep doing it, even our own doctors have tried to help and it seems we just get sicker. I have found that we must take care of ourselves the best we can because doctors can only do so much and we are just a nother job to them.

I believe in you :D

kbtoyssni Contributor

I wouldn't worry if they complain that there's no "normal" food in the house. Honestly, if they want to eat your food, they're just going to have to deal. And who's defining "normal" here? Food is food. I find I eat everything I used to with only a few substitutions.

Although gluten-free is more expensive in the present, I am more than willing to pay more for food if it means a lifetime of health. Not to mention all the money I'm saving on medical bills.

It may just take time. They may need to get more sick before they'll listen. For now, you could sprinkle your house with books like Dangerous Grains which talk about the correlation between celiac and mental disorders.

tiredofdoctors Enthusiast

I found some links that deal with Neurological Celiac (some are better than others!):

Open Original Shared Link

Open Original Shared Link (this one has a LIST of neurological cond.)

Open Original Shared Link

Open Original Shared Link (This one was written in 1999!!!!!)

Hope these help!

Lynne

  • 4 months later...
Indea88 Newbie

Oh My! I'm sorry to say I know far too well about this denial and frustration for the family. My husband REFUSES to be gluten free, refuses the bloodwork, the testing. He has now developed thyroid disease, suffers from 10-15xs a day trips to the bathroom, mood swings, depression, you name it...He has had diarrhea his entire life, now he is developing other diseases from his stubborness. There is nothing more I can do or say.. My toddler was diagnosed at 18 months. I'll be damned if this disease will affect my young son's life. My son had a diagnoses of Autism until he was gluten free..the spinning, the fogginess, the diarrhea GONE. It took one simple blood test. I hear your frustration, you are not alone...

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. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

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

      Have I got coeliac disease

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

      Have I got coeliac disease

    5. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,153
    • Most Online (within 30 mins)
      7,748

    Jenn18
    Newest Member
    Jenn18
    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
      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.
    • trents
      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
×
×
  • 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.