Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

A Relative Is Diagnosed Celiac- Won't Go Gluten-Free


LeahBanicki

Recommended Posts

LeahBanicki Rookie

A close relative I will call Peggy, was diagnosed a few years ago with Celiac Disease. Before I was actually. None of my family knew anything about the disease.

Now several members of my are diagnosed and living gluten free but Peggy refuses to go gluten free cause she doesn't thin it will help. Her body is in pain all the time and her Kidneys are failing and growing horrible stones and now she is vomiting undigested food. I am so worried about her.

Just the other day I begged her to try and go gluten free so her body could heal. She said she would and then two days later she was eating a foot-long sub.

I love Peggy and want her to feel better. Not sure how else to tell her that her choices could be killing her. She moved away from the doctor from the original diagnosis so she has no one besides the family members telling her to be careful.

So frustrated and scared.


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

Sadly, you can lead the horse to water, but you can't make her drink.

She knows, and she knows that you know. So, reminding her will accomplish nothing.

You have told her. There is nothing more that you can do. If she chooses to ignore it, that is her choice. Do not let it become YOUR problem.

It is hard to watch a loved one self-destruct, but there is only just so much you can do.

SleepyBunny Apprentice

I believe my family could benefit from going gluten free also. Two of them have pretty much told me I'm not giving up my food. Not only are gluten containing foods bad (for obvious reasons) but as I'm sure you know they are highly addictive and that makes it incredibly hard to stop eating them. I've been gluten-free for almost a year and I still find myself wanting to eat that stuff. She's just going to have to figure this one out for herself. You can only drill this into people so much. They have to want to do it for themselves. I hope she figures it out! Peggy is lucky to have you :)

ravenwoodglass Mentor

Can you get her to come here and talk to us? Maybe we can help her realize that no matter how far her disease has progressed the diet can help. Some of us just are so sick we have no hope before diagnosis and it is hard to grasp the idea that so much of our pain can be caused by what we are eating. That combined with the withdrawl can make the first weeks really tough.

That said you can't force her to go gluten free as much as you want to see her healthy. You're in a tough spot as it is hard to see someone we love suffer so much.

(((((((((((((((((((((((HUGS))))))))))))))))))))))))

~**caselynn**~ Enthusiast

I have a family member this way as well, she's willing to listen but not ready to jump in. Although, I'll give her props, she's slowly begun to make the transition with my help. I figure that if she's slowly making the transition then it's a start, I give her recipes and when we have family parties my family always is super conscious of me being gluten-free. So it's easier to sit down and eat with me, maybe it's all about not feeling singled out? Not sure but it's working and I'm glad for her in that aspect!

srall Contributor

My younger brother absolutely must go gluten free. Unfortunately his blood test for celiac was negative so the GI told him gluten wasn't the cause of his many many many many health (physical and mental) problems. He kind of knows he needs to go gluten free but is worried about the cost, loss of convenience and giving up his favorite foods. He's a 40 year old grown man, so all I can do is lecture him when I see him (hey, I'm a big sister) and then watch him be miserable. Very painful.

I think just making your family member aware and gently educating her as you go along may help. One of these days she might just get so tired of feeling like crap all the time that she'll go for it. I'm sorry because I know it's hard to watch.

IrishHeart Veteran

I have to agree with Peter. It will not help to badger her.

If she is intelligent enough and has read about celiac disease, she knows she is doing the wrong thing.

I have dealt with this myself. My large extended family is full of people with AI diseases, GERD, IBS and other bowel issues, depression, etc. and it pains me to see them all ignoring the one thing that could help them resolve some of these problems. It is so hard to watch them, and I lost many nights of sleep worrying about them all and agonizing over "why don't they listen to me"??

They all saw me dying from it. They know what this can do to someone.

I was the first to be DXed, and they think I am the "only one". I have sent them a letter and literature to read and why it is essential to be tested.

My Dad surely died from complications of celiac, but I became very ill right around the time of his death, so I could not have known back then it was the basis of his many illnesses. His symptoms scream "celiac" and I see it pretty damn clearly now.

Only my 85-year-old Mom went gluten-free --about 5 months after my DX---and she feels great! :)

My doc even told to give it up. For my own sanity.

You are so sweet to care about Peggy, but Peggy has to learn to care about Peggy.


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



Celiac.com Sponsor (A8-M):



icm Apprentice

Peggy needs to be informed, as others have said, about the risks and complications of celiac disease. I've been gluten free for about 12 years and have yet to personally know one other person who takes this condition as seriously as I have done over the years.

I was young at the time, too - only about 8 years old.

Do you have a celiac support network in your area? They may hold gluten free dinners at a gluten-free friendly restaurant every now and then and are a great way for celiacs to meet others who have had personal experience with the issues mentioned above.

However, at the end of the day, the choice is hers.

squirmingitch Veteran

Perhaps the only thing you can do now is to print off some of the stories of some of the ppl on this board who were way worse off than Peggy is now when they found out they were celiac & went gluten free. Then next time you visit Peggy, you could quietly leave those print outs at Peggy's house so she will be sure to find them. when she's all alone & finds them hopefully she will read those stories & see how these ppl have healed.

Everyone who has stories like that (like you IH) could leave a link to the post where your story is & Leah could then have easy access to them in order to print them out.

Otherwise Leah, my heart breaks for you & Peggy & for the suffering you go through watching a loved one destroy themselves. But I agree with everyone else here. Bottom line --- Peggy has to want to save Peggy.

bartfull Rising Star

Maybe invite her over for a delicious gluten-free meal? Maybe once she sees that gluten-free can be just as tasty as gluten foods she'll give it a whirl. If you could just get her to go gluten-free for a week or two I bet she'd start feeling so much better she'd be GLAD to go gluten-free.

LeahBanicki Rookie

Thanks everyone for the thoughts. It's great to have a place where I can air out my frustrations. Having a safe community to talk too is priceless.

Thanks Everyone. I will try and convince Peggy to join up and get educated.

Praying for her to get informed.

Thanks to my new friends.

~ Leah

LeahBanicki Rookie

Maybe invite her over for a delicious gluten-free meal? Maybe once she sees that gluten-free can be just as tasty as gluten foods she'll give it a whirl. If you could just get her to go gluten-free for a week or two I bet she'd start feeling so much better she'd be GLAD to go gluten-free.

I just shared a piece of gluten-free chocolate cake with her. It was a great recipe. So glad to see that she liked it. Just wanting her to know it can be done.

:D

~**caselynn**~ Enthusiast

I just shared a piece of gluten-free chocolate cake with her. It was a great recipe. So glad to see that she liked it. Just wanting her to know it can be done.

:D

That's a great start, and keep showing her it can be done! When she's ready you'll be there for her, and that's the best part, having an awesome support system! :) ....chocolate cake always helps too haha!

cap6 Enthusiast

Peter is so right. You can give her the info but you can't force her. I have a brother who doesn't care and three friends who I feel certain have celiac or would benefit from the gluten-free life. One friend told me she could never give up her bread and pasta and continues to suffer from chronic D. You can give it out but some people just don't want to hear. Gluten-free is a total and complete lifestyle change and it isn't always easy. Most people don't want the inconvience. Sad but true.

bartfull Rising Star

I had a good friend years ago who had such terrible D and other celiac symptoms. I didn't have it back then but Mom did, and I KNEW that was her answer. Her doctor didn't have a clue, and just kept telling her it was IBS.

I BEGGED her to try a gluten-free diet for a while, but she said she REFUSED to have celiac because she just loved eating out. (She and her husband hardly ever ate a meal at home, and because they were well off, they ate at really good, expensive restaurants.) She would not even TRY gluten-free, because if it made her feel better that would mean she had it, and she said she would rather be sick and die an early death than to give up her fancy restaurant meals.

I've lost touch with her and have no idea if she has since changed her mind, or if she has now developed the complications we all know are likely...

Juliebove Rising Star

Yep. Similar situation here. Not celiac but food intolerances or allergies. Not sure which exactly. Just know what foods this person has said in the past that she can't eat. And then she eats them. And then she complains about how sick she is. And then she wants sympathy. Well she won't get it from me. I just leave. I won't deal with it. I do know in this person's case part of it is her age and the memory problems that she won't admit to having. She has said stuff like, "I never eat bananas and I don't know why!" Well... I know why. And recently she has eaten bananas and then got sick. Drives me up a wall. But there really isn't much you can do. She has also told my daughter and I that we are not allowed to discuss her diet in any way shape or form and if we do we will not be allowed back in her house. Yes, she is the very controlling sort.

frieze Community Regular

I had a good friend years ago who had such terrible D and other celiac symptoms. I didn't have it back then but Mom did, and I KNEW that was her answer. Her doctor didn't have a clue, and just kept telling her it was IBS.

I BEGGED her to try a gluten-free diet for a while, but she said she REFUSED to have celiac because she just loved eating out. (She and her husband hardly ever ate a meal at home, and because they were well off, they ate at really good, expensive restaurants.) She would not even TRY gluten-free, because if it made her feel better that would mean she had it, and she said she would rather be sick and die an early death than to give up her fancy restaurant meals.

I've lost touch with her and have no idea if she has since changed her mind, or if she has now developed the complications we all know are likely...

or...is already dead.

GFinDC Veteran

People are stubborn. I have a brother who is at least saying he might try the gluten-free diet now, after years of being sick. So they can change sometimes.

Don't forget to try the gluten-free peanut butter cookies on her.

1 cup peanut butter

1 cup sugar

1 egg

1 handfull of Enjoy Life choco chips.

bake 10 minutes.

LeahBanicki Rookie

People are stubborn. I have a brother who is at least saying he might try the gluten-free diet now, after years of being sick. So they can change sometimes.

Don't forget to try the gluten-free peanut butter cookies on her.

1 cup peanut butter

1 cup sugar

1 egg

1 handfull of Enjoy Life choco chips.

bake 10 minutes.

Thanks for sharing that. I could use a cookie today. Looks simple. :)

squirmingitch Veteran

People are stubborn. I have a brother who is at least saying he might try the gluten-free diet now, after years of being sick. So they can change sometimes.

Don't forget to try the gluten-free peanut butter cookies on her.

1 cup peanut butter

1 cup sugar

1 egg

1 handfull of Enjoy Life choco chips.

bake 10 minutes.

What temp. do you bake them at?

GFinDC Veteran

What temp. do you bake them at?

Cookie temp, 350 F. Sorry, left that out. They are better than regular floury cookies too. They don't have a flour taste, which is not somethi9ng you miss once it's gone from a cookie.

sreese68 Enthusiast

Cookie temp, 350 F. Sorry, left that out. They are better than regular floury cookies too. They don't have a flour taste, which is not somethi9ng you miss once it's gone from a cookie.

They freeze well, too. I have a lot of food intolerances, and this is one of the few desserts I can have. I make two batches at a time and freeze them.

They're also great to bring to parties because everyone loves them.

squirmingitch Veteran

Cookie temp, 350 F. Sorry, left that out. They are better than regular floury cookies too. They don't have a flour taste, which is not somethi9ng you miss once it's gone from a cookie.

Thanks gluten-free! NOW it's in my recipe collection.smile.gif

  • 1 month later...
txplowgirl Enthusiast

I have a cousin who has a son who has all the signs of Celiac and is so allergic to MSG he has to carry an epipen with him. H'e like 12 now, and she would rather him have his epipen than try to avoid MSG let alone gluten. :blink:

psawyer Proficient

I have a cousin who has a son who has all the signs of Celiac and is so allergic to MSG he has to carry an epipen with him. H'e like 12 now, and she would rather him have his epipen than try to avoid MSG let alone gluten. :blink:

That is so saddening.

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. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748

    Nick H.
    Newest Member
    Nick H.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...