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

Is This Common?


Mnicole1981

Recommended Posts

Mnicole1981 Enthusiast

Is it common to start suggesting to family members who suffer the same digestive issues that you have get tested?

I have probably been driving my family nuts with all of this because I have no diagnosis of anything. Everything points to Celiac disease, but if I could just get one person in my life to care, it would be appreciated. I feel like I have been dealing with this on my own.


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

Everyone I'm related to by blood lives 1000 or 2000 miles away. I haven't let that stop me! My husband has had the blood tests which like mine came back negative, fortunately his doctor knows that means nothing. I was diagnosed by biopsy, but our insurance won't pay for an endoscopy and we just don't have the money for it. So instead I have finally after almost 6 months nagged my husband into trying gluten free. It's so painfully obvious to me and he is finally willing to admit that gluten may be his problem. I call it my sixth sense (like the movie), I see celiac people.

IrishHeart Veteran

Yup, I always say I am like that little boy in the movie Adalaide mentioned.

I SEE CELIACS....everywhere. :ph34r:

I have educated my large extended family ---full of AI diseases and GI troubles ---and not one (except my Mom) has done a thing about it.

And yet, perfect strangers listen to me. My cat's vet, the dental tech, the phlebotomoist who draws my blood, the UPS guy---all went to be tested.

Are any of them celiacs? yup!

Are any of my family celiacs? Oh, you betcha.

I can talk about it until I'm blue in the face, but until someone gets as sick as I was, they will not believe it. They think I am the only one. (no, I am just the FIRST)

I gave up. They know where to find me if they want help. I lost enough sleep over it.

Don't make yourself crazy over it.

Mnicole1981 Enthusiast

Thank you. I will definitely try. I would like to be okay with my self-diagnosis, but while I feel a little bit better, there are still new things happening that worry me.

nvsmom Community Regular

I just came here to write the same thing about my mother. She says she is healthy and just has stomach issues and joint pain and heat rash and fatigue... UGH! I am almost sure she has it but she's talking about how she can eat gluten moderately and she will be fine. I argue with her but...

I told her that I'll call to nag her everyday until she gets tested. lol :rolleyes:

psawyer Proficient

You can mention it to family members. All first degree relatives of a diagnosed celiac should be screened for it.

It is common for them to refuse the idea, and there is no point in nagging them--it will only hurt your relationship with them in the long run. Mention it once--then move on.

Many claim that they are fine; many have overt symptoms, but deny that gluten has anything to do with it; many are scared of the idea of having to eat gluten-free--they would rather keep suffering.

For those who have not actually done the gluten-free diet, it sounds impossible. Even for those of us starting out, it is a major challenge. After 12 years, for me it is not a big deal. But my first year was a steep learning curve, and I did not have the benefit you do of this online support group.

IrishHeart Veteran

I told her that I'll call to nag her everyday until she gets tested. lol :rolleyes:

Don't bother. I pressed my sister (diabetes, hypothyroid, high BP, etc. etc.) because I know siblings should be tested and her symptoms are obvious, but it just irritated her and I backed off.

I worry about her, but as my doctor (and Peter)both have pointed out, she does not want the hassle of dealing with a gluten-free diet and prefers to manage her symptoms with medications and remain status quo.

She an intelligent woman. I know she reads all the info I send her and so, I have to respect that decision.


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



Celiac.com Sponsor (A8-M):



Mateto Enthusiast

I've been noticing lately a lot of my family members (and I mean a lot) are having gastric, arthritic, mood, and thinking problems....so I'm positive that coeliacs is in my family.

nvsmom Community Regular

Ahhh, yes. But my mother understands nagging, I think she sees it as a way of expressing her love. Maybe it is our Ukrainian Polish background.... Lol

I hear what you are saying though. For my brother, I told him, gave him info to look into and advice on how to get an accurate test and he'll decide whether to test based on that.

My mom on the other hand won't do any research and comes up with her own ideas based on.... I don't know what. She obviously ddin't believe me when I told her that her niece's celiac was not caused by an eating disorder as a teen. I only say I'll nag her becAuse it will work and she understands it.

Thanks for your advice.

Mnicole1981 Enthusiast

I've been noticing lately a lot of my family members (and I mean a lot) are having gastric, arthritic, mood, and thinking problems....so I'm positive that coeliacs is in my family.

Me too. My sister had pasta last night and just kept burping and passing gas all night. I notice everybody's problems now.

veruca Newbie

My parents and sister were tested and no one has it. I really thought my Mom had it. She has so many health problems that I almost wanted her to have it so she could start to feel better. No dice though. Blood tests were normal and so was her endo.

I have a cousin with fibromyalgia who I've urged sooo many times to be tested. Some people are just too overwhelmed with the idea of going gluten-free. Maybe I wouldn't have sought out a GI to figure out my issues if I had thought for a second that I could have celiacs.

~**caselynn**~ Enthusiast

Is it common to start suggesting to family members who suffer the same digestive issues that you have get tested?

I have probably been driving my family nuts with all of this because I have no diagnosis of anything. Everything points to Celiac disease, but if I could just get one person in my life to care, it would be appreciated. I feel like I have been dealing with this on my own.

When I was diagnosed my GI doc suggested I tell other family members about it so they could get tested if necessary. I have mentioned it a few times, but I figure it's ultimately their decision. Although, I don't refrain from bringing it up when I hear them complain of their gut issues! Haha no better time to have that discussion! :)

Raven815 Rookie

Hi there,

I have an opposite story. My Mom has had celiac for about 30 years and for a long time she has nagged me that I had it. I never had any symptoms and have always had a weight problem. I have had many auto immune diseases, but thought because I didn't have gut issues and was heavy, there was no way I could have it. Lo and behold, at 49 years old, I became very sick w/ DH. I ahve now had two tests come back positive for celiac (biopsy & celiac blood panel). I am dumbfounded. My Mother is gloating (not really). Now it's my turn to convince my sisters and extended family to be aware. I'm sure none of them will listen to me, either. All I can do is try.

Laura :rolleyes:

  • 1 month later...
Gemme Rookie

I think we should have a discussionamong family members. All first degree relatives of a diagnosed celiac should takeit seriously. I have tried to explain my family but no one has done anythingabout it. But there are visitors who listen to me and are living a better life,until they get as sick as I was, they will not believe it. They think it

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,869
    • Most Online (within 30 mins)
      7,748

    Stacy W
    Newest Member
    Stacy W
    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

    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
    • Scott Adams
      I am so sorry you're going through this. It's bad enough to fight for a diagnosis and manage this disease, but to have your partner use it as a weapon against you is truly devastating. What you're describing isn't just a lack of support; it's abuse, full stop. Controlling your food and money is cruel, and his pleasure in your misery is chilling. Please hear this: the kindness from that woman at the food pantry is what you deserve. It's a glimpse of the real world, where people care. You deserve to eat, to heal, and to have peace. His actions are the biggest barrier to your health right now, and you are not broken—you are surviving in an impossible situation. Don't give up on that lifeline you've found.
×
×
  • 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.