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
Mnicole1981
Posted

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
Adalaide
Posted

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
IrishHeart
Posted

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
Mnicole1981
Posted
  • Author

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
nvsmom
Posted

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
psawyer
Posted

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
IrishHeart
Posted

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
Mateto
Posted

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
nvsmom
Posted

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
Mnicole1981
Posted
  • Author

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
veruca
Posted

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
~**caselynn**~
Posted

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
Raven815
Posted

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
Gemme
Posted

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.

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    2. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
    4. Scott Adams
      0

      Gluten-Free Peanut Butter Cup Swirl Brownies

    5. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,259
    • Most Online (within 30 mins)
      7,748
    Lindia
    Newest Member
    Lindia
    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

    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Related issues

      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      Airborne Gluten?

      By MogwaiStripe · Posted

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
×
×
  • 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.