Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Is This Common?
0

14 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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! :)

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,345
    • Total Posts
      920,489
  • Topics

  • Posts

    • I am sorry that you are sick!   Unfortunately, all celiac testing requires you to be on gluten.  😔.   Testing is usually not over until you get an actual diagnosis, but it appears that you may very well have celiac disease.    Here is more information: http://www.cureceliacdisease.org/screening/ http://theceliacmd.com/2015/06/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet-3/ in the meantime, you can eliminate dairy products temporarily.  It may provide some relief.  
    • Karen, the iodine test was a test for DH used in the 'olden' days. Iodine would be swabbed onto a spot and then it would be covered with a bandage. If someone had DH the iodined area would break out in lesions. I don't know how but we do know iodine can activate the antibodies. That is why some of us with DH have to avoid iodine in foods until the antibodies have cleared the dermis. OP, if you haven't been tested for celiac you should be and if you have active lesions a biopsy done next to a lesion by a DH knowledgable dermatologist may help in diagnosis.
    • The gluten-free diet (GFD) is the only validated treatment for celiac disease (celiac disease), but despite strict adherence, complete mucosal recovery is rarely ... View the full article
    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,415
    • Most Online
      1,763

    Newest Member
    Ails123
    Joined