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

How To Convince Someone!


annie76

Recommended Posts

annie76 Apprentice

How do you explain this to someone, who you think may have it? Its my brothers fiance, her dad is a celiac. Matter of fact he's probably the only person I've actually met in person who has the same dx as I do. Anyhow, this girl from time to time gets big horrible mouth cankers, bad D, and gas. She's trippy as hell, I mean really moody! Anxiety, paranoia you name it. So, over the duration of their relationship her and I have developed a pretty good friendship, you know girls griping about this and that. She's got alot of the signs and has been complaining about them alot. I've explained to her how it IS genetic before, and the wide range of symptoms that come along with it. Tonight out of the blue she told me she googled the sores in her mouth and came up with celiac, or stress etc... :blink: Well, sheesh imagine that! Why in the world don't people listen to me when I talk to them about this? Its so irritating! Its not like I bring it up, or go on and on without being asked either. People ask me questions, I tell them the info. Then they ask me the same obvious question about the disease again later on...ugh! I guess people just have to suffer on their own, and go get help when they are ready, I frankly give up....well on this one anyway ;) Thanks for the rant....Julie


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

have you specifically said "I think it's possible you have this. Have you been tested, and if not, would you get tested and find out if this could be part of the problem?" sometimes, hints aren't enough.

annie76 Apprentice

Yes I have...I've said look don't you think it is a little strange that your dad has celiac, and you have so many symptoms? I've said you really need to get tested, whats it going to hurt...and on and on. My mother told me once that she would rather not know, which to me is very iggnorant...When I got really bad there toward the end, I would have done anything to just know WHAT it was so it could stop and maybe I could have a normal life...Who knows, its just frustrating!

par18 Apprentice

My experience has been that the majority of people with Celiac related symptoms will go to any length to eliminate every thing else first before finally coming to the realization that this may be their problem. The diet itself is a test but seems to be passed over in favor of the more expensive blood/biopsy procedures first. I have said it before that there are people out there that will not try the diet (or any test) because of fear that it "will" help and then they will have to start changing their lifestyle.

A person who becomes so ill or fed up with dealing with the symptoms is the best candidate to listen to what you have to say. It is sad that if someone (doctor, etc.) is actually looking for this then the diagnosis could be much sooner.

My advice to someone when facing this situation is for you to focus on the positives of this lifestyle change and let them know it is something that can be done. Act as normal as possible and let them see it does not dominate your life. If this is her problem then sooner or later with or without your help she will have come around.

Tom

tarnalberry Community Regular
Yes I have...I've said look don't you think it is a little strange that your dad has celiac, and you have so many symptoms? I've said you really need to get tested, whats it going to hurt...and on and on. My mother told me once that she would rather not know, which to me is very iggnorant...When I got really bad there toward the end, I would have done anything to just know WHAT it was so it could stop and maybe I could have a normal life...Who knows, its just frustrating!

then you have done all you can do. there is nothing else in your control. that person's health is their own business. you can choose to say that you won't listen to the complaints any more, as it's fairly obvious to you that she's being self-destructive, but that's "politically incorrect" to many people. ;)

annie76 Apprentice

Thats how I see it too, I've done all I can do. It just hits a nerve every time I hear yet another symptom come up every couple of months or so, sometimes less. She even went in awhile ago for a stomach xray or something like that, because it was bothering her so much. I just really feel like I'm witnessing someone be sick when its not necessary, I want to help, but I can't. Ugh.

DebNC84 Apprentice
Thats how I see it too, I've done all I can do. It just hits a nerve every time I hear yet another symptom come up every couple of months or so, sometimes less. She even went in awhile ago for a stomach xray or something like that, because it was bothering her so much. I just really feel like I'm witnessing someone be sick when its not necessary, I want to help, but I can't. Ugh.

I'll bet if she develops DH- she'll listen!! I almost went nuts with it. I didn't know cankers were celiac related... yet another thing i've had all my life and dealt with it. (i'm 45) A new day is dawning for sure. No more gas - no more migraines - no more rashes - no more ankle swelling - maybe I can get pregnant now - AND NO MORE MOUTH CANKERS!! My goodness.. does that mean I'll be NORMAL!!

(Just in case you are wondering- i just became gluten free 1 1/2 weeks ago, a desperate attempt to get rid of a super bad rash that I've been suffering with since last september - IT WORKED ! )


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



Celiac.com Sponsor (A8-M):



annie76 Apprentice
I'll bet if she develops DH- she'll listen!! I almost went nuts with it. I didn't know cankers were celiac related... yet another thing i've had all my life and dealt with it. (i'm 45) A new day is dawning for sure. No more gas - no more migraines - no more rashes - no more ankle swelling - maybe I can get pregnant now - AND NO MORE MOUTH CANKERS!! My goodness.. does that mean I'll be NORMAL!!

(Just in case you are wondering- i just became gluten free 1 1/2 weeks ago, a desperate attempt to get rid of a super bad rash that I've been suffering with since last september - IT WORKED ! )

Ya, I never had the cankers, I learned about them here. I had one day out of the blue strange chest pain, which ended up being my intestine actually. From there came the constant D, horrible fatigue, and my weight fell to 20 lbs below anything I'd ever weighed before...I just hope my friend will eventually get a test, I'd hate to watch someone go through that before my eyes.

DebNC84 Apprentice
Ya, I never had the cankers, I learned about them here. I had one day out of the blue strange chest pain, which ended up being my intestine actually. From there came the constant D, horrible fatigue, and my weight fell to 20 lbs below anything I'd ever weighed before...I just hope my friend will eventually get a test, I'd hate to watch someone go through that before my eyes.

I have to convince my daughter (25yrs) that her migraines - stomach cramps - and cankers may be gluten induced... my sister says I'm freaking her out... she doesn't want to have this but I think that she may have an intolerance to a degree. I'll not say anymore to her.. she's smart - she'll check it out. :) I just want my family to be informed - :huh:

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. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

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

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748

    kygirlsusan
    Newest Member
    kygirlsusan
    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

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  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--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • 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.