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M.Y.O.B. vs the Desire to Help: Does Concern Ever Win Over Respecting Privacy?

As a Celiac Disease/Gluten Intolerance Nurse/Educator,  I help people regain their health by learning to follow a gluten-free diet.  In doing so over time I have become so familiar with every manifestation of Celiac Disease and gluten sensitivity that I can often recognize symptoms in people at a glance.   Perhaps you can too.  You know, the fair-skinned Celtic or blond Nordic types, with a butterfly-rash on their faces, or dermatitis on their hands, elbows, or legs, a general puffiness in their appearance.   Sometimes you hear them complain about general stomach discomfort or bloating, or itchy skin, or aching joints.  These are not people I know well, but general acquaintances, like the cashier at the market, or the child of a friend of a friend whose mother is an MD. 

I
am a highly intuitive person, and I often used my intuitive abilities as a nurse on a busy surgical floor.  When my inner wisdom told me what was going on with a patient, I never failed to listen, and advocate for what I felt was in the patient's best interest.  But, I'm not in that environment anymore, and John Q. Public is not one of my patients.  Still, sometimes I feel as if I ought to say something.  Do you think it is ever appropriate to do so?  Gluten Intolerance and Celiac Disease are still not part of the common vocabulary.  The people I counsel and that take my cooking classes have all navigated long, circuitous paths to finally get a diagnosis.  How great it would be to help steer someone in the right direction, maybe skipping years of frustration and ill health!  But, I am by nature a reserved person, brought up to respect the privacy of others.  Is there a graceful way to intervene and provide information on gluten sensitivity to relative strangers?  That is the question I pose, and I look forward to reading any responses.

As always, Celiac.com welcomes your comments (see below).


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5 Responses:

 
Kristen

said this on
24 Sep 2008 10:42:49 AM PST
Hi Wendy! I admire your intuitive and medical abilities, as I am sure that they have helped many. I suppose the overall answer is: it depends on the person.
Your above description (puffy with butterfly cheeks) largely describes a very close relative. My own genetic testing (which found two copies of the genes for gluten sensitivity) is proof enough (for me anyway) that he should consider trying out a gluten free diet. But it is ultimately his choice, and I have been pretty much forbidden from continuing my urging for him to do so.
It is a tough call, I love this family member so I suppose I will never give up trying to get him to at least try it for a week and see if there is improvement. But (as much as I hate it) I must also respect his own choices.

 
lunah

said this on
12 Oct 2008 1:16:20 PM PST
I think some people don't like to hear that you might know more about them than they know of themselves. My husband's relatives all show signs of having celiac but when I've suggested getting tested they are willing to rely on a misdiagnosis rather than accept that I might have pegged it right. Now they are avoiding all lactose yet are still having serious issues. I find that if you are vocal sometimes it blows up in your face. I agree, it's a tough call - especially in your case being a medical professional.

 
Heidi

said this on
22 Oct 2008 11:41:22 AM PST
I knew a person whose daughter has Chron's. I'd see this precious little girl eating cheese, noodles, breads, cakes - a diet of mostly gluten and dairy. I'd be thinking this is the wrong diet for a girl whose so sick. I did finally say something about the research I've read but her response was the doctors haven't mentioned that and it's too hard to get her to eat other food. Ultimately, the person is going to do what they want. I think it's sad, but I feel that if I know something, I need to share it and they can do what they want with the info. You never know when you might influence a person to try better things for their health.

 
Cheyenne

said this on
09 Nov 2008 6:06:35 PM PST
I have no reservations about speaking to complete strangers about Celiac Disease. In fact it's an ongoing joke in my family that any symptom is diagnosed by me as Celiac Disease. A Lot of the people I have spoken with don't take it seriously, but a few do. I know that I have personally helped 2 people get diagnosed, 1 little girl was 6 and a woman that was having a hard time getting pregnant. All of the people that don't take my words seriously I forget about, but I will never forget about the people that I've helped. The reason I think this is so important is because I knew someone who had Celiac disease and spoke to me about years ago, however she didn't tell me how common it was, or that my symptoms sounded like Celiac Disease. Had she bluntly told me I could have avoided my daughters seizures a lot sooner!

 
said this on
12 Jan 2009 3:29:58 PM PST
As a registered dietitian and specializing in adverse food and chemical reactions (including IBS, celiac, etc) - I often find people complaining of symptoms that I'm pretty sure I could help with. However, I also don't want to be 'the food police' as that's a turn-off socially to most people.

I have learned to ask, 'Do you mind if I offer you some unsolicited advice?' If a person says yes, I gently speak my piece. If they say no, then I leave it at that.

Interestingly, most people say yes, but since I asked 'permission' they aren't offended or put off.

You might want to consider those few words of permission to break the ice, and maybe save them a lot of misery.




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