35 replies to this topic

[angel_jd1]

Here is another thing that could be displayed in an office. You need adobe acrobat to open it. http://www.celiacfac.../pdf/celiac.pdf

-Jessica

[hthorvald]

I can see the arguement for both sides, but am leaning towards Pastor Dave's point of view. Ever since I've been diagnosed a Celiac, I can't tell you how many times I have leapt to the conclusion that a friend, or stranger for that matter, has celiac disease because of their appearance or symptoms. Absolutely offer it (where appropriate) as a source of education, but in this situation, I agree that leaving it to the professionals is probably best.

H.

[jknnej]

Well that's the difference between us. I never leap to the conclusion that people have celiac disease; instead I feel that simply ruling it out is one of the easiest ways to discover your problem. I had to undergo a colonoscopy before the blood test. WHY should anyone have to go through a procedure like that before taking a simple blood test? It doesn't add up. When a person has consistent symptoms of something for a long time why not check the easiest things first rather than putting them through painful tests?
And why leave this to medical professionals? My doctor didn't even know what Celiac Disease was. That certainly doesn't instill faith or confidence in the medical community. She also had no clue what a gluten free diet was. And let me tell you, she's not the only doctor like that.
I absolutely side with bambam. And look at the media and television. They can tell us what to eat, what to wear, what we should weigh through advertising, and suggest all kinds of things about our lives, but you want to criticize someone who sincerely wants to help people? I think we need MORE people like bambam in the world, not less.
And no, I don't go around telling everyone to get tested for celiac disease. But if someone tells me they have persistent stomach problems I certainly suggest the blood test.

[debmidge]

From my experience with inept Gastro doctors alone, it would behoove someone who knows what celiac is to place a Celiac pamplet/brochure in the waiting room of every doctor's office. I am not hoping that the patients read it, I am hoping that the doctor reads it!

The expression "nothing ventured, noting gained" comes to mind here. By at least putting the brochure out there, if anything, someone will become more informed about celiac disease.

As an employee of the doctor's office you cannot approach these people about testing or even dicuss their symptoms, that's true; and yes, now that I am aware of celiac disease I cringe when people tell me that their doctor told them that they have IBS or plain old stomach problems. If they are a friend or co worker or neighbor I suggest that they get "the special blood test to see if they have anti bodies for celiac disease." I also mention that it's possible that they don't have celiac disease, but it doesn't hurt to rule it in or out. I advocate testing, not the gluten free diet in of itself. The diet is a result of knowing the test results. But again, this cannot be done when you are an employee in a clinic.

Question to BamBam: Do people or dr. who runs the clinic where you work know you have celiac disease? If so, then I am sure they wouldn't question a celiac disease brochure just lying there in the waiting room area.

As for me, I can be nothing less than who I am, and I don't mean anything bad by this, but I talk about celiac disease to all who will llisten. For me, 4 out of 5 gastros (not counting the numerous GP's he saw in between) did not properly diagnose celiac disease in my husband; so I cannot and will not leave it up to the medical profession. If the medical profession doesn't want me to hussle in on their territory then they better straighten up and do their jobs properly. But, I do not work in a medical office, so I don't have to worry about privacy issues. For instance, a group of Girl Scouts were selling cookies outside of the local supermarket. I spoke to the adult leader while declining to purchase and explained why I couldn't take up their office. I have the leader the CSA brochure. None of them may have celiac disease, but perhaps they are little more informed about it.

I use my own money and buy the brochures from CSA and I leave a copy everywhere - all doctor's waiting rooms, beauty parlor I go to, my chiropractor's office, the X-ray center I had to get xrays at, my office lunch rooms, the hospital's lobby, the laundromat, Whole Foods where they keep info from local businesses and health services, -- everywhere in my daily travels I try to remember to leave a brochure.

Maybe someone who needs to know this info will pick it up. In some instances, I ask the proprietor permission before I drop one, and I've never been told No. I've given them to waitresses who were very interested, co workers who knew others that were recently diagnosed, medical professionals who didn't know what celiac disease was, parents of children who had digestive problems that the doctors were telling them that they'd "grow out of," etc.

This disease has been in the dark for too long. We cannot count on drug companies nor government to plead our case to the public, so we must take to the streets ourselves and be our own advocates.

[BamBam]

I just logged in today, and thank you all for your input. I have read them all with great interest in regards to my situation. I thank you all.

First, where would I get or purchase some pamphlets. I like the idea of leaving them everywhere I go, not just here at the clinic. I had an idea earlier last year, of posting posters in rest areas with little slips with the celiac.com web site to tear off. I have yet to do that. But still think it is a good idea.

Pastor Dave, I thank you for your advice. It is true, Celiac is one of hundreds of diseases and intolerances out there and to specifically pick one is not right. However, we do have a place here to place pamplets, there is all kinds of things already in there having to do with cholesterol, blood pressure and many other problems. So I think this is my area to place some pamphlets. I never intended to place posters up on the walls or anything like that, I just want to put some awareness out there in my little town in Montana that knows nothing about gluten intolerance. I will ask before I place any info out.

Yes, my provider and people I work with know that I am gluten intolerant. But my provider calls it an allergy and doesn't really know a whole lot about it. She is very aware though about ordering my meds, and makes sure they are gluten free. The people I work with refer to my problem as a "special diet" and I am always offered items, and I very politely decline, but I still enjoy the company or event that is happening, even if I have to run home and grab something to eat.

Again, thank you all for your input, I think we all need to do what we can to get some information out there. I think I am going to make my little posters this weekend, we are going out of town, and I can place them in the rest areas. I'm gonna tape them on the inside of the bathroom stalls. My husband says he will put them in the men's bathrooms. If I get one person healed, it is worth the paper and travel.

BamBam

[celiac3270]

I agree with Kristina (mysuicidalturtle)--

Also, you could wear something that would trigger a question, giving you the right, I suppose, to mention celiac. Such as the Making Tracks for Celiacs Bracelet or a pin--just a thought--don't know what the laws restrict.

[cdford]

I try hard not to "armchair diagnose", but when I come across someone who has what is considered the usual symptom spectrum, I'll often ask them if they have discussed the possibility of celiac with their doctor. That will usually generate enough discussion for me to encourage them to talk with their physician about it. By doing that, I have not usurped the role of physician and have pointed them in the direction of proper medical care. They can take it and run with it or leave it. If they do nothing but bring it up with their doctor, they are better off. Now if I could just convince a few of my family members who have had symptoms since before I realized what it was to get tested...ah, but that is a whole different story.

Those of you in the medical offices have a different set of difficulties, I know. There may be times when you just have to say a prayer that the Lord will open their physician's eyes since you can't say anything. The prayer can't hurt you and might help them.

[debmidge]

They are pricey (50 cents each) but I get the brochures from the CSA.
www.csaceliacs.org
Their Order Form can be accessed thru their website.

[FreyaUSA]

This is a very interesting discussion! Pertinent to me atm, too. Just recently, on a diet board I frequent, there has been a huge discussion going on about IBS and hypoglycemia. Several of the people discribed their symptoms and, because it sounded so similar to how I'd been before I discovered my problems, I sent them private messages. Basically all I did was ask them if their gi docs had tested them for celiac disease (and mentioned that IBS is often misdiagnosed for people with celiac disease just because doctors are just not that aware of it.) In just the last week, three responded that they'd never heard of it. One even called her doctor and asked to get the test done (and had it done Friday.) The one who had the test done said her doctor told her she couldn't have it, she's overweight which, she said, made her so angry she insisted on it. (I might have mentioned that doctors often have this misconception Hey, it's a diet board afterall!)

I feel like I might be annoying some people with this, but if I help any, it will be worth it. (And atm there are two others on this board that have discovered they have celiac disease because of our conversations. Actually, one even found out her daughter has it, too.) I know I'd never have known what was wrong with me if someone -- a stranger, btw -- hadn't taken the initiative to offer their opinion to me! (14 years of having so many odd problems, of having many painful tests done, of feeling miserable are OVER!)

[jknnej]

I met a woman who owns a restaurant in Ouray, Colorado this weekend. My hubby went in for a sandwich, and of course, I couldn't eat there; nothing was gluten-free. The woman who owned it asked why I wasn't eating and I told her. She said her mother has celiac disease and she has all the symptoms and always has but that she is in denial and just can't change her diet. She is 39!
I told her of how dangerous that was. She had NO idea of all the related disorders except for the osteoperosis her mother has.
I told her it should be so easy for her, owning a restaurant and all. She could offer some gluten-free items and eat them herself while working.
She seemed concerned but not willing to change. How sad.

[angel_jd1]

To me, any situation where you can mention celiac disease creates awareness. Awareness of the disease is what we need more of. I'm not sure HOW it could be negative to create awareness for us as a group.

Talk about it, spread the word, lay out the brochures if you can't talk directly to the people.


-Jessica

[jknnej]

Our country has really gone backwards in terms of political correctness. That whole movement started out for the right reasons, but now you can't say anything to anyone and it's really ridiculous. I mean, what's the harm in talking to someone about celiac disease? They don't have to listen, now, do they? Especially if it's a stranger you'll never see again; who cares if they think you're nosy?
Unless it's a clear conflict of interest to discuss celiac disease with someone, such as the people who work for doctors, I think anyone has the right to talk about celiac disease whenever and wherever they want. If I worked for a doctor, I would hope he/she would be open to my discussing celiac disease with them. As a teacher, if someone comes to me with a teaching stategy I've never used, I will certainly listen, even if they're not a teacher. I realize, though, that you can't help who you work for and if you work for someone who wouldn't be that receptive, you shouldn't say anything because you certainly don't want to lose your job.
Other than those specific people, anyone has the right to say anything about celiac disease to anyone.
Political correctness should curl up and die. I am so sick of it.

[judy05]

BamBam,

You didn't say what kind of Clinic you work in so this
is just a thought. How close to the Doctors are you?
Have you ever dicussed how you feel? Maybe they
would be open to test these patients, are they aware
of Celiacs? Perhaps brochures for them would help.
As a nurse for many years I know some doctors
would appreciate this info, mine did when I gave him
a list of gluten-free meds. I also know some have such big
egos that they would brush this off. Just a thought.

[watkinson]

This is my first time on this site. I am fairly new, being diagnosed about a year ago. I have been sick my whole life, getting worse as I got older. Mostly stomache aches, diareah, body aches, and exema and rashes around my mouth and neck. I always thought I just had a "sensitive" stomache and skin. Doctors said there was nothing wrong with me and dermatologists said that the rashes were caused by (you name it) toothpaste, coffee, touching my face, whatever. At the age of 25 (during my 2nd pregnancy) things got progressivly worse. horrible neck and back pain, nerve pain, horrilbe, crippiling at times, joint pain, terrible nausea. I thought it was all related to the pregnancy, but nothing went away, in fact (of couse) things got progressivley worse. Starting about 7 years ago was when it hit full force. The stomach pain was so severe I would pray to God to please let me die. Joint pain so severe I could'nt walk at times. My elbows felt like they were chronically broken, thyroid problems, ect. ,ect.. Doctor after doctor didn't know what was wrong with me. I had every test imaginable (sound familiar to everyone?) Gollblator, lupus, MS, lymes disease, collon cancer ect. ect. I was finally told that I had IBS. The Doctor actually said "We don't know what causes IBS, but there seems to be some corolation between it and sexual abuse, so if you have any of that in your life you need to see a phyciatrist" The comment made me feel like he was suggesting that my problems were because I was nuts or something. I finally read an article saying that people with IBS seem to do better on a diet low in bread products. Trying anything, I got rid of it all, low and behold it was like a miracle. I didn't know why, I figured it was some preservative in bread or something. I took another 6 months before someone told me of a friend of there's that had the same symptoms and that he was diagnosed with something called celiacs, she suggested I look it up on the internet. When I read the symptoms and figured out this was what I had my whole life, I sat and balled my eyes out. So many years of suffering, so many doctors, tests, all of it could have been avoided if someone had just suggested a simple food allergy to me . I would give anything to get those years of my life back. I wish there had been a poster or something I could have read. The idea of literature in the office would have been a Godsend. You could save someone's life by handing them a simple pamphlet. I finally saw a doctor who knew what he was talking about, got the blood test and the biopsy and have been gluten free ever since. I am so thrilled to be well, to FINALLY feel great. Life is good I tell any one who asks or anyone who tells me of any similiar symptoms. soap box or not if I can help anyone to not go through what I did, I will. So PLEASE put up posters and speak up if anyone asks.

[stef_the_kicking_cuty]

Hello Watkinson,

welcome on this message board. Your story sounds really painfull and familiar. Shortly before diagnosed I also thought I get nuts and I wanted to die, cause I just didn't want to have pain anymore. I didn't actually beg god for it. I actually thought about crashing against a tree with my car full speed or against a wall or something. You are so right. I would have given anything for a brochure at a doctor or a hint from somebody or something. I hope you get all better.

Hugs, Stef