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BamBam

I Work In A Clinic

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I work in a clinic and because of all of the confidentiality rules, I am at a loss in what to do. There are dozens of people coming into this office with symptoms that I would love to recommend that they try a wheat free diet. But I can't say anything, because I am not supposed to know what they are coming in for, but I want to say something so bad. These people have chronic diarrhea and all of the symptoms that I have suffered with for many years. I love my job and of course do not want to put that in jeapordy.

BamBam

;)

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I think it's good that you don't say anything to them and respect the laws. I like when someone in an office/clinic knows what I am in for when they shouldn't and talks to me. Maybe you can talk about the signs of Celiacs to the poeple who can tell them? Or even put posters around the clinic about Celiacs or pamplets on tables?

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I totally agree with what was said by MySuicidalTurtle. It's definately good you are obeying the laws. Putting pamplets out or talking to someone with the authority to talk to them are awesome ideas. Posters around will also get peoples attention whatever catches their eye and can alert them about the possibility will be good :D

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If any of you know of a source for good pamphlets or posters, please post them here. I'd love to share them with family and friends as well as my primary care doc.

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Friends of Celiac Disease has some great phamplets. They are not too overwhelming with information. They are great to give out just to "inform" people.

The celiac sprue association also will mail you phamplets for free.

You could always make your own phamplet with information that YOU think is important to know about celiac disease.

-Jessica :rolleyes:

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I also think it's a good idea that you are respecting the laws.

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Funny I should see this today... I work for an insurance company and am handling a claim for a person with diarrhea, unexplained weight loss, bloating, etc... and the doc's done lots of blood/stool/urine tests... all neg. of course... and I'm thinking... WHERE'S THE CELIAC BLOOD WORK?? It ain't there... and, of course, there's nothing I can do!!

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Guest PastorDave

Hi guys. I have to admit I personally have a pet peeve when people try to diagnose others. We don't all have the same symptoms, all the symptoms we have could be literally dozens of different things (that is why it is so often misdiagnosed). I understand that celiac is more common then the medical field has realized, and I understand that many of you have been burned by misdiagnosis and want to help others, but I have seen so many people so desparate for relief that they go gluten-free without asking a doctor, or finding out for sure, and who knows what that might do. It's like when my mom was diagnosed as lactose intolerant, without any tests. She just went off milk...still ate lots of bread. She actually felt OK for a while because she thought she was better. But she was still hurting herself.

I know I am usually a lot more lighthearted about Celiac, I think that is the best way to deal with it. If I can use this as a soapbox for a second, I also use the fact that I have a hope of ressurection through Jesus, a ressurection with no Celiac Sprue, to deal with rice bread that looks like it belongs in my kid's toy box. (That "Pastor" part of my name is actually my title)

Anyhow, I think it is best to trust in the medical professionals to help others. If someone asks...you know..."you work in the medical field, what do you think"...then tell them. Or recommend they talk to thier doctor about their problems and ask about sprue.

Ok so I know some of you will disagree with me. Please feel free to, I know I am not always right, and your circumstances are different. Bam Bam, don't feel I am picking on you, this has been bugging me for a while, and I probably should have started a different discussion, but I just started and got carried away.

B)

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I didn't know about celiac until a woman suggested I look into it. Now, here I am, a year later, with a positive biopsy for it. Because someone brought it to my attention, and I was able to research it before the test, I knew more about what to do about it than my doctor did. Put out pamphlets in the waiting room. People will pick them up and read them, some out of boredom, some that just want to know what it is. If they have any questions, they can then ask their doctors. It would be the same thing as the ads on tv about different drugs. No diagnosing, just putting the info out there for others to read.

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I agree, Dessa,

It's not that we are trying to be armchair doctors here. We are all aware that the medical establishment by and large is quite unaware of celiac, thus the large number of population that remains undiagnosed. I don't agree with those who take the approach, "Well, I know what is wrong with you..... yada, yada..." but I see nothing wrong with putting the posters I suggested above or some pamphlets to be available in the waiting room. Then, the onus is on the patient to broach the subject with their doctor, thereby hopefully pointing their doctor in the right direction which otherwise they would not take.

When confidentiality is involved, it is a fine line to walk. But by making the information readily available to the patient in the waiting room, then all we are doing is arming them with as much information pertinent to their symptoms as possible.

Have a great day!

Karen

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Yeah I don't like to try to diagnose people but I like to give them information so they know about it and the symptoms so they can be aware. People need to be aware of things so if they do have it they can catch it sooner rather than later :D

Pamphlets are a good way to get info. across. I know when I'm waiting in the doctors office I get bored and read things. Good luck :D

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Guest PastorDave

I know I am coming across as a big advocate for doctors (even though I have good friends who are docs) but actually doctors have known about celiac sprue for a long time, however it had been thought to be very rare, and a "childhood disease". I have no problem with putting out information about it, in fact I was happy when Reader's Digest listed it among the top ten misdiagnosed problems. That allowed people to understand more about it. I am all for education. Just remember that celiac is among the thousands of things that can go wrong with our bodies and doctors can't understand all of them (why I go to a gastroentologist (sp?) who is a specialist instead of our family doctor) and don't have the room to put out pamphlets on every one of them either. We want people to be fair with education on our problem...we need to be fair with education with other problems too.

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The blood test for Celiac is SO easy and simple. I believe any doctor at ALL who has a patient with all of those symptoms should give them a simple blood test for Celiac. How else could they even consider themselves a medical professional?

i agree with Bambam. We're not suggesting these people go gluten-free or get an endoscopy. Just get a blood test.

Aren't you supposed to get a diabetes check every year? Cholesterol? This should be no different.

When I meet people who confide in me that they have tummy troubles, I always suggest the blood test, NOT the diet. this is not trying to diagnose people; rather, it's trying to point them in the right direction. We don't think everyone has celiac disease; but everyone who has tummy troubles that can't be explained should definitely be tested. There's nothing wrong with suggesting that. You never know who you can help. I'd rather help ONE person realize they may have this than piss off a couple of people who didn't care for my suggestion.

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When the awareness of Celiac Disease spreads then more people will be tested for it. Most symptoms can be explained by something else and it takes awhile to think of a food "allergy." Just because the test is simple doesn't mean finding the thing to test for is. That's why it takes people years to find an answer.

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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.

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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.

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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.

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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 ;)

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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.

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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.

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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.

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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 :rolleyes: 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!)

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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.

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    • If someone is doing an elimination diet and not having dairy for a while, would I still be able to eat some cheese since it is low in lactose? Or is best to give up any and all dairy during elimination trials?  Oh,and for cheese, I think it was the Cabot website for hard cheeses that mentions almost all theirs is gluten free. But sounds like most cheeses are.  Still, it can be nice when the company's website mentions it. 
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    • As your vitamin d and iron levels are low it suggests celiac disease because if I am not wrong ,your iron levels is low without any reason.  To rule out confusion you should go for celiac gene test. Because if your gene test is positive then you should go for  biopsy of small intestines to confirm the diagnosis about celiac disease.   I also have heaviness,nausea and various other symptoms I am on gluten diet since one year and my gene test is positive for celiac disease and symptoms also suggest.  So, according to my knowledge your all symptoms will get better after you start gluten free diet if you have celiac disease or gluten sensitivity.   Best of luck! 
    • I would avoid those "noodles" starches = gas right now.
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      Soups, during flares, I find using meat and herbs to flavor them best, I got a Pots de Herb blend that is nice from The Spice House, tested gluten free for me. But gentle herbs instead of spices...think of Italian and french cuisines. Bit of oregano, basil, rosemary, thyme, etc. Avoiding peppers, spices, and going very limited to no garlic and onions. Funny fact they make bonito flakes (dried fish) like Eden Foods, that makes a good fish flavoring if you boil them into water. Not now but later you can do this with coconut secret aminos,  wakame, or kambu for a asian fish stock for soups.

      I would seriously suggest trying eggs...they have been my savoir for flares, I just cook them soft with almond milk in them in a microwave so they are moist...and soft.

      I treat myself about once a month with either canned tuna, salmon, or millers crab meat (the real stuff), I found the crab easiest to digest and a super strong flavor in soups or with eggs.

      But again step back and say "I will try this for the first week" "Try this the second week" etc. Step by step on how you will try stuff, I know you want to jump to it and try to see what all you can eat but you have to space it and take it every few days for your testing of yourself to be accurate.

      Simple foods, the fewer ingredients the better, give yourself a low single digit number and stick to it so you do not get overwhelmed.
    • I think turkey would be great!  I am sort of thinking you might just want to do a sort of bland diet - as if you were getting over the stomach virus.  So a simple chicken soup with some cooked veggies like carrots and green beans or peas - you can then put it over rice or rice noodles if you want.  I like your idea of staying away from dairy, etc.  You can do that for a few weeks.   Grill the chicken on the grill or cook with a little olive oil in a pan - you can get a nice brown on the outside that adds a lot of flavor.  then put  little water in the pan and boil it and scrape the bottom and dump that in with the rice or veggies that are cooking.  You can throw that chicken in your soup/ rice.  If you cook fresh spinach in things - it can add a lot of spinach flavor.   I think cooked fruits or veggies are usually the easiest to digest.  But really keep it to a few things for a couple of weeks then add then when you are feeling a bit better.
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