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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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mari-lyn

Professional Dilemma

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Not sure where to post this problem but I am sure there are doctors caving in to patients that refuse to go gluten-free. I am a dietitian working in a Critical Access Hospital ( that means we are a rural hospital with no more than 25 beds - our average patient count is around 8). There is a woman that has repeatedly been admitted with migraines, nausea and vomiting...also small bowel obstructions. She told me one year ago that she was diagnosed with celiac disease. Today, she said that she tried the diet for 2 months and gave up - it did not make her any better. She has given statements to her doctors (a new one about every 4 months) that it is not celiac disease. I called her GI specialist that did the initial diagnosis...just to get documentation. Yes, blood tests are positive and the biopsy was "suggestive" for celiac disease.

The current doctor is not ordering a gluten-free diet because the patient it telling her she will not eat it.

Now, if a doctor knew that a pill would be toxic to a patient ...would they give the OK to give it to her?

On another level I am very mad... that she is in denial...not only for her own health (she is 41)...OK...but her frequent ER visits and hospitalizations are costing lots of money. They did a CT on the head today ...

Ok, I am venting and frustrated but this process has helped me. I am going back to her (new) doctor who is very open to my comments, and present my case....let me practice..."If a pill caused your patient to become very ill would you continue to let her take it?.....

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I can appreciate how you feel, and it maddens me too.

But how do you make a person do what they should, when they obviously don't want to? Nobody can stand behind them 24/7 ensuring they do not eat gluten.Somewhere along the line they have to take responsibility for their own health, and unfortunately along the way it is costing the health system a heap.

Maybe the health system should treat her like a smoker who needs heart surgery, and until they give up their habit they are denied surgery, as it is considered that surgery would be of better benefit to a non smoker. It is harsh, but I think that is how they do it here in New Zealand. Maybe then, she may consider there are benefits in going gluten free.

Catherine

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No matter what the doctor orders or what diet you suggest - the only one with power in this situation is the patient. Perhaps instead of being angry and approaching the doctor with the approach:

.."If a pill caused your patient to become very ill would you continue to let her take it?.....

It might be better to provide psychological support. depression is common in chronic illness, esp disorders like celiac where this patient may not have family support or because of her depleted nutritional state is not acting rationally.

As a person who has had diabetes for 20 years I can vouch for the days where I just said - to heck with it and ate something decadent, sweet and not on my diet plan. It is hard.

It was harder still to adjust to gluten-free - esp for my kids. With diabetes - everyone recognizes it as "real disease", no one questions if I need to give my son or myself insulin. Very few non-celiac people offer support to the newly diagnosed and perhaps this patients' friends are dissuading her from believing the diagnosis, perhaps she is still in denial cause it is HARD to stick to the diet.

I would suggest some psychological support as the first step. IMHO

EDIT - as a dietician, have you ever tried a gluten free diet for a week or more, a diabetic diet? Try the diabetic, gluten free diet at the next staff party or at a family birthday, try setting out the menu for a 3 days camping trip where the gluten free bread options go stale after the first day.

It is hard and I am sure you have the patients best interests at heart plus it must be frustrating when you know a special diet would prevent many Er visits. Someone should find out why she quit the diet after 2 months, why she feels it cant be celiac, whats behind it....

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Yes, as a dietitian and also as a close family member with celiac disease (actually 4), I am aware of the problems and especially concerned with young people and teens. There support is needed...hope we can meet the challenge.

Just an FYI..the patient was referred to counseling ...with the added assurance that the Dx. of celiac disease was part of the Dx. Fortunately the therapist is open to dietary diagnosis.

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Good to hear - I hope they can help her and support her going gluten free so she can heal physically and psychologically ....otherwise she will be chronically ill.

Yes, as a dietitian and also as a close family member with celiac disease (actually 4), I am aware of the problems

Sounds like you would be very knowledagble - I am just giving "food for thought" - imagine , as of tomorrow -- you couldnt eat gluten.

Knowing someone with the disease is different than having it. A nurse knows how to give me or my child a needle...but does she have to do it to her child / see her child do it 3 times a day for 365 days a year?....forever..

you know about celiac, but if you were running short on time - you can stop at any fast food resturant without worrying about cc.

Again I hope she receives support from the counsellor

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Guest cassidy

Would she be willing to talk to a therapist? It sounds like denial is the problem. If she can learn to accept the situation then she should be more willing to try the diet. There has to be a reason why she won't listen to anyone telling her that she is causing her problems. And shame on the doctors that let her off the hook.

Also, if you are in a rural area she will work her way through all the doctors and eventually she will have a reputation before her first appointment. Hopefully, someone would be able to find out her test results and convince her the diet is necessary.

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Tell her if she continues to eat gluten, being a diagnosed Celiac, she will be used as a specimen to determine some of the damage gluten does to Celaics. :o

We would like a brain biopsy of course! The recent reports of dementia as a Celiac connection. ;)

Or just declare her incompetent for her own care and well-being. <_<

L.

It just figures an awful patient actually gets a caring individual concerned about her care. :ph34r:

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Wow, Mari-lyn, I don't even know what to say. That is a tough situation. But, I just wanted to say THANK YOU for coming on this board and taking this seriously. Unfortunately, many of us have encountered medical professionals, nutrionists, dieticians, etc that know little to nothing about Celiac, and what they often know is incorrect. (Even this week, I had a research MD at NIH tell me that doctors are hesitant to put people on the diet because it can be "difficult." Are you kidding me?! You have an answer and you are hesitant?!) So, I unfortunately don't have any words of wisdom, but just a huge thank you. It is so refreshing to know that there are people in the health care field who "get it."

I hope you find answers and please keep us updated. Welcome to the board--we are happy to have you.

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A big problem with our "cure" for this disease (gluten-free diet) is the fact that for many people it doesn't work WHAMMO! like a narcotic...in fact, it can take more than a year to feel a real difference. This can be really unfortunate for patients like this lady, who went on the diet for two months and felt no better. Understandably, she figured it wasn't the answer. It sounds to me like she needs more than just therapy. She needs education on the disease: the cause, symptoms, and particularly, the healing process. She should join this forum...or at least reluctantly peruse it... :)

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I think a lot of the reason some people get frustrating is that a lot of the tricks and tips of living a delicious gluten-free life aren't well-known. Maybe you could find out what things she's most missing when on the gluten-free diet. She may not realize that there are SO many options. A lot of people just think that the Ener-G White Rice Loaf "bread" that the local grocery store has (which has probably been sitting around for months too) is the only gluten-free bread available.

I don't consider my food choices to be limited at all. In the last few weeks or so we've had gluten-free versions of the following -

BLT's

PB&J's

Toast just about every morning.

Hamburgers with buns

Spaghetti

Fettucine Alfredo

Schnitzel (basically breaded pork chops)

chicken nuggets

biscuits and gravy

any gravy or sauce, by the way can be made by making a roux with gluten-free flour - tastes perfect

macaroni and cheese

Philly cheesesteaks on gluten-free buns

cookies

cake

crackers

pancakes

french toast

brownies

Cinnamon Rolls (Kinnikinnick.com)

We're not pizza people, but there are lots of people who are here, and everyone has tips.

I use Pamela's Wheat Free Bread Mix for all my bread and buns. (not the biscuits though, those were a mix). It's the best gluten-free bread in the world, in my opionion. My kids and I love it. The non-gluten-free people in my life also like it. Even my MIL, who always looks at the negative side of things first, made a point of telling me how much she likes it. :o My best friend told me that it just tastes like a different brand of wheat bread. She never would have known it wasn't gluten unless I told her.

With family members with celiac too, you might be interested in trying some of the things we on this board have discovered too. You could do taste testing at your next family event. B)

Hope that helps, and let me know if you want more information on any of the things I mentioned. Stick around and keep asking questions. Your future celiac patients will LOVE you for it. :D

Nancy

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Its good to know that the doctors care. However as human being we have the right to do with our bodies as we see fit. A good example that I will not discuss at lenght becouse I am prolife is Abortion. The doctor is not there to control us. They are there to advise us. I know this is the hard part of being a doctor. A doctor that was taking care of grandpas heart got tired of his neglecting his health and told him if he ripped out his stitches again (the 4th time) he would refuse to be his doctor. If the patient doesnt wish to be healthy that is thier issue. You have done the best you can. Thank you for doin a caring.

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My sister is a dietician in a 28 bed hospital. After she was diagnosed, then she could see the gluten intolerance in other patients. This one man, his name is Bob, was the person patient my sister asked a doctor to test for celiacs. She was correct and she taught Bob all about celiacs. He did great, he gained weight back, felt better than he had in years and was doing so well for 4 yrs. Then last spring she saw him and he informed her that he had decided he was no longer celiac. She, of course, adviced him to stay gluten free and that celiacs does not go away. He told her he wanted to eat good food again and he ate gluten. A few months later, Bob died of a massive heart attack, at 61. Now, did celiacs kill him--no way to know? But, did going back on gluten stress his body--I'm sure it did. Very sad, Bob was a customer of mine when I worked in Michigan. We teased each other everyday, I wish I could tease him again.

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Wow, Mari-lyn, what a great dietician and caring person you are! The health care profesison is lucky to have you aboard, and so are we!

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I would think, in this sue-happy day and age, her doc would ask her to sign a form releasing him of responsibility of complications of Celiac Disease when she refuses to follow the diet. I guess the "complications" term is too broad when it comes to us, but I'm surprised the doc isn't covering his butt.

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Wow, Mari-lyn, what a great dietician and caring person you are! The health care profesison is lucky to have you aboard, and so are we!

As a newcomer to this issue and this forum, I have recently read the Newbie tips, and what stands out in this situation with a patient in a probably rural area is the possibility that she has not received enough information regarding the incredible array of products we ingest that contain gluten. If this is the case, her failure to improve while on the diet may be due to otc drugs, i.e. for her migraines, and/or prepared foods with gluten hidden in the indecypherable ingredients, or licking the envelopes to pay her bills, or the toaster which is used for the entire family's toast, or the griddle she uses to make the family's grilled cheese sandwiches, etc. It is like a minefield for the uninitiated. Even though the dietician who wrote this is well versed, perhaps the doctor is only half versed, and has not advised the patient on the full extent of the problem.

It may be that if the patient's family members could be (and maybe they already are) included in the patient's care, by educating them to her situation and what she needs to look for and avoid, as well as giving them suggestions of gluten free recipes and substitutes to make the transition a team effort, and one that can be accomplished even in a small town setting that may not offer the resources available to people in a metropolitan area.

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