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radman

Why Go Through Endoscopy?

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Some of you folks are so blinded with anger and hate that you fall into the proverbial trap of lumping every member of a group together. Prejudice, group think, malice, it all springs from the same fountain.

Yes there is a major problem with the medical profession diagnosing celiac disease. BUT I am a victim just like you. I am 42 years old and have only now recognized my problem, and no other doctor figured it out. Should I be angry and bitter. Maybe. But I recognize the problem for what it is. Poor information. It is not greed, drug pushing, stupidity, God complex or any of the myriad of other nasty, mean spirited motives ascribed to doctors. It is ignorance, plain and simple. That's not good, but the fix for it is a lot easier- education.

Anyway, I realize that there will be no changing the hardened minds of many here. They will not be able to see past their anger and resentment. Their mind is closed to other perspectives. Hatred is a bad thing. Try to see beyond it and you may realize that all people are fundamentally the same, with good and bad in varying degrees, and not related to their color, creed, age, sex, or even their jobs. I have met many doctors that are horrible asses, and others that are truly angels. Just like everybody else.

AMEN.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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I believe it is termed the medical arts or the healing arts for a reason - as good as the science is, MDs don't and can't know everything.

Please forgive those who are lobbing such hate bombs on this site. I understand that you are a victim too, but in a very unique position of being in the medical field. I look at your joining this forum as one more step in getting celiac mainstreamed like diabetes and other diseases. It's come a long way since my dx. At that time celiac was thought to affect maybe 1 in 500; the number is now 1 in 133. There are more articles on celiac, more books and in general more knowledge, which cannot hurt. I was concerned about you "testing" yourself though. Not all of the ramifications of gluten ingestion are known, it just doesn't make sense to us to keep putting something in your digestive system that makes your body turn on itself.

I agree with your idea of going completely gluten-free to see just what was being affected by the gluten. Be patient with your body, it can take up to three months, six or even longer before any damage done is healed. But i bet you will be pleasantly surprised with more energy, better mental acuity and a leveling of moods. But also be careful of hidden sources - shampoos, toiletries and meds - OTC and 'scrips.

Annette


gluten-free since Oct 1996

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Guest nini

I sincerely hope that you don't think that I am one of those blinded by anger and hate. I have had some truly horrible experiences with Dr.s, but I also have had a few good experiences as well... I feel very strongly the way I do because medical incompetence nearly killed me and my child. I'm sorry if any of my statements came across as attacking you because they were certainly not intended that way.

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OK, enough of the hate talk. I understand how serious the bad experiences with doctors have been for some here. I really do.

Thanks Annette, I agree that we need to work to "mainstream" celiac. That should be the goal of us all. I too have seen Dr. Fasano's estimate of 1:133 in the American population. If this is anywhere close to true there are over 2 million of us in the US alone. As this is better appreciated think of how much better the lives of celiacs will become. Doctors will have this diagnosis high on the radar screen and test everyone with symptoms, and the variability of symptoms will be appreciated. People won't have to go through the hassles (and worse) that so many here have had to endure. We'll learn more about the magnitude of the risk of various secondary effects like osteoporosis and cancer, and we'll be informed and tested and given practical ways to prevent them. And we can expect to see restaurants with broader gluten free offerings, and large gluten free sections in regular supermarkets, etc. etc. Maybe the fast food workers will even stop laughing at us for asking for a burger with no bun :lol:

Yes, this is a worthy and very achievable goal if the numbers are accurate. And my sense is that it is beginning to happen already. My advice is to try to educate the doctors you see in a gentle way, without the hostility. Some will brush you off, but some will listen; maybe they'll read the article you leave for them. Or talk to the nurse and give the article to her. She can bend the ear of the doc later. Send thank you letters to the good (or even moderately good) doctors who do try to help, positive reinforcement usually is more effective than negative. It is a process, and we can all help to speed it up.

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I had an endoscopy. Part of the reason I did it was so that I can write off extra cost of food on my taxes. What can I say, money talks. I also *had* to know. I know you can have false negatives, but given the results of my bloodwork, I knew going in what the result was going to be. I have a baseline now as to what my disease was like, so I can see if I am healing or not. My next endo is in June, I'm interested to see what the results will be. I would have no idea if I got cross contaminated. I just don't eat out if I can avoid it, and I stick to the fruit salad most of the time.


LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

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Some of you folks are so blinded with anger and hate that you fall into the proverbial trap of lumping every member of a group together. Prejudice, group think, malice, it all springs from the same fountain.

Yes there is a major problem with the medical profession diagnosing celiac disease. BUT I am a victim just like you. I am 42 years old and have only now recognized my problem, and no other doctor figured it out. Should I be angry and bitter. Maybe. But I recognize the problem for what it is. Poor information. It is not greed, drug pushing, stupidity, God complex or any of the myriad of other nasty, mean spirited motives ascribed to doctors. It is ignorance, plain and simple. That's not good, but the fix for it is a lot easier- education.

Anyway, I realize that there will be no changing the hardened minds of many here. They will not be able to see past their anger and resentment. Their mind is closed to other perspectives. Hatred is a bad thing. Try to see beyond it and you may realize that all people are fundamentally the same, with good and bad in varying degrees, and not related to their color, creed, age, sex, or even their jobs. I have met many doctors that are horrible asses, and others that are truly angels. Just like everybody else.

There's a lot of frustration here that you haven't tuned into. I doubt if anyone here lumps all doctors into the same category. I myself have a perfectly wonderful doctor who told me right off that I knew more about celiac disease than he did. And I guess he didn't have time to research it since he's a GP and I would have needed a specialist like a gastroenterologist, so what's the point. I stepped into a local gastro office where I'd had a colonoscopy last year, and my queries quickly revealed they hardly knew a thing other than the outdated textbook stuff. That's why I decided to save my hard earned $$ and research this myself, and I got myself tested as well by Enterolab, which is also mostly unknown and unrecognized by the broader medical community. More than anything, I'm just sad that things are as they are, and to tell you the truth, in most medical issues I feel quite alone in the wilderness. Doctors seem too locked into their medical groups, are too busy to really spend much time with each patient, and are as frazzled as anyone else trying to keep up with it all. As one doctor somewhere wrote, doctors tend to know about the conditions that have a drug to treat it...because the drug reps are always coming in and refreshing their memories about symptoms and treatment of choice.

Celiac disease involves no drug, its only treatment is diet, so it gets forgotten, and that's the sad fact of it. We with celiac disease have to continually be our own advocates in this. We're quite alone out there except for the internet's wonderful gift of allowing us to communicate with each other. Forums such as this would be an incredible gold mine for any enterprising doctor who wanted to contact celiacs and do some sort of big study on the whole thing. Here we all are, with lots of stories to tell, lots of really valuable input, but no one is interested (except us!).


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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