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I couldnt find any other space for this....Im leaving...I think this communtity has gotten a little more like a way for people to use their might than to help others...I thank all the people who helped me along the way and I seriously hope your quality of health improves for you and your families. I am sorry that I was unable to help many of you. :(

-"It is better to burn out than to fade away..."

-Kurt Cobain

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:( Wow... thats a bummer and I'm sorry to see you go. I know that my son has been saved several times from potential gluten "accidents" from these wonderful people, so I hope that you will at least come back now and then to check out the information, new & old, even if you don't feel the need to communicate.

Good Luck, and take care of yourself.

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Guest TESTinME

Huh, I think this forum is getting better as time goes on..

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I'm a bit disappointed in the board too...there is alot of doctor -bashing going on , and alot of misinformation being spread around by non-experts. I'll be on the recipe and baking tips forum only from now on.

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I haven't seen any doctor bashing on this board. What I have seen is many individuals sharing their own individual experiences with physicians. It can be ugly for some people. They are sharing their frustrations and problems, which is exactly what is board is all about!!

As far as Mis-information goes.....people are free to put in their two cents to try to correct mis-information. That is yet another purpose of being here and being involved.

We are here to listen to each other and support each other. Those who do not wish to do this are free to go. It is really a shame that they can't be supportive of fellow Celiacs.

Just my two cents.

-Jessica :rolleyes:

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If you are seeing something bad, speak up! Just how does anyone on this board have any "might" over any one else? I am glad for this board, because it gives me links that I wouldn't otherwise have found. I haven't yet spoken to my doctor about having celiac disease or intolerance, I want to get the test done at Enterolab first. People are just telling how bad their doctors have been, and giving advice on how to find a good doctor. I'm sorry you are leaving. Come back if you need to.

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Guest jhmom

I do not consider us talking about our experiences "Doctor bashing". Unfortunately some doctors out there have a hard time diagnosing this disease or are quick to dismiss it and WE are the ones that suffer because of this.

People come here because they want answers, they ask for our opinions by asking us if "we" think they have celiac disease. None of us are doctors nor do we pretend to be, each of us are simply telling our own stories, there just happens to be a lot of us that have had trouble with our docs.

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This board helps me stay sane. I'm sorry if I've ever come across as bashing doctors, it certainly wasn't about that. Unfortunately it is true that there are alot of doctors who still think celiac disease is only thin people, scandinavian people, short people...they are learning and that is great.

I haven't read anyone forcing or trying to intimidate anyone else either.

I guess I feel that if we have been through the first rough time of diagnosis and have found certain spots not to walk on because they fell through for us, then we should be able to share that experience so that the people following along don't step on the false spot...they can get further ahead faster and not waste the same time that we did. If that's being a pushy quack or a doctor basher, then I guess that is what it is.

And yes, if you feel things are out of line, you should be reporting those things to the moderator.

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Yes, I am doctor bashing and I am not apologizing for it! Doctors are arrogant and quite smug when you tell them that you disagree with them. They are not God, although they think they are. I have been let down by so many Gastros I can't begin to enumerate them! Shame on them. Shame on the last doctor who told my husband that his disease was all in his head - that I left that doctor's office in tears!!!! Shame on him for hearing all of the symptoms -- with me telling the doctor that I felt my husband had a malabsorption problem, giving the doctor the celiac disease answer -- and the doctor couldn't swallow his pride and give him a celiac disease antibody blood test!! He just got angry with me! Shame on the doctor, not on me!!!! Shame on that doctor for not digging further into the problem. I have a copy of the records from that medical group, I read where he thought the problem was all in my husband's head and that my husband "just wanted to hear from the doctor that he could eat offending foods again." IBS/colitus was the diagnosis. But it was wrong. The first doctor over 25 years ago said the same thing, but it was wrong. The second doctor gave the same diagnosis, but it was wrong! The THIRD gastro gave the same diagnosis (the one who made me cry) and HE WAS WRONG!! And I have to go along with this and not say anything!!?? That's idiotic! Right is right! So message board drop outs do what you want, but keep in mind that doctors are playing with peoples' lives and families and consistent misdiagnoses combined with arrogance and smugness should not be tolerated. And I for one will expose them when they are wrong and self righteous about it.

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I have celiac disease and guess what, I AM A DOCTOR TOO! I also didn't get the correct diagnosis for about 15 years. But I also know that the symptoms for celiac disease are incredibly vague, and that there is a HUGE variability in symptoms, depending on the person. I'm sorry that you've had bad experiences with your doctor...but don't badmouth the whole lot of us. It's true that many of us don't know much about celiac disease - it hasn't gotten much attention from American docs until recently.

I'm sorry, but I am not arrogant and smug - just ask any of my patients. I take my profession seriously and I know that I don't know everything about every disease - it's impossible to do that. I just know that when I don't understand something, I ask for help from the specialists, and I do some research on my own. I trust my gut feelings, I listen to my patients (and their parents, since I'm a pediatrician), and guess what - sometimes I'm wrong - hey, I'm human too...but I don't intentionally make mistakes.

I also cringe when I see lots of people on this board asking and giving medical advice - they are only using their own personal experiences to draw from, and unfortunately, many times it may not apply to everyone else. I want to jump in and correct people - but I can't...it's too big a job, and it puts me at huge risk for liability.

I really dislike it when people make huge generalizations about large groups of people (like doctors, for example)...it's just as bad as making ethnic jokes.

thanks for letting ME vent!

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Sara,

It's nice to have a doc on the Board (and do you own a Bichon also? we have a sweet Bichon puppy named Rosy). You are probably aware that all children in Italy are screend for celiac by age 6 (Healthlink article by E. Early) - I'm wondering if you have the ability, especially since you are a ped doc, to screen all your patients for celiac? I'm curious as to how many hurdles there would be for you to undertake a project like that in the US (and my apologies if my assumumption that you're a US doc is incorrect).

Italy's socialized medicince encourages medical decisions / policies that consider future costs (not just annual costs, which is how our increasingly corporate health care system works). Sigh.

Laurie in Seattle

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Sara,

I appreciated your post! It is easy for things to get out of hand on a public board like this one in terms of giving and receiving medical advice. What I have found is that physicians serve a very important role in healthcare when it comes to diagnosis. In the states, medical treatment is often limited to medication and surgery. Few physicians are well trained in nutrition, or any forms of alternative treatments. As patients, we are responsible for researching any conditions we may have and what available treatments there may be. Medicine is not an exact science and you are right...you just cannot know it all. As a nurse I always urge my patients to take responsibility for their health--not to depend on a DR to "take care of them". Our society has shifted DRS into some sort of super-being category, and they are not super-beings. For the most part what they are is very dedicated, hard-working, well educated people who do the best they can for thier lot of patients. I mentioned that I am a nurse, and I must say that before my own ordeal started I knew very little about celiac disease. Nurses are held accountable for knowing a vast amount of medical knowledge (much of what an MD must know), we do not diagnose or prescribe treatment (unless properly credentialed), but we are legally obligated to have an understanding about disease process and various treatment modalities. Unfortunately, like physicians, our training is often left wanting in the areas of nutritional counseling and alternative therapies---this is improving ever so slightly I believe for both nurses and MD's. We have a long way to go. In the meantime, I am trying to step out of the box if you will, and expand my knowledge base in order to serve my family, myself, and my patients better. It sounds like you do the same Sara--kudos to you!

Karina

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I think it would be great if Sara would set a standard for doctors all over the U.S. to become educated about topics that fall between the cracks. That would be AWESOME!!.

However, we still can not overlook the fact that many people on this board have gone through HELL to get diagnosed. The point of the board is to be able to share information and experiences. They should not be reprimanded for doing so.

So ......if you wish to continue living in a hole and ignoring the fact that doctors are missing the diagnosis on Celiac disease, then please feel free. However, if you wish to make a difference for "your medical community" and educate those doctors around you, so they stop missing the diagnosis then YEAH!!! I applaud you for your efforts.

But please do not come onto the board and act as if these people here don't know what they are talking about. They have lived through the experiences, they are not making up the information. It anything I would think it would be a RED FLAG to the medical community to make some changes.

Bad things had to happen in order to make people feel this way about doctors, maybe doctors need to take notice and figure out a way to change things and build trust and respect again with their patients.

-Jessica :rolleyes:

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Guest TESTinME
I do not consider us talking about our experiences "Doctor bashing". Unfortunately some doctors out there have a hard time diagnosing this disease or are quick to dismiss it and WE are the ones that suffer because of this.

People come here because they want answers, they ask for our opinions by asking us if "we" think they have celiac disease. None of us are doctors nor do we pretend to be, each of us are simply telling our own stories, there just happens to be a lot of us that have had trouble with our docs.

I agree. My frusteration with doctors is they like to label you, give you a script and send you on your way. I was told I had IBS and should just learn to live with it. That is a cop-out diagnoses in my opinion. Your bowel doesn't get irratible for no reason, it is due to something you are ingesting. I had to figure out my celiac's on my own and when I stopped the wheat, my symptoms went away.

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I can see both points. I have family members who are in the "medical community" and still more friends who are docs or nurses. Added to that I also have several friends who are diaticians, and these are actualy the ones who, I feel, get shafted the most. Because people think that the diaticians should be the most educated on every nutrition related disorder know to man. But the truth is, that the diaticians are trained more to deal with folks who have diabetes or cardiovascular diseases, all other disorders take a backseat.

Personally, I think this is ridiculous. Why should any nutritional disorder be less important than another? It certainly isn't to the person who has the disease. Just because diabetes is more commonly diagnosed, doesn't mean that it's more common. I feel that it is no fault of the diaticians, or the doctors, that their schooling doesn't give the educational attention to celiac disease that might be necessary, but try and remember that there are probably hundreds of other diseases and disorders that are also overlooked, and the folks with those disease aren't any less important than we are.

What it comes down to is that doctors aren't super-human, and that's okay. What's not okay, is to ignore a patients feelings or suggestions, because then you may as well be telling them that the problems they came to you for in the first place, don't exist. And if "some" doctors are unwilling to trust that the patient knows their own bodies, then they shouldn't be doctors.

I have a great respect for doctors because their education and willingness to help people is absolutly essential to the well being of the world, but we can't forget that they are human, and entitled to some mistakes now and then. We also must remember that it is far more likely for people to talk about the bad stuff that happens than the good stuff, so for every "bad doc" story you hear, there are probably one or two "good doc" stories you don't.

And I'll leave on this note.... My son's doc is FANTASTIC! While, as a parent, I can say that the diagnosis took a little longer than I would have liked, he did make the correct dx, and since then has been more than willing to learn, along with us, and research and educate himself and his staff, so that he can better serve us and his other patients in the future.

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Sara: Don't take the doctor bashing personally as you're probably going to see a lot of things on this board that will make you flinch as a doctor. Remember, you are entering into the layman's world and you are getting a first hand look at the other side of the waiting room which you don't see. You have a rare opportunity to discover what makes a patient leave a Dr. and how patients feel about how a doctor treats them.

I never relied on the doctor's knowledge entirely, but we've been to four gastro specialists, not G.P.'s - Gastros -- but how do you as a lay person know a disease exists when no medical references speak of it? If the internet existed 28 years ago when my husband first came down with this, I would have gone on internet. But that's why I pay the physician to diagnose, not to talk down to me and make me cry. I pay him/her for his/her time to analyze & research the problem, not just to run tests and tell me you can't find anything. Due to this exchange of payment for services, the doctor owes me the responsibility of his utmost best performance. Of course not every doctor knows everything, but I expect a trained gasto, who practices in a prestigious group here in NJ, to know something about celiac sprue, especially when I am giving him hints!! I it my understanding that the blood test for gluten has been around since about 1989. Why didn't the gastro who saw my husband saw in 1993 add that as a test if the upper & lower GI's & sigmoidiscope didn't show anything? Why didn't he at least give my suggestion about malabsoprtion a whirl? It's obvious why in light of the tone of voice he used with me.

The Mayo Clinic reference book that I picked up last year has a piece about celiac disease in it and this book was published in 1990. But even that book doesn't tell you the whole picture.

Due to the time lost in diagnosing this disease I have been cheated out of a healthy working husband, a family (couldn't afford to have children) , a house and all the other perks that healthy people take for granted. Because of that little misdiagnosis I have had to support the both of us on my secretarial paycheck for the past 25 years. I have endured the stress of a sickly husband and knowing that we were one paycheck from being homeless.

In addition I find out now that my husband has a greater chance of having an intestinal lymphoma due to undiagnosed celiac disease. I have been to hell and haven't come back yet. And if you think for one minute that I am angry you are 150% correct. I think I have a rght to be angry at those doctors. No one has a right to tell me how to feel. I feel as I feel. And I speak as I feel.

You are presuming that all doctors utilize due dilligence because either you perform due diligence or you are imputing your diligent behavior to them, where they have none. I am on the other side of the fence telling you that in my experience your colleagues they are not performing up to snuff where celiac disease is concerned. If they were, you would not be reading everyone's horror stories.

Now I've said my piece and hopefully have provided all on this board with at least a small explanation of my world. For health care professionals on this board, please take the word of those with similar testimony and disseminate same to your colleagues and tell them that we are holding their feet to the fire so that they get it right the first time.

Please forgive me for sounding so harsh but I feel so hopeless and feel that no one in the medical field, with the exception of my husand's new gastro, really gave a rat's petunia.

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To all,

I too see both sides of the situation. I cannot see getting angry about it all. Before I found I was a celiac, my mother suffered for three years until they finally diagnosed her. She went to 3 or 4 different gastros along with other specialists that concluded that most of what she was going through was in her head. When I had my first major celiac attack, prior to being tested, I went straight to the emergency room. And, if you guessed, a misdiagnosis. I blamed the doctor at first, but I looked at it and decided who I really was angry with, the American healthcare system. Doctors are just like cashiers that can sometimes miscount their monies at the end of a shift. Definitely, more serious, but human error is and will always be. So their knowledge is not going to be all and knowing. To the doctor that replied, how dare you critique the info on the site. Eveyone knows that all info received should be looked at objectively. Especially every celiac, that vary as much in age, race, and symptoms. Quite frankly, combining all our info together, most of it can be quite helpful. How can you defend in one breath doctors have not advanced enough in celiac info, and then turn around and say you are shocked by some of the advice given on this site? I think that this is great because of its support, support that cannot be given by doctors due to the health system that employs them.

~No negativity, lets remember it is about support.

gluten-free since July 03

Richard

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This discussion is perhaps the most valuable on this board - for both sides of the issue! As debmidge mentioned, the doctors are able to see from this discussion what the patients feelings are. But also, we must understand the position of the doctors as well.

I spoke to a GP recently who stated that to the best of his recollection, throughout his entire time in medical school, less than 30 minutes was devoted to Celiac Disease! It seems to me that if we want to be mad at anyone, we should be mad at the medical schools! Especially since this is where a significant amount of medical research is performed in this country!

My symptoms were present for at least 15 years. Like almost everyone else, I was diagnosed with IBS. 2 years ago, I asked my GP point blank if he thought I had Celiac Disease after I had read something about it on the internet. He said no, if I had Celiac, I would have blue teeth, three knee caps, and excessive nose hair! :P OK, I'm exagerating! He basically assigned symptoms that he had seen in another patient he had who did have a Celiac diagnosis to all Celiacs. Of course, we all know, symptoms vary in this disease. Some patients are even asymptomatic!

Finally, because of terrific heartburn, my GP referred me to a Gastro and I was diagnosed with Celiac after an endoscopy. Did I dump my GP? No. Am I mad at my GP? No. Why? I've been going to this GP for several years. I find him to be very thorough and diligent. I also find him to be very competent in most areas. That he missed a diagnosis only makes him human - not evil. Also, there is much more to my body than just Celiac Disease and I trust him with more than just Celiac Disease.

The other side of this discussion has a valid point that these forums provide a valuable service in providing information and support that many patients may not be getting from their medical professionals (especially in those 5 minute office visits!). Furthermore, I agree that there is a definite problem with arrogance in the medical profession. Another shortcoming of medical school I believe.

Having said all this (sorry it's so long), I absolutely appreciate all the discussion thus far on both sides of the issue. Although there are strong emotions coming out, it is a healthy discussion that we can all use toward a common goal! I think (and hope) that these emotions are not meant in a personal manner directed at anyone in particular, but rather as a means of conveying frustrations. :)

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I spoke to a GP recently who stated that to the best of his recollection, throughout his entire time in medical school, less than 30 minutes was devoted to Celiac Disease! It seems to me that if we want to be mad at anyone, we should be mad at the medical schools! Especially since this is where a significant amount of medical research is performed in this country!

I agree with this. Most of the doctors that I have had problems with are gastro doctors who didn't think I could possibly be Celiac since I did not fit the symptoms (that they had learned in medical school) exactly, or I wasn't exactly like other Celiac patients of theirs. They did not like ME telling them what I thought about my own body!

But on the plus side, I have found a few really good doctors who do know a lot about Celiac and they are newer doctors, so maybe they are spending a bit more time on Celiac in med. school... or the doctor just chose to learn more about it. Doctors can't be experts in everything, but you would expect a gastro doc to be informed on the subject. I am not angry at the doctors who misdiagnosed me for over 26 years, but I am disappointed that I did not have the quality of life that I could have had if I had been diagnosed as a child. I am very glad to have pushed for testing for my children and I do hope that their doctor will be able to support the diagnosis through Enterolab since we were not able to get the testing he had wanted done through Prometheus. I would like for my children to have the follow-up care that they deserve to get, and for the doctor to note their progress.

It helps to have the same doctor for many years as they get to know you and trust you. I have found that some of the doctors that question my judgement are doctors that I have not known before. Why should they trust me? I could be making up the symptoms or just wanting attention. Some people do that. Most Celiacs are either labeled IBS or hypochondriacs. When a doctor knows me for a long time they listen to me about myself and my children and they trust my judgement. They let me participate in deciding what tests to run and how treatment should be handled. I think that is as it should be, but the doctor has to know you for a while.

God bless,

Mariann :)

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I kind of feel as though I'm walking into a lions den here, but I thought I would step in with the medstudent point of view. I have to admit that they probably didn't spend more than 30 minutes on celiac during my gastro course this year... however... if you think about how many diseases there are out there and the fact that we have only 4 years to learn all of them (and only 2 of those are in a classroom) then you have to figure that it is getting its fair share of lecture time.

For better or worse, it is the doctors who are in hospitals now who teach the medical students which of the 6 million diseases we learn about in lecture actually exist in real patients in the clinics. And since many of them never learned about celiac, we don't get to see their celiac patients because they don't think they have any.

This is not a defense, but I just thought I would say a little something about the way medical training works. It makes for slow change, but with all the new research out about celiac disease and with patients being more proactive, it pushes it further into the forefront for docs who can then share with their students.

Now my medical school class, with 2 gluten intolerant classmates, are all getting a firsthand education about this, which is great! And several of my classmates have asked for personal tutorials on my symptoms and other ways the disease can present so they can learn how not to miss it in their patients. In short, we really do care about learning as much as we can to help people. Promise. And while there is no way to get back the many years that too many people have lost, there is hope that it will get better.

Heather

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Heather,

Thank you so much for that very sincere post. I am not in the medical field, but rather the restaurant industry, which in some sections on this board can take quite a bit of heat as well. But I do appreciate what everyone has to go through, on both sides of the issue. I pride myself in being able to sit back and force myself to look at things objectively, and I am glad that this discussion has been such a "hot topic" on this board. I think its important to discuss experiences with each other, I just want to stress that it's important to talk about the good times as well as the bad.

I am not trying to patronize anyone who has had negative expirences, I just don't want it to dominate our lives, or the board. I think life is too short to dwell in the past. And certainly its unfair to alienate an entire group of people because of the mistakes of a few.

I am extremely sorry for those of you who have had troubles with your dx's, and I agree with Heather that since there is no way for us to regain the years that we may have lost being sick, the only thing to look forward to is that it is getting better. I hope that now that we have made it this far, we won't waste anymore years, months, days, minutes being angry at people, doctors, diaticians, (or chefs HA!) and instead will concentrate on being glad that we do finally know. And from now on, we can look forward to healthier futures, rather than spend our time resenting the past. Love life for the gifts it brings, don't hate it for things it takes away.

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So, it seems to me that maybe there can be a way to encourage our physician's(those that are still speaking to theirs)to consider celiac disease as more of a front-line answer rather than a last resort. My own doc did say to me, "oh, so this is something you read about somewhere and now you think you have it?"...but my daughter'd ped was wonderful. He always is. He listens to people, he blows the clock, takes his time, and follows instinct also. He has NEVER sent me out of his room hopeless. He is a gold standard also, as I suspect you are Sara. I appreciate this man and am eternally grateful to him. As for my own doctor, I am trying to switch to an internist in the clinic who is of the same ilk as the ped. That I can't help. I don't trust him with my best interests anymore. I was so sick all last fall, not just gastro stuff, my whole immune system was crashing and he got to where he would just roll his eyes when he saw who was in his office again. He is not the general doctor public, I know that.

And a good friend of mine, that one that i think is celiac, she's a PA. But celiac is NOT something that she considers a viable diagnosis. She is much more oriented towards treat the symptom.

My question then, for all of you medically involved celiacs, what can we do? As a group, as individuals...knowing the profession and the possibilities for change, and taming our cynical, hurt and outraged selves, is there anything, anyway that we can take our hellish experiences and turn them for good? I really don't feel noble, so don't hiss at me, but if there is someone that I can help NOT lose years of living by raising awareness, then I want to do it. Talking about it to people I see suffering is not helping, they all turn to the medical profession for diagnosis.

Deb, I'm so sorry for your hurt. It is valid and I am sorry. You have suffered so much, and I appreciate your point of view as a spouse recovering from a disease you don't have yourself. It makes me sad I can't get my years back, but man, i'm so glad my daughter got diagnosed at 16, rather than 39, or 50, or 62...and my little one at 6, rather than 16.

Teresa

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To all

I think this section's topic is about how we are coping. I speak for my husband because he is too depressed to get on this website himself. I ask him to write for himself and he says "you do it, you know how I feel."

Part of the coping is what our experiences are in everyday life and that includes how doctors inact with us. I use the collective "us" for both my husband and myself as we are a unit, we are married 25 years this year.

For Heather, the young person in medical school who is celiac, I am sure that you will perform better than average for the celiac because you already know the "monster." But I do have a question for you, do doctors have continuing education requirements in order to keep their medical licenses with the state? I've always wondered about that.

When a doctor gets to the point of rolling his eyes when a particular patient comes into his office because he thinks the person is a hypochondriac he should quit being a doctor. His purpose in his profession is to give out medical advice, not to make his patient feel like a burden.

I don't spend every waking moment being angry over the misdiagnosis, but my husband is so sickly that I can't imagine him being normal with controled celiac. Remember, he was only diagnosed 10/03 so we are new to all of this. This is not exaggeration but he has had all of the "classic" celiac symptoms from the start. Many times when he would take a turn for the worst I would want to take him to the Emergency Room, but what would I say, "He has IBS and something is wrong with him?" The ER people would think we were two nuts.

One of the problems plaguing him is reoccurring hernias due to the fact that he's lost so much muscle tissue from losing weight over the years. This is a direct result of not being diagnosed properly from the beginning. He is on his 4th hernia, now remember, he doesn't work or lift anything heavy. He's only 130 lbs at 5'10". He has no fat stores and the body has been claiming his musculature over the years. When we were first married he lost more weight and I called his gastro, a doctor whom he saw many times, and the doctor said to me "Debbie, he just has to eat more." At that point when I hung up the phone I realized that this doctor had no clue as to what was really wrong or how to treat my husband. But then again, neither did I, but I wasn't the trained specialist -- my gosh I was only 22 years old and didn't have a clue about life let alone a mysterious rare disease.

Our routine is that every day before I go to work, I print out sections from this message board for my husband to read while I am at work. He keeps them in a file folder. I know that all of your words mean something to him as it helps him to realize that he isn't the only person going through this. I married him in traditional vows, one of which was "in sickness and in health" -- I am hoping I (we) get the health part for the remainder of our marriage. If I sound depressed, I am; I too have health issues. I was just told that my mammography came back with a suspicious cell change & need more testing. I often worry that if something happended to me, like I died or became disabled, how would my husband survive. He depends on me for his life; he has no one else, not even family who can take him in.

I have been thinking about drawing up a one-page flier on my own. Just basically describe what celiac disease is, how you acquire it, what you do for it, etc. and giving it out outside of the supermarket in town. That would make me feel like I am doing something to help spread information.

Thank you all for being there. It's appreciated very much.

Debmidge

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If a Dr is board certified then there are a certain amount of continuing education requirements--the docs could tell you what exactly these must entail. For nurses it depends on the state we practice in. I come from a state that is very strict on certification--but in the state I now live in nurses are not required to have continuing ed. (which is TERRIBLE). It is up to the integrity of the practitioner to obtain continuing ed. which I for one think is a MUST! Not only is it ethically right it is just good business.

Anyway, now I am going to say something that may stir up some commotion, so read it all before you throw food at your computer. SOME docs may be quick to treat someone like a hypochondriac because they realize the amazing impact that stress has on a persons body. Stress contributes to a huge number of illness, infact any disease known to man could be made worse by stress. This DOES NOT mean that there is not a bonafide illness the person may be dealing with, and this is the hard part--a doc has to decide "Is this all just stress, or is something more going on here?" Obviously we know celiac disease needs to be diagnosed so that people will get on the diet, and treat whatever secondary illnesses that celiac disease caused--so just treating the stress is not ok. Still other conditions may be totally related to stress--like certain headaches or certain stomach aches. Problem is often we don't know what to pursue. In the case of celiac disease, there is a lot everyone is still learning--and sometimes the path to diagnosis is cloudy (tests not coming back pos., etc). None of this excuses shoddy performance on the part of a doc, but I think as patients, we can help by going in informed, and calm. Be honest with the doc--let him/her know you know your stuff (they usually feel a greater sense of accountability to make sense to you if you know a bit about what is going on). A doc SHOULD treat everyone the same regardless if they know anything or not--but we are talking human nature stuff here. When I walk into a docs office and they see "RN" on my file, they treat me differently. I am not saying this is right! I am saying try to do some of the initial guess work yourself--so that you seem very informed. This is a tip with dealing with medical proffessionals, I am not condoning anything shoddy on the part of a doc, nurse, dietician, etc. In some cases, like Deb's she did what she could--there wasn't a ton of info when she started. Many are like her, and my heart goes out to her. She seems very intelligent, so I know Deb that y ou know all docs are not like the ones you have experienced, but you bring light to such an important topic. I am sorry this was so long--this IS a good discussion!

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I do understand that my myriad of symptoms did seem a bit unreal. I didn't blame my doctor for harboring some suspicion that I was hypochondriac. But I sat there and told him that, right up front when I saw the eyes roll, and told him that I honestly was ill and didn't know why. I had already been eliminating groups of foods/additives from my diet in an effort to be well, and he was aware of that. I was battling so many infections that we could not get cleared up, or once they were a new one would spring up immediately somewhere else. It was so scary! I also have a lifelong issue with anxiety, which i read is often part/parcel with celiac, so I feel pretty sure that is where his "oh you read about it" comment came from. But he's never treated me for anxiety since I already have a great program from Dr Weekes that I follow. He was willing to do the blood test since my daughter tested positive, but decided to send me for a colonoscopy since I was going to need one at 40 anyway(he IS concerned since my mom died of intestinal cancer). ? I wasn't even at 39 yet then, so I asked if he didn't mean an endoscopy, and he didn't see much reason for that, but I could talk to the gastro about it and let him decided which he would do, or I could also go back on gluten to get the positive result from the blood test. That's when I just knew that he didn't understand and wasn't feeling much inclined to understand, or trust my considerations of what was going on.

So honestly, the bottom line is, in this country at least, it seems to me, that this disease is just not being taught about enough! How do we change that? How can we nudge the medical community to seek more information? How do we help school nurses look and listen for clues? What is the best approach to take, one that will meet with positive results(although i am sure minute at the beginning) rather than appearing to head bash and turn them away from what we are trying to say?

Do any of you belong to local support groups? I don't think there is one in my area...is that a possible avenue? Is there a national support group, other than this forum/site, where we could join together and put something together that might make a difference? I don't understand all the ins/outs of that, but there just might be something that we can do! Anyone have any ideas?

I'd love to see the day when my daughters can go back to summer camps or youth programs and not have to go through the huge deal of making prior arrangements for bringing/preparing/storing their own food because the dieticians and medical personnel will know what celiac is. Not that we mind that, just like we've talked about before, people don't understand and so it becomes SUCH A HUGE ISSUE!!!

Good news is, there's a day-long fun thing that the older girl is going to this saturday, and the leaders remembered enough to ask me what she can/can't have and they will make sure that a few of the salads are gluten-free for her! WOW. And I, in my great gratitude, offered to make one to send along for the group to eat. :D I guess that's a start.

:D

Teresa

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    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
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    Source:
    Alimentary Pharmacology & Therapeutics

    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
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    Source:
    Gut. 2017 Feb;66(2):250-257.  doi: 10.1136/gutjnl-2015-310148.