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Guest nini

Bad Experience With Dr.s?

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To be proactive and take control of your life and health is hard work. Most people prefer to passively let life happen to them because it is the easy way out. I refuse to waste any energy or time on these kinds of people. I have better things to do.

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Yes, it is difficult for some (most) people to step up and take charge of their own health. Especially when it involves change--it's easier for them to blame it on the doctor than listen to their gut. (literally and figuratively) If a person has a problem, but keeps doing the same thing over and over, the results will never change. At some point, you have to say--wait a minute--this isn't working for me, and have the courage and insight to look beyond what you're being told and seek out what is wrong and what to do about it. If I didn't seek out alternatives, and do my own research based on what I learned, I would most likely still be sick and in the dark about it. Nini--I so understand about your mom. I have one just like her! Whatever her Dr. tells her is gospel. I have done literally hours of research, and have learned so much here, but she still would not take my advice seriously. She has a lot of the same issues that I did--but would never change her eating habits, so nothing is ever going to change.

I feel better--today must be the day for rants ;)

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Well, after reading everyone else's horrible dr stories I guess Ill add mine.

I went to my GP and told him how tired I have been and that I am always constipated, etc. I knew something had been wrong with me b/c I am young, healthy, exercise, eat right, etc. When I told him about the constipation he laughed and TOLD ME TO EAT A BANANNA!!!! Can you belive that? What a jerk...I cried in the car on the way home b/c he made me feel so stupid.

I have just about everyother dr tell me that it is stress too. None of the drs seem to actaully care. My gasterenterologist (sp?) did a colonscopy and then pushed and bunch of drugs on me that did not work. Basically every dr made me feel so stupid I didn't want to keep making appt's to see them b/c it would end the same way all of them did...me feeling stupid!

I went to my gyn last week and told her how I have been feeling and she mentioned celiac. How embrassing for all of my other drs that my gyn had the first possible dx when all of the "specialists" were clueless.

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Guest nini

eat a banana???? WTH???? sorry you were made to feel stupid...

it amazes me how many supposed "experts" really have NO CLUE about this.

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GO NINI! I agree 100%!! It really puzzles me why so many people just think a doctor must know EVERYTHING, when it is obvious they do NOT. In their defense, how could they? But what I take issue with is a lack of desire to FIND OUT when they are faced with a puzzling patient with symptoms they can't figure out. And if ALL OF US can figure out so much on our own, why can't the doctor bring himself up to speed? Especially when his/her own patient suggests the possibility of celiac....they don't go find out!

I think a lot of it is your own personality. If you are a take-charge type person who wants to know AND understand you will be an information seeker. Other personalities tend to want to be told everything. But if this condition doesn't make a person proactive on their own behalf, I don't know what will.

I guess I have been jaded by my direct observation 40 years ago of what my mom went thru (and nearly died) before ONE, just ONE smart and informed doctor was able to diagnose her where probably 20 doctors over the previous 8 or 9 years could not....they just kept telling her she was doing it to herself, it was emotional, in her head, blah blah blah. She told me one doctor once told her "Well now, we'lll just have to call this Mary's disease, won't we?" She said she wanted to punch him....or better yet, eat some gluten and throw up all over him!

And I've had an experience in my own life....my son had a condition which NO DOCTOR ANYWHERE could help/explain/solve, and thru my own efforts and searching and learning I found a solution....a revolutionary doctor who all the doctors I saw should have known about or at least found if they had done some moderate research....and I took my son to him and he helped him. So there you go....be proactive! Always! No one can be there for YOU as well as YOU can!

I'll get off my soapbox now! :P

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It's not just celiac that the doctors are clueless about--it's EVERYTHING. The problem is with our whole health care system,including what the med students are taught. I have had so many horrifying experiences, I don't even know where to start!

Let me see...

1) When I brought my 6-week-old baby to the pediatrician because he was turning yellow, the pediatrician laughed at me over the phone and said something about frantic first-time mothers, and added, "It's not jaundice, after all, your husband is Japanese (note: my husband's skin is not remotely yellow or even olive-toned), isn't he?" Then, when he saw how yellow Michael was, he said that it must be "breast milk jaundice" (which I don't believe truly exists in the first place, but it certainly doesn't start at 6 weeks!) and tried to get me to switch to formula. After he said, "Well, as long as you're here, we'll listen to his heart," and got out his stethoscope, he realized that Michael had a heart murmur, and sent us to a pediatric cardiologist, saying, "Well, it's probably nothing, but let's just get this checked out." The cardiologist said that my son was in congestive heart failure and that his liver was enlarged, hence the jaundice. (He had successful open-heart surgery when he was 2 years old, and is doing well now at age 10 1/2.)

2) When he was 4 months old, another pediatrician from the same practice told me that the reason he wouldn't nurse was that I didn't have enough milk, and that I should start supplementing with formula because I was starving him (never mind that I had 20 bottles of "my" milk in the freezer and that I fed him every hour and a half). Turned out that the reason he was refusing to nurse was that he had 2 teeth.

3) Yet another pediatrician from the same practice told me that I should let the same baby cry himself to sleep, and that if he vomited (which he often did when he cried), I should "go in like a robot, clean it up, and leave without picking him up." He was all of 7 onths old at the time.

I already ranted about the !@#$! dermatologist. Now I'm trying to figure out if the orthopedist who tells me I need shoulder surgery because of a "possible tiny tear in the rotator cuff" is just overexcited about the possibility of slicing my shoulder or not (I get conflicting info from the chiropractor and the PT, who feel that it should heal on its own just fine). The problem is, at this point, I have so little trust in anyone with MD after his name that he might be totally right, but I have great difficulty just taking his word for it.

Nini--you are so totally right!

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To answer the question about shingles all I know is this. It took three docs in ten days to figure out I had it. I did not fit the over 50 profile since I was only 40. After the shingles dx I read about it online and found out it presented in otherwise healthy people sometimes If they had an autoimmune disease. So I go to the neuro doc for pain relief (thought I'd die from the pain because I developed postherpetic neuralgia which makes you wish you'd die) and I ask about the autoimmune thing and he says we'd only worry about that if the Neuronton didn't work. Well the meds saved my life and I was off them in 9 weeks. Then I presented with anemia so for a while I thought the Neuronton was the cause of it...it wasn't but Celiac was. In the end it seems that my first Celiac symptom was almost five years exactly before my actual dx which means I had it when I got shingles, which explains me getting the shingles.

nini- you go girl! I'm embarrassed that I thought all this time we had the best docs in the world and we do if you have cancer I guess. But other than that, well I don't have much respect for a lot of the medical profession anymore. I'd like to say it's just that they don't know about Celiac but I had docs tell me to take allegra when I needed an antibiotic...if I hadn't gotten the anitbiotic in time, I would have been sick on a very expensive vacation. When I got walking phneumonia three years ago the PA I saw sort of laughed and said he didn't think anything was wrong....took a chest x-ray and then said I was two days away from being hospitalized since I was so sick. :angry:

Patti- I agree that something seems to be going on with docs not wanting to test for/dx Celiac disease. The hemo doc told me that the diet was awful and it was like never being able to eat anything good again :o . He also thought I needed three biopsies before he'd officially dx me anyway so off to the next doc I went.

This is why I'm going to keep writing every insurance company I can (signed anonymus) using the guide that Karen prepared for us to copy. Besides the patients, the next in line to benefit (finacially) are the insurance companies. So many other issues that arrise from undiagnosed Celiac may never rear their ugly heads if everyone who had Celiac knew it and just went off gluten. Insurance companies control all docs who take insurance as payment. So I don't see another way to get the docs more up to date than to let the insurance companies know how much money they may be spending needlessly.

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Guest nini

fiddle faddle, to answer about your shoulder, I am a licensed massage therapist and I've worked with a chiropractor now for over 5 years. I have seen plenty of rotator cuff injuries including tears, and I have treated extensive shoulder injuries that resulted in adhesive capsulitis (frozen shoulder) and I've seen them ALL heal completely without surgery. I have also seen patients come in years after the surgery for a rotator cuff injury and they are still having complications, they end up with MORE adhesions (scar tissue) and more pain in general, than someone who treats it with physical therapy, massage therapy and chiropractic. My areas of expertise are primarily necks and shoulders and low backs, so I do consider myself somewhat of an "expert" on the subject. You need to find a therapist, either physical or massage that can help you through the healing process, preferrably one who has access to ultrasound therapy and experience with shoulder injuries. There is no good reason to undergo the knife for a "small rotator tear" no reason at all...

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Guest Robbin
Thank you, everybody, for your supportive responses.

Robbin, I'm so sorry to hear about all your difficulties. I hope the enterolab thing gives you some definite answers. Sometimes the worst part is not knowing.

sure that whatever vaccines your children get do NOT contain thimerosal! The drug companies tookit out of MOST vaccinesin 2002, but the doctors we love so much are still using up old stores, and the nurses administering the shots have been told that nothing contains thimerosal anymore, which is not true. If it comes from a multi-use vial, it contains thimerosal. Also, the flu shot, and (last time I checked) the varicella (chicken pox) vaccine also contain thimerosal.

Robbin, your experience seems to blow my previous theory that things like food allergies and gluten intolerance are caused by baby formula! :rolleyes:

Hi FF, sorry I haven't been on this thread in a while, it makes me so mad to read these stories that I have to be in just the "right" frame of mind, you know? My oldest son is nearly 21, type 1 diabetic and has had so many health problems that I know in my heart is celic-related, but he is the stubborn one, my youngest just turned 13. Interestingly, he had severe reactions to his last vaccinations which were in 1998 AND my oldest "beautiful stubborn" one refuses to get flu shots because he insists they make him ill. Perhaps this is why.

Yeah, the nursing for so long was frowned on by alot of people too but what can you do when they are allergic to everything else? I was hoping it was a major plus for him to keep the allergies at bay, but he is allergic to so many things, I can't imagine he would be able to live if I hadn't. One of the worst episodes of dr. "jerkiness" was when my oldest son was seeing a pediatric endocrinologist. I told him he had major blood sugar highs mid-morning that had no relation to food intake. His STUPID RESPONSE WAS "WHY DO YOU TAKE A BLOOD-SUGAR READING MID-MORNING?"What an a--. Like it wouldn't be high if I didn't check it?!!!!!!! I have many, many such experiences, and so has my oldest son, so its no wonder he is so filled with anger and frustration. I know he was diagnosed as a "spoiled brat" when it was celiacs -which led to diabetes at age 9. What a mess. I only hope I can help other parents/people by at least informing them of another possibility that I never knew existed. Thanks, nini, for the thread idea. It sure helps.

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Guest nini
Thank you, Nini, I'm meeting Tuesday with a Physical Therapist who seems to specialize in helping people ward off orthopedic surgery. I hope she thinks I'm a good candidate for her type of PT! (Think good thoughts for me, okay? Thanks!)

you got it!!!!

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Nini, Nisla you are so right about avoiding shoulder surgery. My rotator cuff was worked on by the PT (despite the PT presciption being for "neck" only, PT and I knew it was shoulder so he worked on the shoulder "off the record.") I tore my should capsule too. The physical therapy after the surgery was very, very painful and for a time I thought I'd never get full ability back again. It took me more than the average time to regain my arm rotations again. I never want to go through that again. I was crying, groaning during the manual therapy it hurt so much.

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Guest BellyTimber

Doctors that are standing in the way between me and my livelihood are what is aggravating me.

With my collection of disabilities and illnesses I should work with support, but none of them have any recognition from the professions hence these people have "notified" my employers that the Disability Discrimination Act doesn't cover me, whereas in reality it covers me a number of times over.

I tried to negotiate adjustments and was met with a stalling response until now my M.E. has come back and I find self-advocating more difficult. A good thing I'm a trade union member but he isn't going to do most of this work for me!

One good thing is "Physiotherapy Direct", once you have got their contact details from the doctor you can contact them direct without the doctor knowing (mixed blessing), they have helped with lots of my stiff limb problems.

but he isn't going to do most of this work for me

I meant, my rep isn't ...

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Doctors that are standing in the way between me and my livelihood are what is aggravating me.

With my collection of disabilities and illnesses I should work with support, but none of them have any recognition from the professions hence these people have "notified" my employers that the Disability Discrimination Act doesn't cover me, whereas in reality it covers me a number of times over.

I tried to negotiate adjustments and was met with a stalling response until now my M.E. has come back and I find self-advocating more difficult. A good thing I'm a trade union member but he isn't going to do most of this work for me!

One good thing is "Physiotherapy Direct", once you have got their contact details from the doctor you can contact them direct without the doctor knowing (mixed blessing), they have helped with lots of my stiff limb problems.

I meant, my rep isn't ...

Michael, are there any support groups for any of your disabilities and illnesses near where you live (or even in cyberspace) ? The reason I ask this is, I thought maybe one might have members who can tell you how to get the support you need--maybe they've already been through the same thing and can help you navigate what sounds like a horrible system.

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I'm just feeling a need to vent. Again. :)

I did write a long scathing letter to my primary care doc and probably won't send it, but it sure felt good to write (it has multiple footnotes and sources and all kinds of stuff in it!) I dread changing primary care docs again, switching gastros, trading known jerks for unknown possible jerks. There's no guarantee that the next doctor will be THE doctor who pays attention and actually tries to help me. Why should the new ones be any different than the rest?

I have spent my life being the "difficult" patient who stubbornly "wouldn't get better" when their drugs and surgeries didn't work on me. My surgeon back in 93 (bowel resection) was spectacularly good at making me feel like dirt. "I'm back from vacation and you're the ONLY patient of mine still in the hospital!" "It can't possibly hurt there any more, we took your (ruptured) appendix out and there's nothing there TO hurt." "Don't worry about monitoring your temperature, you worry too much." (I was concerned it might spike and monitored it anyway, and it was 104.9 by the time I got to the emergency room a couple days later.)

Now I'm wondering whether I should report this latest stuff to someone. I don't KNOW whether or not I have celiac disease. They did an incomplete blood panel, which came back positive, a two-sample biopsy that came back negative, and in the face of all my gazillion symptoms they tell me that "medical science has no explanation" for my symptoms but it's definitely NOT celiac disease. This said while the primary care is handing me a lab report that indicates a positive result right there on it.

It sure does feel like doctors have been instructed to a. never EVER diagnose celiac disease, b. be as smug as possible about this subject, and c. make sure that the patient feels as though he/she is a hypochondriac in need of therapy and crying out for attention.

I'm worried for my kids, who of course won't be tested because the pediatrician says they're fine. I have been treated like an idiot by so many doctors for so long that I'm actually starting to doubt myself! Is the big round belly on my daughter just normal baby fat? Is the fact that my son cries all the time and is generally miserable really no big deal? Maybe so. I don't know!

I'm also worried about my bones. I notice a lot of people on here talk about noisy knees, and mine have gotten steadily worse in the last nine or so months since my son was born. Yes, I went from no clicks to two clicks per stair on the right knee going up, one click per stair on the left knee going down, but I'm also carrying at least the little brother (18 lbs) and sometimes the big sister (30 lbs) so maybe that's why.

I have one group (here) encouraging me to be strong, and one group (a bunch of doctors) trying to shut me up. I'm caught in the middle because WHAT IF they are right? A truly inquisitive mind has to accept the possibility that maybe they are right and my worries are just so much drama and imagined crisis where there is none.

I started on the diet last week, but now I'm second-guessing that as well -- not that I should go off it, but should I find a specialist who really knows their stuff regarding celiac disease and get the full blood panel and proper biopsy before the gluten is out of my system? I'll have to pay out of pocket for it. All the gastros in my medical group work with Dr. Arrogant-pants and according to my primary care, their medical group doesn't even DO the full blood panel. Ever. Then I'll want the kids tested too, if they can even test at under a year old. I know they can do the blood work for my two-year-old.

I think we're getting money back from our taxes this year... the expense might be worth the peace of mind it would buy. Then I'll just need to remain confident that I am NOT a drama queen looking and looking until someone says what I want to hear.

I hate that the medical community has created such a hostile, intimidating environment. They're supposed to be authorities. They're supposed to help make us better, but they refuse with a mean laugh and condescending shake of the head.

This sucks. Sorry to be such a downer. :(

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I have one group (here) encouraging me to be strong, and one group (a bunch of doctors) trying to shut me up. I'm caught in the middle because WHAT IF they are right? A truly inquisitive mind has to accept the possibility that maybe they are right and my worries are just so much drama and imagined crisis where there is none.

Well, lets say you adopt a gluten free diet. What's the worse that can happen to you? No one ever got ill or sick from a lack of gluten in their diet. At best, you and your kids get a lot healthier. If, 10 years from now, they discover that hey, maybe eating wheat isn't the best thing for any human, you'll be ahead of the game.

In the end, its just about making some choices about what you're going to eat. Do you need an official diagnosis? There's a lot of folks out there that have the official diagnosis that don't stick to the diet. I don't need a positive biopsy to tell me that when I eat wheat a bunch of bad things happen to me.

Sometimes we need to just take charge and make decisions for ourselves and not wait for pokey old doctor training to catch up with reality.

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Guest mvaught
Mvaught,

Same jerkfilled attitude was thrown at me by two GI's. Once after my biopsy had come back negative; I had been gluten free for three months. The doc said that it didn't matter, she would have been able to find the damage if there was indeed damage to be found. She gave me no other options for why I had had such celiac disease symptons or why I felt better when I was gluten free.

A good doctor friend got me in to see another doc in the practice who he thought might be better for me. His attitude was cold, though he did agree to do a blood test to see if I had either of the genetic markers for celiac disease. He at least did not see the benefit of going back on gluten for six months to have another biopsy. He was chagrinned to tell me that I have the genetic marker that all Celiacs have, but so does one third of the population and not all of them are Celiacs. He did admit that I could well have Celiac Disease, but stopped gluten befor it damaged my gut.

Here's the attitude that irritated me most of all. He was daggone rude to my son on the phone! My son has mono and was really sick last week when the Doc tried to reach me to tell me the test results. My son told him that I had just left. The doctor growled that he had just called five minutes earlier and no one answered. Bless my boy's heart, he held his tongue, and got out of the bed to write a note for me. The next morning I got a message on the answering machine - the first one mind you. The doc said that he had been trying to reach me all week. He had left a message with someone, my son, probably. I could call him, if I wanted to talk with him. Wow. I had been home the whole week. I don't have caller ID, but I can tell if someone has called and hung up. Had none of those let alone any messages from him. (I have a common last name, but there is an extra letter with no one expects. If you don't read it correctly, you'll not be calling me. I suspect that the doctor was calling another one of his patients. BUT don't take it out on my kid!)

cape

i'm really sorry that that happened to your son. bless his heart. i was lucky to finally get some vaildation from my GP - who said, well you went off gluten and when you eat gluten by accident, you get sick - so that is all we need, right? totally. i felt better having some validation. if theose doctors could only live our lives for a day or two, then they would not have their snooty "doubts" - what do they care anyway? so what if we are completely crazy and aren't when we don't eat gluten - how does that hurt them? i guess it looks bad for them to not be able to prove things with all of their expensive tests and so on - i mean, if all you need is a dietary test (no gluten makes you well), then they are loosing a vacation house and a third lexus. anyway, no matter how greedy one is - there is no excuse to treat a kid the way that doc treated your son!

-michelle

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Guest mvaught
I'm just feeling a need to vent. Again. :)

I did write a long scathing letter to my primary care doc and probably won't send it, but it sure felt good to write (it has multiple footnotes and sources and all kinds of stuff in it!) I dread changing primary care docs again, switching gastros, trading known jerks for unknown possible jerks. There's no guarantee that the next doctor will be THE doctor who pays attention and actually tries to help me. Why should the new ones be any different than the rest?

I have spent my life being the "difficult" patient who stubbornly "wouldn't get better" when their drugs and surgeries didn't work on me. My surgeon back in 93 (bowel resection) was spectacularly good at making me feel like dirt. "I'm back from vacation and you're the ONLY patient of mine still in the hospital!" "It can't possibly hurt there any more, we took your (ruptured) appendix out and there's nothing there TO hurt." "Don't worry about monitoring your temperature, you worry too much." (I was concerned it might spike and monitored it anyway, and it was 104.9 by the time I got to the emergency room a couple days later.)

Now I'm wondering whether I should report this latest stuff to someone. I don't KNOW whether or not I have celiac disease. They did an incomplete blood panel, which came back positive, a two-sample biopsy that came back negative, and in the face of all my gazillion symptoms they tell me that "medical science has no explanation" for my symptoms but it's definitely NOT celiac disease. This said while the primary care is handing me a lab report that indicates a positive result right there on it.

It sure does feel like doctors have been instructed to a. never EVER diagnose celiac disease, b. be as smug as possible about this subject, and c. make sure that the patient feels as though he/she is a hypochondriac in need of therapy and crying out for attention.

I'm worried for my kids, who of course won't be tested because the pediatrician says they're fine. I have been treated like an idiot by so many doctors for so long that I'm actually starting to doubt myself! Is the big round belly on my daughter just normal baby fat? Is the fact that my son cries all the time and is generally miserable really no big deal? Maybe so. I don't know!

I'm also worried about my bones. I notice a lot of people on here talk about noisy knees, and mine have gotten steadily worse in the last nine or so months since my son was born. Yes, I went from no clicks to two clicks per stair on the right knee going up, one click per stair on the left knee going down, but I'm also carrying at least the little brother (18 lbs) and sometimes the big sister (30 lbs) so maybe that's why.

I have one group (here) encouraging me to be strong, and one group (a bunch of doctors) trying to shut me up. I'm caught in the middle because WHAT IF they are right? A truly inquisitive mind has to accept the possibility that maybe they are right and my worries are just so much drama and imagined crisis where there is none.

I started on the diet last week, but now I'm second-guessing that as well -- not that I should go off it, but should I find a specialist who really knows their stuff regarding celiac disease and get the full blood panel and proper biopsy before the gluten is out of my system? I'll have to pay out of pocket for it. All the gastros in my medical group work with Dr. Arrogant-pants and according to my primary care, their medical group doesn't even DO the full blood panel. Ever. Then I'll want the kids tested too, if they can even test at under a year old. I know they can do the blood work for my two-year-old.

I think we're getting money back from our taxes this year... the expense might be worth the peace of mind it would buy. Then I'll just need to remain confident that I am NOT a drama queen looking and looking until someone says what I want to hear.

I hate that the medical community has created such a hostile, intimidating environment. They're supposed to be authorities. They're supposed to help make us better, but they refuse with a mean laugh and condescending shake of the head.

This sucks. Sorry to be such a downer. :(

I completely understand how you feel. I have two kids as well - wondering if I should get them tested, but after my experiences, don't want to put them through it. anyway, you know, i went off gluten and for a short perios went back on it, because i was going to get the tests done- i couldn't deal with it for even a day! i was so sick immediately that i said - no way in hell i can do this, so went back off of it. you should do what you feel most comforatable with - but for sanity sake, at least consider just going off gluten for good and not going back to the doctors for more expensive tests. i mean - just like others have said, being off gluten is no harm to you if you don't eat it - and if you are in fact celiac, then it will harm you do. i totally know how it feels wanting the validation, but you health is worth more than that - it is jut a matter of acceptance. i decided that i wasn't going to do a full gluten challenge and finally did get validation from my GP, but i wasn't even looking for it at that point. i know my body and it is celaic. no one can convince me otherwise, because eating gluten convinves me that they are wrong (when i get accidently glutened). anyway, i agree with you about the hostility in the medical community. it is really sad. so just shake your head condescendengly back to them and stop giving them your money (that is what i did and i am so happy - and healthier now). i sincerely hope that whatever it is you need, you receive (maybe there is a doctor out there for you that will listen - that is great too). if not, don't sweat it - luckily celiac is something we can deal with without doctors. so more power to US!!

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I started on the diet last week, but now I'm second-guessing that as well -- not that I should go off it, but should I find a specialist who really knows their stuff regarding celiac disease and get the full blood panel and proper biopsy before the gluten is out of my system? I'll have to pay out of pocket for it. All the gastros in my medical group work with Dr. Arrogant-pants and according to my primary care, their medical group doesn't even DO the full blood panel. Ever. Then I'll want the kids tested too, if they can even test at under a year old. I know they can do the blood work for my two-year-old.

Hi Moonunit,

Have you considered turning to Enterolab for answers? If you are going to put money out anyway, maybe Enterolab will give you some answers that the medical establishment doesn't want to bother looking for.....

Hugs and good luck!

Karen

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Thanks for the support!

Yes, basically at this point I'm at three choices: Enterolab, find a local expert doctor, or just trust the diet if it works (so far it's been 6 days and I do feel a little bit better but I need to discount possible placebo effect). I'll give it the whole three months and step up the strictness to better avoid cross-contamination etc. and see what happens, but I'm optimistic.

I'm thinking since Enterolab can do the work even after I've been on the diet, I'll probably test myself and the kids if the diet really seems to make the diagnosis logical. Right now I feel like I just need that scientific validation if I'm going to be going to this much trouble. I might end up not needing it if I see sufficient results on the diet, who knows.

Another insidious side-effect of this whole situation for everyone is that so many of us have been trying for much of our lives to get doctor after doctor to listen. So to take basically your lifelong stance when it comes to doctors and turn it on its ear (change from "I'll keep trying till I find someone who can help me" to "I'll diagnose and treat myself without any doctor's approval at all) is very difficult!

I'm in a better mood today, though, and suspect that dealing with this will get easier rather than harder. (By the way, Outback Steakhouse was AWESOME about the gluten-free menu -- I will definitely be voting with my dollars by going there more frequently now!)

P.S. -- I'll vote with the dollars that are no longer going to co-pays, hehe! ;)

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This thread is a great idea. Thanks. My story is also similar to alot of posts that I have read. I believe that I have had celiac disease most of my life. It makes me angry that it has taken me until age 45 to get to the bottom of all of the pain and misery that I have been through. Not just physical pain, but emotional pain too. I remember when I was a kid and would be deathly sick from eating breakfast and started to throw my meal out into the trash. I was severely beaten for doing this and forced to eat. I threw up at school after lunch. My legs would hurt so bad that I would cry at to fall asleep. In my 20's I started having problems running and lifting weights. I couldn't even get up my stairs and finally needed my mother-in-law to help with my kids. I was diagnosed with anxiety. It was in my head and I think that family and friends thought so too. I saw a neurologist who diagnosed Mcardles disease. Another thought chronic fatigue, One guy thought that I had a metabolic myopathy, but couldn't answer my questions when I asked if diet could help me. In July of 2004 I went on a seven mile bike ride and could not get out of bed for four days, yet no one knew why. By this time my mom had been diagnosed with celiac disease. Not one doctor listened to me when I told them that my mom had celiac disease. Noone even suggested that I go through blood work to see if I had it. I've had EMG's, MRI"S, CT scans, surgeries, biopsies, er visits for exruciating abdominal pain, blood work, xrays, etc. It's in your head they told me. I am now worried about my current GI because when he spoke to me after my biopsy, he minimized all that I had been through and told me he knew people who had it worse than me. He also told me that muscle pain, weakness and fatigue had nothing to do with celiac disease. I'm worried about this and I've only been gluten free for six weeks. I cannot be sure that he will help especially when I feel so aweful. Thanks for letting me vent. Tara

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Guest mvaught

My GI wouls also smirk at me and tell me that celiac is not what i have. He also made no connection between my stomach problems and joint pain, muscle pain, extreme fatigue, passing out, horrible headaces, etc. He wasn't the only doctor that basically turned me away. It really seems that there is some reason they try not to diagnose celiacs - hmm. Anyway, countless numbers of doctors later, I am really happy that I was able to be okay with the self diagnosis (which then after i made that decision, i did get some vaildation from my GP - but not in the form of tests or anything, just reassurance that from what she can tell symptomatically, i have celiac). it was a hard decision to make - to not buy into the laughing GI that is saying that i am stupid and it is in my head, but i am better for it. of course, my husband is the best support of that. he has seen me off gluten then on it again then off and then on and now off for good and as he says to me "Gluten is poison for you, it is so obvious." Since I jerked my body around so much - off and on, etc. I had a lot of trouble the final time i decided to be gluten-free for good - i had lots of bloating and C and fatigue, etc. but it was just because my body had gone through the runner and needed some time. now it has been 4 months and the bloating has been gone for about a month now. AND there are things that are better that i wasn't even aware of as a problem - my hair used to fal out in clumps and now it doesn't, my skin is better (my coloring is better), my nails have always been brittle and now they are like a new set of nails, and even though I haven't excercised for 2 years due to being so sick - all of the sudden, my muscle tone is better (as if i suddenly started working out or something, but i haven't). of course, the times that i do get glutened by accident (usually at "safe"restaurants that i ger CC at)...i immediately can tell - i start off getting very tired, to where i can't stay awake, then D and headace, and then again when i shower my hair falls out in clumps. it is the same reaction everytime it happens. then again, it takes my body about a week to recover (and i am C the whole time that week). i am soooo amazed at what the slightest bit of gluten does to my WHOLE body! i know that i will never doubt for a moment that celiac is a whole body disease and not just GI. my own body is the evidence and luckily i am okay with that. i hope everyone else struggling finds what they need to have peace of mind, because once you get it - you will feel so much more confident in your ability to make yourself well (beyond what you even knew was possible).

hugs,

michelle

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My GI wouls also smirk at me and tell me that celiac is not what i have. He also made no connection between my stomach problems and joint pain, muscle pain, extreme fatigue, passing out, horrible headaces, etc. He wasn't the only doctor that basically turned me away. It really seems that there is some reason they try not to diagnose celiacs - hmm. Anyway, countless numbers of doctors later, I am really happy that I was able to be okay with the self diagnosis (which then after i made that decision, i did get some vaildation from my GP - but not in the form of tests or anything, just reassurance that from what she can tell symptomatically, i have celiac). it was a hard decision to make - to not buy into the laughing GI that is saying that i am stupid and it is in my head, but i am better for it. of course, my husband is the best support of that. he has seen me off gluten then on it again then off and then on and now off for good and as he says to me "Gluten is poison for you, it is so obvious." Since I jerked my body around so much - off and on, etc. I had a lot of trouble the final time i decided to be gluten-free for good - i had lots of bloating and C and fatigue, etc. but it was just because my body had gone through the runner and needed some time. now it has been 4 months and the bloating has been gone for about a month now. AND there are things that are better that i wasn't even aware of as a problem - my hair used to fal out in clumps and now it doesn't, my skin is better (my coloring is better), my nails have always been brittle and now they are like a new set of nails, and even though I haven't excercised for 2 years due to being so sick - all of the sudden, my muscle tone is better (as if i suddenly started working out or something, but i haven't). of course, the times that i do get glutened by accident (usually at "safe"restaurants that i ger CC at)...i immediately can tell - i start off getting very tired, to where i can't stay awake, then D and headace, and then again when i shower my hair falls out in clumps. it is the same reaction everytime it happens. then again, it takes my body about a week to recover (and i am C the whole time that week). i am soooo amazed at what the slightest bit of gluten does to my WHOLE body! i know that i will never doubt for a moment that celiac is a whole body disease and not just GI. my own body is the evidence and luckily i am okay with that. i hope everyone else struggling finds what they need to have peace of mind, because once you get it - you will feel so much more confident in your ability to make yourself well (beyond what you even knew was possible).

hugs,

michelle

Michelle, I read your post and found that you have IC also and adhesions. How are those two issues going for you? Tara

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My GI is an a#$!! He does not impress me at all. Why he waited over 2 weeks to tell me he found H. Pylori while doing the Biopsy. I called within 5 days to get the reults. I was told if he found anything he would have called, so wait until your appointment. He never sent my Dr any results, So I go in with pain and he treated me for a UTI. (which I did not have) I went to pick up the meds, 3 of them but the Insurance Co does not want to pay. I have to call later today to make sure it got worked out. I have had so much pain from this. I will never go back to this GI again!! Thanks for letting me vent! Hugs

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I have questioned doctors over the years, but it was obvious they knew NOTHING....hardly even what test to order!!! A few years ago I had blood tests (not even the correct ones) and a couple of doctor visits and I found out NOTHING...but ended up paying more for this than the Enterolab test cost.

The fact is, doctors don't know everything about every condition. Celiac is something you need to take charge of yourself because it's just not on the radar screens of most doctors. If you've found your way to this site, you're already taking things into your own hands and that's good. Learn everything you can about celiac disease and gluten and what it can do to the body. Knowledege is power. Do your OWN testing....the Enterolab test is great....they mail it to you (you produce a stool sample for the main tests and swab the inside of your cheeks with a q-tip type thing for the gene test, and about 2 weeks later you get a nice set of results and you'll KNOW where you stand.

You do NOT need a doctor who is clueless ordering test after expensive test which may or may not show relevant information for you. The Enterolab stool tests pick up antibodies the blood tests miss....and you can also find out about which genes you have. Why on earth pay a doctor to try and find out about something he hasn't read up on very much and doesn't really understand anyway?

All roads will lead to the same place if you have celiac disease: the diet. Why pay much more and perhaps spend years getting a proper diagnosis when you can get what you need to know in about 2 weeks?

Enterolab was the best medical $$$ I've ever spent in terms of improving my health!

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