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shawna67

At A Complete Loss For Words After Years Of Unethical Treatment By Doctors

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I'm so irritated right now that I'm having a hard time putting my thoughts into words without feeling a lot of rage, so I'm going to keep this email intentionally short. To make a very long story short, I've been experiencing chronic GI problems for over 15 years only to be told by doctors in my area that its all in my head and that I have anxiety disorder. This is after many years of experiencing neurological problems (brain lesions and scary symptoms), abdominal pain and bloating, severe GERD, severe iron deficiency (my iron stores are now 2.3), trouble digesting food and medications, severe constipation, rashes, and other unfortunate symptoms. One doctor years ago told me that it was all "in my head". Ever since then, all other subsequent doctors have fallen in line with his diagnosis and have treated me in a very unethical, negligent, and unprofessional manner. In fact, they've been downright abusive towards me and have berated & patronized me in their offices. The fundamental problem is that I ABSOLUTELY CANNOT GET A CLEAN SLATE FROM DOCTORS. And today was no exception. I saw a local gastroenterologist for the first time and within five minutes of meeting me, he told me that I had constipation and anxiety disorder. As he was rudely telling me this, I happened to notice he had records on his desk from past doctors I had bad experiences with; I disagreed with him and told him his hasty diagnosis (he knew me all of 5 minutes) did not explain my symptoms & why I'm so iron deficient and cannot absorb nutrients and medication. He then told me that he could not see me again as a patient & that I needed to find a new doctor & he walked out of the room. This is right after he did a rectal exam and said he could feel that I had severe constipation & wanted to do some x-rays of my stomach to make sure nothing was going on.

This mistreatment has been going on for many, many years. I first saw a GI doctor about 20 years ago when I was 20 years old. I've been very very ill for years and my life is passing me by and I cannot enjoy it feeling sick all the time. I just recently consulted a Celiac Clinic at Beth Israel Medical Center in Boston and the doctor I saw wants to do a colonscopy, endoscopy & small intestine biopsies. I've already had 3 colonoscopies and 2 endoscopies but the idiot local doctors I saw never thought to check for celiac. Now, they're conveniently trying to say its all in my head since they probably don't know what the hell they're doing & they probably know next to nothing about celiac disease.

Has anyone else had such similar negative experiences with doctors? And do my symptoms sound like possible celiac? Any advice on this matter would be much appreciated. I'm at witts-end and have hit absolute rock bottom.

Thank you.

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Yes, you absolutely sound like you may have celiac disease. Why don't you just forget about all those ignorant, arrogant doctors and just simply put yourself on the gluten-free diet! If it makes you feel better, you'll have your answer. It is nobody's business than your own what you eat or don't eat, you don't need anybody's permission to eliminate gluten from your diet.

I was told for 49 years that it was all in my head, and figured out I am gluten intolerant on my own nearly three years ago at the age of 52. I've been gluten-free ever since and will never eat gluten again.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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You hit the nail on the head when you called my doctors arrogant and stupid. Thats precisely what they are. I did go on a gluten-free diet and started to feel a lot better within a month, but lately I haven't been careful with my diet. I think there's definitely some gluten getting into my diet. Maybe I need to go back to being really strict with my diet again.

I'm a little concerned that my iron stores are so low and they keep going lower and lower within a matter of a few months. Last August my iron stores were like 7 and my iron saturation rate was 17.2 (normal is 25 to 60, I believe); 3 months later my iron stores were 5 and my iron saturation rate was 9.2. Two months ago my iron stores were 2.3 and my saturation rate was 5. Any suggestions as to what might be going on here? I'm a little nervous by how quickly my iron stores are going down. And my hemoglobin and hematocrit are low too.

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You hit the nail on the head when you called my doctors arrogant and stupid. Thats precisely what they are. I did go on a gluten-free diet and started to feel a lot better within a month, but lately I haven't been careful with my diet. I think there's definitely some gluten getting into my diet. Maybe I need to go back to being really strict with my diet again.

I'm a little concerned that my iron stores are so low and they keep going lower and lower within a matter of a few months. Last August my iron stores were like 7 and my iron saturation rate was 17.2 (normal is 25 to 60, I believe); 3 months later my iron stores were 5 and my iron saturation rate was 9.2. Two months ago my iron stores were 2.3 and my saturation rate was 5. Any suggestions as to what might be going on here? I'm a little nervous by how quickly my iron stores are going down. And my hemoglobin and hematocrit are low too.

have you considered seeing a naturopath? I'm not sure what state you are in but in the seattle area there are quite a few good doctors that I have found (after seeing a bunch of really bad ones!) anyway it is worth a try!

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I have not yet met in person a doctor who would be able to accurately diagnose me. None of them have known that neurological symptoms and brain lesions are also symptoms of auto immune disease caused by gluten intolerance.

None of the doctors I have seen acknowlege that anxiety is a symptom of gluten intolerance.

None of the doctors I have seen who have tried to pin me with a fibromyalgia diagnosis when they couldn't find a reason for the arthritis, have acknowleged that a fibromyalgia diagnosis is their way of saying that in their opinion the patient suffers an emotional disorder which causes their brains to feel pain more accutely.

I think that's weird.

I know there may be doctors out there that know this. Most people don't have access to that type of physician, because of their health insurance's restrictions on who they can see, and when.

I understand completely about the lack of professionalism displayed by the medical profession today.

When you come in for an appointment, they have alloted you "x" number of minutes to agree to be examined, sent somewhere for tests, and have a prescription for something written. That's it. If you deviate from their plan, you are told not to come back.

I have been outright lied to about test results during an appointment with a doctor, who did not realize I had gotten written results. This has happened more than once. At first this shocked me, then I got the second shock of my life when I'd tell people this story in more detail, both in person and on the internet, they always blamed me. Get a new doctor, because there surely must be something wrong with me, because a real doctor wouldn't do that and you just call and get an appointment with another one anyway.

yes, and wait 2 months for an appointment, and if the new doctor sees anything from the old one, you are blacklisted.

I have also been told by a doctor to come back in for a follow up appointment, and then had the doctor's office staff tell me the opposite when I tried to schedule it. When I asked them to send me a written copy of test results, there it is on the paper "Dr. requests patient return for follow up exam and retest in 3 months. " I also have been told to go to the ER to get a script refilled because they would not call in a refill for asthma inhaler without a new appointment, yet they had no appointments for 4 days. Said inhaler is something I use rarely but I had a script from that doctor's office for it in the past year, which had expired. The drugstore said no problem and they would fax the office for a new one. They then said the next day they got no reply. ( I refused to use the ER and managed to get an appt. with the nurse practitioner . Now mind you, I have what is "supposed" to be very good health insurance. Be sure to schedule all your upper respiratory illnesses for Monday so you can be seen the same week. )

So the new version of reality in America right now is one is expected to literally fight for access to medical care, if you fall into certain categories.

I still don't know what is the best response for dealing with this. I know I asked a neurologist who did an MRI of my brain, what parts of my brain would be effected by having these "bright spots" in them, after their office calls me up and tells me this (uh, wouldn't you be curious? I was ) and she said she'd check, got up, walked out of the room and sent a NURSE back into the room 10 minutes later to dismiss me from the appointment. This is just too plain weird for my comtemplation, I am told in real life that I am calm and have nice manners, and I think from my writing skills I show some ability to think, I've never had a meltdown in a doctor's office. This doctor instead is insisting I should have headaches. I have loss of balance instead. No, I should have headaches. Don't I have headaches ?

I'm thinking I have muscle spasms big time in my neck from pinched nerves in the C- spine, that may tighten some muscles over my head, but that's just not a headache, and I don't want to get into it too much because that may be too complex. Or my eyes get bad eyestrain sometimes, but again, I work with the optician on my eyeglasses prescription and we can get rid of that. But there is no way I can invent migraines for this brain lesions. Sorry doc, there goes that idea you had to write some script for who knows what headache drug that some salesman was giving out samples for, when I came here because I was losing my balance, and you found holes in my head, and then you insist that there is nothing wrong with me.

That was about a year into the diet change, btw. Oh yeah, I told that neuro about THAT and it made no impression on them, either. The diet change was improving my balance slowly. It took several more years to regain the coordination, but I've come much farther than I ever thought possible.

But back to the topic at hand.

When I get cross contaminated, if it's a lot, I am more firey tempered, but I just tell myself I'm either reacting to gluten if I also feel spaced, or reacting to life stress or injustice in general, and I don't let the fact that I am hotter interfere with how I am interacting with others. It's better to find constructive things to do with the extra emotions if possible.

As for the medical profession, since I've lived in this body for over 5 decades and I know how I react to food, I just take control of the situation and I tell them I am this. They can like it or lump it, but it is me, this is what I am, it is non negotiable to fit their current disease of the month.

Like ursa major says, you don't "need permission" from the medical profession for eating a gluten free diet. You either eat it and take the proper supplements and feel better, or you don't, and if you adhere to the diet, adjust for any other food intolerances, you figure out it works.

I am so far into this that when other people talk about craving foods like pizza, I don't get like that at all, it smells pleasant but has no appeal for me unless I made it myself and know exactly what went into it, or if it was from the gluten free bakery in the bay area. There is no mourning nor feeling of being "left out," chances are I already ate "my stuff" and I'm not hungry, I socialize in other ways like talking to people and sticking to drinking and eating safe things.

You cannot do this diet half heartedly or it does not work. You might also have to give up soy, or dairy, or lactose, or something else. You should take a gluten free B complex vitamin, and some calcium, and vitamin D, and also supplementary iron. I got low last winter and I started sucking down spoonfuls of molasses, very crude but effective. If you are not strict, you will have mal absorbtion problems that alter your mood. Not being strict also means you have trouble wtih absorbing B vitamins. Eating soy may depress your thyroid. You are more prone to bone loss so you need calcium, and that also helps with sugar cravings.

A simple blood test for the gliadin (gluten protein) antibodies can tell if you're eating gluten or not, once you stop seriously for several months, the test is no longer functional for you. There are also genetic test for certain genes that will show you have a higher possibility for developing gluten intolerance. Not all people with the genes get it. But also, from what I have learned here, if you are one of those with the neurological symptoms you may be one who also has slightly different genes than the average American doctor would recognize as being celiac or gluten intolerant related.

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I too wish you luck and commiserate. I agree with the posts about just trying the gluten free diet to see if it helps or not. I have a feeling it will. For myself to really do the whole trick I had to avoid trace glutens too--even in shampoo, lotion and lipstick!! As well as in possible cross contamination like old toasters and wooden cutting boards etc--or the trials and tribulations of eating out or dating someone who has just eaten a sandwich!!

So many doctors in this country are not clued in to this condition. I was first diagnosed when I was a 4 or 5 month old infant. I had stopped growing plus was very ill with pneumonia after being introduced to grains. Nothing worked but to take me off gluten. However I was reintroduced to gluten when I was four years old and they kept me on them since I grew. However I started to become sickly again and mentally out of it (saw visions and heard things for instance) and was constantly battling ill health for years and years. But no one noticed the connection or ever bothered to tell me about what had happened when I was an infant until a little over a month ago after I got pretty severely ill again from gluten cross contamination. Fortunately now I know what it is I am dealing with and am much better! I am now 58, going on 59! For years I was told my concerns with health were all in my head.

Similar things have happened to my ex partner with both AMA and naturopaths. He is also gluten intolerant with a tendency for it to turn into RA if he ignores it. Again he is told it is all in his head. However by following a gluten free diet he has gotten much better--plus he takes detox herbs, uses a sauna now and then and exercises.

I just have to say that in some ways it is "true" that it is in our heads since the celiac does affect the nervous system due to malabsorption and thus the "head"! I for instance also have to take special co-enzyme B vitamins in order to be well and whole as well as observe my diet.

I also believe people who get celiac in general tend to need more exercise than the usual person; I believe this is due to the fact that without it we can get too much cortisol running around which then helps augment many of the over-active auto immune difficulties we tend to have. It may also cause adrenal exhaustion as a result. It can make us not be aware we need to exercise since we feel so "tired" but then can't sleep! And then without sleep we don't feel like exercising!! Aerobic exercise and avoidance of gluten helps break this vicious cycle. However in the meantime we can seem really out of control at times even though there is a direct physical problem causing or at least exacerbating the whole thing.

Taking Magnesium to bowel tolerance by the way might help with the constipation problem plus it helps calm the nerves (as does to a certain amount calcium, though it is more constipating than the magnesium, that is why most people take both as well as the need to make up for the malabsorption).

I have suggested various things here in other posts that help heal the villi, something you might want to look into also -- like marshmallow root to soothe the villi, and dandelion root or milk thistle (silymarin) caps to help the liver deal with all the toxins running around caused by the damaged villi creating leaky gut syndrome. Avoid taking anything with alcohol in it like tinctures however.

This is complicated but maybe you are starting to get the picture.

Hope this helps. Don't want to overload you with too much info at once.

And yes welcome to the Boards!

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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I'm so irritated right now that I'm having a hard time putting my thoughts into words without feeling a lot of rage, so I'm going to keep this email intentionally short. To make a very long story short, I've been experiencing chronic GI problems for over 15 years only to be told by doctors in my area that its all in my head and that I have anxiety disorder. This is after many years of experiencing neurological problems (brain lesions and scary symptoms), abdominal pain and bloating, severe GERD, severe iron deficiency (my iron stores are now 2.3), trouble digesting food and medications, severe constipation, rashes, and other unfortunate symptoms. One doctor years ago told me that it was all "in my head". Ever since then, all other subsequent doctors have fallen in line with his diagnosis and have treated me in a very unethical, negligent, and unprofessional manner. In fact, they've been downright abusive towards me and have berated & patronized me in their offices. The fundamental problem is that I ABSOLUTELY CANNOT GET A CLEAN SLATE FROM DOCTORS. And today was no exception. I saw a local gastroenterologist for the first time and within five minutes of meeting me, he told me that I had constipation and anxiety disorder. As he was rudely telling me this, I happened to notice he had records on his desk from past doctors I had bad experiences with; I disagreed with him and told him his hasty diagnosis (he knew me all of 5 minutes) did not explain my symptoms & why I'm so iron deficient and cannot absorb nutrients and medication. He then told me that he could not see me again as a patient & that I needed to find a new doctor & he walked out of the room. This is right after he did a rectal exam and said he could feel that I had severe constipation & wanted to do some x-rays of my stomach to make sure nothing was going on.

This mistreatment has been going on for many, many years. I first saw a GI doctor about 20 years ago when I was 20 years old. I've been very very ill for years and my life is passing me by and I cannot enjoy it feeling sick all the time. I just recently consulted a Celiac Clinic at Beth Israel Medical Center in Boston and the doctor I saw wants to do a colonscopy, endoscopy & small intestine biopsies. I've already had 3 colonoscopies and 2 endoscopies but the idiot local doctors I saw never thought to check for celiac. Now, they're conveniently trying to say its all in my head since they probably don't know what the hell they're doing & they probably know next to nothing about celiac disease.

Has anyone else had such similar negative experiences with doctors? And do my symptoms sound like possible celiac? Any advice on this matter would be much appreciated. I'm at witts-end and have hit absolute rock bottom.

Thank you.

This is the same experience as my husband (see below my signature). He's a shell of

the man he once was (see his photo in my posts). Imagine about 40 pounds thinner

and loss of muscle tone. That's what misdiagnosis has done to him. On paper his

blood tests are subperb! (except when they did the celiac blood tests in 2004). Whoops!

They made a mistake for 27 years! He still gets subperb blood test results and feels

like poop.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Dont give up on finding a good Doctor. I did, but it took me 12 years.!! 12 years of suffering. Yes, many of us have had similar experiences with Doctors.

I had really bad vertigo (and still have it mildly). So at one time I went to a World renouned ENT here in Tampa. You could read about him in the paper all of the time and all of the wonderful things he is doing for children, etc. He is supposedly the best there is here. So I made an appointment (paying out of pocket because my insurance wouldnt cover him). I had a crap load of tests done and then a consultation with him.

When came in the room, he immidately asked me about why I was "self pay". And did I know how much everything would cost and could I afford it....blah blah blah. THAT was his focus!!! He asked me one question, "Did you enjoy the ferris wheel rides and such at the fair when you were a child?" and I said "No." He then told me that my problems were all psychological and that I was wasting his time when I should be at a psychiatrist. It is the ONLY time I have left a doctor's office with uncontrollable sobbing.

I later asked for a copy of my results from the testing, which showed that I had some problems in my balance system. I then went to a different ENT that said YES, I had issues with my fluid in my ears and my nerves. And he at least prescribed a type of physical therapy to help me cope (which helped me A LOT).

So I wrote a letter to the World Renouned guy and told him my second opinion doctor had real compassion, interpreted my results correctly and was treating me successfully. I really told him about himself and told him that I was in fact the one who had wasted time and that if he had any shred of decency he would refund my money do to is malpractice. He did.

Ok....my vent here.

Just wanted you to know that a. YOU ARE NOT ALONE and b. THERE ARE GOOD DOCTORS OUT THERE.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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I hate to say this, but every doctor I've ever been to has acted absolutely stupid and arrogant at the same time: I don't know exactly when my self-diagnosed celiac began, but for my entire life every single time I wnet to a doctor, on hindsight, I could look back and see I was not really LISTENED to, misdiagnosed, mistreated, and all from an attitude of a know-it-all treating a moron.

Same with my experiences taking my child to the doctor. I don't know if she ever had celiac symptoms or not (she's now grown up and avoids gluten herself after watching how it was for me), but it was the same situation... doctors never listened to what I said about her, acted like I was way to stupid to have the sense to observe her symptoms or what was going on, and then proceeded to misdianose and mistreat... normally we ended up stopping the treatments and throwing the junk in the garbage, because it usually just made things worse... then we had to wait to get well on our own or just learn to live with whatever it was.

I've totally lost my faith in them. I can't stand to pay somebody to treat me like I'm delusional, emotional, stupid, while they make idiotic misdiagnoses and fumble around doing all the wrong things.

I think if you get completely off the gluten, totally 100% get it out of your life... then watch and see if things gradually get better... that's probably the best way to find out if it's responsible for your problems.

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I noticed you said that you went to Beth Isreal in Boston.....I live in MA, originally from RI. Get away from Boston docs. All their health records are linked in to one another (FI goes to Mt Auburn for his kidneys and BIDMC can see all his tests and doctors notes). I used Dr Margolis in Providence for a few years after I was diagnosed. If you're willing to take the drive down there, I'd give him a call. The only reason why I stopped seeing him was because I moved and just couldn't justify driving 2 hours to see him without giving any other doctors a chance. I'm also going to see a doctor at Newton Wellseley in a couple of weeks for the first time.

I'm so sorry to hear you going through this. You will find a great doctor!!!!


Jami

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I like many others here could have written your post. I was severely impacted neurologically and have also was labeled a psych case at a very young age when celiac induced depression caused me to commit suicide as a child. I had severe DH for 5 years before the depression hit me like a club one summer. I was told the DH was poison ivy that had gotten into my bloodstream, their explanation for why my legs and arms and face were covered in lesions even with snow on the ground. Fast track 30 years and I could barely walk due to the continued ataxia (your just clumsy!!) they finally did testing with needles and current in my legs and my right one was totally dead. You can't make your body kill off your nerves no matter how much of a psych case you are. The MRI revealed something they called UBO's, unidentified bright objects, doctors here just shrugged their heads and said lots of folks have them they mean nothing. Here have a prozac. In other countries these are diagnostic of celiac but not here in the US.

I won't even get into my 10 years of daily D and the 5 more that the D was daily and nightly with the nightly bouts waking me at 1 or 2 am and keeping me in the bathroom shaking and in so much pain I thought I would rupture. Oh and the arthritis that eventually kept me from even doing simple things like opening a jar or buttoning my shirt or holding a paintbrush or a glass cutter. Even at the end I was still considered someone who just wanted to go on disability, I never wanted to I just wanted the pain to stop and all the meds in the world didn't help.

I also was so angry at diagnosis that I even considered bringing a malpractice suit against my past doctors but a lawyer told me I could only sue the last ones I had seen and frankly I don't have the energy for it. I fought so hard to live for so ling I have no fight left. I just wish celiac on every last one of them and that they get the same wonderful treatment from their doctors that I got from them.

Additonally I agree with the advice to look for a doctor outside of Boston. My DD went to one because she wanted to have her diagnosis recinded. It is after all 'inconvienent' for a college student to be on the diet and she felt fine. She had been gluten-free for 3 years before the doctor tested her after a very short challenge. Even with the positive bloods and endo that she got from the doc here at home the doctor in Boston told her the diagnosis was false for 2 reasons. One her villi were still there, well of course they were she was gluten-free for 3 years!. And two that she didn't have DQ2 or DQ8 genes, well neither do I, I am a double DQ9 so she has to have one of those genes combined with one of whatever ones her celiac father has. She is back on gluten and although she had no symptoms for a year or so, can we say honeymoon period (the reason they thought we outgrew celiac) she now is experiencing the same problems as before but now 'they are all in her head and due to stress' after all a big wig celiac doctor told her she is fine. I worry but can do nothing about it. I just pray she opens her eyes and sees the light before she is permanently damaged like Mom.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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It is after all 'inconvienent' for a college student to be on the diet and she felt fine.

That was me when I was diagnosed. 20 years old....6 months before 21st b-day! Seriously I was PO'd like no one would believe. I've read a lot of posts about symptoms and what people went through before they were dx'd. I was dx'd due to some heartburn and constipation....and family history. Once my primary knew how many people in my family really had celiacs (she forgot to write down my aunt and cousin, just had my gma down) she had blood drawn ASAP. I have gone off the gluten-free diet (yes I know I shouldn't, I'm fixing that situation) and although I dont' ahve heartburn, I still have constipation and "gluten brain." It's hitting me more now that I'm a little older, getting married and want to have kids that I really need to take care of myself. If my new GI doc takes blood (and I'm staying on gluten until I have tests done so nothing is missed) and she tells me that I don't have celiac, I probably will punch her (ok, that's a little harsh I know, but I'll be pretty PO'd).

Boston Hospitals are good for a few things: transplants, cancer and joint replacements (gluten brain is getting to me right now). Anything else beyond that frankly I'd rather go to someplace else to deal with it.

I wish this thing was like yahoo chat, I would post a cut little huggie face for you :)


Jami

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I'm in a time crunch so I didn't have time to go read everyone else's reply (I will later), but I wanted to let you know, I know EXACTLY how you feel!!

When I was 15 I had a doctor lock me in a room (she was sending me to the state mental ward because I refused a vaginal exam). She told the staff NOT to call my mother (even though I was a minor), but 1 staff member knew my mom socially, and decided to call her. My mom had to BREAK her door to get to me.

When I was 22 I had an allergic reaction (to what I have no clue) where my lips swelled up. It happened overnight, and by 4am they were split open and bleeding. I went to the ER (after all, my lips are awfully close to my throat). I was told by the doctor, "you know, women pay THOUSANDS of dollars for lip augmentation, so consider yourself lucky" when I tried to argue that I wasn't one of those women, he actually did the "talk to the hand" motion. My husband had to physically escort him out of the room. A dermatologist (that we found on our own later that day) gave me shots in my lips and did a biopsy (to rule out anything super serious), when we found out for sure that it was an allergic reaction, I went to 2 allergists. The first refused to do any testing beyond asking me what lipstick I use (I dont use any). The 2nd said the same but offered pills. I told her that DH and I are TTC so we didn't want anything I couldn't take if I got pregnant. She said we were too young for children but she would give us the right meds anyway. I googled the script when I got home (before filling it). In big bold letters their website said, "DO NOT TAKE IF YOU ARE PREGNANT, MAY BECOME PREGNANT....." WTF

This was in addition to the doctors I was seeking out as a result of my Celiac symptoms. I lost count after 12 doctors or so (from the time I was 15-22). I got a lot of "well do you go to church? you should read the bible, it would help you a lot" and a lot of, "well you must be depressed". I was diagnosed with Borderline Personality Disorder and I even went through a Dialectical Behavioral Therapy program. The therapist there was the first person to say, "hey there is something physically wrong. Just because doctors can't find it doesn't mean it's not there."

FINALLY I googled my symptoms (thank you google!). I decided to go gluten-free for MYSELF. After a week I had my last appointment with a doctor (to discuss "other options" for me). I told him I wouldn't leave his office until he ran the Celiac panel. He finally did. Guess what? I got a positive blood test after a week of gluten-free! But he told me that it wasn't serious enough to stop eating gluten. It's so hard.

Yeah, but instead of out of breath, passing out, unable to walk, and DYING I'm healthy, vibrant, and HAPPY!!

Unfortunately we still have to deal with doctors because DH and I are struggling with infertility. Sometimes life just isn't fair.

I wish you all of the luck in the world. Let doctors go, they suck. Please, PLEASE stay strictly gluten-free. Your body will thank you.

Oh, and welcome!!

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I think I saw a Seinfeld episode like this. Elaine went to the doctor, they thought she was being difficult so they sent her away. The next doctor looked at her charts, saw the previous doctors comments and so on and so forth.

You are your own doctor. Most of what you need to get you on the path to wellness you can find for yourself. You've found this site and will no doubt learn a ton. Get going on the gluten-free diet but keep in mind there are many many variables and you will need to be able to adapt.

My own experience turned out not to be Celiac but I was greatly helped by eliminating gluten from my diet. I am not 100% but I am getting close. Our western diets including gluten are problematic for most of us.

For the record - I think most doctors are in the "business" NOT to help people. Money and stature drive that train. If you don't believe me why is there a crisis brewing with the lack of new doctors becoming family practitioners. They all want to specialize to make more money and avoid the lawsuits. Specialization is what's giving us such bad health to begin with. Once doctors start treating the body as a complete system of non-independent parts our health will improve. Until then, you will have to take care of yourself I am afraid.

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I could spend days going over all the BS I have put up with in regards to the medical community during the last 15 years. I don't have the energy ;)

You are SO not alone, unfortunately. I think Drs are arrogant and rude and most of them I have been tempted to kick :rolleyes:B)

Breathe and hang in there YOU ARE WORTH IT!!


Collette

Positive Bloodwork Oct 1st 2007. Gluten-free 3 YEARS Oct 1st!

Dairy & Soy free since Dec 1st 2007.

Potato free since January 3rd 2008.

Remaining Nightshades since April 1st 2008. Back on September 2010. :)

Developed Rice & Tapioca & Corn Intolerances...

NO Carageenan.

In a constant state of evolution... sending love! :)

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I'm in a time crunch so I didn't have time to go read everyone else's reply (I will later), but I wanted to let you know, I know EXACTLY how you feel!!

When I was 15 I had a doctor lock me in a room (she was sending me to the state mental ward because I refused a vaginal exam). She told the staff NOT to call my mother (even though I was a minor), but 1 staff member knew my mom socially, and decided to call her. My mom had to BREAK her door to get to me.

When I was 22 I had an allergic reaction (to what I have no clue) where my lips swelled up. It happened overnight, and by 4am they were split open and bleeding. I went to the ER (after all, my lips are awfully close to my throat). I was told by the doctor, "you know, women pay THOUSANDS of dollars for lip augmentation, so consider yourself lucky" when I tried to argue that I wasn't one of those women, he actually did the "talk to the hand" motion. My husband had to physically escort him out of the room. A dermatologist (that we found on our own later that day) gave me shots in my lips and did a biopsy (to rule out anything super serious), when we found out for sure that it was an allergic reaction, I went to 2 allergists. The first refused to do any testing beyond asking me what lipstick I use (I dont use any). The 2nd said the same but offered pills. I told her that DH and I are TTC so we didn't want anything I couldn't take if I got pregnant. She said we were too young for children but she would give us the right meds anyway. I googled the script when I got home (before filling it). In big bold letters their website said, "DO NOT TAKE IF YOU ARE PREGNANT, MAY BECOME PREGNANT....." WTF

This was in addition to the doctors I was seeking out as a result of my Celiac symptoms. I lost count after 12 doctors or so (from the time I was 15-22). I got a lot of "well do you go to church? you should read the bible, it would help you a lot" and a lot of, "well you must be depressed". I was diagnosed with Borderline Personality Disorder and I even went through a Dialectical Behavioral Therapy program. The therapist there was the first person to say, "hey there is something physically wrong. Just because doctors can't find it doesn't mean it's not there."

FINALLY I googled my symptoms (thank you google!). I decided to go gluten-free for MYSELF. After a week I had my last appointment with a doctor (to discuss "other options" for me). I told him I wouldn't leave his office until he ran the Celiac panel. He finally did. Guess what? I got a positive blood test after a week of gluten-free! But he told me that it wasn't serious enough to stop eating gluten. It's so hard.

Yeah, but instead of out of breath, passing out, unable to walk, and DYING I'm healthy, vibrant, and HAPPY!!

Unfortunately we still have to deal with doctors because DH and I are struggling with infertility. Sometimes life just isn't fair.

I wish you all of the luck in the world. Let doctors go, they suck. Please, PLEASE stay strictly gluten-free. Your body will thank you.

Oh, and welcome!!

There is a real good book that I read after several miscarrages I think it was called Getting Pregnant or something in that order, I am not sure they mention Celiacs ( they should) but luckily I did have a good Dr. Except for the Celiac part. I think Doctors simply do not know about it.


gluten-free/CF 5/8/08

Multiple food Allergies

Chemicle Sensitivity Syndrom

I suposedly have IBS

Psilly page member

Crohns

Celiac (duh)

"My llamas are in me head... "

-Llama`Llady

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I have to add that rarely do I find threads that bring me tears, but this one does. It is so good to know that I wasn't alone in my struggles but heartbreaking to know that so many others have suffered the same.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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If I had to write about all the horrible Doctor , Hospital experiences i had there would be no end to it. I simply could not sleep from the anxiety I had because of their misdiagnosis. The thing that gets me the most is the social stigma about having GI problems. The thing is I think Doctors have it too. I think they rather say it is in your head to avoid the ambarasment that goes along with it. Also the truth is your Gut does effect your Psychelogical /mood and if you eat the right food then you feel better. There is a funny episode on Signfeld that Elaine gets Dxed with Anxiety, her Medical record follows her wherever she goes, it is very funny. Just remember that they might have a disease as well that they can not diagnose or treat.

All this said nobody has the right to treat a patient with disrespect,ever.


gluten-free/CF 5/8/08

Multiple food Allergies

Chemicle Sensitivity Syndrom

I suposedly have IBS

Psilly page member

Crohns

Celiac (duh)

"My llamas are in me head... "

-Llama`Llady

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Unfortunately we still have to deal with doctors because DH and I are struggling with infertility. Sometimes life just isn't fair.

don't know how long you've been TTC but i just wanted to encourage you. it took 3 years to get pregnant with my daughter who is now 5. the time it took to concieve has worked as a reminder of just how special she is when I get overwhelmed or when she is misbehaving :) I got pregnant again when she was 7 months old (I was thinking its not gonna happen that soon so why try to be careful!?) anyway he is gonna be 4 in July. I also have an 18mo. old who also was concieved by not being carefu. eventually you will have a beautiful child and then maybe a few more special babies who were not planned for but will be delightful just like the first. hang in there and don't let people's inconsiderate comments and questions dishearten you.

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Ive also trusted and been burned by doctors I thought were on my side.

I will never forget looking into my gynocologist of 8 years eyes when he said I could be dead in 6 months from some pre-cancerous cells on my cervix. I could see in his eyes he was lying. He was pushing surgery so hard and trying to scare me. Very invasive and reproductive disfiguring surgery. When I told him I wanted a "second opinion" he threw my chart on the floor and walked out. I got dressed and left and have not seen him in 7 years!!!!

I thought about it later and remembered while I was waiting in the waiting room, one of the office staff asking his wife (office manager) how they were enjoying the new boat. I couldnt help but feel that somehow my unnecessary surgery was going to help finance their lifestyle. It really made me angry.

And I didnt need any surgery at all. My cervix healed just fine with nutritional supplements and visualization therapy. I get PAPs 2 times a year and for the past 6 1 /2 they have been clean. After I did some research, I discovered that the cells I had go away on their own 50% of the time without ANY treatment at all. Bastard! He failed to give me this information. And when I asked him if I could try a natural approach for a few months, that is when he said I could die.

Yeah I have issues with doctors. Yeah I do.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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Ive also trusted and been burned by doctors I thought were on my side.

I will never forget looking into my gynocologist of 8 years eyes when he said I could be dead in 6 months from some pre-cancerous cells on my cervix. I could see in his eyes he was lying. He was pushing surgery so hard and trying to scare me. Very invasive and reproductive disfiguring surgery. When I told him I wanted a "second opinion" he threw my chart on the floor and walked out. I got dressed and left and have not seen him in 7 years!!!!

I thought about it later and remembered while I was waiting in the waiting room, one of the office staff asking his wife (office manager) how they were enjoying the new boat. I couldnt help but feel that somehow my unnecessary surgery was going to help finance their lifestyle. It really made me angry.

And I didnt need any surgery at all. My cervix healed just fine with nutritional supplements and visualization therapy. I get PAPs 2 times a year and for the past 6 1 /2 they have been clean. After I did some research, I discovered that the cells I had go away on their own 50% of the time without ANY treatment at all. Bastard! He failed to give me this information. And when I asked him if I could try a natural approach for a few months, that is when he said I could die.

Yeah I have issues with doctors. Yeah I do.

You are lucky , I had a doctor who said that if I did not take the pills he perscibed me ( which I was allergic too that he would not treat me) I told his secretary that I would not see him unless he checked me propperly this time . He would start a conversation ( I was paying out of pocket) then keep asking more stuff How I was doing bla bla bla and then when I would say what about the test, he would say you know you talk too much and we are out of time. he too has probably lots of expensive hobbies and no soul. One day when he gets sick he might regret treating all the women he mistreated.


gluten-free/CF 5/8/08

Multiple food Allergies

Chemicle Sensitivity Syndrom

I suposedly have IBS

Psilly page member

Crohns

Celiac (duh)

"My llamas are in me head... "

-Llama`Llady

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I'm one of the lucky ones. After 20 years of Hashimoto's thyroiditis. I developed a terrible rash (most likely DH). I googled "thyroid and rash" and found thousands of hits about celiac. The first ones were from this very board.

This board literally saved me from the kind of suffering you guys went through.

However, the dermatologist laughed at me when I came to my appointment with my celiac.com printouts. I had to beg him to run the celiac tests (which he did without telling me that my having been gluten-free for a month might screw up the results).

He had his assistant call me to tell me my bloodwork was normal. I didn't find out that he lied until I went to my endocrinologist the next week. I had requested that she receive a copy of the bloodwork.

I told her that the dermatologist had ruled out celiac, and she looked up from the bloodwork and said, "No, this says that you HAVE celiac, or at least a major problem with gluten." (My IgG was 4 times the normal limit.)

There was absolutely no chance he could have misread the bloodwork. It was very clear, and the lab report even stated the prevalence of celiac disease with high IgG.

I am sorry you have been put through hell by someone who was supposed to take care of you. All I can offer in explanation is that it seems that quite a lot of abusive personalities go into medicine. But there are good ones out there, too!

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This reminds me of the time a dr. said that my leg was not broken . i insisted that the Physio Therapist said so, I had to beg and plead for him to take an x-ray, he finally agreed , I had to walk upstairs grinding my teetth in pain to hand deliver the results. He kept staring at the x-ray he was behind the wall and I was waiting in the room, so I finally said hey Doc. is my leg broken or what : Yeh you are right you have a fracture right there luckily it has not shifted. :rolleyes: I did not hear sorry, actually I have never heard a Doctor say sorry.


gluten-free/CF 5/8/08

Multiple food Allergies

Chemicle Sensitivity Syndrom

I suposedly have IBS

Psilly page member

Crohns

Celiac (duh)

"My llamas are in me head... "

-Llama`Llady

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Oh, yeah, that reminds me of the orthopedist who patted me on the head and said I'd be fine, he didn't need any additional tests, he knew what was wrong, I had dislocated me shoulder. (Um, yeah, I already knew that, and the ER doc had put it back in place the week before and told me to follow up with an orthopedist to rule out tissue damage.) He said I should keep it immobile for a month and then start physical therapy.

Since I'm a violinist, and need my shoulder to earn a living, I begged for an MRI, but he insisted he didn't need one.

6 weeks later, the physical therapist had to write him a nasty note, saying an MRI was needed. Turned out, the tendon was torn off the bone.

Needless to say, I switched orthopedists.

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