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probonohoe

Anyone Misdiagnosed?

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I was wondering if anyone has been misdiagnosed before finding out they had Celiac disease.

My husband has been sick for years...since 2000 actually. 2 years ago he was finally given a diagnosis of Crohn's disease, but nothing is helping him. I was looking for alternative medicines when I found a snippet about someone being misdiagnosed with Crohn's and really having Celiac disease for 10 years or something ridiculous.. I just want to see if Celiac disease is as under/misdiagnosed as I've read so far.

I want to talk to my husband's GP on Monday to confirm that he has been tested for this disease during that 4 years of being "mystery man"-but I'm hoping that he has been misdiagnosed then we have more options to get him better....

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So far I have been diagnosed with IBS. My last doctor told me that all I needed was a phyciatrist. My tests come back next week so I donno if I have Celiac yet. I have many many diagnoses of other things such as migraines, 3 month preemie, nerve damage, etc. My understanding is that many or well most people are misdiagnosed to start with aned the avg diagnoses is something like 10 years. It is said that around 95% of people are either misdiagnosed or have no idea that they have celiac.


Myself-Age 25....I have had symptoms since at least 1998 if not since infancy (was diagnosed with malnutrition as a small child)...Positive results with gluten free diet!

Hannah-Age 5.....Has symptoms....Inconclusive blood tests....Positive diet response to both gluten free and lactose free!

Grace-Age 1.....Born at 29 weeks due to me having celiac....Has reflux and a feeding tube.

Husband-Not Celiac......has found that he does feel better when not eating allot of gluten.....is gluten free at home.

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Celiac, missed dx.........it took most of us many, many years to arrive on the proper dx to identify what we are dealing with.

Please check this site and explore, read the posts and perhaps you can come upon the answers that you need.

It is a complex disease, but it can be controlled with the proper diet.

Please ask away.

Lisa


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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IBS, lactose intolerance, and "it's in your head" are all very common misdiagnoses of celiac disease.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I have got both the its IBS and its all in your head. although nothing that they tried for IBS worked and seeing a counselor didn't make my stomach feel better. now that i know what it is however, she is helping me deal with it.

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I've been told one of three things since I was a child:

1. you have a virus (my folks thought I caught everything that sent around)

2. you have food poisoning (thought I had an extremely sensitive stomach)

3. nothing is wrong with you go home

I was 44 when I was finally diagnosed with celiac disease


“This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws.”

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I don't think I was misdiagnosed, more like dismissed. I've been to 10 doctors in 6 years (I'm 22yrs old), including a GI (gastrointerologist) and a sleep specialist. Most of them either said I was "fine", or said it was a "mental problem". I went to a psychaitric nurse practitioner and 5 different therapists. I was dxed with everything from borderline personality disorder to depression. Finally, I went to my last therapist (in a program specializing in borderline people), who used to work in a chronic pain management program. He and the nurse practitoner were the ones who truly helped me. They actually believed me!!

Ur hubby isn't alone, you are not alone!! It's frustrating that dr's so easily assume their patients r either dumb, drug seekers (yup that happened too), or insane!

Well that's my story, hope u liked it :)

Oh ps: my husband always had HORRIBLE stomach pains and bad D, which his mom dismissed as "normal" and told him to stop complaining. After we made the house gluten free, all that magically stopped! I guess he was mis"diagnosed" as well!

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My stomach problems were always "stress", and my skin rash was misdiagnosed for 2 years (it's DH, but was called everything from folliculitis to "some kind of dermatitis" to "an outward expression of my emotional distress").

ETA: I had the "stress" related stomach problems for 10 years before my actual diagnosis.


Carolyn

"When the going gets weird, the weird turn pro. "

- Hunter S. Thompson

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Here too -- hubby misdiagnosed for 27 years.

It's a sad fact.

Last gastro he went to diagnosed him; one before that told him that he needed mental help for his "food issues." he didn't even want to be told there was malabsorption going on.

Let me stop before I get accused of doctor bashing because I just can't help going in that direction when I think of all the incompetent & imperious doctors he's been to in those 27 years. (Like care what others think! ha! :lol::P


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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I was wondering if anyone has been misdiagnosed before finding out they had Celiac disease.

My husband has been sick for years...since 2000 actually. 2 years ago he was finally given a diagnosis of Crohn's disease, but nothing is helping him. I was looking for alternative medicines when I found a snippet about someone being misdiagnosed with Crohn's and really having Celiac disease for 10 years or something ridiculous.. I just want to see if Celiac disease is as under/misdiagnosed as I've read so far.

I want to talk to my husband's GP on Monday to confirm that he has been tested for this disease during that 4 years of being "mystery man"-but I'm hoping that he has been misdiagnosed then we have more options to get him better....

OH YES!! First an actual GI DR. (so much for him knowing about the GI tract) told me it was "IBS from stress", then it was "HHmmmmmmmmmm...i think you have a bacterial infection", then it was "i think you have ulcerative colitis", then i went to a different Dr. who said "it's just your whole GI tract because it starts with heartburn and ends with d" (i was like no crap you idiot, that's why i'm here), then i went to my dad's holistic dr. who went over all of my symptoms and he said, "guess what? I'm 99.9% positive you are glutent intolerant" and low and behold there it was...he was right :)

OH, and bye the way, one of the informational sheets he gave me had different symptoms of a glutent intolerance, and "Colitis" and "Crohn's" were listed as false diagnosis because the intestinal damage we've done over the years so closely mimics the side effects of those diseases...BUT THAT'S NOT WHAT IT IS!! Try doing a www.google.com search using the following words crohns colitis celiacs


Gluten Free...negative blood results...absolutely positive diet results.

Dairy Free...absolutely positive diet results.

Egg Free...there goes another one...absolutely positive diet results.

Allergic to Codeine.

"Life is like a box of chocolates...you never know which ones may have gluten in them:)"

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Guest nini

I was 34 before I was accurately dx'ed with Celiac. Before that for years I was a "hypochondriac" it was "all in your head" it's just "IBS" and on and on... I was dying before my dx... now I'm finally beginning to live.

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I was 36 and had to figure it out for myself. I went to dozens of doctors and all they wanted to do was write lots of prescriptions.


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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I was misdagnosed with fibromyalgia. I now think fibromyalgia is a fine diagnosis if it's used as a starting point to figure out what's really wrong and causing all fatigue and pain. But my doctor treated it as an end diagnosis and didn't do further investigation. I was the one who kept investigating.

I also was diagnosed with depression which was correct but also had a root cause of celiac.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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I"m almost in tears. There is so much I want to say, and I'm stunned at the response. Not to make light, but I really hope he has Celiac and not Crohn's, cause we have hit a brick wall with Crohn's. He doesn't even have a GI anymore, he's been abandoned. The only one who cares is his GP, and wow almost every doctor in this town has either called him a "drug seeker" or "its all in your head" (those words exactly :)

one time he threw a big stack of money he had in his pocket at a doctor and yelled," if i want drugs i'll go buy them!!!"

The only question now is whether or not his old GI tested him already when they were trying to find out what was wrong with him. On Thanksgiving weekend, we have to wait until Tuesday to find out.

All signs are pointing towards Celiac now, I got Corey to read some information I found and he said it was more accurate than Crohn's. His mother has had health problems her whole life has been diagnosed with thyroid and rheumatoid arthritis, and some kind of IBS-and I guess if she wants to eat a pizza she has to prepare for it a week ahead. Could she have it too? Could I have stumbled on the secret of ending this nightmare? I remember someone tellling him to eat whole wheat bread=-and that really helped. He can't eat white flour at all now, everything is whole wheat and after some quick research-wow-whole wheat has less gluten!! Can it all be a coincidence?

Right now he's going to the hospital at least once a week, pumped full of morphine, and sent home because the only doctor who comes to see him is his GP. I'm sure everyone here has volumes of horror stories with doctors and hospitals....

So now I wait. And hope that this is the key to starting a happier life, cause if he's already been tested or gets come back negative I don't know what we are going to do....

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I"m almost in tears. There is so much I want to say, and I'm stunned at the response. Not to make light, but I really hope he has Celiac and not Crohn's, cause we have hit a brick wall with Crohn's. He doesn't even have a GI anymore, he's been abandoned. The only one who cares is his GP, and wow almost every doctor in this town has either called him a "drug seeker" or "its all in your head" (those words exactly :)

one time he threw a big stack of money he had in his pocket at a doctor and yelled," if i want drugs i'll go buy them!!!"

The only question now is whether or not his old GI tested him already when they were trying to find out what was wrong with him. On Thanksgiving weekend, we have to wait until Tuesday to find out.

All signs are pointing towards Celiac now, I got Corey to read some information I found and he said it was more accurate than Crohn's. His mother has had health problems her whole life has been diagnosed with thyroid and rheumatoid arthritis, and some kind of IBS-and I guess if she wants to eat a pizza she has to prepare for it a week ahead. Could she have it too? Could I have stumbled on the secret of ending this nightmare? I remember someone tellling him to eat whole wheat bread=-and that really helped. He can't eat white flour at all now, everything is whole wheat and after some quick research-wow-whole wheat has less gluten!! Can it all be a coincidence?

Right now he's going to the hospital at least once a week, pumped full of morphine, and sent home because the only doctor who comes to see him is his GP. I'm sure everyone here has volumes of horror stories with doctors and hospitals....

So now I wait. And hope that this is the key to starting a happier life, cause if he's already been tested or gets come back negative I don't know what we are going to do....

First off, he more than likely got it from his mother becuase it is hereditary (mine came from my dad), and the more you look at people on here and their diagnosis you will see that tons of family members also have it. The thyroid, arthritis, and IBS are all associated with this glutent problem as well, so his mom will probably end up on the same diet.

Second of all, all the celiac or gluten blood tests, biopsies, etc... in the world can very easily come back negative. Following a gluten free diet is the only very accurate test available, but i do suggest not starting the diet until any tests he wants to have done have been taken care of so there's still tons of gluten in his system (you'll get more accurate results this way).


Gluten Free...negative blood results...absolutely positive diet results.

Dairy Free...absolutely positive diet results.

Egg Free...there goes another one...absolutely positive diet results.

Allergic to Codeine.

"Life is like a box of chocolates...you never know which ones may have gluten in them:)"

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First off, he more than likely got it from his mother becuase it is hereditary (mine came from my dad), and the more you look at people on here and their diagnosis you will see that tons of family members also have it. The thyroid, arthritis, and IBS are all associated with this glutent problem as well, so his mom will probably end up on the same diet.

Second of all, all the celiac or gluten blood tests, biopsies, etc... in the world can very easily come back negative. Following a gluten free diet is the only very accurate test available, but i do suggest not starting the diet until any tests he wants to have done have been taken care of so there's still tons of gluten in his system (you'll get more accurate results this way).

I agree, don't accept negative test results as a final answer. I'm waiting for my son's results from Entero Lab. It's so frustrating and believe me we've all been there. We're not all crazy!!! It's so comforting to know that others can empathize with you. It's weird to read everyone's stories and you can relate. I had that rash called follictulitis in college. My son has had mouth sores for 5 years and always has been a "puker". Sorry for the visual. I will get his results from Enterolab in 2 weeks. I hope I can finally fill in some of the missing pieces to this puzzle. We had the blood work done by 2 doctors for my son. The first one ran the wrong test and the second dr. tried to tell me it would be accurate even though he had been gluten free for a month. WRONG!!!!!!! Educate yourself. These doctors admitted to me that they were wrong and that I know more than they do. Pharmaceutical reps really educate these doctors on recent studies and breakthroughs in medicine. Unfortuneately no one is talking about Celiac because there's no drup to treat it. Hang in there!!!!

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You are absolutely right. I think I've learned enough about doctors to know they think they know more than they do. Corey just phoned his mom and told her about Celiac disease-she is nothing short of ecstatic. She is getting tested this week. (Her doctors simply don't know what to do for her and her diagnoses change like underwear) <_<

I do agree though, even if his tests come back negative we will follow a gluten-free diet to see how he does. I mean if he was just willing to drink pig whipworms from Germany for Crohn's disease I think he can manage a new diet :D

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:lol: sorry i should clarify...pig whipworm EGGS...its true

double eeehhww :ph34r:


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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You are absolutely right. I think I've learned enough about doctors to know they think they know more than they do. Corey just phoned his mom and told her about Celiac disease-she is nothing short of ecstatic. She is getting tested this week. (Her doctors simply don't know what to do for her and her diagnoses change like underwear) <_<

I do agree though, even if his tests come back negative we will follow a gluten-free diet to see how he does. I mean if he was just willing to drink pig whipworms from Germany for Crohn's disease I think he can manage a new diet :D

I'm not sure if you know this, but just in case...i myself don't "qualify" for straight celiac's disease, but i have a gluten intolerance. I've never had hives, rashes, mouth blisters (although i've had the occasional canker sores if that's the same thing) etc... but i have had headaches, brain fog, leg cramps, major diarrhea, "colitis like" problems, etc... Some of us have a gluten intolerance but not actual celiacs disease. Regardless, it's pretty much the same thing. The way my dr. explained it to me is like this: People with celiacs disease cannot create (their body cannot create) the necessary enzyme to breakdown gluten. People with a gluten intolerance (like myself) can create the enzyme but our bodies still react profusely to gluten. Regardless, it's the same diet with most of the same symptoms. Once he starts the diet it can take up to two years for his intestines to heal from all of the damage. All of the crohn's symptoms should heal and hopefully vanish by then. I've been on the diet for 4 months now, and the bloody d (probably more dark or tar like for his symptoms?) has pretty much been gone for the past month, now i'm just trying to cure the IBS. Just thought i would fill you in ;)


Gluten Free...negative blood results...absolutely positive diet results.

Dairy Free...absolutely positive diet results.

Egg Free...there goes another one...absolutely positive diet results.

Allergic to Codeine.

"Life is like a box of chocolates...you never know which ones may have gluten in them:)"

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The way my dr. explained it to me is like this: People with celiacs disease cannot create (their body cannot create) the necessary enzyme to breakdown gluten.

Actually, with Celiac Disease, ingesting gluten triggers an autoimmune response in which the body attacks and damages the small intestine. The gluten clears the body, but the autoimmune reaction can last for weeks, even if the symptoms don't last that long. Some people feel ill for a day or two, others can be sick for a week or two.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Just wanted to add, test results mean little to nothing! My blood tests came back positive. I'm not doing the endoscopy (I have sleep apnea, I feel it's too risky), but my diatery response has been amazing. My husband went gluten free with me and HE feels amazing. He's chosen not to get the any testing cause he'd have to go back on gluten and he's not willing to do that.

Don't worry so much about the tests, if the diet helps, go with it.

Keeping my fingers crossed for u.

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alright a little update here and another wonderful hospital story

Corey had to go in last night, I had to stay home since i'm pregnant and sick.

Corey:" What do you mean you are giving me Buscopan? I've been waiting for 5 hours and you want to give me Buscopan??" (He ended up getting morphine thankfully)

Corey: "I already told you not to bother testing my red blood cells. They always come back fine, even an hour before my surgery when I had a hole in my bowel (that they didn't know about until after they removed it of course). You are wasting money."

Doctor: "Oh well you have Crohn's we have to make sure everything is ok.'

Corey: "I already told you I don't think I have Crohn's. Are you listening?"

Corey:" Are you going to test me for Celiac disease?"

Doctor:" No that's for your GI to do."

Corey:" I already told you I don't have a GI. No one will take me. Are you listening?"

And that about sums it up. He's home now and sleeping. :blink:

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I'm so sorry your husband is going through this. If he can't get anyone to test him for Celiac, I would suggest trying a gluten-free diet and maybe getting some basic tests done through Enterolab. I'm not one to think that continuing to eat gluten just so some tests may come back positive is a good idea. I hope this is the answer!

BTW-I was told I had "colitis", then IBS, then told it was all in my head and that I was fine and that I should just take Tums and be quiet. I've never had an official diagnosis because I went gluten-free before I knew about the testing. But I'd never consider eating gluten again just to get tests done.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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