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moonunit

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First GI who actually suspected Celiac and ran panel but didn't tell me at that time - Celiac Sprue is very rare, it's an allergy to wheat and you need to be of Scottish heritage to get it.

Hemotologist (after finding out I have very light monthly cycles) - Some women just get anemia, I promise once you get through menopause, the anemia will go away - until then keep taking iron. Great doc I'm only 42 so I have another 15+ years of iron pills and the extra fiber they require.

Second GI who diagnosed me, after reading me my biopsy report over the phone (classic case of Celiac disease) - Well now the question becomes, do we prescribe the gluten free diet to someone who had not severe GI symptoms? Me - well if I continue to eat gluten won't I get those bad symptoms eventually? Yes you probably will, you should start the diet now...you can still have corn and potatoes...call me in six months and we'll do another biopsy to make sure you're following the diet. He did not offer any help in getting started by the way.

Shirley's guy still takes the cake! Service your husband! Give me a freakin' break! What an absolute moron!


Dx'd with anemia - March 2005

Positive blood tests - Sept. 2005

Positive biopsy - Jan. 2006

Gluten free since 1-23-06

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Wow, these are outrageous! In a totally sad and disgraceful way, of course... I just knew there were some doozies out there to be heard. Professional writers couldn't make this stuff up. It baffles me!

I thought of another one. My nurse when I was waiting to see my primary care asked what I was there for, and I said that I had a family history and symptoms of celiac disease so I was getting tested. She asked "what's that?" So I gave the 10-cent answer that it was an intolerance to gluten, which meant you couldn't ever eat wheat again for the rest of your life.

She said, "Oh, that's not true, I'm sure you can just take a pill or something before you eat."

Dude, BEANO won't fix this thing! Way to give someone who hasn't read up on it false hope out of pure ignorance! Yeesh!

I also heard someone today say they knew someone with celiac disease, and "they had to go off gluten for like 6 to 9 months! She's fine now so she can take it again." I don't know this lady very well, but I will try to gently get the info to her indirectly so her friend doesn't do further damage to herself.

Sigh...


Diagnosed + via Enterolab, + via serology, - by doctors

gluten-free since August 2006 (with a test run from March-June)

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:lol::lol::lol::lol:

Oh man, thanks guys! I am TOTALLY HOWLING reading this thread!!! This is exactly what I needed after the last few days!

You guys always pull me through when I hit rough spots......

"Dude! You TOTALLY have celiac disease" :lol::lol::lol:

Oh, I'm dyin' here! That's gut-splitting!!!! :lol::lol:

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Oh the things that college health center doctors will tell you:

After telling the doc that I threw up a lot, "Are you sure you don't have an eating disorder?"

Apparently 19 year old girls can't be sick. Make an appointment to see the nutritionist.

After rating kind of low on one of those exhale and make the ball rise tests, without any athsma symptoms "I'm going to put you on a daily inhaled steroid"

"You're anemic, but it's probably because you're a woman." Nevermind that I had been on the pill 5-6 years and my periods were really light

Upon seeing that my red blood cells were small, "You have spherocytosis, a genetic disorder that effects those of middle-eastern and mediterranian descent" This was the look I gave her: :huh:

I had to make sure she was looking at me, because I'm white as a ghost and am a total WASP, with the exception of my 16% native american blood. Try again, idiot.

After an endoscopy and the GI doc put me on nexium (teeny ucler from too much advil and no esophogeal damage) and the glass-digesting pain came back near the end of the course of nexium, his nurse said, "That shouldn't be happening. You must not be taking it right."

"your platelets came back high, but I'm sure it's nothing to be concerned about"


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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I went to a doctor here on Long Island and was telling him I have celiacs disease and he says, "My son has celiacs too, he can't have barley!" :unsure: I truly hope he does know the difference. I did tell him that in addition to the regular glutens we can't have that I also can't have soy, corn, and tomatoes. I hope he was listening to me, I have the feeling he just keeps barley away from the little guy. Deb

This maybe a stupid question. Are you saying you can't have soy, corn and tomatoes or that everybody gluten intolerant shouldn't have these things. I have never heard that before and I have been doing the gluten-free diet for 3 years now.

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Let me see. The GI I saw 8 years ago with my Pernicious Anemia said: "This is all in your head you are insane."

The GP prior to that told me for a year; "You are going through menopause, you have the flu." I had neither.

The specialists who refused last year to to do anything about the nodules for my hypothyroidism said: "We want them to get bigger before we will do anything."

The Dermatologist who I forced to do a skin biopsy on my DH said: "DH only appears on the elbows and you are too fat to have Celiac because Celiacs are skinny children."

I proved him wrong, like I proved all the rest wrong


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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Guest stef 4 dogs
AAACK!

I had a great GP that told me I was mental for about a year! She said if I got a hobbie and stopped imagining peripheal neuropathy, and imagine a bloated belly and imagine I had mono (confirmed by blood test no less) and stop imagining I was gaining weight because I was hypo thyroid(also confirmed by blood test) and stop saying I was anemic even though I was and START believing I was healthy I would become healthy by believing it! Then I just agreed to well, just agree! and I said fine give me some antidepressant then to help me and she had the nerve to tell I didn't need drugs! OH MY GOD! And yes she still practicing. A preoccupied psychic on the 1-800 line could have done better!

Stef 4 Dogs

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Age 62, no symptoms

My long-time sickly sister was finally diagnosed with celiac, so I went to my GP to ask about having myself tested. He said "there is no blood test for celiac" -- when I told him there WAS, he went out of the room and came back with a paperback book (Doctoring for Dummies, I guess) -- he searched the book and confirmed that, no, there was no celiac blood test

I went ahead on my own and got the DNA test, and was positive for half of one of the markers.

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From GP....."The way they diagnose celiac disease is by trying the gluten-free diet and seeing if it works"

From the GP who was trying to explain the gluten-free diet....."You can still eat pasta!"

From the 1st GI while discussing malnutrition and C...."Well you can't be malnurised uless you have D"

My reply......"what about the whole damaged small intestines thing?"

His reply....."Well yeah, there is that"

:rolleyes:

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Age 62, no symptoms

My long-time sickly sister was finally diagnosed with celiac, so I went to my GP to ask about having myself tested. He said "there is no blood test for celiac" -- when I told him there WAS, he went out of the room and came back with a paperback book (Doctoring for Dummies, I guess) -- he searched the book and confirmed that, no, there was no celiac blood test

I went ahead on my own and got the DNA test, and was positive for half of one of the markers.

As far as things said by people who should not have passed their medical boards, you win. :rolleyes:


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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Age 62, no symptoms

My long-time sickly sister was finally diagnosed with celiac, so I went to my GP to ask about having myself tested. He said "there is no blood test for celiac" -- when I told him there WAS, he went out of the room and came back with a paperback book (Doctoring for Dummies, I guess) -- he searched the book and confirmed that, no, there was no celiac blood test

I went ahead on my own and got the DNA test, and was positive for half of one of the markers.

Hi Dad, I didn't know you joined the board! Hehehe!

You gonna go get the blood work done from a reputable ACTUAL doctor now, or do I have to sic these guys on ya? ;)

(Oh, and just to stay on topic, I'll add a new quote from yesterday... "If I had known you'd get in so quickly to have the biopsy done, I never would have ordered the blood test for you at all because it's really not necessary!" Well no, not the 1/4 outdated panel you did, according to NIH directives you're right, it's not very helpful at all.)


Diagnosed + via Enterolab, + via serology, - by doctors

gluten-free since August 2006 (with a test run from March-June)

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My older daughter was severly ill from 6 years old until 16 years old when I figured it out and had her tested. I had her younger sister tested and she is celiac too. So, when I handed the doctor (actually avery good pediatrician) the results and said, "she has celiac," She said, "Wow, that is really rare; you seldom see that."

My older daughter was severly ill from 6 years old until 16 years old when I figured it out and had her tested. I had her younger sister tested and she is celiac too. So, when I handed the doctor (actually avery good pediatrician) the results and said, "she has celiac," She said, "Wow, that is really rare; you seldom see that."

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And this from a gastric specialist

"There is nothing wrong with you, go home and service your husband and look after your children and quit spending so much time thinking about yourself"

I was 89 pounds at the time :huh:

Shirley:

Did you slap him in the face. How inappropriate! I would tell everyone I knew what an insensitive goof he was. I might even stand outside his office with a sign warning potential patients. How disgusting!

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Age 62, no symptoms

My long-time sickly sister was finally diagnosed with celiac, so I went to my GP to ask about having myself tested. He said "there is no blood test for celiac" -- when I told him there WAS, he went out of the room and came back with a paperback book (Doctoring for Dummies, I guess) -- he searched the book and confirmed that, no, there was no celiac blood test

I went ahead on my own and got the DNA test, and was positive for half of one of the markers.

ROFLMAO :lol::rolleyes: Doctoring for Dummies, I love that.

Shirley: What were you a prize hefer?


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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Here are a few of the things some of the doctors have said to me over the years:

"You have IBS and there is no treatment for that (18 years ago). You just need to learn to live with it." Even when if feels like I am slowly dying! :huh:

"You just have IBS, you need more fiber. Wheat Bran is good." (Yeah right.)

"You can't possibly have Celiac Sprue because you are overweight." (Not true.)

"I am going to test you for everything else before testing you for celiac disease because you can't possibly have that." <_< He never did get around to testing me for it. I left after a year, before he could "finish" all his testing.

"I will ONLY do a biopsy if you are anemic." (That's dumb. Anyhow I was always borderline anemic until I went gluten-free. Six months into the gluten-free diet and I was able to donate blood for the first time ever!)

"A lot of my IBS patients put themselves on a gluten free diet and feel better. I don't know why." DUH :blink:

"There are a lot of false POSITIVES with the Celiac blood tests, but I have never heard of a false NEGATIVE!" (I'm sorry, but the reverse is true...)

When I showed one doctor the gene test results and said that I have the gene, and feel better on the diet so regardless of the negative blood tests I feel I shouldn't eat gluten, she said, "I don't know that you have the gene." I SHOWED you the results, HELLO! "Well, I didn't order that test, so I can't believe it." I swear if you walked into her office with a pregnancy test and said it was positive she probably wouldn't believe it if she hadn't ordered it! Even if you came in later holding the baby! I so badly wanted to shove my results down her throat. Of course I didn't. I just left her office determined that she wouldn't make me cry AGAIN.

and my favorite...when I asked why the doctor didn't take ANY tissue samples during the Endoscopic exam (I mean shoot you are already in there would it be that hard to take a few samples!), the PA said to me:

"You can't test for Celiac with an Endoscopy, you have to do a Colonoscopy."

I told her that she had it backwards, that Celiac damages the small intestine NOT the colon, but she refused to believe me. She probably had no idea what Celiac was and was getting it confused with Crohn's. That was the last time I went to that doctors office. Not that my new GI doc was any better...


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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Oh Lord! After reading through all these posts THREE times....I don't feel so bad about having cut our pedis and GIs off in my daughter's case! Is this REALLY the best that our med schools have to offer???

Here are a few of my favorites while trying to figure out my daughter's failure to thrive issues:

From the THREE separate pedis and a pediatric GI no less:

When asked if it's "normal" for a nine-month old child to have diarrhea-like stools 7-10 times per day: "Yes. For some children that is normal" :huh: So I ask..."even if they don't eat much that day?". The reply, "Yes. That is completely normal." (Looking back now, I suspect that there are a lot of undiagnosed Celiac children in our area)

When asking the pedi if this could be a food allergy or intolerance as I noticed my dd acted up like crazy after having cereal and specifically oatmeal...."There is absolutely NO connection between behavioral issues and food"

When the severe diarrhea began to hit, our pedi told us, "Give her PediaSure twice a day, every day". Shaye would have severe stomach cramps, diarrhea within 4 minutes and then would cry for an hour and a half after each time I gave her PediaSure. After two days, I told the pedi that it just wasn't working. Her response...."I don't care, just make sure she drinks the PediaSure". In two short days, Shaye completely refused to eat or drink anything except for water and fruit. It took me TWO freaking weeks to get her back to eating "normally" again and of course, we went down on the weight charts....AGAIN!

When dd finally fell off of the weight chart completely and I told the pedi that she was refusing certain foods, namely breads, pastas and milk...."I don't care what you have to do! Your child needs more carbs, fats and proteins! Feed her as much bread, pasta and butter as you can! ....Are you still giving her PediaSure?" (Meanwhile, the 2000 July issue of the Journal of Pediatrics states that Celiacs is occuring in 1 out of 57 to 1 in 33 children...so much for continuing education)

Dh also really liked seeing a comment in my dd's chart that read..."Parents APPEAR to be attentive". We of course were told that if we didn't get her to gain weight on their high carb diet (with MANDATORY weigh-ins every two weeks), that they would "have to call social services in to make sure we actually had food in the house, that we earned enough money to support a child and that we were actually feeding our child". Talk about some pressure at every meal!! Here I was following their advice to the letter and was distraught all day long while making 2-3 entrees for every meal to make sure that dd had plenty of selection and wasn't just refusing to eat because she was craving something other than what I had originally planned. Oh, and after that appointment, they did give us 3 free cans of PediaSure!

Desperate, I consulted with an acupuncturist who had been an MD in China for over 20 years and was now teaching in the U.S. and working in pediatric nutrition. After speaking over the phone with me for 20 minutes, she said..."I am 95% sure that your dd has Celiac Disease or in the very least, a wheat allergy and a dairy allergy as her weight loss began within 2 weeks of starting cereals". Hmmm.....this woman NEVER physically saw my child and yet her advice truly jived with Shaye's growth information, eating habits and worked with the obvious FACTS of what we had been observing! Talk about a hand slapping forehead moment! Finally....someone who made sense!

But then we went to the GI. When I mentioned what the acupuncturist said and how Shaye responded incredibly well to a wheat-free diet, her comment was, "Yeah, well the Chinese have their own problems with rice allergies!" :blink: WTF does that have to do with anything??? Then she said, "Make sure to give her plenty of PediaSure" Apparently, PediaSure is the best band-aid of the pediatric world! The GI sent us home with a free 6-pack of the stuff!

The only good thing that came out of our appointments was a positive diagnosis of a dairy allergy.....at which point I officially could tell them all to SHOVE their PediaSure!!!


Vicky

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The first doctor that my husand saw ever for his gastro problems in 1977 gave him Colace for his diarrhea. Need I say more?


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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Guest nini

I have to LOL at the pedia sure Dr. Chey's Ped. GI kept giving us free samples of Pedia Sure and saying that I needed to FORCE her to drink them even if she didn't like them... My daughter got to the point she was calling the ped. GI the "milkshake Dr." LOL! (this is the same Dr. that REFUSED to consider a dx of celiac even though I had it because "it's JUST IBS") yeah right!

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Same doctors who gave my husband colace (he had undiagnosed/misdiagnosed celiac disease the whole time from 1977 to now) also berated him when he asked for a lower GI series (after them doing just an upper GI and finding nothing wrong). The doctor said to him "You junkies are all the same. You only come here (making up symptoms and get tests) to get drugs from us!" My husband replied "Why kind of a nut do you think I am that I am asking for a barium enema?" This was the Veterans Administration Hospita in East Orange, NJ in 1977. They never did the test he requested and he HAD to move on to a private doctor who was no better we later found out.


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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Guest nini

I had one Dr. pull that "junkie" line on me, and I looked at him very sternly and said, LOOK IDIOT, I'm ALLERGIC to anything with CODEINE, MORPHINE, DEMORAL, Any of these so called narcotics you think I'm trying to get from you... Didn't you even LOOK at my chart????? (apparently not)... he then was very dismissive of me and told me I just had an upper respiratory infection and prescribed antibiotics (again, I'm allergic to the ones he prescribed :rolleyes: ) So I left and didn't go back to his office. I was so tired of being told I had "upper respiratory infections" every other month!

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I hear ya on the upper resperatory infections--for literally years, doctors told me that the cause of my symptoms were sinus infections. This, despite the lack of any nasal symptoms. I took so many antibiotics that I'm allergic to all but one strain now. I also took many rounds of steriods--both oral and by injection. This went on for years. Two years ago, I had a cat-scan of my sinuses done--and they were perfectly normal. Now I know that the steriods seemed to help because they MASKED the symptoms of my then undiagnosed Celiac. :angry:


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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Guest nini

funny how as soon as I went gluten-free, those damned Upper respiratory infections disappeared!

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Yea--mine too! Imagine that ;)


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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Wow some of these are crazy!!!

Mine pales in comparison to some of these.

I had correctly self diagnosed myself for H Pylori. Went to the GI for an endoscopy to 100% confirm the bloodtests where correct before starting the meds. Ofcourse I told the doctor that in addition to this new development that in all honesty I'd been nauseaus for about the last 8 years of my life. Ok fine. Dr. does the endoscopy, I was correct have H Pylori in addition to forming an ulcer from to much Excedrin, Advil and the H Pylori, but here's the kicker. He also proceeded to tell me that my small intestine looked a little funny but we'll look into that later.

Now I'd never heard of celiac before, but for the love of G-d, you are a GI!!! I just came in and told you that I have felt sick for 8 years, you just did an endoscopy where you noticed my small intestine looks funny, yet didn't bother to take a biopsy... and had no clue I had celiac. Thanks!

Fast forward to a 1 1/2 later, my 1st cousin is diagnosed with celiac and the mystery of why I've been sick for nearly 10 years is solved.

Had this been a general doctor, well I'd stil be a bit concerned that this guy didn't know... but this is his specialty for G-d's sake!!!!


Jillian

Positive Blood test and Biopsy

Inflamed stomach lining

Gluten free since July 6, 2005

Tarrytown, NY

"Sometimes being a b$tch is all a woman has to hold onto." - Dolores Claiborne

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Jillian--You'd think that just a little common sense would be in order! Unbelieveable <_<


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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