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How Many Of Your Gi Doctors Were Willing?

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#1 Guest_Disturbed_*

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Posted 08 March 2004 - 10:46 AM

How many of your GI docs were willing to accept the fact that you had Celiac`s??

Mine took months worth...three months worth
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#2 Guest_gillian502_*

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Posted 08 March 2004 - 11:29 AM

I had been ill with vertigo, dizziness, and an abnormal heart rate for over a year, then when I began to display gastro symptoms such as diarrhea and weight loss, I went to the Mayo Cliinic in Minnesota and the first test the dr. ran was for Celiac Disease. The blood tests were postive, so when I returned to my home dr., he suggested a biopsy right away, and the diagnosis was confirmed. My dr. at Mayo who orginially told me about celiac disease was of Indian desent, and I believe this is part of the reason celiac disease occured to him....most American doctors are simply not trained in looking for Celiac Disease. I've seen European doctors from time to time and they always seem more well versed in celiac disease due to the popularity of the disease in Europe (it is generally a routine part of a person's blood testing over there even before the age of 5.) Many people on this site have a very hard time even getting their dr. to blood test them, which is crazy. I suspect more than half of all "IBS" patients are actually celiac disease sufferers.
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Posted 08 March 2004 - 12:24 PM

You are so exactly right!!! I was diagnosed with "IBS" for the last 8 years or so.... I suffered with more than horrible pains for all this time and no one would do anything to help.

My family doctor is still a schmuch...... but since I am on state assistance I cant choose my doctor. Its a whole messed up situation.

Anyway, My doctor says I do not have Celiac because she tested me for it with blood work eventhough I told he odds of it coming out positive were slim since I was alreay on a gluten-free diet. She insisted that it would come out with accurate results either way and that shes right and that I had been mis-informed.

I pretty much diagnosed myself with the help of a dietition since starting a gluten-free diet was the only thing that helped. My dietition has helped with the start of my recovery but I can only get so much help with the medical field till I can prove to them the way I feel is got to be Celiac sonce nothing else helps.

Still my doctor wont do anythign about it. my next appointment is the 25th of this month and she wont bump it up as an emergency one.. which means if I dont get a note saying whats wrong with me the caseworkers and my boss are going to go against me and take away my state money. and then how am I going to pay my bills....

Ive been losing jobs, no one understands... I need doctors notes for work and the DSHS people... What am I supposed to say so that they'll understand??????? Its like no one believes me!!! AHHHHHHHHHHH :(

Anyone having this problem???????? I wanna work but i am too sick all the time to. And no one believes me!
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Living gluten-free, Egg, Dairy, Nut, Soy, and Corn Free since Winter/Spring 2003

Fathers be good to your daughters,
Daughters will love like you do,
Girls become lovers who turn in Mothers,
So mothers be good to your daughters too.



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Posted 08 March 2004 - 03:44 PM

Get a new Dr- if your current one is so horrible, why are you sticking around? I too had to beg my Dr for the bloodwork. I took the test on June 10 2003 and called the office for 2 weeks straight to find out the results. They did not call me back until July 3rd. When I asked them to fax me a copy of my bloodwork, it indicated that they recevied the results back on June 13. They waited 3 weeks just to call and give me my results. So, I changed Dr's and I am so much happier now.
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#5 Guest_gillian502_*

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Posted 08 March 2004 - 04:20 PM

I also am unable to work due to this disease affecting me so badly. I don't know if I have a shot at collecting disability, but I'm about to try. You should do all you can to change doctors...my doctor has said some pretty stupid things about Celiac Disease, but even he knows you MUST be eating gluten for a long while leading up to your blood work and biopsy, or the tests will be negative. The fact that your doc doesn't know that much makes her seriously misinformed. If you switch docs, then you could gluten-load for a while and get positive blood results, which will help you have a legit diagnosis and therefore help with your work situation. Hang in there!
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Posted 08 March 2004 - 04:33 PM

I've had symptoms since I was younger than 4. I've been diagnosed with IBS for 17 years. In the past 32 years no one ever mentioned celiac disease in all of the hundreds of times I've been to the doctors and all the dozens of doctors I have seen. I brought it up to my doctors over two years ago and have come up empty. None of the earlier doctors would test me for it and when I finally got tested last year (after being gluten-free off and on a few times) I was negative on both the blood and biopsy. But Enterolab gene & stool tests say I am positive. My current doctors refuse to believe me. Well I don't plan on going back to the GI, and I plan on just telling my regular doctors that I do have celiac disease. They can think I'm crazy if they want to, but they didn't have to spend 32 years in my body, with all the aches and pains. I would love to have my doctors believe me, but I will apparently have to wait until they catch up with technology, and recognise that the tests I had done at Enterolab are valid tests.

Mariann :)
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Mariann, gluten intolerant and mother of 3 gluten intolerant children

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Posted 08 March 2004 - 04:44 PM

I too suffered with GI symptoms for years and was told I had IBS. I took the Enterolab route and was diagnosed last Sept. I faxed my results to my GI doctor because I was having other problems. At first he defended all he did for me and was not keen on the results I had received but then I told him I had improved on the gluten-free diet and he changed his mind and accepted the diagnosis.

It would not have bothered me if he didn't accept it because I was there to see him for other problems and would NEVER go back on gluten to satisfy him or any other doctor.
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Posted 08 March 2004 - 07:56 PM

Is it my dumb luck, or living in California - land of the fruits and nuts? My GP did the blood work for me (a good panel), and when only one test (and not the tTg) came back slightly positive, she suggested I do a dietary challenge, and has accepted my verbal report of my results to her. My gyn specialist accepted it at face value as well, but he's gotten used to seeing a lot of his vulvar vestibulitis patients having celiac or other food sensitivities. My allergist... he doesn't want to believe me, but since he doesn't live in my body, he doesn't have to - he just has to prescribe gluten-free meds, 'cause I won't take any other ones. ;-)
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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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Posted 09 March 2004 - 05:58 AM

We have been at it since last august.. when we first took my son to the doc for chronic diharea. Our regular doc suggested a gluten-free diet and a trip to the GI. Well we did the diet and he got better wish we hadn't we might have gotten more results with the GI then. On Monday his next appr I plan to ask for a blood panel since the doc already saw fit to do an endoscopy (neg) I think I have the right to ask for a simple blood test. ;)
Especially since the 10th of Feb my little guy has had exactly 5 formed bms.. the rest.. ick.. so we are back where we started.. mabye now he will listen. <_<
But I knew before I went to this guy he was a tough sell.. I wanted to deal with the children's hospital so I pretty much have little choice in the doc..
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Posted 18 March 2004 - 04:50 PM

My doctor was the one to say celiac. She thought of it only the second time she saw me come in sick. The first time I was sick it looked like just really bad food poisoning, but the second time she said you just don't get this sick twice without an underlying condition. My immunoglobulins were low, so she checked my IgA, and when that was low she said celiac is genetically linked to that, so she checked that. I know I'm lucky, lucky, lucky.
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Posted 18 March 2004 - 06:29 PM

It took 3 visits to my PCP to get blood work and he told me I had celiac disease.
I was so sick I thought I had a stomach virus. I had lost 10 lbs by my third visit so I think he caught on. But talking to my GI he told me if I hadn't been so sick it probably wouldn't have been picked up on.

My problem now is my GI (whom I like and respect) keeps hinting around that I have Crohns. Can't they do a test for that? I already had a colonoscopy and he found some inflammation not related to celiac disease or he thinks not related to celiac disease.
It does seem every time I see a doctor I walk away with more questions than answers.
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#12 Guest_shar4_*

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Posted 19 March 2004 - 11:22 AM

From what I have read on this site, I was very, very lucky to get to a gastro that did biopsy right away, and actually knew what she was looking at.

I remain forever grateful to her.

Blessings to all.
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Posted 20 March 2004 - 11:17 AM

We ran the gamut with doctors for my daughter...but she didn't fit the "profile" so celiac disease was not considered. we talked about crohn's and ulcers and all the rest but then her doc just pulled it out of the hat and we love him forever. I've had these symptoms since i was little(i'm 39 now and was diagnosed with an ulcer at 8)and everything but celiac disease was considered. My mom was on Medicare and sick for years and years, but alot of Medicare patients are like state assisted patients, they don't get the care they need. My mother's doctor(not speaking in generalities here) saw my mom as "old-lady-on-medicare-don't-waste-energy", and so she died.

And call it what you will, i do blame this doctor. My mother had to beg for a colonoscopy even though the danged tumour was big enough that you could feel it from the outside. Her oncologist wrote up the doctor since it was his firm belief that if it had been caught even 6 months prior we could have had a fighting chance. Instead, she died 6 weeks later.
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Posted 23 March 2004 - 01:15 PM

I'm new to this forum, so please excuse and correct any wrong behavior.

I had become convince I had celiac disease by reading "Dangerous Grains", so I got the name of a GI doctor in San Francisco from the list on this website. He was great and did the endoscopy and biopsy, which was positive. However, he said that he spends a lot of his time training other doctors and labs in how to read the biopsy reports, because they commonly misdiagnose if they haven't been really trained to spot celiac disease. As a matter of fact, I got a copy of the biopsy report (I always try to get copies of all my tests), and it said that based on the percentages, it was negative for celiac disease. But my GI had written on there that my score was actually high enough to indicate celiac disease. Now, how many other doctors, who don't specialize in celiac disease, would have just read the report and sent the patient to a psychiatrist (which happened to me)?

I got the wrong diagnosis from about 20 different doctors for 51 years, but then, most of this info is brand-new, and I didn't have the classic symptoms. When I was a kid, in 1966, I worked as an aide in nursing homes. I remember a poor old woman who I now believe must have had celiac disease. Every time she ate, it went right through her, immediately. It was just awful. Besides the pain and being sick all the time, she was just humiliated and so apologetic every time. If I have to have a disease, this is the one to have. All I have to do is watch what I eat and I can have a normal life. I'm really amazed because I have been sick for so long. I'm so glad to have found this message board, I was feeling pretty isolated before this. Thanks!

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Posted 25 March 2004 - 09:11 PM

It has taken the Doctors 14 years to diagnois me. I have been told I have Lupus, MS, too much stress(I hate that word), I am crazy, and need to see a head Dr. With each diagnois, my depression was growing. Finally, I said LOOK, I am not stressed. Made them take a stress test (no stress), and I am not crazy, I am really sick, and my systems are REAL.
Now the story has changed. Boy, we are sorry. You have probably had CF all your life as it is inherited. I have rhumitoid arthritis and a tumor on the thyroid they are watching, not to mention something swollen under my right chin the size of a ping pong ball(it has been this way for 3 years.) Three different doctors have looked at the same CAT scan, and each one says it is something different. One said it is a cluster of Lymph nodes, one said it is a bone, and one said it is saliva glands which have melfultioned because of the arthritis.
Anyone know a good Celiac Doctor in Cedar Rapids, Iowa?
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