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Feeling Frustrsted


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7 replies to this topic

#1 iszler

 
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Posted 17 September 2005 - 05:34 AM

I went to the doctor yesterday, and the doctor laughted when I said that I thought I might have celiac diease. He said he rarely see celiac and when he does the people are rail thin with bloated stomachs( I'm 5'6 140lbs.) He said he thought my symptoms were just stress from my job(teacher) He did go ahead and do the blood tests, but he also said that it was just IBS and he gave me a prescription for Dicyclomine. My results come back on Friday. If they are negative what should I do? Should just keep eating normal and take these pills or should I get a second opinion?
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#2 skoki_mom

 
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Posted 17 September 2005 - 06:06 AM

Ugh, I hate it that he laughed at you! How disrespectful!

FWIW, I'm 5'6", 150 lb, no bloated stomach, no diarrhea, no weight loss (I wish!), no cramps, no gas, zero nada zip!!! And I do have celiac disease! Not everyone is the same, your dr should know that. My family dr was actually really great, I asked to be screened cuz my sis has celiac disease, and she said no problem but I don't think you have it. Neither did I, but I was positive on labs and the biopsy confirmed it. I've been gluten-free for 3 weeks now.

What you do now is really up to you. If it comes back +, do you want a scope? If you do, may as well keep eating normally because you need to be eating gluten for the tests to come back accurately (do what I did, visit all your favourite spots and never walk past a bakery without going in, lol). If you don't think you will have a scope either way, just go onto the gluten-free diet and see if your body responds positively.

Wish I could tell you more! ((hugs))
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LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

#3 Carriefaith

 
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Posted 17 September 2005 - 06:21 AM

If they are negative what should I do? Should just keep eating normal and take these pills or should I get a second opinion?



If the results are negative... you could have a gluten sensitivity or intolerance, or you could have an intolerance to something else like casein (milk protein), lactose, soy, corn, ect. You could start out by eliminating dairy products and see what happens. If that doesn't work, than I would try gluten.

Persoanlly, I believe that IBS only occurs when the digestive track is agitated by something that the body cannot tolerate. I've been on two IBS meds. One was really bad and didn't work, actually it made me feel worse. And the other one worked for awhile and then stopped working. The last time my GI doc issued me IBS meds, I didn't get them.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#4 scottsuzann

 
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Posted 17 September 2005 - 07:10 AM

I went to the doctor yesterday, and the doctor laughted when I said that I thought I might have celiac diease.  He said he rarely see celiac and when he does the people are rail thin with bloated stomachs( I'm 5'6 140lbs.)  He said he thought my symptoms were just stress from my job(teacher)  He did go ahead and do the blood tests, but he also said that it was just IBS and he gave me a prescription for Dicyclomine.  My results come back on Friday. If they are negative what should I do?  Should just keep eating normal and take these pills or should I get a second opinion?

<{POST_SNAPBACK}>


Some doctors just do not have a clue! My doc, refered me to see a surgeon who told me that my Iorn levels were low because of my period,( my faratin level was 1.4) and refered me to see a OB doc who sent me back to the surgeon who placated me but after a year of prodding agreed to do the scope and of my gosh if it did not come back positive. Did i mention that he was soooo sure he would find nothing! Do not give up! If you have to find another Doctor, one that will listen and one that will do all the blood work needed and check it, sad to say but not all doc are forth comming. Good luck! ;)

Suzann
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#5 ravenwoodglass

 
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Posted 18 September 2005 - 08:59 AM

I went to the doctor yesterday, and the doctor laughted when I said that I thought I might have celiac diease.  He said he rarely see celiac and when he does the people are rail thin with bloated stomachs( I'm 5'6 140lbs.)  He said he thought my symptoms were just stress from my job(teacher)  He did go ahead and do the blood tests, but he also said that it was just IBS and he gave me a prescription for Dicyclomine.  My results come back on Friday. If they are negative what should I do?  Should just keep eating normal and take these pills or should I get a second opinion?

<{POST_SNAPBACK}>


There is never anything wrong with a second opinion. Also many show up negative on blood work, I have never come back positive but both kids did. Good luck.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#6 nettiebeads

 
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Posted 18 September 2005 - 11:30 AM

I went to the doctor yesterday, and the doctor laughted when I said that I thought I might have celiac diease.  He said he rarely see celiac and when he does the people are rail thin with bloated stomachs( I'm 5'6 140lbs.)  He said he thought my symptoms were just stress from my job(teacher)  He did go ahead and do the blood tests, but he also said that it was just IBS and he gave me a prescription for Dicyclomine.  My results come back on Friday. If they are negative what should I do?  Should just keep eating normal and take these pills or should I get a second opinion?

<{POST_SNAPBACK}>

OH for Pete's sake!! Where is his professionalism?!? IBS is just a catch-all dx in my mind. It seems that there are more dx that correspond with pharmaceutical ads than anything else. If the results come back neg, it could be a false neg, but if the results are pos, then you have celiac disease. If they come back neg, you could always try the gluten-free diet on your own. If your symptoms lessen and you start to feel better, that most likely means you have celiac disease and the diet challenge is a legitimate diagnostic tool for celiac disease. (that's how my dr. found out I had celiac disease) Keep us posted.
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gluten-free since Oct 1996

#7 Rachel--24

 
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Posted 18 September 2005 - 03:15 PM

I went to the doctor yesterday, and the doctor laughted when I said that I thought I might have celiac diease.  He said he rarely see celiac and when he does the people are rail thin with bloated stomachs.

<{POST_SNAPBACK}>


Your doctor sounds just as bad as mine. You don't have to be rail thin w/ a bloated stomach to have celiac disease...you can be overweight or of normal weight and still have it. I DID fit that "classic" description however and no doctor I ever saw (and I saw lots) ever once mentioned celiac disease to me. They were just clueless. I didn't know I had a problem with gluten but I did know I had a problem with food in general. Whenever I told my doctor that food was making me sick and also causing depression and weight loss I was told to go see the psychiatrist. <_< I changed my diet on my own and my symptoms improved...when I pointed this out (still not aware of the gluten problem) I was told that I wasnt really better since there was nothing wrong to begin with...it was just the placebo effect of me "thinking" I was better. I was laughed at too but it doesnt matter cuz I'm getting better and I'll be the one laughing at them in the end. :D
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Rachel

#8 ianm

 
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Posted 18 September 2005 - 06:14 PM

I don't have any faith in doctors when it comes to celiac disease. I was not rail thin I was obese and there are others here who are or were overweight. All the doctors wanted to do for me was write lots of prescriptions. Find another doctor and if that doesn't work you can always try the gluten-free diet anyway and if that makes you feel better then that may be all you need to know.
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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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