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herbert eichenholz
Joined: 04 May 2005
Posts: 5
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 Posted: Fri May 06, 2005 3:07 pm Post subject: 2 tests to results for celiac |
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HI, BIT OF A PROBLEM, 3 YEARS AGO, HAD LOSS WEIGHT, AND LOT OF DISCOMFORT, WENT FOR AN ENDOSIPY, AND THE SAID IT WAS CELIAC, 3 YEARS GLUTEN FREE, BUT SAME PROBLEMS.
WENT TO ANOTHER DOCTOR, HE TOOK A BLOOD TEST, SAID IT SHOWED NO CELIAC, BUT SAID, MOST LIKLY, I.B.S, OFF GLUTEN FREE, BUT VERY NERVOUS.
ANY INPUT, WOULD HELP
HERB |
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Lacey
Joined: 06 May 2005
Posts: 14
Location: Northern NJ
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| Posted: Fri May 06, 2005 6:03 pm Post subject: |
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Herbert,
I would suggest going to as many dr's as you need to for a 2nd and 3rd medical opinion before going off the GF diet completely. The 1st gastroenterologist that I went to see didn't think I had any issues and my PCP initially thought it was Acid Reflux. I then went for a 2nd medical opinion and that's when they found out that I had Celiac. I wish you the best of luck and please keep me updated.
LACEY |
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Guest
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| Posted: Fri May 06, 2005 6:37 pm Post subject: Re: 2 tests to results for celiac |
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| herbert eichenholz wrote: | HI, BIT OF A PROBLEM, 3 YEARS AGO, HAD LOSS WEIGHT, AND LOT OF DISCOMFORT, WENT FOR AN ENDOSIPY, AND THE SAID IT WAS CELIAC, 3 YEARS GLUTEN FREE, BUT SAME PROBLEMS.
WENT TO ANOTHER DOCTOR, HE TOOK A BLOOD TEST, SAID IT SHOWED NO CELIAC, BUT SAID, MOST LIKLY, I.B.S, OFF GLUTEN FREE, BUT VERY NERVOUS.
ANY INPUT, WOULD HELP
HERB |
Hi Herb,
Welcome to the board!
There might be a good reason your blood test came back negative...you've been doing a great job at being GF!!  Do you know what tests were done?
You similar gastro problems may be caused by other foods. Many times celiacs are also casein sensitive or lactose intolerant. Have you experiement by cutting out dairy products? Soy & corn are other biggies.
It's unusual to see a diagnosis of CD that has been "retracted". Usually it's harder than he!! to get the diagnosis in the 1st place.
If you were diagnosed by biopsy - I'm not so sure I'd be going off the diet.
Lacey's right - maybe another opinion.
So how long have you been "off the wagon"? How do you feel? |
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aklap
Joined: 02 Oct 2004
Posts: 8135
Location: WI, USA
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| Posted: Fri May 06, 2005 6:38 pm Post subject: |
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RATS!! That was me
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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herbert eichenholz
Joined: 04 May 2005
Posts: 5
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| Posted: Fri May 06, 2005 8:03 pm Post subject: |
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THANKS, LACY, THE 1ST TEST WAS 3 YEARS AGO, AS NOTED I WENT BECAUSE, I HAD LOST A LOT OF WEIGHT, 30LBS, AND WAS HAVING BAD STOMACH PAIN, THE BIOPSY, WAS SUGESTED, AFTER I TOLD THE DOCTOR, I THOUGHT I HAD CELIC, AS A CHILD. HE SAID, THE TEST CAME BACK POSITIVE, AND WENT ON A GLUTEN FREE DIET, WEIGHT LOSS STOPED, BUT PAINS WENT ON.
THE BLOOD TEST WAS DONE 2 MONTHS AGO, BY ANOTHER DOCTOR, WHO SAID, BLOOD TESTS ARE MORE ACCURATE, AND RESULTS CAME BACK NEGITIVE, WENT OF G/F DOET 3 WEEKS AGO, ITS VERY HARD TO TELL IF I FEEL BETTER, PAINS STILL PERSISTS, MAY BE A SILLY QUESTION, BUT WHAT SIGNS AM I TO LOOK FOR, THE DOCTOR, WHO DID THE BLOOD TEST, SAID COME BACK IN 6 MONTHS FOR ANOTHER BLOOD TEST TO BE 100 PERSENT SURE.HE SAID IF I WENT THROUGHT A WHOLE ADULT LIFE, IM 64 NOW, WITH CELIC, AND IT JUST GOT TO ME 3 YEARS AGO, DID NOT MAKE SENCE |
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Guest
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| Posted: Fri May 06, 2005 9:19 pm Post subject: |
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| If the pain still persists, it could be that your system is going through the shock of you eating gluten again. Go see another Gastroenterologist and let him know your full medical history and have them do additional blood work since you started eating gluten again, the blood tests may pick it up again. If you're not feeling well, go back on the gluten-free diet to see how you feel. Please keep in touch and let me know how you are doing. |
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Lacey
Joined: 06 May 2005
Posts: 14
Location: Northern NJ
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| Posted: Fri May 06, 2005 9:21 pm Post subject: |
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Herbert,
The previous e-mail was from me.
Lacey |
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aklap
Joined: 02 Oct 2004
Posts: 8135
Location: WI, USA
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| Posted: Fri May 06, 2005 9:42 pm Post subject: |
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| herbert eichenholz wrote: | THANKS, LACY, THE 1ST TEST WAS 3 YEARS AGO, AS NOTED I WENT BECAUSE, I HAD LOST A LOT OF WEIGHT, 30LBS, AND WAS HAVING BAD STOMACH PAIN, THE BIOPSY, WAS SUGESTED, AFTER I TOLD THE DOCTOR, I THOUGHT I HAD CELIC, AS A CHILD. HE SAID, THE TEST CAME BACK POSITIVE, AND WENT ON A GLUTEN FREE DIET, WEIGHT LOSS STOPED, BUT PAINS WENT ON.
THE BLOOD TEST WAS DONE 2 MONTHS AGO, BY ANOTHER DOCTOR, WHO SAID, BLOOD TESTS ARE MORE ACCURATE, AND RESULTS CAME BACK NEGITIVE, WENT OF G/F DOET 3 WEEKS AGO, ITS VERY HARD TO TELL IF I FEEL BETTER, PAINS STILL PERSISTS, MAY BE A SILLY QUESTION, BUT WHAT SIGNS AM I TO LOOK FOR, THE DOCTOR, WHO DID THE BLOOD TEST, SAID COME BACK IN 6 MONTHS FOR ANOTHER BLOOD TEST TO BE 100 PERSENT SURE.HE SAID IF I WENT THROUGHT A WHOLE ADULT LIFE, IM 64 NOW, WITH CELIC, AND IT JUST GOT TO ME 3 YEARS AGO, DID NOT MAKE SENCE |
Herbert,
Many times they use the blood tests for screening. If they find cause like a positive blood test (or if you really beg them like I had to), they will do a biopsy. If the biospy shows damaged villi they will diagnose you with CD. There are Docs that will diagnose solely on blood tests, there are Docs that diagnose on improvement on a GF diet. You have a very interesting case.
I'm not sure that saying blood tests are more accurate than biopsies is correct. Blood tests are not always 100% correct. Villi damage is visible under microscopes.
Lacy's right - it might be the gluten that you are now consuming. Are you in pain all the time? Have you considered keeping a food journal? Sometimes you can determine foods that maybe causing problems. An elimination diet would be another tool.
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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