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Could It Be Something Else . . . ?


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#1 KLTerry

 
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Posted 14 March 2005 - 01:28 PM

I started having noticible stomach problems back in January of 2004. I'm not sure if they just occurred out of nowhere. I had been pregnant for two years (my kids are 2 1/2 and 17 months), so there were obviously changes in my body that I just blamed on pregnancy. Anyway, back in January '04, I talked to my PCP about stomach cramping. I couldn't really pinpoint it to any specific location, but it felt like all over. He told me to drink more water because I was constiputed. I told him that I had been constipated since 2002 and that no amount of water or any of the meds he prescribed me were doing anything. I then went to see a specialist who did bloodwork and scopes and ultrasound and scans, and most every test is normal (which I'm not complaining about). The celiac disease bloodwork was negative/normal/inconclusive, so I had a genetics test done, which came back inconclusive as well, so all tests were sent to a specialist, who said that he thinks I have celiac disease (I know I've told this story before). And this brings us back to my doctor's appointment at my new GI, where ALL of my tests came back normal. Now, I have been struggling with being gluten-free, and I've got to be honest, I'm not having much success, so I don't think that "trying" to be gluten-free would have produced normal blood results. So, my question is, if I don't have celiac disease, what the heck do I have? Are there any other diseases that are mistaken for celiac disease?
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Diagnosed 6/04
Diagnosis retracted 7/04
Diagnosed again 8/04
Trying to be gluten free since 1/05. It's hard!

Pittsburgh, PA

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#2 KaitiUSA

 
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Posted 14 March 2005 - 02:10 PM

Which tests for celiac were inconclusive before? What exactly did they test you for with celiac? Were you on a gluten-free diet when the new tests came back normal from the other doctor? If you were attempting a gluten free diet leading up to that then it is possible it can screw up the test results. Is this new GI knowledgeable about celiac? The other one you had that thinks it was had to have a reason for thinking that and if he deals with celiac alot I wouldn't cross celiac off just like that especially since you had inconclusive results. Blood tests can be negative but you still could have celiac. That's why I asked which tests you were tested for becasue some are more accurate then others and only some labs do certain tests. The symptoms I have heard you talk about are ones that come with celiac. Have you been tested for other intolerances or allergies to other foods. Maybe you have a gluten intolerance if you don't have celiac. I would look into those things as well. Have you done an Enterolab? That might give you some insight as well. Good luck :D

-And celiac can be triggered by pregnancy,childbirth,stress, etc

Also you may want to check out about Candida.Other then being a celiac for a while I found out not to long ago I have candida and I am on Nystatin. Candida can cause some similar symptoms.

As far as it being hard to be gluten free....when I was told if I don't follow the diet I would probably end up with cancer at a young age that made me determined to follow the diet. I'm not about to compromise my life for a piece of pizza. It tears your intestines up and puts you at risk for so many serious and life threatening complications.
Just like if you had a serious allergy to peanuts you would stay away from them because you could die right. Well isn't a celiac and eating gluten the same concept? No, with celiac it won't kill you right away but the concept is the same and it still is serious.
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#3 KLTerry

 
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Posted 15 March 2005 - 02:13 PM

Most of my tests were negative, and I was only attempting a gluten-free diet when the blood tests all came back negative. In the summer, Two of three came back negative and one was inconclusive (not sure which one). An endoscopy revealed a hyatal hernia, colonoscopy revealed nothing but fissures and hemrhoids. The scan they did (not sure the name of scan, but was a big machine that came down over my stomach and i had to stay still for an hour) came back as normal, the ultrasound came back as normal, all of my regular bloodwork (i.e. glucose, thyroid, etc.) was normal. The only thing that was off was my vitamin D and my iron, but only slightly.
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Diagnosed 6/04
Diagnosis retracted 7/04
Diagnosed again 8/04
Trying to be gluten free since 1/05. It's hard!

Pittsburgh, PA




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