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Could It Be Something Else . . . ?


KLTerry

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KLTerry Apprentice

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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KaitiUSA Enthusiast

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.

KLTerry Apprentice

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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    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
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