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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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    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
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      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
    • trents
      Welcome to the celiac.com community, @JamieAnn!  Glad you had a good experience at your local Jersey Mike's.  In the town I live in all we have is Subway and they stopped offering gluten free buns. So, I can't eat there anymore. Oh, more recently there has come to our town a Firehouse sub shop and, according to the Internet, they offer gluten free buns but I haven't tried them yet. For super sensitive celiacs, cross-contamination in handling at these sub shops may also be a problem.
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