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hisaysty

Diagnosis Confliction

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For the past 10 years or so, I've suffered with frequent stomach pain. It got significantly worse last summer, and so I started looking for information and stumbled across Celiac Disease. It seemed like the symptoms matched what I was experiencing, and so I immediately went gluten-free and scheduled a blood test.

 

I was probably gluten free for about 2-3 weeks at the time of my blood test, which was an Endomysial test. The test results came back negative, but I have since told everybody that I have Celiac Disease.

 

It just made sense. I assumed the test results must have been wrong, and so I lied to everybody. For the most part, I convinced myself that I had Celiac Disease, and I really did think I had it, and I sort of still do. My symptoms vanished very quickly after going gluten-free. But not only was I gluten-free, I was pretty strict paleo, and I wasn't eating any processed garbage whatsoever.

 

The thing is, I've eaten several meals at restaurants over the past few months that I thought were gluten-free, when in fact, they were not.

 

I've also come into close contact with gluten and not reacted. To give a few examples; one time I was eating a salad from a restaurant, and I came across a noodle. I dug the noodle out, and because I was so hungry, I ate the salad anyway. I felt fine afterward. Another time, I was eating pad thai, which was supposed to only contain rice noodles, but I found 5-10 non-rice noodles in the pad thai, and I ate it anyway. I didn't get sick. Also, I once took a bite of a pancake my friend had made (she thought she'd made it gluten-free). but it had oatmeal in it. I felt fine.

 

But on the other hand, there were two instances when I was eating meals (that I cooked myself) and I reacted horribly. The catch? Those meals were both meals that I had cooked before, and the only way they could have contained gluten was some sort of cross-contamination. But when I did get sick, it was very intense, and followed all the signs of a classic glutening. I suppose it could have been food poisoning or something else entirely, but I just don't know.

 

I'm starting to go crazy. I realize that due to past stomach discomfort prior to going gluten-free, I probably have a sensitivity to gluten at the least, but I don't want to live in fear of it if I don't have to. I want to be able to order a meal and not worry if it has soy sauce in it. I want to order a salad and not have to send it back if it's served with a breadstick on the side.

 

If I do have Celiac Disease, then I don't mind living with these inconveniences, but if I don't have Celiac Disease, I don't want to live in fear. I don't know what I should do. My test results came back negative. I could eat some gluten and see if I react, but is it worth doing if it ends up hurting me? I've been gluten-free so long that any test would come back negative. But I'm starting to think that maybe all of this was in my head and I don't have celiac disease at all.

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It can be really confusing when symptoms, reactions and blood tests don't match up! I'm sure there will be others here with more knowledge about possible other intolerances and the best testing to have, but it strikes me that if you aren't 100% sure either way there's a danger that you could have celiac disease but *cheat* occasionally because you aren't 100% sure, which would be a disaster if you did have it. So, it might be worth having more testing... which I agree with you, I would hate! (I have only had a positive blood test myself and am putting off having the biopsy until I'm just living in one country again - long story). But if the uncertainty leads to the odd bit of gluten and you do have it, that's not good for you either. Good luck!

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If you get the blood test you need to be eating Gluten for the test results to be positive if you have Celiac. I tell the waiters and waitresses I have Celiac I have to make sure there is no wheat Rye or Barley on my plate. One time my steak did have a piece of bread across it, I did send it back. Because I had the conversation with her. And I made sure I checked to make sure it was not the same one. Yea you have to talk to the chef if thats what it takes. When it comes to cooking for your self, all I can say is read the labels. If it doesn't say Gluten free it probably isn't. So you may be CC your self. I hope you find the answer to your problems , Good luck sweetie. 

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How long have you been gluten-free?

If you aren't getting nasty symptoms when you eat gluten, it may be worth doing a gluten challenge so that you can get re-tested.  If you've been getting cross-contaminated regularly then you aren't 100% gluten-free (although probably too gluten-free for the tests to be useful) and if you aren't 100% gluten-free that may explain why you don't react to getting glutened.  Your body hasn't had a chance to get rid of it all because you keep eating it.  (just a guess)

 

Typically, for a gluten challenge they recommend eating the equivalent to 2 pieces of bread each day for 2 to 3 months prior to getting the blood test.  If you choose to do this, continue to eat gluten until the test results come back because if they do come back positive for Celiac they will most likely want to confirm with an endoscopy and biopsy and you need to continue to eat gluten until that test is done as well.

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I've been very strictly gluten-free for about 6 months. In that time, I've had 2 reactions that I suspect may be due to cross-contamination with gluten. However, I have no reason to believe this. Both of these instances occurred with meals that I had cooked in my own kitchen with ingredients I had used before. This leads me to think maybe it was not due to gluten but something else entirely. Furthermore, I've eaten things that touched gluten since going gluten free, and I did not react.

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Logic says you can't have it both ways.  If you didn't get glutened by wheat noodles being in with your gluten free food, odds are you're not sensitive enough to get glutened by CC in your own home while you are in control of your food. 

 

There are a lot of possibilities here, non-Celiac gluten intolerance, silent celiac, other food intolerances, combinations of the latter, and probably more I can't think of at the moment.  I would recommend a gluten challenge.  See what happens if you reintroduce it, but DO get tested even if you don't feel badly after the challenge.  If you get sick right away, you can always stop knowing for a fact that gluten is a no-no.  In the meantime, I would recommend donuts over pieces of bread per day :)  

 

Shellie

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