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Julianna

Everything Is Negative, But I Don't Believe It

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Hi there!

I have had gastro issues all of my life. My father had epilepsy, a really bad form of it. I now believe they are both caused by gluten. The gastro issues I was experiencing became intolerable after the birth of my last baby, 2 years ago. I could keep nothing I ate, down, and I was in constant stomach distress, had a few pancreatitis attacks, and I thought I was going to DIE. I gave birth naturally, and thought the pain was not too bad, because once you have a few pancreatitis attacks, no pain seems as great as that. The doctors found nothing wrong with me, although they did say intitally it was my gall bladder, so against my intuition, I had it removed, and of course the problems did not improve.

Finally, I was SO sick. I gained a ton of wiehgt, had no energy, pastey skin, etc... I was constantly sick and thought maybe I had cancer or something. Every test I took came back negative, except some barely elevated liver enzyme levels. On the advice of an online friend, I did a Total Elimination Diet, and I went down to 6 foods. I started to feel better, slowly, but I was HUNGRY. I added foods back in, and after a couple of retrials, we figured out I could not have gluten or dairy or pineapple.

Armed with this info, I had blood tests, including the genetic test, and an endoscopy. It turned out the doctor only took TWO samples for the endoscopy, contrary to what I'd asked for, and of course, they came back negative. The blood tests, including my DNA sample, came back negative. I don't even carry the normal gene for celiac disease.

The thing is, I don't believe I only have "gluten sensitivity." I've been exposed, and I get majorly ill, with psychotic episodes even! How can this be? The doctor I saw told me that the chance of me having celiac disease based off my DNA alone would be .0001%.

*sigh*

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I don't know about the genetic test (still learning myself) but if you weren't eating gluten before the blood tests or endoscopy that would make the tests negative regardless of if you have celiac or not.

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First let me say, I'm so sorry to hear how sick you have been. It is miserable to be that ill and have no health professional who can pinpoint the problem.

The other poster is correct that your tests were probably slanted because you had been on a gluten-free diet. If you post your genetic test results here there are those who can give you a second opinion on those.

Now, even with all that, you could still have celiac disease or GI. Does the label really matter to you? The results are the same, you need to be on a gluten-free diet. You've even discovered additional foods you are sensitive to. No matter what any dr tells you, you should listen to your body. You want to feel well and your body is telling you what it needs and doesn't need to be well. There is no need to feel hungry on our diet, however, many people do feel increased hunger for awhile. Again your body is telling you what it needs, ignore what you've been taught and give your body the food it needs in the quantities it needs. Even if it seems like too much food, for now give it safe foods as much as it wants. In time the extreme hunger will level out.

You may also have some vitamin defiencies. You can ask your dr to test you for these if you choose. Many of us supplement A, D, magnesium, B12, B complex as well as a multi vitamin.

I hope this is helpful to you and you start to experience feeling great soon!

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I am normally a pretty easy going person but I get so angry that doctors are so behind in the genetic testing in the US and that they think the lack of those two recognised genes are absolute proof. It makes me really glad I was firmly diagnosed before I had gene panels run. I am glad to hear you don't believe it and are going on with the diet. I have a feeling you are going to be a different and much happier and healthier person soon.

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I have have negative tests too and I dont' believe it for one second.

The more I read about celiac and non-celiac gluten sensitivity/intolerance the more I am convinced that a LOT of people are intolerant to gluten no matter what you call it.

And according to lots of stuff I have read celiac isn't necessarily the end result of gluten sensitivity. Some people have all the symptoms and no villous atrophy. I think I am one of those people. I am getting my testing done by enterolab and then I will know for sure if gluten (or soy, milk, eggs or yeast) is the enemy.

Despite what the medical community says, you SHOULD listen to your body and don't listen to them if they say there is nothing wrong with you. My drs. have been very little help to me. I feel like I am on my own to discover what to do. The forums are great for getting questions answered and support.

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