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Hello, I have been reading through the boards with a lump in my throat on the verge of tears. it makes me happy to find so many people have found out what is wrong, and are improving, however I have had no such luck. In the past month three people have called me to diagnose me, and I have told them the same thing: I was tested years ago, and I don't have it!

But everything I read suggests i do. It has been seven years, after a road trip around the country, that I have been "ill". What started with "my stomach hurts" has turned into years of increasing agony, testing, and no relief. Years of prescribed meds have done nothing but turned me off to medication. My gallbladder has been removed, and i have been poked and prodded more times than i care to count. I have been told "IBS" and i REFUSE to accept that.

I started with small amounts of stomach discomfort, bloating, pains. Those pains became more frequent and turned into all-out episodes of excruciating pain almost daily. Then the diarrhea started. Every day for years now, I have been in the bathroom more than 5 times a day. Then started the food restrictions, some at the doctors orders (following diagnosis after diagnosis) and the medications. I took more and more pills, ate less and less, and went to the bathroom more and more. Then the first panic attack hit. It has been downhill ever since. For two years I have been

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Assuming your doctor did the right tests, which is a HUGE assumption, you may still have a false negative. And that's EVEN if he/she was being generous reading the results. (For instance, four out of my five tests came back "negative" - the lab doesn't have a quantitative number. Only my antireticulin IgG (I think) came back positive. Not exactly a classic diagnosis, and most docs would have said "Oh, you're not celiac." But my doc labeled the results "inconclusive", and I tried a gluten-free diet, and even though I'm close to asymptomatic, I still noticed a difference.)

Honestly, the easiest thing to do is to just try the gluten-free diet. If you keep things simple, it's really not as hard as it sounds. Particularly if you focus on eating whole foods that are obviously gluten free, like rice, vegetables, beans, fruit, meat, etc. You may find that - with a bit of help and advice - "trying" a gluten-free diet isn't hard. It's likely - at this point - going to be easier than getting a doctor to help you figure out what the problem is! It could mean a month or two of bland, boring food. But that may lead you to your final answer.

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Mindy,

You sound like me, only more so! I'm 27 years old, too, and I feel like my body has been slowly betraying me ever since I was born. Doctors have never been able to figure me out. I didn't have digestive symptoms until recently, though, so I fortunately haven't had to deal with the "cop-out" diagnosis of IBS.

Let me reassure you of one thing: NONE of this is in your head! It is all real, and it most emphatically DOES sound like celiac disease. It is definitely possible for blood tests to come back negative and be wrong--and the same is true of a biopsy. Tests for thyroid function are also of questionable value, since they say nothing about what is normal for YOU--just the mythical "average" individual. Allergy tests will not detect celiac disease, because allergies and celiac disease are mediated by different elements of the immune system.

I am sure you will want to have a look at Enterolab.com. They offer a panel of tests for celiac disease that are reportedly MORE sensitive than blood work or even a biopsy, and the price ($100-$400) is reasonable when you stop to think about it. I believe these tests are fairly new, which explains why they are not used by mainstream doctors yet--most doctors continue to operate on research that is ten to fifteen years out of date! As soon as I can afford it, I will be having myself and my children tested (and my husband as well, if I can convince him to play along), even though my intuition tells me I have found the problem and we are all doing much better on a gluten-free diet.

If you get to the point where you are ready to try going gluten-free, a nutritionist or dietitian FAMILIAR WITH celiac disease would be invaluable to you. Remember, too, that we are all here to help you through the adjustment process--just let us know how we can help!

I have noticed that celiac disease has been getting a fair bit of press time recently, which is wonderful! Now, perhaps, doctors will catch on that this "rare" disease isn't so uncommon after all, and people won't have to suffer needlessly for 27 years--or longer--before getting an accurate diagnosis! Good luck to you!

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    • Eeek confused! Positive biopsy, negative blood test???
      the whole celiac/doctor issue is as frustrating as it is common, unfortunately   my gp, who knows full well that i have celiac, tried to give me this new 'miracle drug' for ibs-d when i told him i was still having indigestion/inflammation for seemingly no reason.  "it's expensive, but i have a coupon for the first month"  O BOY LUCKY ME!  i told him, ok, that i would try it.  (i think i have an idea of what my problem is and i originally asked for something different to try to see if it would work.  he didn't even know what it was)  i'm not gonna try it.  it's a narcotic, it has side effects i don't need or are the same as my symptoms.  i'm gonna switch doctors.  and switch doctors again and again until i find one that KNOWS MORE ABOUT THIS THAN ME.  on top of that, they computerized all their records, which i have been going there for 20 years, ASKING WHAT I'M ALLERGIC TO!  i said:   umm, don't you have that in my MEDICAL RECORDS??!!  well, we have your paper records.  i said, i'm HERE.  don't ya think ya shoulda pulled my file out??  i mean, y'all knew i was coming.  you know, the appointment thing....... LOLZ yeah, i've been gluten free for 6 years, and this clown tells me 'you know, you can't drink beer'  i said yes i can.  he says no, you can't.  i said why not?  because of the alcohol, haha?  no, because it has hops in it and if you're celiac, you can't have hops.  i said it's BARLEY.  O MY GOSH!!!!!!!!!!!!  i said, you're the doctor.  rolled my eyes and left. welcome to the board  sorry for all the yelling, lolz.  
    • Eeek confused! Positive biopsy, negative blood test???
      Thank you! My PA said that she still thinks it's celiac....but I don't feel like she's fully explained why. Some people are hard to get a solid answer out of! I think I'm gonna get a second opinion somewhere else.....appreciate the feedback. Makes me feel a little less crazy
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    • I'm actually scared to go to the doctor and could use some advice
      Hello Elle Among this online community you are not alone in either your symptoms or how you feel about visiting the doctor.  I for one understand the anxiety that you are going through, my own weird nerve stuff and other puzzling symptoms have had me really scared at times.   So much you are going through could very well be gluten related, it really could.   But if it isn't, in the end it is worth trying to find out what it is going on so you can get the treatment you deserve. After all, it could have a really simple, treatable explanation, once the doctors know what it is. I remember reading on another website something that has helped me with my own health anxiety - if one can summon up the courage to go and see the doctor, one should pat oneself on the back and be proud of oneself for doing the right thing.  I'm not terribly keen on the idea of being a proud person - but I think it was meant in the best sense, and it is always good to do the right thing, even if one does it afraid!  It always makes me feel that bit stronger when I'm in the waiting room at the doctors! There is lots of great advice above.  Do take it and make sure you come back if you need further support. There are some fantastic people here to help.        
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