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Posted 26 January 2004 - 12:31 PM

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 “sick” I hate the thought of eating anything, I am anxious all the time, and everything hurts. I feel like I am super-sensitive to everything. I never had allergies, now I sniffle all the time. I never had pms, now every month gets worse and worse. I have trouble sleeping, I don’t exercise because of lack of energy, and I am all-around anxious, irritable, tired and foggy. I have been on every anxiety and depression medication to no avail. Four years ago my gallbladder was removed (which stopped the excruciating pain but not much else!) I had no gallstones, just a non-working gallbladder. I feel like my brain is always keyed-up but my body is slow. I have dark circles under my eyes, and I look like death. I am 27 years old. I feel like many doctors have thrown pills my way and misdiagnosed me due to being young and female, but perhaps I am in denial and feel the need to blame someone for not “fixing” me. Anyway I currently have no health insurance (I stopped working over a year ago because of all my symptoms) but all the tests in the past came back negative. (I am still unclear what these tests were) What I wonder is, If a doctor two years ago says he tested me for celiacs disease, is it possible it came back negative and it was wrong? Do my symptoms sound like anyone else? Could all this really be mental? I have my thyroid tested every year, and they tell me I have antibodies present but it is functioning normally, I have had allergy tests done and told I just have bad plumbing. I seem to be resistant to any medications, and so far on paper I am the picture of health. But in person I feel poisoned, I am wasting away (have lost 55 pounds in 4 years, and struggle not to lose anymore). I wonder if anyone has been tested negative before a positive result? I wonder why all of a sudden people are calling me after reading a magazine article and insist this is what is wrong. Also, with no health insurance, are there places to go that offer any kind of testing? My eating is so disturbed right now that I am in no position to “try” a gluten free diet without help. If anyone has a similar story, please let me know. Thank you.
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Posted 26 January 2004 - 01:00 PM

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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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

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Posted 26 January 2004 - 01:27 PM

[/QUOTE]What I wonder is, If a doctor two years ago says he tested me for celiacs disease, is it possible it came back negative and it was wrong? Do my symptoms sound like anyone else?[QUOTE]

Hi MindyP, I am so glad you found this place :) . As I was reading your story I thought, this sounded JUST like me last year :( . I too was sick for a while and went through every test known to man only to have my GI doctor tell me I had IBS. I refused to believe that, I knew there was something more going on. IBS to me is an "I don't know" diagnosis and was unacceptable! I also lost 40lbs in two months. My doctor tested me for Celiac but said I did not have it. I also had an endoscopy with a biopsy that showed "patchy inflammation" he continued to dismiss Celiac because of my negative blood work.

I agree with Tarnalberry, you could try the gluten free diet for a month or so to see if you improve and if it does you will know you have Celiac disease or a gluten senstivity. If you want a doctors diagnosis and know for sure you can take the same route as I did. I ordered a stool panel test from Enterolab I think the cheapest test is around $100.00 but well worth it. After over a year of being SICK I finally received a positive diagnosis. I immediately started a gluten free diet and feel better than I have in a long time. I still have some lingering symptoms but I know they will eventually go away!

I know it is hard to explain to doctors what your gut feels like and as long as you look healthy doctors don't think you are sick. I remember when I went for my upper GI series, the doctor said "you look like a healthy young woman". Well I may look like that but I sure don't feel it!

I hope you get some answers soon and if I can be of help just let me know.
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Posted 26 January 2004 - 01:28 PM


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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