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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Blood Test Results Within Normal Ranges
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8 posts in this topic

So I've gotten the infamous blood test results back. "All within normal range, everyone, nothing even inflamed" You don't have Celiac Disease. That's great right?

Explain to me why I am now on the verge of tears and completely breaking down?!?!

Nobody wants this diagnosis. I will take this and being told I can never have gluten again over being in pain every single day. Running to the bathroom so many times my co-workers and family think I am insane. Losing weight unhealthily. Feeling exhasuted, nasueated and unable to consume ANYTHING. I even missed half of work yesterday.

The kicker here is the GI doctor didnt even schedule a follow-up appointment to search for ANY thing else that could be wrong. Not even to stick me with the official IBS label. :angry:

So what do I do now? Go gluten-free? Send in samples to EnteroLab? So frustrated. :( I just don't want to see another doctor.

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If your doctor's not going to test you for anything else you have nothing to lose.

richard

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I can relate to your story, mine is the same, exactly. I was told 5 weeks ago that I'm fine with a touch of IBS. BS for sure!

I have been Gluten free for 5 weeks and I stopped the bathroom dashes completely, I feel so much better. Just yesterday I sent in the EnteroLab stuff so I'll see what comes back there. But in my book I just feel so much better now that I'm gluten-free. Its been a huge change.

Its hard to give all gluten products up and it would be awful to do if you didn't have to but if you go gluten-free and feel a lot better, then I think that tells you something really important.

Keep in mind doctors don't know everything, they simply help us with our health decisions.

Susan

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Susan & Richard,

Thanks. You're right, nothing to lose. I Had just gotten off the phone with the doctors office when I posted that message, so I was exasperated to say the least. I've had other health issues that I've been tossed around with at the same hospital and I think this is the last straw! :)

I've d etermined to go Gluten Free. I did it for a week and felt better, even glutend myself once with some rice cakes that weren't exactly gluten-free. Felt immediate symptoms. Its got to mean something! :)

Susan its nice to hear you've had such positive results. Let me know how Entero Lab turns out. I can't get there website to load today!

All in all, I know I can go gluten free w/o a pat on my back from the doctor to say "Go ahead'. But theres some part of me that would of really liked that affirmation that I'm not nuts! :) You guys are that confirmation for me!

Thanks so much.. This board is wonderful.

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I am right there with the rest of you. Got my blood tests back on Friday and all my doctor's assistant said is that it was "negative for a wheat allergy". Considering that isn't even what I was tested for, I thought it was amusing, especially since I can't even get my GI to return my calls.

Bottom line is I did the gluten free diet as a last resort because I was so deperate to resolve my "IBS" that I have dealt with most of my life. After only three weeks, I feel about a 70% improvement in my IBS symptons, and marked improvement with my headaches, anxiety, and PMS symptoms.

It would be nice to be validated, so I too am going to try the Entero testing as well as the York. It may cost a little money, but if I am feeling better, I don't care!!!

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This is definitely the problem with the US testing/diagnosis of celiac disease. Here, either you have celiac disease or you are FINE. Isn't this like telling a smoker, "Hey, you don't have lung cancer, why give up smoking?" Just because gluten causes your body to react in extremely negative ways, just because you feel awful 90-100% of the time, is that a good reason to give it up? According to so many doctors, no. Why? Because it is "too hard." <_< Or, other variations on that theme.

According to one of my kids' pediatricians, the only way to definitively determine if you have a problem with gluten is to go off it. If you have a positive reaction to a gluten-free diet, try something with gluten in it. If you react badly to this, you KNOW you're gluten intolerant or sensitive! Her stance is, if something you're eating adversely effects you, it is obviously doing something to you that is not good and why eat something that makes you feel miserable? (Now, the other pediatrician at the office gave me the "too difficult" lecture. HAH! He didn't even want to run the blood tests. :angry:) I'm with the good pediatrician on this issue. :P

Also remember that celiac disease, DH and gluten sensitivity/intolerance is an area that is being studied as we sit (run to the bathroom, moan in pain, scratch... :blink:) Not everything is known about it yet. How would you feel if, because of the difficulty of following a gluten-free diet you decide not to (as per your gi's advice even though your body tells you this stuff is not good for you) and, 20 or so years from now are incapacitated by a condition that has become linked to gluten sensitivity?

Hmm, I think I have an opinion on this. :lol:

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I just want to give you a big ol' hug! :)

Let me tell you something. I have been through heck forward and backward in my short life. Everyday scientists are coming out with "new genes" found linked to various disorders. I was told that I had IBS until some genious dr. decided to test ANA, white blood cell count, etc....and found out I was all out-of-whack. When we started searching for answers 15 years ago, doctors told me that I was a hypochondriac. :(:angry: You know what??? It shows their ignorance. Years later, with the correct blood work and doctors, it was discovered that I have MULTIPLE auto-immune disorders, and the "spells" that I had as a child were actually SEIZURES! Somebody finally got wise enough to do a MRI and PET scan and it turns out that I have a scar on three lobes of my brain and irregular blood metabolism too! :blink: For how many years was I a juvinile hypochondriac?....until I found a couple of good doctors.

My point is, believe in yourself! Only you know how YOU feel. And if you are feeling better gluten-free, good for you! B) Find yourself a doctor who is not content "settling" for what other doctors have already proved to be true...we would never have any new advances in medicine if some doctors weren't out there looking for alternate explanations and identifiers for people's physical problems.

I hope you stay feeling better and better! Much hugs and blessings. -Julie ;)

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hi

i posted something in one of your other threads too. i am sorry you are having to go through this. my recomendation is that you get another doctor, and keep looking until you find a good one.

i had a terrible experience with a lousy doctor once too. I was crying in her office because i had been having stomach problems for so long and didnt know why, so guess what? she disagnosed me with depression :angry: HA i went running out of her office and never went back.

i will also tell you, that giving up gluten can not hurt you, but it may be another food intolerence or some other problem, so i really feel you should look into other food intlorences and find another doctor so you can get to the root of the problem. giving up gluten may help becaus when your stomach is messed up its harder to digest wheat, dairy etc, but there may be another underlying problem too.

i did have a postive test for gluten, but i am still having problems sometimes, so i am still searching for other things that could be causing problems. ( corn is one thing that i recently discovered causes me problems for me.)

anyway i will quit rambling now, but i wish you the best of luck.

take care

lillie

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