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Anonymousgurl

New To This, But Not *official*

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It is not uncommon. None of us were officially dx'ed. Only my daughter has even had the blood tests and they were always negative. She is the only one who had GI symptoms. The rest of us have done Enterolab testing and gone gluten free from that. I think it is a good thing because it is not on our insurance records.

You don't have to have a doctor's permission to go gluten free.


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

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Welcome to the board! We are happy to have you here!!! :)

There are two very potential possibilities:

You have Celiac and for some reason, your bloodwork is not picking up on it. The biopsy can easily miss damage, because it is such a patch disease.

You could have non-Celiac gluten intolerance, which is a non autoimmune disorder, but many people have the exact same symptoms that a "true" Celiac does. Going gluten free helps them just like it helps a Celiac.

On this board, we really don't care if you have an official diagnosis or not....if you do better on a gluten free (and, other things!) diet, then this is the place to find support and information. You don't need a doctor's prescription to be gluten free....just remember that! Let us know what we can do to help!

Take care,

Laura

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I never had a medical diagnosis, just a dietary one.

Welcome to the board!


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Yeah, I should've added that there are plenty of people on here, like Jestgar, who don't have an official diagnosis. That doesn't make them "lesser" on this board, by any means....no one on here will question if you feel better gluten free. Dietary positive response is just as important!

Some have the gold standard (positive bloodwork AND biopsy), some have one, some were tested/negative, some were never tested, etc. etc. Some have doctors who supported their decision w/o a diagnosis, some don't, etc. We have all come from various path, but I guarantee you, there are plenty who have walked in similar shoes!

Laura

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I havent been diagnosed officially either, but the gluten free diet healed me from some serious neurological symptoms like weakness and numbness. I couldnt wait to be diagnosed because my symptoms were so severe and I already had the suspicion that gluten was the problem. I tried to see the doctor but I had to wait a month and I was just ready to get on with it.

When it comes to healing, everyday counts.

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Thanks everyone, that comforts me. You're all so welcoming and willing to help! Thank you so much for your kindness. It's so hard to find people who understand...I mean, I'm REALLY sick...and people just don't understand why, or they think it's all in my head or I do this to myself (and lose all this weight on purpose). But ANYWAYS...thank you so much for understanding that gluten can make people seriously ill!

I was just wondering if anyone could reccomend me to any helpful websites...I know the basics of the diet but I would just love to find a website with ideas, stories, hints, tricks, trips...anything....

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This is by far the best site for celiacs on the internet. I have learned more here than anywhere else. If you need any information about anything at all, just ask. Chances are someone here knows. I would also suggest ClanThompson.com. They have lists of gluten-free food and a lot of other resources. I hope this helps.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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If you get better gluten-free/casein-free, then you have your answer and need to look no further. If you don't heal completely and still feel bad, your intolerance might be because of some other problem and you'll need to keep looking. Either way, it seems that you feel better off gluten ... food sensitivities can be a symptom of another problem. My gluten intolerance is most likely a result of my Lyme Disease. I felt a lot better when I first went gluten-free, but then stopped progressing in my healing. If you get completely better gluten-free, then you can assume that's your "only" problem ... if you don't, keep looking for whatever else may be causing the trouble.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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If you get better gluten-free/casein-free, then you have your answer and need to look no further. If you don't heal completely and still feel bad, your intolerance might be because of some other problem and you'll need to keep looking. Either way, it seems that you feel better off gluten ... food sensitivities can be a symptom of another problem. My gluten intolerance is most likely a result of my Lyme Disease. I felt a lot better when I first went gluten-free, but then stopped progressing in my healing. If you get completely better gluten-free, then you can assume that's your "only" problem ... if you don't, keep looking for whatever else may be causing the trouble.

That's ironic Carla, I happen to have a co-infection of lyme disease. I'm infected with a lot of parasites and infections. Are you being treated for lyme disease?

I was also wondering how people first felt when they just began to go gluten free? The first couple of days felt great...but then all of a sudden I'm having some trouble again. Did this happen to anyone? How did everyone feel in the beginning?

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In the beginning of going gluten free. Your body will go through many changes. Youll get better, then feel a little worse later, and then feel better again, etc. etc. But their will be a point when you can feel a major difference and youll get there.

Think of it like this. You body is reacting to gluten as if it were a toxin. Now youve eliminating that toxin that has done a lot of damage. Now you are detoxing. Detoxing is a process and makes you feel pretty lousy for a time. To make things easier, consider purchasing a good digestive enzyme like Enymedica. This will help take some of the burden off your digestive system and help you to break down your food better. Also probiotics are good to help replace good bacteria in your gut. Also aloe vera juice is good for healing the lining of the intestines.

Hope this helps

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