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GPPizza420

Do I Have celiac disease Or Not?

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I'm sure you all have a similar story, or maybe not, but either way, here's mine, hopefully someone has some advice on the issue. I have been very ill for the past year and a half, including but not limited to extreme weight loss, chronic diarrhea, bloating, cramping, malnutrition, etc. I have had every test under the sun performed: colonoscopy, upper endoscopy, CAT scans, MRI, blood work left and right, ultrasounds, etc. And here's the kicker, I'm 23 so everyone thinks I'm just a hypochondriac or something. Well finally, my P.A. decided to run a blood test for celiac disease. He said it came back POSITIVE for celiac disease antibodies or something. Well when I took this (good news, it helps to know WHAT is wrong with you regardless of what it is when you suffer for so long from a mysterious cause) news to my G.I. doctor he tells me he won't approve or recognize the results, that the antibody tests mean nothing. I had a biopsy of my inards somewhere and it was inconclusive. So what gives? I was told to try the gluten-free thing for three months, I've been gluten free for 3-4 weeks now and I feel great. I haven't felt this great in almost 2 years. Someone help.

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I'm sure you all have a similar story, or maybe not, but either way, here's mine, hopefully someone has some advice on the issue. I have been very ill for the past year and a half, including but not limited to extreme weight loss, chronic diarrhea, bloating, cramping, malnutrition, etc. I have had every test under the sun performed: colonoscopy, upper endoscopy, CAT scans, MRI, blood work left and right, ultrasounds, etc. And here's the kicker, I'm 23 so everyone thinks I'm just a hypochondriac or something. Well finally, my P.A. decided to run a blood test for celiac disease. He said it came back POSITIVE for celiac disease antibodies or something. Well when I took this (good news, it helps to know WHAT is wrong with you regardless of what it is when you suffer for so long from a mysterious cause) news to my G.I. doctor he tells me he won't approve or recognize the results, that the antibody tests mean nothing. I had a biopsy of my inards somewhere and it was inconclusive. So what gives? I was told to try the gluten-free thing for three months, I've been gluten free for 3-4 weeks now and I feel great. I haven't felt this great in almost 2 years. Someone help.

I think that this "doctor", and I use that term loosely, is very wrong - but many of us have had similar experiences. I think that you should dump him. If he's really a G.I. and hasn't gotten the Celiac message by now, he's a lost cause. There are many similar stories here, including my own.

The antibody test results, when positive, are almost 100% proof that you have Celiac Disease. If your endoscope exams were not for Celiac, the chances are that even if there is villi damage, you would not be diagnosed.

You could stay on the dietary path (gluten-free of course) you've been on, and get further testing via endoscope in the near future (at a competent practitioner) or go the Enterolab route. I


Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

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Guest cassidy

If you have a positive blood test for celiac then you have celiac. If you have a positive dietary response to a gluten-free diet, then you need to be gluten-free and you likely have celiac or gluten intolerance. I'm so happy for you that you have found something that is finally making you feel better and you can put a name to it.

There are so many ignorant doctors out there that are giving patients bad advice. Unfortunately, your doctor is wrong and you can either find another one, or just handle the diet yourself since you really don't need to be monitored or take medication for celiac.

Please don't let anyone convince you to go back on gluten, or that you are crazy or any of the other things that most of us have been through. You are one of the "lucky" ones that actually has positive blood work which can be used to make an official diagnosis. My bloodwork was negative but I feel like a new person on the diet. I'm not sure if I have celiac or gluten intolerance or what, and I go back and forth between wanting genetic testing or something that will give me a definite answer and not caring at all because I feel so great.

Hope things keep going well for you. Trust your body and the results the diet has given you and don't listen to that crazy doctor.

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Yes, I agree with everyone else.

If you see health improvement by going gluten free, then, by all mean continue.

And additional note, please make sure that you personal products are gluten free as well. This includes lotions, lipstick (gender related), toothpaste and shampoos. If you need some safe product information to start you on your way, please ask.

So glad that you are doing well.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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