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Old 03-18-2011, 02:28 PM   #1
2Tiggers
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Celiac Disease

Just wanting to get some adivice from others with celiac disease.

Mainly about testing for it. I had the blood test and it came back as low. I haven't seen a gastro docotor as of yet and I am wondering if I will have to go through with the endoscopy. Is that something that you have to have to be diagnosed? Is it done in the office or at a hospital?

Also how long did it take for your symptoms to go away? Did you take any medication (like steroids) to help with symptoms until your body healed itself from eating gluten free?

I have been eating gluten free for a week and a half now. It will take 6 weeks to get into the gastro doctor then who knows how long til the endoscopy. I can't wait! I am not eating wheat and I am hopeing to get better. I have skin problems that we think are associated with celiac.

I am just tired of it and I would like some answers! I am going back to my family doctor tomorrow. I am tired of itching!

So, any advice for me and or discussion or your story with it and the road to your diagnoses would be helpful!

Thanks!
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Old 03-18-2011, 02:47 PM   #2
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Quote:
Originally Posted by 2Tiggers View Post
Just wanting to get some adivice from others with celiac disease.

Mainly about testing for it. I had the blood test and it came back as low. I haven't seen a gastro docotor as of yet and I am wondering if I will have to go through with the endoscopy. Is that something that you have to have to be diagnosed? Is it done in the office or at a hospital?

Also how long did it take for your symptoms to go away? Did you take any medication (like steroids) to help with symptoms until your body healed itself from eating gluten free?

I have been eating gluten free for a week and a half now. It will take 6 weeks to get into the gastro doctor then who knows how long til the endoscopy. I can't wait! I am not eating wheat and I am hopeing to get better. I have skin problems that we think are associated with celiac.

I am just tired of it and I would like some answers! I am going back to my family doctor tomorrow. I am tired of itching!

So, any advice for me and or discussion or your story with it and the road to your diagnoses would be helpful!

Thanks!
IF you're trying to get to the gastro and do endoscopy then do NOT eat gluten free. All you're going to do is make that endoscope results come back inconclusive because you will essentially be healing up this whole time. If however you are getting better eating gluten free and you don't care about the endoscope / biopsy results, then continue doing what you're doing .
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Old 03-19-2011, 06:01 AM   #3
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I am booked in for an endoscopy next week. One of my blood tests was slightly elevated, and the gastro doctor said that alone is not enough to make a diagnosis. I have continued to eat gluten as I want my results to be accurate.

My procedure is being done in hospital as a day patient, but I am on the other side of the world so that may not be relevant to you!
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Old 03-19-2011, 07:48 AM   #4
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I've got a question for you. If the tests come back negative, will you try a gluten free diet anyway? Many people test negative yet benefit greatly from a gluten free diet. Those whose symptoms are beyond the GI tract frequently test negative. I'm not sure why the scientific community considers ANY IgA antibodies to be acceptable since their presence means SOMETHING is going on. Besides have levels below technically diagnosable, biospies aren't always exactly as doctors expect to see. I don't have the typical pattern in my pathology yet I do have abnormal lymphocytes and peptic ulcers in the exact area you'd expect to see damage from celiac yet I don't have a celiac diagnosis.

I guess my point is that even if a doctor says you don't have celiac, if the blood tests aren't completely normal and the pathology isn't completely normal (get copies of all the results to read for yourself) then give a gluten free diet a try. There are a variety of different diagnoses that benefit from a gluten free diet.

You do need to be eating gluten right up to the test for any chance of a positive result.
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Old 03-19-2011, 06:46 PM   #5
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Quote:
Originally Posted by clanmcculloch View Post
I've got a question for you. If the tests come back negative, will you try a gluten free diet anyway? Many people test negative yet benefit greatly from a gluten free diet. Those whose symptoms are beyond the GI tract frequently test negative. I'm not sure why the scientific community considers ANY IgA antibodies to be acceptable since their presence means SOMETHING is going on. Besides have levels below technically diagnosable, biospies aren't always exactly as doctors expect to see. I don't have the typical pattern in my pathology yet I do have abnormal lymphocytes and peptic ulcers in the exact area you'd expect to see damage from celiac yet I don't have a celiac diagnosis.

I guess my point is that even if a doctor says you don't have celiac, if the blood tests aren't completely normal and the pathology isn't completely normal (get copies of all the results to read for yourself) then give a gluten free diet a try. There are a variety of different diagnoses that benefit from a gluten free diet.

You do need to be eating gluten right up to the test for any chance of a positive result.
I will most definitely be going on a GF diet regardless of the results. I am all set to start as soon as I have had the test. I am really annoyed that my doctor had not suggested this earlier as I have had these symptoms for years and keep being told that it is because I have three young children and am not looking after myself properly.
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Old 03-23-2011, 09:19 AM   #6
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Originally Posted by buffettgirl View Post
IF you're trying to get to the gastro and do endoscopy then do NOT eat gluten free. All you're going to do is make that endoscope results come back inconclusive because you will essentially be healing up this whole time. If however you are getting better eating gluten free and you don't care about the endoscope / biopsy results, then continue doing what you're doing .
I agree with this poster. You need to eat gluten in order for the biopsy to come back positive. They can do this procedure as in office or in the hospital. It depends on what the doctor usually does, and sometimes on what your insurance will pay for.

Also like clammmcollough (sp?) said, if it makes you feel better to eat gluten free than maybe you should do it regardless of what test results are. Good luck
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Old 03-23-2011, 09:23 AM   #7
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Originally Posted by Jade+3 View Post
I will most definitely be going on a GF diet regardless of the results. I am all set to start as soon as I have had the test. I am really annoyed that my doctor had not suggested this earlier as I have had these symptoms for years and keep being told that it is because I have three young children and am not looking after myself properly.
Sorry to hear it is taking you so long to get help. Unfortunately, so many people with Celiac or other issues go years to get diagnosed. My friend at work went 7 years and lost so much weight her family and friends thought she was on drugs. She looked so sick and they couldn't help her. So hopefully you will get the answers that you are looking for, and if not just going GF hopefully will make you feel better. Good luck!!
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Old 03-23-2011, 03:38 PM   #8
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Not only did my son have an upper endoscopy, and a colonscopy, his GI did a genetic test as well.
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