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Is It Celiac


Chrisco

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Chrisco Apprentice

i have struggled with chronic nausea and other GI issues for 23 years. No doctor could ever figure out what was causing it. About 8 years ago a new doctor I saw felt strongly that it was Celiac. My blood test was negative but she was so sure it was Celiac that she sent me for an endoscopy. The GI doctor I saw was a jerk and told me that if the blood test was negative then that meant I didn't have it. He did the endoscopy but didn't test me for Celiac. When my regular doctor got the results and saw that the GI doc didn't look for Celiac she was beyond upset. She sent me for a DNA test. My DNA test showed that I do have the gene for Celiac. She stated that although that doesn't mean I for sure have the disease that for her it confirmed that I had it. I went gluten free for 8 months but didn't feel much of a difference. Because I didn't test positive in the blood test and because I didn't feel better on the diet I denied the diagnosis. Here I am 8 years later and I just keep getting more sick as time goes on. I started seeing a new doctor and he mentioned Celiac without knowing my history. I told him the above story and he didn't seam to have an opinion about it. Well I recently did a food sensitivity test. I am only sensitive to 3 foods: Gluten, Wheat, Bran. This had me questioning the Celiac diagnosis. Now I'm wondering if I really do have it. I see the doc on Tuesday and am thinking of asking him to do the blood test. Just wondering if anyone has any opinions on this. I know a sensitivity does not mean Celiac. I just found it coincidental that my highest sensitivity is to gluten. 


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Digging deep Newbie
2 hours ago, Chrisco said:

i have struggled with chronic nausea and other GI issues for 23 years. No doctor could ever figure out what was causing it. About 8 years ago a new doctor I saw felt strongly that it was Celiac. My blood test was negative but she was so sure it was Celiac that she sent me for an endoscopy. The GI doctor I saw was a jerk and told me that if the blood test was negative then that meant I didn't have it. He did the endoscopy but didn't test me for Celiac. When my regular doctor got the results and saw that the GI doc didn't look for Celiac she was beyond upset. She sent me for a DNA test. My DNA test showed that I do have the gene for Celiac. She stated that although that doesn't mean I for sure have the disease that for her it confirmed that I had it. I went gluten free for 8 months but didn't feel much of a difference. Because I didn't test positive in the blood test and because I didn't feel better on the diet I denied the diagnosis. Here I am 8 years later and I just keep getting more sick as time goes on. I started seeing a new doctor and he mentioned Celiac without knowing my history. I told him the above story and he didn't seam to have an opinion about it. Well I recently did a food sensitivity test. I am only sensitive to 3 foods: Gluten, Wheat, Bran. This had me questioning the Celiac diagnosis. Now I'm wondering if I really do have it. I see the doc on Tuesday and am thinking of asking him to do the blood test. Just wondering if anyone has any opinions on this. I know a sensitivity does not mean Celiac. I just found it coincidental that my highest sensitivity is to gluten. 

Hi, I  know how you feel. I am still awaiting my blood test results and did an allergy food test for 40 foods and environmental allergens but they were all negative.  I think you should definitely avoid those foods that you have a sensitivity to and since you have been  ill for a number of years,  it will take sometime to see a change. Your body will have to heal after years of damage.

There's a documentary on YouTube by Dr. TOM O'BRYAN called Betrayalseries;  you should check it out because it addresses  alot of these issues. 

Ennis-TX Grand Master

People can fail the blood test and still have celiac, the golden standard for the test is the endoscope with biopsy where they take several samples of your intestines and check for villi blunting and damage. You have to be eating gluten at least a cracker or half a slice a bread a day for 12 weeks prior to the blood test or 2 weeks prior to the endoscope (If I recall correctly). There is also such as thing as non celiac gluten sensitivity, which you might have if you still test negative for celiac. If you have the gene your going to want a retest every few years by the way especially if any of your family have it.

The progressively getting worse is a sign it might be celiac, your very lucky to have doctors that test for this, I spent years just getting worse and worse thinking I was going to die before they got me diagnosed. 

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      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
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