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Confusing Diagnosis Process


Newbyliz

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I have been aggresively trying to figure out what has been wrong with me for the past 18 months. I am 40 years old and have dealt with loose stools, fatigue and all over joint pain for 7 years. The results I have received so far are: vitamin d deficiency, vitamin b12 deficiency, esophagitis, chronic gastritis, duodenitis, delayed small bowel transit time, negative blood tests for celiac, postive gene tests for celiac, and the biopsies that were performed were negative BUT they were only taken from the 2nd portion of the duodenum and not the duodenal bulb where the inflammtion was noted. I have now been told by my 3rd gastroenterologist that he would like to do another upper endoscopy so that he can carefully inspect every inch and make sure he takes sufficient biopsies in ALL locations. My question is can you have negative blood tests, negative original biopsies with positive gene tests along with active symptoms and celiac be the problem? Going gluten free is a huge endeavor and I feel that I need to be completely sure before I go this route. I would really appreciate any input to this post. This whole process has been quite exhausting and frustrating.

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wjle
Like you, I have gone through decades of misdiagnosis. Yes, even with all those tests, they can still miss the problem. Not only I am allergic to all fruit (not intolerance, but a true allergy) but found out all my aches, pains and fatigue is due to gluten in the diet. Finally found a good doctor. Found that celiac from a simple colonoscopy. Also found intestines destroyed and have to eat pureed vegetables, that was even harder to do. Trouble is, if you go on a gluten free diet, then get tested, the doctors will say you don't have gluten problems. I would keep the money and not give it to the doctors and start a gluten free diet. It takes time for the body to heal so there may not be a dramatic change for two weeks, sometimes more. Others reported changes within days. Be patient. There is a lot more help on eating a gluten-free diet now. More and more stores provide gluten-free food. They will order some in by case if that is feasible for you. By the way, the list by Scott is better than the one I got from the doctor's office. This is best website I have seen. If it isn't this problem, then at least you will know and go back to eating gluten. Then maybe check for allergies. Wish you the best.
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happybingf
I'm not an expert, but have heard of this with gluten intolerance. I tested positive on blood, but neg on biopsy, although it may have not been done correctly and I was unable to repeat due to cost. Going gluten free is a pain, costly and often frustrating!! But my labs are all back to normal...no anemia, Vit d & B12 norm, inflammatory markers way down, and best of all after years of joint pain and fatigue, way better!! Although you should definetley make sure it's not some other disease, if you trial gluten-free and you feel better, no matter what tests show, you could probably assume this is at least part of the problem. And it doesn't hurt to try it if done correctly, the benefits can be life changing!! Good luck too you!!!
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mom1

I have been going through the same sympstons since my son was born. For the past 2 yrs I have been sick (loose stools, weight loss, chronic fatigue, longer menstrual cycle, etc...) and have done many procedures and two G.I. My first Doctor thought I could have IBS. I recently went for a second opinion but nothing was found and my celiac test was negative. My symptoms are too extreme for IBS and I can't gain any weight. There are times that I get sick immediately after in taking food. I did my own re-search and decided to go gluten free for a month. There is such a thing as gluten free intolerance. I'm also confused! =(Thanks,Kat. :unsure:

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