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CeliacRN

New With Questions About The Egd

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Hello! I just recently went to the doctor for all the symptoms I have been having for the past few months (with some) years for others and asked her if I could get tested for celiac. For one she didn't even know what it was and asked me to spell that for her, which was frustrating. I have a mom and sister who have both tested positive for celiac so I was pretty sure I knew what was wrong. She ordered the IgA test which came back positive with a value of 170. So she referred me to a GI doctor for an EGD. He couldn't see me until the first of December and I couldn't get the EGD until the middle of January! What a joke! So I called my doctor and told him that was unacceptable anad that I needed to be referred somewhere else where I could be seen immediately. In the meantime my symptoms have gotten way worse. Gas, bloating, stabbing stomach pain, constipation with loose stools, mind numbing fatigue, swollen lymph nodes and memory lapses. I decided to cut down to just having one meal a day that included gluten since I couldn't take the pain. I finally got in to see a GI this week (hallelujiah!) who told me that I needed an EGD and because I had cut down my gluten for 11/2 weeks I need to increase my gluten intake for the next two weeks. I had been starting to feel better and now in two days I am back to miserable and in pain and feeling awful. Is the EGD really that important? I can totally tell the difference when I eat gluten and when I don't and I have only read that the EGD is used to confirm that I have it. If I already know I do and feel better when I don't eat gluten so why should I continue torturing myself? I work in the medical profession and definitely see unneedeed tests ordered all the time. Sorry this is so long, I am just wondering if i is worth the pain to wait 2 more weeks to just get results for what I already know I have? Thank you or reading and any ideas are great appreciated.

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Its really up to you what you prefer to do. Is a diagnosis important to you? It is to me and I didn't get one, I wish I'd just had the biopsy when I had the chance. But there are lots of people on here who are comfortable knowing that gluten affects them badly.

If you decide not to and think that you can do a gluten challenge at a later date, just be aware that sometimes after being gluten-free for awhile your symptoms when you have gluten can be so much worse than before.

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If you had a positive blood test you need the diet no matter what the endo results are. It is entirely your choice as to whether you want to have one done or not. Some doctors will diagnose if you have been having symptoms, had a positive blood test, symptoms resolve on the diet and return if you accidentally get gluten. If you are going to have the endo the time to do it is now as like the previous poster said once you have been gluten-free and healed you may become very ill if you decide later to do the challenge and the challenge would need to be at least 3 months.

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Like Raven said it's entirely up to you if you want the EGD. It seems pretty clear that you have a problem with gluten and need to be off of it. I already knew I had celiac based on the blood work buy wanted the EGD to rule out other things as well. It served as a good baseline for me because 1 1/2 years after I went gluten free I had to have another EGD done. I was having bad symptoms and the GI doctor wanted to see what was going on. I had developed a peptic ulcer that wasn't there on my previous scope. You just have to decide if it is worth it or not. Being it's only a few more weeks it might be worth it. I had to wait a month.

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