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What To Expect From Here?


Leelee<3

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Leelee<3 Newbie

Hello, well first off let me introduce myself. My name is Leelee and I'm a 20 year old college student. I've had umm a lot of digestive issues for quite awhile that I honestly did not pay attention because I was told they were nothing to worry about and it just became pretty normal for me, I have also been anemic for quite awhile. While back I was getting so sick and kept on telling my doctor and after months of not doing anything she finally did a blood test which turned up that I was deficient in vitamin A. That ended up just being a mess as she accused me of being anorexic (I have always been extremely thin) and it was just unfortunate. I ended up being treated for the deficiency with vitamin A injections, and after repeated testing I just wasn't getting better like I should've been. So finally after another few months and tests it has been found out that I MAY be a celiac. She's told me that it may not be the case but referred me to a gastroentorologist.

Now here's where my questions come in. I have the appointment on Friday and I'm just wondering generally what I should expect to happen at this appointment. My doctor mentioned that they would probably do a biopsy, so I assume that will need to be scheduled for another day. How long do you generally have to wait for one? and how long to get the results back? I'm just anxious and ready to get this over with haha.

Thanks everyone!

btw, I'm totally switching from the doctor that told me there was nothing wrong with me, accused me or anorexia, and wasted months and months of my time. I already did not care for her but this was the cherry on top.


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ravenwoodglass Mentor

The GI doctor will likely take your history. He may order celiac panels if your regular doctor hasn't already. It might be a good idea to get copies of the lab work to bring with you. You have a legal right to them so don't let them tell you that you can't have them. If your blood work is positive rarely a doctor will diagnose on the basis but usually they do want to do a biopsy. Yes that will need to be scheduled and won't be done that day. How long it takes to get one depends on the doctors office and how far ahead they are booked. Do make sure you stay on gluten until after all testing is done. The day of the biopsy you can start the diet, you don't need to wait for the results. Keep in mind there are a lot of false negatives on both blood and biopsy so do try the diet strictly after testing is done.

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
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      Does my iron loss sound like celiac to you?
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      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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