Walking Back

[Janelson]

Well I finally listened to my mother and went to the Gatronoligist. I hate doctors because I never seem to get good news but my friends all told me not to worry and that Im sure they will just tell you to keep up the good work on being gluten-free. The Doctor walks in and pulls the floor from my feet to watch me fall. He told me that he doesnt think I have Celiac Spru. He said that the blood test my original doc. gave me they dont even use anymore for celiac. Also he said that in my chart the doc. that did my biopsy both colonoscopy and endoscopy said that my symptoms match but from what he saw there was no damage to the Villi. However the nurse, who I should have questioned cause she lost my file and then just read it for the first time over the phone with me, anyways said that it looks like what we expected celiac. No he said symptoms match but physically it does not. So he said eat wheat. How do I change my entire life and spend so much time getting use to this new lifestyle to just tell me that they dealt me the wrong hand......when I played the game and I followed all the rules and now this! Whats wrong with me is what I asked him and I got the famous...well we are not sure yet. Those words put the fear right back in the bottom of my stomach and that is a feeling I do not miss. I just finally adjusted to having Celiac after I spent 6 months of reserching and dieting and all the specialty foods I ordered. The dinners I didnt eat at the parties I didnt drink at. Celiac may not have been the most exciting thing to have but it was an answer and I was happy with that.........now I dont know what to do anymore.

[Rachel--24]

I'm confused.

What tests did you have done originally that gave you the celiac dx?

Also did the diet help you? Did you feel better? If you did find relief from your symptoms how do you know that this new doctor is not wrong?

If the doctor is going by the results of the biopsy alone that doesnt completely rule celiac out. A negative biopsy doesnt mean you dont have it.

[Janelson]

I'm confused. 

What tests did you have done originally that gave you the celiac dx?

Also did the diet help you? Did you feel better? If you did find relief from your symptoms how do you know that this new doctor is not wrong?

If the doctor is going by the results of the biopsy alone that doesnt completely rule celiac out. A negative biopsy doesnt mean you dont have it.

<{POST_SNAPBACK}>

I am not even sure what blood test I had done. He just said it was what they use to use but now there are new blood tests and they dont use that one anymore cause its not always correct. I did and I didnt find relief. I mean these last few weeks I felt fine and I even ate wheat by accident. But I dont understand what it is then! I mean I had every symptom from the brain fog, hair loss, in the bath room all the time, bad teeth, stomach cramps, stomach bloating ect. I even got a small rash on my ankle one day that was these small blisters, it didnt itch or anything but it was just like that one rash that celiac get (I totally forgot the name but you know what I mean). I mean what is wrong with me then! I have aten wheat now since friday believe me tons of it as soon as he told me I could I binged on wheat! I dont feel sick either! If your confused....imagine how I feel! I feel like I will never know what is wrong with me and every doctor and family member I say that too just shakes their head and says hang in there. I feel like I am screaming at them for help but no one will listen anymore...like they dont care!

[Ursa Major]

Janelson, sometimes the ONLY symptom of Celiac disease is iron deficiency anemia! And at times the villi aren't damaged enough to be easily visible, it takes a trained eye to see it. I just found you a link somebody else posted elsewhere on this board. It's long, but worth reading. If you find that you have any of these symptoms, your doctor may be wrong.

Open Original Shared Link

A lot of doctors are woefully ignorant on Celiac disease, even the ones who ought to know.