cdwiggy

A quick update in case anyone is frantically googling like I was: I received a new referral to a GI who immediately said “oh, you have celiac disease.” I ate gluten for 8 weeks and had an endoscopy Nov 10th and was told to stop eating gluten again immediately. They called me on November 27th with my biopsy results: negative. Cue anxiety. They happened to ...

I can't get any doctor to admit there's a link between my fatty liver and celiac disease. Of course, it might not be but I'm hoping that cutting out gluten will help one way or another. Unfortunately, it looks like it's going to be months before I can have an endoscope done and I can't continue eating gluten until then. I'm just going to have to deal...

I think I'm going to request a referral to the Stanford center. I searched for a celiac specialist before my horrible visit and Sacramento doesn't have any in my health insurance network. I still haven't heard back from my GP, which is why I haven't posted on here. I was really hoping to have an update.

Oh my gosh, that is an amazing turn around! I'm already seeking a second opinion and even if they won't send me to another GI I'm going to stop eating gluten. I'm glad you're doing so much better!

After I received my test results, I stopped eating gluten for the most part. After I stopped, any time I ate anything containing gluten I noticed that I felt bad afterward. I ate two cookies on Tuesday and I'm still recovering from that, GI-wise. The foggy head only lasts a couple of hours. Before I cut back on gluten, I noticed that I felt absolutely awful...

Interesting! I'll have to check and see if my liver enzymes were checked the last time they did labs, but I've never had issues before. Do you (or does anyone) know of a resource to find a GI that specializes in celiac disease? I tried to look before I was referred to the one I saw yesterday, but I didn't have much luck. I'm near Sacramento if anyone...

I am definitely getting a second opinion! I can't keep feeling awful all the time. Thank you for the encouragement!

That's what I understood, too, but he made it sound like they were all worthless, and from what he said I just assumed he was talking about the less specific test. I'm definitely getting a second opinion after everything everyone has said here!

Oh wow, that sounds tough! My foggy head definitely got better when I quit eating as much gluten, and I have definitely noticed that it gets worse when I eat anything with gluten in it. Apnea scares me because I have issues falling asleep (but not staying asleep) and I feel a CPAP would make falling asleep even harder. I'm so glad I found this board now because...

Thank you for the links! I've been looking around the site for information and it has been so useful! He mentioned non celiac gluten sensitivity, but immediately said that he doesn't recommend going gluten free for anyone without celiac. I think I'm going to disregard the entire visit and seek a second opinion or, like ravenwoodglass said, see if my...

I wish I was making this up -- he said it was a false positive. I really don't think he knew the difference between the old gliadin tests and the deamidated gliadin test because he said "I don't understand why they even do this antibody test anymore." I didn't argue with him because if he didn't know the difference between the two I don't want him treating...

I have a sneaking suspicion that he meant "you don't look emaciated" when he said I don't have any of the symptoms, based on his insistence that all of my problems were related to my weight. He suggested I lose 100 pounds, which would make me weigh less than I did at 13 years old (and I was not an overweight child), and recommended weight loss surgery, which...

Was your foggy headedness related to gluten ingestion? I only get it when I eat gluten. It passes after a couple of hours and I'm fine when I eat gluten free. I've already messaged my PCM about all of this, so I'll see if she thinks I need to go for a sleep study. I have military health insurance, so I have to have a referral for everything.

Hi all! I went to my primary care doctor at the beginning of May with major GI upset and a super foggy head. I am overweight, so she immediately thought it was my gall bladder but ran multiple blood tests, including a celiac panel. The only test that came back abnormal at all was my celiac panel. An abdominal ultrasound came back normal, with the exception...