emilyyy

21 minutes ago, knitty kitty said:

@emilyyy,

Have you thought about getting a DNA test?  Celiac Disease is genetic.  You must have at least one of the genes for celiac disease to develop.  You don't have to be consuming gluten for a DNA test.  

What is being done for your low iron?  Low iron is common in newly diagnosed Celiacs.  

In the early stages of celiac disease, intestinal damage can be patchy or beyond the reach of an endoscopy.  Biopsy samples need to be examined under a microscope by someone familiar with changes due to Celiac Disease.  

The amount of gluten eaten prior to blood tests can affect the results.  Were you eating 6 -10 grams of gluten prior to testing?  Sometimes people cut back on gluten before testing because of their uncomfortable symptoms, and get equivocal results.

It can be frustrating trying to get a diagnosis.  But, do keep trying so you won't be stuck in that limbo land of wondering.  

I was diagnosed by genetic test and improvement on a gluten free diet.  I had diabetes, anemia and Thiamine deficiency, all of which affect anti gluten antibody production, and was seronegative.  You do have positive antibodies.  Ask your doctor for a genetic test.  Be strong.  It is a bumpy road to diagnosis, but we're here to cheer you on.  Best wishes! 

to be honest, i don't think i was eating the recommended amount of gluten before testing, some people say i need to eat at least 3 pieces of bread per day, but i def did not eat that much EVERY day, some days i may have not even eaten gluten i think. but then there would be days where i ate big bowls of pasta so i thought that maybe would be enough gluten to show positive on the test. but then i also went through a stage where my therapist told me to just stop eating gluten if it's making me feel bad because i was waiting for ages since i wanted to get my biopsy done through the public system. So i ended up not eating gluten for about a week, but then after that week I got a call from the centre they ended up shortlisting me and marking me as important. so they said in 3 weeks time i could get my biopsy done. So then i continued to eat gluten until then, but now I'm doubting that the one week i didn't eat any could have messed with my biopsy results

Hi everyone. I need help please Last year I got a blood test because I felt like I was super fatigued all the time. My blood test results had shown low iron and an indication of celiac disease as I had a score of 42.9 CU H for IgA, which is shown on this paper as a strong positive. They put me on a waitlist to get a biopsy/endoscopy done, which I finally ended up getting after a few months through the public system. The endoscopy apparently showed “suspicious inflammation” on the cameras, but I still had to wait for the biopsy. waited 3 weeks for my results, and the biopsy had shown no damaging on my intestine.

So that leaves me now, very distraught and conflicted on what to do. The gastroenterologist said my blood test alone was not enough to diagnose me, and that to “officially” diagnose me, they would need to perform another biopsy, which means I would need to eat gluten again for another 6 weeks. He however did tell me he still thinks there is a strong likelihood that i would have it, and that it is up to me on whether i want to go through 6 weeks of eating gluten again. 

Since I had the biopsy/endoscopy performed, I stopped eating gluten… and it’s been about a month and a half now. I honestly was so happy that I had a cure for all of my struggles, I’m feeling wayyyy less tired, I’m feeling more emotionally stable and my bowel movements are much better. But after hearing that I might not even have it, I’m now not sure what to do… I know you guys might think I sound crazy for wanting to have celiac disease, but the only reason I was hoping to be diagnosed was because I felt like it would have been the solution to my problems, by stopping eating gluten. And now I’m second guessing myself and thinking maybe I’m making this all up in my head and it’s a placebo effect that I’m having, and that’s the reason I might be feeling much “better”.

What should I do? Has anyone else had this same situation happen to them? Should I just eat gluten again and do another biopsy to make sure? Please let me know