Positive Every Test Just Waiting On Biopsy

[faithforlife]

This is kind of surreal but so far I've been positive every test for antibodies and genetics and now 6 months into the strict gluten-free diet I finally agreed to go through endo and biopsy because I have a hard time believing I'm celiac. And im curious what things look like inside me. I had no symptoms I just got tested because my son was positive in his bloodwork ( he was very symptomatic). So then my endo had visible obvious scalloping of duodenum. And gastritis. I'm waiting on my biopsy results. Are there any questions I should ask? I'm also afraid there's gluten getting into my diet by cc. My house is 100% gluten-free so it would be in my groceries that are supposedly gluten-free. I'm very careful what I buy. Or maybe my intestines are healing but just not healed.

[emaegf]

First off you said you were eating gluten free for 6 months before your biopsies were taken. Don't be surprised if they come out negative. You have to continue to eat gluten containing foods until after the biopsy is done or you can get a false negative. I'm surprised your doctor did them wiuth you being already gluten free for so long. If they do come out positive then you are getting gluten from somewhere and you will have to go over everything you have been eating and all the foods you are bringing into the house. If your home is truly 100% gluten free you may also be reacting to another food. It's not uncommen for another problem food to show up once you get gluten out of your diet.

[mushroom]

Some of us do take longer to heal than others; they say for adults that healing can take as long as two or three years. Wait for the biopsy report and see what the pathologist has to say and then you can ask the GI if this is a normal healing rate or if he thinks you are getting gluten in your diet, or if you react to very small amounts of gluten, i.e., super sensitive. For you to heal it may be necessary to go to a whole foods diet, with no processed gluten free foods - i.e., just meat, fish, veggies, fruits, nuts, perhaps some rice. But don't jump the gun here, just wait for the process to unfold. I am sure your GI will be all over it if he feels that you are not being strict enough on the diet. I would take a list with you of what you eat (including the processed foods by brand name/ He may or may not be celiac savvy but it doesn't hurt to give him the benefit of the doubt at this poinr.

Let us know what he has to say and get a copy of your pathology report and post it here for us to see and comment on.

[faithforlife]

Yes we went through with it because I developed gastritis probably stress related and so I grew curious just how things were looking. Then the GI said the info would be informative as to how my diet is going. (there are a few things I eat where I have not called the company but they are labeled gluten-free). And I eat the gluten-free Bobs Redmill oats on pccasion but I've heard celiacs can still react to those. My doc says he's never seen a celiac as healthy as me- that usually the disease is not found until more health problems surface. But my parents have-had terrible autoimmune problems and we never heard of celiac. My area does not have many celiacs- I live on border of Mexico- so I'm not sure how much this doc knows. Most of what I learn I read myself. My sons pedi GI though has been nothing short of amazing. In my first 5 minutes of meeting him ( after years of my son running to toilet) he told me everything to expect in the next few months- that he would be celiac and that the whole Fam should be tested and eat gluten-free!

[faithforlife]

Clarification-how much this doc knows ABOUT CELIAC. He is very knowledgable and the most well known GI here. He's also very personable. He did want to do endo months ago and I was too scared of procedure and of being out asleep and of having the information and even of it being on my medical record. Ugh. People do say to try and avoid an official diagnosis for insurance purposes my insurance already knew we were getting tested. I'll have to ride that one out. And doc says just never have my insurance lapse.