Diagnosing celiac

[Flaura001]

Hello! In July I got tested for celiac with blood tests and I was supposed to have endoscopy but I am super scared of it and I missed my first time because I had a panic attack. Then I stopped eating gluten but still had some abdominal pain on left and right side, so I went to the doctors and they tested me again. The blood test came back positive again, even though I stopped eating gluten. I was supposed to get another endoscopy today but I had another panic attack and didn’t go. I have a phobia of throwing up and I don’t wanna feel nauseous or anything. So I wonder should I just stop eating gluten, or should I try going to self pay endoscopy with complete sedation but it can be really pricey. Otherwise I would have to wait again for another date and It could take quite some time. I feel so confused right now😭

[knitty kitty]

Welcome to the forum, @Flaura001!

Have you explained your anxiety to the doctor and nurse doing the endoscopy?   They may be able to give you a medication to take at home before your appointment to relax you.  (In which case, someone should accompany you.)  In light of your anxiety, they may be able to reschedule you sooner, or put you on the list to fill in for other people's cancelled appointments.  

Having an endoscopy now can provide a baseline of how much inflammation there is in your intestines and make sure there's not other things going on.  The first endoscopy can be used to compare future endoscopies if the need arises.  

Since you have stopped eating gluten, you need to ask the gastroenterologist if you need to do a gluten challenge.  (Ten grams of gluten daily for two weeks prior to the endoscopy.)  A gluten challenge will cause more symptoms and active inflammation in the small intestine.  This is what the doctor is looking for, signs of active Celiac disease.  Once you start a gluten free diet, the inflammation goes down and the small intestine starts healing, so they might misdiagnose you.  This misdiagnosis is not a good path to take.  

I believe you have a boyfriend who works with wheat....that's probably why your antibody level is still high.  Wheat dust can go up your nose, down your throat and into your digestive system and cause continuing symptoms.  The boyfriend might need to clean up a bit before you let him in the house....

Let us know what you decide.  We're here to help and support.

[Lily54]

Hi. Does anyone else in your immediate family or extended family have celiac? My sister was diagnosed and she had a biopsy so when i tested positive i decided not to have the biopsy. You have at least a 50% chance of having celiac disease if someone in your immediate family has it. I have enough problems without having to go through the stress of endoscopy etc. Also from what i understand it can be hard to tell celiac from Crohn’s disease etc based on what it looks like etc when the tissues are all irritated. Basically they are trying to see a specific kind of damage to the intestine. 

[Scott Adams]

Can you share you blood test results? 

In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTG-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!