Confused by inconsistent symptoms

[ktyler44]

Warning: Very long post.

I have been gluten-free for over 2 years but I'm confused by my symptoms. First of all, my diagnosis was only made by my gene test, my symptoms, and the relief after going gluten-free. I tried to get the blood test, but the doctor I was going to at the time only did the minimal testing and not the full panel. Add in the fact that I had taken myself off gluten for a while before knowing I had to be on it for the test. They had me go back on gluten, but only for a week or two. So, my test was negative. I was on back on gluten for a while and he wanted me to just have a screening colonoscopy based on my age. Nothing to do with celiac. So I asked him to do an endoscopy and biopsy me. He did, but I found out much later that he didn't check for Celiac, only h.pylori and that was negative. He just said I had LPR. I ended up changing doctors but not right away. I was still eating gluten and having bouts of terrible stomach pain. I went to my new doctor and she ran all kinds of tests on me for gallbladder, liver, etc. I had CT scans top to bottom. Other blood work. Low vitamin D but otherwise good. She said she thought it was diverticulitis. I knew it wasn't that based on where the pain was so I took myself off gluten after more research on my own and I improved. But I wasn't always 100%. Then I would get the stomach aches again. So I finally got off all gluten. When I went back to the doctor for my yearly wellness check, I told her about the gluten issue. She asked me if I had ever been checked for celiac. Really? She offered to do it but by that time I didn't want to go back on the gluten for the test. So we did the gene test to rule it out. Since she wasn't that familiar with reading the results, I sent them to Chicago to the Celiac Foundation. A doctor there helped me understand the results and said I was at very high risk. 

Now for why I'm confused. If I eat a whole sandwich with regular bread or a bowl of regular pasta, I react. If I eat a crab Rangoon at the Chinese restaurant or take a tiny communion cracker, I don't. I can peel the breading off of a piece of fried chicken and not react. But a casserole made with just a little bit of regular buillon can set me off. Why the inconsistencies? It makes me doubt my diagnosis, but I'm scared to take the gluten challenge to get tested again.

[Jmg]

1 hour ago, ktyler44 said:

Now for why I'm confused. If I eat a whole sandwich with regular bread or a bowl of regular pasta, I react. If I eat a crab Rangoon at the Chinese restaurant or take a tiny communion cracker, I don't. I can peel the breading off of a piece of fried chicken and not react. But a casserole made with just a little bit of regular buillon can set me off. Why the inconsistencies? It makes me doubt my diagnosis, but I'm scared to take the gluten challenge to get tested again.

Hi

There's lots of examples from here of people reacting differently to gluten in its different forms. Sometimes this is a different reaction to a particular food or perhaps gluten from barley as opposed to wheat. Maybe the cracker has a lower gluten ppm than the sandwich (which will be enormous). 

However leaving aside the odd ways in which people can react to different gluten foods I think you're currently in a zone of uncertainty and need to make a decision. Are you going to:

• pursue a celiac diagnosis, In which case you need to do the challenge.
• Are you going to not do a gluten challenge but assume, based on the data that you do have, gene test, positive response to the gluten free diet, that you're either celiac or non celiac gluten sensitive, in which case you need to properly follow the gluten free diet. Not pick and choose, not peel bread off fried chicken etc but live as if you had that celiac diagnosis. 
• Ignore all of this and eat what you like depending on whether or not you discern a reaction to it

I think one or two are rational actions.  Option 3 may or may not be ok for you,the jury is still out on ncgs long term consequences, but to me it's very risky, you could be an undiagnosed celiac and therefore risking developing further auto immune diseases or other serious consequences. Or it could turn out that NCGS also has nasty consequences if the diet isn't properly observed. 

Just my view! Good luck whatever you decide

Matt