How to do know if you're doing it right?

[RDLiberty]

In this process of learning of my celiac, I'm struggling to know what to think in many cases.

I have the silent type celiac disease, so no known symptoms to go by. How do I know if I'm truly gluten free? How do I know if ingredients that are accepted as being safe for gluten free diets, actually aren't safe for me? Is routine blood testing my only option to know how good I'm being or not?

I'm scared that I'm thinking I'm doing the right thing, but I'm still going to have issues and not know it. Can I still be damaging my small intestine, even if I feel okay? The risk of cancers and other issues really scares me because I've already had thyroid cancer and I have diabetes and I'm terrified I'm going to die young because I don't have any way of knowing what diets actually work and don't work for me, and the idea of having to wait around for routine blood tests twice a year just makes me more anxious.

I realize I'm basically asking for a crystal ball, but how do you deal with the unknowns without totally losing your mind when you're silent symptom wise and have no real guide?

[RMJ]

I am also a fairly silent celiac. I’ve just had to go by the blood tests.  

After going gluten free I did discover that I had one symptom - nausea (that my doctor discounted). However it isn’t a matter of eat gluten and get immediate nausea.  After enjoying a time relatively nausea-free I started to feel nauseated more often when I started baking with flours that weren’t certified gluten free.

Most biological processes have a “dose-response” effect.  The higher the dose (gluten) the more the response (damage to small intestine).  So for most people with celiac disease, as long as you’re significantly decreasing the amount of gluten you eat, the amount of damage to your small intestine should be decreasing.

[RDLiberty]

40 minutes ago, RMJ said:

I am also a fairly silent celiac. I’ve just had to go by the blood tests.  

After going gluten free I did discover that I had one symptom - nausea (that my doctor discounted). However it isn’t a matter of eat gluten and get immediate nausea.  After enjoying a time relatively nausea-free I started to feel nauseated more often when I started baking with flours that weren’t certified gluten free.

Most biological processes have a “dose-response” effect.  The higher the dose (gluten) the more the response (damage to small intestine).  So for most people with celiac disease, as long as you’re significantly decreasing the amount of gluten you eat, the amount of damage to your small intestine should be decreasing.

Thank you for that. That makes me feel better. It's so hard to find articles that are clear on such things.

I haven't been able to find this anywhere, but what happens if you also have issues with corn, rice, sorghum, etc? Does it have the same affect as what gluten does to your small intestine, or is that not an issue as long as you don't feel any physically negative effects from it. I started panicking when I saw articles stating that gluten free isn't good enough and corn and rice, etc, is just as dangerous. I know that most celiacs don't have any issue with corn or rice, etc, so I just wondered if, for the one's who do, the damage is the same as ingesting wheat, rye, or barely gluten.

I quit eating gluten within days of getting the anti-body test results back. At this point I'm not knowingly eating any gluten, but I haven't yet decontaminated my kitchen yet. I need to replace some things and work on setting up separate areas for my gluten free foods.

I'm just trying to gather as much info as possible, especially since I'm planning on going to a GI doctor soon and I want to have all my questions lined up in a decent manner.