I don't need a diagnosis to know I have a problem with it. I have been gluten free for 5 years now. I never look back. Gluten is like crack to me and it is highly addictive. I am also under the firm belief that gluten is not good for anyone. Everyone I know who has given up gluten is very happy with their choice. Gluten made me very tired too. I don't feel like I need to defend my decision to anyone!

As my doctor said, ultimately it doesn't matter if it is celiac's, allergy, or other form of intolerance, the end remedy is the same "don't eat it." My test results for celiac were inconclusive, but I'd also been eating gluten-free for a short while after doing my own elimination testing of potential problem foods. I do have a very strong family history of celiac disease though so my doctor put "celiac disease" in my medical file anyway.

Most people don't seem to have any issues when I tell them I can't eat gluten other than to ask me how they can help keep me safe. Some are generally curious as to what my diet looks like, or what problems I had before I stopped eating gluten.

The most push-back I've ever gotten was ironically from a celiac diagnosed family member who told me that since I hadn't been diagnosed via a colonscopy I don't really have celiac disease, and just don't understand that world is out to kill people that do. She's a little paranoid (with some reason) about keeping herself safe, and doesn't seem to grasp the concept that others can have issues with wheat and gluten without having them as severe as she does. Other times she's been a great resource for recipes, restaurants, and general advice so... whatever.

When eating out I usually say that I have a "wheat allergy" because at the time I went gluten-free it wasn't as common as it is now. Most waitstaff have healthy respect for food allergies though and I found framing my issues in those terms generally resulted in the appropriate care being taken.

Hi @Cindure, I think it's a blessing too. Now lots of companies put the gluten free label on their packages so it's easier to buy without having to so carefully read labels and phone the company number on the packages to ask questions.

@Zara11 I originally tested 'inconclusive' for celiac disease, but that was after being GF for a few years. I decided NOT to do a gluten challenge to get a conclusive result because it doesn't change my health insurance here, and why set myself back so far and have to re-heal again. It can take up to 3 years to heal the intestines properly even if you are eating strict celiac style but most symptom resolution comes pretty quick, thank goodness. Just keep on with doing what is healthy for YOUR body!
Do you have any issues with other foods (many do if their bodies aren't healed up enough) such as dairy, etc?
cheers!

@Zara11 I get regular updates on Celiac Disease, NCGS, and Gluten Free issues from MedScape (a health professionals' continuing ed site with the latest published peer reviewed studies) and I post them on this group under another thread name. I was a Physio Rehab Specialist, that's why I'm a member: community.myfitnesspal.com/en/discussion/10104290/medscape-medical-professionals-continuing-ed-site-celiac-disease-gluten-sensitivity-articles#latest
You might find the information helpful for you and your primary care physician.

I agree with the people who have said it is not worth going back on gluten to get the official diagnosis. I got referred to an allergist by my DR who was less than helpful, and said since I didn't get "hives" despite my previous allergy tests, I was probably fine. Obviously I wasn't fine since I was going to a DR to figure out why I was always tired, all my blood work came back showing I was super low on pretty much every nutrient despite eating a healthy diet, and I was always sick to my stomach, along with other symptoms. When she did get the blood test she finally did back she left a voicemail consisting of "yeah, you should avoid gluten" ????? I had already started eating gluten free and felt so much better, so when I found out later (from a different doctor, definitely did not go back to that one!) that I would have to go back on it to get an offical diagnosis, it just isn't worth it. My cousin has it, the more I read about the symptoms I believe my father had it, and I have the symptoms so I just assume I am. Either way, it won't change the fact that I have to eat gluten free for my health.

I am gluten free, due to autoimmune disorders. If people ask why I say due to medical conditions.