u/H3ad1nthecl0uds

How did you get diagnosed if you didn’t have any of the classic digestive symptoms of celiac? I tested positive on the blood test but it was part a panel for allergy tests to rule out DH (which I don’t have, just get hives from my various allergies). My endoscopy was completely healthy. I’m having a hard time being gf when there are no immediate repercussions and when I’m actually trying I have no feedback if I’m actually succeeding in eating gf.

Does anyone have a similar expertise where you found out by accident? Did it get worse?

Just need some info from lived experience and some support. It’s hard as I know you all are familiar with. My friends and family and even my GI also doubt I’m celiac because there are no obvious symptoms.

I tested positive twice for the celiac blood test. I never thought I could be celiac, the test was part of a different string of allergy tests because my scratch tests couldn’t be read (no I don have the celiac skin thing). They did a repeat test to check. I went in for the endoscopy. Both my stomach and intestines were healthy and fine. I was instructed to be gluten free anyways. The appointment all happened so quickly and my family doc gave me the biopsy results, not the GI. I wasn’t explicit told I was or wasn’t celiac afterwards and was too caught up to clearly ask.

This has left me quite confused and struggling. I don’t get any digestive issues after eating gluten. I loved gluten. I ate so much gluten my entire life. I cut it out after the blood tests for 3 months and didn’t notice any changes in my life. If anything I was more depressed and anxious because of the difficulty such a drastic change was and also waiting for my endoscopy. During my gluten challenge prior to my endoscopy, I didn’t notice any detrimental effects of consuming gluten.

Going gluten free while at home is not too hard for me, just a bit more expensive and things take a bit more planning (less last minute snacks/take out). I do like cooking from scratch a lot so I’ve replaced a lot of base ingredients to be gluten free. A part I find really annoying is that I don’t know if I’ve “been glutened” or cross contamination or anything when eating out or eating a may contain etc. (I’m thankful I don’t have these symptoms but I do appreciate and generates those that do as I react similarly to certain lactose products but it’s not clear cut and simple so I don’t even really know what does and doesn’t set it off, but setting it off means 48 hours of pure dread, stomach pain and being tied to a toilet) which leads me to feel what’s even the point? Can I really develop celiac digestive issues if I’ve lived 30+ years dump trucking gluten into my mouth and it hasn’t happened yet?

I’ve tried to read a lot about non digestive symptoms to see if I notice any changes or improvements in other frequently impacted areas. And I’ve read a bunch of scientific research on this. I don’t believe consuming gluten or stopping has impacted my mood, joints, inflammation, “lactose intolerance”, allergies, anxiety, etc. just looking for some direction from other lived experience experts.

I recently came back from travelling and while on vacation I just gave up trying to be gf because it was much too difficult. I don want to hurt my body in the long run, but I also don’t want to not eat gluten if it’s not actually necessary. Even if the answer is go back to my doctor, what does that conversation look like? They didn’t seem to have much to say about it besides sending me to the specialist for the endoscopy. Even at the end of the endoscopy the specialist told me it everything looks fine and healthy, but your doctor will review the sample results once processed, but I still advise no gluten.

TLRD; positive blood, negative biopsy, no digestive symptoms, need advice from others with lived experience

Edit to add something I just remembered: I guess part of why I’m hesitant to actually believe I’m celiac and full commit to gf is because my specialist was also hesitant. He said his entire career he’s had less than 3 people of my ethnicity actually be a true celiac. Prior to my endoscopy he said he would be shocked if I was celiac. My endoscopy showed complexly fine and healthy tissue and my blood work levels have always been fine. I know it’s easy for him to just say may as well cut out gluten because it can’t hurt, but practically applied that means a lot more.

For those that were asymptomatic and ignored it, what happened and how did you get diagnosed if you didn’t have classical symptoms?