Months of diarrhea - Testing question

[MichelleGrant]

I've been gluten intolerant for as long as I can remember. I get terrible cramps and fatigue/ feel like I've got the flu.

In the last 3 months I've felt increasingly unwell. I started to get very bad diarrhea after eating gluten, which would take 4-5 days to recover from with a very bland gluten-free diet.

It escalated 4 weeks ago after having a small piece of bread. The diarrhea got so bad I went to the doctor thinking I had gastro. It was just before a trip overseas so he put me on antibiotics. The stool test for virus/ infection was negative.

While overseas I had a terrible episode. I had some wheat (I know - I was missing western food), and that evening had chills for two hours. I had a bad episode of diarrhea. The next morning was the worst. I was shaking, felt like I was going to be sick, and had the worst diarrhea of my life. It was basically water, and I couldn't leave the bathroom for 2 hours. We had to change our train tickets and get a late checkout.

Awful. I'll never eat gluten again. That was 1.5 weeks ago. I've eaten gluten-free since then, and my body is still working through things. Most foods are now causing irritation. I'm on a very bland gluten-free diet which seems to be working.

I saw my Dr today. I was hoping she would say its my gallbladder/ pancreas. She said its hallmark celiac disease symptoms. She wants me to have a blood test tomorrow, and if thats negative go to the gastroenterologist. She will also test liver/ kidney etc.

I haven't had any gluten for 1 week, with the exception of some soy sauce. My dr said my stomach is so inflamed that even though I haven't had gluten, if its celiac disease it might show up on the blood test.

Separately, I had a test for celiac disease 3.5 years ago (colonoscopy/ endoscopy) which came back negative. To be fair, I didn't eat enough gluten beforehand.

Please let me know your thoughts about the blood test. I'm wondering if I should gluten up and then do it, or just do it tomorrow since I've had issues with diarrhea all week, and if its negative have more tests/ gluten up.

[MichelleGrant]

ps for the most part I don't eat much gluten day to day. In the past it was like a bucket for me. I could eat a little and be ok. But I had to be careful. If I ate too much I'd get tired and lethargic.

Lately any gluten makes me very very sick. At first I didn't understand what was going on, and now I'm onto it. I'll never eat gluten again - unless I have to do the 6 week challenge.

[Scott Adams]

Your experience sounds incredibly challenging, and it’s clear that your body is reacting severely to gluten, whether it’s due to celiac disease or a worsening gluten intolerance. Given your recent symptoms—especially the intense diarrhea, chills, and systemic inflammation—it does align with celiac disease, particularly since your doctor noted these as hallmark signs. The fact that even trace amounts (like soy sauce) are now triggering such extreme reactions suggests your sensitivity has escalated significantly.

Since you’ve been gluten-free for a week (aside from the soy sauce), your doctor is right that the blood test might still detect antibodies if your gut is highly inflamed. However, for the most accurate results, celiac testing typically requires consistent gluten consumption (the "6-week challenge"), as antibodies diminish when gluten is avoided. Given how sick you’ve been, though, reintroducing gluten now could be unbearable. If the blood test is negative, you might need to discuss with the gastroenterologist whether further testing (like another endoscopy) is worth the toll of a gluten challenge.

Your prior negative test 3.5 years ago may indeed have been a false negative due to insufficient gluten intake, so this time, proper testing is crucial for a definitive answer. For now, proceed with the blood test tomorrow—if positive, it could spare you further gluten exposure. If negative, you’ll need to weigh the risks of a controlled gluten challenge versus accepting a strict gluten-free lifestyle based on symptoms alone. Either way, your resolve to avoid gluten is wise given the severity of your reactions. Prioritize healing with your bland diet and follow up closely with your doctor. 

[MichelleGrant]

Thanks for your thoughtful response. I got the blood test today, which was a full celiac serology. I'm not going to hold my breath over the blood test showing anything up, but you never know. I get the results Friday next week.

For the next week I'm going to enjoy feeling well as I eat gluten free. My energy is still lagging a bit, but my gut is feeling so much better. I live in Australia where its very easy to eat gluten free.

I'm absolutely dreading potentially doing the 6-week gluten challenge and the damage it will do to my insides. Is it worth it? I'm not sure. But long term I'll be strict with cross-contamination/ soy sauce/ tiny amounts if I know its actually celiac disease and not a bad intolerance.

[Scott Adams]

Let us know how the test results turn out. 

This article, and the comments below it, may be helpful:

 

 

[MichelleGrant]

I received my blood test results for celiac serology (attached file). Results were negative.

Only thing not great is CRP at 5mg/L (indicating inflammation), High ferritin at 165 (also indicating inflammation).

My doctor said to keep following a strict gluten-free diet and that my tolerance to gluten seems to have gotten worse, and created inflammation with all the diarrhea/ stomach issues. She said to also stay away from my other triggers which are alcohol, soy, legumes and some vegetables (eg. cabbage / cauliflower / brussel sprouts). I generally follow a low fodmap diet.

The gluten-free diet is going well - things are returning to normal.

[Scott Adams]

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.