Feeling frustrated after normal biopsy

[TanyaB]

My journey started over 11 years ago. I know this because I recently went to set up an account here and discovered I had set one up 11 years ago, when I first suspected celiac.  Also of note, it began in the US and continued in the UK, so I’ve experienced both countries inability to figure out what is wrong with me.  
So, 11 years ago I had major stomach pain, gas, bloating, nerve pain in hands and feet (clear MRI), anxiety, depression, migraines, and this weird gnawing pain in my stomach. PCP said IBS and sent me on my merry way. After chatting with friends, and at their suggestion, I gave up gluten and dairy (actually did a complete elimination diet) with fantastic effects. After I month I reintroduced and was in agony so went back to the PCP. She thought I might be celiac so sent me for full allergy testing and a celiac test. No idea which. This was I’m 2014/2015.  It came back negative. But I’d been eating gluten for three days at that point and had not been told I needed to be eating gluten for the test.  Was told it was IBS. Kept eating gluten.  
2018 - by now the gnawing pain was constant.  Figured it might be an ulcer.  Other “IBS” pain and nerve pain. Was finally referred to gastroenterologist who did an endoscopy and biopsies and found chronic gastritis and H.Pylori but no evidence of celiac.  Had a bucketload of antibiotics and the H.Pylori went away (confirmed by breath test).  Alas the pain didn’t.  Figured I didn’t have celiac but the gastritis remained despite clearing up the infection.  Gave up gluten anyway because I felt better off it. 

2019 / 2020 - moved to UK, grandmother died, Covid hit. With all this stress I started eating all the gluten  like constantly  everything I missed.  Stomach hurt, but of course it did - I was eating like crap.  Not just gluten, just bad food generally   

2023 demanded h.pylori test because I’m convinced if I had it before I might have it again and maybe that’s why I’m in more pain than ever. Fecal test, came back negative.  put on PPIs

2024 - went to the dr because of severe gas pains. They were so bad nothing helped and they were keeping me away at night.  All my previous symptoms are worse than ever and now had stabbing ovary pain. I thought maybe now it’s all due to perimenopause.  Dr doesn’t even examine me.  Just tells me it’s IBS and tells me we will run blood test to rule out other things, just to be safe. Well, my IgA-tTG came back positive (67 0-20 is normal). They ran an EMA test and that too was positive. I finally felt I was getting somewhere. I went to the dr and she told me to quit eating gluten. I said I wanted an endoscopy before I stop eating gluten because that’s what the medical guidelines recommend. She wasn’t too happy about it but referred me to get an endoscopy.  I had one and the took 5 samples from the duodenum (4xD2 and 1 x D1 - whatever that means). Well, results are in and my biopsy was normal. 
I am just at a loss now.  I felt so happy to finally have an answer, but now am frustrated.  I know I feel better gluten free and I tend to continue that way, but to have the positive blood tests then receive a negative biopsy (I was eating fully gluten prior to this for years) has just left me feeling …. I don’t know.  Lost!  
Thanks for reading this.  
 

 

[Scott Adams]

No need for you to be at a loss, what you've described here is classic celiac disease--minus the biopsy results. I believe that your blood test results, combined with you getting better whenever you eliminate gluten, should be enough for you to indicate to you that you need to go gluten-free.

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. So if you prefer to call yourself gluten sensitive, it still requires a gluten-free diet to avoid symptoms.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.