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 For gluten-free bread and bagels, try Whole Foods, Trader Joe's, or Sprouts. Popular brands include Udi's, Glutino, and Rudi's. For lunch meat, check out Boar's Head, Applegate, or Wellshire Farms. Don't worry about making your own - it can be tough!

On 9/7/2024 at 9:53 AM, jayjays said:

Hi Celiac Forum,

I am new here, and hope this is the right place to post my question and find some orientation.

I am looking for ways to diagnose what the hell is wrong with me. I tested negative for Celiac (I think it was a tTG-IgA) but have bizarre symptoms when eating gluten.

Here is my story in a nutshell:

• throughout my 30s (now almost 40 yo), I had extreme fatigue, frequent night terrors (waking up and thinking there are people in the room), and often memory problems - all of which I put down to work stress
• this year, building up over two months, I exprienced debilitating brain fog, up until I developed continuous migraine for a few weeks, severe cognitive problems (lack of concentration, memory problems, inability to think clearly) alongside terrifying emotional problems (anxiety, panic attacks, depressive episodes, psychotic night terrors and hallucincations at night) - a truly awful time that made me doubt myself at times and felt like I am decending into madness
• all tests that were conducted came back negative (CT, MRI, blood tests, viral brain infection)
• on a side note one GP suggested to look into gluten and - while sceptical - I just went on a gluten free diet to try it out
• within days on a gluten free diet the most severe symptoms disappeared, over multiple months the migraines, cognitive and emotional problems subsided slowly
• gastro tested negative for celiac
• neurologist didn't quite know what to do with me and diagnosed "chronic migraine" - he wanted to put me on hefty migraine treatment over months, which I refused
• now when (accidentally) eating food with gluten, I consistently develop a migraine after about 4 hours, night terrors/hallucinations at night, and sometimes back to the extreme exhaustion for a day or two
• I started to read about gluten, ncgs, celiac, at the moment ncgs is my leading theory, staying off gluten seems to help

I am absolutely terrified about this recent time, in particular the emotional and psychotic symptoms, and still scared what the previous years of night terrors and extreme fatigue did to my body and brain. However, I am equally thankful to have discovered that a gluten free diet seems to help. It makes me shudder to think about how many similar cases might suffer from such symptoms - lacking a GP that points them towards trying a gluten free diet, or worse, disregaring it as a fad.

Having tested negative for coeliac disease, I am searching for other ways for diagnosis. My gastro proposed a biopsy, which requires eating gluten for two weeks. I don't want to undergo the above mentioned symptoms however. As mentioned above the neurologist doesnt quite know what to do with me.

Feeling a bit left alone, I was wondering whether others had a similar experience, or have suggestions about further tests or doctors that might be able to help (I'm based in London, UK)?

Your symptoms, especially the neurological ones, are really concerning. NCGS does seem like a possibility. Have you considered talking to your doc about a gluten challenge or exploring other potential causes? Also, keeping a food and symptom diary might help track patterns.

Going gluten-free has helped and it is good to learn that. Well done for taking the control over your health! 🙌

On the results of the test, yes, 0. 2 u/ml does look high, but that may be due to the fact that the current has been diluted. You might want to be tested for total IgA level in order to exclude selective IgA deficiency in quest of getting a clearer diagnosis. Further, before any endoscopy, perhaps it may be better to ask your doc regarding a more aggressive panel and gluten challenge to see if it is indeed gluten causing the problem.