Am I nuts?

[GlorietaKaro]

Hiya- I have been eating gluten free for several years now— but the learning curve has been steep!  I got serious about the strictness of my diet at the beginning of the COVID pandemic: I missed baking bread and thought there would be no harm in making bread in a bread machine— I was just assembling the ingredients, not actually touching it. Well, some flour puffed up in my face and I lost my voice!  At that time, I had many other scary things going on: muscle fasciculations, dropping things, missing things I was reaching for, tripping and trouble navigating around corners and doors ( I ran into them!), muscle weakness resulting in severe incontinence, issues with irregular heartbeat, and other things. I thought I had ALS.

I have since learned to avoid all traces of gluten and oats and everything has resolved, but even a trace amount of gluten will cause me to start tripping, dropping things, and have muscle spasms. The last series of micro-exposures resulted in half my face going numb, like Bell’s Palsey  

I have consulted with several doctors about this, and mostly they look at me like I’m mentally ill and treat me like a hypochondriac. 

One doctor suggested that I start eating gluten again so I could get a diagnosis, but that is a scary prospect— I do like to be able to breathe! I feel like a test run with gluten could put me in the hospital, or even kill me.

So my question is— am I crazy?  Could all of those symptoms be caused by gluten?  Is there any way to get a definitive diagnosis without eating gluten(like a scratch test or something?)?

Also, in a city full of gluten avoidant individuals (who look a lot like me) but who still occasionally eat gluten foods or cook with gluten or who can still walk into a bakery or pizza restaurant, how can I get taken seriously?

Mostly I just want to find out if I am a complete weirdo, or if there is anyone else out there who reacts like I do— 

[Scott Adams]

Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.

[trents]

Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.

[GlorietaKaro]

Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary—

Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working!

Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—

[trents]

@GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.

[GlorietaKaro]

One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—

[lalan45]

On 12/24/2025 at 5:53 AM, GlorietaKaro said:

Hiya- I have been eating gluten free for several years now— but the learning curve has been steep!  I got serious about the strictness of my diet at the beginning of the COVID pandemic: I missed baking bread and thought there would be no harm in making bread in a bread machine— I was just assembling the ingredients, not actually touching it. Well, some flour puffed up in my face and I lost my voice!  At that time, I had many other scary things going on: muscle fasciculations, dropping things, missing things I was reaching for, tripping and trouble navigating around corners and doors ( I ran into them!), muscle weakness resulting in severe incontinence, issues with irregular heartbeat, and other things. I thought I had ALS.

I have since learned to avoid all traces of gluten and oats and everything has resolved, but even a trace amount of gluten will cause me to start tripping, dropping things, and have muscle spasms. The last series of micro-exposures resulted in half my face going numb, like Bell’s Palsey  

I have consulted with several doctors about this, and mostly they look at me like I’m mentally ill and treat me like a hypochondriac. 

One doctor suggested that I start eating gluten again so I could get a diagnosis, but that is a scary prospect— I do like to be able to breathe! I feel like a test run with gluten could put me in the hospital, or even kill me.

So my question is— am I crazy?  Could all of those symptoms be caused by gluten?  Is there any way to get a definitive diagnosis without eating gluten(like a scratch test or something?)?

Also, in a city full of gluten avoidant individuals (who look a lot like me) but who still occasionally eat gluten foods or cook with gluten or who can still walk into a bakery or pizza restaurant, how can I get taken seriously?

Mostly I just want to find out if I am a complete weirdo, or if there is anyone else out there who reacts like I do— 

You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.

[GlorietaKaro]

Thank you— yes, valid and essential—

The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it. 
 

There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience. 
 

Thank you very much for your response— sometimes I just need to hear that I am not crazy—