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Bizarre Brain Symptoms?


DontEatFrenchFries

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DontEatFrenchFries Apprentice

Hello Celiac Community,

 

I've been lurking for awhile and I'd like to ask you guys since many of you have similar experiences to me.

 

I've had celiac since I was 12 and for the past 9 years my symptoms were pretty mild and typical gastro issues with only 1 incident of pancreatitis and 1 incident of vomiting. Since I got it young, I was never that good at staying gluten free and cheated a lot.... well not anymore.

 

My symptoms have gotten super weird. I now get a red itchy rash if I eat even the smallest amount. But most recently I ate some fries (which never gave me issues as a kid) and woke up in the middle of the night screaming in pain and disoriented and talking absolute nonsense. I don't remember anything, my BF told me about it.

 

Has anyone else experienced anything like this? This is totally new and weird to me and I've been gluten free for a long time....

 

Thank you!!


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cyclinglady Grand Master

Check out the DH section of this forum. Lots of photos and suggestions which basically say, "NEVER EAT GLUTEN!" The rash can get worse with each accidental glutening. It is pretty awful.

Fries can be easily cross contaminated. I would also check out our Newbie 101 thread under our "Coping" section for a refresher course.

As far as your brain stuff, gluten definitely can damage the brain. Research is just uncovering the extent of how gluten impacts celiacs. Sounds like you had a night terror. My toddler used to get them. Freaky for those who witness them. I also used to sleep walk, but that ceased in my 30's. But I am not a doctor, so who knows what happened to you!

Welcome to the forum!

BlessedMommy Rising Star

I get neurological symptoms from gluten. So it can very definitely affect the brain! 

cahill Collaborator

Gluten can affect the brain ,,, gluten ataxia

I also have neurological symptoms when ingesting soy

DH ( Dermatitis Herpetiformis) is a skin rash that only celiacs get.

 

Welcome to the forums :) 

MomBTired Newbie

Yup and yes. My son eats the littlest bit of gluten, breaks out with DH and itches like crazy. I don't know where you live but you need to be careful about eating fries out. They share fries in the vats with gluten stuff. My son is safe here at a few restaurants for fries. Chick Fil A is safe, Red Robin and at home, most Ore Ida types are gluten free

  • 2 weeks later...
cristiana Veteran

Definitely.   Migraines visual and painful migraines - thankfully now a thing of the past.  Brief episodes of waking up with what is called hympompic hallucinations when the disease first became active ten years ago - weird, but apparently even 'normal' people get them too!  Episodes of finding it hard to find the right word for something - that still hits me every few months.  Normal brain scans.  All very odd but not when you are a celiac, bizarre brain symptoms do sometimes appear to strike!

julissa Explorer

I also get brain symptoms. dizzy, brain fog, feel stupid like i can't put 2 words together. 


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caro7 Newbie

I also have migraines aura's and am unable to read words or remember names of simple things, very scarey.  I don't get them real often since going gluten free.  If this happens again I think you should mention it to your Dr. just to be on the safe side. Also I found that I could not eat chocolate,banana's .  It could be you need to keep a food diary for a while.  Good luck

LiveLoveLaugh04 Newbie

Hi, sorry to hear about these problems. 

 

I have read that french fries that we can buy at McDonald's or other fast food joints, including frozen french fries bought at grocery stores, can contain gluten. I love fries so I make my own. 

 

Also, the rash could be caused by milk. I am not 100% sure but I feel that I get it when I drink milk and eat sweet gluten-free food. 

 

Good luck!

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
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      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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