Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Bizarre Brain Symptoms?

DontEatFrenchFries

Recommended Posts

DontEatFrenchFries Apprentice
DontEatFrenchFries
Posted

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

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
BlessedMommy
Posted

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

cahill Collaborator
cahill
Posted

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
MomBTired
Posted

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
cristiana
Posted

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
julissa
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


caro7 Newbie
caro7
Posted

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
LiveLoveLaugh04
Posted

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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Jamie0230
    Newest Member
    Jamie0230
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...