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

Different Symptoms When Glutened


AMom2010

Recommended Posts

AMom2010 Explorer

It seems like when I think I'm glutened (I haven't purposefully eaten gluten since giving it up 7/15/11) I get different symptoms. Sometimes I am so constipated and bloated I think I am going to pop, sometimes I get D, sometimes I get the return of joint pain in my wrists, sometimes my face breaks out with acne and my armpits itch like crazy, and sometimes I get the pins and needles sensations in my legs and feet.

I went out to dinner Sunday (ordered from a supposed gluten-free menu) and woke up at 4 am with such awful bloating. I went to bathroom, got nauseous and actually fainted (no lie!) while sitting on the toilet trying to have a BM. Talk about embarrassing :rolleyes: The rest of the day I had D.

Last night I went out to dinner again (diff restaurant, ordered from a gluten-free menu) and by the time I got home my feet were tingling... Today I have D.

I have finally made the committment to myself to no longer eat out, sigh. I have predominately neurological symptoms and brain lesions, and its super scary to think about what gluten *might* be doing to my brain. I am however starting to doubt myself that gluten is even the problem since my celiac bloodwork was negative.

Is it possible to get those neuro issues immediately after eating gluten? I thought those were more likely due to nutrient defs. I am so confused!!


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

Oh goodness, I too doubted it, I know what you are saying about the lab work. You got sick from something. Was it gluten or could it have been dairy? Most of my issues with glutens are also neuro, it is the dairy that gets my gut going shortly after eating it. I personally get my first signs of gluten about 24 hours after it was eaten and the first thing I notice is I am dizzy, then comes the headache, mental fog, speach issues, and I am told by family I make no sense.

kwylee Apprentice

My symptoms are almost all neuro but things didn't clear up entirely until I removed dairy and soy from my diet. It's been about 15 months of being strictly gluten-free/DF/SF and I did a mozzarella cheese challenge for the first time just last weekend and still got a little dizzy within 10 minutes - although not as bad as before. I have no plans to reintroduce soy. Anyway, still no intestinal trouble at all from that challenge but gluten/dairy/soy seem to mean different symptoms to different people. For me, the neuro thing was just as strong for gluten as for dairy (casein, in my case).

AMom2010 Explorer

Thank you both very much for the replies. I really hope I don't have to give up dairy, but may try it. I think for now I am going to be very strict with the gluten and not eat anything processed or anything I haven't prepared myself. Hopefully I can keep my symptoms at bay by doing that and will be better able to tell how I feel. If not, I may have to consider dairy or soy...

An interesting think happened yesterday. It seems that tingling foot I had Thursday night was a precursor to the awful, can't walk pain I used to get all the time on the bottom of my right foot. It's baaaaack! It's been a while since I've had that extreme pain, hoping it goes away soon! I had previously been diagnosed with tarsal tunnel (sp?).

Can anyone else weigh-in about the onset of neuro symptoms? Can they happen that quickly after consuming a small amount of gluten?

pricklypear1971 Community Regular

Yes, it can be fast. It can vary from day to day. It can last for weeks, off and on.

And it can change. I never noticed bloating. Now I bloat. I have no idea from what... Salicylates bother me - the bad ones like preservatives, scents. That can be bad and fast.

eatmeat4good Enthusiast

I, too, get neuro issues. Sometimes they come on fast, like dizzy to the point of wanting to fall down and having to think about each step I take. I get spacey and cannot think at all. It comes in waves along with depression and anxiety. Massive migraine headache for 2 or 3 days. I get anywhere from immediate onset to 24 hour delayed onset. After a glutening it takes me about 3 weeks to feel normal again. My sense of self is just gone..or distorted. I have no other way to describe it.

I tried eating in gluten free restaurants, but decided that playing Russian Roulette with the consequence being 3 weeks of illness, headaches, and depression is absolutely not worth it. After it happens a few times...eating out is no longer a treat...it is like torture...you know it's gonna happen, you just don't know when. At least if I make all my food myself I'm in control of it at least at home. I love not eating in restaurants now. It means I'm safe.

I had to give up dairy...and really, really did not want to.

I also have DH. So added to those neuro issues...about 6 weeks of painful/itching blistery sores.

I don't know about the antibodies or why the reactions happen so severely or so fast, but I do know that gluten effects my brain very badly. It just ain't right...but that's the way it is.

I hope you figure it out soon.

Hope it's not dairy for you too.

I gave up dairy because of the way casein can effect the brain as badly as gluten. I have got to eliminate all possible ways of food interfering with my mind. It helped a lot. I hope to be able to add it back one day, but last week I tried ice cream and got a severe headache exactly 3 hours after eating it. Just like the last time I tested it.

AVR1962 Collaborator

Thank you both very much for the replies. I really hope I don't have to give up dairy, but may try it. I think for now I am going to be very strict with the gluten and not eat anything processed or anything I haven't prepared myself. Hopefully I can keep my symptoms at bay by doing that and will be better able to tell how I feel. If not, I may have to consider dairy or soy...

An interesting think happened yesterday. It seems that tingling foot I had Thursday night was a precursor to the awful, can't walk pain I used to get all the time on the bottom of my right foot. It's baaaaack! It's been a while since I've had that extreme pain, hoping it goes away soon! I had previously been diagnosed with tarsal tunnel (sp?).

Can anyone else weigh-in about the onset of neuro symptoms? Can they happen that quickly after consuming a small amount of gluten?

How long have you been gluten-free? You only get nuero symptoms after gluten? I am my worst with dizziness after gluten (24 hours approx after consuming) but I live with on-going nuro issues. Sounds like you could have some vitamin deficencies going, espcially B. I take WSN Nerve Support Formula daily which contains thiamine- 103mg, Methyl B12- 1000 mg, B2- 2 mg, B6- 2 mg, folic acid- 100 mcg, B3- 250 IU which does help the neuropathy issues.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,789
    • Most Online (within 30 mins)
      7,748

    Lynn Darnell
    Newest Member
    Lynn Darnell
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • thejayland10
      That is a very good point I do not know if they truly ever went down. With my nutrient levels all being good, CBC, metabolic panel I assumed everything was fine over the years. Now Im worried this is refractory celiac or something else 
    • RMJ
      I don’t know how common it is, but it happens.  Total IgA going up is not necessarily celiac related.  The body can make IgA antibodies against all sort of things.   But if I understand correctly that until recently you haven’t had a celiac blood test since diagnosis, how do you know that your recent blood tests are a mild rise, vs never going down to the normal range? That also can happen, although not too common. Some people with celiac disease do react even to purity protocol certified gluten free oats. Removing oats from your diet for a few months and retesting is probably a good idea.
    • thejayland10
      interesting I did not know that was that common or could take that long.  When I was diagnosed 15 yrs ago I was told just follow gluten-free diet and follow up with primary care doctor (who never checked celiac panel again). I felt way better and all the major symptoms went away. It wasn't until recently at 25 (14 yrs after diagnosis) that I thought to follow up with a gastro doctor who then did a celiac panel and noted those minor elevations 3 months ago then I got them checked again by another doctor the other week and were showing roughly the same thing.  I am very strict with what I eat and dieitican was maybe thinking it could be oat flour. I do eat a fair amount of processed food but I will not touch anything unless it is certified gluten free.  Do you see this pretty commonly with others? Having mild rises in TTG IGA and IGA who have been on gluten-free diet for years? 
    • RMJ
      Do you have any other results from either of the two labs where you’ve been tested recently?  If so, are the newest results from that lab elevated over previous results? It took me 5 years to get all of my antibodies into the normal range. Then 3 years later one went up into the positive range.  I realized that I had started baking with a different brand of gluten free flour.  When I stopped using that flour the level went back to normal.  Has something changed in your diet, environment, activities, medications or other areas where you could possibly be exposed to gluten? 
    • thejayland10
      Thank you for the clarifcation, how can I get to the bottom of this as to why they may be elevated even on a super strict gluten-free diet? 
×
×
  • Create New...