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

Ruling Out Other Health Problems

Zizzlebreath

Recommended Posts

Zizzlebreath Newbie
Zizzlebreath
Posted

What an excellent tool this forum is. I'm so happy to have come across it!

 

I've been having problems with gluten and I am just trying to rule out other health problems. Maybe someone can help?

 

When I eat even trace amounts of gluten, I get these attacks. Waves of heat and panic washing over me, nausea but never vomiting, have to lay down immediately, sometimes can't talk, my mind goes elsewhere and I confuse frighting daydreams with reality. This all happens for what I assume to be between 30 seconds and 2 minutes and then nothing for a long period of time, from 1 to 3 hours. Than it happens again. Always the same symptoms. Last night it happened 4 or 5 times (my memory is not always good when in the midst of it). For a few days after, I'm out of it, sleepy, unable to concentrate, and have this nervous feeling in my arms and chest.

 

Does this sound like anything anyone else has experienced? I've heard lots about panic attacks and gluten but this feels different because my mind is calm and my heart rate is regular.

 

It's also hard to know because I seem to react to such trace amounts that I can't always tell what the cause is. I'm fairly new to this gluten thing and have still been cooking with prepared products and eating in restaurants. Working to cut that stuff out.

 

Thanks! Any advice would be appreciated.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like you have neuro impact from gluten. That is not unusual. Your body is clearly telling you to avoid even trace amounts. Are you diagnosed? If you aren't and you need an official diagnosis for some reason make sure you do your challenge with a doctors supervision. If you think this may be something other than a gluten reaction you may want to consult a neurologist.

GFinDC Veteran
GFinDC
Posted

Epilepsy?

EmiPark210 Contributor
EmiPark210
Posted

My psych symptoms never quite came in waves like that, but I barely remember the three weeks where I had to do my gluten challenge for my biopsy. Now that I'm gluten free, my head is a lot clearer and I feel like my ADD has gone away for the most part. 

 

If you want to get testing done for Celiac, be sure to do it before going gluten free. Just to put that out there. 

Archived

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

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


  • Member Statistics

    • Total Members
      128,390
    • Most Online (within 30 mins)
      7,748
    Ozz lock
    Newest Member
    Ozz lock
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
×
×
  • Create New...