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

Glutened Reaction?


tpchan85

Recommended Posts

tpchan85 Rookie

I'm possible celiac and am waiting to see a gastro to have further testing. I've been gluten free for about 2 months and wondering if this is a typical reaction to glutening.

I ate gluten food for 1 day so a fair amount of gluten and was fine the same day, the next morning I woke up feeling really far away, lightheaded and anxious, really horrible. The next morning I had a spell of heart palpitations. I felt better by about 3 days later. Then 2 nights ago I had a beer, that night I had to urinate way more than usual but woke up fine the next day aside from a little diarrhea, until I lay down to go to bed - had a string of palpitations but fell asleep anyway. Today I woke up with a tingling in my right arm, lightheadedness and extreme anxiety. Feel like adrenaline is surging through my body despite the fact I'm totally relaxed.

 

Are these typical symptoms of a celiac reaction?

 

Also wondering why after going gluten free my IBS symptoms went away for about 2 weeks then returned with a vengeance. Is this a sign of trace glutening or could it be a reaction to something else?


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



Celiac.com Sponsor (A8-M):



CajunChic Explorer

Most importantly, you need to be eating gluten before being tested so the tests will be accurate. You have two months, so eat up plenty glutenous foods! (Have a donut for me!!)

Those reactions do sound like an intolerance whether it be celiac or NCGS. I have a 1-2 day delay in reactions when I'm glutened. The third day is always my worst day.

I, too, felt my ibs symptoms returned and learned I had a lactose intolerance. I found I was also sensitive to nightshades, beans, and corn. So it's always something new.

Btw, you said possible celiac. What tests were run?

BlessedMommy Rising Star

Yes, you do need to eat gluten before being tested, but keep in mind that if you've been gluten free for awhile, your symptoms when reintroducing it may be worse. You should not go overboard and eat gluten at breakfast, lunch, and dinner. One sandwich a day for the 2-3 month period is enough.

 

I was unable to complete my gluten challenge due to an extremely severe reaction on day 10 of it. In hindsight, I could have improved my chances of completing it successfully if I stuck to 1-2 slices of bread a day and ate all the rest of my food gluten free. 

tpchan85 Rookie

Most importantly, you need to be eating gluten before being tested so the tests will be accurate. You have two months, so eat up plenty glutenous foods! (Have a donut for me!!)

Those reactions do sound like an intolerance whether it be celiac or NCGS. I have a 1-2 day delay in reactions when I'm glutened. The third day is always my worst day.

I, too, felt my ibs symptoms returned and learned I had a lactose intolerance. I found I was also sensitive to nightshades, beans, and corn. So it's always something new.

Btw, you said possible celiac. What tests were run?

 

ttg IgA blood test, found to be negative. Had an endoscopy due to esophagitis, surgeon that performed the endoscopy did a gastric biopsy and found what he said was "no signs of celiac" but admitted the biopsy was taken too high (in the stomach) for it to be conclusive. Said in his opinion I'm not celiac but he would send me to a gastroenterologist if I really wanted more tests but a second endoscopy was out of the question. Currently waiting to be referred but eating gluten free. My brother is diagnosed celiac and I've had bowel issues since the age of 12. Am also borderline B12 / folate / vitamin D deficient but I'm stonewalled by docs as I'm sitting on the edge of normal range.

Tomislav Newbie

I think that you should visit gastroenterologist, and about the gluten free diet... Gluten manifests differently at different persons, some of us that have Celiac might eat gluten food for a month and don't manifest a single symptom (im strictly talking about my self), and others can be on a gluten free diet for like 1 year, than eat one slice of bread that contains gluten and the next morning they can have like hundreds of symptoms..So in my opinion, I suggest that you should visit a gastroenterologist, and perhaps you might have to do one more endoscopy but after that I think that the GI is going to put you on a gluten challenge (Which most of them does), I read that your brother is diagnosed with celiac, but that doesn't mean anything, because I'm diagnosed with celiac and my whole family including my brother doesn't have a single sign of celiac.Just visit the GI ,and if you are able and if you want to feel free to contact me about his opinion and what he told you. :)

GF Lover Rising Star

If your brother has Celiac, I'm assuming he carries one of the two genes that would have been passed down from mother/father.  Obviously these genes can also be passed to you.  Chances are 1 in 22 if you have a sibling with Celiac.

 

Open Original Shared Link

 

Colleen

IrishHeart Veteran

ttg IgA blood test, found to be negative. Had an endoscopy due to esophagitis, surgeon that performed the endoscopy did a gastric biopsy and found what he said was "no signs of celiac" but admitted the biopsy was taken too high (in the stomach) for it to be conclusive. Said in his opinion I'm not celiac but he would send me to a gastroenterologist if I really wanted more tests but a second endoscopy was out of the question. Currently waiting to be referred but eating gluten free. My brother is diagnosed celiac and I've had bowel issues since the age of 12. Am also borderline B12 / folate / vitamin D deficient but I'm stonewalled by docs as I'm sitting on the edge of normal range.

 

First of all, a biopsy for celiac is done in the small intestine, not the stomach, so this test is not really valid.

 

If you are gluten free, then reintroduce gluten and have the symptoms you describe here:

I woke up feeling really far away, lightheaded and anxious, really horrible. The next morning I had a spell of heart palpitations. I felt better by about 3 days later. Then 2 nights ago I had a beer, that night I had to urinate way more than usual but woke up fine the next day aside from a little diarrhea, until I lay down to go to bed - had a string of palpitations but fell asleep anyway. Today I woke up with a tingling in my right arm, lightheadedness and extreme anxiety. Feel like adrenaline is surging through my body despite the fact I'm totally relaxed.

 

then, you certainly have a gluten intolerance of some kind.

 

Have the genetic test done. Even it that is negative for celiac, you sound as if you have NCGS, in which case, it's up to you to determine

if being G F is the best thing for you. From what you are describing, it sure seems like it is. Why be miserable??

 

Just my opinion.


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
      129,796
    • Most Online (within 30 mins)
      7,748

    Hauser
    Newest Member
    Hauser
    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

    • Russ H
      There is a predictive model for children on this link. Depends on sex, HLA genes and number of affected close relatives.  The model only goes up to age 12 so it would be interesting to know what the lifetime risk is. https://hputter.shinyapps.io/preventcd/
    • 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? 
×
×
  • Create New...