Jump to content
  • 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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,470
    • Most Online (within 30 mins)
      7,748

    Elkay008
    Newest Member
    Elkay008
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.