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

Atypical Symptoms -- Not Sure If It's celiac disease


shadowfax

Recommended Posts

shadowfax Newbie

Hi,

A few years back, I was diagnosed with Leaky Gut syndrome and food allergies (including wheat and gluten) after a bout of food poisoning. After a strict diet for a few months, the brain fog lifted and I introduced foods back into my diet as instructed by my naturopath. I'm MUCH better now, but the past year or so I've had odd symptoms that I'm not sure relate to celiac disease. Here's a description of a really bad event for me:

I start to feel reeeeally tired, then sort of heavy (as if just stepping out of a pool), then I get a sick, hot feeling all over, my heart starts to sky-rocket and I start to sweat. I endure this for about 15 minutes, and then I have a bowel movement. This may sound odd, but it's almost like my body wants to throw up, but on the other end...but it's not diarrhea. It sometimes feel like my intestines just stop working and this is my body's way of trying to jump start it again. It's a truly horrible and terrifying experience...I feel like I'm dying or something.

I've been avoiding wheat and gluten for the most part for the past 2.5 weeks and so far so good. If it stays calm for the next month I feel it must be due to the wheat/gluten. But it's frustrating because I don't seem to have typical, cut and dry celiac disease symptoms. Can anyone relate?

Also, how reliable are the blood tests for celiac disease? I don't think I can handle or afford a biopsy.

Thanks for listening!


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



Celiac.com Sponsor (A8-M):



Guhlia Rising Star

This is EXACTLY what happens to me if I do a gluten challenge. I thought I was crazy, but you've really hit the nail on the head. I'm glad I'm not alone, but I'm so sorry that you have to go through this. On my last gluten challenge, when I was supposed to get biopsied, it took me about 5 weeks of eating gluten to reach this point. I'm one of those who gets sick over just a crumb, but if I eat a whole slice of pizza I get no reaction, my body just kind of shuts down. Ugh... Anyway, yes, that could definitely be Celiac rearing its ugly head.

Viola 1 Rookie

The blood tests are pretty reliable if you have been eating gluten before the tests. If you have been gluten free they would likely give you a false negative.

Let us know how things go, and welcome to the forum!

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,819
    • Most Online (within 30 mins)
      7,748

    Charlette Jillie-Martinez
    Newest Member
    Charlette Jillie-Martinez
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.