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

Is This Normal?


Pois

Recommended Posts

Pois Newbie

Hi Im new to all this.

Ive had the test and all came back inconclusive. The blood test had a note on it that said i could be in the 2-3% of celiacs that dont have a high level of something. Or i could just be gluten intolerant. Im going to a dietician in 3 weeks (best appointment i could get) but at the moment im going a bit stir crazy!

I put myself on gluten free this year because i was fairly sure that was the problem and i was starting to feel great! (a little tired but my stomach felt normal for once) but then last saturday all my symptoms appeared again (rash on elbow, diarrhea, crying, bloating, feeling like acid was being poured through my intestines)

Im not sure if i accidentally ingested some gluten - ive been so careful and am pretty sure that i havent, however, if i did - is it normal for my symptoms to still be playing up a week later? (I know the longer youre gluten free usually the more severe your symptoms are if you accidentally ingest it - but i was only gluten free a month.) Or would this indicate another intolerance/problem?

Would be awesome if anyone could just let me know if this is kind of normal - though i know hardly any 2 cases seem to be the same! :rolleyes:

Thanks!


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



Celiac.com Sponsor (A8-M):



Guest nini

yep it's normal! :P

francelajoie Explorer

Crying? Wow!

Was I diagnosed right? I never went through this stuff. Diareha, constipaton, and bloating is all I've ever benn through.

Man, I really feel bad for what you guys are all going through.

Pois Newbie

how about symptoms actually being worse a week later? After i posted that i ended up with really bad diarrhea :angry: and my stomach has been kind of sore all week when i eat anything

(im just worried that it could be something else after i thought i had it sorted and had accepted it)

hez Enthusiast

When I get glutened I do not feel "normal" for 3-4 weeks. I know everyone is different but this first two weeks suck and by the third I am feeling more normal. By week 4 I finally feel good. Hope you feel better soon.

Hez

jerseyangel Proficient
Crying? Wow!

Was I diagnosed right? I never went through this stuff. Diareha, constipaton, and bloating is all I've ever benn through.

Man, I really feel bad for what you guys are all going through.

Depression and anxiety are two of the symptoms of Celiac. Not everyone gets them, but for those of us that do, crying is sometimes a part of it. :)

aikiducky Apprentice
how about symptoms actually being worse a week later? After i posted that i ended up with really bad diarrhea :angry: and my stomach has been kind of sore all week when i eat anything

(im just worried that it could be something else after i thought i had it sorted and had accepted it)

My symptoms are also worst about a week after being glutened. First I feel bad for a couple days, then I start to feel better, then a week from the glutening I feel the worst, and after that start to feel better quickly. Finally everything returns completely to normal three weeks after.

I used to think it had to be something else as well, until I started to notice this pattern of feeling the worst regularly one week after a glutening.

Pauliina


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



Celiac.com Sponsor (A8-M):



4getgluten Rookie

Hang in there, this sounds normal to me too. For me, the healing process was like 2 steps forward, 1 step back. I'd be feeling really great, then bam, I'd feel bad again. Sometimes I could find what caused me to feel sick, sometimes I couldn't.

From my experience, as I began to heal, I also got more sensitive to gluten. Keep looking for hidden sources. I found gluten in my shampoo and my hand lotion. I also found that I had to be careful of cross contamination. Products that are gluten-free, but made at the same facility as gluten containing products, usually don't work for me.

It takes awhile to get used to the diet and to figure out what foods work for you. I've been gluten-free for almost a year now, and I can't believe how good I feel. It will get easier, I promise!

tiredofdoctors Enthusiast

I think it's normal . . . I just got "glutened" because my husband had to go on a business trip unexpectedly in the middle of the day (get your stuff, fly out, the client is furious) -- but had eaten Penn Station subs for lunch. With lots of kissing prior to him leaving, and him not flossing beforehand . . . I ended up with increased symptoms this entire week. (I'm hoping that it is going to subside SOON!)

Pois Newbie

Goodness! I never even thought of that! (i wonder if thats why im having more trouble the last couple of days....im sick of wondering all the time. I think too much!)

Im still kind of stressed that it could be something else cos the diarrhea and bloating dont seem to be going away and ive been super careful(though thankfully the heightened depression feelings have settled down and yesterday i had a crying free day woohoo!)

Pois Newbie

and now its back! The crying came back today - after being ok all weekend, and the diarrhea hasnt stopped. Its at the point where ANYTHING makes me go. Im a bit of a mess, still wondering if its something else....

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,627
    • Most Online (within 30 mins)
      7,748

    kathrynhmarks
    Newest Member
    kathrynhmarks
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Inkie
      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.