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

How Can I Tell If I Am Celiac Or Just Sensitive? Are There Specific Symptoms Or Signs?


bleufulol

Recommended Posts

bleufulol Newbie

Hi all,

I'm new to this site, but I've been gluten-free for about a year and a half after doing an elimination diet due to some symptoms I was having...and felt MUCH better. However I had a celiac test about a year ago and it came back negative, although my doctor told me it was pretty much useless because I didn't eat gluten leading up to it. I've been pretty careful, but yesterday went out to eat and accidentally consumed gluten. I'd forgotten how AWFUL I feel--I got the worst brain fog and fatigue after, and today I woke up feeling exhausted, my joints hurt, muscles feel a weird mix between achy and weak? among other things. Anyway, just wondering if there are any telltale signs of celiac disease versus just intolerance? Haven't found any online. Just feel so crappy that I can't imagine "just" an intolerance could provoke something like this? unless I'm mistaken. 

 

I can't imagine going on a glutenous diet for weeks just to be accurately tested!


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



Celiac.com Sponsor (A8-M):



notme Experienced

the sad reality is, that is exactly what you would need to do at this point to be tested.  :(  the same thing happened to me (so, my blood test came back negative because i'd been off gluten, therefore no antibodies to detect)  hopefully they will develop a better test soon.  you could get an endoscopy, but, same thing:  you would need to go back on gluten for a few months.  i was dangerously malnourished and my doc advised not to.  i was diagnosed pretty much by accident.  

 

so, there are your choices:  continue on the gluten-free diet and doubt your exact problem or consume gluten and get tested.  sorry to say, celiac is under-diagnosed and mis-handled by the medical profession all too often.

 

good luck and welcome to the forum :)  (sorry to be debbie downer lolz)

nvsmom Community Regular

The only real difference between celiac disease and NCGS is what shows up in the diagnostic tests.  Celiacs can be positive in the ttG, DGP, and EMA blood tests.  Celiacs will usually (80+%) show villi damage during and endoscopic biopsy, or show antibodies during a skin biopsy.  The AGA tests are positive in many celiacs and in a minority of those with NCGS - it's not a very sensitive or reliable test.

 

Otherwise the symptoms are the same.  Nutritional deficiencies, neuropathies, migraines, arthritis, stomach aches, D, C, rashes, fatigue... all the same symptoms.  :(

 

If 2-3 months on gluten is too much, I would skip the test too.  The test outcomes wouldn't matter because you already know the treatment, right?  ;)  Welcome to the board.

BlessedMommy Rising Star

Welcome to the board!

 

I can't do 2-3 months of gluten, so I live 100% gluten free. It works for me and keeps me as a functioning, productive member of society.

cashs mom Rookie

This is a very interesting thread for me.  I have also gone gluten free on the advice of my chiropractor after going to 3 doctors and taking more and more stuff and getting worse.  With me my main symptom is sleeplessness and feeling like I'm tired but wired all the time.  I do feel better since going gluten free but I'm struggling as to what I can and can't eat.  I'm not sure I want to eat gluten and go back to feeling so bad and barely sleeping since I've developed a sensitivity to so many other things that would help me sleep that I'm afraid to take anything.   I'm thinking after reading this, I may have to just go ahead and stay gluten free so that I can continue to be productive.  Being self employed, I can't afford to be non functional for 2 to 3 months.

dbva Newbie

I just tried to do the gluten challange after being gluten free for two years, and your symptoms are EXACTLY what I have been going through! I decided I can't do this to myself for any longer and am going back on a gluten free diet. I wanted to know if it was celiac or an intolerance, but since the treatment is the same, it's just not worth it to me.

I will add that my mom was diagnosed as celiac, so it runs in my family and I already know the odds of my having it are good, especially with an obvious intolerance. I wish I could handle it simply to "cast my vote" for the number of diagnosed individuals, as the more people that are officially diagnosed would increase awareness, but I just can't do it.

Good luck with whatever choice you make as far as testing :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,896
    • Most Online (within 30 mins)
      7,748

    Judy M
    Newest Member
    Judy M
    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

    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • 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.