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

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

bleufulol

Recommended Posts

bleufulol Newbie
bleufulol
Posted

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
notme
Posted

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
nvsmom
Posted

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
BlessedMommy
Posted

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
cashs mom
Posted

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
dbva
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,413
    • Most Online (within 30 mins)
      7,748
    G.VER
    Newest Member
    G.VER
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Waiting on Blood test results…

      By Scott Adams · Posted

      It looks like they will now order the Tissue Transglutaminase IgA Antibody test, but verify this with your doctor.
    • trents
      Reaction to gluten or gastro bug?

      By trents · Posted

      I think you know enough to conclude that your son either has celiac disease or NCGS (Non Celiac Gluten Sensitivity). As soon as you removed gluten from his diet his stools firmed up. It is also very common for celiacs to be intolerant of dairy and soy, so that is another piece of corroborating evidence. If I were you, I would consider getting your sone genetically tested for the genes we know are associated with celiac disease. There are two main genes looked for, HLADQ2 and HLADQ8. Having either or both provides the potential for developing celiac disease. But since about 40% of the general population have one or both of the genes it cannot be used to diagnose celiac disease. But it can be used as a rule out measure if both are absent, thus pointing one in the direction of NCGS. If one or both are present, there is the possibility of either celiac or NCGS. NCGS is 10x more common than celiac disease by the way. The two conditions share many common symptoms. The difference being that NCGS does not damage the lining of the small bowel as does celiac disease. Celiac disease is actually an autoimmune disorder. At any rate, both conditions require a gluten free diet so, at the end of the day, that is the antidote for both. Some experts feel that NCGS can be a precursor to the development of celiac disease.  I would also make mention of the fact that once gluten is removed from the diet and then added back in for the gluten challenge, reactions are often more violent as all tolerance has been lost.
    • cristiana
      Reaction to gluten or gastro bug?

      By cristiana · Posted

      Hello @Beck1430 and welcome to the Forum. I am sorry your little boy is going through this. Your question is an interesting one.  I would say the majority of posts I have read since joining this forum speak of a fairly quick reaction, and that has been my own experience.  The only major gluten hit I've had in more recent times resulted in chills, dizziness and vomiting about 2-3 hours after eating gluten.  It was truly horrible.  The fact that I vomited was new for me - I didn't get diarrhea which had been my classic reaction in the past.  It was as if in going totally gluten free my body has decided to react more violently to gluten, and quite differently.  Reactions can change over time - the fact that your son is reacting differently doesn't necessarily mean that gluten isn't the culprit. Anyway,  this study is interesting in that it states that it is possible to react 12 hours later. https://www.schaer.com/en-us/a/how-long-after-eating-gluten-do-symptoms-start#:~:text=A survey published in Alimentary,by 12 hours or more. I am afraid the only way you will probably know for sure is to repeat the challenge again, but I can completely understand your reluctance to do that.  I wonder if I can ask a couple of questions: Regarding the rash - has that also subsided since giving up gluten?   There are quite a lot of photos of dermatitis herpetiformis to see online, I wonder if you think what your son had/has was similar? Also, do you have coeliac disease in the family?  It is inherited and if you have others in the family, that could point more strongly to your son having coeliac disease. Cristiana
    • Beck1430
      Reaction to gluten or gastro bug?

      By Beck1430 · Posted

      Hi there, I'm looking for some advice for my 2 year old. After he turned one he started eating more foods like pasta and breadsticks and our supermarket finally started to stock a soy free bread (he has an intolerance to dairy and soy) so he started eating bread for the first time.  He began having foul, loose nappies, which I assumed must be teething, but this went on and on for a couple of months. Coupled with that, he started having patches of red scaly skin, a little bit like eczema but more widespread. He was also very tired and quite miserable. Given that it all coincided with him starting to eat a lot more gluten, his dietician recommended I eliminate gluten to see what happened. His poos immediately changed back to normal and were finally formed, and he’s been off gluten since last summer.   Fast forward 6 months and we did a wheat challenge yesterday, giving him a small breadstick at about 11am. He seemed ok through the day but 11pm he woke up vomiting, and was sick 3 more times over the course of 90 minutes and was writhing in pain on the floor crying about “poo” which never came, and today he has done a normal poo.  My two questions are: Is it possible that this was a reaction to the gluten if it came 12 hours after ingestion? Or is that too long to cause vomiting? I wonder if it’s more likely an unrelated bug but can’t work out where from as we’ve had a quiet week. Would there not be loose stools too if it was a reaction to gluten? Before going gluten-free, this was his main symptom!   If it could be the gluten that caused this, where do we stand with ever testing for coeliac? Now that I know more about the testing I don’t know why his dietician didn’t recommend we do that before removing it from his diet before. Seems cruel to make him ill for the sake of a test. Grateful for any pointers or advice. Thank you!   
    • ChrisSeth
      Waiting on Blood test results…

      By ChrisSeth · Posted

      Okay thanks Scott. So based on my results will they order more tests to be done? Kind of confused.
×
×
  • Create New...