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
      131,702
    • Most Online (within 30 mins)
      7,748

    Coach Chris
    Newest Member
    Coach Chris
    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

    • Gigi2025
      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
×
×
  • 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.