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


bleufulol

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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!


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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 :)

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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
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