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Can I Be Gluten Intolerant Without Having Celiac Disease?

Elicia1968

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Elicia1968 Newbie
Elicia1968
Posted

Is it possible to be gluten intolerant without having celiac disease? I took a stool test that said I was off the charts gluten intolerant, but my blood test was negative. I am aware that I need more testing to confirm the diagnosis. I ask this question because I will sometimes eat gluten, or generally just not be super careful when I am out because I figure I might not feel good after, but I am not doing any damage to my body. I know this sounds crazy and stupid, and it drives my husband nuts, but if I knew I was doing damage I would be more careful.

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happygirl Collaborator
happygirl
Posted

You can be gluten intolerant/gluten sensitive without having Celiac. The link "Gluten Sensitivity" on this page: Open Original Shared Link has good information.

Which blood tests did your doctor run?

Welcome to the board!!!

ravenwoodglass Mentor
ravenwoodglass
Posted

You have a good hubby there. You need to just as strict as someone formally diagnosed with celiac. Negative blood tests are not uncommon amongst us. My negative blood work delayed my diagnosis by years, many painfull ones. I was positively diagnosed celiac by my bodies response to the diet and the extreme reaction I had when I was ordered to do a challenge for the biopsy. In some folks criteria I would be considered to be gluten intolerant because of the negative blood work. If you want to know what eating gluten can do to someone who is 'just gluten intolerant' just give my signature a lookover.

Don't cheat on the diet, you need to be just as strict as a 'gold standard' celiac.

It is very important if you are going to pursue a biopsy that you don't go gluten free yet. If you have been gluten free and gotten good results from the diet then I personally would just consider yourself diagnosed and stick with it.

Jestgar Rising Star
Jestgar
Posted

If gluten makes you feel bad when you eat it, then you certainly aren't doing your body any favors by keeping it in your diet. Usually things that make us feel bad are bad for us.

sussarliv Newbie
sussarliv
Posted

This is me. My blood work came back low positive for gluten intolerance / celiacs. My biopsy showed up negative.

I was off of gluten for 1 week between the blood test coming back and the appt with the GI who then told me to go back on gluten to do the biospy.

Within that 1 week, I felt great - lost a ton of bloat, was going to the bathroom normally and my body achs and cracking stopped. I have now been gluten free for almost another week (since the biopsy was done) and I am having the same positive body reactions as I did last time :)

My dr want's be to be gluten free for 1 month and he put me on Align. Then at the end of the month I am supposed to call him and let me know how I am feeling. We will then decided how to proceed. If I am feeling how I am and/or better, I will be gluten free for the rest of my life!!!! Regardless of what the Dr. says.

Good luck!

Susan

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    • trents
      symptoms.

      By trents · Posted

      Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and countertops. And what about that toaster you mentioned?
    • knitty kitty
      Newly Diagnosed

      By knitty kitty · Posted

      Hello, @NCalvo822, Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure.  These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract.  Joints can ache, thyroid problems or the pancreas can develop.  Ataxia is just one of over two hundred symptoms of Celiac Disease. Some people with Celiac Disease also make tTg IgA 6 antibodies in response to gluten exposure.  The tTg IgA 6 antibodies attack the brain, causing ataxia.  These tTg IgA 6 antibodies are also found in people with Parkinson's disease, though they may not have Celiac Disease.  First degree relatives (parents, siblings, children) of those diagnosed with Celiac should be tested as well.  Celiac is genetic.  Your mom and sister should be tested for Celiac, too!   Definitely a good idea to keep to a gluten free diet.  
    • knitty kitty
      symptoms.

      By knitty kitty · Posted

      @Rebeccaj,  When you smell toast or pasta cooking, that means that particles of that food are floating around in the air.  Airborne gluten can then be inhaled and swallowed, meaning the food particles get into your digestive tract.   If you're careful to avoid gluten and are still having symptoms, those symptoms could be caused by vitamin deficiencies.  
    • Rebeccaj
      symptoms.

      By Rebeccaj · Posted

      ok thanks for your advice. But my question was what happens when someone you know in a house is cooking pasta or toast that's flour  Airbourne without eating.?
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