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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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      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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