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Symptoms ongoing

nataliet24
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nataliet24 Rookie
nataliet24
Posted

Is it worrying that I still don’t feel any better after being gluten free for nearly 7 months. Still have constant belly pain everyday and brain fog. Worrying I will have refractory coeliac I’m only 22 and had total villous atrophy 

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cyclinglady Grand Master
cyclinglady
Posted

What is your definition of being gluten free?  Do you eat out?  Eat processed foods?  Does anyone else prepare your food?  Do you live with gluten eaters?  Do you have safe kitchen practices?  

Ennis and I addressed this in a previous post.  We could really use some input from you.  As it stands now, we can only guess that you are not diet compliant.  

Have you been back to the doctors for follow-up testing?  Have you seen a dietician?  

I really doubt you have refractory.  It is so rare!  But only your doctor can verify this.  

 

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    • StuartJ
      Gluten Sensitivity

      By StuartJ · Posted

      Well, three months later and a startling revelation!  After going gluten free (and nearly bankrupt buying special foods), my wife made a lunch of meat potatoes and gravy made with Bertolli white sauce - no wheat there right?  Big flare up withing hours and I was really wiped out with it.  She rechecks the label on the sauce bottle and right at the bottom of the ingredients XANTHAN GUM. There's our #1 suspect again!  So by way of experimenting, she decided to try making a loaf of bread with just regular white flour like she used to do and see what happened; the familiar smell hit me when I walked in the door last night and I sat down to eat this still warm, fresh goodness - I thought even if I have to take Imodium sandwiches, it will be worth it 😋 No ill effects, either overnight or today!  Half the loaf is now gone because I had some for supper, saving just one last slice for breakfast in the morning` - I've used the bathroom once and that was normal, so maybe it is not the gluten after all? Can't wait to try a beer! 😁
    • trents
      Could this be a new intolerance

      By trents · Posted

      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
    • Celiacpartner
      Could this be a new intolerance

      By Celiacpartner · Posted

      Thanks so much for the responses. I will urge him to go for further investigation. To be 48yrs old and develop a new allergy.. ugh, As if celiac disease isn’t enough! 
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      Could this be a new intolerance

      By trents · Posted

      This does not seem to be an anaphylactic response but I agree it would be wise to seek allergy-food sensitivity testing. You might look into ALCAT food sensitivity testing.
    • Rogol72
      Could this be a new intolerance

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