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Decided not to be tested

Auntsheel

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Auntsheel Newbie
Auntsheel
Posted

Hi all,

I had an intestinal biopsy done many years ago after positive blood work.  Long story short, the endoscopy procedure was a nightmare - I was wide awake when the doc placed the tube down my throat, and I was kicking and fighting.  I guess the Fentanyl or Versed, whatever they used, didn't work.  The biopsy came back inconclusive for Celiac Disease.  Most recently, I've been having issues with chronic constipation and stools that were very hard to pass.  It was so scary.  For some reason, something clicked, and I decided to go on a gluten free diet.  I could not believe the difference.  I can't say that I can "go" all the time with no problem, but it's so much better than before.   At first I thought I am probably just gluten intolerant, but the real test was when I went and ate a burger on a regular bread, or a quesadilla on a flour tortilla (like i did yesterday). Lo and behold, I'm at the store buying saline enemas, and I'm miserable.  I'm bloated, my pants are too tight, and I just want the pressure to go away.  

At first I didn't want to go through the biopsy again, because I'm also dealing with cervical stenosis, and have had so many doctor's appointments and procedures, that I don't want to take even more time off from work.  But as miserable as I was (and kind of still am) today, from glutening myself, I'm pretty sure I just need to avoid gluten completely.  I am also lactose intolerant, so figuring out what the heck to eat isn't an easy task.  I guess I'll eventually get used to it, though.  

Anyway, nice to meet all of you.  I'm interested in searching through the gluten free recipes.  So far I've made my own gluten free pizza crust (pretty good) and gluten free bread (it was awful and looked like Shrek).  

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  

Glad you are in your way to recovery.  Try reading our Newbie 101 thread pinned at. The top of the "Coping" section of the forum.  Lots of great tips.  

 

ravenwoodglass Mentor
ravenwoodglass
Posted

I will never understand why doctors discount positive blood work if damage happened to be missed on the endoscopy. If you have positive blood work you have celiac since the tests are for the most part specific to celiac disease.  Good to hear you are back on the diet and do read that Newbie thread that Cyclinglady recommended. Do ask any other questions you may need answered.

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    • 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

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      Could this be a new intolerance

      By Rogol72 · Posted

      @Celiacpartner, I agree with Scott. We have a food festival yearly in the town I live in, with artisan food stalls everywhere. I spoke to the owner of one of the artisan burger stalls, enquiring if the burgers were gluten-free when I said I was Coeliac ... he said he had a serious anaphylactic allergy to fish himself. He possibly carries an epi-pen or two everywhere he goes. I would go see an allergist as soon as possible as suggested.
    • Scott Adams
      Could this be a new intolerance

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