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Diagnosis Question?

zip2play

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zip2play Apprentice
zip2play
Posted

I had hiatal hurnia surgery and gall bladder removal in 2003. Since then I have had horrible gas/bloating, stools have become odd at best. I was diagnosed with IBS and have tried to eliminate diary and such that make IBS worse. I am also on Zelnorm. At the same time I have been tested for Thyroid issues because I have horribly fatigued all the time. I recently read an article on Celiac and I believe that is a more accurate description of what I have.

My question is, what tests should I have the DR run? Start with the blood tests? I have read that negative blood results are not necessarily accurate. So do I also request a biopsy?

I truly want to end my issues. Some days are horrible. My stomach hurts so bad I don't eat. Other days aren't too bad. But I am a MOM of 2 and I want to be able to function better. The fatigue is probably the worst of my symptoms. I seem tired all the time. I even sleep 7 to 8 hours a night. I exercise regularly so IMHO I shouldn't be this fatigued. I was labeled IBS in my opinion, b/c it was an easy diagnosis. But I want definate answers.

Anything you can tell me would be greatly appreciated!

Thanks!

Monica

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zip2play Apprentice
zip2play
Posted
  • Author

I am having problems finding this post???

jenvan Collaborator
jenvan
Posted

You definitely have some celiac symptoms. The easiet route is to start with the blood test. Go here to see info on getting tested, it is an easy blood test most any doctor can have run. Don't let your doctor discourage you either--its your body! Open Original Shared Link Sorry for all your pain and discomfort! Keep up posted on your search!

zip2play Apprentice
zip2play
Posted
  • Author

I have done a little food testing of my own. I typically eat eggs for breakfast. Today I had 1/2 of a bagel with it. NOW my stomach is killing me! :unsure:

jenvan Collaborator
jenvan
Posted

Just make sure if you get tested you are consuming gluten... meaning, don't go gluten-free for several weeks and then get tested--the results wouldn't be accurate.

zip2play Apprentice
zip2play
Posted
  • Author

Thanks! I had read you definitely need to be eating it at the time!

tarnalberry Community Regular
tarnalberry
Posted
My question is, what tests should I have the DR run?  Start with the blood tests?  I have read that negative blood results are not necessarily accurate.  So do I also request a biopsy? 

<{POST_SNAPBACK}>

Getting tested is a good idea. Starting with the blood tests is the right way to go; the standard panel is anti-gliandin IgA, anti-gliandin IgG, total IgA, tTg (tissue transglutimerase), and EMA (endomyosial antibodies). Your doctor can look them up if need be. ;-) Do not go off gluten before the testing!

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zip2play Apprentice
zip2play
Posted
  • Author

Something else is, I am COLD all the time! I mean, COLD!?!?!

jenvan Collaborator
jenvan
Posted

hmmm, are you anemia? that is a common symptom of anemia. and anemia is frequent with celiac.

Rachel--24 Collaborator
Rachel--24
Posted

I get cold after I've been glutened. I'm not sure if its the gluten reaction itself or if its because gluten accidents affect absorption of my thyroid medication. Feeling cold is a sign of low thyroid.

zip2play Apprentice
zip2play
Posted
  • Author

My thyroid is fine. We had that tested earlier this year.

I spoke with my family DR. She doesn't feel qualified to test/treat this. She has referred me to a Gastro Specialist. Only problem is his first appointment is November 28th! Hopefully he can test me immediately!

Thanks for your help!

As for anemia, I have no idea if I have that?!?

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    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      IBS-D vs Celiac

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      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      IBS-D vs Celiac

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      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
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      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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