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Diagnosis Question?


zip2play

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zip2play Apprentice

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

I am having problems finding this post???

jenvan Collaborator

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

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

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

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

tarnalberry Community Regular
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

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

jenvan Collaborator

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

Rachel--24 Collaborator

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

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
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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