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Blood and endoscopy results

LeahMc
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Go to solution Solved by Scott Adams,

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LeahMc Newbie
LeahMc
Posted

Hi all,

I've been visiting this site for awhile but finally have something to say.  Apologies for length.

I've been seeking a diagnosis or at least an idea of what is wrong for years now.  Extreme fatigue, anemia, b12 deficiency off and on, years of diarrhea etc.  Finally an internal medicine doc sent me for celiac blood test just to rule out.

2 blood tests in a row came back what the lab rules as "borderline".

Tissue Transglutaminase Ab IgA  13.3  Reference units: <12.0 U/mL  Borderline

Referred to gastro for endoscopy.  He greets me in the hospital and says he's sure it's not celiac and since I was diagnosed with IBS before, that's definitely it.

Pathology results:

Duodenum, normal.

Duodenum, bulb, mucosal biopsy: duodenal mucosa with increased intraepithelial lymphocytes (about 40/100 enterocytes) and mild villous blunting without crypt hyperplasia (see Comment)   Specimen B: The overall histological findings are non-specific but may represent early/evolving Celiac disease, non-diagnostic sample of Celiac disease, irritation from stomach acid, infection, drugs, or others. Correlation with clinical and other laboratory findings is recommended.

Gastro calls to say it's not celiac and "good luck".

Internal medicine says he still thinks it is and instructs to go on gluten free diet for 3 months to see if the blood test results change.   Just got those:

Tissue Transglutaminase Ab IgA  4.4  Reference units: <12.0 U/mL  Negative

I am feeling better every day so I'll be staying on gluten free no matter what but this looks likely to me.  Thoughts?

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plumbago Experienced
plumbago
Posted

Looks to me like this is celiac. Go for a second opinion. Preferably someone with experience dealing with celiac disease.

trents Grand Master
trents
Posted

Realize that once you have started on a gluten-free diet you will invalidate any future testing for celiac disease. And if you had been eating a low gluten diet before the original diet it would have suppressed the test numbers. But I agree with plumbago, the proof is in the pudding since your symptoms are disappearing with gluten free eating. The improvement in your symptoms, certain elements of the endoscopy/biopsy pathology report and the antibody blood test numbers all add up to celiac disease in my opinion.

RMJ Mentor
RMJ
Posted

Sounds like celiac disease to me. Symptoms, slightly positive blood test, abnormal biopsy results that indicate celiac disease..  I hope you continue to feel better as you are on the gluten free diet for longer.

I don’t understand why some doctors, even gastroenterologists, seem to be so resistant to diagnosing celiac disease. 

plumbago Experienced
plumbago
Posted

Yes, and when I say go for a second opinion, I mean, just bring your results to him/her. No need to repeat tests.

LeahMc Newbie
LeahMc
Posted
  • Author

Thanks @plumbago, @trents, @RMJ, I appreciate the feedback.

I'll see the internal medicine doc again next week and see what he says.  

 

Scott Adams Grand Master
Scott Adams
Posted

Your first blood test was positive, and not "borderline." Your biopsy results were indicative of early celiac disease, thus also positive. It looks like you indeed may have celiac disease, especially if your symptoms go away on a gluten-free diet. I have no idea why  your doctor is avoiding the proper diagnosis here.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

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knitty kitty Grand Master
knitty kitty
Posted

@LeahMc,

Ask for a DNA test to see if you have any of the known genes for Celiac Disease.  

Those symptoms, the pathology report, and the blood tests say positive to me, too.

Keep us posted on your progress!

  • 1 month later...
LeahMc Newbie
LeahMc
Posted
  • Author

Hi all, thank you for the comments.

The follow up with the internal medicine doctor was good.  He clarified that the gastro report said that "it could be celiac or not", not definitively no.

The internal med doc has said that at this point it's a differential diagnosis and that I should assume it's celiac and run with it.  As long as I feel better, he thinks there's no harm.  

Positive blood test.

Damaged villi.

Blood test negative after 3 months on gluten free diet.

Feeling better on gluten free diet.

Thanks for this resource everyone, I'm learning a lot!

 

 

  • Solution
Scott Adams Grand Master
Scott Adams
Posted
  • Solution

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

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    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

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