Blood and endoscopy results

[LeahMc]

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?

[plumbago]

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

[trents]

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]

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]

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]

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]

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. 

 

 

[knitty kitty]

@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!

[LeahMc]

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!

 

 

[Scott Adams]

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.):