Years of testing - no real answers

[Kiwifruit]

Hi everyone.

I have a history of GI issues (gas, diarrhoea, pain, fatigue).

In 2018 I had a a blood test that returned “weak positive” for Celiac (I don’t have access to this result) and in early 2018 I had an endoscopy. The dr said by appearance he believed it would be Celiac but biopsy said no.

2022 I had another blood test with results:

Anti TTG IgA: 27 units (norm 0-20) high

IgA: 0.9 g/l (norm 0.8 - 4.0)

Endomysial antibodies: neg

I had a colonoscopy and endoscopy and had the same abnormal appearance but negative biopsies. All my dissachrides were low so I was referred on to a dietitian.

I am still struggling with all my GI issues but now with nausea, brain fog and weakness/joint pain even following the low disaccharide diet with enzymes. I’m now pondering my previous results and see that all 3 low disaccharides can also be an indicator of Celiac.

I’m struggling and so confused and wondering if anyone has any guidance or advice for me?

Thank you 

 

 

[trents]

Welcome to the forum, @Kiwifruit!

Were you on a reduced gluten diet when those blood tests or the biopsies were done?

[Kiwifruit]

2 hours ago, trents said:

Welcome to the forum, @Kiwifruit!

Were you on a reduced gluten diet when those blood tests or the biopsies were done?

Thank you for your reply. I was having about 2 slices of bread a day and other incidental gluten (occasional crackers and baked goods) so not reduced from my normal but not the 6 slices of bread like I’ve now seen suggested somewhere.

[trents]

Yeah, you may not have been consuming enough gluten to result in valid testing.

[Kiwifruit]

25 minutes ago, trents said:

Yeah, you may not have been consuming enough gluten to result in valid testing.

That’s good to know. Might be time to head back to my gastrointestinal doctor then.

[knitty kitty]

Welcome to the forum, @Kiwifruit,

I agree further testing is needed.  Disaccharidase deficiency is a symptom of Celiac disease.  

On your test results, this line  "IgA: 0.9 g/l (norm 0.8 - 4.0)" is referring to Total IgA and it's very low.  People with low or deficient Total IgA should also have DGP IgG test done.  Low Total IgA means you are making low levels of tTg  IgA as well, leading to false negatives or "weak positives".  Maybe a DNA test for known Celiac genes.  

Anemia, diabetes, and thiamine deficiency can cause test results like these.  Get checked for B12 deficiency anemia and have your iron (ferritin) checked.  Vitamin D deficiency is common, too.  

Might be time to find a gastrointestinal doctor who is more familiar with diagnosing Celiac Disease.  

Best wishes on your journey!  Please keep us posted on your progress.

 

[trents]

See attachment which is excerpted from this article: 

 

[Kiwifruit]

5 hours ago, trents said:

See attachment which is excerpted from this article: 

 

This is all really useful information, thank you so much to you both. 
 

I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.

[dublin555]

Typical of how celiac can slip through the cracks. If the biopsies keep coming back negative, I’d start questioning whether the tests are being done right or if there’s something else going on, like non-celiac gluten sensitivity or another autoimmune issue. It’s maddening how hard it can be to get straight answers.

[knitty kitty]

The intestinal tract can be as long as twenty-two feet long, so intestinal damage may be out of the reach of endoscopy tools.  Some people have had more success with capsule endoscopy, but this method cannot take biopsies.  

[Kiwifruit]

Hi I just wanted to update you all and let you know that I finally have my diagnosis. 2 weeks ago I had my third gastroscopy and the biopsy confirmed the damage. Thank you for giving me the information I needed to advocate for myself when I a was a feeling so lost!

[trents]

Thanks for following up with us on the results.

This might be helpful to you now:

 

[Kiwifruit]

1 hour ago, trents said:

Thanks for following up with us on the results.

This might be helpful to you now:

 

Thank you!