Is this celiac?

[Greek4eva323]

My endoscopy showed mild duodenal intraepithelial lymphocytosis with preservation of the villous architecture. 

I tested positive for both the DQ2 and DQ8 Celiac genes. I was put in a 1 out of 24 risk for Celiac passed off the gene test results. 

These were the results of my most current celiac blood panel. 

Endomysial IGA

Negative

T-Transglutaminase (Ttg) IGA

Your Value<2 U/mL

Standard Range0 - 3 U/mL

Iga

Your Value398 mg/dL

Standard Range87 - 352 mg/dLFlagH

(In March this was at at 366, now it's up to a 398).

T-Transglutaminase (Ttg)

Your Value6 U/mL

Standard Range0 - 5 U/mLFlagH

Waiting to talk to Gi but curious what others think. 

[knitty kitty]

Welcome to the club!

(Not diagnostic, just familiar symptomology commonly seen in Celiac Disease).

 

[Greek4eva323]

I just dont know if I should take it as celiac or not? My endoscopy was done when I very first started showing symptoms. Could there have not been damage yet because it was caught at onset?

 

I was hoping the 2nd celiac panel would give me clear cut answers. 😞

[Scott Adams]

It looks like you have a positive blood test for celiac disease: T-Transglutaminase (Ttg) 6 U/mL (Standard Range 0 - 5 U/mL Flag H), and you have both genetic markers for it, and these two things mean that you most likely have celiac disease. Even if your biopsy were negative I think you should still consider going gluten-free.

Were you eating 2 slices worth of wheat bread per day for 6-8 weeks before your blood test? If not your values would have likely been higher. Be sure to keep eating this much gluten daily for at least 2 weeks before a biopsy.

[Greek4eva323]

  On 6/20/2022 at 5:09 PM, Scott Adams said:

It looks like you have a positive blood test for celiac disease: T-Transglutaminase (Ttg) 6 U/mL (Standard Range 0 - 5 U/mL Flag H), and you have both genetic markers for it, and these two things mean that you most likely have celiac disease. Even if your biopsy were negative I think you should still consider going gluten-free.

Were you eating 2 slices worth of wheat bread per day for 6-8 weeks before your blood test? If not your values would have likely been higher. Be sure to keep eating this much gluten daily for at least 2 weeks before a biopsy.

Expand Quote  

 

 

I went gluten free for only 2 weeks after my biopsy, blood test, and gene test. Then I got a 2nd opinion began eating gluten again for 4 weeks and redid the blood panel. 

[Scott Adams]

What does your doctor say?

[Awol cast iron stomach]

  On 6/18/2022 at 5:40 PM, Greek4eva323 said:

My endoscopy showed mild duodenal intraepithelial lymphocytosis with preservation of the villous architecture. 

I tested positive for both the DQ2 and DQ8 Celiac genes. I was put in a 1 out of 24 risk for Celiac passed off the gene test results. 

These were the results of my most current celiac blood panel. 

Endomysial IGA

Negative

T-Transglutaminase (Ttg) IGA

Your Value<2 U/mL

Standard Range0 - 3 U/mL

Iga

Your Value398 mg/dL

Standard Range87 - 352 mg/dLFlagH

(In March this was at at 366, now it's up to a 398).

T-Transglutaminase (Ttg)

Your Value6 U/mL

Standard Range0 - 5 U/mLFlagH

Waiting to talk to Gi but curious what others think. 

Expand Quote  

I am labeled NCGS. I had high amounts of eosinophils and lymphocytes. I had inflammation starting at my esophagus, my stomach was horrible to the naked eye, then they got to the intestines. 

They initially were concerned I might have Barrett's esophagus although I don't match the particular profile. 

The pathology results revealed it was not Barrett's. Based on my other results negative for IgE mediated wheat allergy, and no villi damage not considered celiac. (Full disclosure side note I had to undergo a 2 week gluten challenge I was unable to complete the full 2 weeks.)

I am currently diagnosed NCGS with additional food intolerances, coupled with environmental allergies. My family is on the allergy/asthma spectrum, and I have a Celiac cousin. 

With me it was rule out IgE wheat, and Celiac with both scopes. From there it was food elimination diet to determine food intolerances. Even though I am not celiac I get a ton of symptoms gi, skin/rash/flushing, brain fog, neurological, edema, visible distension/bloating, my organs also experience inflammation.  So they were able to witness I am intolerant.

Best wishes on your journey to diagnosis, and healing.

 

Edit forgot neuropathy symptomology which is why I initially went self imposed gluten-free, prior to testing .( I was misdiagnosed IBS based on gi symptoms only for 20 plus years prior.) 

Edited June 21, 2022 by Awol cast iron stomach
Forgot symptom