Test and biopsy results - no confirmation from MD yet

[Vera W]

Greetings! 

After a year and a half of feeling terrible,  I was fortunate enough to find a doctor who thought to test for Celiac,  and sent me to gastro for a biopsy. Unfortunately, neither one has returned my calls/emails to discuss the results. (Which I have access to.)

Results:

Gliadin Deaminated Antibody IgA
Normal value: <7.0 U/mL
Value 19.0 High
INTERPRETATION: Positive

Gliadin Deaminated Antibody lgG
Normal value: <7.0 U/mL
Value 102.0 High
INTERPRETATION: Positive

Tissue Transglutaminase IgA Ab
Normal value: <7.0
Value 8.3 High

Tissue Transglutaminase lgG
Normal value: <7.0 
Value 1.3
INTERPRETATION: Negative

Immunoglobulin A (IgA)
Normal range: 70-400 mg/dL
40 Low

Duodenum, biopsy:
-Partial villous atrophy with increased
intraepithelial lymphocytes, compatible
with gluten sensitive enteropathy

Once I saw my bloodwork,  I assumed I had some issues with gluten. 🫠 Since cutting it out, the headaches I've had for over a year are almost totally gone. The crushing fatigue, 90% improved. 

I'd just like a confirmation of diagnosis so I can monitor appropriately. Am I reading these correctly? What questions should I ask if these people ever get back to me?

Referral to dietician? Bone scans? (I'm 46, having joint pain...) How frequently do we follow up with endoscopy?

Thanks for any advice or help.

 

[RMJ]

Welcome to the forum! Yes, with those results your doctor should diagnose you with celiac disease.  I’m glad your doctor thought to test for it and glad you’re already feeling better!

[trents]

Welcome to the forum @Vera W!

Both your bloodwork and your biopsy are positive for celiac disease. Of note is that your immunoglobulin A (IgA), what we often call "total IGA" is low. This one is not a celiac antibody test per se but a measure of over all IGA antibody load. If it is low it will drive down the values of the individual IGA antibody tests. So, for instance, your Tissue Transglutaminase IgA Ab, which was high at 8.3 would have likely been higher had your total IGA score been in the normal range. It cannot be reasonably doubted that you have celaic disease. Improvement in your symptoms confirms this.

Personally, I see no need for a referral to a dietician as there is plenty of info available on the internet regarding gluten free eating and nutrition. I will include a link in this post that will be helpful to you. Vitamin and mineral deficiencies almost always accompany long-term undiagnosed celiac disease because of the damage done to the small bowel lining, the are of the GI track where all our nutrition is absorbed. We routinely recommend to our adult forum members who are recently diagnosed to supplement with sublingual B12, a high potency B-complex, 5-10k IU if D3, Magnesium glycinate (not the more common magnesium oxide) and zinc. Make sure all supplements are gluten free. Costco's Nature Made, Nature's Bounty and Kirkland Signature lines are a good value and will be labeled gluten-free if they are.

A bone scan might be a good idea. The D3 supplementation will help with demineralization.

I would get follow-up antibody testing in about six months from beginning of gluten free diet and a follow-up biopsy at the one year mark.

 

[Vera W]

On 2/2/2024 at 11:43 AM, RMJ said:

Welcome to the forum! Yes, with those results your doctor should diagnose you with celiac disease.  I’m glad your doctor thought to test for it and glad you’re already feeling better!

The difference being gluten-free is MIND-BLOWING! So happy to have answers!

Thank you so much.

Feels good to have answers and a plan to feel better!