Working my way through all the celiac screens - wondering if I can skip the endoscopy for now ...

[Scott Mengel]

Hi.  My daughter was just formally diagnosed with celiac via endoscopy (with serology beforehand).  I started down that journey as well, though have had many fewer symptoms - mostly with "arm pain"/arthalgia? in both arms, issues with cold sores, eczema in adolescence - I think that's it.  I've always been an eater of just about anything.  I'm in good shape for a 60 year old, active, eat well, etc.  I have had just about all of the celiac tests, and am awaiting an appointment with a GI doc next week to go over results and discuss next steps (to include a possible endoscopic biopsy).  My results:

• HLA-DQ2 (Celiac Panel) - present

• HLA-DQ8 (Celiac panel) - absent

• HLA-DQA1*05 (Celiac Panel) - present

• Immunoglobulin A ... 188

• TTG (Anti-Tissue Transglutaminase) IgA Quantitative  ... 12.2

• Deamidated Gliadin Peptide IgA Antibody ... 3.03

• Deamidated Gliadin Peptide IgG Antibody ... 1.36

• ENDOMYSIAL ANTIBODIES IGA ... "High degree of non-specific fluorescence observed; results indeterminate"

I am wondering what those of you with much more expertise and experience would advise as far as the endoscopy.  My "gut" right now says that I likely have celiac, that I can go gluten-free without the endoscopy, and that I can re-test some months down the road to ascertain the effects of the gluten-free diet - and perhaps wait on the endoscopy until Medicare kicks in at age 65.  

Thoughts about my results or direction moving forward?  Thanks in advance!

[trents]

You left out information that we need to understand your antibody test results. We need not only the raw scores but the ranges used by the lab to establish what is negative vs. positive. Different labs use different ranges. There is no industry standard. So, we cannot tell if any of your antibody tests were actually positive unless you give us the ranges. All we can say is that you have one, maybe two celiac gene which establishes the you have the potential for developing celiac disease but it does not mean you have it or will develop it. 40% of the population have one or more celiac genes but only about 1% or so actually develop celiac disease. It also takes a triggering stress event of some kind.

I would certainly hold off on going gluten free until you have more confirmation about whether or not you actually have celiac disease. The symptoms you describe are not common celiac symptoms so I would go forward with the endoscopy/biopsy to check for damage to the small bowel villous lining.

Edited January 18, 2024 by trents

[Scott Mengel]

Thanks for the reply.  Here are the ranges provided by the labs:

Immunoglobulin A ... 188   Normal range: 66 - 433 mg/dL

TTG (Anti-Tissue Transglutaminase) IgA Quantitative  ... 12.2.  (Normal range: below <4.0 U/mL)

Deamidated Gliadin Peptide IgA Antibody ... 3.03.  Normal range: 0.00 - 4.99 FLU

Deamidated Gliadin Peptide IgG Antibody ... 1.36. Normal range: 0.00 - 4.99 FLU

[trents]

So, you are mildly positive for the tTG-IGA and you have genetic potential for celiac disease. Being as how your symptoms are not debilitating I would go forward with the biopsy.

If you go gluten free now and decide to go for more testing later you would need to go off the gluten free diet in order to have the testing be valid.

[Wheatwacked]

On 1/17/2024 at 10:48 PM, Scott Mengel said:

My daughter was just formally diagnosed with celiac via endoscopy

On 1/17/2024 at 10:48 PM, Scott Mengel said:

Thoughts about my results or direction moving forward? 

Start her gluten free journey with your support by also going gluten free.  

A biopsy would give you a baseline of damage if it is bad enough and they look in the right places.  Joining your daughter would almost make it moot.  There are many cases of postitive serology and negative biopsy and vice versa.  It takes some 10 or more years of being told they are not Celiac before a positive diagnosis.  To don't need a positive diagnosis to yield the positive effect of GFD, but it does help to validate your decision to every one else. Gluten Free Diet is still denounced as simply a fad.

 

On 1/17/2024 at 11:23 PM, trents said:

So, you are mildly positive for the tTG-IGA and you have genetic potential for celiac disease.

kind of like "partly pregnant"

Keep in mind that gluten free processed foods are not fortified.   Vitamin and mineral deficiencies are common in Celiac Disease from the villi damage while consuming gluten; dietary deficiencies while on GFD.

Around 40% of US, Canadian, UK and Ireland adults are low in vitamin D.