Seronegative celiac vs gluten intolerance?

[Rachel SA]

Hi everyone 

I would really appreciate your feedback or expertise. I’ve been ill for a few years with gastrointestinal symptoms. I was diagnosed with osteoporosis in my early twenties following a spinal fracture (I am now 40). I test positive for the celiac gene HLA DQ2. I have had 2 colonoscopies in the last 2 years due to chronic colitis and associated digestive problems. No villous atrophy in biopsy but there are indications of chronic inflammation. I have responded to a strict gluten free diet but am still recovering. My gastroenterologist says possibly the start of celiac. But because the antibodies tested negative it’s not a clear black and white diagnosis. I don’t know if my symptoms are severe enough to warrant a diagnosis of celiac?  And perhaps a severe gluten intolerance is more appropriate? I cant find enough information on seronegative celiac but was wondering if anyone had other information. I have been sick for years and am trying to find an understanding. 
 

Many thanks

Rachel 

[knitty kitty]

Welcome to the forum, @Rachel SA!

It's more likely Celiac Disease if you know you have that one celiac disease gene.  People with Non Celiac Gluten Sensitivity do not have Celiac genes.  

Chronic inflammation can be a sign of early celiac disease.

Not consuming sufficient gluten ahead of testing can give ambiguous results on blood tests and biopsy.  (*see below)

Anemia, diabetes and Thiamine deficiency can affect anti gluten antibody production.  Some people with Celiac are seronegative but have Celiac Disease just the same.  

Osteoporosis may be linked to autoimmune diseases.

https://www.healthline.com/health/is-osteoporosis-an-autoimmune-disease

Hope this helps!

 

*Guidelines for Gluten Challenge:

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."
Keep us posted on your progress!

[Scott Adams]

I believe that this may not be correct: "People with Non Celiac Gluten Sensitivity do not have Celiac genes." I believe that both people with and without celiac genetic markers can have NCGS.

@Rachel SA, did have an endoscopy for celiac disease? A colonoscopy is different, and doesn't look for celiac disease. Perhaps they did both? If you did a colonoscopy, do you have those results, and can you share them with us? Likewise, please share your blood test results along with the reference ranges if possible, as your test results may provide more clues.

You can still have celiac disease with negative blood test results, although it's not very common: 

Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/ 

Seronegative Celiac Disease - A Challenging Case:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/ 

Enteropathies with villous atrophy but negative coeliac serology in adults: current issues:
https://pubmed.ncbi.nlm.nih.gov/34764141/ 

 

[trents]

Rachel SA, the term "gluten intolerance" is generally used in the context of celiac disease. The term "gluten sensitivity" is generally used in the context of NCGS (Non Celiac Gluten Sensitivity).

[knitty kitty]

celiac disease has to be ruled out before a diagnosis of NCGS can be made.  

If there are no genes for celiac disease, it's NCGS.  If there are genes for Celiac, it's Celiac.  

 

"Non-celiac gluten sensitivity (NCGS) or commonly known as gluten sensitivity is defined as “a clinical syndrome caused by the gluten ingestion resulting in intestinal and/or extraintestinal symptoms that alleviate once the gluten-containing food is removed from the diet, NCGS is a diagnosis of exclusion after excluding celiac disease and wheat allergy” [1]."

Diagnostic Dilemma, Possible Non-celiac Gluten Sensitivity: Consideration in Approach and Management

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9236635/

 

And...

 

"NCGS is characterized by the triggering of intestinal and/or extraintestinal symptoms after the consumption of products made with gluten-containing cereals, but both celiac disease and WA must be properly ruled out as the symptoms overlap among the clinical entities and there is a lack of sensible and specific biomarkers for NCGS diagnosis."

Non-Celiac Gluten Sensitivity: An Update

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8224613/

 

[Scott Adams]

Having celiac disease genes does not rule out the possibility of having non-celiac gluten sensitivity (NCGS). Celiac disease is an autoimmune disorder triggered by gluten consumption in genetically predisposed individuals. It involves an immune response that damages the small intestine.

On the other hand, non-celiac gluten sensitivity refers to a condition where individuals experience symptoms similar to those of celiac disease when consuming gluten-containing foods, but without the characteristic immune response and intestinal damage seen in celiac disease.

Both celiac disease and non-celiac gluten sensitivity can share similar symptoms such as gastrointestinal discomfort, fatigue, and headaches. However, they are distinct conditions with different underlying mechanisms. It is possible for someone to have celiac disease genes and experience non-celiac gluten sensitivity symptoms, but it would require a thorough medical evaluation and testing to differentiate between the two conditions.

The links you posted do not refute this.

 

[Rachel SA]

Thank you so much for your interest and discussion. I really didn’t expect so much care or investment from complete strangers ☺️. I will read through all the links and perhaps its NCGS but I should live like someone with celiac to protect myself from accidental contamination (which kept happening in the past). I am happy to share my blood results and biopsy report. Maybe there will be some insights from this.

No wheat allergy, no anaemia. Thiamine is Vitamin B1? I don’t know if I was tested for that. But Vitamin B12 was normal. I was originally tested for the antibodies in 2021 (first gastroscopy and colonoscopy) and it’s possible I wasn’t eating enough wheat at the time of testing. I can’t remember. I wasn’t retested in 2023 (second gastroscope and colonoscopy). But I am too scared to do the test again now because of the repercussions. 

I am not sure how to send through the reports, but I will figure it out. Thank you so much for all your help and input 😊. Will send through shortly 

[trents]

Yes, thiamine is B1. Common blood tests are not always helpful in pinpointing vitamin deficiencies as they only measure the amounts floating around in the blood which is the transport system. They do not measure the uptake into cells and tissues. But there are other tests that do that and symptoms are also a good measure.

Edited April 5, 2024 by trents