Am I celiac or not?

[somethinglikeolivia]

I get so confused constantly by what constitutes an official celiac diagnosis. I’ve been told blood work alone is enough to diagnose, because biopsies are inconsistent, and it can take years for the damage to be severe enough to show in that way. I’ve also been told an endoscopy is the only way to officially say. My sister was diagnosed with type 1 diabetes in 2018. I had T1D antibodies checked (I was negative) and a celiac panel done. Both she and I presented with the same two positive celiac tests - mine were as follows:

deanimated gliadin antibody IgG - 28.2 (ref range <0.4-14.9 U/ml)

TTG Antibodies IgA - 65.9 (ref range <0.5-14.9 U/ml) 

The endocrinologist who ran these stated a biopsy was not necessary and to immediately go gluten-free (he even went so far as to tell me I needed to quit my job working in a biscuit restaurant). I did end up leaving that job for unrelated reasons and went gluten-free. A few months later I went vegan for ethical reasons (no longer the case but at the time it seemed right) and of course lost weight, cleared up my skin, and was the best I ever felt. 

A marriage, two pregnancies, and a pandemic later, I had a ton of weight gain and lots of bad symptoms like joint pain, cold sores, exhaustion, brain fog, etc. Went ahead with a endoscopy in 2022 to finally see for sure, and was told I had no intestinal damage and therefore no celiac.

I ended up being diagnosed with Rheumatoid Arthritis in 2023 based on a positive anti-CCP test and having the HLA-B27 gene w family history as well (negative RF). 
 

All of this to say, I struggle with disordered eating, so between that and the chronic autoimmune stuff it’s been emotionally distressing to not know how careful I need to be about gluten, how much it should interfere with my diet, and whether or not it is actually present. Any advice or others experiences would be very helpful! Thanks! 

[Scott Adams]

I'm unable to determine your situation--did you go gluten-free for a while before your endoscopy for celiac disease? If so, the results would not be accurate because you need to be eating lots of gluten daily for at least two weeks leading up to the procedure. Also, your strong TTG Antibodies IgA results do indicate celiac disease.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

[somethinglikeolivia]

1 minute ago, Scott Adams said:

I'm unable to determine your situation--did you go gluten-free for a while before your endoscopy for celiac disease? If so, the results would not be accurate because you need to be eating lots of gluten daily for at least two weeks leading up to the procedure. Also, your strong TTG Antibodies IgA results do indicate celiac disease.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

Thanks for the response! I was on and off gluten-free diet for several years, however I was eating lots of gluten (every single meal) for several months  directly before the endoscopy 

[Scott Adams]

If you look at the article that I shared you will notice that "The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease," so your results indicate that you very likely have celiac disease, especially if you also have symptoms while eating gluten that go away when you stop eating it (although many celiacs don't have obvious symptoms).

[somethinglikeolivia]

8 minutes ago, Scott Adams said:

If you look at the article that I shared you will notice that "The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease," so your results indicate that you very likely have celiac disease, especially if you also have symptoms while eating gluten that go away when you stop eating it (although many celiacs don't have obvious symptoms).

Okay, that makes sense - so based off of the 90% odds that it is positive, it’s worth switching to fully gluten-free? How strict do I need to be with cross-contamination, handling, etc. Is it something that can go by feel, for instance if I feel okay making my family sandwiches and handling the bread as opposed to eating it, or is it something that is causing silent damage even if I feel fine? Also, do I make it clear to my rheumatologist and other medical providers that I am celiac? Or will they veto that due to negative endoscopy? Thanks again for the help!

[trents]

Occasionally we do see anomalies where celiac antibody tests are positive but biopsies are negative, and even visa versa. Sometimes, damage to the small bowel lining is patchy and unless numerous samples are taken from various areas, the damage can be missed. So, there's that issue as well. I think in your situation, the tell-tale indicator is the difference in symptoms between when you were off gluten and when you were consuming it. 

 

[trents]

I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.

 

[somethinglikeolivia]

9 minutes ago, trents said:

I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.

 

Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! 

[N00dnutt]

The best way to determine positively is to undergo a Gastroscope. Your Endocrinologist will assess the condition of your "Villi". These tenticles are what extract the nutrient from what we ingest.

The Protein in Gluten is like acid to these tenticles.

[trents]

@N00dnutt, as OP explained earlier, she had a gastroscopy done earlier while she had been eating plenty of gluten for months. It was negative despite strong positive antibody scores.

Edited July 17 by trents

[N00dnutt]

@trents You're right, thanks for pointing that out. On @somethinglikeolivia comment regarding potential ingesting or cross contamination; there is a product marketed in Australia as "GluteGuard" which is designed for just this scenario. It is not a defence for and is not recommended for use by full-blown celiac disease but, it helps those with GI.

I'll be reading slower in future so I don't skim over the subject matter.

Cheers.

[trents]

@N00dnutt, been there, done that! Cheers!

[somethinglikeolivia]

8 hours ago, N00dnutt said:

@trents You're right, thanks for pointing that out. On @somethinglikeolivia comment regarding potential ingesting or cross contamination; there is a product marketed in Australia as "GluteGuard" which is designed for just this scenario. It is not a defence for and is not recommended for use by full-blown celiac disease but, it helps those with GI.

I'll be reading slower in future so I don't skim over the subject matter.

Cheers.

I will definitely be looking into this! Thank you so much! 

[Wheatwacked]

While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease.  Reduced 25(OH)D levels are associated with celiac disease.  In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. 

[somethinglikeolivia]

2 hours ago, Wheatwacked said:

While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease.  Reduced 25(OH)D levels are associated with celiac disease.  In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. 

Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!

[Wheatwacked]

Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean.

Are You Confused About Your Celiac Disease Lab Results?

Here is another article about the non traditional symptoms of Celiac Disease.

What Are the Symptoms of Celiac Disease?

I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level.

Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;

[somethinglikeolivia]

4 hours ago, Wheatwacked said:

Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean.

Are You Confused About Your Celiac Disease Lab Results?

Here is another article about the non traditional symptoms of Celiac Disease.

What Are the Symptoms of Celiac Disease?

I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level.

Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;

Fascinating! This was very helpful, thanks for sharing