Iron loss and potential celiac.

[ThomasA55]

Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test?

Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low. 

I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile. 

 

[trents]

Welcome to the celiac.com community, @ThomasA55!

Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?

[ThomasA55]

Essentialy no. If I eat a bunch of pizza nothing crazy happens, perhaps I feel slightly less mentally sharp, but not sure. It does seem like my joints are worse ongoingly when eating gluten ongoingly, but not acutely like if I eat pizza I'm going to feel some severe joint reaction immediately. So if I had celiac I suppose it would be considered the silent kind. 

[trents]

Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting. 

The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems.

Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).

Edited May 4 by trents

[ThomasA55]

15 minutes ago, trents said:

Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting. 

The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems.

Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).

Does my iron loss sound like celiac to you?

[trents]

Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 

[cristiana]

Just to add a quick note to this discussion, although you are as yet not anemic.

My GP told me she saw a man in her clinic a little while after my own diagnosis and she said his symptom was anemia.  She thought of me straight away, as anemia was one of two main symptoms (the other was anxiety).

My GP tested the man and he indeed did have coeliac disease!

 

Edited May 4 by cristiana

[Scott Adams]

The doctor who diagnosed me was close my age at the time, a bit older, but was just out of medical school where he was taught that celiac disease is very rare, and only around 1 in 2,500 - 5,000 people have it, and that it's mostly a childhood disease. It took us/him a few years to diagnose me, and afterwards he let me know that he had diagnosed many others with it, and I shared the new info about the stats being more like 1 in 250 (this was the mid 90's), and he started testing anyone with gastro issues.

@cristiana your story reminded me that we can have a positive influence on our doctors, and good doctors will always learn from every patient.

[Aretaeus Cappadocia]

8 hours ago, Scott Adams said:

The doctor who diagnosed me was close my age at the time, a bit older, but was just out of medical school where he was taught that celiac disease is very rare, and only around 1 in 2,500 - 5,000 people have it, and that it's mostly a childhood disease. It took us/him a few years to diagnose me, and afterwards he let me know that he had diagnosed many others with it, and I shared the new info about the stats being more like 1 in 250 (this was the mid 90's), and he started testing anyone with gastro issues.

@cristiana your story reminded me that we can have a positive influence on our doctors, and good doctors will always learn from every patient.

I'm willing to bet a sound medical-economic case could be made for population wide celiac antibody screening once or twice in a lifetime, maybe something like as part of the starting school physical and maybe at age 30. These are just guesses as to when - a series of pilot studies could validate the idea and zero in on the optimal schedule. The test itself is minimally invasive and essentially zero risk, cost would be modest, and a lot of suffering and serious health damage could be averted. (As a side benefit to us, the current celiacs, there would be a lot more people diagnosed and finding ways to make the adjustments we currently make)

[Scott Adams]

I agree that there is a strong case for studying broader celiac screening, especially because so many people remain undiagnosed for years while accumulating medical visits, nutrient deficiencies, bone problems, fertility issues, neurological symptoms, and other complications.

Italy is already moving in this direction: its 2023 national law created a pediatric screening program for both celiac disease and type 1 diabetes, with the goal of identifying children before years of symptoms or complications develop. In a single-payer or national health system, that kind of early detection may be especially attractive because the same system that pays for screening may also avoid later costs from missed diagnoses. The exact timing and frequency would need pilot studies, as you suggest, but a low-risk blood test at key ages could potentially spare many people years of unnecessary suffering while also making celiac disease more visible, better understood, and easier for all of us to manage socially.

[ThomasA55]

Supposedly I am risk free genetically! So maybe my iron loss was due to drinking milk when I eat my meat affecting absorption or just random noise. Joints may just be some general food sensitivity type thing or NCGS. I think celiac is now highly unlikely. 

I don’t have any of the following alleles: HLA-DQA105, HLA-DQB102, HLA-DQB103:02, HLA-DQA102, HLA-DQA1*03, or other HLA-DQB1 alleles tested, meaning I do not have HLA-DQ2.5, HLA-DQ8, HLA-DQ2.2, or associated trans configurations to celiac

[trents]

"Risk free genetically"? Very low risk, actually. But, we are still learning about the genetics of celiac disease.

Speaking of milk, some studies show that CMP (Cow's Milk Protein) can damage the small bowel villi like celiac disease does.

Also, some meds (NSAIDS, Olmesartan - a blood pressure med) and some infections can also blunt SB villi.

[Scott Adams]

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