# Celiacs don't need to live in fear

TL;DR: Less sensitive celiacs can probably have trace amounts of gluten cross contamination with low risk of health problems, since celiacs who deliberately eat non-trivial amounts of gluten [are mostly ok](https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-020-1511-6).

Celiac disease is an autoimmune condition where your immune system becomes triggered by gluten. This leads to a variety of strange effects on your body. Gastrointestinal distress symptoms (diarrhea, flatulence, irritable bowels) are the most obviously connected, but a large proportion (my guess is 30-50%[^1]) of celiac sufferers don't get these. Other common symptoms are weight loss, iron deficiency, weak bones (density loss), psoriasis (itchy skin patches) and damage to your small intestine (villous atrophy). 1-2% of people globally have celiac, though most are not diagnosed.

The universal treatment ordered is a **strict gluten free diet**. This makes sense, and for me personally was relatively easy to do given the range of options these days.

The killer is that to do it strictly you must **avoid cross contamination at all costs**. While cooking this is not too hard as long as you use separate utensils. But it means you practically cannot eat out, since you don't control the preparation.

It's difficult to classify restaurants as 'safe' or not, which severely restricts your ability to eat out. Many restaurants that are actually very careful will still tell you they can't guarantee it's gluten free. How do you know whether they are saying that because they throw spaghetti at each other, or if they just understand how hard it is to clean all contamination traces and don't want to be sued?

On the other hand, many restaurants insist they are safe, but do not know the implications of catering for celiacs. So they fry the fries in oil that has fried glutenful things, which transfers a [surprising amount](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8021893/) of gluten.

The **personal cost of this is high**. Eating out is important for convenience options and for social inclusion. [One paper](https://pubmed.ncbi.nlm.nih.gov/32172690/) notes that "GFD is very restrictive, resulting as a burden on social life and quality of life". More plainly: **it sucks**. I did it for two months but the cost was too high to accept as a rule without question - I wanted more evidence to weigh up the benefits.

But the blanket rule of "celiacs strictly avoid gluten" was black and white. There was no preformulated risk model for me to plug my parameters in - information on gluten thresholds and health impacts was not easy to come by. My gastroenterologist admitted that dose sensitivity is a thing, but said that there is still a lot of uncertainty in the science and my best move was to do the strict thing, otherwise I will have significantly higher risk of cancer (small bowel lymphoma) in 30 years. My local Facebook group was largely unimpressed with my research, with the most liked comment insisting "Coeliac is coeliac, it doesn’t vary in degrees. ... We follow Coeliac Australia’s advice which is formulated by a medical board of experts in the field. That is to avoid all gluten including cross contamination."

Given the blanket rule and threat of unlikely but extreme outcomes, how does the celiac population fare with **diet adherence? Not great** - [up to 50%](https://www.cghjournal.org/article/S1542-3565(09)00008-1/fulltext) don't manage to do it strictly. I ran a poll in the aforementioned group and 39% of celiacs said they "sometimes knowingly eat things with traces (or restaurants eg shared fryers)" (n=298).

The reason I'm writing this post is that the advice to strictly avoid cross contamination, while well meaning, in my not-medical-professional-this-is-not-medical-advice-talk-to-your-doctor opinion, is on the **wrong side of the cost benefit tradeoff** for many people, and I want to improve the quality of life for other celiacs.

The good news for most celiacs is that sensitivity to gluten does actually [vary widely](https://www.cghjournal.org/article/S1542-3565(12)01307-9/fulltext) (sorry Michelle). If you get severe reactions to tiny amounts of gluten (like the shared fryer), this sucks and you have my sympathy. But if you are on the mild side (or maybe even moderate), you can almost certainly have fries and not worry about raising your risk of cancer from [miniscule](https://seer.cancer.gov/statfacts/html/smint.html) to [small](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6297918/).

[Research](https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-020-1511-6) which evaluated celiacs for diet adherence found that out of the 8% (109) who were deliberately eating gluten (on average the equivalent of 5g of flour per day), only 23% had gluten enzyme antibodies (the main marker for celiac) and 33% had villous atrophy (small intestine damage). However a further 9% had small intestine inflammation (interestingly, this group also ate the most gluten, on average equivalent to 13g of flour per day). 

I don't recommend that people with celiac start inhaling small amounts of flour daily. There's a strong selection effect on this group - if you're deliberately eating gluten I bet your immediate symptoms aren't as bad and therefore you probably have milder celiac (although 25% of the gluten eating group did report gastrointestinal symptoms). Someone with severe sensitivity can't start eating gluten and get results as good as the 8% gluten eater group. The other caveat is this is just one paper, and while the size of the group wasn't small (109) it wasn't that big either.

Given people with (probably milder) celiac can have non-trivial amounts of gluten and be mostly fine, it's reasonable to believe that **if you're a milder celiac, you can have tiny amounts of gluten from cross contamination with low risk**.

How would you know if you're a mild celiac? I'm not well calibrated here. A good indicator is likely [blood testing](https://www.cghjournal.org/article/S1542-3565(12)01307-9/fulltext) (usually tTg-IgA). How high were your initial results when you were diagnosed? The level of small intestine damage is probably key - if you only had inflammation (no atrophy) that could suggest you're mild. But also not having obvious gastro symptoms (or only minor ones) in response to eating gluten is a good bet to indicate milder celiac. According to my second gastroenterologist (who pointed me to this research), I'm likely mild because my tTg-IgA was only 50, my small intestine had minor inflammation and my iron levels are fine (though my bones are weak).

For me, the tradeoff I'm now taking between my health and quality of life is to **not eat things with gluten ingredients, but not worry about cross contamination**. I'm getting regular blood tests to watch my tTg-IgA, and if it starts rising then I will need to re-evaluate. But so far it has continued to go down. Your mileage will vary, the human body comes with a stupendous amount of variables so your situation won't be the same as mine - but I hope this post gives you the information to make good decisions.

**Update (February 2026):** Since writing this post, several pieces of new evidence have come out that are worth flagging. My overall position hasn't changed. I still think strict cross-contamination avoidance is the wrong side of the cost-benefit tradeoff for mild celiacs. But there are important nuances I under-weighted and I'm less confident than I was before.

**1. Normal blood tests don't guarantee your gut is healthy.** The main monitoring tool for celiacs on a GFD, tTG-IgA, has [only ~50% sensitivity](https://pubmed.ncbi.nlm.nih.gov/28600100/) for detecting ongoing intestinal damage in treated patients (Silvester et al. 2017, *Gastroenterology*, meta-analysis of 26 studies). Roughly half of patients with persistent villous atrophy have completely normal blood results. In my original post I said I'd watch my tTG-IgA and re-evaluate if it rose. That's still worth doing (a positive result IS meaningful), but a negative result provides less reassurance than I implied. This matters because persistent villous atrophy carries roughly a [10-fold increased risk of complications](https://pubmed.ncbi.nlm.nih.gov/36261249/) including lymphoma (Schiepatti et al. 2023, *Gut*, n=2,211). This applies to anyone using blood tests as their safety net for a less strict approach.

**2. The "8% eating gluten and mostly fine" finding needs a caveat.** I leaned heavily on [Elli et al. 2020](https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-020-1511-6) showing that celiacs deliberately eating gluten were mostly histologically normal. A [2024 meta-analysis](https://pubmed.ncbi.nlm.nih.gov/37852764/) (Shiha, Schiepatti et al. 2024, *Gut*) of potential celiac patients (people with positive celiac markers who continued eating gluten) followed 1,010 patients across 17 studies and found that over time, **33% progressed to villous atrophy, 33% stayed stable, and 33% spontaneously lost their antibodies**. The Elli finding is a cross-sectional snapshot. The Shiha data suggests some of those "fine" patients will progress. It's not a stable equilibrium for everyone.

**3. You can now directly test your gluten exposure.** Stool GIP (gluten immunogenic peptide) testing has become commercially available since I wrote the post. A [2025 meta-analysis](https://pubmed.ncbi.nlm.nih.gov/) found 85% sensitivity and 93% specificity for detecting gluten exposure. Unlike blood tests, this measures actual gluten fragments in your stool. It tells you whether you're being exposed, not whether your immune system is reacting. If you're taking a less strict approach like mine, this is probably the single most useful test you can add. Consistently negative stool GIP gives you much stronger evidence that your exposure levels are genuinely low.

**4. The dose-response curve has been quantified.** [Rostami-Nejad et al. 2023](https://pubmed.ncbi.nlm.nih.gov/36615776/) (*Nutrients*) pooled 7 studies and modelled the risk curve: at 6 mg/day gluten, relapse risk was 0.2%; at 40 mg/day, 1.8%; at 150 mg/day, 7%. There's no absolute safe threshold, but the risk is very flat at cross-contamination levels. For context, the FAO/WHO in November 2025 established a [4 mg reference dose](https://www.fao.org/food-safety/scientific-advice/crosscutting-and-general/allergens/en/) for precautionary allergen labelling, targeting cumulative daily intake below 10 mg.

[^1]: This is a hard figure to come by, because asymptomatic people are often undiagnosed, and after diagnosis some people realise they had symptoms they thought were just normal, which itself might be hindsight bias. [This article](https://www.beyondceliac.org/research-news/risk-for-celiac-disease-overlooked-in-those-with-no-symptoms/) notes 28% of undiagnosed celiacs had no symptoms but does not provide a real citation, and [this paper](https://link.springer.com/article/10.1023/A:1021956200382) found 48% of female celiac patients did not have prominent gastro symptoms