Stigma and the impact on people with chronic illnesses

I have a new thing, and I didn’t want to talk about it. In part, because of stigma. Mostly, because of stigma.

Stigma has played a huge role in how I have responded to my own chronic autoimmune diseases for almost 20 years, in fact. I’m incredibly disappointed that not much has changed in all this time.

When I was diagnosed with type 1 diabetes almost 20 years ago, I was very aware of the stigma against people with any type of diabetes. I grew up in Alabama. People with diabetes were perceived by society to be lazy, out of control of their own behaviors, and any complications or outcomes were their own fault.

It wasn’t – and isn’t – their fault. The tools and technologies (not much technology then) did not give people a chance at good or great outcomes. The tools and technologies failed people. Yet, people and their behaviors were and often still are blamed, shamed, and treated poorly in society and in medicine and the healthcare system.

The first day I was diagnosed and sent from my primary care doctor’s office to the pediatric endocrinologist, I was scared. Diabetes in society was presented to me as amputations and kidney disease and other not so great things. I didn’t know anyone with type 1 diabetes. And when the pediatric endo came into the room for the first time and said, “Don’t worry. We can get you an insulin pump, it’ll be great!” my reaction was: absolutely not. An insulin pump will be a visible label that I have diabetes. Instead of a chance of being blamed, shamed, and treated badly – I will almost certainly be labeled, blamed, shamed, and treated badly. No, thanks.

And so I didn’t get on a pump (at first). It wasn’t until I realized that a pump would give me freedom, to sleep in and not have to wake up and eat a pre-allotted amount and take insulin, that I decided the personal freedom was worth the labeling, dirty looks, blame, shame, and negative treatment.

And I regret it. I regret how stigma shaped my reaction to possible tools and technology that would aid me. I’ve strived ever since to not let that factor into my choices.

But last week, I realized stigma was still playing a role. I have a new thing, and I rationalized my choice not to blog about it because it’s a well-known thing, and as a newbie, surely I didn’t have anything to add to the public discourse about this thing. Information is available about this new thing, and I wouldn’t be adding anything new. What did I have to say that hasn’t been said before about this common topic?

But after a few days, I realized my decision to not blog about my experience was also driven by stigma and fear of how I’ll be treated when I share publicly that I have YetAnotherThing on my list of things I’m managing. It’s an autoimmune thing, again. It’s not “my fault”. It’s not at all in my control.

Because my immune system is too strong for my body to handle, I have not one, not two, but now three autoimmune things. (And 4 things total, but exocrine pancreatic insufficiency is possibly not an autoimmune thing so I leave it off the list even though it’s on my overall list of things I’m managing.)

Like people with physical or visible disabilities, having a chronic disease and talking about it publicly gives people the feeling that they can publicly shame and blame me “for my own good”. Or hypothesize on what I’ve “done wrong” to get to this point. Or to “suggest” things I can do to better manage. Often, these things are scientifically wrong. (Note: this is why ‘cinnamon’ is a joke for people with type 1 diabetes. There is no cure or treatment for type 1 diabetes other than taking insulin for the rest of our lives. Cinnamon does not cure diabetes, yet it and other things are presented to people with diabetes as “alternative” methods that would in fact, kill me if I relied upon those and stopped taking insulin.)

I dislike this. I dislike the fact that being open about what I’m dealing with, in order to possibly help other people also dealing with the same thing or identifying gaps in the healthcare system, invites judgment and all of this commentary. Let me be clear: I do not invite that. Ever. Not now, not in the future. Not about diabetes, not about celiac, not about exocrine pancreatic insufficiency, and not about my new thing. I’ve noticed more and more other advocates writing in their tweet threads or their blog posts “This is not soliciting advice or suggestions”, because so often we ARE bombarded with “advice” or “suggestions” that are unsolicited, and like I mentioned above, possibly dangerous if not outright deadly.

I don’t have answers. I can’t fix the stigma in society. The best I can do is perhaps write about it and talk about it and help shine a light on the fact that it 100% does impact people. It prevents other people from seeking healthcare when they need it. It prevents people from sharing and processing their feelings, or reaching out for help when they need it. It causes harm. And we all need to do better as a society.

So I am sighing a lot, and writing this blog post first so I can process my feelings that are blocking me from writing the next blog post. The one with scientific information and citations as well as an articulation of my experience and situation, in hopes that one day someone on page 18 of a search engine will find it when they need it. It’s not for everyone.

But as always, I think that if it eventually helps one person, then it’ll be worth it. It’ll be worth the stigmatizing response that some people will have now and in the future when they realize I am someone living with multiple autoimmune diseases. I hope. It’s always my hope. I’ve had this tagline on my email ever since I first had email, and I still believe it’s true today which is why I wrote this blog post and am now turning to writing the next one:

“Doing something for someone else is more important than anything you would do for yourself.”

Graves’ Disease, Subclinical Hyperthyroidism, and Everything I Have Learned About It (So Far)

TLDR: I have newly diagnosed Graves’ Disease, I have associated eye stuff (called “Graves’ orbitopathy” or “Graves’ ophthalmopathy” or “thyroid eye disease”), subclinical hyperthyroidism, and a new learning curve. Below is what I’ve learned so far and what I’m still exploring.

As a person with type 1 diabetes (T1D) – which is an autoimmune disease – I am screened yearly for various high-risk related conditions. For example, celiac disease and thyroid issues, because those are fairly common in people with type 1 diabetes. I already have celiac disease (developed ~6 years after I developed T1D), but we have continued to screen every year in my annual blood work for thyroid markers, usually by screening T4 and TSH. Occasionally, T3 and/or TPO antibodies are also screened.

I remember vividly the chortle that my prior endocrinologist made after we diagnosed my celiac disease in college, probably in response to my comment about being frustrated of having “another” thing to deal with in addition to T1D. He chortled and said something like “once you have one (autoimmune thing), you’re likely to have two. Once you have two, you’ll be likely to have three.”

I didn’t like it at the time, and I don’t like it now. However, he’s not wrong. When your immune system has a little extra kick in it and you develop one autoimmune disease, the rates of having another autoimmune thing are increased. Thus, the typical yearly screening in T1D for celiac & thyroid.

I went 6 years between T1D and celiac, then almost 12-13 years to discover I now have exocrine pancreatic insufficiency (EPI). That’s not necessarily an autoimmune thing but may be a side effect of long-term T1D. Regardless, I was still thankful for the long period of time between T1D and celiac, then T1D+celiac and EPI. I was assuming that something else was coming eventually, but that I’d likely have a few years before the shoe dropped.

Nope.

I wasn’t terribly surprised when I scheduled my annual endocrinology appointment and did my annual blood work to find that one of my thyroid values was off. Specifically, my TSH (thyroid stimulating hormone) was low / below normal range. However, my T4 was smack dab in the middle of normal range. I got my blood work back Tuesday and waited for my virtual appointment on Friday to discuss in detail with my endocrinologist.

Since I’m me, I was curious about the interplay between normal thyroid levels (T4, and I suspected my T3 was likely still in range) but a low TSH value. What did that mean? General consensus seems to define this as “subclinical hyperthyroidism”. It’s not always treated, unless you are older (>65), have osteoporosis or heart disease, or TSH levels are <0.1.

I’m <65, don’t (as far as I know) have osteoporosis or heart disease, and my TSH levels are between 0.1 and 0.4, which is the low end of the normal range. So general treatment guidelines (see this example from the AAFP) suggest treatment isn’t necessarily warranted.

However…there’s more information that factors into the decision making. First, I had my last annual eye exam in October. All was well. Yet in November, I developed really gritty, dry eyes and went in for an appointment. I was diagnosed with dry eyes (gee, thanks!) and recommended to use gel drops at night before bed and regular eye drops during the day as needed. I did end up needing eye drops several times every day.

Then at the end of December or early January, we realized I had exocrine pancreatic insufficiency (EPI). I had been wondering if my dry eyes was related to the lack of digestion and absorption of nutrients, which also influences how my body uses the water content from food. It did seem to get a little better in the following months, because while I still needed the eye gel at night, I eventually moved to several days a week where I didn’t seem to need the eye drops during the day – yay!

However, in February and early March, I started to physically notice a shift in my resting overnight heart rate (HR). My Pebble 2+ HR watch and my Oura ring, both of which measure HR and heart rate variability (HRV), confirmed that both metrics were getting worse. I had a slowly increasing overnight HR and associated decrease in HRV. I am used to fluctuations, because the intensity of my ultrarunning can also influence HR the next day as a signal for whether my body has recovered yet or not. But instead of a day or two of increased numbers, I had an increasing trend line over several weeks, and it started to physically become bothersome. I actually raised the idea of getting my thyroid blood work done early this year, and was about to request the lab work, when after ~6 weeks or so the trend seemed to reverse and things (HR-wise) went back to “normal” for me.

Then I broke my toe in July and the same thing happened, but I chalked it up to sleep disruption from the pain and recovering from the fracture. My HR was continuing to rise even as the pain subsided and my toe was clearly healing. And looking back at my HR data, I can see it actually started to rise at the beginning of July, about two weeks before I broke my toe, so it’s not solely influenced by my broken toe.

As a result of these HR increases (that are noticeable and bothersome because I’m also not sleeping well at night and I physically feel the higher HR during the day), and the ongoing dry/gritty eyes, I suspected that the cause of my “subclinical hyperthyroidism” was Graves’ disease.

I’ve seen estimates that ~30% of people with Graves’ disease have what is called “Graves’ orbitopathy” (and other estimates suggest 20-50%, like this one), so the combination of my ongoing eye symptoms and the low TSH suggested that further lab work assessing various thyroid antibody levels would be able to confirm whether Graves’ disease was the likely source of the subclinical hyperthyroidism.

Therefore, I wasn’t surprised during my virtual visit that my endocrinologist ordered additional labs (repeat of T4 and TSH; adding in T3, TPO antibodies, and TSI (Thyroid Stimulating Immunoglobulin), Thyrotropin Receptor Ab, and Thyroglobulin Ab). Treatment plan, if any, would be based on these results.

I managed to get in that (Friday) afternoon for the repeat lab work, and my results started trickling in by the time I woke up Saturday morning. First, T3, T4, TPO, and TSH came back. T4 was still normal; as I expected, T3 was also normal. TPO antibodies were high, as expected, TSH was still low, as I expected. Saturday night, Thyroglobulin Ab came back high, as expected. Monday, TSI came back high, as expected. Tuesday, my last test result of Thyrotropin Receptor Ab came back, also high as expected.

The summary was: all antibodies high; TSH low; T3/T4 normal.

My endocrinologist messages me Tuesday afternoon confirming mild Graves’ disease with subclinical hyperthyroidism.

The challenge is that I have normal T3/T4 levels. If those were high, we’d treat based on those levels and use those levels coming back into normal range and any change in antibody levels to assess that things were going well.

But the guidelines for subclinical hyperthyroidism don’t really indicate treatment (except on an individual level based on age, other conditions, or undetectable TSH <0.1, as I mentioned).

However, from what I’ve read, the “eye stuff” seems to be driven not by thyroid levels but by the presence of the increased thyroid antibodies. Treatment would possibly bring down the thyroid antibody levels, which might help with the eye disease progression. But not a guarantee. So my doctor left it up to me to decide whether to treat it or not.

Given the ongoing presence of active eye disease (I haven’t been able to wear my contacts for two weeks right now due to swelling/pain in the eyes, plus itching and redness), and the bothersome heart rate feeling, I have decided to try antithyroid medication. I’ll be on a relatively low dose of an “antithyroid” drug, again with the goal of trying to reduce my antibody levels.

This is why I ended up deciding to write this blog post after all: I have not been able to find any clear treatment guidelines for subclinical hyperthyroidism and Graves’ disease with active eye symptoms (from Graves’ orbitopathy). The literature does suggest that treatment to reduce thyroid antibodies even with in-range T3 and T4, targeting a return to normal TSH levels, may be helpful in reducing Graves’ orbitopathy symptoms. This isn’t well known/established enough to have been documented in treatment guidelines, but does seem to occur in many people who are treated.

So hopefully, anyone else with low TSH and high antibodies suggesting Graves’ disease but normal T3 and T4 levels that suggests subclinical hyperthyroidism and also has other symptoms (whether that’s heart rate or other common hyperthyroid symptoms like increased sweating, shaking, heart palpitations, heat intolerance, sleep disturbances) that are bothersome, now have an example of what I chose, given my situation as described above.

I also thought sharing my question list at different stages for my endocrinologist would be helpful. After I saw that I had low TSH and in range T4, and suspected this meant I had subclinical hyperthyroidism from Graves’ disease, given my eye symptoms, the questions I asked my endocrinologist were:

  • What additional lab work did we need to confirm subclinical hyperthyroidism and Graves’ disease as the cause? What additional information or lab work would give us a treatment plan?As expected, he repeated TSH and T4, added T3 and TPO and the other antibody tests described above: TGAb, TRab, TSI. This would confirm subclinical hyperthyroidism and Graves’ as the likely source.

     

  • Do I need treatment, since the guidelines generally don’t suggest treatment with normal T3/T4 and TSH between .1 and .4?Initially he suggested treatment would be an option, and after the repeat and expanded lab work, left it up to my decision. Given my symptoms that are actively bothering me, I’m choosing to try low-dose antithyroid medication.
  • For hyperthyroidism treatment, beta blockers seem to be part of treatment guidelines for managing symptoms in the short-term, since it takes ~6 weeks for antithyroid medication to show up in lab results. Were beta blockers warranted in my case?My endo typically doesn’t like to prescribe beta blockers unless there are extreme symptoms. He gave an example of someone with a T4 (I think) around 10 and extreme visible shaking. He left it up to me, but his opinion was the side effects, such as lethargy, would outweigh the benefits for mild symptoms, so it is better to treat the root cause. I agreed and did not ask for a beta blocker prescription.
  • I also asked if a DEXA scan was warranted to check my bone density.I haven’t had one in over a decade, and celiac and EPI and now Graves’ puts me at possible higher risk of bone density issues. And, since the presence of osteoporosis changes the treatment recommendation for subclinical hyperthyroidism, we agreed it was worth doing. I have it scheduled in a few weeks. My last one over a decade ago was normal.
  • Finally, I asked about my eye care, now that I have a known eye thing (Graves’ orbitopathy). Do I need to get referred to an ophthalmologist, or can I continue to see my existing optometrist for annual eye care (including diabetes eye exam) and contact fittings?My endocrinologist suggested that my optometrist can continue to manage my eye care, unless something changes significantly. Ophthalmologists, based on his response and my research, seem to handle severe eye disease treatments that aren’t likely warranted for me. I’ll probably need supportive eye care (e.g. gel drops, regular eye drops) for now. However, I’m planning to send a note to my eye doctor and flag that I want to talk about Graves’ eye things and a plan for monitoring severity and progression over time, and check whether she’s comfortable supporting me or if she prefers to refer me to someone else. 


After my repeat labs came back, my endocrinologist messaged me to confirm things and ask if I wanted him to send in the prescription as previously discussed. This exchanged answered the additional questions I had at this time:

  • What is the treatment timeline? How soon might I see results?He suggested repeat labs at the 2 month mark. Ideally, we’d see reduced antibody levels and my hope is that my eye symptoms will have also improved and/or I won’t have any additional weeks without being able to wear contacts.

    Given I have a clear impact to my heart rate, I’m hypothesizing that I might see changes to the trend in my heart rate data sooner than 6 weeks – 2 months, so that’ll be interesting to track!

     

  • Side effects?Common side effects with antithyroid drugs are rash/allergic type response, headache, or agranulocytosis. He told me to discontinue and contact the office if I had any of those symptoms.

    He didn’t go into detail, but I’ve read about agranulocytosis and it seems like if you have a fever and strong sore throat, you need to discontinue and probably will have blood work ordered to make sure your white blood cell counts are ok. Don’t google too much on this one as it sounds scary, but it’s also rare – less than 2% of people seem to have this.

     

  • The only question he didn’t answer was whether it makes a difference in efficacy to take the antithyroid drugs at night or in the morning.Probably, the answer is it doesn’t matter, and whatever time you can take it consistently is best. However, I want to optimize and get the best results from taking this, so I’m bummed that there doesn’t seem to be any evidence (let me know if you’ve found anything in medical literature) suggesting how to optimize timing of it. 

So that’s where I am today.

I now have type 1 diabetes, celiac disease, exocrine pancreatic insufficiency, and Graves’ disease (contributing to subclinical hyperthyroidism). It’s possible that we can fix the subclinical hyperthyroidism, and that I won’t need to be on antithyroid medication long-term. However, the data for those of us with Graves’ orbitopathy isn’t super optimistic compared to those without Graves’ eye disease; so I am managing my expectations that managing my thyroid antibody and hormone levels will be an ongoing thing that I get to do along with managing insulin and blood sugars and managing pancreatic enzymes. We’ll see!

The multivariable equation that is running with type 1 diabetes, celiac disease, and exocrine pancreatic insufficiency

I’ve written in the past about running with type 1 diabetes. I’ve tried running fasted, which works well in one sense because I have no extra insulin on board. I’ve modified my strategy further to run 2 or more hours after breakfast, so I have fuel but don’t have (much) IOB. But as I’ve extended my forays deeper into longer distance ultrarunning, and as I learned I have exocrine pancreatic insufficiency (EPI), running is getting a little more complicated.

For past thoughts on T1D running, here’s my post on running fasted and thinking about IOB. I also wrote more here last year about marathon and 50k ultramarathon training and how I use small doses of carbs to “correct” for dipping blood sugars. Last year, my body didn’t seem to need or want much additional fuel, so I didn’t force it. Part of that was likely a symptom of my undiscovered EPI. Now, however, that I am taking enzymes for pancreatic enzyme replacement therapy so I can digest what I eat, I have more energy (because my body is actually using what I eat), but I also get hungry and seem to need more fuel while running. But everything I eat needs enzymes to help me digest it, even things that I eat while ultrarunning.

So…it’s complicated to run with type 1 diabetes and micromanage insulin and carbs to manage blood glucose levels; and I’m limited in my fuel choices because I have celiac disease; and now I have to also carry, titrate, and dose enzymes for any fuel that I eat on the run as well.

Oh, and like insulin, the timing of enzymes matters. But there are no studies on enzyme digestion and how that changes during exercise, let along endurance activities like ultrarunning. So I am running in the dark, so to speak, trying to figure out things myself as I go along.

Here is more detail about what I’m doing and why I’m constantly running multivariable equations in my head while training for a 50k, 50 mile, and maybe even 100 mile run later this year:

First and foremost, managing blood sugar levels comes first.

I wear a CGM, so I can see how my blood sugar (BG) is changing during the run. I have a pump, so I can make any changes to insulin dosing. I also have an open source AID system (OpenAPS), so before running I set a higher target which tells the system not to give me as much insulin as it would otherwise. (It also does an awesome job with post-run insulin sensitivity changes! But that’s another post.) As I’ve previously written about, reducing insulin on board (IOB) when I know I’ll be running is the important first step, so I don’t have to start taking carbs and treating a low at the start of my run. Usually, my open source AID and I (by giving it a temporary target) do a good job getting me to my run start without much IOB, and ideally somewhere around 120-130 mg/dL.

From that level area, I can see rises and dips in BGs and dose accordingly. I carry easily dissolving small mint-like candies that are a few carbs (3-4g), or Airhead minis (8g of carbs), and with any dip below 120 or recurring drop that’s not coming up after 15 minutes since my last carb, I take more. These are pretty much straight sugar, and my body seems to do ok with absorbing carbs without enzymes, as long as there is no fat or protein involved.

However, with ultrarunning it’s generally considered to be ideal to proactively be consuming fuel to balance out the energy that you’re burning. Again, this is where I’m less experienced because for the last years, my body never wanted fuel and I did ok. However, now I seem to need fuel, so I’m working on figuring this out because food typically has some fat and protein, and I have to dose enzymes for it.

I carry a baggy with some single-enzyme (lipase) pills and some multi-enzyme (lipase for fat, amylase for carbs, and protease for protein) pills. I carry carefully measured single-serving snacks that I know the fat and protein quantity of. For each snack, I might need 1-2 enzyme pills of various sorts.

Timing matters: I can’t take enzymes and then snack slowly for 30 minutes. To eat slowly, I would need to take enzymes every 10-15 minutes to match the speed of eating so it will ultimately be there to help the food digest.

But, more carbs/food at once has an effect on how I feel while running and also to my BGs. I’ve tried to find things I love to eat running and can eat within 5 minutes – even while running 30 seconds and walking 60 seconds repeatedly – that are also less than 1-2 enzyme pills worth of fat and protein and aren’t too many carbs at once. These may be 15-20g carb snacks which means a bigger impact to my BG levels, and I may need to even do a small bolus (give insulin) for what I am eating. The challenge again is that food can hit BGs in about 15 minutes but it takes ~45 minutes for insulin activity to peak. And, during exercise, I’m more sensitive to insulin than I normally am. There’s no magical calculation to know how much “more” sensitive I am in the midst of a run, so I have to guess and thread the needle between not giving too much insulin that would cause a low BG but giving enough so I don’t spike above 180 mg/dL, which is what makes me feel icky while running.

Preferably, and very personally, I’d like to float up and down between 120-140 mg/dL or 130-150 mg/dL, which is higher than BGs usually hang out for me without exercise (remember: open source AID!), but is high enough that I have buffer against a low, so if I suddenly dip and I haven’t looked at my BGs in 15 minutes, I can usually still carb up and prevent an annoying low. (Lows matter even more on runs because they slow me down physically, which is usually not what I’m going for.)

It doesn’t always work that way. Sometimes I undershoot the insulin because I’ve miscalculated my effort running, and my BG drifts high and I have to decide whether or not to correct further. Other times, I overshoot (or have increased my run effort and didn’t take that into consideration) and cause BG to dip or dive toward low. Then I have to carb up but hopefully not so much that I cause a high.

My priority list therefore is: manage BGs, take in fuel, try not to over or undershoot on insulin for the fuel or overshoot carb corrections for drifting BGs, plus remember to take enzymes for the fuel and dose the right amount, plus stay on top of my electrolytes. Oh, and keep run-walking.

And along the way, I am also trying to document and learn whether the absorption of enzymes changes during different intensities or lengths of exercise; whether these over the counter enzymes are reliably measured enough for small snacks, and whether my personal ratios for fat and protein are any different during exercise the way my sensitivity to insulin changes during exercise.

It’s a lot of work. Plus, the pre-work that goes in to finding, measuring, and preparing foods that I think I want to eat during the run!

My current short list of single-serving snacks that I can tolerate while doing long runs includes: 8 gluten free peanut butter pretzel nuggets; 1 serving of chili cheese Fritos; 6 gluten free yogurt covered pretzels; and 1 gluten free stroopwaffle. Each of those is 15-20g of carb, 1-2 enzyme pills, and some of them have a bit of sodium. (I’m also fairly sensitive to sodium so I take electrolyte pills every 30-45 minutes while racing, but I’ve realized the extra fueling with a bit of sodium makes it so I don’t have to take the electrolyte pills every 30 minutes like I used to.)

When I build up to my longer (50 mile or maybe 100 mile ultras, if I get there!) runs, I’m also going to need additional “real food” options, as I doubt I will be able to or want to eat stroopwaffle and Fritos for as long as the run will take. This is just a theoretical list, but it includes tomato soup (sodium and warm liquid!), instant mashed potatoes (soft and not much chewing involved), grits and oatmeal (not together, but same reason as mashed potatoes). These all luckily also happen to be lower in fat and protein, which means easier to digest (in theory), and I am less likely to have better error margins against getting the enzyme dosing wrong given the small amounts of fat and protein.

What it comes down to is that running with type 1 diabetes is a giant constant personal science experiment. Celiac makes it more work, but also removes some of the variables by limiting what I can to eat: as at races I can’t eat out of any open bowl or package due to cross contamination concerns, and reading packages takes time, so it’s way safer to just eat what I bring myself. Having EPI on top of that means mastering the art of digesting food with pancreatic enzyme replacement therapy, which is its own special form of science experiment.

There’s a lot of variables, a lot of science, and a lot of learning going on every time I go for a run. Doesn’t it sound fun?!


(PS – If you’re someone with EPI who has some experience with endurance activity and changes to dosing enzymes..or find that it doesn’t change anything…please reach out! I’d love to chat and take my knowledge base from n=1 to n=2!)

Multivariable Equations: Running with Type 1 diabetes, celiac disease, and Exocrine Pancreatic Insufficiency

Peer pressure during and “after” the COVID-19 pandemic, why it’s similar to living with celiac disease or food allergies, and a reminder that we usually have choices

Imagine that you are invited to go out to eat with a group of friends, or with colleagues at a conference.

Your mind races.

You start to think through the venue and if it’s safe for you to go. What the experience will be like at the venue. What the short-term risks are over the next few days. What the long-term risks are for you and your health, because what you choose to do will potentially influence your health for years to come.

Maybe you shouldn’t, or don’t want to go.

Given the venue, you realize that you can make choices for yourself to make it safer for you, regardless of what anyone else does. You can choose to go, but you can also do things differently than everyone else. But there’s a cost. There’s a short term cost of being the “different” one at the table.

So what do you choose? Do you cave to social pressure, and “just do what everyone else is doing”, because you think the risk of short term costs isn’t a big deal, and you don’t worry about the long-term costs to your health? Or do you decide to do something different, either not going, or doing something different at the venue than everyone else? Or do you decide to suggest an alternative?

For those of us who are reading this in 2022 or beyond, we may read the above scenario and think primarily about COVID-19 risk factors and mitigations.

But for those of us living with celiac disease (or food allergies or other significant dietary restrictions), the above scenario is one we lived with even prior to 2019 and COVID.

Here’s how this scenario could read specifically for COVID-19, with COVID-specifics bolded:

Imagine that you are invited to go out to eat with a group of friends, or with colleagues at a conference.

Your mind races.

You start to think through the venue and if it’s safe for you to go. What will the experience be like at the venue: Is it indoor or outdoor? What is the ventilation like? Is everyone in your group vaccinated and boosted? What the short-term risks are over the next few days: If you get COVID-19, how will that impact your schedule/life/childcare etc? How at risk are you for hospitalization with COVID-19? What the long-term risks are for you and your health, because what you choose to do will potentially influence your health for years to come: Are you concerned about “long COVID” or associated conditions? What are the risks that a COVID infection would make your personal health situation worse?

Maybe you shouldn’t, or don’t want to go.

Given the venue, you realize that you can make choices for yourself to make it safer for you, regardless of what anyone else does. You can choose to go, but you can also do things differently than everyone else. But there’s a cost. There’s a short term cost of being the “different” one at the table. You could go, but wear an N95 mask and only take off your mask to quickly eat or drink. Or you could go and mask, but not eat. Or you could bring a CO2 meter to evaluate the ventilation, and use that to decide.

So what do you choose? Do you cave to social pressure, and “just do what everyone else is doing”, because you think the risk of short term costs isn’t a big deal, and you don’t worry about the long-term costs to your health? Or do you decide to do something different, either not going, or doing something different (e.g. N95 masking, and/or not eating) at the venue than everyone else? Or do you decide to suggest an alternative, such as picking an outdoor venue instead of indoors, or choosing an activity that doesn’t involve close proximity and eating or drinking, such as a walk?

Now consider how this scenario could read specifically for someone with celiac disease (or food allergies or food restrictions), with those specifics bolded (in a pre-pandemic life):

Imagine that you are invited to go out to eat with a group of friends, or with colleagues at a conference.

Your mind races.

You start to think through the venue and if it’s safe for you to go. What will the experience be like at the venue: Do they have a gluten free menu? Do they indicate that they have cross-contamination practices in place for making the food gluten free? Does the menu even have food that is worth eating? What the short-term risks are over the next few days: If you get glutened and are someone who is symptomatic, how will the minutes, hours, and days following of not feeling well influence your schedule/life/childcare etc? What will you not be able to do because you won’t feel well enough? What the long-term risks are for you and your health, because what you choose to do will potentially influence your health for years to come: Some people with celiac disease aren’t symptomatic, but are causing damage even if they don’t feel it in the minutes/hours/days following. Eating gluten causes the immune system to attack the body, increasing the risk for cancer and other complications.

Maybe you shouldn’t, or don’t want to go.

Given the venue, you realize that you can make choices for yourself to make it safer for you, regardless of what anyone else does. You can choose to go, but you can also do things differently than everyone else. But there’s a cost. There’s a short term cost of being the “different” one at the table. You could go, but not eat if there’s not food worth eating or if you determine (in advance or at the restaurant) that they doesn’t have safe practices for preventing cross-contamination. You could go, but bring your own food and do your own thing.

So what do you choose? Do you cave to social pressure, and “just do what everyone else is doing”, because you think the risk of short term costs isn’t a big deal, and you don’t worry about the long-term costs to your health? Or do you decide to do something different, either not going, or doing something different (e.g. not eating, or bringing your own food) at the venue than everyone else? Or do you decide to suggest an alternative, such as recommending a different venue that has safer gluten free options, or choosing an activity that doesn’t involve eating, such as a walk?

In both a COVID-19 scenario and a scenario for someone with food allergies, food restrictions, or celiac disease, my point is that you have choices. While other people’s choices can affect you, your choices are the ones that matter most.

With celiac disease, which I’ve had for more than 13 years, I’ve personally chosen many times to not eat at places that weren’t safe for me.

I would eat a meal or snack before I go or while I’m there, or I bring food from elsewhere. Sometimes I’ve felt really awkward, but it was safer and the right choice for me to make. Sometimes it’s because I couldn’t change the venue, and the venue’s safe food was dry lettuce and dry chicken, and it just wasn’t worth eating. (Ever turned your nose up at airplane food? Same idea.) Sometimes I would bring my own food, and it’s gotten a lot easier to use a delivery service to get food from a safer (and often tastier) place. Or sometimes I couldn’t change the venue and there were supposedly safe options, but then the waiter did something that indicated it was likely not safe for me (e.g. saying “oh, just take the bread off your plate, no big deal”). That’s pretty much an automatic “do not eat here, it’s not safe” red flag being waved in my face.

It’s not fun to not get to eat or not get to do what everyone else around you is doing. I get it. Trust me, I do.

But do you know what is even LESS fun than feeling awkward? Getting glutened. Within minutes, feeling your chest tighten and getting abdominal cramps (that are like getting a “stitch in your side”, but all the way across your abdomen, and unrelenting for 30 minutes) that make you think you should go to the ER. Days of fatigue, brain fog and sore abdominal muscles. Knowing that you’ve increased the chances of tears in your small intestines and increased the risk of various types of cancers. All because of a speck of a crumb that found its way into your food.

So I make awkward choices. Sometimes I face teasing, and occasionally outright bullying, although thankfully that has been rare. And I’ve survived these choices.

I’ve gotten better over time, researching venues and making recommendations about safe places for me to eat. 99% of the time, people have zero problem going to the places I recommend. They want me to be safe and happy, they don’t really care what they eat, they’d rather have my (happy) company than to go someplace without me. (And if your  friends/colleagues/family members don’t care that much about you…maybe this will give you some food for thought.) I can’t always find safe GF options, so I also plan ahead and pack tasty snacks or food options, eat in advance, or plan to eat afterward.

And when that’s not possible, I make the choice to do the “awkward” but safe thing for me.

So in a COVID-19 or similar pandemic, I want you to know that you have choices. I’ve read a few stories from folks online who have shared regrets that they felt “peer pressure” to go eat at a conference, inside, because that’s what their friends or colleagues were doing. And they got COVID-19. Which doesn’t sound fun in the short run (being sick, getting stuck in foreign countries or strange cities, having to disrupt the lives of everyone around you, struggling to not infect your loved ones, being stuck without child care), nor the long run (risks of long COVID, or risks of additional conditions that can occur following COVID).

If you need ideas, here are some you can consider:

  • Pick an outside venue.
  • Get takeout food and go eat outside somewhere.
  • If you are inside, ensure good ventilation (sit by windows, open the windows). If you’re unsure the ventilation is good enough, you can bring a CO2 meter* to measure just how stale the air is. If you have a choice, sit somewhere quieter and further away from others, so you don’t have to yell in each other’s faces to be heard.
  • If the ventilation isn’t great, or you’re in a loud and/or crowded venue talking face to face with people who haven’t recently tested, you might want to stay masked except for when you are eating or drinking. Then put your mask back on. Limit the time you are exposed to the indoor air that everyone else’s been breathing.
  • If you are inside a poorly ventilated, loud, and/or crowded space, or otherwise consider the risks to be too high for your comfort, you can leave your N95 mask on the whole time – you don’t have to eat just because everyone else is eating unmasked!

I get it. It’s hard, it’s awkward, and peer pressure is real. But you do have choices you can make, and it gets easier when you think about your choices in advance and mitigate or decide how you’ll handle such a situation.

I hope this has given you food for thought about what choices you could make if you’re worried about such situations, and know that there are many others out there making similar choices, whether it’s because of COVID-19 or because of things like celiac disease, food allergies, or other dietary restrictions for health reasons.


Note: this is the CO2 monitor we bought (amazon affiliate link). It’s pricey, but we’ve definitely put it to use on planes and at meetings and feel like it is a worthwhile tool.