Category: Celiac

If you have celiac disease in your family, I highly recommend a quick read of the University of Chicago Celiac Disease Center’s annual report – it is a short synopsis of relevant research (free – http://www.cureceliacdisease.org/wp-content/uploads/CdC_ResearchReport_17_WEBSITE.pdf).

What I find particularly interesting is the link between the gene and a virus. This is especially important for families with a history of the disease (it is genetic) with young children, as the research shows that a virus can turn on the disease when the young child is first introduced to gluten.

The second item – talking about the drug montelukast (also known as singular), might be why my diagnosis took so long. I had been taking montelukast for asthma and allergies for years. This likely disguised some of my symptoms.

I also find the last set of questions interesting – in part because I did not have child onset of celiac disease. I expressed my first known symptoms in my late 20s / early 30s. I can look back now and recognize the symptoms, but at the time I had no idea. I had just learned about celiac disease, as my father had just be re-diagnosed. At the time, we had no idea that it was a genetic disease.

I found out I had the celiac gene from 23andme – I had done the genetic test up in Canada, because at the time I did it, the US didn’t allow for the medical information. The test showed that I carry one of the celiac genes. At about the same time, I was diagnosed with Dermatitis herpetiformis (DH) – the skin variant of celiac disease.

There still does not seem to be much awareness for adult onset celiac disease. Much of what is written talks about onset in young children or adolescents (see https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220). This lack of adult onset knowledge reflects on healthcare for adults with celiac disease. My specialist doctors (gastroenterologist and dermatologist) each look at the symptoms of the disease and treating the symptoms – with a gluten-free diet and various creams. No one looks at it holistically. I also do an annual blood test to ensure that the antibodies that attack my system are within the range of what a person without celiac would have. It took more than 6-months on a strict gluten-free diet for my body to get to that ‘normal’ range.

In 2017, I had one or two mild reactions – but nothing severe. I don’t know if this is because I no longer react severely to mild traces of gluten, or if it is that I’ve been successful at avoiding exposure to even mild traces. I’m learning to be a bit more adventurous with my eating – especially when eating out – to the point where I have forgotten to explicitly tell the wait staff when ordering, and having to call them back to tell them. I still mostly pass on foods when I’m visiting with friends, focusing more on visiting than on eating. I have much less anxiety about exposure. I guess you could say that I have learned to live with it – I have adapted.

It was about this time last year that I was last ‘glutened’ (a term used by celiacs to describe accidental injection of gluten).

It has taken me a while to learn how to navigate in the world gluten-free. I was overly cautious – until I learned that my antibody counts were normal. Then I ventured out a little more. I found myself missing eating out. I found myself avoiding group activities that involved food. Once my antibodies were down, I realized I could not live that way. I needed to be able to reach out – I needed to be able to eat at more than one place.

I found the app “Find Me Gluten Free” (https://www.findmeglutenfree.com/) to be a life saver. Whenever I’m someplace unfamiliar and need to eat, I pull out my phone and open up the app. It doesn’t show everything, but it often shows several places that are reasonable options.

I’ve learned that most fancy restaurants can address gluten free. Any good chef knows how to handle cross contamination. Most places won’t ‘guarantee’ gluten free – I think that is mostly a US fear of litigation issue. Some are better than others at saying “our gluten free menu isn’t appropriate for Celiacs” … which is a way of saying that our gluten-free menu isn’t really gluten free – it is just an excuse to charge $2 extra to substitute wheat for something that might have been gluten-free when it was taken out the package, but isn’t by the time they are finished cooking it! Ya, that does sound a little cynical.

I have learned to ask for the Gluten-Free menu if a place has one. I still need to talk to the server and be specific about my need to not have cross contamination – but it saves me a lot of time and heartache, as I don’t then see items on the menu that sound good but that I also cannot eat. So I don’t feel like I’m missing out as much.

I am still nervous when I travel. I need to bring my own food for the plane, but also a bunch of my own food for snacks and for breakfast. I miss out on the “free breakfast” at many hotels because they have absolutely no gluten free options. I’ve suggested to several that all they really need to do is have some GF cereal that they don’t put out for everyone (in the little boxes) and hard boiled eggs are also a great GF option. That being said, I usually bring my own breakfast anyways, because I cannot guarantee of finding something, and I cannot risk not having anything.

What this means is that travel takes a whole lot more energy than it used to. Attending conferences (which is something that I used to love to do) is also so much more challenging, that I find myself shying away from them. My dissertation writing has been a great excuse for me to say no to several that I was concerned about. I still do go to some, but I know that I will need to carry a lot of snacks and make my own breakfasts, and not count on getting anything for lunch – which is perhaps the hardest part – going to lunch watching others eat, or not going to lunch with the group and missing out on the social / networking time.

I thought this was to be a happy post – yay 1 year gluten-free – a great accomplishment. It doesn’t feel like a happy post. It isn’t something that will ever end. Research that came out in April indicated that they may have identified a virus that turns on celiac disease. For those that don’t know, celiac is a genetic disease – if you have one of the two genes you can get celiac – but not everyone does. Plus, if you have gene it can turn to celiac at anytime – so could not have it one year, and then find that you have it the next. This research is really promising for those who have the gene but not yet have celiac disease. It may mean that a vaccine can be developed so that those with the gene never develop the disease. That is pretty awesome news and definitely a break through.

There has been some research done on a “pill” or something you can take that might make it possible for the body to digest gluten and not have it react horribly. This would be sort of like the pills you can take for lactose intolerance. It isn’t there yet – but is also promising, in that it would make it easier to eat out without having to deal with the constant fear of getting accidentally glutened. It would make travel a lot easier.

From a home front, I’ve done a pretty good job managing to keep my home mostly gluten-free. My husband has a few things that he likes, so we segregate – but mostly he gets his gluten at work over lunch. He often goes out with his colleagues, and can eat as much gluten as he likes. I don’t think he really misses it at home – but for things like hiking, I’m sure he misses the ability to make a sandwich at home (or at the campsite – although with camping he will buy his own bread – it is just that I won’t even touch it, so there is no way I’m buying it and I do most of the shopping).

And so, there you have it. I’ve lived a year without accidental exposure. Here is hoping a make another one gluten-free.