
Ask HN: Does anyone have celiac disease and how do you deal with that? - gretar
Hello, I would like to know if anyone has celiac disease and how do you deal with that? I know that this is not  reddit or Facebook group, but I would like to hear opinion from you. For example, in my country (Lithuania) this disease is still quite rare, and it is quite hard for others to understand the depth of it. For example, even with grandparents I still  need to tell them that they can&#x27;t give any buns for kids, even single one or that you can&#x27;t cook in the same pan if you cooked something with wheat and so on. My family has not been in a proper restaurant since we found about the disease. What are the most gluten free countries? How do you deal with this?
======
StopHammoTime
When I was first diagnosed and was largely a loner playing World of Warcraft,
it was very easy to stick to a Gluten Free diet. Now, I've gotten older, am in
a relationship and spend more time with people, it's been a lot harder to stay
well.

My symptoms are specific: when my immune system is working well, I start to
act like I'm drunk (slur, can't remember things), and I'll basically sleep for
24 hours. When my immune system is down (like I'm sure it is now), I just
sleep all the time and get rashes.

The worst thing that has gotten me as I get older is people guilt me into
eating out with them. I really wish people would stop it, because I know it's
going to lead me to getting cancer. Despite the protestations, no one takes it
seriously. Even comparisons don't work. Unfortunately for most people, unless
it's anaphylaxsis they don't think it's real.

I have a strict sick-once, no return policy for restaurants. I don't blame the
restaurants, because unless they advertise themselves as Coeliac-accomodating,
it's a risk I take. When I go out with family I usually just try to avoid
eating, but my girlfriend doesn't like me skipping meals and can be quite
indignant about it. The first month we were together I got violently ill
because a work function she was at glutened me badly. I wanted to eat nothing,
but she wouldn't take no for an answer. The kitchen made some "gluten free"
food. It was not gluten free.

~~~
shadowprofile77
If your girlfriend shows this little understanding of how serious your
situation is and even stoops to guilt tripping you into meals in certain
places for whatever reason "and not taking no for an answer" (as if it were
some sort of game) despite the distinct risk of you getting badly sick, you
should also seriously reconsider your relationship with her. Any relationship
is fraught with difficulties and compromises but being chronically ill and
enduring one in which the other party can't make accommodations about vital
health requirements is just an extra burden of stress that really shouldn't be
tolerated. I'm basing this on the anecdotes your wrote in your comment. Maybe
she's become more understanding since then or there are things you haven't
mentioned that mitigate.

------
jlangemeier
I was diagnosed with Celiac in 2007, and even in the last 10 years there's
been a huge expansion in the US of what's commercially available.

But, I think the thing that has helped me the most is learning how to bake.
Home made breads will consistantly beat the pants off of most commercial ones;
the only problem you may find in Lithuania is availability of gluten free "cup
for cup" baking flours, but if you can't find them readily, you can substitute
most flours by weight into a standard recipe.

Some notes on gf flours, you will never get the rise you would out of bread
flours because they're missing the biggest ingredient for rise, gluten. But
you can get pretty darn close with your own sourdough mother made out of a mix
of other flours. My usual mix includes some combination of:

    
    
      - white rice flour
      - brown rice flour
      - tapioca starch
      - almond or teff flour
      - xanthan gum, guar gum, or amaranth gum as the gluten substitute
      - powdered egg whites also as gluten substitute
    

You're going to need to experiment, but getting a good all purpose mix will
make a night and day difference in the gluten free life.

As for countries that are "better" for gluten free, I would hazard a guess
that many asian countries are going to be better just due to their lack of
reliance on gluten heavy grains as dietary staples. And lastly, you're going
to have to get used to not eating out as much, and being very deliberate about
it no matter where you live.

~~~
kinggrowler
The problem with a lot of Asian cooking is many dishes use soy sauce, which is
made with wheat. I get a huge reaction to some dishes! I'm still devasted I
can't eat my favorite foods at the local Szechuan place...

~~~
mikekchar
Traditional Japanese shoyu is made with soybeans only. Tamari is made with
wheat. It incredibly unfortunate, then that Kikkomen, when it tried to
distinguish its naturally brewed soy sauce from the hydrolysed soy protein on
the market, decided to call its shoyu "tamari" in the US (and various other
places). It's gotten so bad that "tamari" is often the one that doesn't have
wheat in it abroad. However, at least for home cooking, if you buy a decent
Japanese shoyu, it will definitely not have wheat.

~~~
Bheliar
At least here in Germany there is a Kikkomen soy sauce specifically labeled as
gluten free. Although of course the label does not mean that it does not
contain wheat.

------
losingthefight
My youngest daughter was born with it and strangely enough, my wife was
diagnosed with it a few years after she was born. Neither I nor my oldest
daughter have it. Both of those who do have it were confirmed through several
tests with the doctors.

We are lucky to be alive now rather than, say 20 years ago. Gluten-free and
celiac-friendly foods are readily available in the US. We live in New
Hampshire and most restaurants and grocery stores have a wide variety of
options. I know it is better in larger cities, but most places are pretty
good, and we have a few favorite restaurants near by that take it very
seriously.

The hardest part, honestly, is at home. It is too easy to forget I made my
oldest daughter a grilled cheese and therefore have gluten crumbs on my
fingers. I then touch something my youngest is going to eat, like getting her
some chips or fruit, and I accidentally contaminate her. We've gotten better
over the years (she's 12 now) but it still takes a lot of work and discipline.

Overall, though, it's not nearly as bad as it used to be. I know some older
friends who have Celiac disease and they would talk about how hard it was to
find anywhere to eat out and how expensive things used to be (although, they
are still expensive now).

Still though, it would be great if there was some technology to identify cross
contamination or, even better, some medication that would prevent the
reactions. It would be awesome to not have to worry about the implications.

For reference: my daughter with Celiac is a top-notch gymnast (yeah, dad brag
and all, but she legitimately always places in the top 5 at every meet). If
she gets cross contaminated though, she can barely walk in a straight line and
her focus is way off. It has a real, noticeable impact.

~~~
clarkevans
My wife is a celiac. We made our household totally gluten free and established
hand-washing (and tooth brushing) routines once you enter the home. It is easy
enough to get everything you need without having gluten products in the home.
Also, we tend to cook more which is more fun for everyone. At first it seemed
a burden, but the peace of mind and the health of my wife really improved.

------
sunnyP
It took some time to train my family of gluten sources, and I am thankful they
accommodate me. For the family members that have a difficult time
understanding the gravity of celiac disease, I asked them why they don't serve
rhubarb leaves. They quickly said they are poisonous. I said to them wheat is
poison to me. This helped them to relate it to something that they can
understand.

Try to bring food, like buns, with you to family events. Unfortunately, cross-
contamination is your biggest enemy, so you might want to have a backup plan
if you are not comfortable. I always respectfully decline food if I believe
there is a risk.

I only eat at restaurants that I know that the chef is aware of preparation.
The best ones have celiac disease themselves, or they like to talk about how
they prepared the meal. If I ask someone at a restaurant about their GF
options and they do not understand, I will not eat there.

Here in the States, the GF options are plentiful.

On the bright side, over the last 18 years, I found that wheat is not the
worst thing that you might need to avoid. Treat yourself to an ice cream :)

~~~
clarkevans
Rhubarb leaf comparison is nice... but they don't stick to everything like
gluten does. At family gatherings, we bring home-prepared meals and hope
relatives don't pester us about it. It's a even harder challenge at
professional dinners that are prepared by well-meaning colleagues. We've given
up on eating out altogether, perhaps it's just the severity of the allergy.
Activated charcoal helps control the symptoms from exposure, but it is not a
treatment.

~~~
sunnyP
> It's a even harder challenge at professional dinners that are prepared by
> well-meaning colleagues.

This has always been my biggest challenge that can get awkward quickly.

------
parkerhoyes
I have very severe celiac disease which went misdiagnosed for far too long
(due to a false negative blood test and negligent doctors). It got to the
point where I had severe balance problems, vision loss, paresthesias, chronic
pain, and was barely able to take care of myself during the worst of it.
Eventually my doctors started thinking it was MS, but a normal MRI ruled that
out. I finally decided to go on a strict gluten-free diet on a whim and I made
a full recovery a month later, which led to a celiac diagnosis (finally).

Since then I've been preparing all my meals from scratch - I don't eat out
much. Thankfully in Canada it isn't too hard to find GF ingredients, but I
sometimes have to get creative. I generally try to discover new GF foods
rather than eating GF "knock-offs" (eg. GF pasta, which is rarely good). Not
all places in the world use wheat-based ingredients as much as in the west, so
I try to look towards other cultures with different cuisines (for example, I
learned to make onigiri which is really good as a snack).

I almost never eat food prepared by someone else because it's just too risky
given how severe my celiac disease is. I'll often bring my own food or help
cook if I'm eating at a friend's.

~~~
proverbialbunny
Did you test to see if it is a food allergy? The two can have the same
symptoms, so you can't tell without an allergy test.

The advantage of this is there are allergists who work on permanently getting
rid of food allergies. As far as I know for Celiac sometimes people who are
perfectly off of gluten for ~7+ years will sometimes balance and their
Celiac's will go away, but it's rare.

~~~
jlangemeier
Celiac does __not__ go away... ever. It is a genetic, auto-immune disorder,
your body attacks the protein as it's being processed in your lower intestine,
stripping and killing the cillia which is what causes the primary symptoms of
inflamation and malnutrition.

Celiac, like Type 1 diabetes, gout, lupus, and many other auto-immune
disorders can only be managed, not magically cured.

Gluten intollerances are a different matter entirely, and can stem from over
use of gluten enriched flours (think pizza doughs, white bread, anything using
bleached flours, and anything that commercially needs more rise than the
natural flour can provide).

~~~
basch
I thought consensus had formed that gluten intolerance didn't exist, and any
sort of ibs like reaction was due to fodmap carbs, not gluten protein.

~~~
jlangemeier
There's someone that commented in this thread about gluten oversaturation that
provided some decent links.

Unfortunately, there is no strong consensus that gluten intolerance does or
does not exist, and the best most folks without Celiac can do is a nutritional
exclusionary screening. The real tell on it is more to do with what grains can
or can't be used/tolerated when it comes to wheat sensitivity, gluten
intolerance, or fodmap carbs.

------
agensaequivocum
My Wife has it. We have to be very careful when eating out as there are about
6 different levels of gluten free support:

1\. What's gluten? Or, it has rice so it's not gluten free.

2\. Yes, these items are gluten free, and that's it.

3\. Yes, however, they're cooked in a shared fryer.

4\. Yes, cooked separate fryers!

5\. Yes, everything is made in a separate kitchen.

6\. Yes, the entire establishment is free of all gluten.

In the US at least the vast majority are at level 2.

You can find level 4 fairly easily in more major cities. Though you have to be
careful because it can still be hit or miss depending on how careful the cooks
are.

I know one level 5 bakery, and one level 6 cafe.

Eating at home is far easier. We still have glutenful things as neither I nor
the kids (so far) have a gluten problem. You just have to be a little careful
about not handling glutenful food over gluten free food and dropping crumbs.
It also helps that my wife does the cooking so when the there is gluten it is
not to integral to the meal, or is extremely simple to make separately. (Such
as a burger with and without a gluten free bun)

------
LogicX
I was diagnosed Celiac in 2008.

I recently moved to Boulder, CO and wow is life easier here: Everyone knows
about and understands Celiac Disease. There are hundreds of restaurants with
options in the greater Denver area, many of them 100% Gluten Free. I basically
use this app many times a day:
[https://www.findmeglutenfree.com/](https://www.findmeglutenfree.com/)

I just went to the 4 year celebration this weekend of my favorite Brewery:
[http://www.holidailybrewing.com/](http://www.holidailybrewing.com/) \- which
was the nation’s first 100% Gluten Free Brewery. Had two different IPAs there
today, and they had three gluten free food trucks in the parking lot today.

This place is like a celiac oasis! Love it here! Also plenty of grocery
options, locally made breads and pastries. Though the ‘cake’ (literally) goes
to [http://www.mariposabaking.com](http://www.mariposabaking.com) in Oakland
for best gluten free pastries - Been visiting them for over a decade. Was just
there this week. Amazing!

I’m recently divorced, and sometimes it was a struggle eating at home with my
ex-wife who was not gluten free.

I’ve traveled a lot to countries where they didn’t even understand what an
allergy was (Ecuador was the worst).

These cards are a life-saver when traveling to countries where the language is
not your native tongue:
[https://www.celiactravel.com/cards](https://www.celiactravel.com/cards)

CVS Pharmacy has “Gluten-Aid” pills which use a natural enzyme to break down
gluten - I always carry these pills with me, and if I'm in a questionable food
situation, maybe cross-contamination concern... I take the pill. Helps get
through questionable days and allows for more travel.

Until you gain a comfort level of how to know whether to trust
food/restaurants, you may wish to look into a gadget:
[https://blog.nimasensor.com/](https://blog.nimasensor.com/) which tests for
gluten in food.

------
Gatsky
Big cities in Australia have a lot of gluten free options.

There are some interesting therapies on the horizon, basically a pill which
contains an enzyme that breaks down the gluten before it can reach the small
intestine [1].

I believe Coeliac disease will be cured in the next 20 years. The pathway to
doing this is deleting the population of immune cells (T & B cells) which
maintain the gluten sensitivity.

[1] [https://endpts.com/takeda-swoops-in-to-buy-little-biotech-
pa...](https://endpts.com/takeda-swoops-in-to-buy-little-biotech-partner-and-
its-celiac-drug-poised-to-change-standard-of-care/)

------
leipert
I was amazed by Italy and Spain. A lot of options, bread, beer, in Cafés.

Here in Germany it is getting better from a store point of view, while
restaurants are still rare. organic stores often gave a good selection, but
now discounters have it too.

I think about 1% of the population have some kind of intolerance, while true
celiacs disease is much rarer.

Personally I started baking with gluten free flour, shifted to more rice as a
carb. But for kids it is super hard. It is now essentially part of your job to
educate other parents, family and teachers. Stay strong and be aware of stuff
like gummy bears as they sometimes contain wheat flour.

------
Jefro118
I think where you live has a huge impact. My ex-gf is celiac and has a much
easier time getting food in London than in her home country (Romania) although
it's not too bad there either. The gluten-free fad/trend, whether it broadly
makes sense or not, has significantly increased the supply of gluten-free
products here, both in supermarkets and restaurants.

If you're not being taken seriously in restaurants, one trick is to say that
you have a gluten allergy. More people will immediately understand "allergy"
as something to take seriously whereas many people have no idea what celiac
disease is, or sometimes think it's the same as a gluten intolerance. This is
technically lying, but given how sensitive celiacs can be to even a tiny
amount of gluten (and it sounds like your symptoms are pretty bad) it should
really be handled in the same way by restaurants anyway, so don't feel guilty
about it.

With regards to other people, just be firm, straightforward and distrustful.
It's odd how people that care about you can end up trivialising something like
celiac disease or think it's no big deal if you have a slice of pizza, etc.
They're not being intentionally malicious, but your health comes before their
incoherence and ignorance.

This is all speaking from the POV of someone in London, so I don't know how
well this would work in Lithuania.

------
Vayda
I live in Italy and here it's quite common so I usually don't have problems.
There are gluten free restaurants, my friends understand what I mean when I
talk about contamination. But I'm Bulgarian and there it's totally unknown,
people even don't know what gluten is! Even doctors sometimes don't understand
and people usually think I'm just making a strange diet. I usually try to
explain but it's not easy because everybody thinks you are exaggerating and
don't understand the damage of eating contaminated food. What I do there is
try to cook for myself if possible, for example if my cousin invites me for
dinner I go first so we can cook together so I can check everything. If
someone offers me something I usuali ask something to drink (tea, coffee,
coce) or a fruit . At the restaurant I usually take a salad or some meet
explainig my problem (even if it's embarrassing sometimes). In Italy, Germany,
Spain it's easy, here we have some apps so you can find gluten free bars and
restaurants. Good luck! And remember, always bring some gluten free food in
your bag when you go out :)

------
augstein
Modern wheat is bred primarily for optimal industrial processability. Many
experts say it has lost some of the healthy properties and good digestibility
compared to indigenous wheat strains.[0]

That seems to be the reason a rising number of people, that don’t have normal
celiac disease, nevertheless have problems digesting wheat products and choose
a gluten-free diet.[1]

At least here in Germany, where I live at the moment, there is a large
selection of products in almost every grocery store available for a a gluten-
free diet. One of the more popular brands seems to be Schär from Italy.[2]

Also many brands that sell wheat based products, also offer wheat-free
alternatives, like Barilla, the worlds largest producer of pasta.[3]

The people I know that go gluten-free, don‘t really have to limit themselves
regarding the food they can eat, as there seem to be gluten-free alternatives
available for the most popular wheat-based products.

0) [https://grainstorm.com/pages/modern-
wheat](https://grainstorm.com/pages/modern-wheat)

1)
[https://www.newyorker.com/magazine/2014/11/03/grain](https://www.newyorker.com/magazine/2014/11/03/grain)

2) [https://www.schaer.com/](https://www.schaer.com/)

3) [https://www.barilla.com/en-us/product-
results/pasta/range/gl...](https://www.barilla.com/en-us/product-
results/pasta/range/gluten-free)

------
TACIXAT
I am, after cutting out gluten I cut out a few more foods too. I cook. I eat a
lot of meat. You can still eat other carbs like rice, potato, tapioca, and
oats. Look at FODMAPs too, since a lot of celiacs have trouble with some set
of those.

You can speak with restaurants ahead of time. Find one that will accommodate
and become a regular. Traveling will be difficult, I usually do rentals with a
kitchen when I go out of town.

The US the restaurants will have allergy menus, not many will guarantee no
cross contamination because of liability. The best effort they promise doesn't
inspire much confidence in me so I do not eat out as much. When I do it is
usually at an all you can eat steak or Korean BBQ place.

I can not really say sorry to hear that like the other comments. It will be
difficult, but knowing to avoid the things that make you sick is a blessing,
not a curse.

------
oconnore
American Test Kitchen has a gluten free cookbook with recipes for bread,
pizza, pancakes, etc. It’s really good, and very informative.

~~~
jalbertoni
As a tiny add-on to this: In America most flour is ground WAY thinner than in
the rest of the world. This includes gluten-free flours and means you will
(probably) need a bit more flour than the recipe says. Inter-continental
baking is an adventure.

------
toddh
You have to figure out how sensitive your are. If you feel really crappy after
a small exposure then plan accordingly. If you can tolerate some exposure then
your life will be easier. Unfortunately, it changes over time so you'll have
to be on the lookout.

It's easiest if you make your own food and switch to a vegetable and meat
diet. Trusting what anyone says about food content can lead to problems.

And don't apologize for your dietary requirements. It's your life, not theirs.
They don't have to approve or even understand.

But this all take a lot of willpower. It's not easy.

------
Moru
A problem with gluten free diet is that it has become one of the popular diets
for living healty. So when you go to a restaurant and ask for gluten free
food, they think you just want the diet version, not the celiac disease
version. The diet version isn't totally free of gluten, just reduced gluten
content.

Some restaurants are even asking for a paper to show you have the disease
because they are tired of all the people asking for gluten free just because
they are on a diet.

Don't have it myself but was working with someone that have it, together with
a number of other food alergies.

~~~
LogicX
I always announce to the wait staff that I have a Gluten Allergy.

This typically leads down one of two paths: 1) Them apologizing and explaining
about shared fryers, cross-contamination, etc. 2) Them asking if it’s Celiac,
understanding, and listing how they’ll accommodate me so I don’t get sick.

If those don’t happen then it may be a sign to abort and leave if they don’t
know what to say, have to get others, don’t offer to talk to the kitchen
staff, etc.

------
a-saleh
There are degrees. I remember a friend that had a degree of intolerance, and
definitely wouldn't accept a bun, but wouldn't have to care about reusing a
frying-pan.

So, if you need to check for every 'might contain traces of wheat flour', that
can be tough.

On the other hand, I live in czech republic and while I am lucky enough not to
have celiac disease, I see enough friends managing it as annoying, but not
terrible.

You can get gluten-free bread in speciality stores (and if you get on a pre-
order list, you can even get freshly baked once a week), you even can get
gluten-free pizza, if you ask around (well, your mileage may vary, if even
traces of gluten are a problem, at some places they still had just a single
oven)

Due to EU regulations, you should be able to see in restaurants if a thing
contains gluten. Colleague that had celliac disease and went with us for a
lunch always doublechecked, often just ate a salad, and preferred a vietnamese
place, because their dishes (and noodles?/pasta?) is rice based :)

------
peteratmsr
If you are celiac or think you are celiac, please consider participating in
this at-home study to help develop a new TCR-sequencing based diagnostic. You
can find out more, and whether you qualify, here: [https://celiac.org/about-
the-foundation/featured-news/2019/0...](https://celiac.org/about-the-
foundation/featured-news/2019/09/at-home-study-to-help-develop-new-celiac-
disease-diagnostic-test/)

------
opless
As many others have said here, I have a strict one-time contamination then no
return policy when it comes to restaurants.

The UK is pretty good with Gluten Free foodstuffs and has a fairly narrow but
reasonably good restaurants; * Bella Italia * Zizzies * Pho * Prezzo

Most restaurants have separate preparation and cooking areas (Pho is almost an
entirely GF kitchen)

When I’m on holiday, I always do self catering, and eat fairly simple meals.
Europe is fairly good with labelling allergens and have Free-From sections in
Supermarkets.

Pasta/Bread is not the same as the regular wheat based versions. However I
weaned myself off bread. Pasta has a different texture, maybe like day-old
reheated by microwave stuff. I like it that way - hahaha

If you're particularly sensitive to gluten the EU definition of gluten free
can bite you, but having a strict rules about never revisiting Food/places
that contaminate you is a good rule of thumb.

The feeder personality type will be the most frustrated with you.

Be firm with whatever rules work with you. Don't waiver, unless it removes
more risk.

I'm so happy knowing my struggle with this is shared, and that others have
similar reactions and coping strategies!

------
petercooper
Yes. I simply don't even consume gluten. This is pretty easy in the UK as it
always has to be mentioned in bold type on any food packaging. I simply don't
eat if I am unsure of the providence of the food and I am always going through
the trash double checking food other people prepare for me but people are used
to my oddities.

When I travel it is a nightmare as few other countries have packaging rules as
good as the UK.. being in Amsterdam was a particular nightmare, it's as if no-
one there is celiac (or uses a toilet, but that's another story).

------
anonsivalley652
Come to the US, CA or NY specifically, there's gluten-free food everywhere. I
wouldn't say there are whole stores, but there is a long aisle and many
cultures of food to choose from. Organic gluten-free. Organic gluten-free
vegan. Amy's makes a bunch of (yum!) non-GMO, organic, gluten-free and vegan
food. [https://amys.com](https://amys.com)

A guy I worked with only discovered at 32 he had Crohn's (not celiac but
potentially terrible too) his entire life when he ended up in the hospital and
started turning shades of green.

Personally, I have IBS, as my grandmother did, so gluten isn't the best for me
(doubled-over and long boughts HNing from the toilet) but I eat it sometimes
anyhow. I'm vegetarian (not vegan) and gluten-minimal, and don't have any
trouble finding food here in the SF Bay Area.

------
throwaway34241
For eating out cross contamination can be hard to avoid. Some restaurant
genres like some types of Indian food often don't use much gluten ingredients
naturally, so they might be a safer bet although you probably should ask if
you're concerned. A few restaurants where I live explicitly offer gluten free
options including preparation.

Most grocery stores I've been into have some selection of gluten free breads &
cookies, some of which are pretty good. Price varying from moderately more to
quite expensive.

At home I usually find it easier (and much cheaper!) to just eat food that is
naturally gluten-free (like rice and potatoes) instead of gluten free versions
of wheat based foods. If you don't already own a rice cooker I'd suggest
getting one (the cheap ones are fine), I think almost everyone who eats rice
as a staple food uses one.

------
tracker1
I'm not really celiac, but am allergic to legumes, which faces similar
hurdles... For the most part, if I stick to eggs, meat and some greens, I'm
okay... the further I get, the worse it gets. A little bit of soybean oil in a
dressing doesn't hit me as bad as other things, but everything has a toll to
pay.

It depends on how bad it is for you specifically. For me, it's only bad when I
give into cravings. I was just ill a lot for most of my life and really didn't
discover the core issue until an elimination diet a few years ago (42yo at the
time).

Because of diabetes + the legume issues I mostly stay low carb and with mostly
animal nutrition, which is something everyone wants to get religious about. I
feel better this way. Being ill and stuck in bed all the time or all my
muscles achy is no fun.

------
metaxy2
I'm sorry that I can't directly help you (although I have IBS and a couple of
other chronic diseases, so I can sympathize). But it makes me wonder if
there's an opportunity for a startup, or even just a nonprofit online
community, here. The targeted community being people with rare diseases in
countries that are too small (or don't have the communications infrastructure)
to offer good support. There's an especially big opportunity to do good in
situations like this, where the disease is incredibly common overall, but
apparently rare where the OP lives, so there is tons of information online but
probably very little is written in Lithuanian or targeted to local needs.

Or maybe there's stuff like that out there already that we'll be able to share
with gretar, in which case, even better!

------
alistairSH
Both my wife and I are celiac.

It was quite an adjustment, but with both of us unable to consume gluten, the
house is GF. I’ve found eating out with coworkers the hardest - generally less
planning, just going out for happy hour or whatever.

As far as eating in foreign countries (we’re in the US), Italy has been the
best. Restaurants are well trained, there’s even a certification program.
Residents get a tax break because GF food tends to be more expensive. And all
kids are tested.

Scotland generally has GF options at the market, even smaller Co-op locations,
but dining out is hit or miss. Nicer restaurants are usually accommodating,
but pubs and suchlike not as much.

Iceland was similar.

And the US is really hot or miss. Cities tend to be ok. Suburbs and rural
areas are a mixed bag. Chain supermarkets have GF food, small corner markets
usually do not.

~~~
jaclaz
Not to nitpick (too much), but a few IMHO necessary clarifications for Italy.

> Restaurants are well trained, there’s even a certification program.

Yes and no, it is on a voluntary basis, and it is basically a private
certification (better than nothing, but it is not an "official" one):

[https://icea.bio/ristorazione-senza-glutine/](https://icea.bio/ristorazione-
senza-glutine/)

>Residents get a tax break because GF food tends to be more expensive.

Not exactly a tax break, people affected can get some gluten free food for
free, according to a rather complex authorization process with a limit of
around 100 € per month, some reference:

[https://www.theitaliantimes.it/economia/alimenti-senza-
gluti...](https://www.theitaliantimes.it/economia/alimenti-senza-glutine-
gratuiti-celiaci-nuovi-tetti-di-spesa-buoni_120220/)

There used to be a tax break for a few years, but it has been cancelled
currently.

>And all kids are tested.

No. Only if there is a suspect of the kid being affected, and the procedure is
not completely free.

But yes, generally speaking there is a lot of attention to the issues that
someone celiac may have, even in (some) churches you can have gluten free
(actually low gluten) communion wafers:

[http://www.ansa.it/english/news/2017/07/11/italian-celiac-
as...](http://www.ansa.it/english/news/2017/07/11/italian-celiac-association-
says-low-gluten-hosts-ok_0afd4792-b70e-4f75-8f47-c19fc846a91c.html)

~~~
alistairSH
Thanks for the clarifications. All of the above are more/better than anything
I've seen in the US, so I'll take it.

And FWIW, if anybody is visiting, the best GF pizza and calzone I've had was
from Mama Eat in Rome.

------
mhh__
It runs in my family, I don't have it. Gluten free food was pretty rare even
ten years ago but it's pretty good now where I am (in the UK). It costs more
but not a huge amount more.

Some things that come to mind:

* Ring up restaurants ahead of time and ask if they can cater for you - they often can (Where I am at least).

* Gluten free cakes can be quite bad - they usually taste fine but the lack of gluten makes them fall apart: if you like baking it's worth experimenting with alternatives to gluten.

* Some people assume that it just means you can't have gluten (a la a mild allergy), so emphasis that it is a serious disease ("No more Gran " was what I was told when she was diagnosed (at 70something!))

~~~
opless
I found out in 2006, just as the EU allergen labelling directive started to
really kick in properly.

Bread has come a long way. Pasta is brilliant. You can now have pizza! Gluten
free soy sauce/tamari is available! Fish fingers Sausages! Pies!

Some things are sadly no longer stocked which were quite tasty. But given the
british pallet im not surprised!

------
Yawanoc
Sorry to hear that you have it, it's a tough thing to do deal with. Although I
do not have celiac my sister does and I grew up in a household where I
couldn't put butter on toast and then go for a second dab of butter. Here are
a few tips of advice from what my sister has done, and what our family does.

> At restaurants or family gatherings my sister would always say, "I am
> allergic to gluten" in place of "I have celiac disease. An allergy is within
> the experience of most people, particularly in severe cases like some peanut
> allergies. In this way the waitresses and family members often ask about
> severity, in which she mentions nothing that touches gluten should be used
> to prep her food and that washing a set of utensils is best.

> A second restaurant protocol is asking whether a salad, piece of meat, or
> other dish has coatings, dressings, or bread accoutrements. Grilled chicken
> and steak are my sisters favorite as when she asks if they are coated in
> flour the answer is always 'no'. When salads or soups come with bread or
> croutons she asks for them to be removed when ordering.

> When a dish comes with a loaf of bread, croutons, or other gluten items we
> weren't able to discern from the menu or the waitress, she usually asks for
> one of us to remove it and eat it, if the contamination was small. Knowing
> how you react to small amounts trace gluten is the key here.

> Create a shelf at home that contains only gluten free food. We have several
> now, but first began with a shelf in the fridge for only gluten free foods
> and leftovers and a pantry shelf. If not that, have pieces of tape to mark
> items of food that have no gluten anything that helps in indicate to others
> what it is and is for. "Use the pasta with the tape on it for my dish
> because I am allergic to normal pasta" is easier to relate to others.

A final thought, make it a point to go out to eat and explore food with your
family! They'll only grow comfortable to you asking questions of the food if
they are exposed to it repeatedly. My family always looks at the menu's ahead
of going to a restaurant, but even at the most bread heavy of spots she finds
a salad, soup, or steak that suits her desires.

Don't worry too much and know that it won't ruin all eating for you! Just find
the right set of questions to ask and the best ways to translate it to others!

------
rs23296008n1
Related to celiac:

If you want a similar rabbit-hole, have a quick look at what the thyroid can
do if its low. A fault in the amount of T4 / T3 the thyroid puts out can
disturb your head, heart, sleep, exercise and a host of other aspects. Gluten
has an effect.

If you're celiac make sure you've had your thyroid function checked and tested
as well. Blood tests at least.

------
proverbialbunny
I know how hard that can be. It's all about quinoa or potatoes, and then
building a meal around those. Eg, fish or a meat and mashed potatoes with a
side of veggies is super healthy, gluten free, and super good. Or, if you like
more Asian tasting foods, you can make a curry and instead of over rice do it
over quinoa. Quinoa is cooked the exact same way as white rice, in a rice
cooker, but it can be cooked with broth, not just water, which allows the
quinoa to be paired to the meal. Eg, beef broth quinoa + thai yellow curry
chicken can taste better than with rice.

In the US there are tons of gluten free options in super markets, from gluten
free hamburger and hotdog bus to gluten free dinner roles, and within the last
5 years or so some of the new gluten free breads are shocking. You wouldn't
know they're gluten free. Out here they tend to be in the freezer section
instead of with the normal bread because they'll go bad quickly.

I'm not sure if there is any Whole Foods or similar in Luthuania but you can
probably find supermarkets with the same mentality. Basically, find the most
expensive grocery store in the nearest decent sized city near you and you can
start there to see what kind of options exist in that area. There are good
gluten free bread options, at least on this side of the world.

My great grandmother had Celiac's, so I grew up on a lot of gluten free home
cooking. After decades of being on a safe diet (she never cared to eat out to
begin with) her Celiac's died down and towards the end of her life she started
to be able to eat gluten again, but we limited it to one meal a week, just in
case.

Back then, all gluten free bread was home made. This is always an option if
super markets are limited. If companies can make absurdly good gluten free
bread today, then there are probably recipes out there just as good, but they
may be hard to find.

So that covers the three basics: rice alternative, non-gluten by default meals
(potato or similar is usually involved), and gluten free breads.

If you've got fresh cod (or similar) around you, I'd recommend starting with
gluten free beer battered fish 'n chips. Making home made french fries is a
lot of fun too, but can be a bit of work. There are some gluten free meals you
can't go wrong with, often better tasting than you can get at a high end
restaurant.

Every day it will get easier. You'll get into a routine and before you know it
you'll have more great recipes than you'll know what to do with.

------
deepnet
[https://celiac.reddit.com](https://celiac.reddit.com)

~~~
arthurcolle
Neat! When did reddit start aliasing subdomains to their respective
subreddits?

~~~
jerf
That's how it used to work; the /r/$SUBREDDIT is more recent.

------
efrafa
I dont have celiac disease, but I buy only gluten free break, as classic break
gives me stomach ache.

I live in SF and options here are quite good.

But I’m originally from Slovakia and to my surprise when I was there last
Christmas, the options there was very good as well.

~~~
jolmg
So, I googled "gluten free break" but I only got back breads. Is "break" a
mispelling of "bread" or is it some type of food I've never heard of before? I
mean you wrote it twice, so that leads me to believe it was intentional.
Googling "break food" returns foods a person would eat on their break, so that
was equally unhelpful.

~~~
copperx
OP probably means "breakfast," where gluten is consumed greater quantities (in
America).

------
sys_64738
The glutton free products of today are so much better than the original
products in the 70s and 80s. Those were truly terrible as you had to replace
everything with glutton in it. It feels so cruel to make a child eat special
foods that their brothers/sisters/parents don't have to eat but the
alternative is they fall severely ill.

People who have or are related to those with Celiac Disease know it's life
threatening and not a joke. That's why it disgusts me when people see it as a
fad or claim they need to eat glutton free for health reasons. They are
clueless.

------
geocrasher
My adult daughter lives at home and has celiac disease. We live in the US near
Seattle. She must carry an epi pen and even the slightest cross contamination
can make her very very sick for several days.

We considered this together and it comes down to a few things. First, remove
all contaminants from your home and if anyone MUST have wheat, give them a
separate cupboard and make sure they know exactly now to not cross
contaminate. I had to learn this after much repetition. When I make a sandwich
on wheat bread, I use about 2x the dishes (spoons etc) than I did before and I
wash my hands about a half dozen times.

For others, explain glitter. It gets everywhere. The only way to not get
glitter on yourself is to go where there is no glitter. Tell them to imagine
that their hands, utensils, pans, etc are covered in glitter. Until it's been
washed by something that's glitter free, then whatever touches it will have
glitter on it. Except this glitter can kill.

Regarding finding a place to eat, be careful- there's places that have gluten
free items, but pay no attention to cross contamination, and then there are
places that simply ARE gluten free and have no gluten. The main question to
ask: "Do you have a separate preparation and cooking area for gluten free
food?" If the answer is no, move on. Call ahead, and plan you excursions based
on these areas. It's also very hard.

This app helps her find a place to eat:
[https://www.findmeglutenfree.com/](https://www.findmeglutenfree.com/)

My wife mentioned something else: Let your friends and family know that Flour,
Wheat, and Gluten are the same thing. You need to be an expert on what has
gluten in it. If you go to a restaurant, you can ask to see ingredient lists,
and it's up to YOU to determine if there is wheat. Most food industry people
are not trained in this. We once asked if food had gluten in it and got a "No"
after they looked at the ingredients. When we examined them ourselves, it
plainly said "flour" on it. Flour, unless specified to be GF, is wheat.

All of this research can be done online. Be the expert, and save yourself time
and frustration. Also, be bold! If you get a 'rolleyes' from a server when you
ask about GF food, that's a good sign to just walk out. Unfortunately there
are many for whom GF is a fad and they treat it like it makes them cooler than
everybody else. They have done a lot of damage for Celiacs, but don't be
afraid to set yourself apart from them. "I know it might seem difficult, but
if I my daughter gets gluten, she goes into anaphylactic shock, has to epi pen
herself and then spend the night in the ER. She could die."

My daughter sometimes sets her epi pen next to her! One server brought her a
salad with croutons on it- when my daughter explained the problem, she simply
picked the croutons off and brought it back! My daughter decided to get her
epi pen out and show her how to use it so that when she started dying, she
could epi pen her. That straightened things up quick!

Best wishes to you and your family!

~~~
husarcik
This sounds like a wheat allergy as Celiac disease does not present with
anaphylaxis. It doesn't mean a person cannot have both conditions. I can
imagine it must be difficult explaining how serious the reaction can be as
most people think wheat allergy is the same as Celiac disease. The immune
response is quite different [1].

[1]
[https://www.ncbi.nlm.nih.gov/books/NBK536992/](https://www.ncbi.nlm.nih.gov/books/NBK536992/)

------
jerf
I do.

One, obviously, avoid wheat entirely. I probably don't need to say it, but
I've had some family members who tried to just "reduce". It doesn't work.

Two: You may not know things like this exist, because they may not just be on
the shelf of your local pharmacies:
[https://smile.amazon.com/dp/B00CHQAM08](https://smile.amazon.com/dp/B00CHQAM08)
Now, the box is basically a lie, inasmuch as you can't just pop one of these
pills and then eat whatever you want. However, if you have reason to think
you're going to do something questionable (such as, say, have the part of the
family that doesn't really keep the gluten separate, or go out to eat
somewhere), I'm about 99% confident this stuff really does work and can help,
even if it doesn't "solve" the problem. You can even take it an hour after you
eat, once you realize what has happened, and it will still help. Won't solve
everything. But it helps. Sometimes the "use by" dates are very conservative
on things; for these I've found these do tend to go bad quickly, and they may
cause minor digestive distress downstairs, if you know what I mean; still
worth it.

Three: In my personal experience, the _real_ problem with celiac isn't "I feel
ill when I eat wheat." That is, ultimately, just an inconvenience. The _real_
problem in my life is that I have difficulty absorbing nutrients, even after
I've long since stopped eating wheat. My big challenge has been what I'm
fairly sure is "paroxysmal atrial fibrillation", which I didn't realize was
trashing my sleep for years, to the point where I couldn't even get to sleep
anymore without my heart doing all the things (PVCs, skipped beats, hard
beats, bleh). The doctors I went to declined to diagnose me, but it worked out
because they'd probably have thrown pills at me. I now take fistfuls of
vitamins several times a day. It looks rather scary, but for me has been a
life changer in a good way, and when I don't do it, I immediately suffer. I
would advise reading up about vitamins and minerals and their various symptoms
of deficiencies, and considering trying some of them if any of them strike you
as relevant to your life. In general, a place like HN will say that
supplements should generally not be necessary and you should just eat well,
and while I _generally_ agree with that, you _specifically_ have strong
Bayesian evidence to consider that you may find certain supplements may help
you a lot.

As far as I know, while there are studies that establish the general truth of
what I've said above, there are not very many _specific_ studies that discuss
which nutrients you are specifically likely to be missing. My _personal_
experience is that I really seem to have trouble with the minerals, though
I've also had good experience with taurine (with its friend l-arginine, heart
related), vitamin A (didn't help my heart but it gave my immune system a
_huge_ kick in a good way), and vitamin K (with its friend D). YMMV. If you
specifically have a heart issue, reach out to me (see HN profile) and I can
get more detailed; it's a bit long to put on HN. If you don't specifically
have that issue, you'll have to explore on your own. Or maybe you have it
relatively lightly compared to me; my father has a much less strong version of
it and does fine on a small subset of what I have to take. If this is all
foreign to you, and you sleep great and have no issues, just ignore me and
count your blessings.

Oh... and my #1 food-I-missed was cheesecake. New York style, rich as can be.
If my wife says "I can't eat this, it's too rich", it's just the right amount
of rich. Fortunately, it doesn't really need wheat. Here's my recipe, which
I've been updating over the years:
[http://jerf.org/Cheesecake.txt](http://jerf.org/Cheesecake.txt)

------
molmalo
Hi. My wife was diagnosed about 6 years ago. We live in Argentina and we lived
1 year in the USA in the middle.

She was totally asymptomatic, and was tested because she has hypothyroidism
and it seems it's pretty common that both conditions come together. So, the
doc ordered the tests: first a blood analysis that came positive, then an
endoscopy to confirm. From what I've heard here, for every diagnosed person,
there's about 8 people who have not been diagnosed. But at least here, health
professionals are getting aware and more people is getting properly diagnosed
nowadays.

Luckily for us, Argentina is a very celiac friendly country. A few years ago
(coincidentally, about the time my wife was diagnosed), a law was passed that
demands all products to inform if they contain gluten or not, and there's A
LOT of gluten free products available everywhere that are identified by a
standardized logo.

In Buenos Aires, there's a lot of restaurants selling exclusively gluten free
food, and for the rest, almost everyone has gluten free options. Many of
those, even design a separate space in their kitchens and utensils for gluten
free food, to ensure there won't be cross-contamination. I believe this was
achieved thanks to the free courses and consultancy given by 2 NGOs founded by
celiac people.

As for the difficulty to educate other people about this, I believe it happens
mostly with older people, as it was not a commonly diagnosed disease not long
ago, so... sometimes they might at first look with suspicion or disbelief, but
then after explaining them exactly what's about.. they understand, but need to
be reminded anyways. So, if it's family, it's better for the first
months/years to take your own food when visiting them, or helping them to
cook, as it's a perfect opportunity to teach them.

One of my best friend's daughter was diagnosed when she was a 18 months old
baby (she felt badly, was having trouble gaining weight, etc). She is now 4
years old, and super healthy after following a gluten free diet since then.
You'd think it would be hard for her... but it's incredible when other kids
offer her something, she immediately looks the package for the logo, if she
does not see it, she politely rejects it (or if unpackaged, she simply asks if
it's gluten free), as she knows it would harm her otherwise... Her
kindergarten teachers are aware and pay attention other kids won't contaminate
her food, so all has been OK so far.

In our home, we usually have for dinner the same food, but for some stuff like
pasta or pizza, I usually cook my food separated from hers, as I prefer the
"regular" wheat pasta. She does not have trouble with it. So, in those
specific cases it's a little more work when cleaning the pans, but that's not
much of a problem.

I hope this was helpful!

~~~
101008
I can confirm this, Buenos Aires is a very friendly city for celiacs.

