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.
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
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.
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.
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 :)
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.
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)
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/
I just went to the 4 year celebration this weekend of my favorite Brewery: 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 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
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/ which tests for gluten in food.
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...
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.
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.
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
1) https://www.newyorker.com/magazine/2014/11/03/grain
3) https://www.barilla.com/en-us/product-results/pasta/range/gl...
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.
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.
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.
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 :)
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!
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).
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.
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.
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.
Or maybe there's stuff like that out there already that we'll be able to share with gretar, in which case, even better!
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.
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!))
> 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!
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.
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.
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.
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.
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/
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!
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 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
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!