There is no manual for living with celiac disease. No how-to guide to navigate your new life.
I assume when you received your diagnosis, you got pretty much the exact same instructions from your doctor that I got from mine: Don’t eat gluten.
So we walk out of the doctor’s office a bit terrified of our new life in front of us, but feeling a bit relieved that all we need to do is give up gluten and we’ll be just fine.
But damn…here I am six years later and we all know it’s just not that clear cut.
What we need is a how-to guide that covers all of the emotional, social and physical aspects of living with celiac disease. We need something so that those diagnosed with celiac disease in the future have a go-to resource on how to cope best with their new life.
Well guess what…we as a community are going to create that how-to guide (and no you won’t be getting paid).
Here’s my plan…after reading the below email I received, I’d like you to include some tidbits of information that you wish you knew when you were first diagnosed. What advice would you give to the newly diagnosed? Not necessarily what foods to avoid because anybody can look that up. But what have you YOU learned from living with celiac disease that you wish you knew when you were first diagnosed.
When it’s all said and done, I will create an eBook called “Celiac Disease: The Manual” and make it available on my website and Amazon. How cool is that???
Keep in mind…the idea of the book is not only to educate but to empower; to give those newly diagnosed the strength and knowledge they need to get busy living.
Just one request…no fear mongering please. That’s not helpful to the newly diagnosed.
Ok…to kick things off, here’s an email I received that actually gave me this idea. It has some phenomenal advice in it.
What can you add to it??
Dear Gluten Dude,
I’m not sure if this is a rant or what it is so I’m just going to let it flow!!
Its been a year and a half since my celiac diagnosis, I have just found your blog, and I am obsessed. I feel like I’ve finally found something that describes how I feel most days, an unusual and indescribable mix of empowerment (through my diagnosis and “self managed” disease), overwhelmed, frustrated, happy, healthy and sick. All at the same time.
I wanted to write to you about the things that no one tells you about having Celiacs or an unexplained gluten intolerance. Some are good. Some are bad. But there is no manual. There are very few doctors who understand. And depending on where you are in the world (I am in Australia), there is so much ignorance and misinformation. It can be difficult and frustrating and isolating navigating it alone.
Some of the things that I wish someone had prepared me for:
- From day one, your illness will be trivialized. From the doctors who diagnose you, who can make it seem that going gluten free is the easiest thing in the world, to anyone you speak to who tell you “there are so many gluten free things on menus now, there’s never been a better time to do it” (like it was a choice), to the waiters that roll their eyes at you. Rise above it.
- It is surprising and alarming how many food professionals have absolutely no idea what they are putting in to their food.
- Some symptoms will lift immediately. For me, the migraines (which I didn’t realize were related until after they stopped), the extreme bloating and pain ceased very quickly. Others will take awhile. Be gentle. Know that your body will take a while to recover and that is OK.
- A lot of people go “Gluten Free” for weight and diet reasons. You very well could gain weight. I personally have been severely underweight for a long time. I gained 7.5 kilograms (16.5 pounds) when I stopped eating gluten. Roughly 15% of my body weight. Even though I was now eating a lot less, my body had not been absorbing what I had been eating. Weight gain was a very unexpected side effect!
- There will be a break down of some or many of your relationships. This illness can be debilitating and socially ostracizing. Either you will tire of the people who tell you how they eat gluten free for “health reasons” and its SOOOO easy, or they will tire of you, because you are now a “burden” at social engagements.
- You will spend a lot of time apologizing for your illness. Over time you will stop doing this, but particularly in the beginning you will feel like a burden. Sometimes its easier not to eat than it is to “cause a fuss”. If any one makes you feel like this – it’s easier to remove them from your life than it was to remove gluten so feel free to do that.
- Research has indicated that there are significantly higher levels of depression and anxiety among those with Celiac Disease, in particular young adults. Celiac disease is 24 hours a day, with no end in sight. Most days it is OK, and you get used to it, but you cannot switch it off, you are constantly in a state of high alert, because anything that you put in your mouth can make you sick. More knowledge and awareness and comfort will lesson this, but it will never go away. Do not let it consume you.
- Check the ingredients of EVERYTHING. Gluten is a filler and hides in the most unexpected places. Some recent places that I have found it – Oral Contraceptive pill, Cold and Flu Tablets, and other medicines. Again – Ignorance from medical professionals mean that you can and will still be diagnosed with tablets that contain gluten. Always always always double check.
- You WILL start to feel better. Your eyes will become clearer, the fog that you felt in your mind will lift, the migraines will end, the pain will end, any nutritional deficiencies you had will even out.
- There is something empowering about knowing that you don’t have to take medication, and you can (to a large extent) control this illness.
- While you will lose some relationships, you will gain others. You will gain a new appreciation for people who have a basic respect and thoughtfulness for you, and the little things will become big things.
- There will be some long days, and hard weeks that turn into months, but you will discover a strength you didn’t realize you had, and instead of feeling isolated, and isolating yourself, you will search deep into your own soul and the values of those around you, and surround yourself with people who make you feel exactly how you should – that celiac can suck, but it is not your fault, you are not a burden and you are not alone.
I was wondering if you or any of your readers had any other things? The things that having this disease has taught them.. Good and bad?
Thanks again for the blog; finding it came at a time of a lot of soul searching and reflecting and it has really helped, and I’m sure it has done the same for others.
Ok future book contributors…what advice would you give to the newly diagnosed?
(Dude note: I should add that there are a number of wonderful books on the market about celiac disease. The idea is that this one, instead of coming from one voice, will come from hundreds of different voices.)
They hit the nail on the head. The Celiac diagnosis is not as easy as “just” removing gluten from your diet. But, it really and truly does get easier and that is a fact. Knowledge is POWER especially with this disease. I was diagnosed 6 years ago and I can say with 100% certainty that it does in fact get easier and better every single day. (I wish someone had told me that.) I do not find my diet to be that tedious and troublesome anymore. In fact, I rarely even think about the fact that I am different from anyone else. Why? Because I know my diet inside and out and am always prepared. I never go without, I plan and prepare meals, know which restaurants I can eat at safely and know how to pack food for travel. It took time to learn these things, but once you do it’s not difficult. The thing that helped me the very most after grieving the fact that I’d never eat the same again was to look at all the positive things about my new lifestyle. And there are a lot of positives. Attitude is everything in this journey and there’s no other way to say it. Keep your chin up, don’t apologize for having a disease that is out of your control and find new foods you enjoy that are also healthy for you. Don’t obsess about the cost, it’s your health! And, if you buy foods that are naturally gluten free you’ll be way better off anyway than buying prepackaged and processed gf foods. Fresh fruits and vegetables, meats, cheeses, wine, etc. are all gluten free and fantastic! Keep it simple and learn to enjoy whole foods.
This was an awesome post and absolutely true! It is the responsibility of the diagnosed Celiac to educate themselves and learn the diet, just as someone with diabetes has to do the same.
Knowledge is indeed power and you will heal better when you really know how to do the diet correctly. Mistakes become rare and life goes back to normal….only without the sickness part.
Wonderful idea!!! Also, wonderful email!!
Some ideas that come to mind from me…
You will link so many different problems to Celiac that arise. Issues that you thought were separate and just how your body works… good chance they’re part of the effects of the disease. I thought Celiac was mostly my dermatitis herpetiformus… turns out it’s linked with fatigue, nerve and mood issues, insomnia, cramping, bloating, etc
You will be humbled by food and appreciate your body more. After my diagnosis, I went the ‘going back to basics’ route with food. Focused on making my own food from base ingredients… fruits, veggies, meats, baking my own goodies etc. With that comes a new and humbled appreciation for food and for your own body. I became more connected with my body and wanted to care for it better and more naturally in every way.
It’s a learning curve. Take it slowly and build on your knowledge base. You will make mistakes, and they will be painful. You learn from them though and move forward until it’s second nature.
While some friends/acquaintances will be rude and refuse to understand, others will be amazing and go above and beyond. I have friends that are so considerate in the simplest of ways but seem like the world to me. Those are the special moments.
You realize that most of the world/companies/media etc doesn’t care. Those that do are special and will be appreciated, but the rest couldn’t care less. You have to advocate for yourself and look out for your best interest. Trust yourself and stand up for yourself.
Can’t wait to see this come together!!
It is so important to be your own advocate. If you think something is wrong, FIGHT for your doctors to hear you. I was almost not diagnosed because of my doctors. I’ve had a strange relationship with food where I have close to no appetite for most of my life. I would pick at my meals, saying that I didn’t feel well. My parents thought I was trying to get out of eating. Then after college, I started getting ill for no reason. It wasn’t often enough that I thought gluten may be the culprit, but the spells started getting worse.
One weekend, I was out with friends celebrating my one year wedding anniversary. I ordered something I’d eaten a hundred times–fried calamari. I have never been that sick before in my life. I couldn’t eat for almost the entire month of July. I had to go to a medical clinic because it was a weekend, and that doctor told me that I had a stomach virus. I disagreed with him, so I saw my GP on Monday. She told me it was acid reflux. When I told her that I had been keeping a food diary, she said, “I don’t care what you’re eating. What you’re eating doesn’t matter.”
After I consulted a gastroenterologist, my GP’s office called me to harass me, saying that Dr. Know-it-all already gave her opinion, I don’t need to see anyone else. And then they refused to send my medical records. My GI was the first person who asked me what I thought was wrong. When I told him that I thought I might have celiac disease, he said that he disagreed with me, but that he would test for that. And wouldn’t you know I was right? Moral of the story is, sometimes you have to trust yourself. If your doctor isn’t listening to you, it’s time to find a new doctor.
A to the Men, sister.
My biggest realization was that I actually could re-learn how to cook. Not only cook, but actually bake. Like, cakes and stuff. I had only attempted baking a few times before I got diagnosed and it always turned out horribly. Otherwise I was a decent cook, but baking had always eluded me. And the thought of never being able to have cake or brownies or cookies ever again was too much. Also with this disease being hereditary and having two small children who might develop it one day, above and beyond all else, I wanted to make sure they never feel deprived either. So I bought some Betty Crocker mixes and I learned. I can now make homemade icing and actually decorate a cake pretty well. I’m about to start buying different flours and experimenting with my own mixes. None of that would have happened if not for this disease.
So I guess that’s what I wish I had known when I was first diagnosed. That I could and would be able to re-lean how to cook and still eat well. And that with a little time and effort, we can do pretty much anything we put our minds to . 🙂
*re-learn
I did write a book, but it’s probably not cool to promote it here. The part about feeling better and the fog lifting, really resonated with me.
I could add that very few people will believe that it will help them and will roll their eyes if you mention gluten to them more than once. I never say anything anymore.
It kills me though because I want to help.
I was extremely overwhelmed after being “officially” diagnosed with having celiac. I live in a small town in Indiana so I have had a lot of interesting hurdles to jump. Firstly, NO ONE knows what celiac disease is here so I have not had an awful lot of support (Thank the Lord I am only an hour from Indianapolis) also I don’t have many food options in stores or in restaurants here! Luckily I have learned to really take advantage of healthy foods that are naturally gluten free. Having celiac disease can be very alienating…..people don’t understand why I cant just eat eat at there house if they attempt to cook gluten free? I try to explain that when I cook I read the label on EVERYTHING, and that I can’t be exposed in any way to gluten which sticks to pans, bowls, cutler, grills, and counter tops! They think I’m being dramatic or at the very least an alarmist but I have learned in the 4 short months I have been diagnosed that being polite and maintaining the status quo is NOT more important than my health! It’s very hard to have a disease that is not taken seriously, prior to my diagnosis I spent two years in misery feeling like I was going insane…..doctors and loved one’s treated me like I was making it all up and that does something to a person. So then you get a diagnosis of celiac and many people still treat you like your loopy, you hear “Isn’t that a made up disease?” or “It’s just an allergy!”. It is very disheartening! I had to learn to stand up for myself and that people can only make me feel crazy if I let them. Use your diagnosis as a positive…there is always a silver lining. I learned so much about myself after being diagnosed. As a woman I feel that we are taught to self loathe and when you start taking care of and listening to your body, advocating for yourself and your disease, and vocalizing what you need to treat your disease….you start to love yourself. I’m important and worthy of good health. I refuse to eat at a cook out or family dinner and be sick just to make others more comfortable! I refuse to not ask a restaurant to not take extra care with my food so that they aren’t inconvenienced or so that the people that I’m eating with don’t feel uncomfortable! Take care of yourself!!!
Advice to the future members of our Celiac community:
As someone who was diagnosed 5 years ago at the age of 15, I wish I had a manual on how to navigate life while dodging the enemy we call gluten. So this is 5 THINGS I want to let you know about:
1. Life goes on, but gluten stays behind – You are going to feel angry, frustrated, and nervous after finding out you now can’t eat some of your favorite foods, and while you may think “life as you knew it is over,” you need to change your mindset and focus on what you CAN eat verses what you no longer can. It will make a huge difference.
2. It takes TIME – Nothing comes easy or fast, and you’ll realize that with this diagnosis. Patience is probably the hardest part because you just want to feel better NOW. Take it one step at a time, and know that things will start to become second-nature to you quicker than you thought!
3. Know you have support – No question is a stupid question, if you are having persistent symptoms or don’t know if something is gluten free.. speak up and ask! Everyone in this manual has been where you’re going, and we are all in this together! The support you will get will be unmeasurable, and necessary!
4. Try different brands – Eating gluten-free can be like trial and error when it comes to different brands. Try different gluten-free foods and find whats satisfies your taste buds! There is an equivalent to everything nowadays of the foods you once loved, you just need to be willing to TRY!
5. Don’t ever let anyone tell you that you are overreacting, other people have it worse, and you’re just being dramatic. Celiac Disease can be painful, it can be isolating, and it is frustrating, but it will make you a stronger person at the end of the day! The Celiac community is an amazing outlet, as I have found, and we strive to inspire each other to keep going and eating healthy! There will be a day in the near future when we are all celebrating a cure and until then, just keep staying positive! 1 in 133 people are just like you and have your back, we support you!
So keep on keeping on 🙂
I’d definitely add a “Don’t panic!” section.. More specifically because your first thougt when you’re told not to eat gluten is “Ohshit, what do I eat now?!” because after being gluten free for several weeks I can honestly say there’s so much more options then you initially think. (Plus a lot more healthier if you ignore the sugar filled boxes at the store.)
I’m curious to see how you will promote this “guide to proper gluten free” book. And I’m certainly thinking of purchasing one. 😀
I like the don’t panic section! When my doctor first called me and told me I needed to stop eating gluten the only two foods I knew didn’t contain gluten were rice and chicken. It was a busy week and I had no time to learn anything about gluten so I only ate chicken and rice for the first week because I was terrified!
I’d say, if you don’t love cooking, learn to love it. Start experimenting with different ways to prepare foods that are very tasty to you. Also, Don’t take any food for granted. I made a lot of mistakes along the way eating foods that would normally be gluten-free but we’re not. Above all, be kind to yourself when you mess up and get sick. It sounds like an easy task to eat gluten-free, but it is far from easy sometimes. Most people working in restaurants don’t have a clue, even if the menu does say they have gluten-free choices. And, carry extra clean underwear wherever you go!
This is centrally important for us, at any stage really. But…what if the l-o-v-e just isn’t there? Ideally, we love it, and it’s not an almost dreaded, definitely endless chore. If not though, it’s good to realize that it’s pretty scalable to your level of tolerance. Meaning…there’s going to have to be food prep, but it can be reduced quite a bit without sacrificing the whole food theme.
I’ve encountered some hurdles along my way to a working process. Relying on store prepped fruit for smoothies was not a good idea, I don’t think, because the prep safety (cross-contamination) can’t be verified satisfactorily. So I make a small scaling adjustment, just a small one, by resigning to the fact that I’ll need to make a few more regular trips to the markets for cantaloupes, bananas, pears, and all those delicious & nutritious, but perishable fruits. I don’t love to do this, but I do l-o-v-e love having a kitchen full of fresh, almost instantly available fruit/food. This is just one example.
To me, learning to love to cook is like learning to love anything. How does one learn this apparent skill, loving something as the needs presents itself? I’m sorta thinkin’ it’s not gonna happen with elbow grease. So, revise goals and include a possible solution set that you can embrace on your own terms.
You may be more sensitive to gluten than some other Celiacs. You’re not nuts. Don’t let them bully you.
This is the one that’s been the worst for me. It seems like I’m super hyper sensitive and am starting to wonder if I really am crazy after all.
You aren’t crazy! Important lesson for all with Celiac is to understand that we are still different.Just as no two snowflakes are exactly the same neither are people. And those with Celiac need to know that, while the journey to wellness has one of the same requirements of us, there may be numerous things that we all are affected by differently. Some find out they have other food intolerances, as well, and end up on a more strict diet, some have gone so long being sick that their body has a much harder task than others to completely heal. And some have so much damage that they might not completely heal. The key to all of it is to not allow any of it to make you feel hopeless. Yeah, some days may be bad and some good, but life is like that for everyone, even people without Celiac. Seek out those who want to help you when you are down and celebrate with you when you aren’t. Celiac has so many different faces. Don’t allow any one of them to make you feel bad if you aren’t doing as well as them on the gluten free diet. So many different symptoms with this disease, and sometimes, no matter how hard you try to do everything right, in the end, it is your acceptance that maybe you won’t have perfect health with this disease which will help you the most. We are ALL different. Even in our Celiac sameness.
You will be told by well-meaning friends that they know so-and-so who had to go gluten free for 6-12 months, but was then able to resume eating gluten foods. Thank them for their concern, but tell them nicely that you can never again eat gluten foods because of celiac disease. At potluck dinners, you will be asked if you can eat the meat, veggies, salads, etc. and just avoid the breads and desserts. Again, they are well meaning, but they do not understand that those items may have been chopped on a cutting board that was also used to slice bread, or cooked in a non-stick pan or with a plastic utensil that had also been used for gluten foods, or has a sauce with some added ingredient in which gluten hides. Again, they are well meaning and they want you to enjoy the food they and others have prepared, like you have done in the past. I now bring my own to those events because I like being with the people and they have quit asking if I can eat the food there because they know what my answer will be.
Hi all.
I live in Brisbane, QLD, Australia.
I was diagnosed with Celiacs when I was 14 years old. I am now 26 and have been happy and healthily living entirely Gluten Free the whole time. When I was first diagnosed, I could not 100% tell if my symptoms were from Gluten contamination or just being a teenager. Nowadays I have it down to a fine art. I know usually within 60min if something I’ve eaten/touched is going to make me sick. Gluten effects me much more severely than it did 12 years ago.
Send me a msg on Facebook, I’m happy to answer any questions people might have about living Gluten Free or Celiacs.
https://www.facebook.com/IndyB47
When I was first diagnosed I cried so hard! I couldn’t bear the thought of having to take care of myself. I am one who takes care of others. The first visit to the doctor after diagnosis I was told to make an appointment with a dietician. Insurance does not usually pay for this so I searched the web and found Gluten Dude! I also typed in Celiac Disease in the search bar on my computer. There are many websites to look at and advice offered. My disease manifested in mal absorption of iron and other nutrients. As a result of going gluten free I feel so much better. It has only been a few months since diagnosis but feeling better is so nice!
My contribution is to give yourself permission to grieve – the loss of your life as you now know it, the uphill battle with friends and family to come (“No, Grandma, I can’t use the same tub of butter”), the radical changes coming your way (no more picking up Chinese takeout when you’re too tired to cook). If you try to repress it at the beginning, you’ll wind up standing in the middle of the grocery store, bawling your eyes out because you’ve just read a label and realized you can’t have one of your favorite foods anymore.
But it’s just as important to move on from grieving – the radical changes coming your way DO include feeling better, knowing who your true friends are, and learning about lots of delicious food you might not ever have looked into (quinoa, anyone?)
So yes, feel sorry for yourself for a bit, and then you’ll have the energy to pick yourself up and start making the changes that need to be made.
I agree, this is a really important one. I was diagnosed 12 years ago. Before Gluten Dude, there wasn’t much out there that really resonated with the isolation and misery I was experiencing. Everyone just gushed about how “lucky” I was to have such an “easy” disease (of course, these were all people who could stop for pizza on the way home…). But it is a loss, and you do grieve. One of the most strangely comforting things I did come across back then was something a GI had written online in which he said that some of his newly diagnosed patients actually became so depressed trying to get used to the diet and their new situation, that they were suicidal (keep in mind, the only pre-made gluten-free “bread” you could buy back then tasted like cardboard dog biscuits). I wasn’t suicidal, but, finally, someone was acknowledging that this is, really, a source of considerable emotional pain.
Also, if you come from a culture in which food is a very important part, that adds to it. I’m Jewish, although not religious, nor do I even consider it to be a big part of my cultural identity these days. But I did grow up in a very Jewish neighborhood. About a year after the diagnosis, a program came on the radio about the importance of food in Jewish culture. They went on a tour of some bakeries and began describing all the things from my childhood that I knew I’d never eat again. My mind was conjuring the aromas as I listened. And I suddenly found myself sobbing uncontrollably like I hadn’t since someone close to me had died. Doubled-over, grief-stricken sobs. It still makes me tear up to even think about it. I was, and am, surprised at the depth of my reaction. As all of us know, it’s more than just the food. It’s the whole social experience that surrounds it. Nobody tells you that this disease will not only make your life inconvenient and turn you into a social pariah, but that it also strips away connections you’d had to your own heritage.
Well said. The symbolism of breaking bread together is as old as bread itself. It’s hospitality, it’s a human connection, it’s a gesture of peace…and it’s something we can no longer participate in, unless we ourselves engineer the event. People never think of that aspect of it. Even taking religion out of it, there are shared cultural experiences that are taken away: wedding cakes, holiday cookies, baseball game hot dogs, classroom pizza parties. My family is Eastern Orthodox Christian. We have special bread for everything. Even funerals have a special dish, made from wheat berries, of all things, and so even in mourning, we are excluded.
There are books upon books devoted to the idea of how food brings us together. How in the world do people not see the potential for pain with this disease?
Thanks Katie. All so very true.
Thanks, Katie for bringing up the religious aspect. If you are Christian and take communion, you will need to see if your church offers gluten-free hosts. Some Catholic churches refuse to do this and insist that celiacs take the wheat-based host; check with your priest. Other denominations have different ways of dealing with this issue, so you would need to speak to the pastor or minister. You may have to order your own GF hosts and take them with you to the service in a small container that will protect them from gluten. Some pastors will let you keep the GF host with you and bless it at the Communion rail, others want it at the altar when they bless the gluten host. You will also have to find out if the people setting up Communion wash their hands before handling the GF hosts and if the person giving you the GF host is the same one giving the gluten host to everyone else. You will no longer be able to take wine from the common cup or by intinction. Communion used to be easy. Now it is difficult. Sometimes, I have to not partake and it is difficult to be excluded from something so important to me.
True, sometimes you get the well-meaning pastor who takes your GF wafer and “tucks it in on the side” with the regular wafers. Then there’s the pastor who has a wife with a severe nut allergy who sincerely gets it, and makes sure your wafer and personal ‘wine shot’ are on a small paten at the altar. No intinction worries.
Thank you! I am newly diagnosed and am also Eastern Orthodox. I have communed only 2 times in the last 5 months, just incase, while I heal. I never knew to ask about this! I love this blog. It has helped me through this in so many ways!
Pastors don’t automatically know how to handle the gluten free hosts. I have had to educate my pastor (and the people who do the prep) several times on how to do things properly to keep those of us with Celiac safe. My pastor is a wonderful person and loves to learn and is always grateful that I will take her aside and explain the situation to her. She knows that my time and effort are making the experience at our church better for others with Celiac. We are a team! I would recommend that people take the initiative to start the conversation if it isn’t done in a safe manner yet.
Bear with me, with the many religious and gluten traditions in my family. I basically was uninvited to passover because I requested no gluten matzo or a gluten free matzo – keep in mind I’ve been diagnosed for four years and still haven’t had a normal blood test in which my antigens aren’t raging so I’m extra careful. That’s my non-Jewish father in law who had to have wheat based matzo. My sister managed to turn our previously mostly gluten free dinner into a gluten festival filled with 2-4 year olds who were happy to spread gluten everywhere. Now she’s a paleo. And yes, I am working on the grieving aspect – I think it’s important to recognize what we have lost and move on and then recognized it again when it comes on – hello, bitter energy because I can’t drink a beer or eat whatever it is I think I might want to eat or whatever everyone else is eating- I see you – I hear you…. Ok, I’m over it, – oh, wait there you are again, but at least I’m not too tired to recognize you – I see you – Oh, yes, I see you. Oh, and at least I don’t have a rash anymore. And I’m slightly less susceptible to mental confusion – what was I saying again? Right, I’m grieving, well, or maybe not – it is up to me… or is it?
If you have the non-traditional symptoms from Celiac, you may have an even harder time working with doctors and mental health professionals to get a treatment plan together. Some of my biggest symptoms were behavioral, and I eventually went into therapy to figure out how to deal with these symptoms. While my therapist was open minded, she suggested that I consider taking antidepressants. I was willing to explore this route, but I think she and the psychiatrist that I went to to discuss medication believed that my depression had nothing to do with celiac (and a string of unintentional glutenings). This made it hard to discuss a plan with them, since I felt that my worst depressive episodes happened after being glutened, and they didn’t see the connection. Anyway, I wish there were more studies regarding depression as a symptom of celiac. There are studies regarding how celiac patients are depressed because of their diagnosis, but I haven’t found anything regarding depression as a symptom of unintentional glutenings. I personally struggled with whether to take anti-depressants constantly for symptoms that will only show up if I get glutened. In the end, I decided to be incredibly vigilant about cross-contamination rather than take the meds.
The non-traditional symptoms do make things more challenging. Between the fact that many doctors are years behind the research and that new discoveries about this disease and other gluten intolerances are continually being made, you do have to be your own advocate. Listen to the doctors, but then listen to your own body/mind. If something is not adding up or they don’t seem to be hearing/believing you, find another doctor. You may even want to bring in what you have learned about this disease (try to find actual medical research to be taken seriously…lots of resources on this blog listed by other members) to your current doctor. Don’t be shy. Be willing to collaborate. You’ll have to take some ownership of your own healing. It might sound scary, but it is actually empowering.
I love the e-mail and love the book idea.
-Allow yourself to mourn the loss of gluten, the “before celiac” pots/pans/storage containers. Removing all this is like a death. Allow yourself to grieve…you really will feel better and empowered after all.
-Relationships with family members will be affected…it’s an adjustment for them (especially if living in the same home) and they may not really understand. Educate yourself so you can help educate others. Knowledge really is power. There will be those who resist learning more about celiac…just move on from them.
-It may feel like your entire life revolves around food and eating safely. It may actually be true. Those with other illnesses/diseases have a heightened awareness about what makes them ill. Paying close attention to what you eat is no different. Think of it as saving your own life…your new mission.
-It is okay to decide not to go somewhere because the thought of ensuring safe food is overwhelming. Just be sure this doesn’t become a habit. Celiac disease can be very isolating but it doesn’t have to be. Carry a little soft cooler with food all the time. I bring my own food everywhere just-in-case. I used to feel bad but hunger hurts more.
Of the most important things for me….celiac disease is covered under the American’s with Disabilities Act. You can bring your own food where ever you want (in the U.S.A.). You may need to call in advance…pre-plan but you can do it.
Advanced planning is part of your life now (as much as food is). Being spontaneous may be difficult but being healthy and having quality of life is so much better. Take a few minutes to pre-plan and everything else will fall into place.
Each celiac experience is different. I was 45 when diagnosed and never had abdominal issues. I was, however, malnourished with a host of other issues. Try not to compare your experiences those of others and pay no attention to those who do. Celiac is harmful to your body no matter what the symptoms. I still have a family member who tells me her friend has celiac but has it “real bad,” much worse than my “mild” case. You don’t have a choice as to how others respond but you do have a choice as to your attitude. Just roll will it, laugh to yourself and move on.
Planning is one of the hardest things for me to deal with emotionally. I do it, and make it work, but sometimes when everyone else cheerfully volunteers for a late meeting or decides that a quick pizza run will keep everyone sustained through a 14 or 16 hour day and I realize that I will either have to bring a cooler of food or, worse, that I didn’t bring enough food because I wasn’t anticipating a change of plans…it really is tough.
It’s also hard to come up with enough cheap, easy to make foods that travel well, are delicious, etc. Sometimes it gets very boring when I can’t come up with new and interesting ideas for food to pack.
A huge amount of my mental energy these days goes into making sure the pantry is stocked and I’ve scheduled time to prepare, pack, and plan all my meals for the week, since I often have to be away from home for long periods of time.
Kudos to EVERYONE’s comments!! I’d like to add a bit, building on Tori’s #1. I was diagnosed 24 years ago, back in the day when NO ONE, not even doctors, knew what the heck celiac disease was! So there was literally NO support whatsoever. My treatment plan was a 1 hour session with a dietician (who STILL did not know what celiac disease was), 2 pages photocopied from a medical book, and a short list of foods that I COULD eat. Eating out was not an option, and at 26 years old, eating out with fiends (i.e., pizza and beer) was everything!
I don’t know if everyone else went through this, but I definitely saw it after coming out of the end of it:
Grieving. Yes, it sounds dumb, but the reality is that giving something up that you have loved your whole life, is just like losing a beloved friend! I went through all the typical stages of grieving, (from denial to acceptance) and felt all the better for it in the end. But this took me several years, not months.
Afterwards, though, I could enjoy going out with friends, knowing that I was going for the camaraderie, not the food. Salad and wine or soda was just fine, as long as I was with my friends! No one will feel like this for a LONG time, though, and it’s frustrating when people tell you, “You should be happy that there is something you can do for your body to not feel bad.” They don’t tell you that there’s NOTHING you can do for your psyche to not feel bad. Only time can heal the emotional wound that goes along with giving up a big part of your life, and food is a HUGE part of everyone’s life.
1. Re-read labels! Companies change their ingredients all the time!
2. Read labels on food that you’d normal assume would be fine- Just in case. (I found gluten in cottage cheese the other day after I glutened my daughter!)
3. It’s okay to cry in the bathroom at a party because they didn’t tell you there would be cake (If you’d know you could have brought your own!). It’s normal. Let it out, take a deep breath and move on!
4. Gluten-free food always tastes best when you make it at home with your own two hand! Try it! You might suck at it at first but you’ll get better at it and you figure out what you like and don’t like. (Plus it’s a lot of fun!)
5. ALWAYS HAVE SAFE FOOD WITH YOU!!! Always. If there’s an emergency you need to be able to eat safely. Right now I have a protein bar, laura bar, almonds and carrot sticks in my purse. I keep a gluten-free Amy’s mac & cheese (Normally I don’t eat processed food – but in a pinch I will) in the fridge at work in case I forget my lunch. Plus I have a bunch more protein bars in my car. (Having my daughter to worry about makes me a little extra paranoid.)
6. Don’t forget to enjoy life now that you’re feeling a bit better!
I agree, especially the second on your list. I bought a gluten-free food the other day (cookies) that was clearly listed as gluten-free on the front and side. I didn’t think twice about not reading the ingredient list since it was so clearly labeled. The next day I found out that on the back of the box it stated that it could “contain traces of wheat…” ??? Yikes! Hopefully the new regulations that have come into effect will take care of these types of uncertainties. But those older products may be out there for awhile longer. Be an avid label reader. A few seconds of your time, may save you the pain of suffering from the symptoms of being glutened.
AGREE BIG TIME WITH #5 – I do not leave my house without food. EVER!!! It has saved me so many times. I always have
1. packet of peanut butter
2. banana
3. GF crackers
4. almonds
At work, I always have corn tortillas and cheese in the fridge.
AND I never go to any parties or weddings without a Snickers bar or GF cupcake/cake. That is just me because I am a sweet addict. Most of the times I have cried in frustation have been because everyone was eating something sweet and I had nothing!!! NEVER AGAIN!
To add to the “bring your own”…..
Learn how to say “thanks, but no thanks” to the well-meaning person who insisted they made you a special Gluten free dish for the potluck. If you know they understand cross-contamination, it’s one thing, but for me the risk of getting glutened is so great.
I worked with someone who made homemade Chex mix, and made up a special GF batch for me. She went on about the GF pretzles she bought, then mentioned her secret ingredient was soy sauce. I asked if it was GF, and she got all huffy about how it was “sauce” and there was no gluten in sauces. Hmmmmmmm….
On the other hand, my former boss went out and bought new pans and utensils and triple washed the bowls and sterilized the counter tops before making me a GF cake for my birthday.
I agree with all but one thing in #5. I was glutened by an Amy’s GF frozen entree. I then read the box and saw it was made in a facility that also processes wheat. I now never buy anything in a box or can if I see that.
I would say to not stress about the diet immediately. Start out by eating plain meat/poultry/fish, fruits, vegetables, eggs, nuts,potatoes, rice and plain beans. Eat only plain food with no labels or added ingredients for several weeks until the fog lifts from your brain. Then start learning about labels and add one food in at a time. Do not go out and buy a bunch of special GF foods. Do not try to recreate your previous gluten diet. Do not eat out at first or eat at anyone elses house. Give yourself time to heal before moving on.
I really like the not recreating your pre gluten free diet. If you branch out and try new foods, it’s easier to accept that they are gluten free. I have learned to love so many new fruits and vegetables and new ways of cooking, my friends love coming to my house for a healthy meal. I have turned it into a way to entertain while feeling safe and teaching my friends that gluten free can be delicious. After not eating gluten for a long time, when you do treat yourself to some gluten free pasta or bread, it won’t taste so bad because it’s been so long since you had the real thing!
Just want to reiterate that it is extremely important to grieve the loss of food, socializing, and celebrations as you knew it. After you’ve done this properly and it takes a different length of time for everyone (you’re not likely going to get over this after a few weeks) you begin to find foods that make you happy while at the same time making you healthy. A whole new world of food has opened up to me that I never would have thought twice about before. “Necessity is the mother of invention” and this will certainly set your creativity into overdrive. If you love food and love to cook, this is the perfect diagnosis for you. If you don’t love to cook, you will learn. I have found that people are far more understanding of this disease than you might think. Sometimes you feel like explaining it and sometimes you don’t. Don’t ever feel like you have to give Celiac 101 to everyone you meet. It’s your life, live it and be grateful that you are one of the lucky ones to be diagnosed rather than live eating gluten (poison to your system) and continuing to damage your body and mind.
My only real meltdowns have been standing in a grocery desperately trying to find a quick lunch because I wasn’t prepared for the day. It usually ends with a bag of chips and a water….not a healthy choice! I react to 90% of the gf protein bars and cookies so I don’t even try them anymore. Best advice…ALWAYS carry snacks!
I wish I had known that:
No longer eating gluten would provide some immediate relief (like diarrhea I’d had for at least 4 years STRAIGHT stopping within 24 hours!) but that stopping the attack of gluten on your body doesn’t actually HEAL you.
Processed GF food is just not worth it. Grains, inflammatories like potatoes and eggs, and any ingredient that I wouldn’t put into something myself (like yeast extract, citric acid, ANYTHING I wouldn’t use as an ingredient) are an awful idea.
Doctors are highly likely to be completely useless… I’m sorry, I know some of you have found good doctors that know what they’re talking about, but in my experience when it comes to celiac, none of them have been able to give me one piece of useful advice. I spent much of my childhood in doctor’s offices, and when it came to other things (I had surgery for three different things by the time I was 15) they were so-so. 8 doctors to figure out what the cause of my ankle trouble was.
But when it comes to celiac, apparently when you show up in the doctor’s office barely functional and severely malnourished, they just kind of look at you and the best ones say “Well I guess if you say this gluten free thing is helping, just keep doing that.” The worst tell you it’s all in your head. Do you really think I’m paying you to tell me that?!?!
A friend of mine’s two son’s have celiac and were basically used as test subjects at high cost to their health and pocketbook! An example: A celiac specialist has one of the sons try GF oats. The mum went back saying “He got really sick.” His response? “Ah, that’s what I thought would happen…” SERIOUSLY?!?!
The community is where it’s at. Close friends/housemates who took care of me when I would get glutened or when I was severely malnourished even after I wasn’t getting glutened anymore. Family who completely stops eating gluten when I go home because it’s the only way for me to not get sick. An amazing naturopath who taught me everything I needed to know about nutrition and gave me supplements made from whole food to repair each of my destroyed organs one by one in only 4 months!!!! (I had no stomach acid left, a malfunctioning liver and gall bladder, crazy yeast overgrowth, etc.)
Here’s a big one – if you’re going “It’s too hard to not eat gluten, let alone to try going grain-free, inflammatory-free, and processed food-free.” tell me this: Does being miserable 10 years from now because of celiac sound like fun to you? Or would you rather get on with it and start feeling awesome and like your life is worth living? Celiac can drain the life right out of you, but you don’t have to let it. There are ways to get control and reduce the effects of celiac in your life to a minimum.
And if I haven’t said it enough already – please remember that you need to HEAL after you’ve done damage to your intestines (and possibly other organs), you can’t just stop attacking it. That’s like seeing your kid being beat up by a few bullies as you come round the corner to pick him up from school. You jump in and stop the bullies, get him in the car and he’s got black eye, broken arm, and he’s bleeding all over the place. Then you’re like, “Ah well, now you’re grand. Want some ice cream?” Absolutely not! You take him to the ER and keep him in the hospital until he’s recovered! It’s the same with your organs, but because you can’t see them, it’s all too easy to pretend you haven’t done any damage. Take all measures necessary to bring your body back to it’s optimal functioning.
And finally, never forget your sense of humour! Gluten Dude is an excellent example to us all. Keep pushing forward, never give up, and laugh at yourself and the tough things in life every chance you get. 😉
GD-
This post is the best freakin post yet (hell, they are all awesome).
Go figure my advice is to talk (people in Jersey love to talk, usually loud and laced with expletives but I digress). Talk about it, advocate, yourself, your disease to the people that you are around most. For me it is my coworkers. I work in a very large government building so I can reach a lot of people. Over the last two years after I was diagnosed people know me, talk to me about celiac, what it means, what to do, how to adapt. I have urged people to get themselves tested. I think that I have made a difference in my community. However you can make a difference in Australia will help the next person newly diagnosed. It won’t be the “you are allergic to what??” conversation that so many of us are pretty tired of.
Oh, and stock up on Tito’s.
Cheers love!
Jersey Girl
—————————————————————————————
I’ve been learning to live without you now
But I miss you sometimes
The more I know, the less I understand
All the things I thought I knew, I’m learning them again.
“The Heart of the Matter”
Tito’s does seem to have a fan club on this blog.
Just one word,…Costco. 1.75L/$26.99
My advice is prepare for peer pressure. I don’t mean stress about it. Just prepare yourself. Plan what you are going to do or say at the next company potluck when a coworker wants you to try his or her dish and even though they think its gluten-free you watched three other people cross-contaminate the dish with the wrong spoon. Be ready for the next family dinner when Aunt Sally insinuates that a little gluten won’t hurt anybody. From interactions to people close to you to complete strangers, have a plan. Write a list of things you can say. Keep your reasons short, polite, and to the point. If you can make it humorous (not my natural thing). Practice saying it to yourself in the mirror especially if you are the type of person who tends not to speak up for themselves (like myself). You can be courteous and still stick to your plan. Sometimes just repeating yourself (That looks wonderful, but no thank you) is the best way to deal with them. Don’t give in. Oh yea, and have fun at the gatherings! It will take practice, but it will eventually will become second nature.
I think for the newly diagnosed we could help the most by offering ways to take away some of the fear that comes with this disease. Even though it’s not a death sentence, it feels like it at the point of diagnosis. I would offer resources books to read (besides this one obviously), groups to contact, people to talk to. Compile a list of RELIABLE information, but let people know this will be a process of trial and error for them because this disease is different for everyone. Having Celiac can feel so isolating, especially as you watch the prospects of your social life dwindle before your eyes because you no longer feel safe going out to eat. Along those lines, I wish someone would have been able to provide a good script for educating waiters/waitresses/any restaurant staff just what I needed when I went out to eat. It takes a long time to get the confidence to ask the right questions and know if you are safe to eat. Having some questions laid out for me in the beginning sure would have been helpful.
Here are my basics i had to learn that worked for me. might not work for all but worked for me
1. dont tell everyone at first. take time to digest the diagnosis and figure out how its gonna change your life.
2. you dont have to tell everyone. there are people to this day who have no idea (close family members) but at this time i choose not to tell them for different reasons. i choose to only tell people i think will be helpful to me and not harmful. i cannot tell you how glad i am to this day that there are some people i chose to tell at certain times.
3. you dont have to be the post child for celiac disease. it not up to you to make sure everyone understands and educate every waitress you come in contact with. some days you will feel like correcting the person who thinks you can’t eat sunflower seed (flower does not = flour – and no i’m not joking) and other days you won’t. especially at first, just try to take it all in
4. assuming you follow #2 above, those people that you do tell that care about you. USE THEM. they are here to help you. if your boyfriend says to you 20 times he’s ok with giving up having gluten in the house for you accept his offer. he just wants to be supportive and limit cross contamination. lean on people when you need to even non celiacs who cant possible understand
5. LEARN TO COOK ! you just have to. and its not that bad. and yes, you have time.
6. Try not to rely on processed GF stuff. Its mostly crap. Try hard not to just replace everything you ate before with the GF version. pick your favorites and find other things you like instead. Try to eat whole foods naturally GF.
7. Read some so you can get educated but not too much that you drive yourself crazy.
8. Consider a food log. It helped me to identify problem foods since i am overall carb sensitive and it may help you to find a healthy eating plan that works for you.
9. PLAN PLAN PLAN. plan your meals in advance.
10. Know that a lot of the time you will feel like its unfair. it is unfair there are people who can be carefree and just walk into any restaurant and eat and you can’t. But try to remember there are people who have it way worse than you. You can cure your body with just food ! no need to rely on doctors and medicines with crazy side effect. Ask any cancer patient….if you had to simply give up a food group to get better would you ? i bet you can guess the answer !
“Check the ingredients of EVERYTHING. Always always always double check.” I couldn’t agree more. It’s annoying to always have to check the ingredients, but it’ll save you a lot of symptoms. If you’re not sure if something contains gluten or has been cross- contaminated: just don’t eat it.
I’ve practised an ‘elevator pitch’ to tell to new people I meet (when I think it’s necessary to do so).
Be prepared for the question: ‘But what kinds of food can you still eat then?’ I was sort of prepared for this question, because I didn’t eat meat and poultry for 20 years and I got asked that question all the time. I do eat biological meat now, because vegetarian burgers etc almost all contain wheat.
Thankfully most people I know, are very understanding and willing to learn. It took me a months to feel better and now after two years most of the symptoms are gone. I never cheat or feel the need to cheat, because I do feel so much better now and I feel not so great when I accidentally get glutened.
My comments are directed to parents of small children with Celiac Disease.
Try to avoid the regular grocery store with your smaller child, particularly in the beginning. It just shows them hundreds of things they can’t have and it’s so hard for them to understand. My biggest moment of grief with my son was at the grocery store when he was 5 and I looked down a couple of minutes after telling we couldn’t buy one thing or another, and there were huge crocodile tears silently rolling down his cheeks. I took him to the pharmacy area where there was a bench and he sat on my lap and we both cried for about 15 minutes. The grocery store can be an extremely difficult outing for them…
Research implementing a 504 plan at your child’s school (under the American with Disabilities Act noted above). Some public schools (luckily the one we go to) do an excellent job at keeping your child safe in the school environment while others do not. A 504 plan creates a document that requires a certain level of responsibility on the school’s part to ensure your child’s safety. The school is, BY LAW, required to follow the plan.
If your kid is small enough to still take a bath (and be spitting the gross bath water at the bathroom wall!) be careful what shampoos and soaps you use. This was one of those hidden issues with us in the beginning…
Don’t let your child go to someone’s house to play without bringing their food with strict instructions for the child to eat nothing else. My child was given sliced bananas w/peanut butter at a friend’s house because she “knew that stuff was gluten-free.” Unfortunately it was the same peanut butter jar she used on her child’s regular sandwich the day before…
Be prepared for a different child than you had before. My son was so profoundly altered after being GF for 9 months that we couldn’t believe it. In addition to the physical changes (he grew 6 inches and put on 15 lbs during those 9 months), his personality changed completely. The somewhat whiny, unsociable 5 year-old I had known since birth became a vivacious, happy small being that never stopped moving. The change can be dramatic.
Some of the best advice I received from another mom of a child with Celiac was “always make theirs look good”. Meaning, when you have to substitute a treat for a child at a birthday party, school event or sports event, try to bring something that looks REALLY good. (i.e. put M&Ms on top of that GF cupcake…) It goes a long way when everyone wants what your kid has instead of your child feeling like they are getting some crappy substitute. My son has never come home crying from a birthday party because he couldn’t have the cake. Now I’m all for the not-processed, whole, better-for-you-stuff, and we do that at home every day. But there are times when you just want your kid to not feel different. They will have a lifetime of feeling different and separate so those few times you have a chance to make them feel normal, take advantage of them.
And lastly, don’t beat yourself up if they accidentally get glutened. It happens even when you think you’ve got it all under control. They are going to be ok and so are you. 🙂
Grocery stores still affect me – and I’m an adult. Good advice for those with kids. I would add – if you do have to go into a store – shop the perimeter – it’s usually the whole foods.
And at the risk of sounding like I am trying to get on Gluten Dude’s good side… The first thing I tell anyone newly diagnosed is GO TO THE GLUTEN DUDE website and meet your people!! I have told GD this but this website was a huge blessing and source of strength to me. The people here are amazing and made my life so much better – that really should be near the top of any article pulled up on the internet about a Celiac Manual –
I have a good side? 😉
Brilliant Idea!!! My input –
When I discovered that I have celiac disease I cried for about 2 days straight thinking about how drastically my life was going to change food wise. Then I discovered what celiac disease actually is & I cried for another 5 days straight. Then I was done mourning my old life and ready to conquer this.
It’s just like any other dietary restriction in the way of it being overwhelming – AT FIRST. It’s an adjustment period of really learning about what is safe to eat and incorporating it into your meals. I had no idea what I was doing at first, but within a month I got the hang of it and it was no longer overwhelming. Now, just a few years into it I’m quite relieved to have a clean diet. I’ve really dedicated my life to researching health and how to get mine back. I had to learn everything on my own, by doing my own research and by reaching out to the celiac community. No one else was going to help guide me through this partially because many people don’t care about celiac disease unless they have it and partially due to the extreme ignorance society has about celiac disease. I learned the hard way not to eat out any longer. I realize some people still chance it, but it’s not a risk I’m willing to take. I tried in the beginning and it always turned out bad, no matter how cautious I was or how much I had been reassured, even at a restaurant where I was ” guaranteed ” it was 100% gluten free, which turned out to be the worst Thanksgiving of my life. The fact is, a celiac patient really has to take matters into their own hands and to not trust anyone, even your own spouse, family etc until they learn everything there is to know. I discovered this when my husband threw a gluten free donut into our oven for me without my supervision. He didn’t lay down any tin foil and this oven had been baking gluten foods for a few yrs until I had just been diagnosed days prior. Needless to say when I became extremely sick I realize he had turned my gluten free donut into a gluten donut.
One of the toughest learning experiences for me was discovering who my true friends aren’t. Once everyone was told that I had celiac disease I looked around and I hardly had any friends left. The ones who I have kept in my life I keep at quite a distance due to their ignorance and offensive statements. Mind you, most of these ” friends ” work in the medical field as doctors and nurses and claim to be educated on celiac disease, while they ask me to have ” just a small bite ” of gluten.
As for the most important thing I learned, it’s that I’m in charge of my health. I soon realized that I couldn’t just go gluten free and expect things to be okay. I had to learn a lot, like that studies show that the body often identifies soy the same way it identifies gluten and can trigger an auto-immune attack. I don’t seem to react to soy and some of us don’t, but I still stay away from it. I learned to listen to my body. I also researched good digestive health and started living my life accordingly, such as drinking kombucha every morning, using probiotics, digestive enzymes, foods, spices, herbal teas and essential oils that are good for our digestive system and I avoid what is harmful to us. It was a lot to learn and I’m still learning, but it is worth it.
Reaching out to the celiac community is a smart step, but there are some people who have celiac disease who don’t understand the damage it causes to cheat and don’t care because they’re one of the many celiac patients who don’t experience symptoms. If you have celiac disease, you are in the same boat as us all. There is no such thing as a little bit of celiac disease or mild celiac disease. Symptoms pinpoint nothing! So, if you feel like cheating, don’t, the damage it causes your body can cause cancer and all kinds of problem and there is no gluten hamburger that is worth that. Every single thing that you are used to having you can substitute for and cure your craving. There’s gluten free pizza, hamburgers, beer, you name it. It’s also good to keep in mind that just because something is labelled gluten free doesn’t mean it is or that it’s good for you. The FDA standards of what is acceptable gluten is on all of the gluten free shelves, so how much gluten is that if you are consuming a bunch of these processed gluten free products filled with soy, sugar, corn and possibly made in a shared facility? It’s important to let your body heal, so try kombucha, gluten free herbal teas, like peppermint teas, homemade broths and soups and get to know your vegetables and good, clean meats!
Don’t take things at face value, no one cares about you, your health and safety the way that you do and even if you do have people in your life who love you, don’t expect for them to understand and learn overnight. None of us can do that. We all make mistakes, especially in the beginning. As time goes on fewer mistakes will be made and the realization will come that this way of life is cleaner, healthier and it really isn’t the big inconvenience that it was at first. Each day it gets easier, you just have to adapt and learn how to eat healthy gluten free foods, it’s really not that hard once you get going! And never trust anyone with your food unless they are thoroughly educated on gluten and celiac disease. And it’s not just food, you will need to read ingredients on everything from shampoo to toothpaste. It’s safer to not come into contact with gluten at all and if you do touch it, wash your hands thoroughly and if you accidentally ingest gluten, try to help it pass through you by drinking a lot of water, a little bit of pyslium husk and adding a bit of aloe vera juice or gel into your water will help you to heal. Your support system needs to know all they can know to help you and most importantly, you need to learn all you can about the foods you’re eating and making sure they’re good for you!
What I wish I had known:
There’s a withdrawal. And it sucks. I’m pretty sure it feels just like going off sugar or caffeine. I felt restless, confused, I ate twice as much as usual for a week and never felt satisfied. Still, cold turkey is the way to go. “Easing” into the gluten-free lifestyle is only delaying the time you will feel better.
You will see people with gluten intolerance everywhere. And by that I don’t mean those with diagnosed CD. I mean friends, family, coworkers and acquaintances who suffer from the same health issues, people who are sick but think that it’ss normal for their system to be out of whack. You’ll want to help by letting them know how gluten affects seemingly unrelated things like menstrual cycle, chronic inflammatory pain, eczema, acne and extreme carb cravings. And chances are, they’ll be brushing off your attempt to help out. Don’t take it personally. You’re not responsible for other people’s health.
If I had a dollar for every time I’ve heard “Oh my God, you’re so good! i could never stop eating bread! Glad I don’t have it.” Well guess what? If you’re addicted to bread, there’s a chance that you “have it”. I was addicted to bread and my life fell apart the day I realized I’d never ever have my mom’s fresh spelt bread again. Not for the next 150 years (hey without gluten I should live longer right?) I’m not particularly good, brave or anything else to give up one of the yummiest foods on Earth. I’m just a girl who’s not looking forward to dying of cancer or something at the ripe old age of 40.
It will strike you how misinformed people around you are. Don’t try explaining gluten to the lady at the food court who thinks you’re a vegetarian and suggests the tofu lo mein. If they’ve never heard the word “gluten” and think it’s a type of fish, run for your life. People will often refer it to an “allergy” and some will even think it’s fine to take a chance on contamination because you can just pop a Benadryl if you react.
You’ll hear and read contradicting information everywhere. Just have faith that you know what’s best for your body. Because someone else had these cookies with no trouble doesn’t mean you can.
Everything else I have to say has already been said.
Good luck with this book!
Some things I wish I had known when I was first diagnosed:
* For some reason, I assumed that upon my diagnosis my close friends and family would be alarmed by my disease and be interested in learning about/understanding it. Turns out, not one of them even bothered to google what celiac disease was, despite the fact that internet access it, quite literally, at their fingertips. At first, it really bothered me that no one seemed to care about my health and well-being. Eventually I decided to make them care instead of waiting for them to care. I found a brief celiac fact sheet (detailing what the disease was, the seriousness of it, as well as the risks of cross-contamination) online and sent it to all of them. It was a quick but informative read, and they finally understood what celiac was and the risks associated with it.
TLDR; If they don’t take initiative to learn about your disease, be proactive and inform them. It’s better than sitting alone at your own pity party.
* One of the most helpful resources upon my diagnosis was a nutritionist in my area who has been dealing with celiac for years. Because of this, I was able to get better and more honest information and answers than simple textbook or pamphlet info. My advice is to seek out other people dealing with celiac and just talk about it. They will be much more understanding and helpful than someone who has never gone through it.
* Restaurants don’t always take you seriously when you simply say “I can’t eat gluten”, because they think it’s probably a diet, not an immunity. They probably don’t know what celiac is either. (If so many doctors don’t, why would waitors?). Advice given to me early after my diagnosis is to tell them you have a GLUTEN ALLERGY. It may be somewhat of a white lie, but restaurants could get in serious trouble if they don’t take the word ALLERGY seriously, so (in my experience) you will be more likely to get the clean gloves, utensils, surfaces, etc. you deserve. 🙂
I wish I had known that:
1. No amount of pleading would convince first degree relatives, even one who says he reacts to gluten, to be tested for celiac. When you persist, that relative will tell you that you sound like a Cross-Fit advocate. That no one wants to hear about your disease. That is true, but in restaurants, I still quiz the staff and manager anyway. It is my body and I don’t like being sick.
2. My reactions to gluten would get worse after I quit eating gluten. Makes sense now, but at the time, I had no idea that after four months gluten free, an accidental glutening would cause my body to scream POISON, POISON and expel the poison in any way possible. The stomach pain was stunningly bad. I was NOT impressed.
3. I would cook more than I ever wanted to cook. That eating out still freaks me out 2 years later.
4. People do not invite you to their houses anymore. They don’t know what to cook for you and don’t realize you are perfectly happy to bring your own food. There are wonderful exceptions to this “rule.”
5. Feeding my cats food with gluten in it could cause a reaction in me. They now get expensive food that they don’t like all that much, but they are learning to eat gluten free also.
6. How big a trauma cross-contamination would be. I don’t know how to fix it, but I don’t think a lot of people know that you have to basically refurnish your kitchen: Pampered Chef out; scratched plastic out; scratched teflon out; mixers out; toasters out. AARRGGHH!
I think that will do for now.
Learn how to interrogate companies via phone and email. Before you try something new like another brand of olive oil, write an email and ask if the oil is GF. But keep going, and ask about the factory and equipment and packaging. Do they test each batch? Does anything else get made on the same equipment? Beyond the answer you get, listen for how on the ball this company is. And by listening, I mean be quiet and listen. And then say, Thank You.
But if you get zapped, try some Aleve for inflammation.
Being diagnosed later in life has been difficult. It’s tough to teach an old dog new tricks! So definitely give yourself permission to grieve – your life is going to change. FOR THE BETTER but still it is going to change.
Next, congratulate yourself. You now have the power to heal yourself. Pretty heady stuff!
EDUCATE YOURSELF! Read books and go online. The information is out there – you just have to find it.
Try to eat natural foods whenever possible. They’re so much healthier. If you have to buy prepackaged – Read those labels!!
Shop for gluten-free foods in the same aisles as the other foods. You’ll be amazed at how many foods are naturally gluten-free. You don’t always have to pay that higher price tag.
Always have safe food with you. It’s tough enough not to be tempted to cheat – so don’t use the excuse that there’s nothing to eat. I leave a bag of trail mix (that I put together myself – nuts, seeds, raisins & a few M&M’s) in the car as an emergency kit.
Give your taste buds time to adapt. Gluten-free foods are an “acquired” taste. It takes a while to get used to the texture of the breads and the flavor of gluten-free beer. But you will!
Still go out to eat! Don’t deprive yourself – just plan ahead. Call the restaurant and speak to the kitchen manager. This was difficult for me. I felt like I was being an inconvenience. You’ll be surprised how willing they are to accommodate. Once you find a couple of places you can trust, you can go anytime.
Don’t focus on the negative comments from friends and family. You’ve been given a new lease on life – enjoy it!
Awesome folks…keep em coming.
Yes, all these comments are wonderful, and I really can’t add more to any one specific topic because many already have. I would reiterate topics of what happens after you have been diagnosed…I have been in a fog about how to “stop eating gluten.” It’s an actual morning period, crying, and panic attacks at summer picnics, and those who mean well, but don’t understand because you still don’t understand. There is plenty of information out there, I would like to see some meet up places in my neighborhood, cooking classes offered, just so I don’t feel like I am on the computer 50% of the day researching, and the other 50% in the kitchen cooking;)
I would also like to see advice and services shared for military families with Celiac diagnosed dependents. There are plenty of classes and help for Diabetes patients who require nutritional care, but not for Celiac patients, as far as “Tricare Insurance” goes. Tricare DOES NOT recognize Celiac for Nutritional care, only if you are a Diabetic, or are in inpatient care. Wait…they diagnosed me, but yet they just told me to stop eating gluten? Let’s work to change this:)
Finally since I am in the Pharmaceutial field, I would like to see more information coming from the companies as to what’s in the prescriptions being handed out. I really do think this will help!
FDA is deep into policy considerations on how to deal with gluten in drug products. It is a matter of public record.
I sure wish Dude would share what he’s up to.
…to my a** in work lately 😉
Do you have any links you can send me about this? Thanks.
Start here,…
el Hefe on August 7, 2014 at 12:52 pm said:
Reply ↓
FDA is working on it. Two US senators are asking questions. And in September, decisions will be made on whether to proceed to deliver to FDA a big legal slap in the mouth for their delay.
http://www.gpo.gov/fdsys/pkg/FR-2011-12-21/html/2011-32551.htm
And now for a summer celiac cooler; one shot Tito’s, squeeze of lemon, Equal sweetener to taste, ice, water.
I’m on it (both the link and the cocktail). Cheers.
Way ahead of you! 😉
Hi Janet,
My husband is active duty AF and Tricare has covered all my appts with my nutritionist (I was diagnosed with CD last summer) as well as all my supplements to treat my low iron, vit D and calcium. Just curious what you are referring to when you say Tricare doesn’t “recognize Celiac for Nutritional care”?
Military dependent here, too. My nutritionist appointments are covered, as well. Ditto for the prescribed vitamins (iron & D3 deficiencies). I’ve never had a problem with Tricare.
Hello Deb and Kathy,
Thanks for sharing. Vitamins, and visits to the Gastro specialist were covered, however the referral came back denied to see a nutritionist; it was explained to me that this is a “non-covered” entity for Tricare Prime. They said I could appeal this after receiving the denial letter, which I am in the process of hunting down, because I never received one. (I have Tricare Prime.)
I paid out of pocket to see a nutritionist-and it was not good. She gave me protein bars with gluten in them, after saying she works with Celiac people. I will continue to look into this as you say you got it covered, I don’t know why I am being told no:/
P.S.-would like to know more about how you got this service covered, I am in the West region, so how about sending me a requet on FB @ Janet Merrigan Warren, and we talk privately about it; that would be great, thanks!
If you have the facilities to cook for yourself, start learning how to do it gluten free. Buy some new equipment where there’s any risk of contamination from the old stuff.
I’ve long cooked dried pasta and made sauces from mostly fresh ingredients. There are a lot of gluten free pastas available. Here I was able to just scour out the stainless steel pot I boiled pasta in and get a new stainless (you could buy nonstick if you prefer) pan for the sauces. Most of the things I’d been making for years I can still do.
For Chinese food I bought a new wok and some gluten free soy sauce. Again, back to usual for most of the Chinese stuff.
I got a new pizza stone, and started the long slog to re-learn how to make a decent pizza crust. There are dozens of people who are trying to do this who have reported their results online, so if you’re broken up about not being able to have pizza, look around. There are quite a few different flours available and several binding agents (that replace the gluten) that can be used, so the combinations are seemingly endless. I’m finding it a lot of fun to experiment.
As you get more confident about cooking gluten free, open yourself to new things. I’ve had fun trying cauliflower crust pizza (odd, but really pretty good) and obscure GF flours. Ever heard of timothy flour? I hadn’t either before I had to go gluten free.
Spend some time (but beware, this can be a big time suck) reading the many, many GF blogs. You won’t feel quite so alone, and there are lots and lots of good ideas to be found.
I’ve been lurking for a while, but wow. This community rocks.
My advice is to acquaint yourself with the cross reactives list. What a shock THAT was. I stumbled across a mention of it a few months after going GF and nearly cried. I was feeling so much better by that point (hey, I didn’t walk like I was geriatric while still in my thirties!) but still had lingering symptoms that I couldn’t figure out and didn’t seem to be resolving at all. Turns out coffee was the major offender, followed by dairy. Once I cut those and gave myself some more healing time, things finally settled.
I still haven’t heard word one about cross reactives from the GI.
Glad you came out from the shadows Katie. This community is seriously tops.
Thanks!
And I wanted to add that coming out of gluten-related depression can be like waking up from a dream. There can be a huge amount of guilt associated with that waking, especially if you had years of depression behind you. It turned my memory into Swiss cheese. I can’t remember some of my kids when they were younger. I can’t remember some of the rooms in places we lived, or the faces of friends from that time. And the whole exhaustion thing? GD, you put it well when you said there’s tired, and then there’s gluten tired. There are whole years that just blur together. I thought I must be the laziest housewife in the US. I will never be Martha Stewart, but I know now that it wasn’t laziness. It was a wonderful, guilt-releasing realization. I’ll never get those years back, but at least now I have a future. One I can remember.
You haven’t heard ” one word” from an actual medical doctor about ” cross reactives” because there is no scientific evidence of gluten cross – reactive foods.
Whatever anyone thinks about “cross-reactives,” the truth is that those with Celiac have leaky gut issues and, because of that, can be prone to food allergies in addition to having gluten problems. I’m allergic to several foods in addition to having Celiac. Fortunately, I “only” itch violently and my throat swells, but I haven’t had full anaphylaxis. But before the food allergies were figured out, I was a lot more sick and uncomfortable. (Of course, I had one allergist tell me I was crazy, and another tell me that my symptoms could be caused by so many things, it wasn’t worth trying to figure out. But if I couldn’t breathe, I should go to the ER. I’m grateful I finally had a sane MD who suggested an elimination diet. Sane MDs seem to be a rarity.)
Allergies are not the same thing as celiac or this ” cross- reactive” stuff. Whether your allergies have anything to do with ” leaky gut” I have no idea. Not sure if there is any real research on that. People who know more than I about food allergies tell me that the best way to test for them is by elimination diets and observation.
The MD who suggested doing the elimination diet told me that my food allergies were highly likely to have been the result of gut permeability issues that were the result of having had undiagnosed Celiac for many years.
This is getting a bit off topic, but I think the whole intestinal permeability issue and its relationship to illness needs more serious research, which is actually starting to be done. There has been at least one peer-reviewed study looking into the theory that “leaky gut” even might play a role in the development of Parkinson’s Disease. Given that those of us with Celiac likely have had, at least pre-diagnosis, serious issues with gut inflammation and intestinal permeability, I think these kinds of research questions lead to other interesting questions that pertain specifically to us–how might our messed-up digestive tracts have paved the way for other health complications? Maybe someday there will be serious studies about this too.
I think what I really was trying to say in my first reply is that it’s complicated. Maybe it’s possible that those things aren’t actually “cross reacting,” but, rather, that those particular foods, in some people, continue to irritate the digestive tract in ways that make healing more difficult. And, yes, it is true. This isn’t the same thing as food allergy.
It may be complete bunk. I can only give my own personal experience, which was that coffee brought on many of the same symptoms as gluten. In fact, I had symptoms from coffee years before I noticed anything to do with gluten. It may be that it’s a separate intolerance. All that I can say is that without coming across the cross-reactive list, I would more than likely still be sick and suffering from DH. There isn’t any scientific data to back it up, just anecdotal evidence, but how much of this disease is backed up by nothing BUT anecdotal evidence? In many cases, science simply hasn’t caught up yet. How many of us still have doctors dismiss all of this as “in our heads” for lack of enough evidence to satisfy them? Be careful of shrugging off some of these things as useless. If all it does is to help put one more person on the right track toward healing, then isn’t that a good thing?
Be careful with coffee. Many are roasted with barley for flavor. In fact, barley is a big flavoring issue for us, as it is often part of the flavoring additives listed as “natural flavors” on labels. And I totally agree that science probably doesn’t know enough about this disease to claim any absolutes except that we can’t eat gluten. For some, 10 ppm is too much, so lots to deal with with this disease and there just isn’t a one size fits all solution.
Well, damn. I had not thought about coffee as a possible source of gluten. It’s been two years, and I’ve been really good (got my numbers down almost to the normal range in 6 months) but I’m still waiting for the fog to lift, so I drink a lot of coffee with soy milk in it. Maybe it’s time to experiment some more …
Don’t swear off your coffee! Just call manufacturers to make sure they don’t roast with barley and there are no chances of cross contamination along the way 🙂
ALWAYS WRITE THINGS DOWN. I FORGET EVERYTHIN WITHOUT NOTES AND TO DO LISTS. Always carry food too and trust no-one.
A lot of information out there is all about food. Some doctors say you can only have a reaction from ingesting gluten, but I react when I come in contact with it. Watch out for cosmetics, lotions, and hair products. They put wheat in everything! If you color your hair, check with your stylist to make sure it’s not in the color. It is a form of protein used in hair products (I am a hair stylist). I have had awful rashes just from a lotion. Check all ingredients!!!
make sure the kids around you have gluten free snacks especially babies because they like to put their hands in your mitih, food, or drink after you…. KIDS ARE LOADED WITH GLUTEN SO BEWARE. Also educate children that dont have it so that they are cautious and respectful of the disease.
PLAY-DOH IS GLUTEN
Dating will be hard. Only the real of real will be able to tolerate and love a celiac however that person wull be amazing and will be worth it later. In the meantime till you fibd that right person you will meet some people that will not want to date because of the difficulty of the disease.
and for chapter 2 of this wonderful, wonderful (so far) book, can we have food suggestions that are fabulous. What do you recommend that we eat, your go-to, something that never makes you sick and tastes great. 🙂
Hopefully it’s fine to extend advice to those who have not yet been diagnosed and are considering testing. Don’t go gluten-free before you get tested, and stay on gluten while you’re going through the testing process. Do some research on celiac testing so you know what to expect. Go to a gastroenterologist who at least is very knowledgeable about celiac disease and other gluten-related disorders if he doesn’t specialize in them. Ask for copies of your test results and ask questions about anything that looks unusual to you or at least go home and do some research about what’s listed on your results and then ask questions if you have them. If you think there’s anything there that a doctor should explore further and if your doctor doesn’t agree, go see another for a second opinion. A diagnosis can be hard to come by in some circumstances, and you owe it to yourself to do all you can to rule it out with as much certainty as possible (or rule it in if you firmly believe you have the disease). Of course, if you test negative for celiac disease in spite of taking all the preceding steps, eliminate gluten anyway to see if it makes a difference. You can still have problems with gluten even if you don’t have celiac disease.
I mourned my old life for the whole month when I first heard they were testing me for it, reading everything I could get my hands on. I had no idea how complex things were going to be, or how my family would think it’s no big deal. No support, not taking me seriously for cross contamination, making jokes….so hard, and hurtful. But the big thing was I had no idea about was the detox I would go through. I believe I had the disease for 30+ years so there was a ton of damage. So I don’t know if that has to do with it. But I went through months of exhaustion, brain fog, concentration issues….essentially your worse nightmare when you’re trying to work full time for new bosses you’re trying to impress. My iron levels were normal and endocrinologist couldn’t find anything else to indicate why I felt that way. But my GI believes only GI issues exist with CD, so wasn’t willing to assist me in any way, shape or form. Finding a doc who understands CD right from the get go is ESSENTIAL not only to answer your nagging health problems, but to forewarn you of what’s to come. To even answer what should be a simple question on how long I probably had it. (He told me he doesn’t know. Most everyone else had a doc who had a good guess.) Trust me when I say it’s worth going to NY Chicago etc. and seeing a CD specialist there. I’m going in a couple of weeks and cannot wait to hear more about my disease my other doc did not know.
Here is what I would say:
You will find there are a lot of people spreading rumors, selling dubious products and tests, and just plain nonsensical ” “information” out there. You need to have a good dose of common sense, a basic understanding of anatomy, a basic understanding of cooking, and the ability to look for reliable scientific or medical information. Don’t believe someone with a slick website calling themself a ” gluten free XYZ” or a ” doctor of gluten” or some other made up credential. Go with info from sites like national Celiac associations or medical centers specializing in Celiac.
I agree with Lima’s practical advice. I would add that we should include “GLUTEN DUDE” and his blog among Lima’s recommended go-to resources. This “how-to guide that covers all of the emotional, social and physical aspects of living with celiac disease” provides “something so that those diagnosed with celiac disease in the future have a go-to resource on how to cope best with their new life” and we should tell as many people as possible that this resource is available here.
The main conclusion I reached by reading all of the unifying and educational comments above from GDude’s experienced community is that GDude has created a sense of belonging for us after gluten alienated many of us from our former communities. We realize together we are experiencing the same symptoms, challenges, solutions and triumphs. “CD: The Manual” will help us assist each other and newcomers with becoming more than conquerors over this debilitating, confusing and sometimes brutal gluten enemy.
Gluten Dude, his blog and this community has already been my go-to resource for many reasons including I know I am not alone in my battle and now with The Manual, Gluten Dude as that go-to resource is even better!
Plus now that “The Boss” (El Hefe) has joined our growing community, there is “No Surrender”, “Restless Nights” or “Sad Eyes” for us or “Waiting on a Sunny Day” with “High Hopes” that we’ll be “Tougher than the Rest” as we enter our “Glory Days” because we are “Born in the USA” and “Born to Run” down “Thunder Road” near “The River” among the “Streets of Philadelphia” in the “Land of Hope & Dreams.” “If I Should Fall Behind” on our way to the “Secret Garden” where no gluten is grown, I’m “Going Down” with “Fire” in my “Hungry Heart” free of gluten following El Hefe and the Gluten Dude with my own copy of “Celiac Disease: The Manual”!
Dude, sorry, when I saw “el Hefe” commented today, I couldn’t stop myself from hoping maybe Bruce had finally joined our campaign against gluten. We don’t want “el Hefe” to think only Tito’s has a fan club on this blog…
No matter how long it has been since you went G-free, no matter how long it had bern since you gave up so many wheat-filled goodies, when you finally come across the GF equivalent, you will cry. Even if it’s nasty, you will probably eat it. At least just once.
I don’t know what you people are eating but at no time did I ever cry over a gf equivalent product. What I did was learn to make them myself, most of the time, and even the gluten eaters like the result. There are also many great products out there these days and it was not like that almost a decade ago when I was diagnosed.
Sure there is crap gf food but there is just as much crap wheat food too. I also found that after following the diet for a bit and when healing occurred, I did not, and still do not, crave carbs nearly as much as I used to. I can go without bread, cake and all the rest and not have it be a problem because you feel so much better not eating them that much.
Yes to (almost) all of the above (what a terrific post – and a great e-mail!). At the risk of sounding zen-like, I would add the theme: everything changes. Your life as you knew it will change and even after diagnosis it will continue to change.Once I had a diagnosis I thought: well, that’s it. I had not expected (in my fourth year, post-diagnosis) to still be dealing with change: the way my body reacts to accidental glutening, the fatigue level, the lack of control (this is not a good disease for a perfectionist!). Change for the worse (I am more sensitive to gluten than I was pre-diagnosis), change for the better (I have abandoned gluten-free replacement foods).
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You will need to be very careful and very vigilant when it comes to cross-contamination. It goes without saying that you should never consume foods and drinks with gluten ingredients, but at times you may be tempted to reach for that gluten-free food item even when you’re not sure if it’s been contaminated. Contamination can come from just about anywhere, from hands that have gluten on them to even the dishes/utensils used to serve and prepare the food. Dishes and utensils can cause you problems if they were washed with a gluten-contaminated dish rag in gluten-contaminated water. The dishwasher is the best way (in my experience) to clean gluten from dishes. Pet food can cause problems as well. I had to switch my cat to gluten-free food and treats because I was being affected by them. I had to take my dental appliance to the orthodontist to be thoroughly cleaned. When cleaning out your kitchen, one of the first things you should do is scrub out the sink basins thoroughly. I used Brillo pads for this. Next would be to wipe down and clean out the utensil drawer, washing or replacing the container used to keep the utensils. I would never store non-food items, like scissors, tape dispensers, etc. with utensils. Think about everyday things you do that may cause direct or indirect contact with your mouth and handle anything that may cause gluten exposure. To me, dealing with gluten contamination was the hardest part about going gluten-free. It’s very hard, and you’ll have cycles of feeling better and then feeling bad again because you still have sources to deal with, but it will get better and the cycling will end as you get rid of all the sources of gluten exposure.
A lot of women who have celiacs disease could also have poly cystic ovarian sysyndrome. Please get the ultrasound testing if you feel like you might. Its a nightmare also to have. Feels just like menopause however there is a cure!!! The doctors will tell there is not. Last year I cured myself of pcos by drinking moringa powder everyday. In thirty days my pcos went away. It was intense, i felt cysts popping(i had thousands) hair grew back on my head and stopped growing on my face. Im not as tired anymore unless i get hit witha ggluten bomb. Its been major life changing and it helps now to maintain nutrients your body needs that you can’t always get. O its called the moringa oleifra. Its a tree that grows in other parts of the world, it has 90 vitamins 46 antioxidants almost all of your essential amino acids. Its super amaazing and they dry it to powder form and you take 1tlbs a day!! Thats it!!! You tube has a documentary on it you should watch…. THE DISCOVERY CHANNEL THE MORINGA OLEIFRA. it explains everything. Then buy on Amazon. $17 for 1lb bag lasts about 3 months. Please trust and believe me it is real and truly amazing
Without being a fear monger, I would say that coming to the realization that I was diagnosed too late to enable my body to completely heal from all the damage done was very difficult for me. Even with great support, the disease can get you down if you let it. But you just can’t let it keep you down. I am now actually grateful for it because it forced me to eat healthy and take care of myself. That was something I hadn’t done much of in my life. So I would say that while it isn’t a great thing to have this disease, having it will open your eyes as to what really is and isn’t good for you, as well as teach you to be your own advocate and how to take care of you. That is something so many people cannot do. Celiac forces you to do it. I have become more spiritual since diagnosis because stress can really have a bad effect on the human body, even more on a Celiac body. So it is a life changer, that’s for sure, but sometimes that is exactly what we needed in our life. We can look at it as a kick in the butt to start taking care of ourselves emotionally, spiritually, and physically. And in time, it gets easier to accept, and sometimes even be grateful for, that new lifestyle.
I think a lot of people have mentioned the emotional part of accepting and dealing with a disease, but I think hard core facts would have helped me the most when I was diagnosed. Like what other tests you should run to check for vitamin deficiencies, your thyroid, your liver etc. to make sure you don’t have a second autoimmune disorder. Take vitamins. You may have secondary symptoms related to vitamin deficiencies. Realize gluten free is the tip of ice berg, you may discover other food sensitivities that can have a huge impact on your health such as night shades. Try a food family rotation to see what affects you. You become dairy intolerant. It may take 6 months to a year or more to heal your intestines. You may have bacterial overgrowth in your intestines. When you get glutened it can take 4 to 6 weeks for your stomach to generate new villi. Cross contamination….the list goes on with potential topics. At this point I know more than my doctor does about celiac disease.
I have never been officially diagnosed with Celiac Disease but I have a sever wheat allergy. I always carry a Epi pen since wheat cause hives, sever low blood pressure and swelling. I also get sever cramps, nausea and stomach upset if I eat gluten. For this reason I have to stay away from wheat and gluten.
I did not read all of the responses posted but one point I would like to make is always be prepared when you are away from home. You never know when gluten free food will not be available and you are hungry and may be tempted to cheat. I always carry almonds, raisins and if I can find it a snack bar. So many times work or someone will say they will provide lunch and they do not understand that we cannot just remove those croutons from the salad or take the meat out of the sandwich. I have been gluten free for over 10 years and there have been times when I just wanted to cry because I was hungry and there was nothing to eat.
So be prepared, have food that you know is safe and enjoy life.
I would like the manual/book to have a section for family and friends as well. Explaining what foods we can eat and about cross contamination. So many family members and friends have anguished over having me for dinner even when I assure them not to worry, that I will bring a GF dish for everyone to share. One friend is so over anxious about it I flat out refuse her invites b/c she can’t handle having me bring a dish. She’ll say, “but I am inviting you over, that doesn’t make sense.” I can’t win with her.
I always try to explain that there are a lot of whole foods I can eat…..but also some one said,”trust no one.” That is true too. This section could explain why we need to bring our own food and/or supervise the preparation.
Also some comforting words for significant others who get pissed off about the diagnosis. or not so comforting, “you selfish son of a bitch get over yourself.”
Great post GD, great idea!
Maybe some tips for living in a shared household? There are some great tips up above… Sharpie pen, labels are a must for shared households.
Or dating tips? I start feeling like Meg Ryan’s character when I am “this, but not this, that, but not that”.
I know, for me, I have to watch everything. I do buy some prepared g-f things, though. There can be gluten in everything, it is maddening.
We have a family funeral event coming up. I emailed the inn, then called them, asked them to put a note on the reservation. I am still nervous about this, so I am bringing snacks. (dried fruit, chocolate milk, maybe some cheese)
I don’t buy flours that are next to the wheat flours. Or from the bulk bins. (I saw a wheat flour bag burst once, in the grocery store, and the flour residue was everywhere).
A grain mill for your kitchenaid can be a great investment. Or a fridge/freezer just for g-f grains. (Moths! AUGH!)
Call companies. Usually there is a phone number on the box. And give them feedback (positive OR negative) on FB or Twitter. I had called a company, asking if their product (hemp hearts) was g-f, and got a great customer service person who explained why it wasn’t labeled (not grown in isolated [not the word I’m looking for] fields). But she was nice and upfront about it. So I posted about this great interaction on FB. Because it was nice not to get the runaround.
Join a CSA, if you can. It makes such a difference, getting the local, fresh foods.
Get ideas from different places, raw foods blogs, etc. Just remember, some of the stuff they use is not g-f.
The religion thing is tricky. I am a [very] lapsed Catholic. Stopped taking communion because of the risk of glutening. Even the “gluten-free” Catholic wafer has a tiny bit of gluten in it, because apparently, according to theology, they can only bless it if it contains wheat. Otherwise it is not the Body Of Christ.
And man, Catholics love gluten too… everything has gluten in it at the social events.
If you are at an event, try to be first up to the appetizers/buffet. If there is anything that you know is “safe” (something you have brought, for example, or you know the person who has brought it, and trust them) take your helping first, then do NOT go back.
Here are my top 3:
1. You’ll learn how to become a good advocate for yourself. It’s hard – it’s not something that comes naturally to many of us! But it’ll get easier, and know that looking out for your health isn’t being unreasonable, overly demanding, or “too needy.”
2. You may have to push back against well-meaning people who love you, but who don’t get it at first. My mother really wishes that I didn’t have to deal with this, and that sometimes comes out as her pushing back against the number of restrictions I have – “Are you *sure* that you can’t try that?” “Is the possibility of a stray crumb or two *that* big of a deal?” I’ll be honest – it can be exhausting. But people who truly love you will eventually come around. (And if they don’t love you enough to work on this, that’s their choice, and it’s not your job to placate them.)
3. Socializing will be trickier for a while, but don’t let your world shrink down out of fear. Sharing food is a central part of a LOT of our social moments, and it’s going to take a while for you, your family and friends to figure out a new way of navigating these times. You’ll find new systems that work for you: eating ahead sometimes, bringing some food to share, finding those family members who’ll step up and make sure they bring safe options.
This is gonna be the best book EVER! 😉
We did a similar co-authored handbook at peeragogy.org
We’d be happy to consult and co-author, as one of us is very autoimmune.
S
Fabulous idea!
From a parent’s perspective for children with Celiac:
1. When you child first goes gluten free you may not know what being glutened looks like. I encourage a diary tracking behavior and any new foods you try or places you eat. For my child, being cross contaminated initially means anxiety, outbursts, and poor behavior. It took me months to figure that out. Intestinal issues only show up in more severe cases of contamination.
Seriously consider making your whole house gluten free. It is much less stressful to NOT worry about cross contamination in your own home than to worry about giving up your gluten containing foods.
2. Put an American with Disabilities Act Section 504 plan in place at the school. Be prepared that the staff, nurse, school psychologists, etc. may not fully understand the disease and will need to be educated. School personnel may believe that if your child is now gluten free that the plan is unnecessary. The law will protect your child in case of accidental ingestion of gluten and a plan can be put in place for possible future need. BE VERY CLEAR that you can request a plan for an “in-case” consideration. Also consider if your child, because of his/her autoimmune disease(s), gets ill easily causing excessive school absences. As part of the plan you may wish to include an exemption for absences as a result of the disease. States/schools will often have rules in place regarding the number of absences a student can have before being considered truant or a candidate for retention. A Section 504 plan that specifically addresses absences due to illnesses will protect your child in these cases. You may also wish to address in this plan how school assignments are treated during absences due to illness.
The Section 504 plan should also have details regarding safe school supplies and food service. Beware if your child eats in the cafeteria, the food service staff does not always understand the concept of cross-contamination. My child always brings her own lunch even though the school insists they can feed her safely (one incident of the cafeteria worker not changing the gloves she was using to serve gluten pizza before attempting to serve my child “gluten free” pizza was enough for us).
3. If your child previously presented with learning difficulties, these may be alleviated once gluten free, but be prepared for this to take up to a year or longer. Even once your child finds it easier to learn, he/she may have some catching to do. If your child has been placed into special education classes or learning support classes, you may ask for reconsideration of this placement if your child is showing significant learning improvement. Many people do not realize that children who receive academic special education services tend to fall further and further behind the grade level curriculum as a result of the curricular modifications they are receiving.
4. Behavioral challenges may also be ameliorated once the child’s body clears out the effects of gluten. Outbursts, anxiety and depression could all improve as the child’s body recovers, but be PATIENT! This takes time!
5. If your child’s school allows treats for celebrations in the classroom, be sure to keep gluten free treats on hand at school for your child. There WILL be times when no one thinks to tell you about an upcoming celebration (like when the parent surprised my daughter’s class with donuts for all – except her, of course).
6. Face the reality that your child may suddenly lack in social invitations that involve food. As a previous commenter stated, always bring your own food for your child and make it “special” for that outing. These is where I make some dietary exceptions by allowing treats we might not eat otherwise to help keep my child’s emotions healthy, as well as her body.
7. Utilize the many wonderful websites out there to start preparing your child for the realities of dating, socializing, and college. Start the conversations early to assure your child that he/she is perfectly “normal”, but just needs to eat differently.
My bits of advice are practical.
1.) You’re going to be reading a lot of labels from now on. You’ll pick up pretty quickly what means “gluten.” Never stop reading those labels. Read them every time. Just because you’ve bought Brand A fifty times before with no problem doesn’t mean that they won’t go changing their ingredients on you without notice. Or that you won’t do something harebrained like pick up the wrong box.
2.) Self-advocate. I know you feel like a huge pain in the butt at literally every social event ever, but you’re forging new ground here. Someone has to do it. How do you think the diabetics got sugar-free stuff put everywhere? They self advocated. Now it’s our turn. We can do this. We’re not just fad dieters. We’re doing this for our health. Speak up.
1. Understand that the grocery store will become a scary and overwhelming place. Until you acclimate to this new life, bring a shopping buddy to help you do back up label reading. Read the label, re-read the label, then pass it to your label buddy for the last check. Having to read every stupid label is overwhelming, and after a while your brain will just raise the white flag, this is where your label buddy will kick in that extra margin of safety.
2. Grocery stores become grief stores. So much of what is sold is completely and forever off limits. Know this, and be ready for the weirdest bouts of grocery store tears. Once when the grocery store was out of my crackers, I wept, openly. This will happen, and its ok, after a while the tear portion of the program will taper off, and the angry section will open its doors. Losing so much food is bound to fire up the emotions, its normal and totally allowed to express your feelings.
3. When someone wants to go out to eat, ask them where. See if they have an online menu, and then see if you think with minimal alterations can you find something to eat there. I’ve told my friends after looking at an online menu, “I’m sorry, but there is nothing for me to eat at this restaurant. I’ll pass this time.” Often they will change restaurants for me, and other times when I know they really want to eat at a certain place, I make sure they understand its really ok that I dont go this one time.
4. If you have a favorite restaurant, that isnt gluten based ie pasta, pizza, desserts, go when the lunch rush is over and ask to speak to the manager/owner. Explain your food allergies, ask if they can safely cook for you. We had a fav Thai restaurant, and after sulking at home I finally got brave and went in after the lunch rush. With me I took my GF soy sauce, and fish sauce, and talked to the owner. Told them shellfish will kill me, and the gluten and the chicken and the egg makes me sick. He was very agreeable to using my ingredients. Now when I go in, one of the waitresses who knows me, points out each time what I cant have! I have made an food ally, and how cool is that?
5. You will feel odd and a bit shy, but you have to stand up for yourself. “No, you can’t cheat this one time. Yes, it will harm me. I know its so n’ so’s wedding/birthday/anniversary/etc. But if their happiness hinges on my eating a piece of their cake ……”
6. Anything that is spread on bread or crackers, peanut butter, mayo, margarine, etc, is a danger zone. Either buy a different brand, which is what I’ve done, or you need to buy new much smaller sizes and put masking tape on them with your name. Which ever you do, corral your spreadable items together in one shelf, one door shelf that is only for your items.
7. Traveling by air and finding food either in the airport or on the plane is usually impossible. Carry your own, and more than you’d think is necessary. Supplement with chips, fresh fruits, and nuts, bought at the airport.
8. Yes, this is hard, stupidly hard. And no, it never really becomes any easier. But being sick wasnt easy either, you can do this.
Depending on the severity of your ailments, discovering that gluten is the cause of them will be an immense relief. Yet, as you will find, that relief is temporary, analogous to the honeymooning stage of cultural shock. So go out and love life as much as you can at first – you earned it. Pitfalls of your recovery are inevitable, don’t let them ruin your new-found disposition. You will continue to grow and prosper as your knowledge of celiac expands, often through interactions with others within the community. This entire is going to change you – your values may begin to shift, relationships may end while others begin anew – no worries. Personally, i found myself with a new capacity for knowledge and activity and was awarded a full academic scholarship to a univeristy to pursue my real passion – nutrition.
Another important note;
Others from outside of the community will define celiac for themselves at first through their own perspective. That often leads to viewing celiac as something one “has” rather than how i prefer to describe celiac to others… “I am living with celiac.” Living being the most important word, of course.
Finally;
Derrick Bell defines courage as “a decision you make to act in a way that works through your own fear for the greater good as opposed to pure self-interest. Courage means putting at risk your immediate self-interest for what you believe is right.” This quote may become a mantra as your traverse the wonderful world of celiac you have been blessed to engage with.
In closing;
Love Love.
You will really need to advocate for yourself when going into hospital for any reason (surgery, etc). Meet with a dietician and really emphasize that you can’t eat anything wheat-based. Let them know that they can expect your tray to come back untouched if you see any bread or products that you know contain wheat. And count yourself blessed if your nurse seems well informed about Celiac. I work in health care and some of my co-workers were disgustingly ignorant about my needs, but others were wonderful.
I come from a family of wheat farmers and I’ve learned that they’re especially ignorant about Celiac. It can be namely isolating at family events when you come from a family of wheat farmers and your aunts, uncles, and cousins insist that you eat their crop. They aren’t worth the agony, and they won’t be around to help you deal with the aftereffects when you eat gluten to fit in with them. As harsh as it might sound, if they’re not willing to accept your new dietary needs, you might find it easier to shun them than deal with their unwillingness to see how much damage their crop does to your body.
When having family over for holidays, use disposable plates and cutlery to avoid contaminating your dish cloths and the rest of your kitchen. Have wheat consuming members bring their own buns, pre-sliced and buttered to avoid leaving any crumbs in your kitchen. If you need to wash any dishes, wash your dishes first, then the dishes that held anything glutened. Rinse the sink out and launder any tea towels and dish cloths that came into contact with the contaminated water. I also like to wear disposable gloves when doing contaminated dishes because the gloves keep the particles away from my skin (I get a bad rash on my hands after I touch anything containing wheat).
Bring your own buns, crackers/cheese, and sweets to any gatherings, and explain to your host why you need to do so. This will help you feel less left out and it will keep you feeling healthy. Cutting wheat-based buns and then cutting cheese with the same knife contaminates the cheese and will set you up for a “glutening”. Your host won’t have to worry about making you sick.
When dining at a restaurant, contact the manager before going and let them know about your needs. Have them make your food and bring it to your table so there’s less of a chance that a waiter/waitress will mess up your request. It also helps to have a sense of humour when dealing with ignorant wait staff. If you encounter a “snotty” waiter or waitress (someone whose attitude sucks when you tell them about your needs), feel free to give them snot back (both figuratively and literally). I had one such waitress and I got a huge kick out of leaving her some Kleenex art (cleaning out my nostrils really well and leaving the used Kleenex open on my empty plate). Others thought I was nuts, but I felt a lot better smiling as I walked out of the restaurant, as opposed to marching out of the restaurant in angry tears. Also, don’t be afraid to boycott restaurants whose staff have poor attitudes about your needs.
For the threads on Gluten Free communion, here are some links on where to purchase GF wafers:
http://www.almy.com/Product/70014
http://ener-g.com/communion-wafers.html
http://www.cokesbury.com/forms/ProductDetail.aspx?pid=352972
Recipe:
http://www.recipegoldmine.com/glutenfree/unleavened-communion-wafers.html
So much great stuff here. I would add, to the rule of always having safe food stashed, is that at some point you will be caught off-guard and not have anything available. Have a list of things common to convenience stores and vending machines that you can get in a pinch. But also realize that sometimes you may be hungry and it isn’t fatal. Skipping a meal is always better than getting sick. (A cup of hot tea helps.)
Bananas and Coke. Widely available; gas stations, vending machines, supermarkets, etc. Want to get wings? RedBull is GF.
Wings? As in chicken wings? Better make sure the chicken wasn’t infused with a gluten baste for moisture. And tea? Read labels and call manufacturers. Not long ago Tetley Teas had a cross contamination issue and the boxes stated “may contain gluten”. Many teas can be cross contaminated. This manual won’t be easy to write, that’s for sure.
Chicken? Here’s a quote from the response I got from Coleman when I asked them about their chicken. I wanted to know about the GF status of their birds, and if they injected anything into them.
“Thank you for your e-mail regarding Coleman Organic® Whole Chicken. This product is gluten free. We do not inject any solutions in our products.”
Found at Costco in factory sealed bags. $2.59/lb
Bonus; Berio olive oil and Kirkland Pink Himalyan salt. GF.
el Hefe tested and approved
Wings, as in Red Bull’s commercial, something to effect “Red Bull will give you wings”.
Oh. LOL Thanks for that explanation. I am old. Don’t drink the stuff. But we got a great heads up on a good brand of gf chicken and sea salt from my ignorance, so all is good 😉
I only drink RedBull if I have to shovel the driveway. Holy moly what a rush.
Bonus; Equal sweetener is GF. Costco. (I don’t work for Costco, but a buddy went to law school at U. of W. with the family scion; decent guy.)
Hot water and lemon? 🙂 True about the tea, though. I always have a couple of foil-wrapped bags that I know are safe and forget that it can be a mine-field.
I’m in love with loose leaf tea so I never even considered the glue on the bags to tea bags may contain gluten. What a trip! I’m such a tea snob though. I’m glad I dodged that bullet! I’m not a “foodie” in literally in other sense, but I will say you can tell the difference between tea bags and real tea – or maybe my belly was telling me before and I was just going into self preservation without even knowing!
The thing that I have found most “interesting” about having Celiac is that people think its just wheat, I in fact have a bad intolerance to Barley more so than the wheat at first, but now anything is poison it seems to my body. But its not so much the trying to make sure that anything you buy has non of the gluten in it, its the looks that you get if you stand looking at the goods in the gluten free aisle or even pick up something that’s gluten free. I get looks from, “Really? your not on that fad are you” to looks of “oh you poor thing I could not go a day without eating my bread” But like with anything you can either try and get used to it, give up and be in pain, or you can grab the bull by the horns and make the most of it. Just remember what you need to do to make yourself feel better, that yes, this is not going to be easy at first, and yes, people will treat you differently if you let them. Just take a deep breath and live your life like you have been doing for the past x amount of years, I’m also diabetic with half a thyroid, so its been hard to get used to, but now, I don’t even think about it, live your life don’t let it rule you, rule it!
Upon diagnosis, I cried, not because of the loss of all those foods I loved – I cried from sheer relief of finally knowing what my “enemy” was. The enemy had ravaged my body and nearly killed me. From that point on I knew what to research, study, focus on. Before diagnosis, the tests and the “we aren’t exactly sure what’s causing all these problems” answers that I was getting from the doctors and specialists, played heavily on my mental wellbeing alongside of Celiac disease. Instead of feeling sorry for myself for what I’d be losing food wise, I felt more able, more empowered to fight the demon that had robbed me of my health! I’d had enough of that old life of seeing the doctor every month for some new symptom, and now could exchange it for getting healthy.
I recommend any newly diagnosed Celiac/NCGS to relax and focus on how good it’s going to feel to feel good! Explore the world of recipes that have been freely given by awesome gluten free bloggers, don’t hit the brick wall of thinking there’s nothing to eat when there’s been so many who’ve gone before you to help you get back on the path to health by going gluten free. Don’t try to reinvent the wheel! Ask the gluten free community anything! Someone has been there and will gladly give you advice or empathy or the perfect recipe for that upcoming event you’ve been invited to.
You are not alone, and this community should be positive proof to you that going gluten free is a prescription for heath that is so very worth embracing and not looking back!!
Stand firm in your goal to become healthy. The enemy has been exposed and it is gluten! Now go fight for your health, and stop spending so much energy on the memory of those foods that robbed you of that health!
I love this idea thank you
I have celiac and dermatitis herpetilomovirus (aka Durhings Disease). The Durhings is my major issue. Many with Celiac have the blistery itchy reaction more than the intestinal issues. Before Durhings formed it’s ugliness to my body, I cheated. I wasn’t diligent removing gluten to the severity I had to after Durhings. Yes, I ultimately didn’t outright eat gluten, but I didn’t really scrutinize a label or separate cooking utensils the way I needed to do for my safety
Now to add my twist to this submittal. I was a chef and now I am a health inspector for the last 20 years. The new FDA requirements that were due in affect August 5, 2014, will help the newbies (and some veterans) navigate store shelves a little better AFTER the old inventory finally leaves the shelves, but what about eating out?
This is where all of you need to work with MY counterparts in your local health department. If a restaurant offers gluten free menu items, they are required by law to meet the proper preparation from delivery to table to prevent cross contact.
They can’t learn how, unless they get guidance from someone like me or allergen training through ServSafe, the national restaurant association or there are several other training courses through several celiac organizations. It would also be beneficial for people with celiac to take some of these options themselves. Most of us “gluten” ourselves through cross contact at some point, even if it’s just overlooking something ordering food at a restaurant
Being proactive to educate the people who can win us as loyal customers makes them money and keeps you safe
I just wish I was younger and had the stamina to get back into the restaurant business. I would have the best 100% Gluten free restaurant.
I know they are on the horizon and can’t wait for this to be the go to money maker. The potential is endless
This is just a different perspective than the fear. Being diligent is a must, but getting our disease to be understood is even more important. We are the forefathers of this disease and can and will make it better and easier for our kids and generations to follow!!
Bit of brain fog. Even spelled my name wrong.
Spelled my own name wrong. Bit-o-brain fog this evening
When someone tells me that they have just been diagnosed with Celiac disease,gluten intolerance or gluten sensitivity, my advice is always the same:
Concentrate on naturally gluten free foods that you CAN eat rather than what you can’t. Fresh fruits, veggies, meats (not processed or breaded), nuts and seeds are all naturally gluten free.
There are an incredible number of wonderful gluten free recipes out there. Check out my blog (it is undergoing some changes) http://www.glutenfreewithauntjayne.com and http://www.allrecipes.com
Go to http://www.celiac.com to learn about cross-contamination, hidden gluten and so much more.
Join a support group. There are plenty of groups on Facebook but look for local groups who physically meet.
There is also a great website called Gluten Free Faces (Like a gluten free Facebook)
Living gluten free is NOT a bad thing. Living gluten free has taught me the importance of eating the right foods and avoiding bad. My Celiac diagnosis is one of the best things that ever happened to me!
I think this is a great idea. These might be repeats, but my advice would be:
– It is okay to grieve when you are first diagnosed. It is a huge lifestyle change, and it will take time to adapt. I cried a couple weeks after diagnosis because I REALLY wanted chicken nuggets from McDonalds. I know, I know, super healthy, right? It wasn’t the actual nuggets I was upset over, it was the convenience of being able to just grab food anywhere. Go easy on yourself. It will get better, I promise. However, with that being said, there is a point where you need to accept the diagnosis and move on with your new, gluten free life.
– You will make mistakes at first. Unintentional mistakes are okay, but cheating on your diet is not. We have all done it. Don’t blame yourself.
– Find your support system. There will be tough times, especially at first. Hopefully, your support system will be your family and friends, but that is not always the case. Find a celiac support group if this is the case.
– Be your own advocate. I have struggled with this, but it really is important.
– Stop eating out (temporarily). I wish someone had told me that. I did not get better until I quit eating out for a few months. I then learned the safe, and not so safe, places for me to eat. Don’t worry, you can eat out and socialize with friends, but the initial few months are the worst. It will get better.
– You will find gluten free foods that you like and actually enjoy eating, but it is a trial and error process at first. Be patient, but things will go back to normal. YOU will feel normal again.
Hey everyone.
I was diagnosed 7yrs ago and I’m sorry to say that I am just as annoyed about it today as I was then! But I do eat a gluten free diet because it is best for me to do so.
When I was diagnosed I had none of the ‘normal’ symptoms of coeliac disease and had no idea that my specialist was even testing for it. I was at the hospital with my son when I got a call from my Dr telling me that I had coeliac disease. I couldn’t believe it and was really upset. I think this is why I had found it difficult to accept.
I have heard of a lot of people having all kinds of stomach issues and constant visits to their Dr’s before they are diagnosed with coeliac disease. I was not like them though and the diagnosis came from far left field. My Dr is really great however, and once even apologised for diagnosing me!! I said why? It’s not your fault! I had a the biopsy which confirmed the diagnosis and was sent to a dietician. I decided that even though I was upset about it, I would go gluten free because I didn’t want to die of bowel cancer or the other coeliac related cancers. (My dad had died a few years earlier and I think that he may have had it too) We have no family history of the disease though.
My advice to the newly diagnosed is join your local Coeliac Society because nobody knows it like they do. It was when I went to the one in Melbourne that I realised that my life was not completely over….I could still eat a Snickers bar!!! They gave me a sample bag of food and a food guide book and a recipe book. They were my life savers. I’m still a member now and look forward to the magazine and newsletter every quarter. One of the unexpected results of eating gluten for the first time six months after my diagnosis (at Christmas) was that I was so sick and couldn’t even make lunch. I learnt after that, that after exactly 2 hours after eating gluten I would be very ill and would feel terrible for a few days and up to two weeks later. This was wierd to me because before I stopped eating it I was fine!?. Obviously the only time I eat it now is by accident and only when I eat outside the house.
Eating out is still the one thing that I find most difficult as there are still many people that just don’t understand it and like a lot of others, most times I choose to go hungry rather than hope for the best but I do try and plan my trips out.
My greatest joys now are the annual Gluten Free show where I can eat anything I want and the dedicated gluten free bakery that is 20 mins away that make all kinds of yummy things.
The small things that help are the few friends and family who care enough to cater for me even though I plead with them not to go to any trouble – I love these people!!
Penny, I’m so sorry to hear that you are still having a hard time with your diagnosis. Your doctor did a wonderful thing letting you know and very well could have saved your life had you not known about it. Some food for thought… My grandmother and I were the only ones in our family that had a Celiac diagnosis. Recently she died from pancreatic cancer as a result of years of not knowing she had Celiac disease and eating gluten all of her life. She had neuropathy, arthritis, diabetes, GERD, IBS, gastritis, severe body aches, insomnia, restless legs, distorted vision, headaches, and then the cancer that killed her so quickly. She could have lived years longer and not suffered had she been diagnosed when she was young. It was educational for me because I had been diagnosed before her and that was the only reason her doctor finally tested her for it. I wish with everything in me they had thought to test her sooner. Her expensive GI specialist never thought twice about Celiac disease but instead gave her every prescription under the sun for IBS and pain.
Be grateful that you are one of the lucky ones who hasn’t had to suffer severely from this disease and that you had it caught before symptoms could appear. I suffered for 20 years from severe depression, migraines, infertility and cancer before the doctors finally found out what was killing me. This diagnosis saved my life.
I wanted to add some of the training I have been working on for restaurants. This can help newbies navigate:
Cross contact means that a non-gluten item comes in contact with, or touches, an item with gluten. Even a speck of gluten as small as the size of a grain of sand can travel through utensils, cookware, prep tables, frying oil, etc., and get into food, which can cause harm to someone with celiac disease. There is even some evidence that gluten can be spread airborne, especially by flour products.
Overall, the food handlers’ understanding of gluten was poor. In 1 out of 3 kitchens, gluten foods were not separated from gluten free foods.
A recent survey found nearly 25% of food workers thought that someone who ate gluten could drink a glass of water to “dilute the gluten”; 23% thought that people with celiac would be O.K. consuming “a small amount” of gluten; and 21% believed that people could just pick gluten foods off their plates and suffer no reaction.
And yet, 80% of those surveyed said they were confident they could provide a safe meal for customers with Celiac. Alarmingly there was no association between the respondents’ knowledge and their comfort level in providing a safe meal to Celiac customers. Staff with high comfort and low knowledge are potentially dangerous, as they may convey an exaggerated sense of competence to their customers, giving them false reassurance.
Cross-Contact Concerns in the kitchen:
• Do you clean or is there a separate prep space for
gluten-free food?
• Do you use clean or separate cookware and utensils for
gluten-free food?
• Do you clean the grill before preparing gluten-free food?
• Is there a dedicated fryer or do you change the oil for
gluten-free food?
Dining questions:
• Are there croutons, wontons or crispy noodles on the salad?
• Does the salad dressing contain wheat or flour?
• Does the soup contain flour or barley?
• Has the food been marinated in any sauce? Does the sauce
have flour, soy or teriyaki sauce?
• Has the food been dusted with flour before being sautéed or
fried?
• Is the oil used for the French fries also used to make the
other breaded products? Are the French fries coated with
flour?
• Are artificial bacon bits or other meat substitutes used
on potato skins and salads?
• Are your mashed potatoes from a mix, or from real potatoes?
• Do you use imitation crabmeat or seafood?
• Does bread come with my dish?
• Is my dish garnished with fried onions?
• Will the ice cream come with a cookie?
Common items with hidden gluten:
•Salad Dressings and Marinades:
Salad dressings and marinades may contain thickeners or other unsafe ingredients. Suggest ordering a lemon wedge and oil on the side, or balsamic or wine vinegar and oil.
•Soups and Sauces:
Soup bases are often used as a foundation for soups and sauces.
Bases may contain ingredients comparable to bouillon or broth, i.e., hydrolyzed vegetable protein, natural flavors, etc., and should be carefully checked. Roux (pronounced “roo”) is the thickening for most sauces and is a combination of butter and flour. It is safest to avoid sauces. Canned sauces are also used in restaurants, so ask the chef to check the ingredient listing. Soup base will sometimes appear in sauces.
•Prime Rib and Other Meats:
If prime rib is too rare for the customer’s taste, the cook may “cook” it in a pot of au jus until it reaches the desired doneness. Au jus may come from a can or mix and contain unidentified hydrolyzed vegetable protein (HVP). Seasonings are often used in preparing meats; their ingredients should be verified. Self-basting turkeys and imitation bacon bits may contain HVP or textured vegetable protein (TVP) and need to be checked for safety before using.
•Fried Foods:
The oil used to deep-fry foods may be used for both breaded and non-breaded items, in which case they should be avoided. In large restaurants where French fries are cooked in separate fryers, there is less chance of contamination.
•Rice, Starches, and Hash Browns:
Many hash browns are frozen and pre-packaged with starch added. Ask the chef what other ingredients have been added during cooking. Many rice pilafs may have seasonings or added ingredients that must be avoided. Plain steamed or baked rice cooked in water can be substituted.
•Dairy Products:
Non-dairy products are sometimes used instead of dairy products in restaurants. The three most frequently used non-dairy products are non-dairy creamer, non-dairy “sour cream” topping, and non-dairy whipped topping. Verify that the ingredients in any non-dairy substitutes are okay.
Hope this helps!!
Tee
These are great tips for eating out! I just wanted to add that sometimes baking potatoes are dusted with flour before wrapping in foil to keep the skins dry during cooking so a person should ask about that before ordering a baked potato. And scrambled eggs and omelettes often have pancake batter added to make them less crumbly. Servers are frequently unaware of these practices.
Hi there!
Our whole family must avoid gluten. This post is asking you all to ask for gluten free, support gluten free, and write letters to Kellogg’s and Kraft any any other company asking for gluten-free product development. So many cereals would be okay if it were not for barley malt flavoring. An easy fix! Oats can be grown pure and wheat free… demand that all oats should be uncontaminate.
We are a minority, but willing to vote with our wallets.
As for products, we love the Catelli brands of pasta. Superior and delicious.
Pet peeve: Kraft macaroni and cheese will not sell the cheese product separately, nor come up with a gluten free option. I have to buy the product they’ve got, gut the boxes, harvest the cheese packets, and recycle the rest. Daft, but I cannot find a good replacement for the cheese.
I will offer my two cents – I’m about three+ months into my diagnosis and it does get a little easier each day, until gluten poisoning infiltrates a meal or I have a mini-meltdown that I can’t eat the pizza that my six closest friends are gorging on at dinner. Here’s what I wish someone would have told me:
1. Allow yourself a mourning period. It is a huge shock to realize all that you have to give up just to maintain mediocre health (I suffer from more of the auto-immune aspects: achy joints, fatigue, overall malaise). Feel sorry for yourself for a couple weeks, but whatever you do, DO NOT CHEAT.
2. Get comfortable spending an hour in the grocery store reading labels. Always abide by the adage “When in doubt, go without!” Your guts will thank you. If you don’t understand one of the ingredients on the label you’re reading, put it down.
3. Prepare to spend a lot more on your groceries. The gluten-free options/substitutes for regular, everyday food are hard to find and expensive. I spent probably a couple hundred dollars more a month on just regular groceries now that I eat GF. It’s tough, but you don’t have a choice.
4. You may not feel 100% better by just cutting out gluten. I felt immediately better, but about a month in, I regressed. Turns out, I was extremely Vitamin D deficient. Hound your doctors if you have to so you can get to the bottom of whatever ails you.
5. The toughest thing for me: prepare yourself for people to disregard your disease. People will misunderstand it. People will be ignorant and rude. People will make fun of you. People are uneducated about Celiac disease, and I truly believe it is the responsibility of each and every one of us sufferers to educate the world about what we live with on a daily basis. I never let anyone get away with making fun of this disease, calling it an allergy, telling me to suck it up, or saying that I am one of “those” people. YES, I am one of those people. I kindly remind those around me that I would never have chosen this path for myself, but since I have been given no choice, I do whatever it takes to remain healthy and vital.
To any newbies: hang in there. It gets easier.
There are so many excellent comments already! This book is going to be a great resource.
My top 3 tips!
1. Look out for yourself. You are your best advocate. Speak up, ask questions, don’t be ashamed or embarrassed. (this one was especially hard for me)
2. Don’t be afraid of food. Do your research, know your body (in case you have other intolerances or allergies), find what works for you. There is a learning curve, you will make mistakes and there will be people who will tell you that gluten lurks in places that it doesn’t, like rice or potatoes (this is where research comes in).
3. Always have snacks! Seriously. Fruit, nut butters, protein bars, chocolate, whatever. As long as it’s portable, safe, and yummy. (I have a kind bar that has been in my purse for half a year because it never sounds good)
Hi all.
I live in Brisbane, QLD, Australia.
I was diagnosed with Celiacs when I was 14 years old. I am now 26 and have been happy and healthily living entirely Gluten Free the whole time. When I was first diagnosed, I could not 100% tell if my symptoms were from Gluten contamination or just being a teenager. Nowadays I have it down to a fine art. I know usually within 60min if something I’ve eaten/touched is going to make me sick. Gluten effects me much more severely than it did 12 years ago.
Send me a msg on Facebook, I’m happy to answer any questions people might have about living Gluten Free or Celiacs.
https://www.facebook.com/IndyB47
My advice to newly diagnosed celiacs:
You’ve done damage to your small intestine and you need to give it a long time to heal. It took me one year to feel better. Here are some tips that I hope help:
First of all, you’ll need to restructure your kitchen. Buy new appliances and utensils that are strictly for gluten free foods. Keep them separate from any appliances (toaster) that may be used by other members of the household. My parents keep all my gluten free things in the utility room far away from gluten.
Second, find social media support. It is really hard to adjust your new lifestyle so you’ll need a community to lean on and to whom you can ask questions without feeling ashamed or embarrassed. Following Gluten Dude is a great start! I also joined several gluten free Meet Up groups so I can meet other people in a similar situation. It’s really important to surround yourself with caring people and we are generally just that! This is especially true if immediate family members do not take the diagnosis seriously.
Third, always bring a GF granola bar or something high calorie with you. Shopping trips sometimes run longer than expected or you decide to stay out longer. I have made the mistake many times of not being prepared and hoping to find potato chips or anything to curb my hunger. Not the wisest or healthiest choice and many times I just end up hungry.
Fourth, you might end up with other food interolances/allergies. Figure out what makes you feel bad and then avoid it as much as possible. In addition to gluten, I also have to cut out dairy, garlic, and onions. Many other celiacs cannot tolerate soy. It’s different for everyone but we all have the same goal of feeling good and being nice to our super sensitive guts.
Lastly, you will most likely get angry and upset and frustrated and that’s okay. I still sometimes feel that way 11 years after diagnosis. You may be tempted to eat gluten but please, please do not give into the craving. A minute on the lips is six additional months healing time of the gut. Find something gluten free and delicious instead. There are so many options out there now and it’s just not worth it.
Good luck and know we are cheering for you and want you to be well!
To clarify – I say “may” or “might” because every celiac’s reaction is different and what happens to me might not happen to someone else.
I am currently looking at being diagnosed with celiac disease and my first reaction was – but I don’t have any symptoms.
The more I read up on it, the more I realize I probably do have symptoms, but not the ones I thought were associated with celiac disease.
I just stumbled upon this website tonight and it and this thread is EXACTLY what I need right now.
Fantastic! I love your post Andy. Many people think that the only symptoms people with Celiac have are digestive. That is far from true. My main symptom was severe depression for many years and a general feeling of malaise. This is why this disease is often overlooked and misdiagnosed because of the myriad of bizarre symptoms.
Here are some additional symptoms that people experience related directly to gluten:
Migraines
General body aches
Fatigue
Insomnia
Brittle nails
Hair loss or damaged hair
Itching burning skin (dermatitis herpetiformis)
Brittle bones (easy bone breaks)
Depression and anxiety
Grieving the loss of Paul Newman’s frozen pizzas and Subway steak and cheese sandwiches and fried flounder with hush puppies and Dunkin Donuts and other favorites is normal. It will pass. Sort of.
Lay in a supply of Reynold’s steam bags. You can use them for fish (tilapia!) sliced yellow squash or zuchinni or carrots (or use baby carrots) or green beans or small potatoes or sugar snap peas or brussel sprouts – all items you can buy pre-packaged in the grocery store! These items can also be roasted at 425 degrees by slightly tossing with olive oil and seasoning. This is also easy cooking and just what a hurting healing intestine needs.
Turkey burgers are wonderful!
Beware of CORN – as in corn flour and corn syrup and cornstarch and sugars made from corn like Xylitol. These caused me as much problem as gluten until I figured out I also had a corn intolerance.
Same goes for fructose. Make sure you don’t have a fructose intolerance. I wil never forget my unfortunate fructose incident during the first three months when I thought I was giving birth to an alien.
Google FODMAPS.
Accept the healing may be slow but remember to celebrate the small gains.
Yes, it’s a great idea. I haven’t read all of the other comments but I have 2 main points. Overall I feel very positive about my diagnosis – that was a proper full investigation of bloods and gut biopsy (not self-diagnosis). So the good news: Empowerment – as I understand more and more about what CD and the effects of auto-immunity have done to me, it has been totally enlightening and empowering to look back and realise why things happened. And because the causative agent (gluten) has been removed from my diet these things won’t happen any longer. The bad news is the converse: the time it takes to understand (18 months since diagnosis) and unpick all the effects caused by deterioration over many years; to identify all the (gluten-free) foods that set me off with some form of reaction – 9/10 times a mood change rather than a bowel problem. In this time I also seem to be reliving some latent viral infections that I had years ago, perhaps as my immune system can finally get on with clearing them out. Final note – despite having been told by me that direct relatives are 10x more likely to have CD even if they are symptom-less and having been pointed to the literature on the subject of CD and it’s genetic link, – my direct relations haven’t bothered to have a blood test. In fact my mother’s father had MS, my mother’s mother had RA and I have CD but my mother doesn’t think it applies to her. A month ago I finally got her to tell her GP and now she’s going to be blood tested. At 89 she might be one of the oldest people to be diagnosed!
Great post and terrific idea for a book. I have been thinking about writing my memoir about the first year of diagnosis, mine being fairly recent. It touches on many of the same things written in the comments to your post.
One of the things I was most struck by with this disease is that very quickly I had become a more educated person on CD and gluten intolerance than my general practitioner ever would. We often look to our GP’s for that first reassuring moment when he or she says to you that s/he knows what to do for you. Many of us don’t get much input back except, “Eat a gluten free diet for the rest of your life.”
The second significant behavior I noticed was in myself. I noticed I hated both eating out and I dreaded the bi-weekly trip to the grocery store(s) in the initial coping phase post-diagnosis. Why? The exhausting process of researching, searching, ingredient reading, analysis, and trial-and-error was just that — exhausting. Following the previous years of unexplained illness, fatigue, and malnutrition, it’s a welcome relief to have a solution, yet to implement the solution takes an extraordinary amount of time and energy that most of us pre-diagnosis have never lived with. I, like many others, felt depressed around food, meal planning, and eating encounters that were difficult to control.
Finally, I wish someone might have told me earlier that there are at least two distinct questions to answer at the initial diagnosis moment: 1) How do I stop the damage that has been done to the villi of my gut (answer: stop eating gluten period, and learn how to do that effectively), AND 2) How do I HEAL the damage that has already been done to my villi?
Question #2 isn’t something that most of our immediate medical community sources have clear answers to. You may need to read a lot of medical journals to get your answers. But for myself, an active triathlete and dancer, it is critical to be thinking about ways to heal the gut, not just cease any more damage. In my case, I actually needed to change the intensity of my activity (and for a few weeks, cease that activity altogether) to give my gut some time to heal (what I call a “healing trajectory”, vs. a cessation of symptoms). And as many of you have already discovered, eating a bunch of processed GF foods isn’t an answer to Question 2, though it could be a part of decreasing the adverse symptoms of Question 1.
Healing the damage done to the villi is important. And then healing the emotional flooding that comes post diagnosis is another important aspect, one that I think a book like this one will be able to address.
Good luck to your writing project, and to the entire GF/Celiac Disease community.
Good post, Imei – thanks for writing it. I too realized that I needed to do something to “heal” my gut. Jennifer Esposito’s book had mentioned “glutamine” and I did some research on that. And found a great article “L-Glutamine, Gut Repair, and Celiac’s Disease”.
http://www.nourish123.com/blog/l-glutamine-gut-repair-and-celiacs-disease/
I got the supplement and it has been phenomenal for me. I truly credit it for stopping the pain and starting the healing. I have wondered how many other celiacs have used this supplement.
HI Cindi,
Yes, what I also discovered that my GP and my GI doctor did not mention was L-Glutamine. After doing some careful research, I selected a specific brand, Pure. It appears that many naturopaths know about L-Glutamine for healing the gut; I chose the brand based on purity. Word on the street is that it is the rich man’s version of baking soda without all the extra sodium; I would tend to think that was an exaggeration, and more likely, baking soda is the poor man’s version of Alka Seltzer!
Yet I understand that for the purposes of Gluten Dude’s original post, we asked to offer “I wish I had known”s, and not necessarily specific recipes or meds or treatments, just options. Having said that, I give the Pure brand my personal thumbs up.
Incidentally, I first encountered L-Glutamine not for post Celiac Disease treatment, but for some of the GI distress I encountered from eating gels that triathletes often use. The majority of them have corn/maltodextrin in them, and after a couple of hours of eating gels, my stomach would just reject them. I was introduced to L-Glutamine by someone in the fitness industry to counter that problem, and then AGAIN post CD diagnosis as a treatment option to heal my gut.
If the initial healing/recovery time is typically 6 months post GF diet introduction, AND most people will have an “oops” or two during that initial phase, it seems to me that a gut healing regimen is critical. Glad you came upon the same information as well. It tells me that these communities are working.
-imei
Thanks for responding and for the info on Pure brand. I’ll check into that. I’m currently using NOW brand, but it definitely has worked well.
The other thing I also discovered during the first few months was my corn intolerance. That was thanks to some cornflake crumbs used in making salmon patties. Corn does not agree with me (as in it makes my gut hurt!) and from the reading I’ve done, a corn intolerance is not uncommon in celiacs. But thank goodness I found that out – no more corn flour pasta. The rice flour pasta is so much more gentle for me. I also learned Fructose is a big no-no for me. Esposito’s book also recommends a supplement, UltraInflamX, and I tried it – and had a night of agony! I checked ingredients, did some reading, and could only surmise it was the fructose. I steer clear now.
Yes, these communities have been a godsend for me – and gluten dude is the best one!
I also was recommended to use L-Glutamine by my integrative medicine doctor post diagnosis. I have been using it for a few months, but used it 6 years ago during another extensive round of trying to heal my gut. I use the Now brand and have liked it. There are a lot of other healing things my Dr. has me doing, she does integrative medicine which is why she is in the know and she already had me doing many of these things (and those listed in Jennifer’s book) even 6 years ago pre-celiac diagnosis. Why we never tested for celiac until this year, I don’t know :).
One of my friend’s mother has had Celiac Disease for several decades, and she suggested to me to re-examine the groupings of foods I react to for additional clues. For example, I’m allergic to sorghum and oats, as well as corn. Therefore, it would make sense that I am likely also reactive to millet, and for the purposes of decreasing bowel inflammation, I should avoid the millet family entirely, no matter what any Celiac association states about their safety. While they might be “safe” for Celiacs, they aren’t safe for me.
What this means for the CD person is that we have to know ourselves so well that even in the face of compelling “evidence” that applies to the general population, you can be the anomaly. And that’s OK.
I’m still a bit bummed there is likely no hope in this lifetime for a GF beer for me (many are made with oats and/or sorghum). Pass me the wine, please!
That’s very good advice to examine the food groups…
I’ve also found that too much salt on food (like putting it on roasted veggies) will make me feel as if my intestines are burning/on fire. So I am going very light on salt for now until there is more healing. I guess using salt initially is just like pouring salt on a wound. 🙁
Cindy – hmm. Without more information, I’m reticent to “call it”, but maybe it suffices to say that there may be a few different reasons why your gut responds to an increased salt intake like they are “on fire.”
Personally, I learned the hard way that I was actually on the other end of the spectrum. Due to malnutrition caused by the symptoms of Celiac Disease, I was on the low end of blood sodium and potassium. During intense exercise, I don’t sweat very well, which in my case is a good and bad thing. In hot weather, I’m in danger of hyponatremia if I don’t get the electrolytes down pat or drink too much water because I’m thirsty. More particularly, I would get through an entire race, only to succumb to horrid cramping afterwards, much of which were resolved by ingesting of all things, salt and electrolyte tablets (gluten free!) beforehand. The burning sensation and cramping during exercise ceased. I can now swim for two hours without the cramping I experienced earlier this summer, which is a huge improvement.
So you might want to do a research as to why the burning sensation, i.e. is your gut actually “leaky”, do you have an ulcer or some kind of weak portion of the gut, etc., even while you’ve chosen to abstain from salting your food. For most of us, we don’t need the added salt; for myself, my coach smiled when I said I ate a bag of Pop Chips the night before a race and had no tummy issues (side stitches, GI distress, and hamstring cramps being some of the more common ones).
Isn’t it FUN to be a detective? 🙂
well I’m going to ponder on your info…thank you…