Celiac is such a strange disease.
You can go stretches where you feel totally fine and you find yourself thinking that you’ve got it all figured out.
But then you get hit by god knows what and you become a prime candidate for the “Miserable A**hole of the Month” Club.
It’s celiac’s way of saying “Hey…I’m still here…and I always will be.”
It’s pretty simple…we can never let our guard down….ever.
Worse things in life, but still not an easy thing to live with.
I was reminded of the frustrations of living with celiac disease recently by the following three examples.
1. I’ve been feeling great. Since my lack of energy post a few weeks back, I’ve been taking Nutra Summa supplements and vitamin B-Complex consistently and have noticed a huge difference in my energy and my focus. Heck…I was all set to write a post titled “Finding Your Energy Doesn’t Need to B so Complex” because, you know, I’m such a clever guy.
But then this weekend I felt a bit off and yesterday just sucked…plain and simple.
And I’m up at 5am today with a simple goal of making this my most productive day EVER.
2. I received an email from a teenager with celiac who is really, really struggling. It reads as follows:
I don’t have anybody’s support; this is a very lonely disease!! My mother just gives me the money to buy my food. I keep everything separated but I feel so lonely. I feel nobody takes me seriously!! And there is gluten all around the house, everywhere!! They don’t respect me; I’m so angry!!
Sometimes (every day) I feel I wanna give up, I wanna die, but I still have a little hope! Its like I wanna die but i actually don’t wanna die. I don’t know how to express it. I hate eating and cooking, I hate everything!! I don’t wanna worry about food anymore.
I got glutened this week, after i saw a little improvement. I ate a cookie. I know I shouldn’t have eaten that cookie!! but i felt tempted and very, very, very sad that day. I feel very very bad now. I’m sick of being sick!! I wanna heal, I lost a lot of weight. Everything’s a disaster. I need help
How many of these types of comments have I posted over the years? Why is it that our disease simply does not get the respect that it deserves?
I responded to the above person as follows, but if you could show some words of support, it would mean the world to her.
Try your best to be as patient as humanly possible. It can take much longer than one month before your body starts to heal and you begin to feel better. If I can recommend something…try to eat very, very healthy for a few months to give your body the best chance to heal. East mostly whole foods (meat, fish, veggies, fruit) and stay away from the processed gluten free food, at least for a little while.
Don’t beat yourself up over the cookie. It happened. Move forward (but please don’t do it again). The sooner you can accept you’re gluten free for life, the sooner you will begin to mentally move forward.
Keep the faith. You will heal. You will get your life back. I promise.
3. I wrote a blog post some time ago titled “I Don’t Want Celiac Disease Anymore“. It must not have been one of my better celiac days. Anyway, someone yesterday left the following comment on that post.
Normally I’m quite positive and optimistic that I can do this and fight anything that comes my way. But right now I feel broken and defeated. I really did not ask to have celiac disease and I’m doing my best to deal with it. But I’m starting to think my best isn’t good enough…When I start feeling normal and healthy something always comes up and knocks me back down.
It’s a vicious cycle with no rule book!
You said it!
Thanks for posting this. I am going through a rough patch right now myself, after having a “feel great” summer. I don’t know what is going on, but yeah, celiac is just stopping by to say hello!
I got an infection last month, and ended up in urgent care, and while they were prescribing me antibiotics, I reminded them that whatever they gave me, it had to be GF. They looked at me like I was nuts, and these were medical professionals. After some time, a nurse practitioner came in and said, “Do you REALLY have celiac disease? Why do you think you have it? There’s not much gluten in medication.” And if I hadn’t been so sick, I would have just lost it. I explained to her that celiac was there in my medical record, same as all of my other conditions, and that’s all she needed to know. SO angry! I get tired of explaining myself, looking like an obsessive freak, and most of all, I am tired of defending myself. Add into the mix not feeling so great the past couple of weeks, and I am done.
So, yeah, thanks. Sometimes I need a reminder I’m not alone, even 6 years into this lifestyle. It never seems to get any easier for me, mentally.
Celiac…the only disease where you need to defend yourself. Just wonderful.
I understand too well, how tough dealing with a chronic disease can be. I was diagnosed with crohns in 2011 on my 21st year. Until then, i’ve always had stomach issues. A colonoscopy revealed severe inflammation of the gut lining. I was losing alot of blood. My idiot doctor recommended I just take the meds, not worry about my dietary questions because ‘they won’t help’.
Well, after 2 years of struggling, i’ve found that yes, there is always going to be setbacks. I’ve been gluten free since 2012, sometimes experimenting by having the occasional crispy fry thats been ‘battered’ (btw, what the frig, is it just America that has to flour-batter even things that don’t require it?!?! namely french fries!!?) But even the smallest amount causes gut issues with me.
I understand how terrible it must be to have celiac disease, and to get rid of gluten. But I have to say, someone like myself who dislikes medicine and will put myself through a slow-healing hell of supplements (turmeric, slippery elm, aloe vera) instead of the meds, losing blood, and weight constantly, that the message is: it could always be worse. After a month of struggling in the bathroom, i’m still losing some blood, but the aches and pains are no longer and I’m able to eat WHOLE food again. That was a big one for me.
Gluten free has become easy for me, but I am not celiac. Its the temptation of being out with friends or being around the glutenous foods that creates a stir in my life.
I’m here to offer support. I understand the pain and all that comes with celiac disease, because unfortunately, those of us dealing with exacerbated gut problems like crohns/colitis, know all too well what you are dealing with + more. It’s very much the same disease + one more.
Where to start? To the 17yr. old – be kind to yourself. As G.D. advised, eat whole food – there are delicious choices available. You might find always having some back-up food with you a good plan. You’ll work it out, you really will.
Yup, just when you think you’ve got this thing nailed, you’re reminded that it’s a twisty beast. It’s more than “not feeling well at times” because that’s par for the course of being human. It’s the “deep tissue not feeling well”, as I call it. You can have your lack of sleep time, your virus time etc but then there’s “this”. You rack your brain to figure out what you could have possibly eaten and just can’t find the culprit. I’m NOT referring to being truly poisoned – that leaves no doubt and several days/weeks to return to “normal”. BUT keep in mind, the good days and weeks are so good. Feeling good can AND will happen.
So well said Sue!
I just started on this GF journey about 6 weeks ago and some days I feel amazing and others I just feel like crud. It does get frustrating having to make most of your food and having to explain why you can’t have a piece of that awful office birthday cake. But I was fortunate enough to go to the GFAF expo in Dallas this past weekend and I got to meet some really amazing folks. Learn about their stories and have a whole place where I could eat almost everything! I am lucky though. I have a BF that has gone completely GF and dairy for me so that our house is safe. He doesn’t complain and understands when some days I just need to lie on the couch and b***h..lol.
To the teenager. I agree with Sue…first step is being kind to yourself. You found this great blog and you can find others. Find a celiac/GF chapter in your area. Meet folks like you. There are a bunch of us out there 🙂
“some days I feel amazing and others I just feel like crud.”
Pretty much says it all.
To the 17 year old, my son was diagnosed this year and he is 13. You guys are in a tough stage of life to begin with and to add it a Celiac diagnosis can be so overwhelming. It’s weird to be different. My advice to you is to give it time. Eat well and you will start to feel better. He’s going on 9 months of gluten free and we are starting to see results. His numbers are just about in the normal range, he’s feeling better and gaining weight. The beginning was really hard for him (and for me) because there is so much to learn. But you will. He is an expert at it now and can go places with his friends and figure out what he can eat. He’s very upfront that he can’t eat it and offers no apology for it and he hasn’t run across anyone that hasn’t been accommodating. Don’t be whiny, don’t make a big deal about it, don’t apologize for it, just take care of yourself. He has also found that there is plenty of food that he used to eat that he can still eat. Those that tell you to eat “clean” or healthy will cringe but being a teenager, I think it’s not reasonable to expect that you won’t eat junk food. He eats chips, Jax, Milk Duds, ice cream. Change up the things that you used to eat but find substitutes that exist in the real world. You don’t need expensive gluten free food all the time. You can have Perdue frozen chicken fingers (they have gluten free ones that are great), tater tots, some Uncle Ben rice packages, frozen broccoli and cheese, hot dogs and baked beans. He brings packages of pre-cooked rice, Bakery on Main gluten free instant oatmeal (awesome!) and milk duds almost everywhere he goes so he always has something he can eat. McDonald’s milk shakes and a salad are good when you are out. Many pizza places now have gluten free pizza. Many places have a dedicated fryer for french fries (always ask though). If you have to cook for yourself, make simple meals, baked chicken, baked potato and a salad. We wash our pans well and then I cover them with tin foil to prevent cross contamination. Don’t make it complicated. Balance eating really well with some of the normal things you used to eat and it won’t be so hard. Make sure you take a multi-vitamin and don’t let this run your life. It’s only food. You have so many other great things going on at 17 and this is a change in diet, you need to read labels and make alternate choices. There are plenty of other things that you could have had that could be a lot worse. If you were trying to lose weight and went on a diet, you would make different food choices and not think much about it. Try that mentality with Celiac. Best of luck.
“Don’t be whiny, don’t make a big deal about it, don’t apologize for it, just take care of yourself.”
Yes, yes, yes and yes.
As for eating healthy, my take is that upon diagnosis, your body is a mess and eating processed anything will not let you heal. I wish somebody gave me that advice six years ago.
….. did I see you are taking a B Complex and you felt better? ( see, told ya. LOL) but now you feel yucky again? well, you did go away last weekend, right? free drinks? dining out? not your usual whole -30 plan right?…..just sayin….. sometimes 1 +1 = 2 my friend. 😉
There are some reasons why a celiac may feel up and down and all around. I had to root out other food intolerances myself
to aid in my recovery.
Melinda Dennis is fellow celiac and a registered dietitian in Boston. Her book, Real Life With Celiac Disease (which I think every single celiac –and their family members should read) includes discussions about why (even after going gluten free) some of us may still not feel well.
–Hidden sources of gluten.:cross-contamination, dining out/travel, label reading skills, lipstick, sharing butter and peanut butter, etc. with house mates.. Source your alternative flours and make sure they are labeled GF. Check meds and supplements.
–Another problem may be other food intolerances that can produce symptoms similar to those we have with gluten intolerance. Many celiacs list things like : corn, lactose, sulphites, vinegar, sodas, nitrates, nitrites, dried fruit, coffee, preservatives, alcohol, sugar, eggs, BHA/BHT, citrus, soy beans, and yeast. as culprits. (I personally have trouble with eggs, and I have a histamine intolerance, a soy intolerance and chemicals/MSG intolerance) This does NOT mean gluten is in these foods!!! It just means some of us may have trouble with these food proteins.
To figure this out, you have do an elimination diet. After removing the offending foods for a few weeks, you reintroduce one new food every week. It’s not easy to troubleshoot because you may not feel the effects of a problem food until days after ingesting it.
***Please note that contrary to what some labs/websites tell you, THERE IS NO VALID TEST FOR “IgG FOOD INTOLERANCES”
–Fructose malabsorption (there is a test for this)
–Some celiacs may have a small intestinal bacterial overgrowth (SIBO), There is a test for this, too. Ask your GI doctor to see if you may be suffering from this infection. The treatment is antibiotics.
** and this is me talking, but for the love of mike, please take PRObiotics after those things or your gut will never be the same.
I’d like to add:
–Anemia or vitamin deficiencies. Get tested. Most celiacs who still feel lousy and tired can trace the problem to iron, B-12, folate, or D deficiency. Often, this is easily supplemented and resolved.
–Thyroid insufficiency. Thyroid disease often accompanies celiac. Get tested by an endocrinologist.
And most importantly, if you are feeling so low you think you’d rather be dead (but not really) you need some support
in your life. Please, guys, find a celiac group in your area. Call the local hospital. They are usually affiliated with one.
If not, start one. You should not do this alone.
As always, offered IMHO and with best wishes to all.
Irish,
Thank you for sharing, I feel like I just read all the exact things I found I have problems with. Egg, vinegar (makes me cry the next day) literally everything you listed..Wow I am really not alone…Having a really bad day and understand completely how you finally feel that you’ve got a handle on things and “BAM” you have no clue why you feel bad…
To the sweet 17yr old….I want to cry for you! I hope that you can find some comfort in the wonderful people on this site and others who understand what your going through…It can be a very lonely process…My biggest advice is don’t give up and remind yourself every day is a new day…you will pull through. I agree, allow yourself time on just real fresh foods. It really does get better..
xoxo
According to Roger Daltrey, one + one = one 🙂
I feel really stupid asking this, but since you mentioned lactose, I’ll fire away… are more Celiacs lactose intolerant or Casein intolerant? I tried lactose free for a year but still had issues so I have since cut out all dairy. Besides elimination, is there a test for casein?
I feel much better but life without cheese is really no fun and cheese substitutes make me want to cry.
Thanks 🙂
Not stupid at all! I never knew there were so many layers to this beast either until I started researching. I know there is a lactose intolerance test, but no valid casein intolerance test.
If you feel so much better, maybe you are casein-intolerant.
Sorry. 🙁
But it could just be temporary! Leave it out for 3 months, try a little?
I gave up dairy for 10 months and then, was able to eat some dairy. Now, I can eat cheese, ice cream and use butter, but I would never try downing a big ole glass of milk. I thought losing cheese was worse than losing gluten. (and the cheese substitutes really do make people cry. It made me wanna hurl. They taste like blech) lol
I could not eat eggs for years.Terrible nausea. I tried (one more time) scrambled with water yesterday and no nausea. I could not have citrus or coffee or corn for 2 years and now, I have no issues with them at all.
None.
Gut healing can give us back some foods we thought we lost for good.
Never say die. 🙂 Hope you feel better and better as you continue to heal!
I am celiac and casein intolerant. However, before I went off of gluten and for about a year afterwards I was also lactose intolerant. Most celiac’s are at least until their gut heals, and the ends of the villi that are destroyed by celiac are the places that deal with lactose. After they grow back many celiacs can enjoy milk. How do I know the difference? With lactose intolerance the affect was immediate – just an unwell digestive system and always felt as if my stomach was ‘sour’ (which is weird because of course it is sour – it secretes a ton of digestive acid) With casein it’s more like some of my celiac symptoms – sore and achy joints.
I really needed to read this today because I was beginning to think I am a total and complete weirdo. I have not felt well for about two weeks, I just feel “off” for lack of a better explanation. In some ways it is good to know this is “normal,” but at the same time it is annoying/aggravating/upsetting to know this is in fact “normal.”
It does make me thankful we have this wonderful community of support, I truly appreciate all of you and your wonderful advice!
For those of you who feel like you are alone and isolated, you are not alone! I will support you in any way I can. I have found the best think I can do is educate people and share my journey with them. I don’t care if they get tired of hearing about it, I will keep talking until they start listening!
That’s the spirit!!
I know this sounds weird, but I love reading that other people just feel “off” I have such a hard time explaining that to my husband. He always says, what did you eat??? Most of the time I can’t think of anything I ate wrong, I just go through times when I feel “off” I am so glad I read this today. I really needed it.
To the 17 yr old, please hang in there. It is very hard, especially when you try so hard to be careful and you get glutened anyway. I’ve been gf for about 8 months now, and it’s still difficult. I have learned that taking Pepto Bismol helps, and drinking hot tea helps my tummy a little.
It is a lonely thing to handle, and it’s hard to go to social events when everyone is eating things that you can’t. I feel very high maintenance, especially when my husband complains that we can’t ever seem to eat out without me ending up sick. But you have to think about your health, and how much better you will be without the gluten. And how much healthier you will be than the folks who will be mean and not understand. See if there are any groups you can join, on Facebook or in person, because it does help to know there are others going through the same trials. And don’t be afraid to vent and let it out, we understand.
To the 17 year old – I have not been diagnosed with Celiac Disease, but stopped eating gluten because I had so many digestive issues. I feel like a completely different person when I’m not eating gluten. I ordered in a restaurant about a month ago – a hamburg with crabmeat on it, minus the bun. Well, the crabmeat must have had bread in it because I became so ill I wanted to die. I suffered for three weeks, and I’ll be honest with you, I finally figured out that it’s just not worth it. There are so many good and tasty foods that you can eat, and when I feel like I need a snack that is crunchy and satisfying, I eat 40% lower fat Utz Potato Chips. I know chips are not good for you, but having to cut out every single snack that I used to enjoy, I just need something that will satisfy that craving, and then I can go back to eating healthy. I know it feels like everything gets taken away, but feeling good is awesome. I wish that when I was younger that someone – anyone – would have told me to eliminate gluten – I would have saved myself a lot of pain and suffering. Just try to do it and see how happy you are when you feel good. It’s worth it!
Amen, Amen, Amen….and btw the Utz Kettle Chips are my go to..I just can’t have them to often (I can’t handle the startch)…
All imitation crab has wheat in it.
Wow … again you nail it. ha ha I was just thinking of writing up a post on this very thing … but honestly I don’t have the energy ha. I will though I mean it is so frustrating because the world thinks that if you “watch what you eat” and “are doing things properly” you should just “feel better” and yes a lot of the time we do. BUT I am also in a bit of a slump right now, feeling like crap – and all that comes with it – the mental fatigue and feeling like you are losing it – the depression that others just don’t get it, or at this point just do not care anymore ~ because I am sure they get tired of us way more quickly with all that is being said these days.
You know the one huge huge difference now? The one factor that at least I can hold on to a bit and ride through this recent “dip” in how I am feeling mentally and physically …
.. that I know WHY now. That at least I know why and what is the cause of the roller coaster ride I sometimes feel like I am on, I understand what and how food is the everything to our bodies – and that sometimes yep sometimes because of having this disease things are just going to be crappy, but I have hope now that eventually it will even out and I will feel better and stronger again.
I also want to thank you Gluten Dude – you have an amazing community here and you yourself rock ~ thank you thank you for keeping it real.
Hugs
I LOVE virtual hugs…thanks.
It’s comments like these that make me worry as a mother. I have a young child who is celiac – found out before she was two after “failure to thrive” and so bloated she looked like a child from a third world country – because she was truly that malnurished. I worry about those teenage years – but then – she is lucky enough to not really know any different. She is in 1st grade and knows what questions to ask of the mom’s (even if I already went over everything), when she goes out to eat (again… always with an adult who double checks everything), etc. She is interested in my GF baking – although she would rather just be around to lick the frosting beaters. So, even though I know she “get’s it”, I worry about her having that feeling of being “all alone”. However – every day it gets better. As the other commenters said – find a good support group. If you go to college – find if there is a GF club. Iowa State started ones with 2 athletes that were celiac and opened it up to not only GF sensitive, intolerant and celiacs – BUT their friends – so that the non-GF friends were educated, learned what they should bring for parties and be SUPPORTIVE!!! It has been a huge success.
I don’t understand the lack of support from home – but you are able to do this. And you will feel better. Don’t cheat, because it can set you back for months. And the longer you stay GF, the more violent your reaction can be when your body sees it again. If your supermarket has a health store, organic section, etc – or even a dietitian – ask them for advice. I know our store’s dietitian knows which GF stuff is good and what to not waste your money on. There is a huge community of people that “get it”, understand your frustrations, etc. It is going to get better. And there are LOTS of qualified and dedicated researchers out there trying to find solutions, “cures”, etc. As my physician grandfather said, “well, if [your daughter] was going to get any disease, at least it is one that is cured by diet and not surgeries or medication for life.” Amen.
Gluten Dude- I am GRATEFUL daily that I found your blog. Here in Denver, being gluten free is easier than in most places, but still…every day is a HUGE challenge.
Irish Heart- You have NO idea how much all your information has helped me!! Keep it coming PLEASE!!
To the sweet 17 year old.. I feel your pain so much that I am crying for you. Two of my three kids, were diagnosed with Celiac at 5 and 7 years old, and the last three years since “D-Day” have been a roller coaster. Some days are a breeze. Then, there’s other days…like when everyone in class is eating a cupcake and nobody warned me there was an occasion that day, and my child comes home sad that she sat there with nothing, while every other kid enjoyed their cupcakes….my HEART BREAKS OVER AND OVER. And as many times as I tell myself “Its ONLY food”…I still struggle. Now I think that I am their “source” and my negative blood test a few years ago was a false negative due to the fact that they just figured out that I have IgA deficiency…so my endoscopy is Monday. And I’m praying I’m positive so I can join my kids in their journey (even though our house is already GF). But I have textbook symptoms, so a positive results would be a blessing. We also keep a kosher home, so that adds to the challenges and limitations on my kids. But I feel like it gives them such a sense of discipline and perspective. Going to donate and do charity in a kids’ cancer ward helps with perspective 🙂
As we become educators and vocal advocates to our families, the communities we live in, and the medical community as a whole, we will help the next person be diagnosed. Please stay strong and know you are NOT alone. You will get through this and come out stronger. Please reach out to any of us for help anytime.
Your kids will continue to get their strength from you.
Good luck with your diagnosis.
To the 17 yr old. If your a cookie freak like I am, your going to have to make a batch or two of GF cookies and keep them in the freezer. That’s what I do. So if you HAVE to have a cookie, its there. And mentally, you know its there and safe for you to eat. I have found wonderful recipes (I hated to bake but getting used to it). I have also found that just knowing my cookies are there, I don’t have as many until that time of month, then i’m good to go.
Also, look for a bakery that makes GF items. We are lucky here in the Appleton, WI area. We have a dedicated GF bakery that I go to all the time(I know I shouldn’t, but they bake wonderful things) its wonderful when Celiac’s bake for me, that’s my motto. I only am Gluten Intolerant (test said not Celiac) but I have many of the same symtoms when glutened and hate it.
If you like peanut butter cookies, I have a very easy recipe for you and they are best right out of the freezer. Good luck and find others w/food intolerances. You’ll feel better the longer you watch what you eat. I have been eating this way for just over a year now and so many of my health problems have disappeared. Keep your head up dear, you will feel better, just keep at it and have your food ready for you to grab at anytime. FYI, the GoPicnic meals are wonderful when you have to grab something on the way out the door. (They look like lunchables) but read the labels on Everything. ((Hugs))
I want that peanut butter cookie recipe!
To the 17 year old. Just know that gluten-free is hard for everyone, especially at first, but it does get easier. I think that what is making it harder is that you are not getting any support at home. My daughter was 14 when diagnosed and it was hard for her, even with a supportive family and a mom with celiac. So I can’t imagine your situation. But you did the right thing by contacting the Dude and other celiacs. Even if people say they understand, the people who are living it really know.
I became a dietitian after my diagnosis and help lots of people. There was no support group in my area so I started one. After two years of meeting I had a mini melt down talking about something at the last meeting. I was around people who understand and some stuff just came out (I have been celiac for 18 years). Find some people online, in person, whatever. Your family doesn’t get it and you can’t change other people. Some day you will be supportive to others, maybe one of your children will have celiac and you will be the best dad ever! I post easy recipes on glutenfreepoodlehome.com and use ingredients from Aldis and Walmart because we don’t have specialty foods in my area. Please stop by and say hi! P.S. We all care. You can choose your friends but not your family!
Dear Celiac Teen,
We get it. We love you.
It wasn’t easy for any of us, and feeling like you want to die and that food is so emotional is common. I went to weekly therapy for a year with someone who also treats eating disorders so that I could break the negative habit of ‘needing’ foods to overcome sadness.
I’ve felt lonely, isolated, and even hurt myself a few times. Think about this: eating gluten is like cutting. We want you to heal, not hurt, yourself.
We want you to heal so that you can be a thriving member of our community working for regulation, disability rights, and understanding. We owe a lot of recent progress in case law to university students, actually! Check out those campuses so that you have something to look forward to in a few months. I hope you find a local community and a place at the table soon.
Suz
Its really a vicious cycle. I just had lab work and found out that my ttg levels are normal, but that my ferritin levels dipped again and that my TSH made a huge spike. I eat very little and am slugglish. If my thyroid is out of whack, there is another disease to add to the pot. Oh well.
I had another thought for the celiac teenager! Check out this blog!
hugs, Irish
http://www.celiacteen.com/
To the 17yo, You can come live with me! 🙂
Seriously, I’ve been dealing with this since our now 21yo daughter was diagnosed (or rather mid-diagnosed, but that’s another story) at 2 1/2. Things are much easier now. There are GF foods everywhere! I don’t trust many restaurants though, because of cross contamination issues. It took our little girl 9 months to be able to eat dairy again, so expect a long healing process. Your body may have been reacting to gluten for years before you noticed symptoms. The advice from above about eating healthily is good. It will help you heal from past damage. And definitely take portable foods with you so you aren’t tempted to cheat for convenience. It’s better if you change your mindset to “I am choosing to eat for my health” than “I can’t have gluten so I’m doomed”.
You’ll have to learn to read labels, which will actually make you more aware of all the crap food companies try to feed us.
What kinds of lunch options do you have at school? I can see that as being an even bigger problem that buying/cooking your own food at home. The lunchroom ladies at our school tried to accommodate my daughter’s food needs, but they really didn’t know what to do sometimes. They were good about cooking her a chicken breast when there was gluten in the main dish, but they didn’t know how to replace all the bread they served. They would give her an enormous amount of tortilla chips or fries to make up for it. I took Tinkyada pasta already split into serving sizes so they could make that for her on days they had spaghetti. You have a diagnosis, so according to the ADA the school has to provide an alternative for you. You may need to ask them what procedures to follow to provide proof. We had to renew it every year (Pretty dumb, but didn’t take much work.) Maybe you are lucky enough to have a salad bar or deli bar. You can make some pretty decent meals with either of those.
At this point I know you are angry at this diagnosis. Our daughter still gets mad about it sometimes. lol My advice, have a rant and move on. I’m sorry your family is not being more supportive. Maybe they’ll come around at some point and maybe they won’t, but you have to make sure you take care of yourself and not worry about what others think. I’ve been gf for 14 years and it’s pretty easy for me, as an adult, because I look around at all the people with health problems related to food consumption and I’m relieved that I found out how much better I could feel ‘simply’ by removing gluten from my diet.
Just remember you have a lot of people (who don’t even know you) pulling for you in this new world of living a gluten free life. 😉
GD-
Great post. To the 17 y.o. I wish you luck, love and to someday be at peace with this sucky disease. Your body is precious, it’s the only one your going to get so treat it as well as possible. Talk to your parents/family and designate “your area”-in the cabinet, in the fridge, cutting board, utensils, etc. Seems like a pain in the ass now but you are going to have to learn how to cook for yourself. Go to celiac teen and go online to FB, twitter, wherever and get yourself some support.
xo-
Jersey Girl
Thanks JG.
I was diagnosed 4 years ago after years of stumbling around with the medical community trying to figure it out. If I can offer you a few words of advice, here they are:
Snap out of it. Seriously, there are people with worse things than you (and me) who cope every single day. Celiacs is completely controllable with diet. If I had to hand pick a disease to have, this would be it.
If you slip off a strict GF diet or you eat food with gluten by accident, who’s to blame besides you?
Grow up, get over it and move forward. Besides your diet, you need to change your crybaby attitude and accept the hand you’ve been dealt.
Instead of asking, “why me” ask yourself “why not me.” Seriously, what makes you so special that you can’t get a disease?
My words of support are simple, and it’s what I tell myself every day. I will not let this disease win. I didn’t ask for it, but I have it. Whether it was God’s plan or some random act of the universe, I have it. It’s how I deal with it that will define my character.
If those are your words of support, I’d hate to see what you say when you’re not supportive 😉
Tough love, my friend. This disease is not that hard to live with. Talk with somebody with cancer and tell them all you need to do is eliminate gluten from your diet and all is well. That’ll change your outlook.
I totally get it and I say that A LOT throughout my blog.
But the fact is for most of us, it’s not as simple as giving up gluten and we feel great, as you can tell by the responses here. It’s a lifelong condition where many of us simply feel like crap for a certain part of the day/week/month.
And that’s one of the reasons I advocate so darn hard. While it may not be as bad as lots of other diseases, because it’s treated by food, everyone thinks it’s an easy disease. And that’s just not the case.
I’d never want to minimize how a person physically feels, but the key is to adapt a new outlook. This is a disease that can be controlled fairly easily. I travel (just got back from Europe) work out, and live a full life, I don’t give my Celiacs a second thought. I control what I eat and the rest falls into place.
Consider yourself blessed Rick. It’s not the case for many of us.
On some level, I agree with you, Rick. But you might have stated it a little less harsh. Come on! this kiddo is 17 with no parental support. That is just wrong. If I could taker her in and help her heal, I’d do it in a minute.
We do have to learn to adapt and stop saying “why me?” (because as I have said, why not me? I ‘m not that special and I have not been personally selected to be eff-ed over by the heavens. It just IS what it is!) But she is still adjusting to the diagnosis. Give her break!
Some of us have to be very very patient with the long road to healing. Not everyone heals up and goes on to travel and be “okay”. And
you are right about getting over it, but it’s still new to this child (yes, 17 is a child) and your tough love approach is not what she needs right now.
And before you question ” oh, what do you know?” I taught kids for over 22 years. I think I know a bit about how to talk to them.
Good for you that you are adjusted and well. But this kiddo needs some support right now, not platitudes.
Wow Rick that was harsh. Are you maybe the 17 year olds Dad? Seriously, as a dietitian I treated a girl with a severe eating disorder who was diagnosed celiac, no family support or education and shipped off to college three months after her diagnosis She was binging on gluten foods and ended up with having part of her intestines removed. This is a tough time for the kid.
Rick, there are a few things to keep in mind when discussing celiac disease. Some people who have celiac disease suffer emotionally due to the inflammation and malabsorption in their bodies. They won’t be able to just “snap out of it.” Sometimes people have to heal physically before they can actually feel better. And as we all know, healing from celiac disease is a long and arduous process.
It is a rather lonely disease if you don’t find an outlet. I just got diagnosed and it’s a lot to learn in a short amount of time. I do want to say that because of IrishHeart I bought the book Real Life with Celiac’s Disease and it has been so helpful.
I am active on the forum on celiac.com and it has helped tremendously too.
I just think that book is full of great info! Thanks, Jamie! xx
call on me if I can help in any way.
Kim64, to young girl….I really feel for you as there is a lot of info, good and bad, out there. This is an awesome site for you to have. You will feel better. Try to find support group or friend you can talk with. All comments on diet are good, whole foods just become natural, they really do! I don’t like to bake but I get sweet tooth, there are many delicious easy recipes for everything gluten free when you are up to it. It can be or feel very lonely. Try and try to talk with parents,ask them to read just small amount of info, leave on table, counters, etc… I did this with my 44 year old husband! Don’t be afraid, get therapy, boy it can help. Anger is part of process, this will come and go. Be good to you! Your body is telling you it needs some help, which you are doing, all takes time. I know it feels like what’s the point at times but it always gets better, and your life can be good, fun, happy, confident…..all I know is within you. One day at a time, we are here for you! Please don’t hang on and stress over things that are done, it’s over, move on. I can’t wait, if you continue to blog, to hear your feeling better and how good life can be, Kimberly Kuehl
Hello Gluten Dude,
This post really hit home for me. This past year I had been suffering from extreme fatigue which led to a lot of frustration for me. I would like to leave a message for the teenager who wrote to you: Try to stay hopeful, it takes a long time to heal when you first start eating gluten-free because you have to find the foods that work with your body and those that don’t. (This process took me more than a year). Avoiding all grains has helped me immensely. I’ve been grain-free for the last few weeks, and have been feeling lots better. I’ve discovered that many gluten-free processed foods can be contaminated with oats or other grains. Oats are not considered a “gluten” grain, but some celiacs do react to them. Don’t be too hard on yourself. You are dealing with a lot, but with time you will get better.
I was diagnosed with celiac disease almost 8 months ago, so am still healing. I ‘ve also given up all grains as well as starchy vegetables, which damaged small intestines digest poorly, leading to bacterial overgrowth that causes digestive distress. I’m trying the Specific Carbohydrate Diet, which aims to slowly starve these unfriendly bacteria. The diet, first formulated for celiacs, is difficult to follow, but after almost a month I’m feeling much better. This diet is the subject of a book, “Breaking the Vicious Cycle.” You might check into it if your symptoms don’t improve even on a strict gluten-free diet.
To the 17 year old. Do not give up baby. My heart truly aches for you. I am 37 and I was just diagnosed 4 months ago. I have been very ill for many years with lots of misdiagnosis. I do not know how long I have been celiac but I do know it’s been at least twenty years. I still feel like crap. I live in a house where I am the only gf person. I have a 15 and 17 year old and they try to not get things mixed up or cross contaminated, but I feel like a burden for putting extra stress on theirs and their dad’s lives. We did not ask for this disease, we did not ask to have to throw everything we know as normal in the trash and learn even the basics over again. We did not ask for our bodies and minds to feel as though they are no longer ours. But, with all that being said, we have been given the opportunity to teach others about something that is not very well known. I had never heard of celiac disease until I was told I had it. Those days you get the feeling of not wanting to live but not wanting to die, those days are so very common for myself. When those days come around I remind myself, my body may not feel like mine, my thoughts may not feel like mine, my brain may not be working like it should be, but baby girl, our hearts are still beating for a reason!!!! We are still in the very very early stages of trying to learn and understand what our new normal will be, and as long as our hearts are still beating we have to keep fighting. Fighting to get our bodies back, our thoughts in order, our lives on track. We have to keep fighting because there’s a reason we are still here. We have been given a miserable extremely confusing disease, but we are still alive. This means we have a purpose, we have something we are supposed to do in life. People pass on a daily basis, and we are still here. Every time we fall, we pick ourselves back up, every time we cry we wipe the tears and smile because we still have a life to live. I am sure this will get easier with time, I have found a whole new world just through Facebook of people, with this disease living their dreams. We too can do that!!!!! Do not give up hope baby, please. There is a whole world of people that want to help and support people like you and me that are new to this and feeling lost. Do not take this on by yourself. Allow these people to help, you have a purpose, and there is a reason why we got this disease and not a different one. Keep your chin up baby, life will go on and we can all get through this together.
GF Dude, thank you so much for your posts, there are many days your words describe exactly how I feel. If this 17 year old would like please feel free to give her my email or a way she can get in contact with me. Nobody should have to do this alone.
Hayley.
I’m late to the party but I *completely* understand about getting hit from nowhere. I just puked up my breakfast and I have no idea where that came from. I almost *never* vomit.
Could it be the eggs I had for breakfast? I don’t believe I’ve had a problem with them before. Could it be my morning vitamin B12 supplements? They’re marked gluten free, and I’ve used this brand for over a year. Could it be cross-contamination? I can’t rule it out, but my wife hasn’t done anything in the kitchen since the weekend and everything’s been cleaned up since then. Could it be run of the mill food poisoning or gastroenteritis? Sure, but otherwise I feel fine (which will probably change soon if it was cross-contamination).
This is maddening.
To the 17 year old: yeah, this sucks. You’re going to have to be persistent with your parents, and they may still never completely get the message. That’s fine. You have to take charge of what you eat.
I also think it’s good advice to restrict your diet pretty thoroughly while you get a feel for what your body can handle. When I first started eating gluten free I didn’t eat anything but fish, meat, vegetables and cheese (and I probably should have skipped the cheese). I did great. It was later on when I tried to add things back to my diet that I found I had other food problems.
Eggs did that to me too.
I eliminated them and felt a lot better.
Then researched and found that people with autoimmune diseases can have problems with eggs- something to do with antibacterial properties in the egg whites.
Love this Blog!!! Thank you!!
I just passed my one year anniversary of living GF
My advice to the newly diagnosed/frustrated–find other people who DO support you. Even if you can’t find a gluten-free support group per se, look for people who are health-conscious. I am an athlete, and most runners/triathletes/cross-fitters are very “in control” of their diet and don’t think twice about me bringing my own food or asking a lot of questions about what is in things. (Some of them are much more restrictive than I am, and they don’t have any medical condition). In fact, many people who do crossfit are on the Paleo diet, which ends up being gluten free. Maybe check out a crossfit gym as a place to meet people who will be eating similarly to what you eat. Also, my mom became much more willing to try gluten free cooking after I signed us both up for a gluten-free cooking class. I think she just didn’t know where/how to start. Would your mom be open to taking a class with you? just a thought. Hang in there, and it does get better.
I kinda agree. However, gluten-free-wanna-bes are more confusing and damaging to the newly diagnosed than anything else out there.
Yes, there is definitely a difference between “sorta gluten free” and truly, strictly, no-cross-contamination gluten free, and I didn’t mean to gloss over that. I am not advocating taking dietary advice from anyone except those knowledgeable about celiac. It seems, however, that this person desperately needs to find some friends who will at least be supportive of his/her dietary choices. There may not be a celiac/gluten-free support group available, so I was trying to suggest some alternatives that would be better than no support at all.
It is a crazy disease. I have the same ups and downs and everyone around me thinks I’m crazy!
I don’t have issue with the gluten free wanna be’s or those changing their diet just to feel better regardless of a diagnosis. What I don’t like is the press making it out to be a fad or something we make up, possibly for attention. We don’t judge people for being diabetic or anemic or other ailments.
The work we do as bloggers and recipe creators, etc helps everyone. Great work Gluten Dude! Keep it up!
Hi Gluten Dude,
Another great post!
To the 17 year old: You’re absolutely right! This can be a very lonely disease. Especially if you are trying to get people who don’t “get it” to understand. (Honestly, at times, it really sucks) Have a mini-pity party (that’s what I call mine) and then use your energy to educate and inspire those around you. I have used mine to teach and educate the Food Service Industry.
I have met so amazing teens at Celiac Support Groups, GFAF Expos, Boards of the Celiac Centers, via Social Media, etc… Two Teens I love follow on Twitter are Casey Cromwell @CollegeCeliacKC and Taylor Miller @GlutenAway – Very inspiring. Use your Celiac Disease as a Gift. You can help soooo many fellow teens or young people through this very difficult disease.
I still have my battles with Celiac Disease. I consider myself extremely diligent, as I am a Food Service Gluten-Free Trainer. But this disease is like Russian Roulette, it sneaks up on you when you least expect it.
I have found when people choose to go Gluten Free they do not go through the mourning process that Celiac’s do – They are happy to be Gluten Free. Granted, I am happy that I am healthy today, but I will never be “happy” I have a disease that can sneak up on me when I try so hard to be safe.
I wish you all the best!!! I look forward to hearing more about your progress. I hope to see you at a GF Expo, GIG group, Twitter, Google+, Facebook, Blog, etc… Some of my BFFs are GFFs.
Have a AWESOME day!!!!
Denise 🙂
When it comes to the brain fog, I’ve started taking Mucinex (guaifenesin). My mom read about it possibly alleviating brain fog symptoms somewhere, and it does seem lift the fog! It might be related to the mucus response of the body to being glutened. Any one else tried this remedy?
I have not, but ironically Mrs. Dude and one of the Dudettes are currently both sick as a dog and on Mucinex.
Color me confused, but isn’t brain fog caused by inflammation and autoimmunity going after nerve cells? Or was that the opiate-like molecules… not sure how Mucinex would act on either of those mechanisms, and now I’m very curious.
Also, anyone know why GIG/GFCO has lowered their standards? I’m starting to doubt that the FDA regulations are going to offer us any real life changes at all… so far, it has created MORE work for me. Eeeeeep!
Actually, there is a doctor (St. Arman) who says the use of
guaifenesin will treat fibromyalgia symptoms, but it’s controversial.
The only FM patient I know to try it says it’s malarkey and did squat for her pain levels, but others claim it has promise.
It’s a long article to read, but this guy has discussed it at length.
http://web.mit.edu/london/www/guai.html
To the 17 year old,
My eyes teared up reading your email. My 15 1/2 year old daughter was diagnosed 2 years ago and had a very rough ride. I can’t imagine what it would have been like for her without the support of her family. Yes it could be worse like mentioned in above post but honestly Celiac disease is not only hard physically but also emotionally. I find it hard as a mom having to explain to people that
“yes one little crumb is bad”
“no she won’t grow out of it”
“no she can’t just pick the croutons off”
and it goes on and on.
My daughter has learned to stand up for herself. People just don’t seem to understand and seem to think she is overly picky or too cautious. Celiac is a disease you have to learn to live with but it also is a disease where you have constantly explain and defend yourself.
Being a teen is hard – adding Celiacs can make it down right sucky. Being a teen with Celiacs and no family support is just cruel!!
It will get better. Sending you a big HUG!
On a side note. My daughter eats whole foods whenever possibly but has found that protein/meal replacement shakes with extra calories, vitamins and minerals one easy go to food that has been very handy for her. When she is on the go, or in a hurry, or out with friends they are an easy calorie filled drink. We found some that are labeled gluten free and lactose free that she really enjoys. It took a couple brands before she found a favorite. Initially when she was in a lot of pain these shakes were one of the few things her stomach didn’t object to.
Ah, this rant had me in tears (of relief!). I’m new to your blog (thank you for it!), and I’ve struggled with celiac disease (officially) since Feb. 2013. But it’s such a cyclical disease: one minute, you feel better; the next, you find out that you have other food intolerances because of your autoimmune disorder and THAT throws you off kilter. And just when your supplements start to really kick in, your fatigue swoops over like a veil and says: no way! It’s SO challenging, especially when you just want to get/stay better.
Whew. Rant over. However, your community is so supportive and your blog is a godsent. Thank you. 🙂 It’s nice to not feel so alone.
Welcome Lindsey. It’s an awesome community here.
What an awesome community! I stumbled across this page while searching for a simple description of Celiac Disease in PLAIN ENGLISH. (Who knew that would be so hard to find, huh?) I’ve been GF for 1 year now – after suffering 10 years of tests & treatments for IBS, mild colitis, bacterial overgrowth, anxiety, bile salts diarrhea, deficiencies of Vitamins D2, D3, B12, calcium, & potassium, AND hypothyroidism. None of my 12+ doctors in those 10 years ever saw the connection in all of those conditions. Not. One. Even now, my pharmacist takes me more seriously about gluten in meds than my doctor does. Even my friends tease me about my GF foods. And co-workers! They still give me food as Christmas and birthday gifts and tell me that they don’t know if it has gluten and that I can just trash it if it does. So…..um, yeah. Thanks….for the gift that you’re letting me put in the trash because you were too lazy to think of something that wasn’t food. (Thanks for letting me rant.)
So, to the 17-year-old and everyone else feeling like doctors and friends don’t take this seriously, you’re right! We know our bodies best, and we absolutely CANNOT apologize for a condition that we did not ask for. Just remember that you have a right to good health, too! And as much as we would all like eating to be optional, God did not create us that way. Food is fuel for our bodies. We just run on premium fuel. 🙂 Read as much as you can. When in doubt, Google it. Or contact the manufacturer. If they can’t give you a definite answer, assume that their product is NOT gluten free. Don’t take chances. (Not yet, anyway.) Join the Gluten Free Group on Pinterest for information and recipes. Put yourself first. When I first went GF, I was just like you. Scared to eat ANYTHING, but knowing I had to eat. Being mocked in my own home for my ‘fad’ diet. Reading food labels and still overlooking gluten in something like caramel coloring or maltodextrin. Ugh. But, really, you DO learn. And it DOES get easier to live with. As for the naysayers, let them say nay!
Welcome Susan. It’s a pretty cool community here.
Welcome Susan,
May I just point out that:
caramel coloring and maltodextrin.
are gluten free. Honest!
Read here:
http://www.delightglutenfree.com/glutenfreemyths#.Uyb0wU993vE
I have just completed 10 months gf. I am finally having some really good days. It was very hard to be diagnosed at 70, (now 71). I really felt that I would never be well but, the last 3 days are the best I have had in many years. I just started taking B-6 as well as a multi-vitamin, I do take Pro-Biotics (per advise from Irish Heart). I faithfully read everything she writes on here and .Com. I guess my question is . Should I be taking B-Complex.? I also take Omega-3.
I still have some Brain-Fog, and tiredness. Still early days I guess due to my age. Thank you Gluten Dude and Irish Heart for you research and advise.
Hi Caro7
If you start a B Complex, do not take the B6 too because then, you will have too much B6 and that can lead to painful neuropathy.
Country life GF B Complex is a good one.
“The current recommended maximum daily intake is 100 mg. High doses of vitamin B6 can, over time, be toxic, and may result in nerve damage or numbness and tingling in the extremities that may eventually be irreversible. You should discontinue use of supplemental B6 if any unusual numbness develops in the body. Too much B6 can also cause oversensitivity to sunlight, which can lead to skin rashes and numbness, as well as nausea, vomiting, abdominal pain, loss of appetite, and increased liver function test results.”
Did you have your B-12, folate and D levels tested?
Those might be worth checking–they can cause that “brain fog’.
Best wishes to you ( and I appreciate you saying that anything I may have offered was of some help. 🙂 )
When I was diagnosed the only vitamin I remember the Doc. checking was B-12, that was good at 700. I will talk to her about checking others on my next visit..Thank you for the info on B-6. I did not know about the problems it could cause if overdosed. I do take 100 mg tablet, I will take note of any changes I feel. I did check my multi. and it has 40mg, the dosage states 2 tablets are a serving but, I only take one tablet. (I don’t tolerate vitamins really well) I will have my D checked though. Thabk you for you answer. Very helpful!
Make sure she checks your calcium and runs a bone density scan on you too. You should be taking a Calcium/magnesium/D
1500/500/100 mgs every day so you do not run the risk of fractures.
We celiacs are all at risk for osteoporosis…men, too.
My stomach does not like vitamins very much either. I am
not sure what ingredient is in them, but sometimes, they make me nauseous. Taking them in a full stomach helps a bit.
If it helps to take liquid, a good liquid B complex is something like this
http://www.vitaminshoppe.com/p/vitamin-b-complex-2-fl-oz/vs-2723#.U2Usw_ldVcM
Let me know how you make out. If you PM me on c.com, I’ll see the notice. 😉
Gluten Dude, you do a great job on your blog, you really do. Your style, accessibility, wit, wisdom and knowledge are excellent.
Reading the letter from the 17 year old desperate coeliac lass that you showed I just want to add something that all your readers need to know. I am sure it has been flagged up elsewhere on your blog but I just want to say it here: ALL CEREAL GRAINS CONTAIN GLUTEN. That’s right, all of them. They cannot NOT contain gluten as they are all part of the poaciae family, a family of grasses which all contain gluten. So I don’t care how many labels and statements of ‘gluten free’ are plastered over any product, it is not possible that it is actually free of all gluten, if it is made from a grain, even corn, rice, sorghum, millet teff, spelt, emma, eindkorn or any version of oats you care to name.
Added to this, all the GRAIN-LIKE plants, such as buckwheat, quinoa, amaranth and even chia, can all lead coeliacs to react too. That is because all these seed bearing plants have evolved to protect their babies, i.e. their seeds, with biologically active agents that stop animals like us from digesting them, and damage the intestines of such animals when they do get eaten in an attempt to stop the animals eating them again as they’d have had such a tummy ache that they wouldn’t fancy trying to eat that plant again. Clever old seed plants eh? Not as stupid as they look?
All plants, in fact, have evolved mechanisms to defend themselves. With nuts it the hard shell, and once we clever humans have got through that the nut itself is rather nutritious! Roses have thorns on them as a protection, other plants make toxic alkaloids (deadly nightshade for example), or lectins (potatoes and tomatoes) and others are high in oxalic acid (spinach, rhubarb) to put off a would-be nibbler. Plants, you see, can’t run away so they have evolved all these clever mechanisms to defend themselves.
BUT – animals, virtually all animals, once killed by us are almost entirely edible!! Yipee. We can eat the muscle, the organs, the brain, the bone marrow, and in fact the evidence is that we did precisely this over our evolution and in doing so developed into the animal that we now are, i.e. the dominant biped with a large brain and many skills that we are (mostly).
So, where is all this going? It is going towards suggesting that all coeliacs out there properly embrace the PALEO diet. I.e. the diet that our ancient ancestors ate. However, beware of these paleo folks who eat a lot of fruit as, if you have coeliac you will definitely have a naff collection of gut microbes. They will be right off kilter, so eating fruit will not help. It’s just meats (all of them, and all grass/pasture reared), organ meats/offal, fish, shellfish, eggs galore, and fresh leafy vegetables. Not potatoes as they are too carby and will feed the bad, pathogenic gut microbes. On top of that you have to eat plenty of fat, i.e. animal fats, olive oil (cold pressed etc) and avocados, coconut oil (and coconut in any form), and that way you will all feel far better, far quicker than any idea your doctors may have. Don’t wait. Do it. You have everything to gain.
One last point: BONE BROTH. Making a broth with bones from grass fed animals in a big pan with fresh water, wine or cider vinegar and sea salt, boiling the lot up for at least 6 hours on and off over a few days (topping up with water, obviously, to prevent pan from boiling dry) makes the best healing food you can find. Once the bones have been removed after their boiling time the resulting soup/broth is very rich in minerals and collagen, both of which are desperately needed to mend the gut.
Good luck to you all. This is serious (as if you didn’t know).
No. Just, no.
Fighting depression and reaction AGAIN. Thought I was fairly well adjusted, after 4 years, but…yeah. I was mistaken.
One breath at a time, but even that hurts today. Having multiple autoimmune issues SUCKS today.
Hugs to all of us.
Hang in there…