First…just tons of thanks for your support and kind words last week. Seriously means the world to me. I can’t say I’m not still in a bit of a dark place, but I keep looking for the light. I’ll find it.
Speaking of support, I received two heartbreaking emails over the weekend from fellow celiacs who are seriously struggling. One is a middle-schooler and the other is in college. Here are their stories. Please offer words of wisdom/support/guidance/whatever. Many thanks in advance.
Email One:
Dude response: I’m real sorry about your struggles my fellow celiac. My mom yelled at me a lot when I was your age too. So not fun. Of course, now that I’m older I realize some of her frustrations with me came from a place of love. Perhaps your mom is feeling the same way, but like my mom, doesn’t have the best way of presenting it. Perhaps you could talk to her or another family member to help calm things down a bit.
Regarding eating gluten, I know it seems like the easy way out. Please don’t do it. Don’t put anything harmful in your body. Gluten is harmful to you and it will only get worse if you continue. You deserve to feel good. As for being teased, yep…been there too. Just know that the people who are teasing you are bullies and aren’t half as strong as you are. Hold your head up and be proud of listening to your body.
Email Two:
I’m sorry if my writing is a little stilted and off at the moment; I’m going through quite the tough time with my health, and the majority of my symptoms are neurological. Just forming my thoughts and feelings into sentences is quite the struggle at the present.
I am a 21 year old student that was diagnosed with coeliac when I was 19 years old, after 2 or 3 years of what I can only describe as literal hell. My last two years at school, which were supposed to be the most important of my life, were plagued by the most traumatic symptoms of extreme fatigue (you know the kind, the kind where the word ‘tired’ doesn’t even begin to explain it. Where your very soul feels weary.), brain fog and as a result of those things, deep, deep depression. My hair was falling out. My skin was grey. My nails were brittle. I went from being a happy, intelligent, quick witted, sociable person, to being a shell of my former self. It baffles me that nobody could see that something was wrong. One of my main struggles was with socialising. I used to be able to talk to anyone about anything, but I began finding myself being lost for words, feeling unenthused and flat, feeling completely blank, having little to talk about and struggling through conversation. I was known for being a talker all throughout my life up until that point, it was a signature part of my personality, that I could talk quickly and freely and inexhaustibly. I would constantly be in trouble at school for talking during lessons! I had lost my quick wittedness and my entire personality. I didn’t know who I was anymore and thought of dying frequently.
I was finally diagnosed after years of just thinking I was deeply depressed after I was tested for anemia, and was found to have severely low levels of iron in my blood. After going gluten free and taking iron supplements I definitely felt a million times better, and for a few months felt 90% like my old self and much much happier. I was so relieved.
Fast forward a few months and I began to feel the ‘blankness’ or what I think could be described as ‘brain fog’ coming back. Of course doctors just said I was depressed. Ever since, for the past few years, I’ve been on and off anti depressants, and am more like my ill coeliac self than my former self. I get days where the act of talking, of moving my lips and making words form feels like too much of a struggle. its hard to even socialise with people that I consider close friends. I withdraw from them because I feel bad that they have to spend time with someone so utterly dull. Sometimes this ‘fogginess’ comes over me so quickly. I could go to bed feeling fine and wake up feeling like i had eaten an entire loaf of bread (when I most definitely hadn’t been anywhere near gluten). After a period of time where I also had symptoms of tingling hands and feet, I had repeat endoscopies and blood work and everything came back fine.
I used to be extremely smart, I was always top of the class and now it is a struggle just to form a grammatical sentence, let alone have any kind of analytical or creative thought. I am worried about completing my degree and I am scared that I will never be fixed and my old self again. At the moment my symptoms are particularly cruel, as I will have days, sometimes multiple in a row where I feel near enough ok, bringing me hope that I am completely better, and then the next day or sometimes all of a sudden I will descend into a deep mental fog and be incapable of simple tasks again.
I think it is possible that I was coeliac for a lot longer than when my symptoms got severe. As a baby I was frequently ill with diarrhoea, and as a child had an instinctive aversion to food made out of wheat, like pizza and donuts. Even when I was ‘happy’ and feeling healthy, I’ve always had problems with getting really breathless and faint after exercise (i thought I was just unfit but this completely lifted after dx), and being super forgetful. I worry that I was being damaged for so long that my brain has been damaged in the process, do you know if this is possible? I am aware of Gluten Ataxia and whilst it would be great to have an answer to why I feel so crappy, the thought that I might have permanent brain damage is extremely distressing. My symptoms also don’t quite match up with typical Ataxia.
I’m completely miserable and need some reassurance that it will get better. I am incredibly careful with my diet and no longer eat out. I have tried the GAPs diet to some degree of success, and basically only eat a diet of protein and vegetables. I am sick of doctors telling me I am just depressed. I don’t need them to tell me that, i know I am very depressed but no matter how much I insist that there is something underlying going on that is causing me to feel this way, all they ever do is do blood work, which always comes out clear. I know my body, and this fog and depression feels like a product of something physical rather than just psychological.
I need some reassurance from the Coeliac community that it will get better. The thought of spending the rest of my life as a lonely, depressed, stupid hermit is too much to bear. I won’t be able to hold down a job or a romantic relationship if this persists. I wonder if I have another autoimmune disorder, but my only symptoms are this persistent brain fog, depression and fatigue. If you have any tips or advice as to what might be wrong and how to fix it, please let me know. If anyone has been through this and has come out the other side I would love to hear your story – hope is what is keeping me going.
Dude response: It WILL get better. Don’t let any lazy doctor pin it on depression. I’ve heard this far too many times. Keep trying different things. It took my years to begin to heal and even then, I still struggled. And yes, seven years later, it ain’t all roses still. I’ve had lots of success with both the Whole 30 and the AIP diets. Maybe give those a shot.
I promise you. You CAN live a happy and fruitful life with celiac disease. You WILL come out of this on the other side. Many of us have and you will too.
Folks…the floor is all yours. Any support for these two would be appreciated.
Email one: I would definitely talk to your mom and find a happy ground. I caution you on eating gluten long term. It WILL catch up with you. Eventually you will feel full eating GF, once your body has healed.I am a celiac myself and have a daughter who has celiac. We’ve had to deal with bullies too. It will get better.
Email two: For 7 years I was told I was just anxious and depressed. I had so many neurological symptoms and knew I wasn’t ok. I never gave up. I kept going to doctors and I kept asking for tests. Eventually one diagnosed me with celiac. My brain fog and horrible fatigue did not stop there. My blood work always came back normal too. Then one day I went into shock from a lack of potassium. I suffer from really bad malabsorption and have to take potassium daily. Two years later I am getting myself back. I promise it will get better. Just remember it took a long time for our bodies to get bad and it’s going to take time for them to repair. Have hope!
To the college girl— I feel your pain. I lived that pain! I felt like I wrote that email that you just wrote.
I was diagnosed with celiac after months and months of pain and sickness in college. It was my sophomore year. My workload was intense. I thought the stress was getting the best of me. I couldn’t sleep, couldn’t eat, I always felt sick, and I was in such a funk. After losing about 20 pounds (as a 110 pound girl that’s A LOT), I finally took a day off college to go to the doctor. They diagnosed me with acid reflux and gave me pills. I tried the pills for 3 weeks and missed more classes than I attended. It was then where I knew I had to be referred to a specialist. They diagnosed me with celiac and it has been literal hell ever since. It has now been 4 years since I was diagnosed. Almost every day I was naseaous, tired, couldn’t think, and just felt like crap! I think my body is FINALLY starting to repair itself. Over the past few months I have been feeling better… not 100%, but A LOT better!
There is hope. It will come. Give your body the time to repair, and try your best not to stress since that does not help at all. Try taking a 20 minute walk to enliven your body. It really does help!
Stay strong and don’t give up! Things will get better!
To the 2nd email.
I had the exact same experience as you, only it lasted 5 years. It started in 10th grade. Used to be straight-As, never studied, 4.0 GPA, the works. 10th grade I got H1N1 and pneumonia, and after that nothing was the same again. I think it was the catalyst for my Celiac to start presenting. After 5 years of being told to just take birth control, seeing a shrink becaue my parents thought I was lazy, and a wrong diagnosis of adrenal insufficiency, I finally got the right news.
I was GF for my last year of college, but it takes a while for the gut to heal, so I really only felt better during my last semester. My college GPA was/is 2.8, which made getting an internship/job nearly impossible in my industry.
I had the same problems as you: hair falling out, brittle nails (a few weeks after dx, I noticed that I ACTUALLY HAD TO TRIM MY NAILS for the first time in a very long time), couldn’t sleep, couldn’t concentrate, couldn’t’ remember things (used to have a nearly photographic memory), always exhausted – no amount of sleep helped.
Anyway, long story short, I get you. I understand what has happened to you. My brain function has improved for sure being GF, but it hasn’t fully returned, and I don’t think it ever will. I’m almost 3 years post dx, and I think I’m at the point where it’s not going to get much better. It’s hard to swallow. I still have trouble remembering things and focusing. I sleep great, though! And my hair is thick again, and my nails grow quick and long. I can still get exhausted easily, but not as bad as before.
I guess what I’m trying to say is that you’re not alone. Your current “brain state” may be as good as it gets, like me. In that case, you’ll have to accept it, work around it, and eventually come to terms with it. I’m not there yet either. It’s really really hard to accept that I’ll never be as quick or smart as I was when I was younger. But, I have a good job that pays well, and I’m doing well at it. I think if you stop trying to be what you used to be, and instead accept yourself, it will help a lot. Find something that you enjoy – exercise, music, arts, gaming, room design, whatever. And remind yourself that you like it and that you’re good at it! It’s really nice to have a hobby that you’re good at. For me it’s music. I play cello and am 1st chair in a community orchestra. It feels good to be good at something without having to try harder than everyone else. I get to orchestra and play music, and I’m pretty good at it. It feels really good to hit all the notes right, get the rhythms correct and come home feeling proud of myself and happy. So, find something that does that for you. Even if it’s only once a week or less, you need something in your life that makes you proud of yourself and happy – something that you’ve always been good at and still are. It helps you to feel like your old self again 🙂
Please, if you want to talk/chat, reply here and I’ll give you my email, and we can chat 🙂
I wasn’t “diagnosed ” until age 50. I had liver damage some that I was able to reverse and some that is permanent. All from Celiac. My niece was diagnosed with MS. But as a nurse agreed to have her brain lesions biopsies. Guess what, not MS. She works in the GI Lab and one of the docs told her it’s Celiac.
She had been in a fog. It lifted with the correct diagnosis and diet.
Cross Contamination was worse for me than eating gluten. You have to really be careful.
Moms often yell when they are scared. Not our best look, but it happens.
There are lots of foods you can eat. Carbs are important for brain activity and feeling good. So I eat rice and potatoes. It fills you up and feeds your brain. I pray for you both and wish I could cook for you!
To the college student: since the symptoms come and go, it’s possible it’s food related. My celiac symptoms were much like yours (brain involvement). The other thing that causes brain fog and fatigue for me is fructose. You can either find a doctor to give you a breath test for fructose malabsorption, or you could do an elimination diet. (BTW, fructans can be a problem for people with fructose malabsorption, so you may want to eliminate both at first. Monash University’s Low FODMAP diet app is a great way to see what you can eat and how much of it is safe. They’re the ones who test foods for FODMAP content, so their lists are accurate. Sue Shepherd’s books are also good.
Increased tingling for me was due to nightshades. I was able to eat them for a couple of years after going GF, but then I had to stop. I used to eat potatoes frequently, so that wasn’t easy.
Good luck and keep trying! I know it’s hard when you feel so bad. If food elimination isn’t the answer and you can’t get a doctor to run labs or listen to you, you can always order your own online. Not ideal, but it has its place. That’s how I tracked my ferritin levels and found out I wasn’t absorbing the pills I was taking. That makes me think… Are the doctors following up on your iron levels? Serum AND ferritin? They’re supposed to do that, but many don’t think to. If they haven’t, that’s something to look into as well.
Email one: Hi, My son was diagnosed with Celiac when he was 12. He is now almost 17, a junior in high school and his life has completely changed for the better. He was upset like you are with the initial diagnosis but he has found a way to eat what he wants and feels so much better. I will give you an idea of what he eats (no haters on the less than clean teenage diet please…) He has a big bowl of lucky charms for breakfast, for lunch he brings a sandwich, bag of chips, doritos or Cheetos, some yogurt and a pear. Dinner at home is what I make for him. And after dinner he usually has another bowl of Lucky Charms and a huge bowl of vanilla ice cream with mini marshmallows, whipped cream and sprinkles. Dinner at a restaurant is off the gluten free menu or a steak (he orders the filet mignon and plays on our heartstrings that it is one of the few things he can eat. ) with baked potato and salad or a chicken caesar salad (minus the croutons and check that the dressing is GF). When he goes out with friends, 5 Guys (with no bun and they are great about allergy preparation) and their fries are GF. Taco Bell Dorito tacos, GF pizza (available at most places but be careful of the bacon toppings. That is what usually makes him sick if they don’t prepare correctly.) Ice cream, frozen yogurt and milk duds. He simply states to the waitress that he is gluten free and doesn’t make a big deal about it. There is still lots of teenage junk food that you can eat and no one needs to really know. His close friends know and are accommodating to him. If other people ask, he simply says he doesn’t like that kind of food. He doesn’t want to stand out and be “that kid.” There are times that he chooses to buy a bag of chips and a soda and have that for dinner rather than call attention to himself. Not what I would choose for him but he makes it work. He certainly isn’t deprived of most things he wants to eat. On the flip side, he has grown over a foot (after not haven grown in 3 years), put on some weight, made a few sports team and looks and feels so much healthier.
As far as your mom goes, it is tough to be the mom of a middle school kid. Teenagers are scary for us moms. We don’t know what to expect and I am sure she is doing her best. You are also more sensitive to it as an adolescent. On top of that, she is also worried about you being sick. I would try to talk to her about how you feel and see if you can work together to find more options for your food choices. She does care about how you feel. Maybe she is just as scared and stressed as you are.
Also, handing out Milk Duds in class helps you meet girls… 🙂 Good luck! It will get better.
To the college student: sitting around waiting/hoping to feel better is not very empowering. I’ve been there. My advice is to find a complementary/holistic health professional who will do extensive tests and who views all parts of the body related, unlike conventional specialists who only look at their little part. I know it’s really hard to research and find a good doctor when you have no energy but it is so important. You may not get better until you find out if you have an underlying issue. For me it was hormones. No amount of GF or any diet would have made me feel better and I was pretty much suicidal in the meantime. Best of luck!
Email 1: Talk to Mom. Middle school is such a difficult time, and to have a health issue that makes you feel different certainly doesn’t help. You are going have to start advocating for yourself, and that is never easy. Maybe you can start by educating one of your close friends about celiac. As more kids learn about it, it should become less awkward. My daughter found that several of her friends or their family member had celiac or other food related allergies/sensitivities. They started looking out for each other. Best wishes!
Email 2: Do you have low blood pressure? My daughter also suffers from it. Her cardiologist has her drink lots of water with added electrolyte tabs. She also wants her to eat salty snacks and/or add salt to her food. It has helped tremendously! She is not as tired. I have issues with low vit D levels, which caused me to be very sad. I take supplements and use “Happy Lights” as I avoid the sun for the most part (fair skin). I even have my daughter take vit D off season when she is not playing tennis. Omega 3’s are also helpful. My husband recently talked to a naturopath who rec adrenal support supplements, which has seemed to help him (under extreme stress the last couple of years!). Maybe you could try to find a nutritionist who specializes in digestive issues? God Bless and don’t stop trying,…you will overcome this! <3
What are the adrenal supps? I suspect myself of adrenal insufficiency also
Email 2: I understand all of it. I am what i call an ambivert now, a social being one moment, a hermit the next. The foginess hit’s me mid sentence , often, so I know that feeling. The fatigue, and deep depression is all too real. But here is what you are going to do about it! Mental, emotional, cognitive fatique, It is exactly what I go through, and I can tell you that you can get around it. How? Because it stacks up! Well for me, I found meetups, I laugh when I tell people – I love hosting, I hate attending them. But for me, battling that barrier against me and social/mental/body fatigue is cured by being someone people depend on, and it’s not super serious networking meetups, I am talking about social easy get togethers. The simplest momentary bit of happiness mean the world to not just you, but to everyone. When you feel so outside of every social circle, you find,just from that, that you actually share commonality with others. From there you can do so much more, lead something else (an adventure race team, a social hiking group like hiking for tacos, join an improv class, find a toastmaster group, become a ride share driver, head up a movie night, join a fun social league ). My anxiety, depression, fatigue, not including my normal digestive issues – they fall away when I have a commitment. It’s like a personal trainer of life. Listen, I am 35 now, its been over 10 years of this, and until 29, I didn’t realize how easy it would have been if I would have done those social things from the start. I still get bogged down, I still have depression days, insane fatigue at times, but I manage it because I love the little moments of awe some I find with all this. I am happy to help more if I can, cheers from a fellow celiac.
To the second writer, you’ve really captured how it feels to be just…depleted by untreated celiac. I felt like who I was was just dissolving.
I think it’s important to acknowledge that the teens and 20s are an important developmental time, and severe illness can really put a wrench in things. That happened to me too. I felt very precarious- different from my healthy peers, uncertain of my abilities and stamina, and scared for my future. I felt like I could easily lose myself. IT IS NOT YOUR FAULT. It is a factor of the disease.
Your health WILL GET BETTER. I think of celiac healing as a process of elimination. Once going gluten free, all those complications need time to heal. Don’t give up hope. If you still feel unwell, it just means there are more pieces of the puzzle to address.
The info put out by the Celiac Center at Beth Israel Deaconness was a help to me, since they talk about healing and that process of elimination.
Please get screened for nutrional deficiencies in general, and also thyroid. B12, iodine, and iron have been the biggest boost to my health, also magnesium and potassium. Without them I am dragging.
I think if you can find a good therapist to help sort through the difficulties of chronic illness, that would be good. I’m not necessarily advocating medications, since I think they can be invasive if what is really needed is physical healing. Rather I mean working through the confusion that chronic illness can bring. If I could do it over that’s what I would want most.
Email one
Hey Sweetie,
These are the toughest years you’ll have to endure. School is not just for learning English, math, etc. It’s also for learning how to cope in society, moms included. No matter how angry and frustrated you feel remember that by eating outside the GF diet you’re not hurting anybody but yourself. That’s the one thing you have complete control over. How you take care of your body and how you take care of your precious self is all up to you. Not easy, I know, but if you want to feel good it’s what you’ll have to do. No getting around it.
Good Luck!
Email two
I could have written that letter. It’s terrifying going through all of these symptoms. It sounds like you have other things going on. I know I have hormonal issues that include
low thyroid and adrenal dysfunction. They made me feel like I was dying a slow death. I was so exhausted that I couldn’t be out of bed for more than one or two hours. I went to my doctor and almost fainted in his office. I stopped talking to friends because it took too much energy to dialogue and explain myself every time I spoke to them…
My best advice is to find a functional medicine doctor. He will do the tests necessary to diagnose and best treat you as an individual.
http://www.functionalmedicine.org
This website will guide you and explain what functional medicine is and give you a list of practitioners in your area.
Good luck!
P.S. I found your letter very articulate.
To the college student: celiac hit me hard at 19. That was a long time ago. A gastroenterologist diagnosed a nervous stomach. 36 years later I got the correct diagnosis. I and the best doctors have observed that subsequent generations are getting sicker earlier. You are an astute student with a lot of motivation. Your depression, brain fog and fatigue are perhaps due to thyroid disfunction. Start reading up on thyroid and listening to podcasts by doctors, then find a good functional medicine doctor or endocrinologist. Autoimmune thyroid disease is common among celiacs, especially hypothyroidism (Hashimoto’s thyroiditis).
To the college student…
Have you tried searching on the term “super sensitive celiac”? It could be that you’re more sensitive than average to trace gluten. This search term should present you with some blogs, forums, etc. that may help you determine if this is something you should look into further. Good luck!
To the middle-schooler:
People are here for support if you need it. It is tough. That may never go away…the feelings of “not fitting in.” Even at work as adults it can be frustrating. BUT, it does get better because you get to a point where you’re okay with it because you feel better. PLEASE don’t eat gluten. I can tell you from experience from many, many, many years of knowing something was wrong and not getting a diagnosis, it’s not worth it. I have many other health problems still today that plague me after being gluten free for 12 years. It can get SO much worse if you don’t take care of yourself. PLEASE, I beg you, don’t eat gluten. Try to just talk to your mom and explain how you’re feeling and why and see if there are some solutions you can come up with. There are still many, many healthy gluten free things you can eat that are easy even to carry with you. Take care of yourself!! You only have one body and one life to live, so be kind to yourself!
To the college student:
Been there, done that. I 100% know what you’re going through. I dealt with A LOT of the those very same things when I was in college, and I didn’t get diagnosed for several years after that. I can totally relate to the frustration of it all. I would definitely agree there is a change you have another auto immune disease. Have you had your thyroid checked? Might it be Hashimoto’s? Maybe you also have other food allergies or sensitivities? Have you ever had other food allergy testing done? Is there a way to go see a naturopathic doctor that may deal with auto immune disease? It might be more helpful to you to find someone like that than a traditional doctor who isn’t sure what to do with AID folks.
Hang in there. Again, there are lots of people out there for support if you need it. Don’t think you’re alone. It can be a real struggle to get through everyday, I know, so please think about finding a practitioner who can really get to the root of what’s going on. Unfortunately many of us still struggle with being in good health long after diagnosis. I don’t want that to discourage you, but to let you know you aren’t alone. Just do your best! Remember to always take care of yourself first, so do what you need to do to get yourself better.
Boy in middle school- I feel for you it is so hard to be different in school. I have celiac and both my little boys. First thank you for wrighting because I always want to stay aware and help my boys not be pushed to eating gluten food just to fit in. I send my boys with home lunches to school but I always try to make them as good as school lunches there is a great variety of foods that are gluten free, that said please try to communicate with your mom maby she can help make your lunches better and with a little more variety. I know gluten free food is also so expensive so I often make things for my boys at home, pizza ,hamburgers ,cookies, they take fruit , yogets, string cheese ect. If your mom dosnt have time to cook maby she can provide you with ingredients and you can cook what you like.
Thank you for helping me stay aware of my boys and I truly hope you find some solid ground to stand on. You are strong and anyone making fun of you is certainly not nearly as strong as you. Please don’t eat gluten I hate to think of the damage you will have to live with later.
( cecilias gluten free grocery guid saved our sanity, it’s only on line. It has regular food that is gluten free, chips, cheese, cereal ect.)
Email one: there are TONS of foods to eat that are still GF! My son, 12 and 7th grade, can’t have dairy, soy, egg, or wheat/gluten. He devours pepperoni, safe deli meats, rice, steak (oy, the steak that boy can eat!), GF crackers and cookies, candy (ok maybe I’m not the best mom…), fruits, veggies (hahaha! AS IF!). He gets sick of reading labels sometimes, and yes, it’s HARD but it’s so worth it. I know it doesn’t matter much now when you’re so young – it seems like you’ll live forever, right? But eating GF is sort of like not smoking. Every day you stick with it, you lengthen your life. PLUS if you keep eating gluten, you’re setting yourself up for other autoimmune diseases. I have Hashimoto’s. Trust me, you don’t want to add it to your celiac. #1 thing is talk to your mom or another trusted adult. You’re not alone in this.
Email two: Given your symptoms I might do what Dude did and try the AIP diet. It sounds like you may have things going on along with celiac (SUCKS but many AI-diseases go together). If your doctor is writing you off as depressed, GET A NEW DOCTOR. Not kidding. Get your labs checked: Thyroid (levels AND antibodies!), parathyroid, blood sugar, protein, etc. I have Hashimoto’s (diagnosed after MUCH struggle with my doctor and a year of, “Huh, let’s just increase your Zoloft and see how you feel” jerk-off-ish-ness), and I can say your symptoms sound very similar to mine. The fog, fatigue, feeling listless and not yourself – being an intelligent person but feeling “dumb.” Hashis and celiac co-occur regularly. There IS hope. But seriously, if Doc is saying depression, give yourself a holiday gift of a new one!
Hey there! I have three celiac kids and I can understand not wanting to be different. My kids were 17, 15, and 12 when they were diagnosed. I would suggest learning to prepare your own gluten free food. Talk to your mom about trying out some new recipes and see if she’d be willing to buy the ingredients. When my kids started taking their new food to school, other kids wanted to try it and found out gf wasn’t so bad.
Other things you can do is learn to deflect the negative comments with humor or just laugh it off. “Yeah, I know it’s lame, but it’s this or death so…” or “Thanks, Obama!” or “Really? You’re making fun of my lunch? How’s that whole wheat school brownie?” Of course, just knowing how terrible you feel right now, should be good incentive. Never let others’ comments affect how you take care of yourself. If you are comfortable and confident, others will pick up on that.
I struggle with the “fog” so bad that I keep losing my job when they find out about it. I am now 40 and on unemployment because I also do not qualify for disability as doctors just don’t seem to understand me. I am about to start real estate school and Pursue that rather then the technical positions I previously held. My biggest fear?? Having a day that I can not read the contracts to my client or find the words Rayo explain a property to them. Let’s not forget that telephone conversations with me are nearly impossible. I understand zero of the conversation some days. I feel you and honestly feel like I am in the same boat as you symptom wise. Best wishes.
I second getting tested for food malabsorption/nutrient deficiencies and thyroid disease. You may also consider testing for myalgic encephalitis/chronic fatigue syndrome and viruses. You might also consider testing for SIBO (small intestinal bacterial overgrowth). I have CFS, adrenal fatigue, and SIBO along with celiac disease.
First Email: Let me start by adding to the din of responses by saying don’t eat gluten, you will regret it down the line. While you may say to yourself, “that’s down the line I don’t have to deal with it right now,” when you do get to that point, the road will be a lot harder and a lot more embarrassing than most anything you’ll experience in school, I promise. As for the monotony of eating GF, it can be, however, there are lots more choices out there than you know. You’ll have to learn to cook for yourself from scratch, which in and of itself can be a real challenge, however, your health is worth it, truly. There are loads of blogs and help sites that offer yummy GF recipes. Here are a couple go-to sites I use, however, there are lots and lots of them:
http://affairsofliving.com/
http://detoxinista.com/
As for the teasing, just own your GF lifestyle as though it’s the coolest thing in the world. Be confident and those around you will pick up on that and wonder what they’re missing.
Second Email: Sounds as though you have a hidden source of gluten infecting your life. That happened to me about a year ago when I found the brand I had been trusting for flour was a mistake. All my symptoms were coming back; weight gain yet not fat gain, hot flashes in one foot, stomach cramps, fatigue, attention issues, brain fog, more trips to the bathroom than I like to admit, it all came crashing back and made me feel helpless. It took time, of course, for my body to backpaddle its’ way to that point, which is why it got so far. I finally realized the problem and things slowly returned to normal. The only person who believed something was amiss was my husband, everyone else just assumed I was getting unhealthy from my love of potatoes. I tried to explain, however, they all looked at me as though I was deluding myself. I had nightmares, both waking and asleep, that I would be doomed to live like that, despite my healthy stint previously.
It is really sad that for celiacs a doctor can be a hit or miss scenario. Before I learned of my need to stop eating gluten back in 2010, the two doctors I had seen, in addition to a gastrointestinal specialist thinking I had a hernia, were ready to give me a hysterectomy–at 29. My ob-gyn was itching to give me hormones, assuring me that they would help my problem and eventually prove her right in my need for such a drastic procedure. I said no to all of it and started trying to figure everything out on my own, which I did.
I’m sure you’ve done this before, and with fatigue it can be a monumental task to ask, however, comb over everything you put on you and put in you. Keep a journal of what you eat and how it makes you feel. If you suspect anything, avoid it for a solid week and see what happens.
You will always have trying times being a celiac, but it does get better, I promise.
Hi Folks – 1st post. Love the site, Gluten Dude – exploring it.
To the middle schooler: Your mother’s afraid you’re going to die. As a mother myself, I know how cross that would (and has!) make me. Also, she has no idea where to start with your diet – gluten free processed food is expensive and difficult to find – as well as a faff to make. If she’s cooking from scratch – at all! – you’re one of the lucky ones.
I’m a bit (a lot!) older than you and these days I quite like going into restaurants and cafes demanding gluten free food, stating “I can’t eat any of that”, giving them the “victim look” and asking for a black coffee instead. I’m a bit of a rebel that way.
However, I do understand that at your age, being different is a terrible thing. It’s awful. Bullies don’t care that you’re sick, they just think you’re pathetic and act accordingly. Been there.
Time to take your power back.
Learn to cook. I know, I know – it’s hard. But start small and sneaky. Brownies are yum, aren’t they? Think you can’t eat them any more? Think again. Just did a quick search here on glutendude for gluten free brownies – couldn’t find any (which doesn’t mean they aren’t there, just that I can’t find them).
Here are 4 gluten free brownie recipes.
http://hip2save.com/2014/03/07/black-bean-brownies/ – if you can tolerate beans
http://www.deliciousobsessions.com/2015/05/death-by-chocolate-blender-brownies/ – very easy
https://elanaspantry.com/?s=brownies – actually, there’s a whole lot of them there
Pick one. I suggest the easy one first. Make one batch. Give a brownie to your mum and take the rest to school. Give them *only* to your closest friends (and one for you, of course!). Do this at least once a week. Watch as you are transformed from victim to “the brownie guy”. It’ll take a little while, obviously, but it’s worth it for your own sanity and mental health. I believe you can do this.
You are not a victim of your condition. You are an eco warrior. You don’t eat gluten, because it’s not just bad for *you*, but for *everyone* – it’s gluten for you, but for others it’s the herbicides, pesticides and/or gmos in wheat. Gluten sensitivity is on the rise *everywhere*, as is celiacs disease as well as other autoimmune conditions. When people stop eating gluten, they feel better.
Stop poisoning yourself. Transform yourself instead to someone with courage, an approach and a skill that others will admire.
After a while, you may get fed up of just cooking brownies and maybe branch out into fried mince and vegetables (use frozen, it’s easier). Takes 10 minutes to make. Or Lemon Chicken. Or one or two of the recipes on this and other gluten free and paleo sites. Avoid paleo bread – I haven’t found one yet that doesn’t squeak. Try wraps around your lunch, instead of sandwiches. Make them in batches and throw them in the freezer.
Give your mother a break – show her you’re grown up enough to take some responsibility for your own health and wellbeing – and hers!
I know this is inside you. All you have to do is let it out.
PS – girls really like a guy who can cook!
To e-mailer #1, your mom is yelling at you because she is concerned about your health. You need to suck it up and stay on the diet despite the bullying for your own sake. Don’t keep getting sicker because of other people. Don’t suffer even worse health problems because of them. One day you won’t have to deal with them anymore.
To e-mailer #2, before I diagnosed myself ( because doctors wouldn’t do it), I was so impaired mentally that I thought I was brain-damaged from either mercury poisoning from a broken light bulb or from inhaling a spray primer I used on my car. Now I am taking classes again and doing better than some of my classmates at figuring things out! Is it possible you are still getting glutened from something you don’t suspect like some “gf bread” or flour? For a long time I was also worried I would never recover mentally but I’m doing pretty well so maybe you will too.
Email one; I know this is hard and your mom is probably feeling helpless and frustrated and maybe not expressing her feelings too well. I’m not trying to make excuses but, as a mom, I can kind of get it. My daughter was diagnosed in high school and she was teased by some and supported by others. One kid threw pretzels at her. Please know these years will pass and the rest of your life has so much potential. You will write your own story and find your own success. Here’s one thing to think about; A vegetarian isn’t a vegetarian because they can’t eat meat, they are a vegetarian because they truly believe that diet is the right one for them to follow. Believe in the gluten free diet. Know that it is the one to heal and keep you healthy and if others don’t understand it, that’s their problem, not yours. Take it one day at a time. One hour at a time when the days get frustrating. Just know what’s right for you and just do it.
Email two; Get your vitamin levels checked. Don’t let the doctors tell you everything is fine. Get copies of your results and do your research. Make sure they check B12. Even a good B12 test could indicate low B12. The correct range of B12 here in the USA is between 200 and 800….excuse me? Why is that range so wide? Low B12 has been linked to brain fog. Some people don’t absorb vitamins due to Celiac damage and will need B12 injections. (I go every 2 weeks for injections) If your doctor won’t listen to you (Boy! I’ve met a few of them!) then get a new doctor. Low B12 is called Pernicious Anemia. Know your vitamin levels/numbers and research what they mean.
When I first read your email I thought; cross contamination. My daughter gets brain fog when she’s exposed to gluten. Go down the cross contaminated list; dedicated toaster, tupperware, plastic utensils, electric can openers, etc. What about spices? Drinks? Does your family/roommates understand the importance of keeping things in the kitchen gluten free? Check your shampoos, soaps, etc. Hang in there and never stop looking for answers. Sometimes we have to be investigators in our own lives. Good luck and God bless.
1: middle school can be the hardest time of life, for you and your peers. Many are treating others badly out out of meanness and many may be simply following along out of fear of getting it too. You cannot let them lead you to your own destruction, you’re too valuable. If you only have 7 meals as gf, it may be time you start learning about gf and cooking your own, my 9 yr old daughter and 10 yr old son have Celiac and they have a very broad diet, we often make enough food for dinner to pack left overs for lunches so they’re not stuck eating sandwiches all the time. Please do not poison yourself with gluten, for a celiac, it’s equivalent to eating arsenic.
2: reverse t3 thyroid disorder. Find a really good Endocrinologist who doesn’t go by ‘lab testing’ only and knows what rt3 is.
Dear email 1,
I am also in a public middle school, but it seems I am much more sensitive to wheat then you. I would not suggest eating wheat at all, you got diagnosed to help you feel better, not to cheat. I do find it difficult at times when I am upset when all my friends are eating wheat , but I cannot.
Suggestions:
Bake gluten free snacks and share them with your friends and save some for you.
If you are familiar with the brand Schar they make great gluten free foods/wafers that I love also Trader Joes.
Your mother is upset because she does not like to see you sick especially when you are controlling it.She wants to make you feel better, try to offer baking snacks or shopping you will be surprised at what you find/can make. Yes this might not be the same , but I encourage you to try.
I have been gluten free for over 3 years try to help it not ignore it.
Ceilac is an disease not something you can ignore.
I hope you find this helpful and makes you feel better.
1) Hello Middle Schooler, school is always going to be hard in one way or another. I didnt know what was going on in my body till 23, and through elementary and high school I dealt with the tummy cramps, bloating, and indigestion. I ate the same as everyone else… and I will still bullied. BUT you are LUCKY!! You know what your body doesnt like, and what will make you feel better!
And eating the same 7 things is dumb! I would go nuts!
I am not sure how old you are, but its never to early to learn to make your own meals. There are MANY books out there with information on what is safe to eat. Maybe even some easy snacks and lunches that you and your mom can put together to give you some variety! Just because you have Celiac doesnt mean you get to miss out on all the tasty foods of this world, it just means you have to adjust the recipe a little 🙂
2) Hello 21, I know what you are going through, know that you are never alone. The best piece of advice that I can give you, is to look forward. Find something that you want, 2 years, 5 years, 10 years, even 2 weeks from now. And get excited about it! Sure, right now kinda sucks. BUT next week, something fabulous could be happening! Put your energy into that and allow the light and happiness to lift you forward.
Thinking about what is happening now, will only increase your anxiety into a vortex of doom that gets harder and harder to crawl out of. WE DONT WANT THAT!
So make a plan, a goal, a date, whatever it may be, to help make you smile again. It WILL get easier!!
What does your day look like tomorrow? (This is my question to get you thinking 😉 best of luck)
Email 2: It does get better. But … if you are not better after 2 years, there is probably something else happening. Keep pushing for answers. In my case, I spent 2 years looking for the source of gluten contamination in my diet, and eventually I found the answer was another food intolerance. Soy, in my case. Yay, not only can I not eat gluten, I can’t eat the thing that often replaces gluten.
But having just said that, once I stopped eating soy, I felt better.
When I did my research, I found that around 38% of coeliacs (yes, I’m Australian) develop a second food intolerance.
I am not saying this is definitely the answer in your case, but it’s something to consider.
do you have a school nurse? she would be able to help with your research on diets and celiac issues. thanks all for the information and help from others. I am still learning about other related health issues. no wonder I’m still sick and “gluten free”
First email- I understand I got diagnosed in 6th grade so, just right before middle school. Which sucked. When I got diagnosed I just got told I have Celiac and don’t eat gluten. Well, me and my parents didn’t know what any of this really meant so, we started researching. At first it really stuck I was just like you. We only could find a couple of meals that actually tasted good. It was hard those first few years we had a lot of fight and I did break down a couple of time and eat not gf food. Which I regretted later because after just a couple of meals gf made it so my symptoms got worst when I did eat regular food. I know that it is hard with the fitting in bit but, if they are you real friend then they won’t mind. Also with my experience anyway was that my friends wanted to try my “weird” food. I am now a freshman in college and I still get symptoms because when I went gf I didn’t fully do it which in my case cause damage that is irreversible. Which is why it sometimes still gives me symptoms. Also I have found some amazing recipes and food that I really enjoy. My friends tell me it even taste like “regular” food. If you want them reply to me. Also some good brands and places to eat are traders joe (store), udis (brand-they have really good bread), chickflia (grilled nuggets), cheerios, Glutino (brand- good pretzels they even have chocolate covered ones), and Amy’s (brand- frozen pizza that I am told taste like normal flat bread pizza. I enjoy them a lot!). I hope this helps. I know it can be rough but, hold on it does get better.
In response to email two to the college student: I’m so sorry to hear how you’re feeling. It sounds a lot like what I’ve gone through as well. In case it’s helpful. I have celiac, but also hypothyroidism. The two conditions can often cause similar symptoms. They are both autoimmune diseases and so can occur together. It might be worth asking a doctor to test you for hypothyroidism (I didn’t get a chance to read through all the comments, so perhaps this has already been suggested). It’s simple blood test and is treatable. It took me years of misery to figure out that’s what my problem was. If it’s not that, please keep looking. If you are truly avoiding all gluten, it could be something else too. Lots of hugs and hope you start feeling better soon.