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  1. 1

    Cyndi Wicke

    So many things! I was diagnosed in my 30’s and found the exact same behaviors, judgements, and expectations. When you get angry, people tell you to lighten up, call you names, or tell you you’re blowing it out of proportion. Although those things don’t really ever go away, you will develop tools to deal with them. Every diagnosis of every life altering disease sort of forces you to go through all of the stages of grief. Celiac disease is controlled through food and our society has been programmed to believe only in diseases that have a pharmaceutical control. Knowing you will change them. My ex husband refused to bend. I had no safe place in the world, and it sounds as though you are in a similar situation right now. The things I found that make it easier – not right, and not perfect, but easier – lie. I don’t like that food translates easier than I can’t have that food. You’re dealing with ignorance, and if people refuse to be educated, don’t waste your PRECIOUS time and energy on them. You will find a close group of people who want to know and learn, and even without a disease, those are the people you want in your life anyway. I mean, think about it – what is the character of a person who would rather be unhelpful and mean to you? What, food aside, can you really ever count on that person for? If you were stranded, would they come help you, or have an excuse as to why they can’t?

    My other piece of advice – until you’re super comfortable with your situation and your health – eat whole foods: fruits, vegetables, meat. Buy your snack type packaged foods in advance and always have something available in a backpack or bag so you aren’t reading labels in front of “those people”. That is NOT a permanent solution – you don’t need to hide anything, you just have a LOT, and don’t need to constantly be bombarded with negativity. Make your own safe space. That is within your control. I now have a gluten free home, complete with gluten free pets, and now a mostly gluten free boyfriend with a sanitizing routine to keep me safe when he does eat gluten (he was there for the aftermath of me getting cross contaminated once). You will find your way, your people, your health, and your happiness. Unfortunately, that doesn’t happen in a day, and we are not on the easiest path, because we are forging it. Hopefully, you will make things easier for the next kid. You can reach out at any time. I don’t know where you are, I’m in Texas, 48 years old, female, diagnosed 14 years ago. You can find me on Facebook, or I’m happy to give you my Email address. I know there are resources out there, but if you ever need a virtual mom hug, I’m happy to help! Good luck, good thoughts, and so many good wishes for you!!! I cried when I read your post because I may as well have written it. You definitely are not alone!!!

    Reply
    1. 1.1

      Deb

      Hi, I so appreciate your input and care. I purchased the Gluten Dude Book and my daughter also read it and came on here and posted. I’m writing in response to this post as it was posted by my step-daughter. She is 1 of 5 and a twin. While her story is somewhat off from what has been going on – I think it’s important that you all know she is not stating that her sister was 3 when she was diagnosed and at that age didn’t even understand what was going on and did not offer her older sister gluten foods at all. At first Tara was sick and going back and forth between her mother and father. Her mother refused to believe Tara was sick and although dads are great – some don’t have that motherly instinct. I had a rough time getting Tara to the GI doctor because she went back and forth with her twin sister every 5 days and her mother would tell her I was wrong and that she wasn’t ill or sick and not to listen to me. Tara’s dad initially thought it was just a typical kid who has gas. I kept trying to eliminate foods from Tara’s diet in hopes of figuring out what was making her feel so much pain. My plan did not work since after the 5 days she was here – back to her mom she would go. The mom refused to remove the foods or anything I was trying to accomplish. I then gave Tara’s dad the card to a GI doctor I used for my other daughter when she was younger – this daughter is 6 months younger than Tara. Tara’s dad finally made an appointment after I finally said Tara is sick – something is wrong and this is not gas. Tara was seen by the GI doctor and blood work was done as well as an examination. The blood work came back postive for celiacs and I was stunned. I had heard back this autoimmune disease but never expected to hear Tara had it. We then changed her diet after the endoscopy as we were told. We went out and bought her – her own dishes, utiincles, bought all foods that were gluten free and cleans out cabinets in the kitchen that held all that belonged to her. To ensure she was not cross contaminated, even foods that were gluten free that we used ex. peanut butter, ketchup, syrup – we made sure she had her own and marked it GF in permanent black marker. We made sure she had her own GF toothpaste – no sharing of any foods even if gluten free and we changed where she sat at the table – giving her my seat at the head of the table so no one was on either side of her. We changed the way we went on vacation and used a trialer so food would not be an issue. We stopped going out to eat until we found restaurants we could trust. To date, there are only 2-3 places we will go as it is too risky. Sadly, Tara’s mother would not commit to this new life style and told Tara we were going too far and that having a separate sponge for her and us was true paranoia. She refused to get a dishwasher and clean up her home since in her home she allowed food to be eaten everywhere and as we all live differently – we clean up right after a meal – she left foods or dirty dishes remain for days. Tara became fearful of her mother’s response to her disease. We ran to meetings as a family to learn and her dad did a lot of reading and teaching to all of us. I have to say during that time and all the years to follow I was so impressed how all our children stood by Tara and if anything did the opposite of what she is writing. My other daughter who is 6 months younger than Tara and Tara’s twin are all in the same grade. I was concerned during lunch time that other children would cross contaminate Tara. There was throwing of food and a group of nasty girls who tossed a garbage can Tara’s way. The lunch monitors refused to move the garbage cans as they were supposed to as this was part of Tara’s 504. They would tell Tara to move it herself. We would consistenly go to the school to complain and trouble still lingered. The girls I reported are still in the school district and till this day – none of the moms will speak to me. Tara’s mother was a whole other issue and there was no resolution there and Tara feared going to stay with her. The visitation schedule was completely broken down and court intervention started. The Courts did not care about Tara’s disease. Tara’s dad fought for her in court and was found guilty and fined for parental interference. No one cared in the Courts – in the schools and it was absolutely horrible. Although Tara was finally able to remain home and no longer go back and forth to her mom’s house – they put her through hell as well as all of us – because as you write the world is filled with ignorant people. This disease is not taken seriously. Tara’s twin sister also has a medical issue but not what Tara has. It wasn’t until after Tara’s fight to stay gluten free started – did it allow her sister to be treated for her medical condition. She was put through the mill too. Both brought to court to testify in chambers – mother given the choice to let it go or have them brought to the sheriffs dept. by their father and if they didn’t get into her car on their own to be forced by hand into her car by the sheriff. The mother chose force. The force did not work and it put the shefif’s dept. in a position to man handle children. Tara could not take it and said something and they sent her to a place to be evaluated mentally. Time passed and this all stopped until one time when the mom filed in court again which turned into a trial where both twins would have to testify in court now due to their ages. Both did fine and won in court. Tara does well in school and doesn’t have a lot of friends. We live in an area where her dad grew up and has lived here since he was 9. It’s not a very diverse group of people and it’s not easy fitting in here. All our children have similar issues – but I think the 3 oldest seem to have it a bit more. Our middle daughter has a nice group of friends and my youngest is starting to run into issues and I say it’s time to move. Tara’s youngest sister was diagnosed in late June 2018 and is eating gluten free. She is having issues in school and just like Tara they do not care that she has celiacs. She is not eating gluten foods as Tara is writing. What I think is happening is the school’s negative response – is hurting her and her anxiety level is high. I believe she is overwhelmed and there could be cross contamination going on in the school which I am looking into more than you know. I also think due to medication she has to take – the issues with finding out if there is gluten in the medications is another issue since pham. companies have rights that they shouldn’t. That is a true crime in itself. I also think Tara’s younger sister has to be on a GF diet that is food that is GF naturally. Due to her age – a difficult point to get across and why I think Tara thinks her sister is eating gluten. Tara also has reaction to junk food and ignores it when told – you would think she was actually high after eating it. Her personality completely changes and I know she is not taking drugs. It happened the other night when friends were over. She ate junk food that was GF and it happens. There is no liquor in our home and the only gluten is her dad’s bagels. Tara’s younger sister has always supported Tara and if anything runs more for her than Tara’s own twin. She is very sensitive to others and prior to getting celiacs was always trying to come up with ways to not hurt Tara about all the foods she could no longer eat. It is the opposite of what Tara writes. It’s heartbreaking to even see this written and concerning. Tara’s issues seem to be coming out more. While Tara internalizes things or lashes out at those who don’t understand her disease at school – I have told her it is not her job to explain things to people who will never get it and only use it to hurt her by either passing a silly remark or Tara taking what’s going on harder than she should. I honestly feel those who care will be there for her and those who don’t won’t – so why give that much power to them. Tara has never brought up in years that anyone is passing remarks to her. Tara brings all her foods to school and outside of the house she also brings foods or eats prior to going somewhere depending on the situation. I’m not quite sure why she would be reading ingredients in front of other kids at school. The school – although by law is supposed to provide a safe GF lunch and a GF option at events that food is part of – never has – this came up again after her younger sister was diagnosed. The school still stands in the same position as it always has. This is being addressed and further investigation is being done. It is clear that so many do not understand this disease. Our youngest doesn’t bring it up at school as we learned the hard way through Tara that trying to teach your peers causes all kinds of issues. In this area I feel it’s best to enjoy time and play. Socializing should be going on and although all socializing generally includes food we have worked out all the ways to get around it because life is about living. We eat to live not live to eat. Having this disease is not easy. It is very difficult at times because so many do not understand and I think because they do not see it as serious – as they do those with a peanut issue for example – it is hurtful to Tara as well as her sister. A classroom in the elementary school is peanut free but not gluten free. Both a disability classified by the ADA yet because the attack may not occur immediately or in front of the school or person etc. it’s seen as no big deal. I watch and listen and it’s like hearing “hey you choose this diet and want to make it our problem” or “you can have a little – what’s the big deal” – when they absolutely do not have a clue. We have as a family have all be blood tested for celiacs. It appears that this is coming from Tara’s dad and although he does not have it – he must be the carrier. Tara’s twin has been checked again since Tara was diagnosed and so far doesn’t have it. Until she is gene tested she needs to be checked regularly in my opinion. Tara’s dad who does not have it – in my mind would do well giving up gluten to see if some things that are showing up – are caused by gluten exposure since he can be gluten senstive and not realize it. I myself have had major surgery on my intestines in late spring. While I have always been active and healthy – never did drugs or drank – but ate junk food – it’s beyond true that you are what you eat. I thank you all for your support toward Tara. I will be reaching out to the school and for other support for Tara. Her wishing her youngest sister to be ill according to Tara was wishing all of us ill as well as her mother. While she has 4 sisters who have truly supported her – I think she was angry that she had it and they didn’t. It doesn’t seem to matter all that has been done for her by her family. I don’t think she is able to see this because I think her younger sister getting it has brought out anger that has been manifesting in different ways. While we supported Tara – all that went on with the courts and having a mother no support her during that time has caused her pain that is understandable but unhealthy when not in perspective. I again thank you. All the best in 2019.

      Reply
      1. 1.1.1

        Donna Southerland

        Wow! Thanks for the background story! It is literally the third thing I read in this blog! You seem very understanding toward all your daughters and understand that Tara was just lashing out due to frustration and pain and what was written was not all she was trying to say. Children will keep things to themselves untill the capacity to departmentalized becomes too overwhelming then it all comes out in some kind of weird sci fi horror show!. Some day she will understand that having Celiac is not the only part of her life! I do feel that true friends will learn to understand what it means to be Celiac! Sometimes I want to just tell people I have intestinal cancer and gluten feeds the cancer! Terrible I know but hey it might get people to understand How important being gf is, untreated will and can cause cancers and colostomy bags. I get so frustrated with family members that will not take Being gf is not my choice! I will straight out give them all the BM horrors that will happen if I even touch gluten and most times I don’t make it to the bathroom! Do you have any kind of support group for your daughters? Is the lack thereof one of the reasons you want to move?

        Reply
        1. 1.1.1.1

          deb

          Thank you for your reply. I’m sorry that you do not have family that understands – I read so many posts and when it’s family members reacting in such a manner – I am beyond words. We sit and talk about gluten free weddings and have gluten free b-day parties and all the children attending don’t even know – I think if you would say that’s gluten free – they would say it tastes horrible. Parents have stopped in and we serve the gluten free cheese cake and cookie cake and everyone is beyond words with how good it tastes. Crumbs not being any issue at a party is great – no cross contamination issues. I mentioned vacations are and have been since Tara was diagnosed using a trialer and making vacations what they should be fun. No one would ever harm her or her younger sister in our home. We are truly blessed to have a wonderful group of children who don’t pass silly remarks or get annoyed that we can’t eat out just anywhere or go out to eat as often as they did prior. While I understand that this was written from her perspective what I found sad – was all the family support was not noted and what is also very important. To answer your question – moving – is due to living in an area that’s not very open or friendly. Maybe it’s just the way things are now due to modern technology. I grew up outside playing and children just outside and around – it’s not like that here or maybe times have changed. I also think due to this area being filled with those who have families going back 100 years – those who are from here don’t seem to be open and how Tara referred to the area as not very open minded. She is not being pushed aside due to having celiacs – it’s just the way it is and she is not the only one feeling this way. I truly wish we could move as there has to be a place to live that is more friendly – all our girls would like to have more friends. So she’s not alone. On the bright side the schools are highly rated and they are all getting a good education. They all have their whole life ahead of them. I try to explain to Tara – those who don’t understand – really don’t matter. Although it’s disappointing we all run into those types of people. In all areas of life things come up and we run into those who say things that throw us off – because it lacks all that we would think should be common sense. While common sense is not common – to try to explain celiacs or any other type of situation to some is what it is – a waste of time. I say take that time to enjoy and live life to its fullest. The time wasted on these people blocks one from finding others that may be right near by but you can’t see them when caught up in the toxic bs. Not worth it. There used to be a group in our county and I reached out to the woman who ran it. It doesn’t exist anymore and it took so much out of her – because all fell on her without the support of others to support her and she has a family that was losing time with her due to all she was doing to keep the group going. We found out about the group once it was already falling apart. I had suggested that both sisters start a YouTube show and see how many kids in different age groups come on to watch or comment on the topic for that webisode. Also, I tried to see if Tara wanted to go to libaries in our county and see if they would allow something like a seminar and we could have speakers and set up in groups by age. I’ve reached out on FB to see if anyone was interested in getting teens together who have celiacs as well as children that are the age of Tara’s youngest sister who has it too. I never seem to get much feedback. I’m working with the school to start to push through making them understand how important it is to have a celiac gluten free friendly school not just a peanut one. It’s a true battle and only the beginning. I feel if I give up – it will never start to make the changes necessary for all those that will enter the school district. Although our children may not benefit from it – since I am hitting walls – school is not a place children should have to worry about access to safe food – nor not be part of events that involve food. I realize the world may not be open to serving gluten free but in school it should not be an issue. I’m happy to hear all the parents who have reached out to let me know their child’s classroom is gluten free that particular year – or the school allowed the parents to come in and help train food services and these schools continue to keep things going long after their child has moved on. It paved the way for others. It will take time to break down the walls of schools but a child should be allowed an education in a place they feel safe – especially in their younger years within their own classroom. So here’s to breaking down those walls. Again, thanks to everyone. Tara’s a great girl – smart and has the potential to go far in life and she will. Regards to all.

          Reply
      2. 1.1.2

        MamaBear

        You mentioned she had a strange reaction to junk food so I just wanted to tell you about our experience. My daughter is not a celiac, I am. But she eats a very healthy diet because of our whole family being gluten free for me and also being dairy among other things free for her baby brother. Now last year we moved next door to her grandparents who like to spoil with junk food. Since we share a backyard she was having free access to Grandma and since Grandma was so excited she was feeding her a ton of candy and all sorts of yummy things. Well pretty quick I noticed my sweet, calm 4 year old was throwing daily tantrums, becoming violent. Just not herself at all! I figured it was stress from moving and having a new sibling. But no. We actually discovered it is food coloring!! We removed it and she is back to her happy self! When ever she is accidentally “colored” she will react terribly on the 3rd day so it was hard for us to catch. We do have to be careful because we have found food coloring in meat and I’ve heard certain states put them in fruit! As much as she hates not getting sprinkles or M&M’s she tells me at 5 years old! It makes her heart beat fast and she can’t breathe right and just needs to scream. She has even hurt herself and it still doesn’t stop her! But I tell her she’s lucky, unlike me and her brother she can eat any kind of *keyword* FOOD!
        Sorry for the rant, but something to look into…

        Reply
  2. 2

    Deborah Cohen

    Sweet girl. You should not carry the weight of the world on your shoulders. You are definitely not alone and your sister’s diagnosis is not your fault! My son is 11 and was diagnosed 8 months ago. There are so many challenges you are facing and I can see from learning from people like Gluten Dude and others it can be tricky as an adult, too. But, the fact that you are reaching out for help shows you are a fighter and you have the strength to create your own set of rules for how you want to live your life and what kinds of people to let in to your wonderful world of kindness and empathy. Being a teenager sucks sometimes — celiac or not. So, view this time as the time that can help define you. You are an excellent role model for your sister and while it might not seem that way now, she will come around. She will value the lessons you can share and, while she might not admit it, she will be sorry for being insensitive to you in the past. I don’t know how easy it is to plan activities with friends that don’t include food, but keeping the fun and eliminating the stressful parts might help. Bit by bit, take control of what you can. You are a warrior (and as I tell my son, a BADASS)! Wishing you the very best of everything.

    Reply
  3. 3

    Ami Frank

    I am impressed in many ways by your level of maturity in all of this… as well as your articulation and thoughtful writing. I am a mom of a celiac daughter, now 11 and has been GF for 9 years. She has a younger sister, 9, also extremely hyper and currently on a new medication for anxiety/anger issues. Although my youngest is a lot more sensitive to her older sister than what you experience at home, she doesn’t always “get it” and IF she ever does develop celiac, she will have a hard time adjusting at school. At home, we eat GF (I am not about to take the time to cook 2 different meals). But I also run a GF bakery out of my home, so in the least, my younger one knows that there are good GF options out there. However, her transition at school will be difficult… saying she can’t have that treat, or share a lunch goodie, no more Goldfish Crackers, etc.

    Being a teenager sucks. Being isolated with small minded people sucks even more. But guess what… this is a temporary problem. There is a whole big world out there. There will be many different people you meet along your journey. Find the ones that count. Find the ones that care. And show everyone else the door. You write like an incredible bright young lady. You will do well for yourself if you keep going in a positive direction, around positive people. The advice from Cyndi was sound. And know that there are a lot more of us out there all over the country (I am in Iowa). We see you. We hear you. We will be there for you. You can also contact me anytime. GD has my info. Or find me on FB. Look up gluten free bakery in Ames, Iowa and you will find me!

    Be good to your sister. Be patient. Be loving. It is hard being the younger one too… and now she has a new thing to deal with. Good luck to you all.

    Reply
  4. 4

    Terry O.

    It’s hard not having control over so many things, including your sister’s reaction to her diagnosis. Unfortunately, the only thing you can do is try to be a positive role model by living your own life the best way you can. It may take some time but hopefully your sister will end up being your ally. Until then, you need to stay healthy.

    I understand why you don’t want to associate Celiac with an allergy but the allergy comparison can sometimes help people understand. If nothing else, ask your friends if they would push peanut butter cookies on you if you had a peanut allergy that could kill you. Gluten just does it a lot more slowly and there’s no EpiPen to save the day. Also, when faced with people who press me to cheat, I explain that if I ate that I’d be curled up in ball on the bathroom floor for 3 days. Usually that’s the end of it.

    Reply
  5. 5

    Brooke MacLean

    You are so very not alone, my friend. Our family is about to turn the corner of three years since diagnosis, at which point I was 44 and two of my boys were 14 and 7, all diagnosed in one shocking month of tests and scopes plus genetic tests for everyone else in the family. Each of us has a dramatically different story to tell, but I will say that it has been the hardest on my boys to live with CD. My teenage son will vomit for five days if he’s cross-contaminated which is disgusting and miserable and horrible to always worry about, although I believe his friends have been largely supportive.

    My youngest son has a different story. He has been living with chronic abdominal pain for three years now (since diagnosis)–was tested for everything under the sun (cancer, Chron’s, etc.) before a lovely doctor at Mayo finally told him that there’s no cause and no cure for his pain and that he just needs to live with it. That message–delivered to a nine year old. He bravely pulled himself together and manages to live his life with pain every day. The point of my story is that some of his friends are the unsupportive ones who badger and verbally bully him. He finally stood up to them recently and said, “LOOK. You have NO idea what I’m feeling or going through so DON’T judge me!” He was lucky enough that they heard his point and started leaving him alone. He also managed to find another boy in his grade who suffers from food allergies and something else tragic that he’s still being tested for. They understand each other on the days that they feel miserable and they find each other online if one of them misses school.

    Can you build a new community of people who also have weird/scary food issues? My oldest son changed schools this year and his closest friends all have special food needs. It actually becomes humorous when they go out to eat (humorous because they’re not the kitchen trying to juggle it all, I suppose) because each one of them has separate food requirements.

    I suspect your sister will start feeling worse when she “cheats” as time goes on and will learn to regulate her food accordingly. When you find something new and yummy, what if you present it to her as “Hey–try this! It actually tastes great and is safe for us!” She might be more inclined to eat GF if she knows it won’t taste like cardboard. A GF diet is REALLY HARD when you’re a kid. It has been much more emotionally challenging for my boys than it has been for me.

    I’m really sorry you’re struggling. You can do this. Stay STRONG. Breathe. This entire Gluten Dude community wraps you in a gigantic hug ;-)

    Reply
  6. 6

    Vivian

    Hang in there! The fact that you have a genetic condition that you share with your sister is not your fault. Be kind to yourself (and your sister) because this adjustment is hard, and teen years are hard too even without being celiac. Always keep safe snacks in your purse or backpack, so you’re ready for what life throws at you. Your friends may never understand, but all that matters is that you take care of yourself the best you can so you feel better – which may take a while and some trial and error. Keep some of your favorite treats in the freezer for those days when you had to forgo treats when you were out. There is a lot of great gluten free food if you broaden your tastebuds beyond pizza and mac and cheese. My now grown daughter came to see being GF as a blessing in disguise because she learned to eat a lot of things she might have never tried otherwise, plus she’s become an awesome cook and many of her non-gf friends ask her for her gf recipes…

    Reply
  7. 7

    Amanda

    Hey there!! Fellow celiac here. I don’t have much in the way of advice that hasn’t already been said, lol. I just wanted to tell you to kick all the ass. My two safe spaces are Gluten Dude’s blog and Canadian Celiac Association, funny enough, I am also reading The Subtle Art of Not Giving a F#ck….great stuff. I was misdiagnosed as a kid and my bullying came in the form of anorexia and associated issues.
    As for your sister, time and patience…one day she will understand and you will be there for her. It will be hard watching the road she travels right now, but with you being there, being you, she will find the right path. LOL..I am pushing my younger sister to get checked, so I feel you on that front.
    I too have wished it on people close to me, I think we all do that at one point out of frustration. Thst is totes normal, and in no way our fault.
    You have an instant family and support system within the celiac community, keep reaching out because we will always be here for you!

    Reply
  8. 8

    Michele

    I have an 18 year old who has a heart condition in addition to his celiac disease. He is also transgender and transitioned his freshman year of high school, so this kid also knows a thing or two about being judged and bullied. He is now a senior and has learned to “do him” regardless of others’ opinions. It takes time and is not easy, but it does get better. We are pulling for you and wish you the very best.

    Reply
    1. 8.1

      Gluten Dude

      Power to your 18 year old!!!!!!!!!!

      Reply
  9. 9

    Sybil

    “Hyper” is another symptom of CD- has your younger child been tested yet? Please before you put her on meds, get her tested and then try a gf diet – it maybe all she needs. A colleague of mine is working with families of hyper, adhd, autistic kids and, in every case, removing food dyes, sugar and gluten from their diet, they have improved to near normal behavior. There is also a lot of info in medical journals. The reason? CD is a body-wide disease and when the digestive system cannot process nutrients, the brain suffers as well as growth, teeth, bones and every part of the body. There is a lot of cutting edge research going on right now – you might be able to access it . I am very impressed with all the answers on this question and can offer this one,” gluten.org” (Gluten Intolerance Group NA) has a great deal of helpful information on their website, Good Luck.

    Reply
  10. 10

    Christina

    Anon- Hang in there. You have a whole bunch of friends on here who you have never even met! We all share this dis-ease of Celiac. Your friends are seriously not cool…but, mostly because they don’t understand the disease. I would say even most Celiac’s don’t truly grasp how serious this disease is. I know you don’t want to liken it to an allergy but some people need you to dumb it down. You could always go vegan and gf and then get grief about being vegan and they won’t even notice the gf stuff. As far as your sister is concerned…she didn’t get it because you wished it on her. It runs in families. You’re blessed you found out at such an early age. I always had a “sensitive stomach” as a teen…turned in for being bulemic in college…I love food and beer just always made me throw up…yup- Diagnosis at 44! My body is shot…just trying to heal it now!

    I did like the other suggestion about label reading to bring your own stuff you know is okay. Carry a to go bag. Or just that you don’t like that particular food. There are also colleges out there too that have GF areas….research that when you get closer.

    I live in Florida…lots of gf people here. People who care about their health. Rock on! You got this!

    Reply
  11. 11

    Carolyn

    Anon, It gets better; I promise. [I just went on a vacation to Italy where it is much easier to eat a gluten-free diet.] People are idiots about gluten free. Every day at least one person offers me food I can’t eat. But it doesn’t bother me much anymore. I’m making soup to take to Christmas dinner bc there is no food there that is safe for me, except for coffee, water and potato chips. Also, if I’m going out for an event or party, I take a dish I can eat and/or I eat a meal at home before I go. It’s okay to call celiac an “allergy,” if that’s what it takes to be safe with your food. When I go out to a restaurant [I know, another big challenge] I always say, “I need to order gluten-free: for medical, not a hobby.” Also, the information to always take a snack when you leave home is really important [think apple, orange or banana, cut up carrots, raisins, nuts, peanut butter in a packet, soft corn tortillas instead of bread.] This is just a good habit that will serve you well in the future. And the advice to stick to whole foods is a smart idea too – so you don’t get caught out there reading food labels it that’s what sets off the mean girls at school. I’m old and I still have people bug me when they see me reading labels. I’ve been know to say, “Well, I can read this label, or I can wing it and we can see what happens in an hour.” That usually shuts it down. There is a local support group where I live that has a very helpful website.
    https://www.neohioceliac.com/about-us/
    High school and living with your sister won’t last forever either (thank goodness!) After that you can move out on your own and you’ll have more control over many of these issues. You are not responsible for your little sister. You can model responsible eating. Take care of yourself in the meantime. You are not alone.

    Reply
  12. 12

    sue(swuzzle)

    You are an amazing person.Even a Coeliac Superhero would find this hard( and they have a cool costume to show off their strengths.
    Yes ,in my part of the world ,we spell Celiac differently.
    I am the second in my family to be diagnosed,My father was the first,although he has now passed.Some in my family, (who have recently been diagnosed)have different reactions to mine and treat their bodies irresponsibly,because they don’t get severe symptoms.I feel for them ,because I know the power this disease has to affect the whole body,if you do not take good care of yourself.
    My grandchildren 12 and 14 are now being tested,the younger is looking more likely to have CD.I was always concerned this could happen,so tried to prepare them for life with the disease.We have used the time to have fun in the kitchen..learning to cook good meals and fun things like donuts and yummy desserts .It is my hope that finding new foods that can be made at home have added a new practical aspect to this disease.It has also helped us to grow closer,and added to our relationship.Maybe you can find some simple recipes to do .Pancakes was one of our first,who doesn’t like pancakes? or piklets(small pancakes with jam and cream)
    Some times I think of people with CD, and people without, like the blind and seeing people..because they ,JUST can’t SEE it..I know I didn’t until it happened to me.
    I truly believe there are still more in my family with it,undiagnosed,and it is my job to do my best to manage and be healthy,one day they may come to me and ask for help.Be a superhero( you may not wear a cloak,but I see your strengths .It doesn’t mean you can’t get, or feel hurt.But each day you are saving first yourself,and leading the way for others) Also be your very own best friend.how would you encourage someone in your shoes? Pat yourself on your back ! You truly ARE amazing ! Sending my love from New Zealand

    Reply
  13. 13

    Jessica

    Dear Anon,
    I know Gluten Dude doesn’t believe in prayer but I will pray for you. My daughter has celiac disease and when she went to middle school she made friends with 2 wonderful girls… One has non celiac gluten sensitivity and the other has severe peanut allergy, so when my daughter brings her own foods and checks labels they get it. And these families are so tuned into food that my daughter can safely eat at their homes! I am going to pray for some friends like that for you. Friends who get it, so that you can just relax together and be friends.

    Reply
    1. 13.1

      Gluten Dude

      I don’t believe in “relying” on prayer. But I don’t question others using prayer. Just wanted to clarify.

      Reply
  14. 14

    Gluten Dude

    You folks are awesome. Thank you!!

    Reply
  15. 15

    toni

    School is tough enough without having to deal with the “stigmatism” of being a celiac. But I do agree with the responses above–you sound smart, in touch with yourself, informed and you can ride this through. All teens feel like they have “something” whether they do or not/ admit it publically or not. This will carry through into adulthood. Adults in your life won’t understand this any better even though they say they do.
    I have a sister who has looked in grocery store for 45 minutes for GF Peanut Butter! Whatttttt?!?! My brother would like to make suggestions about what I should order in a restaurant ( after 10 years, I got this). I would like to say I have perfectly tough skin, but I don’t always have perfectly smooth veneer. Mostly, but not always.
    Find a couple friends that can be your ALLIES and hang with them. Clue them in and ask for their support, not ridicule. I got my bestie to come around. I had to be brutally honest with her, but it worked! Hang in there!

    Reply
  16. 16

    Kate

    To all commenting here, as well as Anon-
    I was diagnosed on my 30th birthday and have been Celiac and GF for 4 years. I also developed a dairy and soy allergy simultaneously. Anon, you brought tears to my eyes in the way you finished your email; it can be quite lonely being a celiacer. I, too, felt very alone at the outset and still do, at times. For example, this week I am battling fatigue, dizziness, stomach issues, rashes, migraine, and a whole host of other symptoms after spending the holidays with my in-laws who truly don’t get it (I was once asked whether or not I can eat carbs anymore) and where I was exposed to MEGA cross-contamination despite my best food prep efforts. As for your experience with your sister, I can see how you might feel guilty but it isn’t your fault. Instead, be her advocate and GF guide…when I am able to help someone else I know I’m adding to the “good karma” of making someone else feel a little less alone, which is something I wish I’d had when I went GF.

    Gluten Dude, I only recently discovered your blog and just read the years old post on Gluten Ataxia (because I spent this past Saturday night with the bed spins and it was NOT from having too much to drink haha), as well as the one related to the emotional implications of ingesting gluten (because the tears WILL NOT stop coming out of my eyes this week and it seems I have ZERO control over my emotions). I second Anon’s thanks in saying that your posts help me 1) confirm my symptoms are not crazy and 2) know that I’m not as alone as I think I am. Keep it up and thanks.

    Reply
  17. 17

    Angelica

    Dear Anon,

    The battle with cruel and narrow minded people hasn’t been won. If anything it got worse in my lifetime. There are always good people like you to carry on the battle with wit and skill.

    This isn’t what I did when I was young, but what I do now is, I try not to trigger their prejudices. I view people like this as ticking bombs and I should just be invisible to them. You’ve heard the phrase “triggered”? It’s recent and when it entered the language I loved it, it was the best description for how I felt when I was young and how I feel about people who are cruel.

    At the heart of it, such people think they can change you, they think they’re giving you advice or hints for how to become a better person. They think they need to give you a ruler to measure yourself against. But they’re just showing how ignorant they are and how oversensitive they are to trivial differences. They don’t have the diet, you do. And now your sister does too. I bet she’s feeling guilty for teasing you. Maybe that’s why she can’t embrace the diet for her own health? I don’t know, but it’s something that might happen between sisters.

    I would advise you to avoid the subject for people who’ve teased you before. If someone comes to you with a Twinki or whatever, trying to upset you, just say “Drop it, it’s old.” as neutrally as you can. An eyeroll can help. But your sister, she matters, even if she’s a pain right now. You’ll be together all your lives, hopefully.

    Start simple like “How are you feeling today?” and see if you can work in a chance to say “It’s ok, you know, you didn’t know how badly it hurt me to be Celiac. I’m so sorry y ou have it too now. I wish it hadn’t’ happened. ” See? That’s not a lie, except of omission. You might find a moment to confess to the bigger shame later, but do this by steps. First just say you wish Celiac hadn’t happened to her so she’d be perfectly healthy.

    Doing that might trigger a fight, so you might want to tell your parents what you’re planning. Some moms might even talk to her for you at first, once you decide what you want to say. Your sister is the important person to keep together with. Teasers at school are not as important as her.

    Maybe once you work this out as best you can, she won’t cheat so much, but that’s ultimately her choice and her body. I know you’re both young, but you’re not responsible for policing what she eats. You might talk to her best friend about it though, if you get along. Just say you’re worried and don’t want her to get hurt. Perfectly natural, right?

    What you wish for when you’re angry doesn’t define you. If it did, you wouldn’t care or worry about her.

    Best wishes to you, you’re going to be all right.

    Reply
  18. 18

    Vegeta

    This website is so fucking dumb. All of you idiots need to get a life.

    Reply

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