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Need A Gluten Free Friend


manderoni22

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manderoni22 Newbie

Hey. I'm Mandy, and I'm almost 15. I need to share what's been bothering me with some people who might understand.

I've been gluten free all my life, I was diagnosed with Celiac when I was 22 months old. I'm the only gluten free person in my family, out of my friends, and there is only a couple of people I really know who are gluten free. It's lonely, and gotten more lonely. My family understands, especially my mom, who's always been there, but they've never really had to deal with it like I have. My friends are understanding sometimes, but other times poke fun at my food for being crumbly, looking or smelling weird, or having a weird taste. Its harsh and they don't understand that it hurts me a lot. I only have one friend who really understands, and so does her family. Its nice having that. I have a lot of problems going out to eat especially with friends because sometimes I have worries about reliability of Gluten Free menus, or cross contamination, or being judged by my friends for over exaggerating, even though I know its necessary.

Also, I started getting a lot more G/I symptoms in the past 3 years. A couple months ago I had a reaction with hives at school to an allergen that we're still currently testing for. I've been dealing with some other emotional stuff that has really increased my worries about accidental Gluten intake, and getting more hives or G/I issues. It scares me that there could be something that I don't know is hurting me, and sometimes G/I issues are unpredictable. They happen when I'm away from home without my family, and I even held up 5 church retreat buses because of G/I issues. Point, I just really feel brought down sometimes by my intolerances, physically and emotionally.

I'm sorry for the long rant! The last thing I want is to complain, but my mom suggested that I get this off of my chest to some people that might know what I'm saying. :)  I wanted to hear stories of how other people have struggled recently, or not recently. I'd love to talk to some people who know what I'm saying.


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Reba.Loves.Music Newbie

Hey! I'm Reba. I'm 20 and I understand everything!! I've been eating gluten for almost 2 years now. Just like you my mom understands the most and then probably my sister. Some of my friends are accepting and they are willing to learn and try it. Eating out is the hardest because it is impossible where I live to find a restaurant to understand our allergy.

My biggest struggle lately. Its been a month now and I helped a friend out and when they picked me I was in the car with a sheet cake, a 3 tier cake, and over 200 rolls. I always couldn't be around it and they didn't think anything of it and I was around it for 2 days and they didn't believe me it was that bad. Like I said its a month later and I'm still struggling with it because I still have a headache, I'm still getting sick, and my stomach still hurts.

I'm always willing to talk and listen. :)

soccerchic383 Newbie

Hey guys! My name is Casey and I am 17 years old and have been diagnosed with celiacs for two months now but I've been dealing with the symptoms all my life. I totally get how frustrating it is when people don't understand - even with friends who I love and trust, I hate getting the pitiful looks and, "Wow that really sucks!" after I explain my diet.

My biggest challenge right now is preparing for gluten free eating in college. Luckily mine seems to have a pretty accommodating kitchen staff but my dorm doesn't have a kitchen and I will be sharing a minifridge with my Roomate, who eats gluten, and I don't know if the contamination will affect me or not.

I'm definitely scoping for some gluten free buddies so I'd love to talk more. Hang in there :)

Reba.Loves.Music Newbie

Hey Casey! I so understand with college, and how people don't get it all. I'm always here for a new buddy too lol :),

  • 5 months later...
Nick-incollege Rookie

hey! I'm 21, and I've been gluten free for a year now, but still have trouble with it a lot. i get reactions pretty often still (somehow) so I'm still learning! I think as you get older your friends start to understand more, so i usually don't feel too weird having to be pretty particular about what I eat. but, a lot of times, even if I order a gluten free pizza or something, I still get glutened - I think a lot of restaurants suck at changing their gloves/dealing with cross contamination and stuff =\

 

I'm also looking for gluten free buddies, mostly because i still don't know a lot about the disease and why exactly I react sometimes! I don't have gi symptoms, I just get: sore throat, nausea, and wicked fatigue. which doesn't sound that bad, but sometimes I barely have enough energy to walk. which sucks, cause I like to be active/play sports and stuff haha

  • 4 months later...
BeccaMeadows Newbie

I'm 21 and was diagnosed 4 years ago.  It definitely was a struggle at first but here's a few tips that have really helped. 

 

I found the best ways of coping with being around friends and family is being ready. 

 

It's a hassel, but preparing meals ahead of time, or having quick go to snacks ahead of time makes social situations so much easier so you never have to worry about being without food.  I also bring a lunch bag with food ready in it, or sometimes just pack some fruit and protein bars (homemade!) in my purse (having a big purse really helps).  If I know that people are going to be sitting down and having dinner (like at Christmas time) I also bring a full meal with appetizers and a dessert so I don't feel left out.  I've even talked to staff at restaurants and they've been understanding if I eat my own meal there while my friends order. 

 

I've also found that as I got older it was easier socially.  A lot of my friends just can't afford to go out to eat all the time, so instead we go to the grocery store together.  Another thing with getting older is a lot of my friends want to be more health conscious, so instead of them saying "Oh that sucks all the time", now instead I share some really cool super healthy gluten free snacks which taste great and they are really interested.  The hardest thing is explaining it to people who are new to it, but whenever people try to make a gluten free diet sound like a bad thing I usually just jokingly tell them that it doesn't bother me that I'll still have a great body when I'm 50 from eating so well.  It helps to just make light of the situation. 

 

I also tend to host most sleepovers or get togethers to make it easier for me to trust the food I'm eating and if anyone offers I tell people to bring some gluten free snacks, but to make sure they have the gluten free labelling on it.  If people insist on making food I usually ask them to run recipe ideas by me, or I usually just don't eat them because the slightest-cross contamination makes me sick.  It's also fun to have baking parties with friends.  You get to let them in to your world and make some awesome food that everyone can eat. 

 

It is unfortunate to have to deal with celiacs as a teenager when all your friends are so care-free, but honestly, especially for those who are young and new to the diet, it gets way easier socially, mentally and physically.  That's not to say you may not struggle here and there, but to me I've just embraced is as my lifestyle and it's just become second nature to me. 

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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