Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Need A Gluten Free Friend


manderoni22

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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. 

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    2. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

    3. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    4. - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

    5. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,289
    • Most Online (within 30 mins)
      7,748

    SarahZ
    Newest Member
    SarahZ
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.