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

Can I Vent?


missnbagels

Recommended Posts

missnbagels Explorer

I 'm having one of those weeks. But seriously, i don't know anyone who has celiac. My friends try to understand but yet they still forget and eat donuts in front of me and offer me some. Im not mad at them or anything. I know i have to deal with those kinds of situations but idk .

Also my parents always make cookies and pizzas, and i get so sick to my stomach but i don't want to complain. They have to eat too.

Sorry for venting. like i said don't know anyone who'd understand


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



Celiac.com Sponsor (A8-M):



confusedks Enthusiast

Missnbagels,

I totally understand what you are going through. The other day my brother made chocolate chip cookies (with wheat flour) and I almost died...they smelled so good! But he ended up burning them, so I wasn't too jealous!

As far as friends go, it is really difficult. Last night I went to a party and they kept offering me cake and sandwiches!! They all know of my gluten issue, but they choose to ignore it. I am not saying that they need to make me gluten-free food, but don't offer me gluten food 100 times in a night.

If you ever want to talk, you can feel free to PM me.

Kassandra

Guest j_mommy

It's a bummer. Vent all you want to.

Do you still live at home???? I would have some gluten free goodies just incase so you don't feel left out when they're eating reg ones! That has saved me sometimes!

Good Luck!

missnbagels Explorer

Yeah i do live at home

I have food for me but it doesn't bother me that they have those foods, like pizzas and cookies, because i have those also. But i have problems smelling strong smelling foods like cookies browies, pizzas, etc. So when they have those foods, i can't go anywhere to get away from the smell. then i get sick to my stomach

so it's frusterating.

jnessa055 Newbie

i know how you feel girl. i dont live at home but i do live with 4 guys that are HUNGRY and they dont have celiac so they are ALWAYS eating yummy foods, cake, cookies, biscuts and gravy, breakfast burritos, etc.. it kills me! its hard bc they dont understand.. i basically drool over their food while they eat lol. i just go and grab something else that i know i can eat and pretend it tastes the same.. haha doesnt work. thats why im glad i found this forum because no one i know has celiac disease. but its ok. im just waitin for the day that every restuarant has a gluten free menu ha. one day! :rolleyes:

Fairy-Princess Newbie

Hey, I am Allie. I am new. I just want to say I know how you feel. I don't know anyone with celiac either. In the begining I stuck to the diet for several years, wouldn't even touch breads and stuff. Everyone always offers(d) me things and it was just annoying. The past 2-3 years I havent really watched what I have been eating. Which I don't reccomend. It got to me after a while, especially after seeing everyone eat whatever they want. But all in all I know how you feel. Though My friends were good with it. My one friend always made new cookies of her own for me =) my other friend would try my Gluten-free snacks with me. The Gluten-free snacks are pricey i admit, but I have things you can make from your kitchen. If anyone ever wants to talk, let me know. I'm 17, going on 18 on feb 5. Thanks for reading all that! Bye.

taylor- Rookie

hey! so growing up i never knew anyone who had celiac disease, or even a food allergy. back in the day they didn't have any kid support group events so I would go to the regular meetings with my mom. in this particular group, all the people in the group were over the age of 60 and had several other problems as a result of a late diagnosis. as i got older ROCK started to form and so i would go to some of those events when we could.

I defintely suggest looking into finding some sort of group in your area and checking it out. even if they are older than you it still helps to be able to have a meal and not worry about anything and know that there are others out there.

When I moved to tallahassee this year it was so nice, because while I do answer the same stupid questions from people and have to reject food and trips to subway, so many more people have heard of it before, and a large majority of people i have met know something about celiac, and i've met a few that have it.

but everyone on here is here for you. they are soo willing to answer any questions and listen and complain with you, so feel free to complain haha..


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



Celiac.com Sponsor (A8-M):



Daughter-of-TheLight Apprentice

WHY AREN'T THERE ANY KID SUPPORT MEETINGS IN FLORIDA!!!! Sorry, needed to get that out. There are none within a three-hour drive, and even the reg ones are far... <_< Kinda frusterating. Only a couple of my friends understand. (A couple meaning two.) I don't hardly know any adults with celiac, let alone kids! Unless you count here on the forum... Then I know a few... But none personally. I wish I did. It'd be great to know another girl or boy in Fl my age...

missnbagels Explorer

I sure know what you mean. I don't know anyone with celiac. A girl i talk to says her aunt and aunt's friend has it but i don't know them. It is definately frusterating. I went to a ROCK funderaser thing and all i saw were little kids and elderly. There were absolutely no teens. I'm like come on i can't be the only teen in MN with Celiac!!!!

taylor- Rookie
WHY AREN'T THERE ANY KID SUPPORT MEETINGS IN FLORIDA!!!! Sorry, needed to get that out. There are none within a three-hour drive, and even the reg ones are far... <_< Kinda frusterating. Only a couple of my friends understand. (A couple meaning two.) I don't hardly know any adults with celiac, let alone kids! Unless you count here on the forum... Then I know a few... But none personally. I wish I did. It'd be great to know another girl or boy in South Fl my age...

Hey! i know i went to a kids meeting or two a while ago..it was when i was in middle school..so im not sure what the age group is or if they even meet anymore, i can call my mom back home and ask her if she has heard anything about a kids group meeting. we usually had to drive around 45 minutes to get to a meeting.

Virgie Apprentice

Hi!! My daughter is 13 with Celiac and lives in Minnesota. But yeah she feels like she is the only one around here that has it too.

Virgie

I sure know what you mean. I don't know anyone with celiac. A girl i talk to says her aunt and aunt's friend has it but i don't know them. It is definately frusterating. I went to a ROCK funderaser thing and all i saw were little kids and elderly. There were absolutely no teens. I'm like come on i can't be the only teen in MN with Celiac!!!!

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,876
    • Most Online (within 30 mins)
      7,748

    pilber309
    Newest Member
    pilber309
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • 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.