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

I'm A Celiac For Attention

IntensePort

Recommended Posts

num1habsfan Rising Star
num1habsfan
Posted

A lot of my family still wont believe how sensative I am to gluten, and still dont even believe I have Celiac, even tho both have been true for over 3 years already. They tend to rub it in my face, and offer me food they know I cant touch, or give me a huge lecture about something.

Wish we could all convince the whole world it exists and is real and we arent lying when we have it!

~lisa~

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

Celiac.com Sponsor (A8-M):


schuyler Apprentice
schuyler
Posted

I'm lucky that my family believes me (it took a few weeks for my dad to believe-at first he thought that I just didn't want to eat). Initially, only my mom understood how serious it was, but after a severe reaction to gluten in toothpaste at my dentist's office, they all understood!

My friends are a whole different story. They are convinced that I have an eating disorder(s). Right after I was diagnosed, my friends invited me to a small get together that they were having. I went, but since it was a last minute thing, I didn't have time to grab some of my gluten-free food. When I declined all of the food at my friend's house, they all started telling me that I just use vegetarianism and celiac as an excuse to not eat. Yea right! I was like, don't you guys remember how sick I was before and how I was eating all the time and loosing weight? They had no answer. A few friends were even with me after my first glutening after going gluten-free, and they actually had the nerve to tell me that I was faking the pains and nausea, so that so that I could vomit all of the food that I had just eaten, and no one would suspect that I had an eating disorder. So, according to my friends, I am both anorexic and bulimic! Some people are just crazy! I'd hate to see this ruin relationships, but they are just driving me crazy (everytime I have seen my friends recently, they have brought it up). I'm not giving up on it yet; I think that they just need time to come around. It's so frusterating when people don't believe you!

Danielle

whitball Explorer
whitball
Posted

I have friends, family and co-workers who think that I am a whimp. I have had "mysterious" symptoms for years. Lots of pain, lots of sick days. My friends laugh and say "oh, do you have another ailment?". Makes me mad as H---. My boss has muscular dystrophy and uses a wheelchair and is tough as nails. She does struggle every day, but it doesn't mean that I don't struggle too. So, now, I do not say a word to them about how crappy I feel. It's not worth the frustration. Tara

IntensePort Newbie
IntensePort
Posted
  • Author

Well, I'm happy to know that I'm not the only one. It doesn't get to me as much as it used to, as I'm getting more and more used to eating gluten-free.

2Boys4Me Enthusiast
2Boys4Me
Posted
My BIL is a pharmaceutical buyer for a large HMO, so he KNOWS that drugs are the best way to treat anything. He has argued with me and says that it's ridiculous to have to be that careful with any food. Last time we ate at his house (he does most of the cooking) he swore up and down that the meat patties he was making just had "ground turkey, onions, garlic, salt and pepper". I ate one and before I got up from the table had a horrible stomach ache and ended up with D for 3 days. My SIL later told me that you can't make that recipe without bread crumbs and she knows he put them in. This is the same BIL that argued with me about changing my diet to treat my horrible psoriatic arthritis. He insisted that without the medication I'd still be doing damage to my joints, that feeling better was just in my head. Ten years, 13 triathlons and 4 years of coaching basketball later he just treats me like I'm a hypochondriac, so I avoid him most of the time. And I will NEVER eat a bite of food at their house again.

Why the heck didn't your SIL tell you about the bread crumbs!? She's just as bad.

lonewolf Collaborator
lonewolf
Posted
Why the heck didn't your SIL tell you about the bread crumbs!? She's just as bad.

She's the "other" sister-in-law, not married to that BIL, and she was at work and missed the party. The SIL who's married to that BIL (this is all hubby's family) is dingy enough that she believed him when he told me he didn't put in the crumbs.

2Boys4Me Enthusiast
2Boys4Me
Posted
She's the "other" sister-in-law, not married to that BIL, and she was at work and missed the party. The SIL who's married to that BIL (this is all hubby's family) is dingy enough that she believed him when he told me he didn't put in the crumbs.

Okay then, I'll forgive her. THIS time. :ph34r:

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

Celiac.com Sponsor (A8-M):


  • 5 months later...
Fayt Newbie
Fayt
Posted

I think it's really rediculous how people think you made it up or something. Like you want to have to go through all of that pain if you get glutened. I mean you wouldn't give a person with diabetes a big pound of sugar and tell them "It won't kill you." It's rediculous with some people. Gah I'm sry but ignorant people just make me really mad.

Guest Norah022
Guest Norah022
Posted

I have a mixed reaction..Luckily for me my dad has celiac's (was diagnosed 7 years ago) so when i tested positive in may my parents and my siblings already knew what to expect.

My boyfriend who I started dating at the end of July has stomach problems as well so he can understand some of what I go through. In fact, I am home for break from school this week and got to see my boyfriend for the first time in 2 months so he planned a romantic day. He researched restaurants that had enough gluten free stuff on their menu (we went to outback) then bought mouthwash to rinse out his mouth so i wouldnt get sick from what he ate. So he is INCREDIBLY understanding.

Some of my friends at school support it, others think i have an eating disorder, and some think I exaggerate my disease and make it too big of a deal...

tiffjake Enthusiast
tiffjake
Posted

Its so funny that this thread was pinned today, b/c I recently found out that a (now ex-) friend has been talking about me behind my back and saying that I "diagnosed myself" and "googeled" everything and "made it all up with no proof" and I just can't believe it!

Yes, after my Lame Advertisement, EnteroLab, Celiac Panel, googeling, and arguing with my doc, I was diagnosed. Yes, I looked things up online. If I had not, I WOULD HAVE NEVER KNOWN WHAT TO TALK TO MY DOC ABOUT! Obviously they don't know everything (docs) or I would have been diagnosed many, many years ago.

Anyway, I no longer talk to her. Anyone who thinks I would volunteer to eat gluten-free just for kicks is down right nuts, and can bite me. No one needs friends like that.

  • 3 months later...
Liz92 Rookie
Liz92
Posted

Is there ANYONE besides myself and maby three other people that are under than 20? When I was like 12(this was like 2-3 years ago), I found out I was Celiac, not officially diagnosed, but I knew I was anyway, my brother, who IS a celiac, was telling all of his friends that I was only pretending to be Celiac for attention, When in my opinion was the worst part of being Celiac, and some of his friends had younger siblings who were my friends, so eventually one of my friends came up to me and asked me if it was true, I was really ticked off then but now I'm Happy that she asked me becuz I wuld much rather have that then her always wondering if i was an attention freak. I was diagnosed Just a little bit later. But, ya, life's just fine and DANDY!!! :rolleyes:

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted
She's the "other" sister-in-law, not married to that BIL, and she was at work and missed the party. The SIL who's married to that BIL (this is all hubby's family) is dingy enough that she believed him when he told me he didn't put in the crumbs.

I would have faked such big cramps, that I would have thrown over the table with the food and then puke all over it. I'm sorry, but I hate people like that :blink: .

I had one good friend being suspicious. She never told me to my face, that she thought I was lying, but her strange reaction gave me the feeling, that she thought, I was lying. I killed her with friendliness and invited her to a dinner at Outback Steakhouse. When we entered I emphasized the importance that I needed a glutenfree menu. Later on I asked the server, if she knew what I was talking about. She said 'yes, I would need the glutenfree menu, because I can't have gluten, because of several reasons. I'm either allergic to wheat or I'm a celiac.' When my friend heard that, she turned from pale to yellow to green to blue. No comment or stupid looks from her anymore, ever. Problem solved! :P

tarnalberry Community Regular
tarnalberry
Posted
When my friend heard that, she turned from pale to yellow to green to blue. No comment or stupid looks from her anymore, ever. Problem solved! :P

How sad is it that your friend had to hear this from some random wait-person at a restaurant that she had no knowledge of before she believed it?!?!?! :angry:

Liz92 Rookie
Liz92
Posted

ctually,now that I think about it,I seriously have no clue of what ur all talking about... The real reason II don'teat gluten is well... Iguess just for kicks..... :P

Ps, my other comment was by ma friend.... :rolleyes:

  • 2 weeks later...
starvedartist Newbie
starvedartist
Posted

well, my mom and I both have are celiacs, and some of my "friends" dont believe me b/c they dont understand...but a lot of my family members are hicks, and dont really understand it either...and I am having a really hard time w/ peer pressure...just the other day I went to a friends house, and she made a cake...and it was so tempting...I had two pieces and was sick for a week......but yeah...a lot of my family members think that it is all made up...

Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    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
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.