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I'm A Celiac For Attention


IntensePort

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num1habsfan Rising Star

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~

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schuyler Apprentice

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

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whitball Explorer

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

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IntensePort Newbie

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.

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2Boys4Me Enthusiast
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.

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lonewolf Collaborator
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.

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2Boys4Me Enthusiast
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:

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  • 5 months later...
Fayt Newbie

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.

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Guest Norah022

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...

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tiffjake Enthusiast

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.

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  • 3 months later...
Liz92 Rookie

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:

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stef-the-kicking-cuty Enthusiast
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

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tarnalberry Community Regular
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:

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Liz92 Rookie

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:

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  • 2 weeks later...
starvedartist Newbie

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...

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    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
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