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Sick Of Being So Different


GFMochi

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Loey Rising Star

Well, there are issues.. I don't think it was malicious.. they just don't get it on so many levels. I am still trying, after three years, to cope with the fact that I have to guard my own little safe corner.. walked in to the kitchen last night as I was cooking up some burgers and picked up the spatula without checking or thinking.. had been used for their dinner and was dangerously cross contaminated. Seems like the wife got upset with me. I seem to be the one causing all the inconvenience. No wonder I still have damage consistent with celiac after two strict years of rigorously gluten free. Could very well be why I am out here during dinner while they are all having a good time around the dinner table. Oh well. Had to leave because the pasta boiling was making me feel nauseated.

I wish your family knew how much you would like to be able to eat whatever you wanted and not be worried about CC. They don't realize how lucky they are to not have to deal with the food issues that we do. Went to a funeral recently and we stayed overnight at my husband's cousin's house. He didn't quite get the restrictions but left my food alone and let me heat it myself. At the luncheon after the funeral they had a special salad for me (it was a buffet but I was prepared with more little containers).

This time of year is particularly hard on all of us. We're lucky to have our online community. We just moved to a new state and one of my husband's friends at work has IBS (he referred me to a new GI because I am NOT happy with my current one) so when I cook us all dinner next weekend (they're coming over and I plan on picking his brain) it will be gluten and acid free.

Sending healing hugs with holiday wishes,

Loey

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Gutsy Girl Rookie

Who else is sick of having to deal w celiacs? I hate having to be so careful w my food, having to make my own food to bring to parties. I hate it!! No one else in my family has this, they don't understand how bad it sucks to be so different. They keep telling me that I'm over reacting, it's not that bad to have this allergy, but they don't have it, it is not going to personally affect them! If they are hungry, they can grab anything.

I am so frustrated. I have 3 gatherings to go to next week, all surrounding food. I don't know how I am going to handle it. I was just curious how everyone else deals with it.

I'm nodding with understanding, yet chuckling too. Whenever I go ANYWHERE and need to eat, it looks like the carnival is coming to town. Wheelchair and/or crutches, cooler, water jug, utensils and plate for me myself and I, bag of pain medicines and TENS unit/pain relief devices, etc.

Talk about being "different"! Wheelchairs, crutches, and things of that nature sure add another whole dimension to that category! I feel for ya, but be grateful for what you have. *Smile, wink.*

This week I was at a party too, and my "special diet" became the topic of conversation among the people there.....AGAIN. :/ Oh well. *Shrug.* Next up....Christmas dinner with family.

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Gutsy Girl Rookie

My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

Oh, now that's no fun! Sorry!

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kareng Grand Master

I'm nodding with understanding, yet chuckling too. Whenever I go ANYWHERE and need to eat, it looks like the carnival is coming to town. Wheelchair and/or crutches, cooler, water jug, utensils and plate for me myself and I, bag of pain medicines and TENS unit/pain relief devices, etc.

Talk about being "different"! Wheelchairs, crutches, and things of that nature sure add another whole dimension to that category! I feel for ya, but be grateful for what you have. *Smile, wink.*

This week I was at a party too, and my "special diet" became the topic of conversation among the people there.....AGAIN. :/ Oh well. *Shrug.* Next up....Christmas dinner with family.

Glad you have a sense of humor about it! When my boys were little, your chair would have been the hit of the party for them! The oldest is about to go to college for mechanical engineering and the younger loves to build things, too. Because people have always been nice to show him things like thier chairs and prosthetics, he has an interest in designing and building adaptive devices.

Somwtimes, I'm eating my food and its sooo much better than the rubber chicken everyone else is eating. And they can see that! :)

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Loey Rising Star

I'm nodding with understanding, yet chuckling too. Whenever I go ANYWHERE and need to eat, it looks like the carnival is coming to town. Wheelchair and/or crutches, cooler, water jug, utensils and plate for me myself and I, bag of pain medicines and TENS unit/pain relief devices, etc.

Talk about being "different"! Wheelchairs, crutches, and things of that nature sure add another whole dimension to that category! I feel for ya, but be grateful for what you have. *Smile, wink.*

This week I was at a party too, and my "special diet" became the topic of conversation among the people there.....AGAIN. :/ Oh well. *Shrug.* Next up....Christmas dinner with family.

Just remember we're all here for you and you're never alone. Feel free to PM me anytime to vent. You've got a lot on your plate (no pun intended). If your biological family doesn't get it your adopted forum one does!!!!

Healing hugs,

Loey

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Skylark Collaborator

I wanna say it's getting easier, but it's not. I was diagnosed with celiacs in january, and in march, found out I was allergic to dairy, eggs, all citrus, all poultry, celery, strawberries and hazelnuts. This year I went to one party. I used to average about 15 a year. I've somehow grown tired of all my friends, so I barely talk to them, if at all. I've even grown tired of my boyfriend who seems to think i'm making it all up. I'm wondering if anyone else has inadvertently seperated themselves from the rest of the world. And any ideas on how to rebuild.

I went through some personality changes as I recovered and some of my friendships shifted around. I also had a broken engagement when the fellow realized how much I had changed. It turned out to be for the best. I started new hobbies and made some new friends that way. I also throw my own parties, so that I know I have something safe to eat.

To rebuild, get out of the house. Take up a sport, go to dance classes, take a painting class, volunteer for charity, whatever sounds appealing and involves a few other people you can meet.

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BethM55 Enthusiast

My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

I have no idea what to say, other than {{{hugs}}} and a belated happy birthday! I hope you treated yourself to a gluten free cake. Shame on your family for being so insensitive.

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Loey Rising Star

I went through some personality changes as I recovered and some of my friendships shifted around. I also had a broken engagement when the fellow realized how much I had changed. It turned out to be for the best. I started new hobbies and made some new friends that way. I also throw my own parties, so that I know I have something safe to eat.

To rebuild, get out of the house. Take up a sport, go to dance classes, take a painting class, volunteer for charity, whatever sounds appealing and involves a few other people you can meet.

Coincidently I have done what you suggested and started taking painting classes. I also tutor a dyslexic child for free one day a week. I'm too sick to work but for at least two days a week I feel normal.

Wishing everyone a HEALTHY and happy gluten-free holiday,

Loey biggrin.gifbiggrin.gif

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  • 3 months later...
kellynolan82 Explorer

My eyes just cannot avoid the sight of wheaten bread and cakes. They gloom at me, they stare at me, they watch me very closely, they can't wait for me to give in and have their opportunity to attack my insides. That decadent looking piece of cake; should I eat it or should I not? If I do... It will eat ME! Seriously, I can tell when foods are DEFINITELY NOT gluten free and there is always a "HATE" expression engrained on the texture of wheaten cakes and breads. It's a temptation we all need to overcome. And a self-absorption I need to avoid.

Socially, I just try not to bring up the subject if it doesn't come up. I tend to not volunteer unless I'm asked. Too many variables here and there. :rolleyes:

That being said, don't get me wrong, I'm always more than happy to talk about it ANY TIME with ANY ONE if it comes up. :D

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etta694 Explorer

I wanna say it's getting easier, but it's not. I was diagnosed with celiacs in january, and in march, found out I was allergic to dairy, eggs, all citrus, all poultry, celery, strawberries and hazelnuts. This year I went to one party. I used to average about 15 a year. I've somehow grown tired of all my friends, so I barely talk to them, if at all. I've even grown tired of my boyfriend who seems to think i'm making it all up. I'm wondering if anyone else has inadvertently seperated themselves from the rest of the world. And any ideas on how to rebuild.

I also have laid low and, I think because of recovery, have been too exhausted to invest in relationships that are wearing. It has gotten somewhat better especially as the diet kicks in. But, I hear ya....

My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

That sucks! :( Yes, and I hope you did treat yourself.. you know, that new purse.. :P

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Marilyn R Community Regular

I think depression is part of celiac disease, and with that comes self pity and fatigue and all sorts of self-defeating attitudes.

The one thing I use as a mantra is that I have a disease. A disease that is controlled by what I eat. How lucky are we that we can eat so many foods and not pay for really expensive treatments or drugs to feel better? How lucky are we that we found out before it turned into full blown MS, Lupus, or other autoimmune diseases?

It's perfectly normal to feel bad about having to cope with this disease. But we're still lucky. We found out. :D

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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.
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