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popoki321

Today, I Am Angry.

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I'm sorry that someone was soooo rude to you! I guess you can never underestimate the truly ignorant! :D

At any rate, I know how you feel. You've got to be ready for the stupid people.....honestly, I take the high ground with people like that. I chose to deal with them and know that they are ignorant. I figure one day something will happen to them, and then all the instances where they were mean to others, will come to them! I know I will never see it, I won't be there, but I know it will come back to them. I guess it's kind of a karma thing! I would rather act with dignity and know that I have nothing to worry about.

Okay so that was a little preachy, bear with me.... I guess it's a turn the other cheek. That co-worker, must be really empty inside, to have no understanding of anothers pain. Just try to keep your chin up and know that you didn't deserve the mean treatment, you just got it because she saw an opportunity to unload her own ugliness.

Anyway, I hope you feel better, know that you've got alot of people who understand and are on your side.

-Lollie


tests inconclusive, diet conclusive January 2006

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Many who know me from my posts know that my husband has celiac (only 2.5 years now) but has been very ill for many years.

BEFORE his diagnosis, I have to confess that in the past I too thought that a gluten free diet was a trend like low carb or low sugar, etc. and there sometimes were people who latched onto every "fad" health problem and went on that particular diet, only to find that they never had this disease or health problem.

Many unscrupulous operators of health food stores or supplement manufacturers used to try to convince gullible people by diagnosising them with fictitious ailments and that if they ate a certain diet they'd get better. Usually after the person would buy all the specialty stuff they needed, it would be discovered that the ailment either never existed or that they should have seen a real doctor in the first place as it was a symptom of something serious. I knew people like that who every year was trying something new.

I'd see products in health food stores that stated "GLUTEN FREE" and I wouldn't think anything about it except that it was some type of health diet, probably a fad.

Never in my wildest imaginings did I think it was a health diet of a more serious nature.

It's only lately that celiac is in the news; prior to that no one heard of it unless someone in their family was diagnosed with it and that would have been rare due to how infrequently it was diagnosed in the past.

I probably wouldn't have made a verbal statement like that rude woman (from the first post) did, but it may have crossed my mind that this gluten free diet was probably a fad diet for people like bodybuilders or the health obsessed, and I would have dismissed it and maybe kind of shrugged - after all I was totally ignorant of WOBR being a poison to those who have celiac disease. It was unthinkable to think that a food would be poisonous - it's food. So being there, I can understand how a person could think a gluten free diet is optionable, especially if this person had never heard of celiac and to her it was inconceivable that someone's system would reject a grain.

Perhaps later that night or the next day someone pulled her aside and told her that celiac really exists & she'd regret saying what she did. Then again, some people are deliberately mean spirited and no matter how many facts are presented to them they still hold onto their erronous view points and we have to pity them.

For those who were diagnosed in their adulthood, who did not have other celiacs in their families, what would you have thought a "gluten-free" diet was for? Just checking to see if anyone else, prior to learning about celiac disease, knew what "gluten-free" was all about....


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Guest nini

I have a friend that I've known since high school, and about 10 years ago she told me her mom had celiac and was on a gluten free diet and suggested that I needed to try it... I thought at the time that my friend was just nuts and so was her mom... but after two miscarriages, she brought it up again and that time I tried it and successfully made it through the first trimester with my daughter before the dr. told me that the gluten-free diet was bad for the baby... so, it took me until my daughter was 3 1/2 before I was accurately dx'ed with celiac and put on the diet... But before that, I did think that people who were on a gluten-free diet were just health nuts! Now that I'm one of the nuts, I obviously don't think that way anymore, but I never would have said anything as rude as that woman said... I just couldn't. It's not in my nature.

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That rude woman is obviously lumping Celiac in with all the fad type diets. However, I don't consider Atkins a fad diet, as many overeat carbs, but that's for a different post. She just sounds like she has diarrhea of the mouth.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I understand what you guys are saying, and to be honest I think I might have thought the same thing 5 years ago. By the time I heard about the gluten-free diet I was willing to try ANYTHING! I think if someone had come up to me and told me that a strict diet of radishes and anchovies would help I probably would have given it a try! :lol: It's just too bad that is public perception though. I get so sick of feeling like I have to defend my condition and make people realize I'm not just a quack! :angry: I bet diabetics never feel this way! I wonder if Celiac disease will ever be recognized by the average person as a serious condition....I guess maybe it's because celiac disease is not that visible. We suffer at home on our bathroom floor away from everyone to see the misery that eating the wrong thing can cause.

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Yes--what Nini said is true. While I didn't know about the gluten free diet, either, before all of this started for me, I also may have thought that it was an optional type of diet. But to say something like that out loud to someone is just rude. You never know what someone is going through--


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Goodness I've had my share of rude comments hurled at me.

When explaining the constraints of eating out, people (like family & co workers) would say "Well, what can he eat?" Then there's the comment "He's lucky to have you for a wife. Most women wouldn't have stayed in a marriage where the husband was sickly." I've had people think they are doing me a favor & tell me to actually leave and divorce him due to his illness. Telling me I am young enough to start over again. This is all unsolicited advice and starts out as an innocent conversation as to maybe why we aren't going on vacation this year or why we don't go out to eat in restaurants then it morphs into why he's not working or some other nonsense like that. Before I realize it, I am being lambasted and judged.

For some reason they feel it's OK to direct this at me because I am my husband's caretaker (he has celiac disease, not me) like this stuff doesn't hurt my feelings or that I don't talk to him and tell him what they are saying (no, I don't). But he picks up on it by their coldness and their stilted conversation with him at family functions. As if they feel that he's really faking having a disease and I'm being duped by him. So they "cut" him and leave him out, forget his birthday or change the subject when I speak of him to them. And his only transgression is that he got violently sick and never got better.

So what rude people say doesn't surprise me.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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It amazes me the callousness of people. I know my cats will never leave me because of my diseases or gluten me.

The best thing to ask those people is when is their spouse divorcing them for their callous and stupidity disease, after all we can control our disease obviously they can't control theirs. When people ask me what I can eat I tell them everything they can, just mine is better for me than theirs is for them.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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Living well is the best revenge! :P

That says it all right there. You can explain it to some people until you are blue in the face and they still won't get it. The only thing you can do is get healthy and move forward while the dumb@sses stay in one place or regress.


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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Goodness I've had my share of rude comments hurled at me.

When explaining the constraints of eating out, people (like family & co workers) would say "Well, what can he eat?" Then there's the comment "He's lucky to have you for a wife. Most women wouldn't have stayed in a marriage where the husband was sickly." I've had people think they are doing me a favor & tell me to actually leave and divorce him due to his illness. Telling me I am young enough to start over again. This is all unsolicited advice and starts out as an innocent conversation as to maybe why we aren't going on vacation this year or why we don't go out to eat in restaurants then it morphs into why he's not working or some other nonsense like that. Before I realize it, I am being lambasted and judged.

For some reason they feel it's OK to direct this at me because I am my husband's caretaker (he has celiac disease, not me) like this stuff doesn't hurt my feelings or that I don't talk to him and tell him what they are saying (no, I don't). But he picks up on it by their coldness and their stilted conversation with him at family functions. As if they feel that he's really faking having a disease and I'm being duped by him. So they "cut" him and leave him out, forget his birthday or change the subject when I speak of him to them. And his only transgression is that he got violently sick and never got better.

So what rude people say doesn't surprise me.

I am so sorry for the harsh treatment you and your husband have had to tolerate. I don't know what I would do if my husband was treated the way you have described. I'm the one with celiac, not him, but he goes gluten free with me, he doesn't think twice about the grocery bill that is at least twice as high, he too, takes up for me with the ignorant among us. I bet your husband knows how special you are, just as I realize how special my spouse is. I guess when others took the vows, "for better or worse, in sickness and in health...." they just blew it off. I commend you on your courage and your love.

Thank you for shareing-sorry that ya'll have had to deal with so much, but it sounds like when you found each other, you truly found a soul mate!

Lollie


tests inconclusive, diet conclusive January 2006

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Lollie,

You just posted EXACTLY what I was going to post to debmidge. My first thought also was "I guess those people don't take their wedding vows seriously when the say "For better or for worse, in sickness and in health".....

Debmidge, that is alot that you have had to deal with. Hugs to ya.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Guest nini

I was going to say the same thing... whatever happened to for better or worse, sickness and health? sure we don't expect we will actually have to deal with "worse" and "sickness" but there it is and you have to dea. If my husband had divorced me because I was sick, I probably would have committed suicide from the loss of a soul mate compounded with the depression that plagued me for years... But Thank GOD he didn't. I'm grateful he just kept saying to me, "THERE IS SOMETHING WRONG WITH YOU, keep going back to those Dr.s or find a new one until they figure out what is wrong with you"

I don't know if he ever contemplated leaving me because of it, but I really don't think so. So anyone that could suggest a spouse leave the other because of an illness, they are seriously stupid.

oh, and I do know that this disease HAS ruined it's fair share of relationships, probably partly due to the healthy spouse getting bad advice from friends or relatives telling them to just cut their losses and leave the sick spouse because they are dragging them down... whatever.

I remember my vows, my hubby does too... we are in this for the long haul... there have been times when I was the one getting the advice to leave him... when he was out of work for a time... not like he wasn't trying... other people seem to think that they know what is best for other's. They just need to mind their own business.

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"He's lucky to have you for a wife. Most women wouldn't have stayed in a marriage where the husband was sickly." I've had people think they are doing me a favor & tell me to actually leave and divorce him due to his illness. Telling me I am young enough to start over again. But he picks up on it by their coldness and their stilted conversation with him at family functions. As if they feel that he's really faking having a disease and I'm being duped by him. So they "cut" him and leave him out, forget his birthday or change the subject when I speak of him to them. And his only transgression is that he got violently sick and never got better.

I have been in your husbands shoes. I have no doubt that some of my ex-wifes idiot friends talked her into filing for divorce. They all, except for one, hated me right from the start. I had no desire to get divorced but my ex-wife demanded it. It is really disturbing how wedding vows only apply during the good times. The only exception is the one friend of my ex's that later became my significant other. What goes around comes around and these people will get what they have coming to them.


If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.

Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?

Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.

Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

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Then there's the comment "He's lucky to have you for a wife. Most women wouldn't have stayed in a marriage where the husband was sickly." I've had people think they are doing me a favor & tell me to actually leave and divorce him due to his illness. Telling me I am young enough to start over again.

I am perpetually amazed by the shallowness of people :blink:

Each day, I wake up with a renewed faith in humanity. And then I get out of bed... <_<

And celiac isn't that big of a deal as a disease really, it's not terminal cancer or AIDS or ALS or any one of the horrific diseases there are out there. People would get divorced over not being able to eat at red lobster?!?!

I'm not undermining celiac, I just think we're all really lucky, because it could always be worse.

I'm glad my husband was there at the beginning of my illness and married me anyway, sickness and worse can happen :unsure:


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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I also am shocked at the horrible things that people will say. Debmidge, you and your husband are in it for the long haul. If the shoe had been on the other foot, you would not have left him. Whatever happened to compassion for others in this world? I asked my husband last week, if during the 30 plus years of being treated like a hypochondriac by doctors, friends and relatives, if he ever thought I was one. He said it never entered his mind and said why would I lie to him. Such faith!! And, as someone said, we eat the same as everyone else - just a lot more carefully.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Some people are just blooming idiots! Just brush off the rudeness, don't let others steal your peace. Try to be thankful that they haven't had to learn about celiac the hard way.


Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

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Then there's the comment "He's lucky to have you for a wife. Most women wouldn't have stayed in a marriage where the husband was sickly." I've had people think they are doing me a favor & tell me to actually leave and divorce him due to his illness. Telling me I am young enough to start over again.

Comments like these are *never* called for. Assumptions about the boundaries a marriage and people crossing them are not topics for casual conversation. I had something similar said to me when I was looking for support with my vulvar vestibulitis. As you can imagine, for a condition that makes sex painful, we didn't have sex much. Someone on a support message board for sex conditions told me, flat out, that my husband must be cheating on me, or soon will, because I wouldn't have sex with him.

While I realize that many people couldn't deal with rough times in a marriage, and a chronically ill spouse is a rough time, only jealousy and insecurity makes someone try to bring someone else down to their level of running away. Grr!


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Someone on a support message board for sex conditions told me, flat out, that my husband must be cheating on me, or soon will, because I wouldn't have sex with him.

Ha, you did say this was a 'support message board' didn't you :ph34r:

This one takes my breath away.... :o:angry:

Hope you put take person on the option of 'blocked' <_<

I'm so sorry this happened to you.

Judy in Philly


Judy in Southern CA

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Most of these comments were made during those years he was misdiagnosed - doctors could not find what was wrong and eventualy the consensus was that he was "making it up" to get out of working. But only I could see him every morning waking up looking ashen faced and stomach bothering him; no energy and weight below 140 (his natural weight should have been about 165-170). Others just saw a man who didn't complain about his illness, had a smile on, and for all appearances generally looking normal to them. They didn't hear his belching and deal with his other symptoms.

Now when I speak to people I try not to talk too much about myself but conversation sometimes comes around to food and why we don't go to restaurants, etc. So some of it is unavoidable. I just try to change the subject. My family is still somewhat unconvinced but at least they've stopped giving unsolicited advice. I guess it baffles them that we are married for 26 years now and have known one another for almost 32 years.

Sometimes you get "meanies " on a support board. It's just the nature of some people.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I too had a frustrating experience Friday night when invited to a neighbors for dinner. She said that she was having chilli and asked if I could eat it. I asked her to save the ingredience for me to read, and she said that she would be more than glad to.

I offered to bring a ceasar salad. (looking out for myself).

When, we got there and I was helping in the kitchen. She totally changed the menu and we were having pork, well ok. Then she said that she put bread crumbs on the pork. WHO IN THE H*** PUTS BREAD FRIGGIN CRUMBS ON A PORK ROAST. "Oh, I forgot you can't eat the pork". While others were dinning and complementing the chef, I ate my salad. Pisser.

For a neighbor who feigns concern over my illness.............THIS REALLY PISSED ME OFF.

People sometimes really seem to care, but THEY JUST DON'T GET IT. :angry::angry:


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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WHO IN THE H*** PUTS BREAD FRIGGIN CRUMBS ON A PORK ROAST. "Oh, I forgot you can't eat the pork".

Oh for frigging sake. I don't know who the heck does that...If it wasn't so sad, it would be so funny but afraid to put the laughing face on for fear you'll come after me.... :blink:

I could make a joke out of it--but still wouldn't make you feel any better.

I'm so very sorry. :o:o<_<

send me your email address in a pm and I'll send you something that will make you laugh..sounds like you could use one. Can't do through the forum email. it's ok if you would rather not :ph34r:

Judy in Philly


Judy in Southern CA

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:(:(:( My e-mail is listed on the members list.

L

Thanks lisa, my attachment can't come over the forum I DON'T THINK BUT I'LL TRY SENDING SOMETHING TO MY SELF AND SEE.

JUDY


Judy in Southern CA

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I too had a frustrating experience Friday night when invited to a neighbors for dinner. She said that she was having chilli and asked if I could eat it. I asked her to save the ingredience for me to read, and she said that she would be more than glad to.

I offered to bring a ceasar salad. (looking out for myself).

When, we got there and I was helping in the kitchen. She totally changed the menu and we were having pork, well ok. Then she said that she put bread crumbs on the pork. WHO IN THE H*** PUTS BREAD FRIGGIN CRUMBS ON A PORK ROAST. "Oh, I forgot you can't eat the pork". While others were dinning and complementing the chef, I ate my salad. Pisser.

For a neighbor who feigns concern over my illness.............THIS REALLY PISSED ME OFF.

People sometimes really seem to care, but THEY JUST DON'T GET IT. :angry::angry:

If I didn't know any better, I'd say you lived next door to the woman that told me about celiac, then later told me I got sick eating whole wheat because my intestines were not used to roughage!


Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

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Lisa - I'm sorry that happened to you. My first gluten-free meal at someone's home isn't until next month when a close friend has her 40th b-day tea party. I have to take my own tea sanwiches, scones, and lemon curd needless to say. She has safe tea, honey and champagne but she is having the food part catered so she called the lady making the food to ask what all went into the egg salad as she wanted to get just some egg salad plain in a container for me. That was so sweet but of course the caterer has no idea what the heck gluten is so she can't possibly prepare anything for me to eat unless I call and tell her how to which I don't want egg salad that much anyway. I love my own egg salad after all.

I agree with Judy....who the heck does put bread crumbs on the pork??!!! I just don't think people think. My vegetarian friend told me about his ex-MIL who used to say all the time...can't he just pick the chicken out? :blink: NOOOOOOOO! :o


Dx'd with anemia - March 2005

Positive blood tests - Sept. 2005

Positive biopsy - Jan. 2006

Gluten free since 1-23-06

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