Just A Reminder...keep Spreading The Word!

[jenvan]

Just got an e-mail from my mom that can serve as a reminder and encouragement to all of us to keep spreading the word, even to people who don't potentially have celiac disease. My mom got an e-mail from a coworker that she mentioned Celiac to...b/c she has ongoing GI issues. This coworker (April) has kept in touch with a woman who no longer works at the office, whose daughter has been sick for a long time. They have tested her for everything but Celiac, of course, until April mentioned the disease to her mom, b/c of what my mother had told her. The mom finally found a GI doc who tested her in the ER--and her daughter has it! April e-mailed my mom about it today. She said the daughter has been on the diet for one week and feels so much better already. I bet we could start a 6 degrees of Celiac separation with these kind of stories! It all trickles down... Just thought I'd share!

[Guest Robbin]

Awesome Jen!! I love that! I am hearing more and more stories like this and by getting the word out, we can make a difference in someone else's health and life-what a great story, thanks!

[DingoGirl]

Good news, Jen! It's so refreshing when someone actually listens. We do have to, unfortunately, keep getting the word out because people seem to think this disease is just so obscure and also, I find they just don't understand all the ramifications - how could they unless they lived it?

There is a friend from my past, we have totally lost contact and I think I wore her out a couple of years ago as I was becoming more sick and depressed....and she was already so worn out and depressed.....she is Norwegian and I now reflect on all her decades of "irritable bowel" and chronic depression - her mother is a complete basket case, amost schizophrenic in her delusions and food runs right through her, what little she eats....I absolutely KNOW these two are Celiac, and I think I'll just send my former friend a short note in the mail, I keep feeling this nudge to do it, asking if she's ever been tested for Celiac. I don't think it can hurt....but I have another friend, who wore ME out, another half Norwegian who I also am extremely certain has Celiac....I've emailed her about it a couple of times, but she won't look into it and continues to ignore anything I gently say about it.....I think she'd rather, at almost 50 years old, continue to suffer and be miserable - it's her familiar coping mechanism.

but we must continue our crusade!

[Katydid]

I totally agree with spreading the word. My husband is celiac. In the course of conversation with a coworker, she asked what his symptoms were. When I told her, she asked if I would talk to her sister who had GI symtoms and constant D. Her GI was treating her for diverticulitus and C-diff (sp). When she related all of her symptoms to me, I suggested she ask for the celiac blood work and gave her the names of the tests. Her doctor refused stating he wouldn't do it because he didn't think she had celiac. She went ahead and started the gluten free diet on her own and within 4 days her D stopped and she gradually continued improving drastically over the next month; at which time she called her doc and advised him she was well. His only comment was that it must have been a coincidence because he was sure she didn't have celiac. That was last January and she remains on the diet and is now the picture of health and so very happy. (this from a lady who even missed her own brother's funeral out town because she was so sick and her D was so frequent and urgent she was afraid to get on the highway)

She, in turn, has a friend with the same symptoms and suggested she try the diet. Her friend pretty much poo-poo'd the idea. But at her next dr's visit, the friend casually mentioned to her doc that her friend suggested she try the gluten free diet. She said he looked as if a light went off in his head and said.."Say, you do have celiac symptoms, lets do a blood test". They were positive; and she went on to have the biopsy which was also positive; and she is now on the gluten free diet and extremely healthy.

Both of these women were very ill. Just this little exchange of conversation with a co-worker totally transformed them into very healthy and happy human beings.

We should all 'reach out and touch someone' whenever we get the

Katydid

[DingoGirl]

Grrrrrrrrrrrrrr......some doctors make me SO MAD..... What is this Celiac Denial so many of them are in?? Your other friend found a good one, at least. my regular physician says she would never prescribe antibiotics to me due to my "intestinal condition, " and I asked her if she had any other Celiac patients, she said no......she has no idea about Celiac and I have had to inform HER.....

[snapple]

I also think the word needs to be spread. I struggled with C and D for over a year; it seemed to cylce on me. I have a very good friend that was finally dx'd with celiac and was talking me through some horrific cramps when a light went off in her head. She kept telling me that she thought I would benefit from a gluten free diet, but I shrugged it off. Finally, it got so bad that I went to my dr, who thought that it couldn't be celiac b/c my body was cycling. She did say however that she didn't know a lot about the disease and that if I wanted to try going gluten free she wouldn't say no. I waited another 6 months, trying other methods, until one day when I had pasta for dinner and ended up in a ball on the couch feeling like my entire stomach was seizing up. The next day I called my friend and told her I give up, anything was better than feeling that way! I have been gluten free for 8 months and have never felt better. Even my lactose intolerance is gone! Yay! Needless to say I kiss the ground she walks on and hope that one day I can pass on the enlightenment to someone else.

[Katydid]

Snapple - I don't think a lot of folks understand the 'cycle' thing. After all, it does stand to reason that if you can't eat gluten on Monday, you shouldn't be able to eat it on Friday...Right?

But that is exactly how it happened with my husband; and that is what makes it so hard to pin down. He loved to have a beer and a pizza. One time it would tie him in a knot; and a month later he would have no symptoms from it at all. He used to tell the doc that it seemed like he got the flu about every six weeks, then every four weeks. Eventually, it was constant. But in the early stages it cycled.

[snapple]

Snapple - I don't think a lot of folks understand the 'cycle' thing. After all, it does stand to reason that if you can't eat gluten on Monday, you shouldn't be able to eat it on Friday...Right?

But that is exactly how it happened with my husband; and that is what makes it so hard to pin down. He loved to have a beer and a pizza. One time it would tie him in a knot; and a month later he would have no symptoms from it at all. He used to tell the doc that it seemed like he got the flu about every six weeks, then every four weeks. Eventually, it was constant. But in the early stages it cycled.

That is exactly what would happen. I started noticing it when I would get my period. I just thought it was part of my regular cramping, but as time went on it was getting worse and happening for longer periods of time. Then it started happening at other times during the month and that is what got me moving. I realized that I had to do something about this or it would just keep getting worse!

[debmidge]

Grrrrrrrrrrrrrr......some doctors make me SO MAD..... What is this Celiac Denial so many of them are in?? Your other friend found a good one, at least. my regular physician says she would never prescribe antibiotics to me due to my "intestinal condition, " and I asked her if she had any other Celiac patients, she said no......she has no idea about Celiac and I have had to inform HER.....

I think they react that way because they didn't think of it themselves.

Several weeks ago my best friend who is a carpet/tile dealer was speaking with a customer at her home and the customer told her that since she was diagnosed with a disorder that perhaps my friend never heard of: celiac disease. Well my friend absolutely knows the condition (from us) and was able to converse with her about celiac. Her customer was teling her how she can no longer eat at just any restaurant or anyone's home unless she first knows the food is gluten-free, etc. Imagine her surprise when my friend stated she knew what she was talking about.

The power of being informed.

[olalisa]

Jenvan is right....talk it up!

Have any of you met with resistance, though? One of my best friends and one of her daughters have CLASSIC symptoms of celiac. My friend's dad also died in his 60's of some kind of upper GI adenocarcinoma...hmmmmmm. My friend,however, who is VERY intelligent (a food scientist, actually) refuses to be tested or to have her teenage daughter tested, basically because she doesn't want to KNOW if they have it. The old "ignorance is bliss" philosophy. I'm stumped. I don't want to hound her, but geez....any suggestions?

[2kids4me]

Have any of you met with resistance, though?

Yup, my brother's sister has a son with many symptoms. I mentioned that her son should be tested because of the genetics - 2 cousins with it after all. Her reply: No, husband wouldnt be able to handle special diets in the house. ??

So then I said - well not everyone would have to change their eating. She then says : dont have the time, too much trouble........

[debmidge]

Jenvan is right....talk it up!

Have any of you met with resistance, though? One of my best friends and one of her daughters have CLASSIC symptoms of celiac. My friend's dad also died in his 60's of some kind of upper GI adenocarcinoma...hmmmmmm. My friend,however, who is VERY intelligent (a food scientist, actually) refuses to be tested or to have her teenage daughter tested, basically because she doesn't want to KNOW if they have it. The old "ignorance is bliss" philosophy. I'm stumped. I don't want to hound her, but geez....any suggestions?

Husband's sister probably has Celiac (has gastro symptoms, weight loss just like her brother) and she refuses to be tested- she doesn't want the inconvenience of this diet, so to her it's best not to know. She says she couldn't do the diet. Conversely enough she could do it just as well as my husband does because she doesn't work and doesn't travel anywhere; she likes to eat out however, but she could just make informed choices, but it'll ruin it as she likes to eat at Italian restaurants (think wheat breading and wheat pasta). That would be one of her sacrifices.

Meanwhile she suffers from the symptoms and adjunct health issues from undiagnosed celiac disease

[gfp]

Yup, my brother's sister has a son with many symptoms. I mentioned that her son should be tested because of the genetics - 2 cousins with it after all. Her reply: No, husband wouldnt be able to handle special diets in the house. ??

So then I said - well not everyone would have to change their eating. She then says : dont have the time, too much trouble........

Who is doing her laundry ?

Seriously if only from the aspect of not worrying about this!

However more seriously ....

I just got back from Italy ... and it seems almost everyone knows of celiac. The diagnosis rate is 1:200 as all young children are tested so everyone knows someone with celiac .... so when you start your explanation to the waiter then don't look at you like you just grew two horns, a third eye and a tail ... (you know that look )

I even got gluten-free beer in resto's with gluten-free pizza and pasta! Now given the price of Italian wine it was a hard decision ... gluten-free beer or wine with the pizza but heck it was nice to be asked!