The Ignorance Hurts My Brain!

[BlessedMommy]

Yesterday, I went to a potluck. I set aside my gluten free food before the meal and set it on the table where I was going to sit. My friend explained to someone standing there that I suffered from gluten intolerance. I started to explain to the lady what gluten was. She said, "Oh I know all about it! I used to have celiac disease! I had it for about 5-6 years!" I said, "Ma'am, if you were ever diagnosed with celiac,that means that you still have it, celiac is a lifelong condition."

 

She then expounded on how she cheated on her gluten free diet weekly and eventually stopped having symptoms from gluten consumption. She went back to her doctor and asked him to retest her and see if she still had celiac disease. The doctor said, "Do your own testing and if the gluten doesn't bother you anymore, I don't see why you would have to avoid it."

 

I explained to her that there's such a thing as being an asymptomatic celiac and she still didn't believe me.

 

Ack! Just want to bang my head against a wall! Ignorance like this makes it all the harder for those of us who are trying our best to eat strictly gluten-free all the time.

 

I wonder if the doctor got his medical degree from a cracker jack box? 

[w8in4dave]

Ohhh my! Lol That is funny! Did she make that whole story up or something? What Dr. In their right mind tell someone they have Celiac and then tell them if iy doesn't bother them just go ahead and eat it! ?? 

[cahill]

that doctor  was educated the same place other doctors are medical school

Until our doctors are better educated about celiacs this will continue to happen ,,, scary isnt it

[nvsmom]

Ugh. That's just such a shame. That poor woman will probably eat herself into an early grave.  

[livinthelife]

Sure hope she gets a colonoscopy to check for polyps! 

 

I get asked all the time if it'll ever go away. NOPE!!

[NoGlutenCooties]

I wish I could say I was surprised.  My sister is a Registered Nurse and generally a very smart woman.  But she has started to have issues with gluten and came to the conclusion that she doesn't need to get tested and doesn't need to worry about cross-contamination as long as she doesn't eat anything that makes her feel icky.  All you can do is calmly explain the myriad of ways they are wrong, ignore the blatant disbelief in their eyes, and let them figure it out for themselves the hard way.  And if you're really mature you can even hold back the "I told you so" when they finally realize they've been slowly killing themselves and now it will take years to get their health back.

[kareng]

Its possible she doesn't even have Celiac.  I have had people say that they had Celiac but not now.   When I ask for more details, it doesn't sound like they were ever actually diagnosed with Celiac.   A couple had a wheat allergy as a kid that they seem to have grown out of (hives, stuffy nose symptoms).  A couple decided they have Celiac and then got tired of it.  

 

These people make me mad because they add to the mis-information and keep people from taking us "real" Celiacs & NCGI seriously.

[moosemalibu]

I had a friend tell me that she knew people that resolved their Celiac over time and were able to eat gluten again. I had to set her straight on that one multiple times. Now she gets it. But there is a lot of people out there with bad information.

[BlessedMommy]

If someone "decided" that they had celiac, then eventually tired of it and started eating gluten, I take it that their symptoms weren't too bad. I don't have a celiac diagnosis and I won't ever go back to gluten. I've been gluten-free for 4 years and will remain so for life.  I had a TIA at age 27 due to chronic headaches from gluten.

 

My husband has a tongue in cheek saying that if I decide to get careless with my gluten-free diet, then better double my life insurance policy! LOL! For me it's a matter of avoiding deadly complications like stroke and living to see my kids grow up. 

 

Anybody that "couldn't stick with it" either didn't have a real diagnosis or didn't have very big health problems from gluten, IMO. 

 

 

 

  On 2/24/2014 at 2:32 PM, kareng said:

Its possible she doesn't even have Celiac.  I have had people say that they had Celiac but not now.   When I ask for more details, it doesn't sound like they were ever actually diagnosed with Celiac.   A couple had a wheat allergy as a kid that they seem to have grown out of (hives, stuffy nose symptoms).  A couple decided they have Celiac and then got tired of it.  

 

These people make me mad because they add to the mis-information and keep people from taking us "real" Celiacs & NCGI seriously.

[purpleorchid620]

  On 2/23/2014 at 6:01 PM, BlessedMommy said:

Yesterday, I went to a potluck. I set aside my gluten free food before the meal and set it on the table where I was going to sit. My friend explained to someone standing there that I suffered from gluten intolerance. I started to explain to the lady what gluten was. She said, "Oh I know all about it! I used to have celiac disease! I had it for about 5-6 years!" I said, "Ma'am, if you were ever diagnosed with celiac,that means that you still have it, celiac is a lifelong condition."

 

She then expounded on how she cheated on her gluten free diet weekly and eventually stopped having symptoms from gluten consumption. She went back to her doctor and asked him to retest her and see if she still had celiac disease. The doctor said, "Do your own testing and if the gluten doesn't bother you anymore, I don't see why you would have to avoid it."

 

I explained to her that there's such a thing as being an asymptomatic celiac and she still didn't believe me.

 

Ack! Just want to bang my head against a wall! Ignorance like this makes it all the harder for those of us who are trying our best to eat strictly gluten-free all the time.

 

I wonder if the doctor got his medical degree from a cracker jack box? 

Oh my!! Some people these days just are so ignorant and the worst part is the doctor that didn't correct her! I have had a problem with people that are doing the gluten-free diet as a trend. They just don't understand how serious it is. 

[w8in4dave]

Just the other day someone asked me "what do they give you for Celiac?" I said nothing... Its up to me to change my diet. And they said "ohhh how long do you have to be on this diet?" I said forever... And then came the "But you can have some can't you?" LOL Nope not even a drop! Ever!! 

[Gemini]

  On 2/23/2014 at 10:59 PM, livinthelife said:

Sure hope she gets a colonoscopy to check for polyps! 

 

I get asked all the time if it'll ever go away. NOPE!!

I don't think Celiac Disease causes polyps in the colon.....it is a disease of the small intestine.

 

You know, I follow a strict gluten-free diet and never cheat.  I am a diagnosed Celiac.  Yet....my family are loaded with people who are symptomatic and refuse to be tested.  My mother is one and she will never, ever go gluten-free.  At 81, she certainly has some health problems related to the disease but has always had clean colonoscopies and is not near death in any way.  I know some people can die from Celiac because I was one of those skinny ones who came damn close but apparently, there are many people who can stick their heads in the sand and still eat gluten and go on to live a long life, without getting cancer or the other dreaded diseases people here think are an absolute if you don't go gluten-free.  I will never cheat and can't understand why anyone else would but its more from the perspective that it makes me so sick, I could never have quality of life if I did cheat.  That is far more important to me than thinking your insides will burst with cancer if you don't follow the diet....because it may never happen.  My family history is almost non-existant for cancer of any kind but is loaded with autoimmune disease.  Most all of my relatives live to be in their late 80's to mid 90's...with symptoms of Celiac.  I can't figure it out. 

[frieze]

I think some one should study the different gene combos, would probably explain some of the differences....

[cahill]

  On 2/28/2014 at 10:55 AM, frieze said:

I think some one should study the different gene combos, would probably explain some of the differences....

I agree

 but there is no money to be made on celiacs  so funding for that kind of research will be difficult to find . No pharmaceuticals, no funding .

[soos]

My family are the worst 'a little bit won't hurt, surely' I say yes it will but they think I just get belly ache and then its over, I wish

My husband buys stuff and still offers me and when I say I can't eat it he says 'sorry, yeh, I forgot! After 3 years!!!!!

[w8in4dave]

A girl in one of my groups said " I know for Celiac there is a range on how much gluten you can eat" I'm said "well actually Gluten Free means Gluten Free. The range is 0. " But some you just cannot convince. They don't have it, but they know how much you can eat and how you can heal. I am a fanatic about it! I won't take a drop. At 1st my husband said "Well you can have some" I said
"no! It's like eating poison ivy" He has been wonderful actually He got some sandwich spread yesterday and today he gets home reads the label and said "I think you can eat this" He reads off the label ... " I said really even if I could I wouldn't it's got too much crap in it. If you cannot pronounce it forget it! !" LOL