Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):
    GliadinX

    Celiac.com Sponsor (A1-M):
    GliadinX

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

The Ignorance Hurts My Brain!

BlessedMommy

By BlessedMommy
in Coping with Celiac Disease

Recommended Posts

BlessedMommy Rising Star
BlessedMommy
Posted

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? 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Food for Life
Food for Life

Celiac.com Sponsor (A8-M):
GliadinX

w8in4dave Community Regular
w8in4dave
Posted

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 Collaborator
cahill
Posted

that doctor  was educated the same place other doctors are medical school :ph34r:

Until our doctors are better educated about celiacs this will continue to happen ,,, scary isnt it :ph34r:

nvsmom Community Regular
nvsmom
Posted

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

livinthelife Apprentice
livinthelife
Posted

Sure hope she gets a colonoscopy to check for polyps! 

 

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

NoGlutenCooties Contributor
NoGlutenCooties
Posted

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 Grand Master
kareng
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Food for Life
Holidaily Brewing Co.

Celiac.com Sponsor (A8-M):
Daura Damm

moosemalibu Collaborator
moosemalibu
Posted

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. :o

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

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. 

 

 

 

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 Newbie
purpleorchid620
Posted

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 Community Regular
w8in4dave
Posted

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 Experienced
Gemini
Posted

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.  :huh:

frieze Community Regular
frieze
Posted

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

cahill Collaborator
cahill
Posted

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 . :wacko:

soos Newbie
soos
Posted

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 Community Regular
w8in4dave
Posted

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 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse


  • Member Statistics

    • Total Members
      130,552
    • Most Online (within 30 mins)
      7,748
    Bethann Sheridan
    Newest Member
    Bethann Sheridan
    Joined
  • Celiac.com Sponsor (A20):
    Tierra Farm

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):
    GliadinX


  • Celiac.com Sponsor (A21):
    Lakefront Brewery


  • Upcoming Events

  • Posts

    • trents
      Is "Shield" skincare products gluten-free?

      By trents · Posted

      @LynnM, when you say, "today, his numbers were high", what numbers do you refer to? Are you speaking of celiac antibody scores? Can you be more specific and can you post the test names, the numbers and the reference ranges for the tests? So, I am understanding you to say that topical exposure to gluten doesn't cause him GI reactions but ingestion of gluten does but at the same time you are attributing the "high numbers" to the topical exposure?
    • Ginger38
      Abnormal Labs, Should I Be Concerned?

      By Ginger38 · Posted

      So I recently had blood work and my hemoglobin, hematocrit, protein and alkaline phosphatase were all low. They have never been low in the past but since august of last year I have been on the in and off gluten rollercoaster as I mentioned in previous posts. Should I be concerned with these new findings? I am worried I have made myself really sick and done damage or something this past year 
    • LynnM
      Is "Shield" skincare products gluten-free?

      By LynnM · Posted

      Thank you Scott. My son doesn't have a reaction topically, only when ingested. Interestingly though, the doc told us the face cream getting gluten into his bloodstream doesn't do the damage akin to when gluten is ingested. He had no reaction when using the face cream, it only presented in blood-work. I'm hopeful from all the comments today and will wait for the GI doc to reply. If he is cleared to use it, I will encourage SHIELD to get a gluten-free certification 
    • Scott Adams
      Is "Shield" skincare products gluten-free?

      By Scott Adams · Posted

      It’s great that you’re taking the time to research products carefully for your son with celiac disease—especially since accidental gluten exposure through skincare can be a real concern for sensitive individuals. Based on the ingredient lists you’ve shared, none of the products appear to contain obvious sources of gluten like wheat, barley, or rye derivatives. Ingredients like glycerin and tocopherols (not listed here but often a concern) can sometimes be derived from wheat, but many manufacturers use plant-based or synthetic sources. SHIELD’s transparency and willingness to share their full ingredient list is a good sign, and their note about not intentionally adding gluten is reassuring. Still, because ingredient sourcing can vary and sensitivities differ from person to person, it’s wise that you’ve reached out to your GI specialist to be sure these products are safe for your son’s specific needs. In the meantime, if you do try any of the products, consider patch-testing them first and watching closely for any signs of skin irritation or reactions. PS - Most people with celiac disease won't react to skin products that may contain gluten, but I still recommend finding gluten-free products.
    • LynnM
      Is "Shield" skincare products gluten-free?

      By LynnM · Posted

      Greetings Trents and Scott. This is the first time I'm posting here so I apologize in advance if I'm not replying properly. My 13 YO was diagnosed at age 5 and once gluten was removed from his diet, he grew 3" in a year, skin became much better and dark circles around his eyes disappeared. Today his numbers were very high and our new dietician discovered his face cream (Clinique dramatically different lotion) contained gluten. My fault for not checking.    His acne really has only just started and he's using OCT gluten-free products but the SHIELD is nothing short of miraculous for my 16 YO son and the 13 YO is eager to start. I will await his dietician's reply or google each ingredient.    I don't want to put him on that Rx as it's not that bad and isn't painful either. Just a boy starting 8th grade and doesn't want bad acne.    When I hear back I will circle back. 
×
×
  • Create New...