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Do You Take Your Celiac Disease Seriously?


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50 replies to this topic

#46 w8in4dave

 
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Posted 30 September 2013 - 04:18 AM

Abby,

 

As you found out in this Topic, cheating is never an option when you have Celiac Disease.  When a diagnosed Celiac gets gluten somehow the body starts an all out autoimmune attack and we know how that feels, horrible.  I have the belief that if someone has diagnosed themselves as a Celiac and does not have a full force attack when they get gluten then the urge to cheat may be greater.  They have the "unknown" factor of not really knowing if they are damaging themselves or not.  I also believe that if someone with NCGI eats gluten, it is with the understanding that they may get all the usual symptoms but know there is no damage being done.  Even some people with a diagnosis in hand may cheat because they just don't care.  These factors may influence future decisions whether to eat gluten or not.   I also believe that the longer you eat gluten free the easier it is to resist any and all temptations.  When our minds forget what something tasted like or how it made us feel happy, than those cravings and urges fizzle away. 

 

Modifying your diet is the easy part of treating Celiac Disease.  Modifying your behavior is the hard part.

 

Colleen

And your first sentence is my favorite!! When I first found out I had Celiac, my husband said "Ohhh you can have a lil" I said no a lil Gluten is like eating Poison Ivy"   Cheating is never an Option! 


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Recovering Gluten Eater 

DX'd June 17th 2013


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#47 GFinDC

 
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Posted 30 September 2013 - 06:37 AM

I do take the gluten-free diet seriously.  But I can understand why people new to the gluten-free diet may not take it seriously at first.  In my case I ate gluten most days for 5 decades before some knucklehead told me I couldn't do that anymore or I would die.  That is kind of hard to take in at first.  After all, it didn't kill me for 50 years so it seems strange to think it suddenly would.  But things do change.  Inlcuding our bodies.  So after a while it sank in and I stuck to the diet as best I could.  Which wasn't great at first, since I didn't understand where gluten could "hide" in foods.  But people on this forum helped me understand that cross-contamination matters, and a dirty toaster can really get ya, and you do have to learn to eat differently.  It helped a lot that my body confirmed what they were saying.

I think a lot of the adjustment to eating gluten-free is learning new eating habits.  People are used to eating whatever they want, whenever they want it.  Going gluten-free you have to learn to eat what is safe, when you can get it.  And if you can't eat safely, don't eat.  Practically, that means people have to learn to plan ahead and bring food with them or research safe places to eat ahead of time.  It can seem complicated at first to have to check every single thing before eating it.  But after a while you learn how to eat safely.  It's a big adjustment for many people, but people can learn new things once in a while. They do tend to make mistakes during the learning process though.

After a while the gluten-free diet is the norm instead of the new thing, and it is easier to eat gluten-free.  People do get used to it.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#48 ItchyAbby

 
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Posted 30 September 2013 - 06:58 AM

...cheating is never an option when you have Celiac Disease. 
 
That's exactly how I feel. Once I knew my torturer's name was Gluten, the idea of ingesting it just seemed abhorrent. I also had the advantage of having lived with my gluten intolerant S.O. for three years - our house was already gluten free and he was vigilant about not eating gluten when we went out (he is self diagnosed - his mother has Celiac).  So, before my dx, eating gluten was just an occasional thing, anyway.

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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#49 moosemalibu

 
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Posted 30 September 2013 - 08:40 AM

I take it very seriously. I'm still new and learning but I definitely avoid gluten, make my own meals and read labels. My boyfriend also let me make the house gluten-free and he is gluten-free when at home. He brushes his teeth when he comes home from work and we are all good.

 

I think my mom has celiac disease (based on her eosinophilic esophagitis, hypothyroidism, joint pain, the list goes on) and I tell her to get tested. She said she doesn't want to know because she doesn't want to give up gluten! What the what?! If you didn't have to go get your esophagus dilated every 6 months and you could swallow your food wouldn't you want to quit the gluten? I have finally convinced her to get tested when she goes to see her throat specialist. But she refused to make a separate appointment to get tested for Celiac's. My family thinks I am on a crusade of fear tactics but I want them to be healthy. It is a hereditary disease, I'm not making this up! I had to get it from someone. And my aunt is Celiac (my mom's sister). So the likelihood is high that my mom is too. She doesn't have the GI symptoms but that doesn't mean she doesn't have it, right?! Am I crazy? Am I pushy? So be it.


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Jamie


"We can't help everyone, but everyone can help someone." Ronald Reagan

  • Diagnosed Celiac via blood test 8-22-13
  • Dairy & gluten free in 8-22-13 then did gluten challenge in October
  • Endoscopy/Biopsy Oct-26-13 positive for Celiac
  • HLA-DQ2 positive
  • Vitamin D insufficiency 12-6-13 (had it prior no doubt, just wasn't checked until December)
  • Dairy Added back in successfully 3-1-14
  • Normal Antibody Levels 3-19-14! 
  • Egg, sugar alcohols Intolerant 5-2014

Supplements: Fish Oil, Digestive enzymes, probiotics, biotin, multivitamin, joint supplement, psyllium husk

Celiac.com - Celiac Disease Board Moderator


#50 Pegleg84

 
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Posted 30 September 2013 - 09:37 AM

(Great thread, guys!)

 

My first encounter with Celiac Disease was my aunt, who was diagnosed while battling thyroid cancer that was likely caused by years of undiagnosed Celiac, so yeah, I knew the risks were big from the get-go. Even though I wasn't officially diagnosed, the fact that it's so prevalent on both sides of my family gives me no doubt that I have it, and I have treated myself as having Celiac since the first week I went on the gluten-free diet and said WOW do I feel better.

 

I've always taken it seriously, but in the early days it was hard to know what "serious" meant. This forum has been the single best resource and I don't know what I would do without it. I'd probably still be using my old cutting board, eating out willy-nilly, and kissing my beer-loving boyfriend between swigs. Once I really buckled down, it made all the difference.

 

I never "cheated" in the sense of deliberately deciding to eat something gluteny, but I have made ignorant mistakes by not asking enough questions or deciding to take a risk that the shared fryer wouldn't get me. No more of that for me. Also, the blank "Gluten? What?" stare is now a sign to back out of the restaurant. I've become more sensitive over the years, so CC often comes back to bite me in the arse. For me these days, gluten isn't a problem. Avoiding gluten is the easy part. It's my intolerance to soy that's a complete pain in the arse and much more limiting.

 

I've stuck around the forum because I still need help sometimes, and want to give back with advice for those still finding their way.

 

Oh, and a "debunked gluten myths" sticky post would be a great idea, or something added to the Newbie 101. I know I thought there was something to the cross-reactivity idea until someone pointed to the Chicago celiac disease centre stating it was bunk.
(Just a note, though, that I was unknowingly using shampoo with hydrolized wheat protein for months, and it might not have had much of an effect, but I swear I'm doing a little bit better since I switched. Might just be in my head, but better safe than sorry.)

 

BIG HUGS TO ALL! (and coffee cake)


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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#51 Salax

 
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Posted 30 September 2013 - 10:39 AM

I take it very seriously. It is a disease, not an "I have it sometimes" illness. The Cold or Flu can go away, celiac doesn't. So it's important to consider ramifcations when "ignoring" a disgnosed disease. Although I get fear tactics may not work on everyone, for me it was either  I love being in pain and constantly sick or I don't. So, I don't and something as simple as removing something from your diet to feel better.....jeez thats easy. No treatments, no drugs, no surgerys.

 

I always say, "either your in enough pain to do something to heal yourself or not. if your not, then it must not be that bad, if it isn't that bad, then quit complaining." B)


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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!





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