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Celiac Sensitivity?

Zozo16
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Zozo16 Rookie
Zozo16
Posted

Hi everyone! I am a complete newbie to the gluten-free diet and was diagnosed with Celiac disease just a couple of weeks ago. I have been hearing a lot about some people being more sensitive than others. For instance, you will need to see how sensitive you are to determine how much you need to worry about cross contamination. However, I thought that sensitivity doesn't apply to Celiacs? I thought that just any amount of gluten will trigger the attack and damage your intestine. i do not really care about the symptoms, I am more worried about destroying my gut. So, does sensitivity apply to how much it takes to start the destruction? Or, is that just in reference to your symptoms? I am so confused. I just want to cut enough gluten out to stop the attack. I thought it was all or nothing. Thoughts? 

Oh, and I have also been told that my boyfriend has to brush his teeth, floss, and mouthwash before kissing me. Is that taking it too far, or necessary? Once again, people bring up sensitivity. Thanks!!

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cyclinglady Grand Master
cyclinglady
Posted

Welcome to the forum.  

Yes, it's true.  You should have your boyfriend brush and floss before you kiss!

Science has determined that celiacs can handle about 20 parts per milllion (size of a crumb) before setting off a reaction.  Remember, celiac disease is an autoimmune disease that is triggered by gluten.  Once triggered, your body will start to attack your small intestine.  For some it's just a few weeks.  For others, it can take months for the "flare-up" to stop.  We are lucky in a way, because those who have MS, RA or lupus do not know what triggers their flare-ups at all!  

Here's some "real world" information.  I got glutened last July and I still do not know what got me!  Six weeks later after the initial glutenting, my GI tested my antibodies and they were sky high.  It took three months to finally feel normal and another three to gain back lost weight!  

You should check out our Newbie 101 section under "Coping".  It contains lots of valuable tips.  Cross contamination is a real issue for celiacs.  

I recommend that you stick with whole naturally gluten free foods and avoid even processed gluten-free foods (or eating out)  until you have experienced some significant healing.  Be patient.  It can take months to years to heal!  You sound young, so you should heal fast!  

squirmingitch Veteran
squirmingitch
Posted

I'm going to amend cyclinglady's comment:

Science has determined that MOST celiacs can handle about 20 parts per milllion (size of a crumb) before setting off a reaction.

There are some who can't even handle the 20ppm. The FDA had to come up with some kind of a cut off point and 20ppm is what the final ruling was on labeling foods gluten free. That's great for the vast majority. If I were you, I wouldn't worry about being a "super sensitive" at this point. You just need to concentrate on learning the diet. There's a very steep learning curve to it. I would highly recommend you do not try to eat out for 6 months at least. Eating out safely is a whole other ball of wax. Learn how to eat safely with foods in your home before you go tackling the great big world of eating out.

When you are celiac, you always need to be wary of cross contamination. It really is all or nothing. 20ppm is a teeny, teeny, teeny, teeny amount.

Zozo16 Rookie
Zozo16
Posted
  • Author

Thank you for the great advice. That definitely helped clear up some of my confusion. Considering my super busy lifestyle, not eating out is probably not an option, but I am trying to cook my own meals as much as possible. 

  • 2 weeks later...
Gemini Experienced
Gemini
Posted
On June 13, 2016 at 10:43 AM, Zozo16 said:

Thank you for the great advice. That definitely helped clear up some of my confusion. Considering my super busy lifestyle, not eating out is probably not an option, but I am trying to cook my own meals as much as possible. 

For dining out, check out the website: http://Www.findmeglutenfree.com.  They list restaurants with gluten free menu's and options in your area and there are reviews from other celiacs on there to help you figure out the better, safe places to eat.  Great web site!  

Although it is optimal to not dine out at first, reality sometimes gets in the way.  I had booked a trip months before I got really sick and would have lost a lot of money if I did not go.  A month after diagnosis, I flew overseas and ate out for dinner only every night.  I ate plain foods but they were well prepared so still quite good. I never got sick.  I was careful and it worked. Luckily, Europe was way more gluten free knowledgeable than the US at that time and still is.  So, it can be done if you are very careful!

  • 1 year later...
Alison1234 Newbie
Alison1234
Posted

I want to kiss this boy with celiac, If I brush my teeth will he not get sick? I have not eaten gluten for 24 hours but I'm not sure about cross contamination. I kissed my now X a few hours ago.  Should i still kiss the boy or not eat gluten for another 24 hours?

cyclinglady Grand Master
cyclinglady
Posted
28 minutes ago, Alison1234 said:

I want to kiss this boy with celiac, If I brush my teeth will he not get sick? I have not eaten gluten for 24 hours but I'm not sure about cross contamination. I kissed my now X a few hours ago.  Should i still kiss the boy or not eat gluten for another 24 hours?

Brush your teeth after eating gluten and then you can kiss!  It is nice to be supportive though if you are out with him and just order something gluten free.  

It is so nice that you are such a caring person!  

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Alison1234 Newbie
Alison1234
Posted
17 hours ago, cyclinglady said:

Brush your teeth after eating gluten and then you can kiss!  It is nice to be supportive though if you are out with him and just order something gluten free.  

It is so nice that you are such a caring person!  

Thanks for your help!

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

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    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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