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):

    Celiac.com Sponsor (A1-M):

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

What Can I Get Away With?

JAS2

By JAS2
in Coping with Celiac Disease

Recommended Posts

JAS2 Rookie
JAS2
Posted

I have not been diagnosed with with celiac, but suspect I am at least gluten sensitive. I am debating getting the test, but after being gluten free for 2 weeks and feeling a bit better I really don't want to go back. Also I hate forking out the money. I am wondering, if I do have celiac and ingest small amounts of gluten is it doing a lot of damage to my body even if I do not get any symptoms? Can some people with celiac get away with trace amounts or the occasional mistake?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Adalaide Mentor
Adalaide
Posted

If it is celiac, the simple answer is that no amount of gluten is ever okay to consume, regardless of whether or not it causes you distress. The more complicated answer is that some people are far more sensitive than others to the least bit of cross contamination and while the 20 ppm rule may be fine for some, only foods from dedicated gluten free facilities work for others. While learning the ropes you will make the occasional mistake, that is an absolute given. Over time this will happen less and less often. There is never need to berate yourself for a mistake, but you should also never let your guard down or never give yourself license to make a mistake. There is no such thing as a harmless taste, just a lick, or a quick nibble. Your new motto in life is every label, every time. And to answer the question, yes, even small amounts of gluten are doing damage to your body if you have celiac. Even if it isn't, studies are new on NCGI and little is known and it is equally important to be just as careful because it is possible that the stakes are just as high and we simply have no scientific evidence of that yet.

mushroom Proficient
mushroom
Posted

It is unfortunate that you cannot tell from your symptoms how much damage gluten is doing to your body. There are people who have no noticeable symptoms, yet whose intestinal lining has been totally destroyed. Others have the worst symptoms, and test negative for celiac :unsure:

Any amount of gluten that keeps the body producing gluten antibodies is going to cause damage, so people who cheat, especially those who do not know whether or not they are celiac, are playing Russian roulette with their bodies. We are all going to make an occasional mistake on the gluten free diet, and we will all pay some kind of price for that mistake. As long as the mistakes are minimal it shouldn't make too much difference.

Now, as for the diagnosis, it is tricky at best, and after two weeks gluten free you would probably have to do a pretty reasonable challenge to have a chance at accurate results. If you are gluten sensitive, you need to eat gluten free anyway, no matter the diagnosis, because not enough is yet known about what gluten does to those who have a non-celiac gluten intolerance.

Welcome to the boards and fire away with any other questions you have.

ETA: cross-posted with Adalaide :)

GFinDC Veteran
GFinDC
Posted

Hi JAS2,

That's one of the advantages of getting diagnosed with celiac, you do know it is a serious disorder. Celiac is an auto-immune condition, which means the body creates an immune system response to it's own tissues. Those immune system antibodie cells stay active for a while, and they keep attacking the body. They don't disappear the day after you eat some gluten. Think of measles. You get a shot as a kid and you have immunity for life. The body has that information on how to fight measles stored and ready to go all the time. If it didn't you would get measles every year or more often. Your immune system is like an elephant, it doesn't forget. It also reacts to very small amounts of something. Measles germs aren't very big are they? You have probably never seen one. gluten is small also, but when you eat something with gluten you are eating millions of protein fragments that your immune system reacts to. It won't slip by undetected if you have celiac.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. PixieSticks
      - PixieSticks replied to PixieSticks's topic in Super Sensitive People
      2

      Working in a kitchen with gluten?

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply.
    2. BoiseNic
      - BoiseNic replied to BoiseNic's topic in Dermatitis Herpetiformis
      11

      Skinesa

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It...
    3. knitty kitty
      - knitty kitty replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Feeling ill

      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches. Really works well without hurting the digestive tract. Riboflavin B2 also helps with migraines. Most newly diagnosed people have vitamin and mineral deficiencies. Check with your doctor and nutritionist. If you follow the updated...
    4. Scott Adams
      - Scott Adams replied to Brianne03's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Advantages vs. Disadvantages of having an official Celiac diagnosis

      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    5. Scott Adams
      - Scott Adams replied to Whyz's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Feeling ill

      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity. Approximately 10x more people have non-celiac gluten sensitivity...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,536
    • Most Online (within 30 mins)
      7,748
    Annette Smith
    Newest Member
    Annette Smith
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • PixieSticks
      Working in a kitchen with gluten?

      By PixieSticks · Posted

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply. 
    • BoiseNic
      Skinesa

      By BoiseNic · Posted

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
    • knitty kitty
      Feeling ill

      By knitty kitty · Posted

      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
    • Scott Adams
      Advantages vs. Disadvantages of having an official Celiac diagnosis

      By Scott Adams · Posted

      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    • Scott Adams
      Feeling ill

      By Scott Adams · Posted

      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
×
×
  • Create New...