Jump to content
  • 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

Trying To Understand Cc Danger.


Imanistj

Recommended Posts

Imanistj Contributor

I am trying to figure out CC if we really can never be totally gluten-free. I have read, and I agree with the idea, that no matter how careful we are, we are going to encounter gluten that we can't control or even anticipate. We live in a gluten filled environment and I am certain we inhale tiny amounts or contaminate ourselves by touching surfaces onto which other people have deposited traces of gluten. OK, I constantly read that a mere crumb is enough to set off antibodies against gluten. I have also read that the reaction isn't dose related and the antibody response seems to be all or nothing. That being said, if we really can't achieve total freedom from gluten, how is it that celiacs feel better following a gluten-free diet and many feel awful after being glutened. Aren't we constantly being glutened?


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



Celiac.com Sponsor (A8-M):



Juliebove Rising Star

It's true that we are surrounded by gluten but that doesn't mean you have to ingest it. Yes, every time you dine away from home or eat food that you didn't prepare, you run the risk of someone not understanding the diet and/or cross contamination. That's a given.

There are things you can do though. De-gluten your home. That means replacing various things in your kitchen where gluten may lurk and giving it a thorough cleaning. You may need to clean your car if you've had gluten in there.

Check all labels of stuff you bring into your home, including cosmetics. I found out I had been glutening my daughter because a product I was using on myself contained either oats or wheat (it has been several years now and I don't remember). Just that small amount that remained in the tub was enough to give her a rash. She doesn't have celiac but food allergies.

Remember to wash your hands prior to eating and if you can't, use some sort of wipe. I keep baby wipes in my vehicle and every room in my house. In my purse, I keep individually wrapped wipes.

jststric Contributor

I think reading the labels to everything you bring into the house is about as good as you are going to get with a purposeful attempt. I have never been bothered by anything topically....only things ingested till just last week. I used some lotion on my legs that has been around our house always. Never gave it a thought. My legs burned and itched like CRAZY and I looked at the ingredients and discovered there's a hazelnut oil in it and one of my food intolerances now is nuts! I would have NEVER thought about a lotion bothering me.

I do not expect my 19 yr old son or my husband to eat the way I need to and I do not expect them to always be aware of how they do things around MY house. If it affect ME, then I need to be the one to consider the dangers. They DO ask about skillets/pans that have been used and they are good at letting me know they've used something in one that I shouldn't have. I have had to buy my own toaster and they are good about staying away from it. Other than that, I clean my counters before putting my own foods out on it. I wash pans and utensils before using them on things for myself. A simple hot water and soap washing seems to be enough for me, for now, at least. I will need a much bigger kitchen if I ever have to have all my own pans and utensils, lol, and I don't see that happening anytime soon! : ) I also wash my hands ALOT and am aware what could be on my dishrags and dishtowels.

Imanistj Contributor

Avoiding gluten isn't really my question. I want to understand why the extraneous gluten that everyone encounters isn't enough to cause a reaction while a crumb of CC is. I'm not trying to argue; I just want to understand. My closest friend constantly challenges the idea that a crumb can trigger a response. I have explained that the response is autoimmune and different from a simple allergy. However, I can't resolve the issue of there always being some gluten in our lives that doesn

tarnalberry Community Regular

You're right - a celiac isn't going to be able to avoid every last molecule of gluten. And you're right - just about every molecule of gluten is going to cause a reaction in the intestines. BUT, my theory is this: if the damage caused by the infinitesimal 'contamination' we get is less than and slower than our body can heal it, the net effect is that we turn out "ok". It's a tax on the system, smaller of a tax the less contamination we get, but it's non-zero.

It's like clothing; you might be getting your clothes dirty every day, but you wash them often enough they're usually clean. If you get a lot of dirt on them, however, they're going to be obviously dirty, and it will be harder to clean them.

twe0708 Community Regular
Avoiding gluten isn't really my question. I want to understand why the extraneous gluten that everyone encounters isn't enough to cause a reaction while a crumb of CC is. I'm not trying to argue; I just want to understand. My closest friend constantly challenges the idea that a crumb can trigger a response. I have explained that the response is autoimmune and different from a simple allergy. However, I can't resolve the issue of there always being some gluten in our lives that doesn
princessjessie Newbie
It's like clothing; you might be getting your clothes dirty every day, but you wash them often enough they're usually clean. If you get a lot of dirt on them, however, they're going to be obviously dirty, and it will be harder to clean them.

good analogy. this definatly makes me understand this topic a bit more.


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular
good analogy. this definatly makes me understand this topic a bit more.

It's worth noting that if you're trying to keep your clothing clean, you try to avoid dirt. Same way here - if you're trying to avoid being unhealthy and sick, you try to avoid gluten. But does that mean that I send my husband to the grocery store because they stock wheat bread, instead of going myself? No. Maybe there's an infinitesimal risk of contamination there, but I think it's below the "healing" threshold. (And, worth noting here: some people *do* avoid the bread aisle, because they feel they have gotten sick from it. Exactly what the threshold is... probably varies from person to person.)

StacyA Enthusiast

Touching gluten is not the same as ingesting gluten. Gluten has to get to the intestines to cause the autoimmune response (ie via the mouth/swallowing.)

Similarly - HIV has to get into the bloodstream for you to contract the virus. Don't try this at home, but if your skin is fully intact (no scratches, hangnails, ect) you can stick your hand in blood with HIV and not contract the virus.

Although yes, you'll read about some reports of skin absorption of gluten - but that's not terribly common.

ravenwoodglass Mentor
Touching gluten is not the same as ingesting gluten. Gluten has to get to the intestines to cause the autoimmune response (ie via the mouth/swallowing.)

Similarly - HIV has to get into the bloodstream for you to contract the virus. Don't try this at home, but if your skin is fully intact (no scratches, hangnails, ect) you can stick your hand in blood with HIV and not contract the virus.

Although yes, you'll read about some reports of skin absorption of gluten - but that's not terribly common.

Actually gluten just has to come into contact with a mucous membrane to be introduced into the blood stream. That is why in some countries instead of poisoning suspected celiacs a cheek or rectal suppository is used and then the area is biopsied a couple of hours later. A much more humane way of testing than used here in the US IMHO.

If we use a gluten lotion on our hands and then we eat some finger food or rub our eyes or noses it is possible to start the antibody reaction. That is why some of us are zero tolerance folks and avoid it in our toiletries as well as our food.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748

    yfuvhg
    Newest Member
    yfuvhg
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.