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

Is Avoiding All Gluten Possible?


wakefulwife

Recommended Posts

wakefulwife Newbie

I am looking for wisdom and feeling frustrated. I have a biopsy confirmed diagnosis as of May. For years I thought that I had gall stones, but they could never find any. I get awful stomach cramps when eating eggs or other concentrated fat foods. It had gotten to the point that my stomach hurt whenever I ate, and I was anemic, I thought from donating blood too frequently. When my father was diagnosed in March, I had the biopsy. I have been feeling much better since going gluten-free, but I never really reacted much to gluten anyway. Still can't eat eggs, but it is not as bad, and only have serious anemia symptoms when I have my period. My concern now is cross-contamination. How much of a risk is it? How do I know if I am avoiding gluten completely if I am not reactive to it? I still eat out, and do my best to avoid gluten. I try to be careful in food prep, but no one else in my family is going gluten-free. I wonder if it is possible to avoid all gluten? If I am non-reactive, is there some other way to tell if I am being successful? I never had the blood test, just went straight to the endoscopy. Would have never guessed in a million years that my issues were gluten related if my very reactive father had not been diagnosed.

Also, I could sure use a good Doctor and dietitian in the Oklahoma City area. Just moved here form MD and my GI Dr in Maryland was not very helpful. I was told to take a multi-vitamin and avoid all gluten. Easier said than done I am finding.


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



Celiac.com Sponsor (A8-M):



MySuicidalTurtle Enthusiast

Were those foods you were eating when you felt bad containing gluten and eggs? Celiac Disease has so many symptoms from headaches,r ashes, vomiting, etc., that you could have had many and not thought they were related. You can be gluten-free if you try and get used to your diet. It takes awhile to get used to and you'll be better off on it. Plus, you could have complications and a compromised immune system if you continue eating it.

Good luck and you'll find this site is a great resource!

wakefulwife Newbie
Were those foods you were eating when you felt bad containing gluten and eggs? Celiac Disease has so many symptoms from headaches,r ashes, vomiting, etc., that you could have had many and not thought they were related. You can be gluten-free if you try and get used to your diet. It takes awhile to get used to and you'll be better off on it. Plus, you could have complications and a compromised immune system if you continue eating it.

Good luck and you'll find this site is a great resource!

Yes, I was eating gluten when I was sick. I have no doubt that was the problem. My question is, since I do not have an immediately discernible reaction to gluten, how can I tell if I have successfully avoided cross-contamination? How big a risk is it? I live in OK, surrounded by wheat fields and grain elevators. Do I need to be concerned about making sandwiches for my kids? Do I need to throw out my makeup? It seems like there is no way eliminate all gluten from your world. What happens if I accidentally ingest gluten? Have I undone all the healing to my system. I wish that I became violently ill when I was exposed to it, at least I would know and be able to avoid the contamination. I feel great now that I am off the gluten, but I suspect that I may still be coming in contact with it to some degree. I do not Clorox the whole kitchen after I make a sandwich for the kids.

mushroom Proficient

You have to be a detective to remain gluten free; that is, you have to be really conscientious about reading every label; and thinking about every thing you put in your mouth. I catch my husband (who has DH) in unconscious eating sometimes and can't believe he is so careless. But it takes quite a bit of gluten for him to react. We are all diferent in our levels of conscious tolerance, but that does not mean that harm is not being done by the unconscious eating with no apparent consequences. So all I can advise is to be as aware as possible about what you consume; that is all any of us can do.

It is possible to avoid all gluten; most of us do it 99.5 % of the time; however, living with gluten eating peoples makes it more complicated. You have to have our own utensils and frying pans and toaster, your own jars of spread, and your own storage and preparation areas, and have your rooommates respect these no-go areas in order for this to work. Good luck on your gluten free journey.

wakefulwife Newbie
You have to be a detective to remain gluten free; that is, you have to be really conscientious about reading every label; and thinking about every thing you put in your mouth. I catch my husband (who has DH) in unconscious eating sometimes and can't believe he is so careless. But it takes quite a bit of gluten for him to react. We are all diferent in our levels of conscious tolerance, but that does not mean that harm is not being done by the unconscious eating with no apparent consequences. So all I can advise is to be as aware as possible about what you consume; that is all any of us can do.

It is possible to avoid all gluten; most of us do it 99.5 % of the time; however, living with gluten eating peoples makes it more complicated. You have to have our own utensils and frying pans and toaster, your own jars of spread, and your own storage and preparation areas, and have your rooommates respect these no-go areas in order for this to work. Good luck on your gluten free journey.

Is a 4 slice toaster sufficient if two slices are dedicated to gluten-free food, or do I have to have a completely separate one?

ang1e0251 Contributor

You need your own toaster. You really cannot control the crumb factor. Making the kid's sandwiches only requires you to prep them on a paper towel then fold in the crumbs and throw away. Then wash your hands. Don't freak out just be concious of gluten. None of us are perfect, so we just have to go with our best effort. At some point you may want to test again to see if your damage shows improvement. My guess it is has since you're feeling better.

lovegrov Collaborator

If you eat out or eat processed foods or live with somebody who isn't gluten-free, then , no, you cannot avoid ALL gluten. You will get some somewhere. Even people who are more sensitive probably get tiny amounts without knowing it unless they avoid all of the above. BUT, you can avoid it the vast majority of the time -- and for most of us that's what we need to do.

richard


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



Celiac.com Sponsor (A8-M):



wakefulwife Newbie
If you eat out or eat processed foods or live with somebody who isn't gluten-free, then , no, you cannot avoid ALL gluten. You will get some somewhere. Even people who are more sensitive probably get tiny amounts without knowing it unless they avoid all of the above. BUT, you can avoid it the vast majority of the time -- and for most of us that's what we need to do.

richard

Thanks, that is helpful. I just gets a bit overwhelming. It is such a radical life-style change. Found out yesterday that there is wheat oil in my favorite lip balm and sunscreen. Both rather pricey. DARN. So despite all my hard work in trying to remain vigilant, I probably still exposed anyway. ARGH!

Archived

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

  • 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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748

    Nicolah
    Newest Member
    Nicolah
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.