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 There A Chance

Gemme

By Gemme
in Coping with Celiac Disease

Recommended Posts

Gemme Rookie
Gemme
Posted

I am celiac and it is very difficult for me to be 100% Gluten free. If we have a scale from 1—100 , and I am consuming 1—3% hidden gluten, you think I am still recovering or I will have to be 100% Gluten free.wink.gif

Wishing you all a healthy life and speedy recovery. smile.gif

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

Celiac.com Sponsor (A8-M):


tom Contributor
tom
Posted

A celiac has to be 100% gluten-free.

Before I knew better I tried 98-99% gluten-free & an easy argument can be made that it led directly to wasted years of spiraling ill health - some aspects creeping in so slowly it's easy to blame aging or get into the mindset "this is just how it is, deal w/ it, everyone has problems" w/out realizing it's something else beyond that & WILL get worse.

Now .. ..where you say 1-3% hidden gluten, is that cross contamination or just not checking labels or asking restaurants questions?

kareng Grand Master
kareng
Posted

Here is info from 2 "experts" The Celiac Center in Chicago & the Celiac Center at Columbia. we can bombard you with more info from reputable sources, but they all say the same thing.

Open Original Shared Link

Gemme Rookie
Gemme
Posted
  • Author

A celiac has to be 100% gluten-free.

Before I knew better I tried 98-99% gluten-free & an easy argument can be made that it led directly to wasted years of spiraling ill health - some aspects creeping in so slowly it's easy to blame aging or get into the mindset "this is just how it is, deal w/ it, everyone has problems" w/out realizing it's something else beyond that & WILL get worse.

Now .. ..where you say 1-3% hidden gluten, is that cross contamination or just not checking labels or asking restaurants questions?

Yes it is hidden gluten, cross contamination, i do all i can, but every few days i find a new source of hidden or cc.

Thank you for time n reply

Gemme Rookie
Gemme
Posted
  • Author

Here is info from 2 "experts" The Celiac Center in Chicago & the Celiac Center at Columbia. we can bombard you with more info from reputable sources, but they all say the same thing.

Open Original Shared Link

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms."

Open Original Shared Link

"Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis. "

Thank you.

GFinDC Veteran
GFinDC
Posted

Hi Gemme,

The immune system reactions can last for weeks. The immune cells get spun up for an attack and don't disappear and go back to the bunker for card playing and drinking in just a day. They stay vigilant for new invaders and ready to fight. So if you are constantly feeding them little bits of gluten they are always going to be active.

Chad Sines Rising Star
Chad Sines
Posted

Is anyone ever truly 100% gluten-free with all the concerns of cross contamination? Even the lower ppm limits have limitations in what can be tested for. I am not advocating for adding gluten to the diet of course, but the fact that some go medical freakout on CC and others do not, seems to shows a discussable area as to how much is okay. 1 ppm, 0.5.... Even the terms like super sensitive seem to reinforce this a bit. It all could be that each just has a different GI with varying degrees of damage, but it appears that some long-term gluten-free are still super sensitive.

Does anyone ever get to that 6-mo, 1 year, 2-year purely gluten-free with no exposure? Is that even possible?

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

Is anyone ever truly 100% gluten-free with all the concerns of cross contamination? Even the lower ppm limits have limitations in what can be tested for. I am not advocating for adding gluten to the diet of course, but the fact that some go medical freakout on CC and others do not, seems to shows a discussable area as to how much is okay. 1 ppm, 0.5.... Even the terms like super sensitive seem to reinforce this a bit. It all could be that each just has a different GI with varying degrees of damage, but it appears that some long-term gluten-free are still super sensitive.

Does anyone ever get to that 6-mo, 1 year, 2-year purely gluten-free with no exposure? Is that even possible?

I think if a person bases their diet on whole foods, with some goodies and bread thrown in (preferably from dedicated, certified facilities) without overdoing it, then they should feel confident that they are as gluten free as it gets. You can never say with absolute absurdness that you are 100% gluten free....no one can prove that. Just like no one can prove that any given gluten-free mix is contaminated with minute amounts of gluten just because they think so.

I am extremely sensitive and get sick from very small amounts but I manage to be healthy, with no symptoms anymore from eating a careful gluten-free diet. I do eat cookies and brownies occasionally but most always choose dedicated facilities and I have never gotten sick from them. I have had problems with shared facilities, though. The only time I seem to sustain a hit is when I travel but that is usually just one time and then I seem to do fine. Travel is hard but it can be done. I go very long periods of time with no glutening episodes but do not eat out all that much and I am careful where I go. That can be hard for people to do but I think it essential to keep yourself from taking a hit. If you eat at home most of the time, once you learn the ropes, it should not be too hard to keep yourself well. It's still a crap shoot but it is possible....I feel I live a very normal life. It's the rest of the people that eat weird, not me! ;)

Persei V. Enthusiast
Persei V.
Posted

Not likely. I know I am not in a 100% gluten free diet, as I am still trying to figure out what I can eat, and what I can't. Recently I made a corn cake I was sure it was completely gluten-free because it was made at home and I cleaned the utensils thorougly before using.

Guess again.

Glutenated. And I'm feeling really bad right now, even though I had it 2 days ago and have been eating only safe foods since then. Even had a headache, something I've never had before from ingesting gluten.

Processed foods always come with a bit, at least in my area, because there are no gluten free facilities (I kind of have to trust on their words it's gluten free, then see it for myself <_< ). So... If one has a completely gluten-free kitchen and eats only home made foods, I think one has a 100% gluten-free diet.

If not...

NGG Newbie
NGG
Posted

I've only been gluten-free for a few months, and I really try, but I sometimes get hit without knowing where it came from. The first thing I feel is a huge wave of fatigue and like a mental fogginess. I was worried at one point I could be narcoleptic or something. It's horrible and difficult to concentrate even to drive, so I just don't go to restaurants anymore if I have to drive. There's too great a chance I'll get like that. I don't always get sick to my stomach, but if I do, again, sometimes it hits while I'm in the car and it's difficult to concentrate if I'm driving. (Road safety is a big deal for me.) So basically I'll occasonally go out to eat with my family or just my husband if my husband drives but I don't get food out otherwise.

So the answer for me is that I haven't yet managed, and eating out (not as much if there is an actual gluten-free menu) is the trickiest. I haven't gone to a place that doesn't have some kind of policy or statement about gluten in a while. Those that either have a gluten-free menu or publish their allergen menu seem less problematic to me, at least in my limited experience so far.

1974girl Enthusiast
1974girl
Posted

I don't believe it is possible to be 100% gluten free unless you live in a bubble. Just the sheer number of cc threads on here show that! (and your body doesn't know if you did it on purpose or not!). My dd accidentally popped a butterfinger mini ( the unwrapped kind) from her sister because she thought butterfingers were gluten-free. Sister immediately told her they had wheat in them and she spit it out. But I know it went in. I also have no idea if the restaurants are doing a good job even with a gluten-free menu. My dd lives a normal life, goes to grandparents house and eats, we eat out once a week. She has normal antibodies within 6 months. We are doing the very best we can and the doctor said she would live to make a video of us to show it can be done with kids. But she lives normal and I am sure something sneaks in but without symptoms, we'd never know without a scope every year.

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. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    2. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    3. knitty kitty
      - 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.

      @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...
    4. Jane02
      - 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.

      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...
    5. knitty kitty
      - 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.

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

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

      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?
×
×
  • 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.