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

Slide Way Off The Wagon


dbuhl79

Recommended Posts

dbuhl79 Contributor

So, I slipped off the wagon, a few times now. Even with constant reminders from my fiance, future-in-laws, etc, that "you can't have that..". But I do, and guess what, I don't always have symptoms, so the next day I eat it again.. and then I suffer. So I figure I'd come here for a pep talk or a lecture from my dearest gluten-free friends!

I guess the toughest part is, the reality that no tests have shown I have celiac disease, but yet the only consistent thing is eating it makes causes digestive upset/sickness for me. Then in moments of weakness I use this as my defense when I indulge on home made bread, or brownies or something of that nature. Its difficult for as the bread lover that I am. gluten-free Bread just isn't quite the same..

Thanks for any supportive commentary any of you can offer... I need a reality check.


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

Do you know for sure if you have celiac? If you think you do I would suggest find a knowledgable doctor in celiac where you live. If you do have celiac even if you don't have symptoms this ruins your intestine. This may also increase your risk of developing cancer down the road. This can lead to not only cancer but other very serious conditions. By ignoring the gluten-free diet is like setting your date to die. It is very serious.

Nobody can control you they can try to help you but only you have the power to make the change.

You have to give it time for all of the symptoms to go away. I highly recommend probiotics and enzymes if you are not on those already they help to absorb food and digest . There are also many things you can take to calm the stomach.

I have some wonderful recommendations for bread that tastes normal. There are english muffins both plain and cinnamon that taste incredible toasted. There are wonderful gluten free foods out there. I had to go through quite a number of crappy ones to find the good ones. If you need the brands of these foods let me know I would be happy to help you. Good luck :D

Guest gillian502

The first thing to do is to confirm or rule out if you have this disease. Time could be wasting for you if you're assuming you have one thing when in fact you have another. If you do not have celiac disease, but just happen to feel better off gluten, then great, cut out gluten for the most part but indulge upon occasion if in fact you have no reason not to. First things first, though...see a knowlegable doctor and get a reliable answer.

dbuhl79 Contributor

I've been through the mill of doctors and specialists. None confirming I have celiac. Nor anything else. So its pretty much left to "gee if hurts then don't do that." basis. Trust me.. I just need to get my rear in gear an dback on the wagon. I am sure I suffer from an sensitivty to gluten/wheat if nothing else..

KaitiUSA Enthusiast

If might want to do enterolab or york lab testing.

If you feel better of of gluten listen to your body..your body tells you more than any doctor could tell you.

I would try to get something confirmed whether it is an allergy or if it is infact celiac disease or something else.

jknnej Collaborator

Kaiti,

What kind of digestive enzymes do you take and where can I get them?

KaitiUSA Enthusiast

Jknnej-I take Enzymatic Therapy enzymes called CompleteGest. On their bottles they put what they are free of so I like that brand. Alot of their supplements I use because of that. They have really good Probiotics too.

I get them at Whole Foods, Roots, or Vitamin Shoppe. You can pretty much get them at the health food stores around. If you can't find them let me know and I can give you a link on where to order them. :D


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



Celiac.com Sponsor (A8-M):



jknnej Collaborator

Thanks, I'll look for those this weekend. I'm freaking out because I just licked an envelope and I really hope it's gluten-free...what do you think?

For the person who wrote the sliding off the wagon, I say, find a great whole foods store. I started buying wonderful mixes for cookies and breads and they taste every bit as good as the regular stuff. Even my non celiac disease hubby loves them.

You have to be patient with yourself but also strict in terms of will power. Take a look at the mainstream product list; there are SO many good foods that are gluten-free; stuff you'd never think was in a million years. Keep at it and don't get discouraged.

KaitiUSA Enthusiast

Jknnej-I have always been told that envelopes are not safe to lick because of whatever is in it to make it stick. Also, most stickers I have heard have gluten in their adhesive. If you use the ones you have to lick I would recommend using a wet paper towel or something. I wash my hands even after using the peel and stick ones just to be extra cautious.

darlindeb25 Collaborator

dubhl79---only you can make you listen--we can talk and talk to you but until you want to feel good, then it wont happen--it's dicision you have to make by yourself---i was so sick that once i went gluten-free, i never once cheated on purpose--not one time--i have been glutened, that will happen to all of us, but i do not cheat--if i doubt, then it dont go in my mouth--it's that simple and i have been gluten-free now for over 3 1/2 years--4 yrs in july--it's up to you--keep at it---dont let the gluten monster take over your mind :ph34r: ---deb

oh yeah--i never lick envelopes--at work they found me a glue stick to use or i tape them shut--i never lick envelopes-- :P

rmmadden Contributor

I am somewhat similar in that before I was diagnosed with celiac disease I could eat pasta or other gluteneous food and feel fine. The next day I would eat the pasta, etc. for lunch at work and then feel lousy. It was always the second day that got me.

Now that I have been diagnosed I have been gluten-free for the past 2-months. It just isn't worth the risk of potential damage to my intestines and the associated lousy feeling for me to go back and eat gluten (or cheat). Ask yourself when your feeling lousy if what you ate was worth it? I think most celiac disease patients would say "NO".

Best of luck!

Cleveland Bob :)

stef-the-kicking-cuty Enthusiast

dbuhl79 - I think, if there are celiacs out there, who don't have symptoms with eating gluten-free. And there are celiacs who have symptoms. Why not be one of the celiacs, who sometimes have symptoms and sometimes not? If it only hurts you sometimes, that shows you, that it definitely hurts you. Even if not all the time. Just stick to the diet, getting hurt is not worth it. And there are a lot of tasty breads and pizze and stuff for us celiacs out there. You just have to find the right ones for you :) .

Hugs, Stef

dbuhl79 Contributor

Thanks folks!

Stef, its just a matter of stupidity really. :) I've made a new commitment to myself this weekend that it was the end of my misbehaving. I'd gotten so sick and spoiled a pleasant time. I'm tired of being unable to go out without having the black cloud over my head of anticipated stomach pain, bathroom runs, or fatigue. Thanks for the pep talks.

Deb,

Hey great tip about the envelopes, that never occured to me!

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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.