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

Glutened

lonewolf

By lonewolf
in Coping with Celiac Disease

Recommended Posts

lonewolf Collaborator
lonewolf
Posted

Okay, this might seem silly to all of you who understand being "glutened", but I have been reading your posts for about 6 weeks now and keep thinking that you are all very sensitive, because I don't react that strongly to ingesting gluten. I had enough symptoms to make me realize that I needed to go gluten free, but I just couldn't relate to being glutened. Until yesterday. Maybe starting Wednesday night. We went to the Outback, I ordered from the gluten-free menu. Everything seemed fine. I woke up at about 2:00 am with a bad stomach ache and gas (this had actually started earlier). Finally went back to sleep and didn't think too much of it, but wondered if the meal had been contaminated somehow. Yesterday the kids and I tore into the Christmas gingerbread house and I tried a "Lego" candy that my son had built a fireplace with. Only ate one because I realized after eating it that it was the only candy that I wasn't sure about being gluten-free. A couple of hours later I was in total agony - gas pain, stomach pain - almost doubled over. "D" would have been a big relief. This lasted for several hours, this morning I just feel nauseated. I don't know if it was the meal or the candy or a combination of both, but this has convinced me to be even more careful. By the way, I've had this same problem dozens of times over the past several years and never realized it was related to gluten. I guess I'm a slow learner. (I've only been completely gluten-free for about 6 weeks now.)

Liz

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Hi Liz--Sorry you had to go through that. Possibly, you are becoming more sensitive to gluten the longer you are off of it. Thats what happened to me and a lot of others here. Since you've only been gluten-free for 6 weeks, this sounds just about right. I'm 7 mo. gluten-free and have become highly sensitive. I have to be very careful of CC issues. As time goes on, you have to be diligent about keeping the gluten out and be aware that symptoms and sensitivities can change. I really hope you feel better soon :)

jenvan Collaborator
jenvan
Posted

Liz-

Hey ! You aren't a slow learner :) Its more that there is so much info to know! It is interesting b/c people have such varied reactions...some of us don't even have much of a noticeable reaction immediately after getting gluten either. It sounds like you might have come in contact with some contamination. Had your son handled that lego after handling other materials? Did you use the typical graham crackers to assemble? Thinking back and analyzing what you've come in contact with to find the source is important. (I do also believe that not every GI issue symptom we experience may be related to gluten. Sometimes its another food intolerance or a combination of foods or even perhaps the flu...) Hope you feel better soon!

lonewolf Collaborator
lonewolf
Posted
  • Author
Did you use the typical graham crackers to assemble? Thinking back and analyzing what you've come in contact with to find the source is important. (I do also believe that not every GI issue symptom we experience may be related to gluten. Sometimes its another food intolerance or a combination of foods or even perhaps the flu...) Hope you feel better soon!

The gingerbread house was 100% gluten-free - made it from scratch. The only candy that I wasn't sure about was the little candy lego bricks, and of course I ate one without thinking first. I agree that not every GI issue is gluten related, but I know for sure I haven't had any eggs, soy or milk (the other things I don't eat). It might have been a delayed reaction from the Outback, but there's no way to know for sure. I have eaten VERY little gluten during the past 10 years, just a few stints of trying spelt and barley and not being careful with hidden glutens and cross-contamination. But I have had, like I said, dozens (maybe hundreds?) of these episodes. I hadn't had any troubles at all since going completely gluten-free right before Thanksgiving and I actually have cheated with eggs (in cookies). So this is why I think it was gluten related. I'm not going to do a trial on myself though, just think I'll be extra careful. I'm feeling a lot better already.

Liz

jenvan Collaborator
jenvan
Posted

oh okay...i wasn't sure if you bought a premade kit or did from scratch--good for you making that! so you are now completely gluten-free, post thanksgiving? since you've been good since then, seems like the contamination is likely. sometimes i feel like eating out will always be a gamble. ! so are you attributing all those other episodes to contamination too, before you went gluten-free? i couldn't tell from your post...but it seemed like you were getting a gluten fairly frequently? hopefully this time things will stick and those issues will all but disappear! btw, i have a delayed reaction to gluten...not one of those who notice instant symptoms...more like a day or two later.

Becky6 Enthusiast
Becky6
Posted

I am sorry! I have been gluten-free about a month now and something got me earlier this week and I am not sure what! But I got my old grumbling tummy back and awful gas. I also got a headache and felt awful! Since then I realized I really need to be careful and take no chances!

Archived

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

Go to topic listing
  • 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):

  • Upcoming Events

  • Posts

    • lil-oly
      Gluten tester

      By lil-oly · Posted

      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
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      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
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      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
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @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.