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

How Do I Know When Im Glutened?

jasonD2

By jasonD2
in Coping with Celiac Disease

Recommended Posts

jasonD2 Experienced
jasonD2
Posted

Honestly I can never tell. Sometimes I get tingling in my legs but that doesnt happen frequently and since i have so many food sensitivities it really could be anything.

Last night I got some sorbet at a gelato place. The owner confirmed the sorbet is gluten free and after i got some tingling in my legs..not sure if it was gluten or something else

Tonight I ate at a Greek place that was listed on a gluten-free site. I told the waitress gluten free and even gave her my allergy card but i dont even know if the chef read it since she returned it seconds later. She was very kind and accommodating, but was my meal really gluten free? I ordered a plain salad, lamb chops and some steamed broccoli. the lamb was broiled and had some kind of crust on it..not like it was breaded but there was something charred and crusty on the top. im assuming it was ok since she told me they can do any meat or fish gluten-free but i forgot to tell her to leave any marinades off. Not sure if there was anything else i coulda done.

eating out has become much easier for me and im defly not as neurotic about ordering gluten-free anymore, but its still a minefield out there and since i dont get severe symptoms from CC i just never really know whats safe or not and i cant very well get an enterolab sool Ab test after every meal.

How do you guys deal with this? specifically those of you who dont get noticeable symptoms after cc'd but do have other food sensitivities ?

Also i have been making a habit of popping GlutenEase prior to meals whenever i eat out. My doc recommended this and it defly hasnt hurt

J

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

Celiac.com Sponsor (A8-M):


SGWhiskers Collaborator
SGWhiskers
Posted

I had to spend 3 months with eating only food I cooked myself from scratch before I could pinpoint the gluten source. I CCed myself constantly before that without realizing it. Once I was super strict, I could reintroduce things and be able to tell if eating out or grilling or other things caused a reaction. I learned I was more sensitive than I thought and that I wasn't entirely gluten free prior to the 3 months of cooking in a gluten free house all my own food.

Skylark Collaborator
Skylark
Posted

Your doctor is an idiot. GlutenEase and all the other DPP-IV products are a complete scam. DPP-IV only removes prolines from the end of peptides, it doesn't cleave ones in the middle like on gliadin peptide.

If you don't react noticeably to gluten, just take reasonable caution and you will be fine.

jasonD2 Experienced
jasonD2
Posted
  • Author

Well I wouldn't jump the gun and say my doctor is an idiot- he only suggested I take it as a precaution when eating out (for cc) and that I should still do my best to avoid gluten. not like he said i can eat at subway and the pill will digest all the gluten. I do notice some benfit from the enzyme so i will continue to take it as i see fit

By the way read the reviews for this product on i herb and amazon - all positive

cassP Contributor
cassP
Posted

hhmmm.. i just looked up that glutenease .. idk.. i DID used to take their DigestGold (with digestive enzymes)...

but ya- i THINK they explain in the fine print- that it helps alleviate symptoms but that it does not protect someone that is celiac.

i THINK it MAY help break it up- so it's easier to digest- however our antibodies will still recognize it, and start going into autoimmune mode. i THINK Papaya Enzyme helps break up Wheat Germ Agglutin... and D-Mannose helps to bind up Gluten... but still-> the best strategy is to AVOID it all together.

i dont have great advice for you- ive only been 100% gluten-free for 10 weeks, and have mostly avoided restaurants cause im just not sure how to be safe with all the stupid sauces,etc. :angry: ive only gone to Pei Wei (gluten-free menu), Chipotle (allergen list), and once ordered super plain sushi & brought gluten-free soy sauce packets with me.

still a little apprehensive.

ps- i cant always tell if ive been glutened, cause i have so many other intolerances

Skylark Collaborator
Skylark
Posted

Well I wouldn't jump the gun and say my doctor is an idiot- he only suggested I take it as a precaution when eating out (for cc) and that I should still do my best to avoid gluten. not like he said i can eat at subway and the pill will digest all the gluten. I do notice some benfit from the enzyme so i will continue to take it as i see fit

By the way read the reviews for this product on i herb and amazon - all positive

Placebo effect is a lovely thing. There is simply no way DPP-IV can detoxify gliadin for celiac disease. The enzyme does not cleave internal prolines. Period. You are NOT protecting yourself from damage!!!

jasonD2 Experienced
jasonD2
Posted
  • Author

Never said that it was protecting me from damage and the enzyme does in fact help me with digestion. sorry :(

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

Celiac.com Sponsor (A8-M):


jasonD2 Experienced
jasonD2
Posted
  • Author

And again I may not even have celiac - all i know is when i take this before meals in restaurants i always feel fine after and in the past there were times when i felt ill...even at the same restaurants

Skylark Collaborator
Skylark
Posted

Well, it's nothing to do with gluten/celiac. Whatever the enzyme is doing, I'm glad it helps you.

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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.