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

Sick For How Long?

-product-

Recommended Posts

-product- Newbie
-product-
Posted

i am new to this forum and to gluten intolerance. i have not yet been diagnosed with celiac disease, but i have a strong suspicion that is the problem. i had a colonoscopy about three weeks ago and the only information i was given was that i did not have chrones disease. i have a follow up apointment soon. i have been on a gluten/lactose free diet for about two months now, and for about three weeks had been symptom free. then three days ago, when i woke up (like before the g/l free diet) i was sick. then yesterday and today, the same thing.

anyway, my actual question is...

when gluten slips in to your diet, how long do you show symptoms before you get better.

_product_

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Welcome to the board!

When I get "glutened" it takes 8 days for me to feel better. Gluten is hidden everywhere, just try to make each "glutening" a learning experience so that you learn what to avoid next time!! It takes time to figure out all the hidden sources. Nini (on this board) has a beginner's kit you can download off her website that is a help for many.

Since you're already gluten-free, if they do testing, it would probably be negative even if you do have gluten intolerance. Conventional testing requires you to still be eating gluten. However, dietary response is the most accurate test of any on whether or not you have gluten intolerlance, it just can't tell you whether you have celiac disease (not that it matters since it's the same "cure"!).

The colonoscopy will not tell you whether you have celiac. They do an edoscopy and small bowel biopsy for that (they go in through the other end ;) ).

-product- Newbie
-product-
Posted
  • Author

Thank you CarlaB for your response. that is helpful.

when i re-read my post just now, i realized that i also meant to ask...

"How long does it take once you injest gluten for a response to show up"

for me, it seems to be, like the next morning...

but in the past, i was only sick for one morning. this is the first time that it has been longer than a single morning.

i have a follow up this friday, is there anything that you guys could suggest that i could ask my doctor.

rob

CarlaB Enthusiast
CarlaB
Posted

Rob, mine generally shows up within a half hour, but I know it varies a lot from person to person. Many times I can tell I was glutened while still eating a meal.

-product- Newbie
-product-
Posted
  • Author

wow. what test's should i ask my doctor about, if you don't mind.

rob

ravenwoodglass Mentor
ravenwoodglass
Posted

For me the neurological effects show up right away, a worsening of my ataxia, depression and sleep disruption. My GI symptoms begin within 24 hours with a growling tummy, gas and pain then the big D hits about 3 days after injestion. Then I have a couple of weeks of joint pain before things finally will resolve.

You should ask your doctor to run a full celiac panel, although be aware that you may see a false negative since you have been gluten-free for a while or just a low positive, ask to see the actual test results. Like with pregnacy any positive is a positive. You should also ask for tests for your levels of B12, folate, ferritin (iron) and have him also do a general blood workup with the standard tests.

CarlaB Enthusiast
CarlaB
Posted
wow. what test's should i ask my doctor about, if you don't mind.

rob

I was deferring that question to someone else. I was gluten-free for my testing and it all came out negative, so I went to Enterolab. I should have known for sure from dietary response, but I have kids and wanted a firm diagnosis and to know what genes I had to pass on.

I would definately ask for the celiac panel ... not just the IgA.

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

Celiac.com Sponsor (A8-M):


-product- Newbie
-product-
Posted
  • Author

thanks everyone... you guys have been great. anyone suggest anything to control symptoms until the eight or so days is up.

rob

CarlaB Enthusiast
CarlaB
Posted
thanks everyone... you guys have been great. anyone suggest anything to control symptoms until the eight or so days is up.

rob

Just be sure to stay hydrated ... there's not much you can do but wait it out.

  • 2 weeks later...
sparky Newbie
sparky
Posted
i am new to this forum and to gluten intolerance. i have not yet been diagnosed with celiac disease, but i have a strong suspicion that is the problem. i had a colonoscopy about three weeks ago and the only information i was given was that i did not have chrones disease. i have a follow up apointment soon. i have been on a gluten/lactose free diet for about two months now, and for about three weeks had been symptom free. then three days ago, when i woke up (like before the g/l free diet) i was sick. then yesterday and today, the same thing.

anyway, my actual question is...

when gluten slips in to your diet, how long do you show symptoms before you get better.

_product_

RECOVERY TIME: I just wanted to help everybody out here. I've been gluten free for 9 months. It took me about 6 months to get more significant/more noticeable results. Still, I have to watch my diet. I can't eat fatty food. Everybody, please go check out MayoClinic.com and search for celiac disease. I also worked at Mayo Clinic Hospital for a little while. My understanding is that the villi can take anywhere from 6 months-2 yrs to heal or grow. Then 2yrs to 5yrs for close to 100% recovery. The reason for the such the large range of time has to due with age/severity. These villi, in the small intestine, are responsible for absortion and production of enyzmes to break fats/proteins in food. So, as you can see, they are very important. People experiencing Dermatitis Hepataformis (DH), can expect to wait up to 2 yrs to clear up. Me, I've had skin problems, diahrrea, lupus like symptoms, and etc. I've also lived 15 yrs. not knowing what the heck what going on. I'm 30 yrs old now. From age 26-29 my symptoms got really bad. All the CELIACS out there who are just diagnosed. HAVE HOPE. It will get better. There is a 95% chance you will recover in time. I think the other 5% who don't are either still eating gluten or the villi are dead. These are good odds. If you are younger (new born-50). Odds of recovery are almost 100% One final note for complications of recovery. Ya, you probably heard that we celiacs become lactose intolerant. This is due to the tips of the villi, where lactate (enzyme that breaks down lactose in dairy) is produced, being damaged. My final piece of advise for those who aren't recovering. Make sure you are not cross reacting with SOY or MILK. Guess what? These two have very similar protein structures to gluten. This may make the immune system react and destroy your villi. That's right, gluten isn't the only substance that can trigger a villi attack.

happygirl Collaborator
happygirl
Posted

Response times vary....mine come very sudddenly (within the meal, usually, and develop over the next few hours)....others take a few hours...others come a day or so later.

Hope you are feeling better!

Dr. Fassano (a leading researcher at the U of Maryland, Baltimore) says that you should have tested:

There is a particular series of blood tests called the ‘Celiac Panel”. These tests measure your immune system’s response to gluten in the food you eat.

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

Check out this thread that I just responded to about testing:

www.glutenfreeforum/index.php?showtopic=24451

Hope this helps-let us know what we can do.

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

      Supplements for those Diagnosed with Celiac Disease

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    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.