Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Hi

justsc

By justsc
in Coping with Celiac Disease

Recommended Posts

justsc Newbie
justsc
Posted

I'm new here and thought I'd just say "Hi." :)

I am pretty overwhelmed with this disease and all of its intricacies and related conditions. I commend all of you who have found a way to manage your lives in the midst of having Celiac disease.

I was told I "probably" have Celiac disease after an intestinal biopsy and concurrent blood tests in September of 2004. They also told me I probably had some form of auto-immune condition. It almost cost me my life. No one knew what was wrong with me. I had lost almost 100 pounds in 6 months and was in the hospital being tested for anything and everything, including communicable diseases. I had honestly reached the point where I didn't even have the energy to "explain" my condition to each new doctor put on my case.

Anyway, I am doing the best I can at staying gluten-free. I'm sure I don't have to tell any of you how overwhelming it is to do the necessary homework and try to stay gluten-free, all the while trying to lead some semblence of an ordinary life.

I kinda feel like I'm a walking diagnostic device that goes off whenever my body detects gluten. I'm still learning what does and does not have gluten - and if I happen to ingest some by mistake it takes very little time before the bells go off.

I do have a question - how long does it usually take for a person to begin to suffer from taking in gluten?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rusla Enthusiast
Rusla
Posted

Hi Steve,

Welcome to the board.

As for your question, everyone reacts in a different amount of time, including me to things I have come into contact with. One day at work I came into contact with a very small amount of bread and I got DH instantly. Other times it could take hours or even a day but the last one is pretty rare..

You will get lots of great support and info on this board. I really don't have a problem sticking to gluten-free foods, just I have to clean everything at work. When I go out I question serving staff and people extensively and make them show me the ingredients so I can read them. I guess I have become the Wheat-free/ gluten-free Nazi. I just don't want to go through what I went through before.

Link to comment
Share on other sites
mookie03 Contributor
mookie03
Posted

Steve,

Welcome! I found that initially, my rxns were a lot more severe than they are now, but i usually feel a little sick immediately and get more sick over the next few hours. It also depends what i eat and i noticed that if i drink alcohol after or during an accidental glutening, my rxn is delayed but multiplied by 1000 the next morning (and coupled with a hangover, so even more fun!) :D You'll probably notice that your rxns are not the same to every food - cross contamination affects me differently than actual gluten. Good luck, and feel free to ask any questions!

Link to comment
Share on other sites
dlp252 Apprentice
dlp252
Posted

Just wanted to say welcome! Wow, I'm glad they finally found what was wrong.

Link to comment
Share on other sites
hez Enthusiast
hez
Posted

Welcome to the board! When I have been glutened I usually notice within an hour to two hours.

Hez

Link to comment
Share on other sites
justsc Newbie
justsc
  • Author
Posted
Welcome to the board! When I have been glutened I usually notice within an hour to two hours.

Hez

That's similar to how I react as well. Often I can get a feel for how bad it's going to get based on the level of the early indication. Sometimes it goes on and gets worse.

Unfortunately, I also have a condition where I get bowel obstructions, once to twice a year. They both feel somewhat similar at first, so I'm not usually sure what's really happening for a bit. Believe it or not, I'm usually thankful it's a gluten reaction.

Link to comment
Share on other sites
Guest nini
Guest nini
Posted

welcome to the board... make yourself at home!

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

hello

I also wanted to welcome you to this site. I have learned so much since joining and I think we are a great bunch of smart people.It's kind like being in school again someone always has a good ? Then someone else finds the clue and many come up with good advice.

Stay calm and don't let this pull you down - there is light at the end of the tunnel.......

You will receive loads of support from this group....

blessings

mamaw

Link to comment
Share on other sites
mommida Enthusiast
mommida
Posted

Welcome,

I notice a reaction from 15 minutes to about 14 hours from eating. I notice at first my belly starts to bloat and then... well let's just say it is not pretty! I can feel tired for up to 3 days afterwards.

Laura

Link to comment
Share on other sites

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. plumbago
      - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed...
    2. trents
      - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    3. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    4. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    5. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Lots of tests

      By plumbago · Posted

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Lots of tests

      By trents · Posted

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...