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

Hi


justsc

Recommended Posts

justsc Newbie

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?


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



Celiac.com Sponsor (A8-M):



Rusla Enthusiast

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.

mookie03 Contributor

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!

dlp252 Apprentice

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

hez Enthusiast

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

Hez

justsc Newbie
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.

Guest nini

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


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

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

mommida Enthusiast

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

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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

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

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748

    Erica Johnson
    Newest Member
    Erica Johnson
    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

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.