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

New To Celiac


toothpicker

Recommended Posts

toothpicker Newbie

Hello,

I am very new to Celiac (have been gluten-free for about 2wks - what an interesting adventure). The doctors are still up in the air about firm diagnosis.... "try the diet, see if you feel better". I go back on the 29th. So far, this last week esp., I feel soooo much better. Who knew I had so much energy and can eat with out being sick! I have 2 kids who have on/off again belly trouble and am taking them this week to talk to the pediatrician. I was wondering if anyone knew of any support-groups around the Butler, Pa area? I'm kind of stumbling in the dark, reading all I can, and I have several lists of things that I can and cannot have in my purse. Any advice would be greatly appreciated!

Toothpicker


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



Celiac.com Sponsor (A8-M):



Rikki Tikki Explorer

Hi toothpicker:

Welcome to the board! I live in Northern California so can't be much help to you regarding a support group in your area. But you will learn quite a lot on this site and find many people that have a lot of knowledge and are willing to answer about any questions.

Again welcome :D:D:D

mythreesuns Contributor

Welcome! I'm new too. Gluten free for about 3 weeks or so...with some slip-ups already.

I don't know anything about support groups, but I am thinking about having my children tested as well. I'm waiting to get some EnteroLab testing done to be sure, because my blood tests and endoscopy came up negative.

Good luck with the diet. This place is a GREAT resource for info and support.

toothpicker Newbie
Welcome! I'm new too. Gluten free for about 3 weeks or so...with some slip-ups already.

I don't know anything about support groups, but I am thinking about having my children tested as well. I'm waiting to get some EnteroLab testing done to be sure, because my blood tests and endoscopy came up negative.

Good luck with the diet. This place is a GREAT resource for info and support.

Thanks for the welcome! How did you feel after the slip ups? I accidently ate something on my "no-no" list, and was pretty sick all evening and tender the next couple of days. What are the EnteroLab tests? I had a neg. biopsy and I don't know how well the blood test will work since I've been on the diet. I guess they can test for the gene. I do know that I feel better, slowly getting my energy back......I actually stopped taking my protonix (for reflux) 4-5 days ago, and have not had one twinge! YaY!

Do your kids have any symptoms? I take mine on Thurs... I'm trying to prepare them for bloodwork.

Thanks again for your response.

queenofhearts Explorer

Welcome, Toothpicker! You can post a question about a specific region in the Meeting Room; I bet you'll find someone in your area. If you haven't already found out about Nini's Newbie Kit, it's very helpful... you can find it on her site, Open Original Shared Link

Good to have you with us!

Leah

toothpicker Newbie
Welcome, Toothpicker! You can post a question about a specific region in the Meeting Room; I bet you'll find someone in your area. If you haven't already found out about Nini's Newbie Kit, it's very helpful... you can find it on her site, Open Original Shared Link

Good to have you with us!

Leah

thanks for the link.... I can use all the info I can get.

mythreesuns Contributor
Thanks for the welcome! How did you feel after the slip ups?

What are the EnteroLab tests?

Do your kids have any symptoms?

Well, first of all, I feel tired and bloated, and usually have some diarrhea when I get contaminated.

Many people here know much more about EnteroLab testing than me, but you can go to www.enterolab.com for more info.

My oldest son has Asperger's, and has had problems in the past with constipation/diarrhea, but Asperger's and celiac seem to be related somehow, at least a little bit, so it's worth the testing since I'm having so many problems.

My middle son has had chronic diarrhea for a couple of years, and he has neurological *differences* as well (Tourette's and OCD).

The 2 y.o. has some mild neurological issues (a neurological speech disorder and mild SID) but so far his digestive system seems to be ok. Again, it's worth the testing given the whole family history.


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



Celiac.com Sponsor (A8-M):



toothpicker Newbie
Well, first of all, I feel tired and bloated, and usually have some diarrhea when I get contaminated.

Many people here know much more about EnteroLab testing than me, but you can go to www.enterolab.com for more info.

My oldest son has Asperger's, and has had problems in the past with constipation/diarrhea, but Asperger's and celiac seem to be related somehow, at least a little bit, so it's worth the testing since I'm having so many problems.

My middle son has had chronic diarrhea for a couple of years, and he has neurological *differences* as well (Tourette's and OCD).

The 2 y.o. has some mild neurological issues (a neurological speech disorder and mild SID) but so far his digestive system seems to be ok. Again, it's worth the testing given the whole family history.

Well, I hope all goes well... I bet you have your hands full w/3 boys.... I have 1 of each and they keep me on my toes (looked out yesterday, and my son was on his skateboard on top of the slide ready to ride it down). I sometimes think Celiac will be the easiest thing to keep him safe from! :lol:

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
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    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.