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

Newly gluten-free W/ Some ?s


kduggan

Recommended Posts

kduggan Rookie

hey all, i'm 19 and i've been trying to follow a gluten-free diet for about a month to a month and 1/2 now. I think I was only diagnosed with a gluten intolerance (which my doctor kept calling sprue...i think he's semi-crazy but ya kno) i've been label reading fairly religiously but i've only really been checking for the word wheat in the labels...what else do i need to avoid? also, i've read some things that say oats are fine, and others that say oats are not...which is it?

my sypmptoms also weren't really typical celiac ones either...mostly i've just had really bad "heartburn" for about 6-8 months, i've taken zantac, and prilosec, and finally got switched to nexium, which has helped alot, but after my endoscopy my doctor biopsyed soemthin and said i could be gluten intolerant/have sprue...i had a blood test done but that came back negative. since i continued to have heartburn, he recomended trying a gluten-free diet. So, in my attempt to prove him wrong i followed it strictly...and i unfortunatly i've fortunately been feeling better...but i still have some heartburn occasionally despite my diet...still taking nexium daily as well

sorry to ramble on, but i wanted to see if anyone had any similar symptoms/any thoughts on the matter...also what ingredients to avoid in my label reading would be much appreciated...thanks!!


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

Welcome kduggan! :D

You will find lots of info on this site. If you go to the home page of celiac.com and scroll down they have a list of safe and forbidden ingredients.Safe and Forbidden food lists

Oats can be cross contaminated and are therefore not tolerated by most people with celiac or gluten intolerance. Both celiac and gluten intolerance mean gluten free for life. Have you asked your doctor about allergy testing? There are many things you could do including an elimination diet which would include eliminating a common allergen for 2-4 weeks and noting how you feel and then bringing back into the diet and noting how you feel. Some of the more common ones on the forum aside from gluten :P are dairy and soy but you'd also want to check eggs and nuts. Allergy testing would give you a possible heads up, that's what I did. After my allergy testing I also had my family tested through Open Original Shared Link for gluten intolerance as well as the other tests they run. It is expensive and usually not covered by insurance.

Others will jump on and give you more ideas.

Daxin Explorer

Celiac disease can be called Celiac/Non-Tropical Sprue. Some people consider Gluten intolerance to be the same thing as celiac.

I have been gluten free slightly longer than you have, but can tell you it gets easier every day, and if you are already feeling better, than I don't know how it's unfortunate. If your doctor was right, then you will feel better and better every day. HOw can that be a bad thing?

All I can tell you is to be VERY careful what you are buying. I have dicovered it's not AS restrictive as I thought, and with new labelling laws, it is not to tricky to find wheat and I have found I can pick out the gluten containing ingredients with little trouble now.

Welcome to the boards. I hope you can find all the answers you need.

  • 2 weeks later...
rogue Rookie

When I was 18 my very first symptom was heartburn. And then it just got worse from there. I had debiliating flu-like symptoms for years. Consider yourself lucky- my first doctor thought I had an ulcer and sent me off to a Gastroenterologist who performed an endoscopy and only found irritation. I had zero villous atrohpy (unlike yourself) and my blood test for Celiac came back negative. It fact, it came back negative for 8 years until I moved to Croatia and ate a gluten-rich diet for three months straight. I was only just diagnosed a little over a year ago when I was 26. After 8 years of being ill I was finally told to go gluten-free.

So to save yourself the trouble of years of being ill, follow your doctor's advice to a T for several months and see how you feel. I would also consider that you might have Gastroesophageal Reflux Disease (GERD) in combination with your Celiac. I have the same thing and take Prevacid, which isn't over the counter so you'll have to ask your doctor about it if the heartburn doesn't totally go away on the gluten free diet.

It's not as bad as you think. The diet is a pain in the butt sometimes, but it keeps me slender and healthy. I now look at all the garbage that my friends eat and sometimes think I'm going to live to be so much older than them!

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. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    2. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    3. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    4. - Kirita posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Recovery from gluten challenge


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,242
    • Most Online (within 30 mins)
      7,748

    hart.tony.james
    Newest Member
    hart.tony.james
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
    • Kirita
      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
×
×
  • 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.