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 Diagnosed With celiac disease


msaz

Recommended Posts

msaz Newbie

Hello I am new to this site and also newly diagnosed, It took many doctors and many years of pain and confusion to finally find out what was wrong with me. I would greatly appreciate any and all information on this disease as I am just starting to realize how difficult it will be. I am still in pain and was wondering if anyone can tell me how long they continued to have pain after they were diagnosed. I also suffer from chronic neck pain due to hierniated disks. I have also had a lot of lower back pain and osteoarthritis. Does anyone else feel the back pain?

masz


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
Hello I am new to this site and also newly diagnosed, It took many doctors and many years of pain and confusion to finally find out what was wrong with me. I would greatly appreciate any and all information on this disease as I am just starting to realize how difficult it will be. I am still in pain and was wondering if anyone can tell me how long they continued to have pain after they were diagnosed. I also suffer from chronic neck pain due to hierniated disks. I have also had a lot of lower back pain and osteoarthritis. Does anyone else feel the back pain?

masz

Welcome,

You have found a wonderful site to learn all that you need to know about Celiac.

The average diagnosis time is eleven years. You are in good company here.

The diet can certainly be overwhelming. But, good words of advise is to start simple. Simple, meaning meat, fish, rice, potatoes, fresh veggies, and fruit. No processed foods for a while. You can add food items a little at a time and more so when you have mastered the art of label reading.

A new toaster is a must, old wooden spoons and cutting boards should be replaced. Gluten can hide everywhere. That way you avoid contaminating your food with pre-celiac utensils.

Undiagnosed Celiac can lead to some unfortunate issues, but many have found that eliminating gluten from their diet, their issues have reversed themselves, or in the least improved. I doublt that the gluten free diet can help your disk issues, but it may very well help with the others.

This is a great site. Take some time to walk around.

luvs2eat Collaborator

And take your time. I was gluten-free for an entire year before my bowels returned to anything I'd consider normal... w/ lapses at any time!

There are plenty of gluten-free foods in your every day diet ... you don't have to go looking for pre-packaged convenience food.

Check out the bread threads... that's always an issue. I don't have a bread machine but make a loaf a week of either Anna's bread mix or Pamela's. They are awesome.

I'm still looking for a gluten-free bagel... haven't had one in more than 5 years!!

elye Community Regular
I'm still looking for a gluten-free bagel... haven't had one in more than 5 years!!

Kinnikinnik makes absolutely delicious bagels and english muffins (brace yourself for the cost, though!) You can order from them online, and they deliver. :)

Kathe Newbie
And take your time. I was gluten-free for an entire year before my bowels returned to anything I'd consider normal... w/ lapses at any time!

There are plenty of gluten-free foods in your every day diet ... you don't have to go looking for pre-packaged convenience food.

Check out the bread threads... that's always an issue. I don't have a bread machine but make a loaf a week of either Anna's bread mix or Pamela's. They are awesome.

I'm still looking for a gluten-free bagel... haven't had one in more than 5 years!!

Try Kinnikinnick sesame bagels. They are awesome! Order at kinnikinnick.com Kathe

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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

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

      Airborne Gluten?

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

      Gluten Issues and Vitamin D

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

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,244
    • Most Online (within 30 mins)
      7,748

    tmperrella
    Newest Member
    tmperrella
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • 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:  
×
×
  • 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.