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

Positive Ttg Iga And Ema


TexasJenn

Recommended Posts

TexasJenn Newbie

I have been seeing a new doctor for various symptoms (the big ones being chronic fatigue and pain) after my previous doctor said I was depressed, and did no exam or testing. She ran a Celiac Panel at my request because my mom has Celiac, and I just wanted to be able to for rule it out. I was in no way even concerned about it. She called with the results and said I did in fact have Celiac. She said I tested positive for the tTG-IGA and EMA tests. I thought a biopsy was required to confirm diagnosis? I'm just shocked with the results, and I guess in denial. I mean, I feel pretty crummy, but not as sick as I would expect to be with Celiac. I'd like some opinions of others who have been there, done that!

BTW, she also diagnosed me with mild hypothyroidism, some severe vitamin deficiencies, and is testing me for adrenal fatigue.

Thanks!

Jenn


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

With those positives, especially the EMA in my book, I would say you have it. Also, the hypothyroidism and vitamin deficiencies go along with celiac routinely and I wouldn't be surprised by adrenal fatigue. And given that it is a genetically based inheritance disease - well, I would say you should eat gluten free regardless of what any biopsy may or may not say. Not everyone has dramatic GI symptoms - your chronic fatigue and pain are just as common. I know, it's hard to accept, but it is what it is. You could insist upon a biopsy if you really wanted it, and it is entirely up to you if you want this confirmation, but more and more doctors are realizing that you can have celiac disease and have a negative biopsy - about a 20% false negative rate.

Read around here a little and you will find people crying because they can't get a positive blood test..... :D

So I would say, "Welcome to the celiac community, Texas-Jenn" and here's to health.

TexasJenn Newbie

Thanks, Mushroom. I guess I'm still just getting used to the idea. I was ok until I really started looking into all of the things that contain gluten, and what really gets me is how careful you have to be because of cross contamination. As a mom of four, we are constantly on the go, and with my husband's crazy work schedule (and my lack of enthusiasm in the kitchen), we eat out a ton. A diet change is doable, but the lifestyle change that will be required is overwhelming. My mom adjusted really well when she was diagnosed four years ago, and I think that gives me a false sense of ease about it. She refrains from ingesting gluten in obvious ways, but doesn't worry too much about cross contamination and hidden gluten, so she makes it look so easy! She, however, doesn't feel good much of the time and I suspect it's because she's not careful enough. I don't want to fall into the trap of eliminating the gluten when it's easy and convenient, but not completely. And I figure that if I start off that way, it would be easy to continue that habit. So I'd like to be super careful from the get-go, and thinking about all that that involves is when I find myself getting so overwhelmed.

I'm not trying to have a pity party, I promise! I'm just verbalizing (or writing) my feelings about it to people who have been where I am. Reading about others' improvements is encouraging! I don't know what it's like to wake up without limping, in pain, and feeling rested, and it would be wonderful to have the energy and motivation to tackle my day with enthusiasm!

Thanks!

Jenn

mushroom Proficient

It's a vicious circle. The pain and fatigue from dealing with the gluten are making you think that you don't have enough energy to get rid of the gluten. Yet if you can stick it through the initial withdrawal and learning curve, it is amazing what energy and zest for life you may discover. Good for you, for seeing that doing things your mom's way doesn't really work. You do have to make it 100% and it does not make it easier if you "ease" into it. I "tried" to quit smoking for many years before I woke up one morning and told myself I had already had my last cigarette :P Never had another.

I personally feel that the only way to avoid cross-contamination is to make the house gluten free - when you think about it most foods (the whole foods) are naturally gluten free. Your husband and children can eat gluten outside the home as much as they want, but not in it. So you could still eat out but you would have to go to places where you could eat too. You will have to discuss this as a family, though - how to keep mommy safe. And don't forget that you should get your children tested too, because they have a good chance of having received the gene from you.

Mattie-Jack Newbie

I just have to add that I too am a mother of 4 and two of my children are gluten free. I often times feel disheartened and overwhelmed but just keep a great stock of gluten free snacks, fruits, veggies, yogurt around just in case. If I can't think of what to fix, I can always grab one of those. The biggest challenge for me is being prepared. I'm unable to just "wing it" when running around. I need to think ahead and have something planned to eat. You can do this:)

TexasJenn Newbie

Thanks, Mattie-Jack! I am terrible at planning meals ahead of time, so suddenly everyone's hungry and I have nothing prepared to cook. It all boils down to poor planning and time management on my part (although I like to blame all of our away-from-home activities and my husband's work schedule- 2nd shift). Maybe this is God's way of giving me an incentive to work on that. It's certainly going to make my meals healthier! Thanks for the encouragement. I KNOW I can do this, it's just so overwhelming right now that I don't know where to start. I'm working on it one day at a time, but eventually I need to stop eating day-to-day and actually plan meals for grocery shopping, etc. I guess I'll start by cleaning out the pantry! :)

Jenn

Mattie-Jack Newbie

Your activities are a legitimate excuse! It isn't easy to plan, especially with so many distractions. I actually gave several things to neighbors out of my pantry yesterday. I've also cooked a week's worth of meals out of a new cookbook I was given as a gift - Gluten Free Quick & Easy by Carol Fenster. It has several family friendly meals and several of them build on each other. I've been able to double and freeze to pull out for later. It was a change from my normal routine but doubling takes little extra time but gives us more freedom at dinner time with busy nights. Good luck!


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

There's a really long "what are you cooking tonight" thread here that should give you plenty of ideas! Start simple. Make some rice, bake some chicken pieces, and fix a veggie or make a salad with oil and red wine or basalmic vinegar. Viola! Easy, wholesome gluten-free dinner that requires no label reading.

domesticactivist Collaborator

Hey there! It's great you are starting off right, by cleaning and looking for cross contamination sources. I agree with whoever said it's much easier to be safe in a gluten free house. Get the kids' bloodwork done before taking them off gluten, though!

You should check out crockpot365 for lots of easy recipes for the crock pot. Focus on veggies and meats rather than packaged stuff and restaurants in general. The change will be worth it!

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):



  • 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.