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Sharlotta schlaegel

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Sharlotta schlaegel Newbie

Hope I'm posting in the correct area. Hi I'm new and learning to navigate around this forum. I've felt alone on my mission of surviving omitting gluten. And now I've hit the jack pot! A forum such as this. I know ( and extremely excited) I'm on a power journey with so much experience to access.


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Ennis-TX Grand Master

Welcome to the forums, this is a great group for support. I have multiple issues (check profile) related to Celiac disease myself. It have been a great experience here over the years. And I often find myself helping others or coming out about my issues here. Feels like a nice understanding family most the time. I also post often on recipes, suggestions on supplements, and help finding foods for people and cooking instructions. Feel free to talk about your issues and ask questions, many of us are have years of experiences dealing with the disease.

GFinDC Veteran

Welcome to the forum Sharlotta! :)

If you are trying to learn gluten-free eating, you came to the right place.  We do have a thread for beginners called Newbie 101 in the "Coping With" forum section that might help.

Also, we have plenty of helpful members who can steer you forward.  Feel free to fire away with questions! :)

P.S.  If you click the green circled plus sign right of your thread title, you can follow this thread and gets emails when someone replies to it.   Very helpful! :)

Jmg Mentor

Welcome Sharlotta :)

As others have said this is a great site with lot's of good info and helpful members. I hope you find as much help and support here as I have and that you get all the answers you need. 

Sharlotta schlaegel Newbie
10 hours ago, Ennis_TX said:

Welcome to the forums, this is a great group for support. I have multiple issues (check profile) related to Celiac disease myself. It have been a great experience here over the years. And I often find myself helping others or coming out about my issues here. Feels like a nice understanding family most the time. I also post often on recipes, suggestions on supplements, and help finding foods for people and cooking instructions. Feel free to talk about your issues and ask questions, many of us are have years of experiences dealing with the disease.

Thank you for your informative and warm welcome.  My biggest grip is miss labeled products.  I'm positive that is a huge issue with many many people. I've come to realize that it is an issue I will need to move around since I can't change it. So I tend to rotate meals I know are safe. And know that I must be satisfied with that. 

Anxious to read the posts here. 

 

Ennis-TX Grand Master

I personally stick to soups, stir Fries, egg white omelettes with added fats, and my own homemade, ice creams, cheese sauces, and dips. And sometimes treat myself to my own baked goods, and tiny bits of foods I prep for others. I also snack alot on stuff I trust from brands I trust of seeds, nuts, etc. Sometimes you branch out a bit and it bites back like a rabid animal though.

  • 6 months later...
Guest

Hello and welcome fellow forumer. We hope you would enjoy your stay as well.


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Guest

Oh sorry for the late response.

Guest

But any how guys thanks for the messages.

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    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
    • Scott Adams
      I guess using "GF" instead of "PL" would have been too easy! 😉
    • trents
      I was wrong, however, about there being no particular health concerns associated with high total IGA: https://www.inspire.com/resources/chronic-disease/understanding-high-iga-levels-causes-impacts/ So maybe the physician's "borderline" remark is relevant to that.
    • trents
      Sometimes that is the case but what is curious to me is the remark by your physician about being "borderline". I assume he was referring to the total IGA score but it just seems like an irrelevant remark when it is on the high side rather than being deficient.
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