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New To Celiac

JesLS

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JesLS Newbie
JesLS
Posted

Hi, my name is Jessica (call me Jes) and my daughter was recently diagnosed with celiac disease. This has been a long time coming. She is 11, almost 12, and weighed only 56 pounds...since being on the diet (maybe 6 weeks now) she has reached 62 pounds, which is a huge improvement! She was deficeint in her vit k, vit b complex, iron, and just didnt look healthy, she either had severe diarhea, or very constipated, and almost every meal upset her stomach. Finally, the dr ran some bloodwork and she had the antibodies for a gluten intolerance...im so very new to all of this. We are still experimenting with gluten-free foods, we are finding that this diet is so incredibly expensive, and it has proven to be a trial and error adjustment! Any advice to a new to gluten-free family would be great, especially on how to shop on a budget!

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Violet Ave Newbie
Violet Ave
Posted

I am new too! My daughter was also just diagnosed, although she is only a year old. I have already seen awesome improvements after just a few weeks gluten-free as well :) Well, I look forward to seeing what more experienced moms say!

Julie

macocha Contributor
macocha
Posted

new here too! welcome. the recipe and product forum is filled with great info :)

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    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      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
      IBS-D vs Celiac

      By par18 · Posted

      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
      IBS-D vs Celiac

      By trents · Posted

      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
      IBS-D vs Celiac

      By SilkieFairy · Posted

      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.   
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