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sugarsue

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sugarsue last won the day on August 12 2016

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About sugarsue

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  • Gender
    Female
  • Interests
    Lyme disease, Hashimoto's, Celiac, Gluten Intolerance, PANDAS,
  • Location
    North Carolina

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  1. Hello friends! I wanted to report that my daughter has been gluten free since her biopsy in August. She told me yesterday that she is almost back to herself. All her pain is gone and her mental state is so much better. I think in a few more months she will be 100%! She he glutened herself...
  2. Hello we got her biopsy results back and they are normal. The doc is calling her non celiac gluten intolerant and lactose intolerant. Now we will just wait to see if the gluten-free diet helps her. She does have elevated IgG to casein and wheat I know there is controversy on whether that...
  3. My 15 yr old daughter had her endoscope today. The stomach showed signs of gastritis and she's starting some meds for that. The esophagus and intestine looked fine according to the doc. I've done some searching here and have read that I can't really have any thoughts on whether this might imply...
  4. Hello, I'm sorry for all you are going through! I thought I would share that a friend of mine has a daughter with EoE and she had to have a feeding tube inserted and only ingest the formula for nutrition. Over time, with one food at a time, they have been trying foods/spices she can tolerate to...
  5. We found a great GI doc and saw her yesterday. She said my daughter's total IgA of 49 should be high enough for the test to register correctly. However due to her symptoms and former positive reaction to gluten free diet, she's scheduling an endoscopy and after that either confirm celiac or assume...
  6. Well, a different doc is checking for wheat allergy not the one who ran the celiac test. Interesting about the lyme and ttg iga, I didn't know that. So much to muddy the waters with her. She's been treated for lyme for many years but they keep coming back with other tick borne illnesses that...
  7. So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test. If this is so, I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category. Why bother...
  8. Cyclinglady - thank you for the confirmation and support. I've left a message with her doc to see if they will provide a referral to a GI and I'm also checking with our local Celiac group to see if they have any recommendations for docs that don't need a referral.
  9. My daughter is really sick (long story) and she's been evaluated for Celiac. The doc looked at these results and said no celiac. Thoughts on the weak positive and the low total IgA? I read that low total IgA can cause the celiac test to not work. I'm thinking we should see a GI but not sure yet...
  10. I am curious, how do your breakouts appear after being glutened? My daughter (age 7) who we still don't know if she has DH or not, but after going gluten free her skin issues have resolved themselves. However, she still has some marks on her inner thighs that have never gone away (purplish spots...
  11. I don't know what is right or wrong or possible or not possible regarding gluten labeling and testing, but I do know that I just glutened my daughter by the Trader Joe's Cheese Puffs. I knew the back said shared "equipment" and it was our first try at that. I thought it would be OK since she has...
  12. Thank you for the reply! We see her pedi on Tuesday and after that I'll look for a dermatologist if our pedi can't recommend one. We are lucky that we don't need a referral. Your post has me hopeful that maybe we will find the answer and worried that you are right and she will be diagnosed celiac...
  13. Hi guys. I'm obsessed with trying to figure out what's going on so please forgive me..... We see my dd's (age7) Peditrician on Tuesday. He's already seen the "rash" on her legs and thinks it's molluscum. I'm thinking it's DH. She's had her celiac panel but I don't know the results yet. ...
  14. Hi, I have Hashimoto's Thyroiditis and if I'm remembering correctly, positive TPOAB is positive anti-thyroid antibiodies which means that you do have a thryoid autoimmune disease. My TSH is always low normal but my doc's supress it to help with symptoms. If my TSH stays closer to .9 I feel much...