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Mermaid's Mom

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Everything posted by Mermaid's Mom

  1. Mermaid's Mom
    Thought this was interesting. There were things I saw on there that I hadn't connected to celiac! Open Original Shared Link
  2. Mermaid's Mom
    Did not know! Thanks! Also how do you give a member a green plus sign/reputation?
  3. Mermaid's Mom
    Guess who went to school today!!?? And with a HUGE smiley face and a s$#& load of energy! One day at a time!
  4. Mermaid's Mom
    How sweet! And how lucky you are to have such an amazing momma!! I tease my daughter that when she grows up she will either move across the country to get away from me and my crazy ideas OR she will never move out! Time will tell Give your mom a hug from us!!
  5. Mermaid's Mom
    Thanks! I always joke that when I imagined having kids I pictured myself kissing boo-boos, hiding Easter Eggs, ignoring temper tantrums, helping pick out a prom dress...I had NO IDEA that in reality I would be pouring over medical journals and learning about the Vestibular system, gluten anti-bodies and every detail about how the body/brain works. And...
  6. Mermaid's Mom
    Oh and posterboy just now I see that the article confirms what you are saying: A new screening tool for gluten ataxia may soon be available. Recently, Hadjivassiliou found that approximately 70 percent of individuals with gluten ataxia have an antibody, TG6, which is related to the main antibody detected in untreated celiac disease, TG2. But unlike TG2,...
  7. Mermaid's Mom
    Thanks for the links! Will check them out!
  8. Mermaid's Mom
    There is so much conflicting info out there! I just read and article that said this: In 2011, gluten ataxia was officially recognized as distinct from celiac by a panel of 15 international celiac experts who convened in London to describe and define the growing set of gluten-related disorders, especially non-celiac gluten sensitivity. Article: Open...
  9. Mermaid's Mom
    I actually considered homeschooling her this year because the chronic fatigue made it difficult for her to get to class and complete work at the same pace as her peers. She was the one who pushed for going (it was a new school also) and it was the best decision EVER! She has made so many new friends and this is the most "normal" she has ever been. Previously...
  10. Mermaid's Mom
    Well I REALLY needed that pat on the back more than you know so THANK YOU for taking the time to type them. There are so many ways in which I have not followed the "rules" and endured the eye rolls and judgements so it is nice to hear someone appreciate those very things. Currently having a 13 year at home for no good "reason" is just one more thing that...
  11. Mermaid's Mom
    So as I have stated I think my daughter has Gluten Ataxia. I realize that it isn't commonly recognized and that there may not even be answers to some of these questions but I am going to throw them out there and see if people can help educate me. 1. How is it classified? I am reading through all kinds of posts (old and new) and it seems that commonly...
  12. Mermaid's Mom
    We would not even entertain the idea of ant-depressants. We didn't even medicate her for the ADHD diagnosis because my gut knew it was incorrect. I hope I am not painting it as more dire than it is. In reality it is just so out of character for her. This week there are new rules...she has to be up and out of bed by 9:30am so that she doesn't stay up...
  13. Mermaid's Mom
    Lots of these places are Buffet style...and from what I understand it is ALL cross contaminated. If where you are going is not and you order off a menu I might be less concerned but you really do still run the risk.
  14. Mermaid's Mom
    Thank you! Ironically she has the taste and smell of a professional food taster! I have a story I tell people about the time I used a darker Brown sugar in her fave chocolate chip cookie recipe. She ate one and immediately asked if I had done anything different to the recipe. I admitted there was a change but that I bet she could figure it out without...
  15. Mermaid's Mom
    Could you have a shellfish allergy? That reaction sounds like my husband when he is exposed to shellfish. It is a gradual allergy and can get worse with each ingestion so I would not consume shrimp again without being prepared with liquid Benadryl or an epi pen. Or get tested!
  16. Mermaid's Mom
    I actually like this theory and feel it makes sense for what we are seeing in her! I think you are on to something!
  17. Mermaid's Mom
    She is on a B12 injection and we are supplementing her at home with: Magnesium citrate (seems to have cured her constipation - knock on wood!), B12 with a B6 "boost", Vitamin D3, Vitamin C, A probiotic with 12 strains and 30 billion CFU and an Omega 3. Should I add anything else? And thank you for your kind words!!!
  18. Mermaid's Mom
    I liked your post because it was so hopeful to read that you think she may have a chance at a full recovery but I HATE that you had to suffer that long with those issues. It has been painful to watch this beautiful girl waste away. I hate that anyone else has suffered that way. Definitely we are see HUGE differences in her personality. Over the last...
  19. Mermaid's Mom
    wThis is such a timely post for me as we are just realizing that my daughter has neurological issues related to celiac/gluten intolerance. Almost 3 years ago, hen she was 10 she was no longer able to swallow food. Prior to that there were of course issues with anxiety and sensory things but the inability to swallow was what started the nightmare. She...
  20. Mermaid's Mom
    She is scheduled to go on Monday. I'm not overly concerned - as I can see WHY she is probably struggling. She is a great kid with an amazing support system so I know she will figure it out and feel better everyday. I also booked her an appointment with a Nutritionist so that can work with her food preferences to create some fun yummy meals that I am not...
  21. Mermaid's Mom
    I think she is dealing with withdrawal. She has headaches and shakes. Her day is very structured actually. She is just chronically fatigued for the past 12 months so the school adjusted her timeline to allow her to wake rested (severe insomnia) and allow time for Occupational therapy. She has lots of friends and playdates but she seems to hit the wall...
  22. Mermaid's Mom
    We are exactly one month into being gluten-free and I can see that my daughter is struggling a bit. It could be a NUMBER of things but I have read about some emotional fallout of being gluten-free and wonder if that is what is going on. For the record...we have been through a ROUGH 2.5 years. She has been to so many Drs and specialists. She has done so...
  23. Mermaid's Mom
    I am AWFUL for this! Now that I am "enlightened" I feel it is my duty to tell EVERYONE! LOL!. We really do live in a society where people would rather take meds than change their diets. My own personal story is not earth shattering enough to change anyone's mind but I am telling you Gluten was literally killing my daughter. Week by week we just kept...
  24. Mermaid's Mom
    I decided to go Gluten Free out of support for my daughter and because I do struggle with digestive issues and my energy level isn't consistent. I expected that I would feel better but I didn't truthfully expect a BIG difference. In the month that I have been gluten-free I have twice consumed ONE bite of Gluten foods (a pastry once and then a bite of a...
  25. Mermaid's Mom
    Initially I bought the cast iron pans but research says that once they get "seasoned" they are sealed and the iron doesn't leech into the food the same way.
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