Jump to content

sugarsue

Advanced Members
 View Profile  See their activity

  • Posts

    267

  • Joined

  • Last visited

  • Days Won

    1

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by sugarsue

  1. sugarsue
    The only thing different I can think of is she did have a bag of Cool Ranch Doritos but her sister is a gluten detector and she didn't get sick from them. But I normally do not let them eat chips that are flavored like that. Otherwise, I can't seem to think of anything else, unless there was something I missed in her halloween candy. What about the cold...
  2. sugarsue
    Hi! I found this article tonight. Your question interested me because I've been having RLS type symptoms lately. Interestingly enough, my ferritin is low so maybe this is why so this article helped me although I am allergic to wheat and do not have celiac's. Maybe it will be helpful for you. Open Original Shared Link
  3. sugarsue
    A little over a year ago, my then 7 yr old daughter was covered with molluscum and eczema and what I always suspected was DH but it was never confirmed and I really didn't know. In December 2008 she went gluten free and all of her skin issues resolved completely. I know we have had accidental glutening over the past year witgh sauces at restaurants or...
  4. sugarsue
    Please someone correct me if I'm wrong... but it's my understanding that the genetic tests show whether you have the Celiac gene but does not diagnose celiac. Did you get a diagnosis from a doctor? Can you find out the name of the test? We have not done genetic testing but I've always been interested. Susan
  5. sugarsue
    Hi, I'm sorry, I have not been around lately so you may have already answered these questions.... I assume you had a Celiac panel blood work done? What were your results? You can be non-celiac gluten intolerant and suffer as much as if you were diagnosed with Celiac. Many doctors don't get this. Also, I imagine you could still have Celiac with a negative...
  6. sugarsue
    Oh yeah, the deteroriation of hand writing is a very clear sign. He sounds very much like my girls. I think you are on the right track. Don't get discouraged if your doc's don't agree. Keep on looking for a good doc who will really look into this. The long term antibiotics is what will help protect him! Susan
  7. sugarsue
    Try this... Open Original Shared Link I logged out, maybe since I was still logged in it didn't like that link. I find it interesting that you have hashimoto's. I do too. Susan
  8. sugarsue
    Thanks, she has been gluten free since December and she really improved a lot. I never put her existing symptoms in with gluten though and now it really is seeming like it's related. Thanks a lot!
  9. sugarsue
    Oooh, interesting, I put that on there just to name them all but I will pay attention to see if I notice it again. Thanks.
  10. sugarsue
    Hi, thanks for reaching out. Not many people know about PANDAS, doctor's included so it can be difficult. I had never heard of it until March of this year and my girls have had it since age 1! Check out this forum, it's the best as far as experienced PANDAS parents. You can read through the posts to see if the symptoms speak to you. You can also find...
  11. sugarsue
    At our lab, IgA low range is 34. My dd8 has an IgA of 37 and dd6 an IgA of 64. Our doc considers both of those low even within the "normal" range. My dd8's IgA went from 42 before gluten-free to 37 9 months later. Susan
  12. sugarsue
    Hi everybody...I've been gone for a while since my kids have been diagnosed with PANDAS (autoimmune condition associated with Strep bacteria) and I've been researching and learning about that. But recently I've been getting back onto the Celiac path and have a couple of questions for you. Both my girls have low normal IgA and elevated AGA IgG. Their...
  13. sugarsue
    I just found out this weekend about the rest of the flavors going gluten free and I practically jumped up and down in the store. I hope they treat us fine at our house. It was HUGE news for us! So far we've only tried the corn and honey nut. Did all the flavors go gluten free? How smart of them! Susan
  14. sugarsue
    My dd (6) went gluten free last September. She just had a completely normal EEG showing no seizure activity! We are slowly taking her off her medication. She's had her seizures controlled by meds for over a year. They don't know if the gluten was causing her seizures or if her brain just learned how to fire right. Either way, I'm very happy! Our...
  15. sugarsue
    Good luck to you and your son. I worry about growth too in my almost 7 yr old daughter who just barely made it over 40 lbs and is 6 inches shorter than her sister who is only 1 yr older than her. She has started growing and gaining weight since going gluten free but for us it's still slower than I would like but I keep hoping that it will pick up. HUGS...
  16. sugarsue
    Thanks Peter, I didn't know that about the B12 but luckily we are waiting to find out her test results on this too. She was also low in Biotin which I heard can also sometimes cause seizures. She had (has?) many malabsorption issues. Hopefully resolving now! Susan
  17. sugarsue
    Oh, I have not watched these yet (I will tonight when I get home) but I think this is the episode a friend of mine saw on MD that got us on the gluten path. She came to work and told me about the episode and thought it sounded like my dd. Thanks for reminding me. That was several years ago now! Susan
  18. sugarsue
    Hello, if the IgA comes back normal, I would like to refer you to a book called Healthier Without Wheat by Stephen Wangen. This book is dedicated to non-celiac gluren intolerance and it (along with my many questions to this forum and google searching!) helped me understand my daughter's positive antigliadin IgG and that this meant that she was gluten intolerant...
  19. sugarsue
    Awesome! Congrats on one year! I agree, it does get better with time and does seem pretty normal now. Her weight gain and growth is amazing. I wish we would see that at our one year mark but it's not looking that way. GOOD JOB Mom and Daughter! Susan
  20. sugarsue
    My dd(6) has an EEG scheduled for June 1st. With her seizure meds, she's been seizure free for over a year now. Our neurologist leans towards believing the gluten intolerance is what was causing her seizures. She's been gluten free for about 8 months. If the EEG shows no seizure activity, he will start to take her off her seizure meds. I'm terrified...
  21. sugarsue
    Patty, thank you for your response! We have been helped so much by going gluten free but it has not solved all of our issues either. Tonight I am thinking one has pandas but my highly gluten intolerant dd, I just don't know. I don't see as much up and down with her so she may just have her issues that will hopefully continue to improve as she gets older...
  22. sugarsue
    Just wondering if anyone here has any experience with the autoimmune disease PANDAS with their children. Both my girls may have it and I am curious to talk to anyone who has children with this and gluten issues. Thanks. susan
  23. sugarsue
    My 6 yr old is highly gluten intolerant (possible celiac) and can't have even a spec of gluten. My 7 yr old is not as sensitive but her symptoms have been greatly helped by going gluten free. I am allergic to wheat. I never restricted it before I learned about the girls, thinking it didn't really affect me. But I found now that I don't eat it, I get horrible...
  24. sugarsue

    ARCHIVED Melatonin

    sugarsue replied to Lexi's topic in Related Issues & Disorders

    My bottle does say for adults only and not intended for children which is another reason I worried about it's use. Luckily for me, her neurologist and peditrician know we use it and agree it's safe. I remember my mom used to give me wiskey and honey when I was sick. LOL Susan
  25. sugarsue

    ARCHIVED Melatonin

    sugarsue replied to Lexi's topic in Related Issues & Disorders

    Hi, I have to tell you, I struggled with this question too. I have Hashimoto's, an auto immune disease and my girls may or may not have celiac's. But we have totally embraced Melatonin. I need it, my girls need it. Without it, we may never go to sleep. Plus, it seems to help their behavior during the day. They can tell when they need it, when they...
×
×
  • 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.