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sugarsue

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Everything posted by sugarsue

  1. sugarsue
    Another thought about feeling weird and standing out..... I feel this way any time I take my kids to McDonalds. Of all the places, I figure the service people there won't get it. I mean, who orders a Happy Meal with meat only, no bun? And everyone is in a hurry and listening to everything I say. Then I have one girl who wants the hamburger meat with...
  2. sugarsue
    Oh my heart aches for you. I am so very sorry for the complete lack of support you are getting from your family. I hope someone steps up and educates themselves and becomes an ali so you do not feel so alone. I am feeling angry now at their reactions. I know things will get easier for you as you adjust to the diet, even if you don't get more support...
  3. sugarsue
    Oh interesting question that I have not thought about yet but now I will It does seem, now that I am thinking about it, that her other "seasonal" type allergies are not too bad right now (they are starting now). She is so allergic to dustmites and the low humidity levels have kept them at bay I think and they probably haven't gotten bad here yet. ...
  4. sugarsue
    Curious, if non-celiac gluten intolerant, I guess you won't have the gene but still can't tolerate gluten right? That's why I'm thinking the test would help know if my dd has celiac but won't help solve her gluten issue so I get confused about whether to spend the money. I think in your case with a celiac son, I would test my other child. It would really...
  5. sugarsue
    I have not done it yet but I've thought about it a lot. With my 2 girls who obviously need to be on the gluten-free diet, I go back and forth. If I could do genetic testing to rule out celiac, then I would at least know we are dealing with intolerance and not celiac. But if it came back with the marker, then I would be where I am now, not really knowing...
  6. sugarsue
    I wish my boyfriend would give up wheat, now for more reasons that one!
  7. sugarsue
    Hi, your daughter is so cute! Thanks for posting the pictures. I have a couple of questions based on what I see that may seem random.... Have you ever cut her hair? Were/are her teeth slow to grow in? Does she have dark circles under her eyes? In one picture it looks like she might have circles... If so, this turned out to be a major issue with...
  8. sugarsue
    Super Duper Big Cyber Hugs to you and your son! My daughters are younger so I'm sure that makes it easier since I still control much of what they do. But if you can control his food for a good amount of time to get the gluten out of his system, after an "accidental" glutening, he may change his attitude about it. I agree with the other posters that he...
  9. sugarsue
    We did have the area cultured (very traumatic!) the first time but not the second time. If it gets full blown again, I'll take her back to the doc to see what he suggests. Before we went the first time, I thought it was probably yeast but then it got so bad I didn't know what it was and was surprised that it came back as strep. Thanks!
  10. sugarsue
    This is my 7 yr old daughter exactly. She tests negative to Celiac in her blood test so we did not do a biopsy. Her Dermatologist said her skin issues were not DH (although again she had no biopsy). But, everything clears up when she does not eat gluten and she feels sooooo much better. Can you imagine a 7 yr old voluntarily giving up gluten? Even she...
  11. sugarsue
    I don't have much to offer but your question is interesting to me since my dd6 has had recurring strep in her lower private area since going gluten free. She's gotten it twice and may have it again since going gluten-free in September of last year. Weird.
  12. sugarsue
    Hi, first of all, BIG HUGE HUGS TO YOU! As a single mom to 2 beautiful girls, I know you want and need to feel your best. I wish you the best of luck in figuring out what is best for you and your family life. In my signature you will see that I am allergic to wheat. I am not celiac or gluten intolerant that I am aware. I never would have gone gluten...
  13. sugarsue

    ARCHIVED Diagnosis Of Dh

    sugarsue replied to rvp's topic in Dermatitis Herpetiformis

    Oh I am so sorry this has happened to you and I hope someone more informative than me responds! I fear this happening to my daughter some day although she was not diagnosed with DH. She has a doctor who is very supportive of the gluten free lifestyle for children with ADHD issues so he was pushing the "diet" anyway. Then she has these skin issues which...
  14. sugarsue
    One thing that I think is so cool is that you can eat whatever suits you best and you don't have to have a doctor's permission for it. Once you decide whether you need a diagnosis or not for yourself, then you can do the diet and feel better. You don't need gluten to live a healthy life and if it takes away your symptoms, it's well worth it. I have...
  15. sugarsue
    Our school district gives us the monthly school lunch with all the gluten and dairy options crossed off so we can see what my girls can eat. If there is not an option for them that day, they will always have ham or turkey for them in the event that they want to buy their lunch. Luckily for me, they usually would rather bring (it probably makes them feel...
  16. sugarsue
    Interesting, seems to me a growth doc should be very well versed in celiac since it affects children's growth so much. I can only imagine how annoyed and frustrated you were when he questioned your diagnosis! I am glad you will be such a wonderful and educated advocate for your son!
  17. sugarsue
    I have used MF with great success (lost 68 lbs in 5 months). I am allergic to wheat, I am not celiac or gluten intolerant so keep that in mind, but I do get very itchy when I consume any wheat, even in small amounts. I ate the bars, shakes, puddings, oatmeal and hot drinks with no trouble.
  18. sugarsue
    She is diagnosed non-celiac gluten intolerant by blood test last year (age 6). I did not do a biopsy on her, I don't believe it would have been positive at her stage anyway so I will always wonder.... But she is so sensitive to gluten that I have to be very careful of cross contamination or she is affected. I started seeing her seizures at age 3 but didn...
  19. sugarsue
    It reminds me of something about my oldest daughter. She would do this (chew and spit or drink and let the liquid drip out of her mouth without swallowing). She would also stick her fingers down her throat to gag herself and laugh (creepy). She has sensory processing disorder. What are the rest of his symptoms? Open Original Shared Link This...
  20. sugarsue
    Wow, you just reminded me that when my daughter was younger, while she was still having seizures and before going gluten free, she used to tilt her face up to the sky and say that she could feel God touching her face. She spoke of reincarnation at a very early age before she had ever heard of the topic anywhere. I always wondered if her seizures were giving...
  21. sugarsue
    Hi, My dd (6) has seizures but our experience probably won't be helpful since it's not directly related. She is on 2 types of meds and has been seizure free for almost 1 year. It took us almost a year before we found the right combination of meds that worked for her. Her Neuro believes her seizures may be gluten related but we have not made any changes...
  22. sugarsue
    Sierra's Mommy, I love your dd's name by the way, that's my 7 yr old's name too! Glad you got the biopsy moved up. Good luck with it all!!
  23. sugarsue
    Although I am sorry your daughter has celiac, congratulations on the diagnosis. You should start to see improvement soon and it will just continue to get better and better. Plus, what seems hard right now regarding sticking to the diet will become second nature. You will be an expert! My daughter had many of the symptoms you mention Her bad gas and...
  24. sugarsue
    The "new normal"... that's what they say with grief too. That we will never be the same but there will be a new normal when we can move on and heal. I see that with my dd (6) too. She grieves over the loss of gluten, over the loss of being able to eat whatever her friends eat and then she's waiting for her body to get back... to normal. Susan
  25. sugarsue
    Super big hugs to you! Sounds Celiac to me.... I wanted to mention that I had the butterfly rash on my face and they thought lupus but it turned out to be hashimoto's thyroiditis. GOOD LUCK with it all!
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