Jump to content

africanqueen99

Advanced Members
 View Profile  See their activity

  • Posts

    268

  • Joined

  • Last visited

  • Days Won

    5

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by africanqueen99

  1. africanqueen99
    The suggestion is one serving of gluten daily for six weeks. The more gluten the better, though.
  2. africanqueen99
    As I said before, I have two kids DX without being scoped - it's not the golden standard anymore, but blood tests are used by all the mainstream medical community. I think it would be a challenge getting a true diagnosis without blood. I realize you would like to avoid the trauma of blood work, but that doesn't have the same potential of complications...
  3. africanqueen99
    See the GI first and then figure out your ex. Two of my kids were DX without scopes (one didn't get one based on age, the other was negative, but clearly celiac). It is possible to go on blood alone - so the GI may require more tests.
  4. africanqueen99
    He will be sedated, but the good news is that if he can take the IV without a fight he will have less anesthesia than younger kids and wake up ready to go. My 7.5 y/o was told to stay out of school all day - she totally could have gone and participated in all activities!
  5. africanqueen99
    My middle kid was scoped at 3.5 years. Child Life came in to help him prepare (put stickers on gas mask, etc) then he was taken and gassed before his IV. Because he was gassed he had so much medication in his system that it took him quite a bit to wake up. I was promised a huge nap that day - he slept not one minute!! Overall, the experience was fine...
  6. africanqueen99
    I don't know anything about the relationship of thrush to celiac, but I wanted to share a link that has helped me...just in case you're interested. My second child and I had an insane case of thrush when he was a few months old. Because he was a crazy nurser we couldn't get rid of it and tried EVERYTHING. Eventually I found this link (Open Original...
  7. africanqueen99
    Snow mom - make a point of walking past the Go Packs whenever you're in a Target. They regularly go on sale for $2.88/box. That's when I stock up!
  8. africanqueen99
    ^^^ I think the guideline is basically the GI's call. Our GI didn't test the 1.5 y/o because of age, stress on the body for little chance of seeing damage, etc. She was also willing to DX the 7.5 y/o based on elevated blood levels (in that weird window of going either way) and lack of growth without a scope. I asked for the scope on her, though - just...
  9. africanqueen99
    Can you find out if the hospital has a Child Life department? They'll send someone to hang with him and talk about the procedure, play games, etc. Totally kid friendly. My oldest was nervous for her biopsy, but rocked the IV without a tear b/c they explained the process to her and she watched the whole thing. My youngest was given a mask to decorate and...
  10. africanqueen99
    This June is going to be our first "Celiac" flight, but I plan on running it like all the others that I've done over the years... Each kid carries their own backpack filled with things they choose (oldest takes old iPad, books, journal/pens, middle takes matchbox cars and playmat, crayons, youngest has a few trinkets), an empty water bottle and a bag...
  11. africanqueen99
    Thanks for the lead! It still is and I'm going to make a huge batch of bubbles soon. Come on Spring!!
  12. africanqueen99
    I am on the hunt for gluten-free dish soap because it's bubble season again and we make our own. Since the kids are playing in them and running through them it seems essential that they're safe. It hasn't been easy finding options though!
  13. africanqueen99
    I am a F'ing squeeky wheel that they tolerate to shut me up... Seriously, I don't ask for things - I explain what I would like and why (I'm midwestern so it's a skill to continue being polite while talking people into things). Over the years I've had physicians not work with me. So I ask for copies of my chart and fire them. I've fired a LOT of doctors...
  14. africanqueen99
    I know way too much about TSH as a former thyroid cancer patient. First thing - it's good practice to always get blood drawn at the same place to verify they're using the same standards and ranges. Second thing - his TSH is shockingly high. "Old school" physicians tend to use the .3-3.0 range, but the common current standard (by thyroid specialists...
  15. africanqueen99
    Oh, I should have mentioned this above, but our ECC is through our school district and they bought all new playdoh tools for my kid in a box labeled "Gluten Free/Celiac". They are prepared to move the box up with my youngest as she moves, but if another Celiac shows up we will share. The alternative is for me to purchase all tools, playdoh making equipment...
  16. africanqueen99
    We have an "agreement" with our Early Childhood Center because my youngest is currently only in Mom & Me classes (so I'm there). She starts Kids Morning Out in the fall so we are putting her 504 in place this Spring. Things we are addressing: - only food from home and either NOT touched by any adult or served first - her eating space needs to be...
  17. africanqueen99
    I do trust the gluten-free cereals - my kids will eat gluten-free rice krispies and all of the gluten-free chex flavors. We haven't tried Fruity Pebbles, but I imagine that my three kids would polish off a box in one sitting... My house is 100% gluten-free (minus beer and my husband's shaving cream) and I do NOT allow foods processed in a factory with...
  18. africanqueen99
    Are you planning on notifying the teacher? He needs to know that the product wasn't safe for her! It's possible that he looked at the ingredient list and it passed par, but people that don't live this life have NO idea that a "gluten free" labeled product isn't necessarily gluten-free. Speaking to him wouldn't be a negative - it would give him guidance...
  19. africanqueen99
    Does your school district include verbiage of disability in their bullying policy? I feel like this is already covered for us.
  20. africanqueen99
    We don't have verbiage like that in C's plan, but I brought it up at the 504 meeting (Principal, nurse, counselor and head of medical services attended) explaining that kids harming my kid is a huge deal. C is a really open, super engaging 7 y/o so she's pretty open to telling kids (that want to hear) what happens when she's glutened. When she was pretty...
  21. africanqueen99
    Here too... We had an early dinner at a local place (owner's daughter has celiac so they train all employees - and have a fairly extensive gluten-free menu) - 4-5ish. Vomit started around midnight and she puked over and over again for ten hours. When it was over she was starving (which is NOT normal for her after being sick). We know it was a good...
  22. africanqueen99
    My almost 8 y/o (DX at 7.5) saw the GI when she was 5 for unexplained stomach aches. I was told it was likely growing pains and sent on my way. Fast forward 2 years and my youngest was DX so the oldest was tested again - BAM - Celiac. I don't know how much the blood test will cost, but, IMO, there is no harm into having a simple blood test. It might...
  23. africanqueen99
    Hi Stacie - I'm Angela. Man alive, I so remember that feeling of "What the hell am I supposed to do now?!" along with "Thank god we finally know what to do now!" I know it feels like such a huge change of life, but you'll get through this - just like we all are. You are going to have to overhaul a lot, but the good news is that the learning curve is...
  24. africanqueen99
    <--- Chronic physician firer... I feel you. It's a shame that they are making you jump through the dog and pony hoop. You are the mother - you get to decide what tests you'd like.
  25. africanqueen99
    Since she's still a baby there may be a lot more leeway. For example, our whole celiac journey started with a baby less than 18 month that had incredibly high blood numbers. So her siblings were tested. They were both scoped, but the baby wasn't. Our Ped GI though the scope would be much on her little system - so she said we could talk about scoping in...
×
×
  • 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.