Jump to content

mamaupupup

Advanced Members
 View Profile  See their activity

  • Posts

    279

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by mamaupupup

  1. mamaupupup
    Yes! That's a record! And congrats! I love your attitude! We've gone from "blame it on the kids" to "blame it on the gluten" here as well! Thinking of you!
  2. mamaupupup
    Hi there, So glad to hear your husband is committed to being gluten-free! That's great! Now he can be a role model for my husband! Both our girls have been gluten-free for about 10 weeks now. Just the other day I noticed that both had distended bellies. I've been wondering what caused that. I don't think that it was gluten--we've been excellent at...
  3. mamaupupup
    I wish I could say I had followed your path. I had no idea that Celiac and Infertility were related at the time I was TTC. I'm writing you to let you know a nice outcome from infertility... We have fraternal girl twins concieved through IVF/ICSI and PGD under Dr. Schoolcraft's guidance at the Colorado Center for Reproductive Medicine. Dr. Schoolcraft...
  4. mamaupupup

    ARCHIVED SoCal Ped GI's

    mamaupupup replied to stacytr's topic in Doctors

    I had a really difficult time getting an appointment. I probably called a dozen times. I pointed out to them that I was feeling like I was poisoning my child and making her sicker keeping her on gluten while I waited for an appointment. I ended up talking to a supervisor, which isn't how I got the appointment...but at least I felt heard! Here's what...
  5. mamaupupup
    off to rush to make dinner for/with in-laws...so this is quick... Totally agree with 1974 girl! And, I followed her path too--we had positive bloodwork and genetics and opted to scope (for both girls and me...). In terms of household...whatever you decide is doable. I suggest making that decision once you know how many people in your family...
  6. mamaupupup

    ARCHIVED SoCal Ped GI's

    mamaupupup replied to stacytr's topic in Doctors

    Yes, that is right. You ARE a confirmed Celiac case!!! All we had was positive bloodwork for one child!
  7. mamaupupup
    Hi Stacy, Lots of great feedback here--and I agree with all of it. Not to startle you, but please also alert your pediatrician and the Ped GI you choose about the frequent urination. Frequent urination and lots of thirst can be two symptoms of Diabetes. There can be a link between Type 1 Diabetes and Celiac. Please make sure they do all the testing...
  8. mamaupupup

    ARCHIVED SoCal Ped GI's

    mamaupupup replied to stacytr's topic in Doctors

    Hi Stacy! Long day! No, I don't know the others... We would fly, drive, paddle, scooter to see Dr. Pietzak. I can't imagine any other So. Cal doctor being as good. She is a Celiac nerd and knows the disease better than anyone really I've come across. Plus, she is a Mom. Plus, she is in charge of the CHLA nutrition program (which means the nutritionists...
  9. mamaupupup
    ...I wish I had more time to write...here's the quick version: - You are probably spot on and identifying this really early: be so proud of your mothering!!! - Find the BEST pediatric GI who is a Celiac researcher ASAP And, lastly, yes, I had all the wake up screaming...with my twin girls. Yep, twins. Thank God they weren't triplets. I'm still tired...
  10. mamaupupup
    Hi Stacytr--I posted a response under your doctor post, so I won't repeat it here. Just to add, both our girls (twins) are teensy: 32 lbs and 34 lbs at time of biopsies. Also, to add to your list of doctors to consider: Dr. Drew Kelts at Children's Hospital in Santa Barbara at Cottage Hospital. He is well respected by Dr. Michelle Pietzak at Children...
  11. mamaupupup
    Our kids were diagnosed with Celiac Disease in March (we knew it was coming based on test results, genetics, symptoms, etc). Then I realized it was my turn to go see a good GI. That good GI took one look at my husband's genetics and said, "He's not out of the woods! He needs to see me." Of course, it's been a month since then and my dear husband is still...
  12. mamaupupup

    ARCHIVED SoCal Ped GI's

    mamaupupup replied to stacytr's topic in Doctors

    Hi there, First, welcome! And, if your dauhter has a high TTG lab result, it is unlikely it is a false positive. Personally, I would RUN, not walk away from Dr. Bahar if he insists you HAVE to do a biopsy. All the medical journal studies I have read indicate that TTG is highly specific and highly sensitive for Celiac Disease. Even wikipedia gets...
  13. mamaupupup
    Hugs Hugs Hugs!
  14. mamaupupup
    ...And when you call the Celiac centers make sure you say: 1. We have a family history of Celiac Disease 2. My daughter has had a positive TTG test 3. She is symptomatic: She is 3 years old and wears 6X clothes because her tummy is so distended 4. We've taken her off gluten I personally would not mention the negative biopsy when you are trying to...
  15. mamaupupup
    Your plan sounds really solid! Do your very best to find all the hidden sources of gluten too...playdoh...dogfood...fishfood...soy sauce, etc. I just glutened my kids today...shocked...trusted another "gluten free" Mom's bread...ugh!!!!!!!!!!! Here are two Celiac centers from the Celiac Disease Foundation website. I'll see if I can find out specifically...
  16. mamaupupup
    I'm so sorry! Thinking of you all! Hugs from afar... Miracles do happen!
  17. mamaupupup
    I should add: We have fraternal twin girls with Celiac. I couldn't have figured out our puzzle without a great GI. We travel 100+ miles each way to see her. - Before we found our awesome GI, our symptomatic daughter came back with a negative Celiac panel (I had restricted her gluten intake). At that point (since she was negative for Celiac) I let...
  18. mamaupupup
    I agree with Cara (wish you were my next door neighbor!). Also, we have an excellent pediatric GI in Los Angeles--Dr. Michelle Pietzak. She is also a Celiac researcher. If you live within driveable distance to a Celiac research center, go there. If you are willing to let me know what area you live in, I'll do some legwork on which pediatric GI is well...
  19. mamaupupup
    Hi Misty, Try posting this in the kids section--you might get some additional feedback. Our house has been down the opposite path...kids got diagnosed Celiac, now it's my turn to test! - One of our girls complained of stomach pain daily--no pattern I could figure out. She has Celiac, plus low digestive enzymes and gastritis--all diagnosed from the endoscopy...
  20. mamaupupup
    Yes, it's hard to know what "good normal" is until "bad normal" is a thing of the past. I have two kids with Celiac and it's my turn to test...I had no real understanding of my symptoms until I went on a (nearly) gluten-free diet and then started gluten loading for my testing. On gluten I have lots of issues which I historically considered "normal." Yes...
  21. mamaupupup
    Hi there, My two kiddos have Celiac...and so I'm testing now too. The GI asked me to continue eating gluten (I've been way way low gluten, especially since our house is gluten free for the kids). Any ideas on what foods have the highest gluten content? Trying to get a good bang for my buck... Thanks!
  22. mamaupupup
    I ditto what Cara said! I have one Celiac child whose TTG doubled in three months and was just UNDER the top of the "normal" range and the excellent Ped GI we have said a rapidly increasing TTG is enough to cause alarm. She is symptomatic and has a twin with Celiac, has the genes herself, has two parents with genes, two cousins with Celiac, does better...
  23. mamaupupup
    Hi there, Our local pediatric GI believes elevated TTG is enough for a Celiac diagnosis. It's certainly enough for a Mom to decide to go gluten-free for her kids What it may not be enough for is to get a 504 plan/ADA help in dealing with schools. If you look up TTG and the accuracy/specificity it is an excellent test. We have twins with...
  24. mamaupupup
    Hi there, I'm a Mom with Celiac twins. We have been lucky enough to have help off an on since the girls were born . I would be fine if a babysitter/Nanny said to me, "I have a gluten sensitivity. May I make them x, y, or z instead of a, b, c for lunch?" I'd also be fine if she said, "I can't bake cookies, but I can make fruit salad with the...
  25. mamaupupup
    Hi Minette, I know-the wait is terrible. I did one thing to ease my mind in terms of the kids: I made gluten free dinners. One of my girls' joint pain improved a bit. I did a lot to make myself feel better: I started cleaning! I put all things with gluten in a box in the corner of the kitchen...I cleaned cabinets...I researched for a new toaster.....
×
×
  • 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.