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Celiacs possible dx - few ?'s

Discussion in 'Parents of Children with Type 1' started by SarahKelly, Aug 6, 2013.

  1. SarahKelly

    SarahKelly Approved members

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    Last week we found out that Isaac's initial blood test results show he has celiac's disease. For some reason I do not have the paperwork, but remember the number being 179 (with typical 6-19.9) - I can't even remember the name of the test, it was a weird moment for me.
    Anyhow, I have a few questions now that I've done all that horrible google searching :)
    1) Post celiac bloodwork that came back positive did you have your child continue a gluten filled diet so that you could do a biopsy?
    2) From what I have found a biopsy is not needed (if the right bloodwork is performed), anybody else find this and then decide to not do a biopsy?
    3) Do you worry about cross contamination at your home?
    4) Did your whole family go gluten free?
    5) Did the rest of your family get bloodwork done to see if they may have CD, too?

    And is there anything else I should know before our GI appointment in a few weeks.
    Thanks a million for your input, you guys are always an incredible wealth of knowledge for me.
     
  2. manda81

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    1) Continue gluten until you are certain more diagnosis is not needed.
    2) We did not do a biopsy. We already suspected Celiac in our youngest. When our oldest fell off the growth charts, and had lab test confirming, that was enough for us as well.
    3) Yes, and we work hard to keep things separate. Our home is about 90% GF.
    4) No, my husband & I aren't. I cook GF meals at home, but he takes regular bread sandwiches to work, we keep separate crackers, snacks, etc.
    5) Only the siblings, my husband & I have not had the labs.
     
  3. SarahKelly

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    Thanks Amanda, I suspected that Isaac had celiacs, too. I am thankful that this isn't a path we'll have to navigate alone.
     
  4. Caldercup

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    It was probably a TTG (part of the "celiac panel" as listed on many blood work requests. A normal reading is below 20, but you'd want a celiac on a gluten-free diet to read in the zero or >3 range, depending on the lab.) A 179 is clearly very high and why they are saying there's likely a celiac diagnosis in your child's future.

    I think my son was 1250 or something ridiculous. I'm surprised they even wanted to do the biopsy with my son -- though a biopsy was still considered the "gold standard" back in July of 2009 and our GI insisted on it. Now, doctors are more willing to diagnose based on the blood work.



    Also, while I would love to be able to eat gluten again -- and I was one of those people absolutely dreading going GF -- our family came out the other side of that diagnosis totally okay with what our lives became.

    As a qualifier, I should say that we'd already gone the route of no processed, packaged foods (because of movies like Food, Inc, etc., which opened our eyes!) and we rarely ate out. I had already begun doing all the cooking in our family, so it wasn't a hardship to just remove the gluten-containing items from our pantry and move ahead.

    Yes, the GF substitutes aren't as tasty as their glutenous counterparts, but we didn't need to eat Oreos, anyway. Tamari instead of soy sauce was an easy switch-out. We bought a breadmaker and I buy Pamela's bread mix in bulk from Amazon. I find Pamela's pancake mix tastes even better than the pancakes we used to make with gluten-containing flour. King Arthur's chocolate cake mix is awesome, and Betty Crocker's brownies taste just as good as their standard brownies.

    Eating out is fairly rare for us, but there are some chain restaurants we like (Uno's uses Udi's buns now, PF Changs has great GF handling procedures in place, etc), and the smaller chef-owned places have been great for us. You just have to be willing to talk to servers, cooks, and chefs to get a sense of whether you'll be treated with respect and patience. If not, get the heck out of that restaurant and don't give them your money.

    Good luck!
     
  5. SarahKelly

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    Thank you Eileen.
    To be honest I am pretty sure that I have some sort of gluten intolerance or more, too. As does my mother and sister. So...we know who shared those fun genes :)
    I am not worried as we, like you, have cut out a lot of processed foods. I am more concerned about the ability to navigate through a proper diagnosis with at little invasive testing as possible for both of our boys.
    And with Isaac starting Kinder in the fall it just feels like one more thing to really get figured out, but in the grand scheme of things it is okay if it takes a bit longer.
    I also wondered about how your child's BG #'s were post switching to GF. Currently there are times when we don't cover meals and I am sure it's because he's not absorbing much..but I imagine that changing quickly. Did you see any change?
     
  6. Caldercup

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    We did have to make both basal adjustments and insulin:carb ratios after a few days on the GF diet. Once his gut began to heal, he definitely began absorbing more carbs. After about two weeks, things really stabilized and we were able to stick with the new settings. (My son had shifted to a pump about three months before the celiac diagnosis.)

    The thing I liked about seeing more stable BGs after going GF was that there were no further unexplained lows after eating. Before going GF/having the gut heal, we could dose for something the same way we had for weeks and weeks, and suddenly he'd drop like a stone. (We later figure out it was because he'd had pizza or something majorly glutenous the day before and the gut was in total meltdown.)

    He also started growing like a weed. (He was 12 and a half at the time, and I think he grew four inches that year after going GF. I don't know whether it was due to the celiac being resolved by the GF diet, or if he was just due for the growth spurt, but we did welcome it.)
     
  7. Meredithsmom

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    We continued on gluten until the very minute we were told to eliminate it! I insisted on the biopsy and repeat lab work. I was happy to be in denial and I wasn't making another HUGE lifestyle change without being 100% sure that the dx was correct. I do worry about cross contamination. Meredith doesn't have CD symptoms (and never did...hence the denial) so I really don't know if she is getting it until her lab work. Our family doesn't eat 100% gf, but some things we all eat gf. I do not bake with regular flour. I don't have any wheat in the house. But, we eat regular bread. We have a seperate toaster for gf bread and g bread. I had my 2 other kids tested right away and my husband and I were tested at FFL in July. So far no one else has had abnormal labs.

    We got Meredith's official dx about 5 days before she started Kindergarten. She did great through all of the tests and the biopsy. Since she was 5 at the time, she did not have to have the prep that an adult has. It went easier than I expected.

    We are here if/when dx is confirmed.
     
  8. SarahKelly

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    how do you go about having your whole family tested, too. I emailed my doc and she seemed unsure of the necessity of it, if she doesn't order the labs how do I go about getting this done. Sometimes I wish we were able to order labs ourselves, I completely understand how this could get out of hand in the general public, but if one doctor thinks it's necessary shouldn't they be able to order labs for the family...so many hoops to jump through sometimes!!!
     
  9. Meredithsmom

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    Our peds GI doc works with our pediatrician. The GI recommended to the pediatrician that my older kids get tested. When I called the peds, they ordered the labs. The peds GI and I talked about this before I called and he said he would follow up with pediatrician. My doc didn't think I needed it but would have ordered it if I wanted it. When the older kids were last to the pediatrician, he recommended that they be tested again in a few years, sooner if symptoms occur. He has never recommended they be screened for T1D. I found that interesting. Maybe he thinks I will know the symptoms and test their bg at home!
     
  10. Caldercup

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    I would just tell my primary physician that studies show it runs in families and you want it checked out. If they want further support before writing the lab slips, then I'd have your endo team or the GI team send out a letter.

    Good luck!
     
  11. Caldercup

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    Also - a big shout-out to Cup4Cup flour (by Lena Kwak at the famed French Laundry restaurant owned by Thomas Keller)...

    It's expensive and only found on-line or through Williams-Sonoma (as far as I know), but it's worth it when it comes to baked goods. My results have been awesome.
     
  12. SarahKelly

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    Thanks for the info.
    I'm also getting a few cook books that my friends sister (whom has celiacs) recommended.
    This is just going to be an adjustment period for sure.
     
  13. Caldercup

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    I would recommend seeing if your library has them -- I spent a ton on gluten-free cookbooks, and I now only really rely on one or two, tops.

    Also, America's Test Kitchen (my FAV cookbook writers) are coming out with a GF cookbook soon. I'm saving my pennies for that!
     
  14. Sarah Maddie's Mom

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    Just an FYI, it's "celiac" disease, not "celiacs" ;)
     

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