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Christina.V

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  1. I was asymptomatic prior to Dx, so my will power does fail me from time to time. Last week I was at a football game and incredibly hungry. Of course stadium food is the worst so I caved and at a piece of pizza. Then, this past weekend I ate one of my mom's homemade flour tortillas (they are the #1 thing I miss the most).

     

    Both times I did wind up having some stomach cramping. I consider myself incredibly fortunate because that's ALL I had. Of course, now, my willpower is in check for the upcoming holiday challenge!


  2. I was told today that the Red Robin seasoning has gluten. I'm fairly new to gluten-free so can someone tell me which of the listed ingredients (if any) is the culprit? The label doesn't indicate gluten...

     

    Salt, Spices (incl black pepper, celery seed, cumin, oregano, sage), dextrose, dehydrated garlic and onion, paprika, autolyzed yeast, dehydrated tomato, hydrolyzed soy protein (carmel color), natural flavor (smoke). CONTAINS SOY


  3. Labs have different ranges. In this case <15 is a negative. So the 27.6 number on the TTG IgA is not "highly" elevated. The recommendation is coming from two of the top specialists in Colorado. I think I said this before, but the worry is that we actually have caught it too soon to tell, and that long term a false negative diagnosis will be more detrimental than holding off. I agree, because IF she does have celiacs and gets a false negative, the co-parent will fight me on getting her re-tested in the future.

     

    I am actually comfortable with waiting for 6 months. We share custody 50/50 and have shared decision making as well. I don't see how a judge would dictate that the endoscopy be ran with so much medical advice to the contrary. I was extremely frustrated a couple months ago BEFORE we met with the doctors. They said they've seen these numbers go back to normal over a short period of time, hence the 6 months. I'm hopeful that they do.


  4. I am one of the "silent" cases for sure, so I did voice the same concerns as you all are pointing out. Not only is she not showing severe symptoms, but she is also on track for her growth charts and her numbers are slightly above normal (not in the 100s). The decision to hold off was not made lightly! The hope is that her numbers may normalize. 

     

    The co-parent does need some education on it, however, without very strong direction from the specialists at Children's nothing is going to change. I can give him as much information as possible, I can preach until I'm blue in the face.

     

    Thanks for caring! It's so nice to have a community like this!!


  5. My diagnosis came a couple weeks ago after bloodwork and a biopsy (a hepatologist performed those). I have a referral to a GI doc but not until Mid-july. I have an appt with my PCP in a couple of weeks, though, and I'm planning on asking about additional bloodwork that might need to get done. 

     

    Recommendations on what tests to get? I don't prefer waiting around for the doctor to tell me what to do, I'd rather come in prepared! I've read that I should have some vitamin levels checked but am unsure which ones. 

     

    And, yes, of course I'm gluten-free now as well. Making that change hasn't been all that difficult but it's only been two weeks.


  6. 6 months is a long time to eat gluten for a celiac.  Would it be possible to eat gluten everyday and then retest at 8-12 weeks? Get all the tests done, especially the tTG and DGP ones? 

     

    That's just so long to not feel well... :(

     

    Fortunately she doesn't feel sick every day. And I don't intend to have gluten in my household. She's pretty vocal about when she's not feeling well! In fact, she was the one who prompted the initial dr visit. If her symptoms do get worse, then I'll persue the EGD and biopsy for sure. The doctors at Children's were in agreement in spite of the opposition from the co-parent.


  7. If you are going to reevaluate in 6 months for blood work, it can also be falsely negative if you take her off gluten.  I would seriously consider a call to the Dr. to see if that is a wise choice.

     

    Yes, we did discuss that. I should have said that at home we will eat gluten-free, but not strictly enforce it when at friends and families or eating out. I am simply not going to have gluten in my house so therefore she won't get it there. 


  8. Thanks for the advice! The doctors at Children's think that we should hold off on any endoscopy/biopsy until her symptoms either worsen or for 6 months when we will repeat the TTG IgA. They fear that if we do the procedure it will come back with a false negative. Although she is currently testing positive (27.6) it's not elevated enough to worry. So for now she will eat gluten-free when she is with me and her dad can do whatever he wants. 

     

     


  9. Today the Co-parent told me that if I'm not having GI symptoms then there is NO REASON I should be gluten-free. (I was diagnosed just a week ago).

     

    He went on to say that there's some study out there that supports this. Does anyone know what he could be talking about? I personally think he's making it up, but again I want to do anything possible to support my kids and their needs. I think that means being informed of possible contradicting studies.


  10. I was recently diagnosed thanks to a fluke test ran by my doctor. I have ZERO GI symptoms but definitely have the disease. I don't want to cheat, but I have to admit it's tough to maintain my willpower! I've read over the posts on why not to cheat and so far I'm still motivated to maintain gluten-free. Fortunately my community has many many grocery store options as well as gluten-free restaurants.  :)

     

    I have battled acne my entire life, and magically my skin is glowing after just a week gluten-free, so that's pretty awesome. However, if I don't have GI issues how can I tell if I've screwed up? I've been keeping a detailed food diary and will be going over it with a nutritionist but am in need of a little bit more guidance from those of you with experience.

     

    Thanks in advance


  11. She isn't in Denver, but in Northern Colorado The Cake Lady is AMAZING! www.thecakeladyshop.com 

     

    She's a personal friend of mine and can definitely do gluten-free. Since she's a small operation you don't need to worry about cc. I've had many of her cakes *although none gluten-free* but I can say they are delicious and absolutely GORGEOUS!!!


  12. I like this report from the World Gastroenterology Organisation.  Testing is discussed on pages 8-12, with a testing chart for sensitivity and specificity (which is the one he is arguing) on page 12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

     

    This discusses how a diagnosis can be made: http://www.cureceliacdisease.org/wp-content/uploads/2012/01/CdC_Newsletter_0112_v4-link.pdf

     

    Another paper discussing the accuracy of tests: http://www.jfponline.com/index.php?id=22143&tx_ttnews[tt_news]=172034

     

    This discusses how helpful symptoms are in diagnosing kids (not very): http://pediatrics.aappublications.org/content/early/2014/01/07/peds.2012-3765.full.pdf

     

    More info and tables: http://cvi.asm.org/content/16/11/1576.full

     

    Good luck. I hope he stops fighting you and realizes that his child's health isn't a battlefield.   :(

     

     

    WOW Thanks!!! I have seen the first link but not the others. The one on changing protocols for diagnosing children is great. 


  13. Thanks for the advice. You're correct, I am jumping the gun a bit. The Momma Bear in me gets a little worked up sometimes! 

     

    I really am trying to see things from his point of view. The whole reason I posted was to see if there were any conflicting websites out there that say the testing isn't accurate, etc. I guess I was thinking about the vaccination debate and maybe there's something I'm not hearing about.

     

    Time to take a deep breath. And stop talking to him until the appt. Or at least not talk about this subject until then. Ha!


  14. You know him better than we do, but I bet he is just making this up. Sounds like he wants either to do the opposite of what he thinks you want or he is just lazy? Or in denial?

    You can go to the Univ of Chicago Celiac center website and show him some info. Hopefully that will help.

    If he refuses to feed her gluten-free and she is diagnosed by a docotor, it is medical neglect of a minor. You may have to report him to Child protective services.

    You hit the nail on the head. I think he just wants to do the opposite of what I want. He didn't want to get either of my kids tested even though it's genetic. This year our PCP closed their practice so we went to his PCP, who originally refused to test because they were asymptomatic. For many reasons, I decided that Dr. wasn't a good fit so I switched and the new ped ran the test. Dad said I was manipulating the new Dr. and this was all just a ploy for me to have a Dr. I could "control." Effing CRAZY.

     

    When/If she is diagnosed I will force the change in diet or I will take full custody of her AND report him.

     

    What's even stranger is that he has ulcerative colitis! Why in the world he hasn't changed to gluten-free makes absolutely no sense to me. /rant


  15. I haven't been formally diagnosed yet (endoscopy is May 14) and neither has my 6 yr old daughter. However, my doctor indicates my tests results are fairly conclusive. My daughter tested positive just last week after I forced a switch in pediatricians in order to get her tested.

     

    Her father (ex-husband) keeps telling me her TTG IgA test that came back positive has a "VERY" high rate of false positives and that it's likely that she isn't sick at all. However, everything I'm reading states that it's 95-96% accurate. The Dr. yesterday told me that false negatives happen way more frequently. The dad is telling me that he will REFUSE to change her diet without a biopsy, and even then those have a high rate of false positives as well. That leads me to believe that even when/if she is formally diagnosed that he won't change her diet until she starts having major major health problems.

     

    I have no idea where he could be getting his information from! And when I ask him for websites and links he just ignores me. Does anyone have ideas on website that provide reports that show testing is inconclusive or there are high rates of false positives? I want to understand where he is coming from, but his history makes me think he is just saying whatever he wants to say regardless of actual facts.